tag:blogger.com,1999:blog-52144622786207543502024-02-20T12:15:40.849-06:00Interstitial Cystitis & Lung Transplant: My Life Battling Disabling IllnessI have been an Interstitial Cystitis (IC) patient since 2002. Since then I also developed a rare lung disease and had a life saving Lung Transplant (Nov. 2014). I decided to create this blog to share my journey through IC and Transplant and hopefully help others as they deal with either IC or Transplant. This is meant to be a place of support, information & encouragement.Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.comBlogger516125tag:blogger.com,1999:blog-5214462278620754350.post-81083310671456009812018-09-04T22:22:00.001-05:002018-09-04T22:22:54.022-05:00<div dir="ltr" style="text-align: left;" trbidi="on">
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<b><u>THE GRATITUDE COLUMN VS. THE CHALLENGES COLUMN</u></b>!</div>
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I haven't written a blog post in a very, very long time. When I got sick and discovered I would need a life saving Lung Transplant, all I could focus on was staying alive and waiting and hoping I would get the lung I needed. I couldn't focus on blogging, let alone much else other than the oxygen tank I was attached to for 24 hours a day; the Bi-Pap I needed to be able to stay alive while sleeping, that is if I was able to sleep at all. I was unable to sleep lying down as it made breathing impossible, so I had to sleep sitting up.<br />
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I was focused on getting my affairs in order, at my doctor's suggestion, as he wasn't sure I would make it long enough to get my transplant. Even now, as I write this, I fear it sounds like I'm whining, which I never wanted to do. So that's a big reason I stopped blogging while I was sick.<br />
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Thankfully, I received the Gift of Life on Nov. 3, 2014 and am approaching my 4 year anniversary in two months. A goal that at one time, seemed impossible to reach.<br />
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But even after I was blessed to receive my transplant, I struggled with writing. I never wanted my Blog to be negative, poor me and sound self-serving. I wanted to share my journey through my illnesses, the challenges and the successes, but without it sounding like "poor me". As I've recovered from my transplant I have had many struggles and I didn't want to just write about what I was struggling with.<br />
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I don't know if I'll get it right or not, but I felt it was time to try a new post. I look at my post transplant life in two ways: I have my Gratitude Column and I have my Challenges Column. The Gratitude column is filled with so much for which I am grateful. I am grateful to be alive! That alone practically fills the entire Gratitude column, but it can be broken down further. I am grateful for the support my family and friends provided during the most difficult time of my life. I am grateful the amazing team of doctors and nurses that literally saved my life. I am grateful to my organ donor and family for giving me the Gift of Life. I am grateful my lung is doing excellent so far after transplant and that I've had no episodes of rejection, don't need insulin or blood thinners as many transplant patients do. So the Gratitude column is overflowing.<br />
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But then there is the Challenges Column that make being a Lung Transplant patient - at least this one - extremely challenging. The incision from my transplant still causes a great deal of pain and has made recovery very difficult. It's taken nearly 4 years to finally find a specialized pain doctor who is helping me with Scar Infiltration injections and I am hopeful I'll be able to take this one out of the challenges column at some point. This treatment is showing promise, but we are not where we hope to get yet. But living with this pain all this time, has been no fun. Then there are the medications I must take in order to prevent rejection, and then the many meds to counteract all the negative side effects of the anti-rejection meds. We get significant and serious osteoporosis from the anti-rejection meds; we get sky-high cholesterol from the anti-rejection meds.; short term memory loss, confusion, cramps, bruising and in my case (as far as anyone can tell at this point), drug induced myopathy in my legs making walking a real challenge. I have balance issues from the pain/weakness in my legs and use a cane to insure I don't fall down and break a bone from the nasty osteoporosis. Being immunocompromised is no picnic either. I must be ever vigilant about being exposed to sick people, food borne illness and various air borne pollutants. As vigilant as I am, I still got food poisoning recently because I'm immunocompromised. It was clearly something that I was only affected by because I was the only person who got sick. Right now, however, trying to figure out what is causing this pain and weakness in my legs is my biggest challenge. I can't get up from a seated position without something to hold on to and push myself up. It's very frustrating because I worked so hard at my post transplant rehab and was doing great. I could walk 3 miles in about an hour less than one year after my transplant. Since then, as time goes on, things have gotten worse and worse. I am not giving up and will be seeking a consultation with a specialist to see if he can help figure out what has happened.<br />
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So both my columns are filled to capacity. My Gratitude column is what I try so very hard to focus on when I'm having a bad day. I try to remind myself of all those things for which I am so grateful. But living with chronic pain, not being able to walk more than a few feet without having to stop, makes me crazy. I worked so hard to regain my fitness and it's disappearing before my eyes and no matter how much I try to exercise to try to make it better, I simply make it worse.<br />
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It's not like we weren't told being a transplant patient would not be easy. We were certainly told A LOT of the "bad stuff" to expect after transplant. Most of what I deal with was basically expected; some wasn't.<br />
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So I battle with the Gratitude Column vs the Challenges Column. It's difficult to just be positive every day when struggling to walk, deal with pain and all the side effects of all the meds. But I work with my Psychologist and try to focus on the things for which I am so Grateful. I don't win this battle every day, but every day is a chance to try again.<br />
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-28984281805926301962017-06-16T14:30:00.000-05:002017-06-16T14:41:37.835-05:00THE JOURNEY THAT IS TRANSPLANT!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "trebuchet ms" , sans-serif;">I haven't Blogged in a long time. I've been struggling with a bit of writer's block, and never wanting a Blog to be negative, I didn't feel right writing about my struggles post transplant.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">But, I finally decided I needed to talk about the good, the "bad" and everything in between if I was to really be honest about this Journey I call Transplant.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><u>THE GOOD</u>:</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">I am 2 1/2 years post transplant. I received my lung on Nov. 3, 2014 and am rapidly approaching my 3 year anniversary. That is no small thing and I wake up grateful every single day for the Gift of Life that was given to me by a very generous donor. I get to breathe. To be able to say that, and DO that, to me is nothing short of a miracle. If you've read previous Blogs where I wrote about getting sick, finding out I would need a transplant to survive, getting accepted by the greatest Lung Transplant program in Illinois, then you know a little about what it has been like. My gratitude for the Loyola University Medical Center Lung Transplant Team is beyond words. They literally saved my life and I will be thankful to them for as long as I live. They continue to care for me post transplant and make sure I am doing well and taking care of me when problems arise. They are simply The Best!</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I have been extremely lucky in that I have not had a rejection episode so far! While it's not unheard of, of course, it's also not necessarily "normal". I count myself lucky that my lung seems to be behaving and doing the work it should! Of course, this is likely due to the amazing Transplant Team who know how to manage my medication dosing to get the right results, but I still consider myself lucky to have not had to experience rejection so far. Fingers crossed it stays that way!</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I am also so grateful for the generosity of my organ donor. Without people like my donor wanting to sign up as soon as they get their driver's license, I would not be here. We need more people to WANT to be organ donors. To leave a legacy of life and gratitude after you are gone is a beautiful thing and if you're reading this and are not a donor, I urge you to become one. It's so easy; here's the link:</span><br />
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<a href="https://www.unos.org/donation/register-to-be-an-organ-donor/" target="_blank"><span style="font-family: "trebuchet ms" , sans-serif;">https://www.unos.org/donation/register-to-be-an-organ-donor/</span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">As of today, there are 117,710 people waiting for a life saving transplant. Please sign up to be a donor today!</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">My First Walk Post Transplant!</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">My New License Plate in Honor of my New Lung!</span></div>
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<u style="font-family: 'Trebuchet MS', sans-serif; text-align: left;">THE "BAD"</u><span style="font-family: "trebuchet ms" , sans-serif; text-align: left;">:</span><span id="goog_1715025731"></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">All those drugs! They tell us prior to transplant what to expect. I'll never forget my very first meeting with the head of the Transplant Department. He told me then that while a lung transplant can be a life saving procedure, I needed to know that I would be trading one disease state for another because of all the side effects of the anti-rejection medications we must take for the rest of our lives. He did not exaggerate. I truly believe they want to see if an individual is ready to fight through all these issues or if they don't have that fight in them. I chose to fight if they would have me.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I struggle with multiple side effects from these medications; short term memory loss, drug induced myopathy in my legs requiring me to use a walker now to get around; chronic kidney disease where I am now being monitored by the Transplant Nephrologist though I am currently stable; extreme exhaustion; bruising all over my body, extreme mood swings; high cholesterol requiring more medication to control that; worsening of osteoporosis, again requiring more medication to control that.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I know I am not alone in this. This is not intended to be taken as me feeling sorry for myself. But as many transplant patients will tell you, these medications are not easy to deal with, yet we have no choice if we are to live, so we willingly comply and take our medications on schedule as instructed.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">These drugs are not cheap either. Just one of my medications costs $750 every month. I am on disability and even with my insurance, that's my cost for this one drug. It adds up. And every time I turn around, I feel like I'm an ATM machine just pushing cash out for medical expenses.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">There are good days and there are "bad" days where some of the side effects make life more challenging than I would like. But I agreed to a transplant, so that means I take the good with the "bad".</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">All My Meds!</span></div>
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<u style="font-family: 'Trebuchet MS', sans-serif;">EVERYTHING IN BETWEEN</u><span style="font-family: "trebuchet ms" , sans-serif;">:</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">These are most days where I go about my business, be a good and compliant patient and don't complain about aches, pains and not being able to remember what day it is. I just cope and am glad to be here with a wonderful lung that is doing what it's supposed to. Take my vitals, do my spirometry, take my meds. I go through my daily routine without really thinking about it now. It's just what I do. I've even gotten to the point that when I see a doctor and they read me my list of medications to make sure it's correct, I actually know every single one of them and if they are missing something or if they got them all right. But I can't remember what day it is - LOL!</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">This Blog post is meant to give those who read it, just an idea of what life as transplant patient is like, or at least what my life is like. I am lucky. The challenges I deal with from my medications are nothing compared to what some patients struggle with. When I'm not having a good day, I remind myself that it could be much worse and to be grateful for how well I am doing.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">This has been a little insight into what I call my Journey through Transplant! I am lucky to be here to write about this and grateful for the donor who saved my life. It may not be perfect, but then whose life really is! I get to wake up every day, take nice deep breaths and live! Who could ask for more!</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Celebrating my 2 Year Transplant Anniversary Nov. 3, 2016</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com6tag:blogger.com,1999:blog-5214462278620754350.post-60793634968877258082016-11-23T19:14:00.000-06:002016-11-23T19:14:07.183-06:00AN UPDATE - TO DO BLADDER INSTILLATIONS OR NOT AND MORE!<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="-webkit-font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">A lot of IC patients have either considered trying instillations or have tried it once and felt it didn't help so they gave up. </span></span></div>
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<span style="-webkit-font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">If you’ve been trying Instillations and feel you are not having success, I would urge you to work with your doctor about trying different cocktails. For example, if you’ve been using the same cocktail for a 6 months or even many years and it’s not working, then it’s time to move on! First, there are SO many different cocktail combinations that can be tried you should ask your doctor about trying a different one. It took me about 4-5 different cocktails before we hit the right one that works for me. If your doctor is not open to trying a different cocktail, then you need a new doctor! <br />
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The instillation cocktail my doctor uses is a basic one of Heparin, Lidocaine and Sterile Saline. Many doctors use Sodium Bicarb and when I asked my doctor why he didn’t use that, he told me he wasn’t seeing enough successful results with that in the cocktail. He replaced it with Sterile Saline and, in his practice, he saw much better results.</span></span></div>
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So if your cocktail has Sodium Bicarb, but you feel it’s painful or not helping, talk to your doctor about replacing it with the Sterile Saline and see if that works. <br />
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In addition, some patient’s cocktail includes Kenalog. I could not tolerate Kenalog, but some patients love it. So the point is to be willing to try different cocktails if one doesn’t work, another might. That’s how we found what worked for me.</span></span><br />
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<span style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Bottom line, an instillation should NOT be painful. So if it is, then don’t keep doing them. The point is to relieve your pain not make it worse. But I would, again, urge you to try a different one to see if you can find one that does work. </span></span></div>
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If you explore several different cocktails and none of them work, you may need a referral to a Qualified Pain Management doctor. <br />
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<b>I’ll post a link to the ICA website on the different instillation cocktails that you could consider. Read it! Print out things you want to discuss with your doctor. If he’s not interested talking about other treatments, again, you should look for a new doctor! There are treatments out there that can help and don’t give up until you find better help!</b></span></span></div>
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<span style="font-kerning: none; text-decoration: underline;"><a href="http://www.ichelp.org/diagnosis-treatment/treatments/bladder-instillations/"><span style="font-family: "trebuchet ms" , sans-serif;">http://www.ichelp.org/diagnosis-treatment/treatments/bladder-instillations/</span></a></span></div>
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<span style="-webkit-font-kerning: none;"><b><span style="font-family: "trebuchet ms" , sans-serif;">In addition, I below are links to two videos I did a few years ago that talk about catheters and catheterizing (either in the doctor’s office or at home). I think there’s some important and helpful information in the video, so you might want to watch that as well.</span></b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b><u>Video - Catheters 101</u></b></span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com1tag:blogger.com,1999:blog-5214462278620754350.post-72383714966947221592016-09-25T19:17:00.000-05:002016-09-25T19:17:18.417-05:002016 HIKE FOR LUNG HEALTH!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif;">Today was the Respiratory Health Association of Chicago (RHA) <a href="http://www.lungchicago.org/" target="_blank">http://www.lungchicago.org</a> Annual Hike for Lung Health; 3 miles through beautiful Lincoln Park in downtown Chicago. I did it last year for the first time only 10 months post transplant. I finished and was thrilled that I could raise money for a great cause and accomplished something that, for me, was a big deal so soon after transplant.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Well, since then I have been having physical challenges with my legs; extreme pain and weakness and it's been very hard to keep up with my walking due to the pain. But I have kept at it while going through an array of tests to try to determine what's going on with my legs.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It hasn't been easy. The pain has kept me up all night on more than a few occasions, but I can't allow myself to go back to the poor condition I was in while waiting for my lung. So I persevere and just do what I can do.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I didn't know if I'd be able to do all 3 miles today but I was going to try. Several wonderful ladies from the RHA walked beside me the entire way and that kept my mind off the pain and helped me push through all the way to the finish line!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Here I am crossing the finish line, arms raised in celebration!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I cannot tell you what it means to me, even with all the side effect challenges I have, to be able to walk 3 miles. After being so sick, having my lungs fail me (a mystery we will never understand) and needing a lung transplant to survive, being able to accomplish an event like this means the world to me.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Many of my friends and family made donations to my fundraising campaign and I was able to raise over $1,000 and I am so grateful to each an every single person who donated. But I am also so grateful for all the pep talks, encouragement and support to keep on trying and see if I could do it. You all got me across that finish line. I needed a good nap by the time I got home, but it was so satisfying to be able to say I DID IT!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Check me out getting to meet Illinois Secretary of State, Jesse White</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">at the Hike and thank him for his support of organ donation!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Me and some of the hard working and wonderful ladies</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">of the RHA Staff before the Hike!</span></div>
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<a href="https://1.bp.blogspot.com/-pAQs0WCGISA/V-hZ4a-rYhI/AAAAAAAAEew/Q6_lSPAtW8EBGdIutlhHmugz1HuGyhktQCLcB/s1600/IMG_2308.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://1.bp.blogspot.com/-pAQs0WCGISA/V-hZ4a-rYhI/AAAAAAAAEew/Q6_lSPAtW8EBGdIutlhHmugz1HuGyhktQCLcB/s400/IMG_2308.JPG" width="400" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><span aria-live="polite" class="fbPhotosPhotoCaption" data-ft="{"tn":"K"}" id="fbPhotoSnowliftCaption" style="color: #1d2129; display: inline; font-size: 14px; letter-spacing: -0.23999999463558197px; line-height: 18px; outline: none; text-align: left; width: auto;" tabindex="0">Me and Chair Elect of the RHA Board of Directors, David B. Yelin, Esq.</span><span class="fbPhotoTagList" id="fbPhotoSnowliftTagList" style="color: #1d2129; display: inline; font-size: 14px; letter-spacing: -0.23999999463558197px; line-height: 18px; text-align: left;"><span class="fcg" style="color: #90949c;"> </span></span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Today was a great day for me and so many fighting lung issues and working to raise awareness and money for clean air! </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">My thanks to everyone from the RHA for making me feel I was part of their team and supporting me and my efforts in today's great Hike for Lung Health!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">No matter how hard or challenging, I will Never Surrender to it and keep on walking!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">"Never Surrender" - Corey Hart</span><br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/-4pg6Jh94Lo/0.jpg" src="https://www.youtube.com/embed/-4pg6Jh94Lo?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-37669593281907007732016-08-03T11:13:00.002-05:002016-08-03T11:13:51.265-05:00I CELEBRATE EVERY ANNIVERSARY & RAISING AWARENESS!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif;">Today, as another month has come and gone, I celebrate the 21st month anniversary of my Lung Transplant! It's hard to believe that much time has gone by and yet I am rapidly approaching my 2 year anniversary. That will surely be a day for celebration!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But every month on the anniversary of my transplant I silently thank the generosity of my Organ Donor who believed in organ donation at a young age and signed up when he got his driver's license at just 16, sure that he would want to be a donor should something ever happen. Sadly, for his family, he passed away at only 22 years old. But the gift he gave and lives he saved - not just mine - is something for which I am grateful every single day I wake up. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Sure, I have my challenges post transplant. Most transplant patients have some issues they must deal with. The anti-rejection medications, while saving our lives, can cause a multitude of side effects and I am dealing with those. I am lucky to have an amazing transplant team and my Coordinator is just the best. She is patient and answers all my questions, no matter how minute or silly they may be. I have such a good team helping me navigate post transplant life. I couldn't do it without them.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am so grateful that I felt a strong need to try and give back in some way. So I Blog, Tweet and Instagram about organ donation, transplant and lung health. I have gotten involved with the Respiratory Health Association of Chicago and have been lucky to get to go with them to call on both my Illinois State Representative and my Illinois State Senator to thank them for supporting clean jobs and Tobacco21 legislation. I shared my story and why clean air is so important to me and everyone.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The Respiratory Health Association Staff and I thank Representative Sam Yingling </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">at our meeting to thank him for supporting Clean Jobs Legislation </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white; color: #292f33; letter-spacing: 0.25999999046325684px; text-align: start; white-space: pre-wrap;">Thanked </span><a class="twitter-atreply pretty-link js-nav" data-mentioned-user-id="1167567817" dir="ltr" href="https://twitter.com/SenatorBush" style="color: #d02b55; letter-spacing: 0.25999999046325684px; text-align: start; text-decoration: none; white-space: pre-wrap;">@SenatorBush</a><span style="background-color: white; color: #292f33; letter-spacing: 0.25999999046325684px; text-align: start; white-space: pre-wrap;"> yesterday for supporting Clean Jobs legislation.</span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So as I celebrate each milestone, I am always thinking of the greatest gift I have ever received and work to raise awareness and give back to honor my #organdonor. </span></div>
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<span style="background-color: white; color: #111111; font-size: 16px; text-align: start;"><span style="font-family: Trebuchet MS, sans-serif;">“At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.” — Albert Schweitzer</span></span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com2tag:blogger.com,1999:blog-5214462278620754350.post-45240875844207828512016-07-24T11:41:00.000-05:002016-07-24T11:41:03.860-05:00SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif;">We all have our daily struggles, some more than others. While I am happy that my lung is doing well, I am struggling with other issues that are making enjoying my transplant difficult. I look for inspiration where I can to help keep me fighting. Sometimes it's a simple quote, other times something more. Today's quote just spoke to me and I hope it speaks to you. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I have much for which to be thankful, so even though I have my struggles, I keep on going. </span><br />
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com1tag:blogger.com,1999:blog-5214462278620754350.post-60946692897126883672016-07-20T22:50:00.004-05:002016-07-20T22:50:49.816-05:00ANOTHER YEAR OF LIFE!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif;">Today was my 61st Birthday! Most women don't like to brag about their age, but when I got sick with a rare lung disease, vanity kind of went out the window.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am here thanks to the ultimate #GiftofLife I received in Nov. 2014 and so today I got to celebrate my Birthday with my family. When I was sick these little things were all I thought about and all I wanted more of. Time with my family.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Today, we did not have a fancy party; I didn't want everyone in the kitchen all night long. We had a simple dinner at my request and we got to spend quality time together. It was so wonderful. The family that couldn't be there called to send their birthday wishes.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I got so many wonderful birthday wishes on Facebook and it meant so much to me, that no matter how long it takes, I'll write a personal thank you to each. These are the important things in life to me. Connecting with family and friends, near and far. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thanks to the lung donation I received, I am still here. Something that at one point was not certain. So today was the best day. I relaxed, spent time with those I love the most and it made me so happy.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Throughout the evening, I had moments where I thought of my organ donor and family and gave silent thanks for the gift they have so selflessly given to me and my family. Without their support of organ donation, this celebration would not have taken place. I do not take it for granted. Sunday we will go celebrate one of my nephew's college graduation party. Being there with all my family for celebrations like this or just getting any time together is what means the most to me. I am forever grateful to have gotten my lung and that I am here say that I am proud to be 61!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Blowing Out the Candle on My 61st Birthday Cake!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">"Forever Young" - Bob Dylan</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com1tag:blogger.com,1999:blog-5214462278620754350.post-60981420695643952502016-07-03T11:28:00.000-05:002016-07-03T16:27:09.869-05:00NOBODY SAID IT WOULD BE EASY & HAPPY TRANSPLANT-AVERSARY!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "trebuchet ms" , sans-serif;">I haven't posted in a while. I've had my challenges and didn't want to put up a post that sounded all negative. But nobody said this (being a transplant patient) would be easy.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">The good news is my lung is doing well. I'll be going on July 19th for my quarterly transplant check up. They'll give me a good going over and make sure everything is going as it is supposed to.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">But I've been having my struggles. Mainly having to do with exercising and trying to regain my strength. I have been working and exercising 4-5 days a week for 18 months and feel I am not making the progress I should. I've been experiencing significant pain in my legs and I would never recover from a workout as one should. The pain got so excruciating that it was keeping me awake at night until 4am and I could not sleep. Walking around the house even felt wobbly. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">The last straw was a 3 mile walk I went on one day and I have never felt so bad as I did that day. My legs felt like they were going to give out on me and I did almost collapse a few times; I was so short of breath I had to stop 6 times, even going to my brother and sister-in-law's house looking for a ride home. Sadly no one was home (I thought it was Saturday thanks to med-head when it was Friday so everyone was at work). I sat on their porch in the shade for a little bit and started out again for home. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">It was the worst walk of my life, pre or post transplant. I have never had an experience like that. I almost sat down on the grass in one of our parks and would have stayed there until I could find someone to drive me home. But I wobbled my way to our house and made it home. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I had a good drink of water, took a shower (holding myself up by the grab bar) and then took a nap for several hours. By then I knew it was time to contact my Transplant Nurse Coordinator. We had a long conversation about my situation. Every transplant patient is different. Some recover their strength back quicker than others and others never return to where they were prior to transplant. It appears (and they want me to accept this may be my situation) that I am not ever going to be the way I was prior to getting sick. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">My Coordinator said it's possible having only one lung can have an impact on STRENUOUS activity like exercise. Not all do, but it's possible and it makes sense to me. They can't really say 100%. Also my legs may never be the same. I was told what I've been doing is more than most and they know how hard I've been working, which they feel has been a good thing. But at this point the suggestion was to BACK OFF, SLOW DOWN, and CUT MY DISTANCE. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">So that's what I've been doing. It took almost a week for the pain from that last 3 mile walk to subside. I've cut my distance, going less than 1 mile instead of always shooting for 3 miles. Today I walked .68 miles in 18 minutes. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I will admit to being very frustrated by these physical challenges. It would be so easy to just say "it's too hard, I can't do it and I give up". I've felt like that several times. But I know what it's like to be completely de-conditioned from a year of being sick while I waited for my lung. You lose your muscle conditioning SO fast and I don't want to ever be like that again. So I pick myself up, lace up my walking shoes and off I go for shorter, slower walks. It's good for me and if it goes as I would like, I MAY be able to make progress and go a bit further and a little faster. I can't push it, but I'm hopeful. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I am so lucky to have gotten my lung transplant and that things are going well. I am here and will be celebrating my birthday in a few weeks. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Today is my 20 month Transplant Anniversary; a day worth marking and for giving thanks for the Gift of Life. The least I can do is honor that gift and, even if things get hard and challenging sometimes, always remember the gift I was given and the promise I made to do everything I could to care for that gift.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">So if that means, adjusting my mind set and goals, then that's what I'll do. I promised never to give up and so I persevere. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Sometimes it's hard, but then nobody said it would be would be easy!</span><br />
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com1tag:blogger.com,1999:blog-5214462278620754350.post-61814471799573879992016-05-13T16:26:00.001-05:002016-05-13T16:26:48.915-05:00AND I WAIT TO HEAR ......!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif;">My blog a few weeks ago was about the memorial Candle Lighting Service my hospital holds every year to honor organ donors and their families.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I had a picture of me holding my donor's first name at the ceremony taken and I wrote another letter and sent it through the complex and secret process to the donor family. Just like I had to do when I wrote them the first time. I hoped they would like to see this photo of me honoring their son at this very special service. I want them to know how much his gift means to me and my family.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">These communications, due to privacy and the delicate nature of transplant, move slowly. And the family can turn down receipt of the letter. So you never really know if they've received it, but choose not to communicate with you; whether they turned down receiving it; whether it hasn't arrived yet.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am so hopeful this will be meaningful to my donor's family and that they got it and are deciding whether to get in touch with me.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And so I wait to hear. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I understand it may be too painful for them to reach out to me. I would very much like to meet them. Their letter to me said they were very interested in meeting the recipients. I filled out the release with my information so they could contact me. But they also have to fill one out and I was told they have not yet done so.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And so I wait.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Maybe they're just not ready. I can understand that. But if they reached out I think they might find someone who is so grateful it would give them some measure of peace. I hope so. I really hope they get this letter and picture and it gets them thinking about connecting with me. I have to respect whatever they decide, but I so want to thank them in person.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And so I wait.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">If I do hear back, you can be sure I'll write a Blog post about it! My fingers are crossed and even if I don't hear from them, I pay tribute to their son every single day.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This sits on my dresser in my room so I can remember</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">every day the gift I was given.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">"Forever Young" - Bob Dylan</span><br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Frj2CLGldC4/0.jpg" src="https://www.youtube.com/embed/Frj2CLGldC4?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-40888690805244442282016-05-08T08:19:00.000-05:002016-05-08T08:59:55.257-05:00SUNDAY'S SPECIAL INSPIRATIONAL POST & SONG FOR MOTHER'S DAY!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "trebuchet ms" , sans-serif;">It's Mother's Day! I want to wish my wonderful Mother a very Happy Mother's Day! She has done SO very much for me as I struggled first through a chronic illness called IC and then through the scariest time of my life called Lung Transplant! She truly is my "sainted mother" and I am so blessed to have her. So this Blog is a tribute to the very best Mom anyone could have! I am so grateful! HAPPY MOTHER'S DAY, MOM!</span><br />
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<span style="color: #3c605b; font-weight: bold;"><span style="font-family: "trebuchet ms" , sans-serif;">To My Mother</span></span><span style="color: #3c605b; font-family: "trebuchet ms" , sans-serif; font-weight: bold;"> </span><span style="font-family: "trebuchet ms" , sans-serif; font-weight: bold;">by Robert Louis Stevenson</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">You too, my mother, read my rhymes </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">For love of unforgotten times, </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">And you may chance to hear once more </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">The little feet along the floor.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Taking Care of Me While I Waited for My Transplant</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">One Again Supporting Me; Both of Us at the Finish of the</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Hike for Lung Health Post Transplant</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">"In My Daughter's Eyes" - Martina McBride</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-34226294940754987342016-04-30T08:38:00.000-05:002016-05-05T11:54:28.402-05:00DEAR TREVOR: A LETTER TO MY ORGAN DONOR!<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "trebuchet ms" , sans-serif;">To honor the final day of #NationalDonateLifeMonth, I wanted to put in writing my gratitude to the donor who saved my life. It makes me sad that someone had to die so that I might live. But, if I could write or talk to him, this is what I would want to say.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Dear Trevor;</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">You don't know me and I didn't ever get the pleasure of meeting you. But we are forever connected because you were the kind of generous individual that wanted to be an organ donor. Sadly, for your family, you became the organ donor you wanted to be, should something ever happen.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I was blessed to receive one of your lungs on Nov. 3, 2014. I had a single right lung transplant that saved my life thanks to you. I have exchanged letters with your family and let them know how grateful I am for their support of your decision to be an organ donor. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">They wrote back and that's how I know your name, Trevor. I carry it with me every single day. Every day that I wake up, take a deep breath, I think of you. Every time I go workout, even though it is very challenging, I think of you. Every time I get hugged by a member of my wonderful family, I think of you. If it weren't for you, none of those things would be possible. My family and I are now, and forever will be, grateful beyond words.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I was so sick, my lungs giving out on me so rapidly that if I didn't get my transplant when I did, my outcome would not have been happy. For that I am forever grateful to you.</span><br />
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<span style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I was and am so grateful for the Gift of Life the lung I received has given me. I have recovered very well. I was discharged from the hospital only 8 days post transplant, which is amazing! My Transplant Team tells me that I am, and I quote: “doing GREAT!” I have not needed any oxygen at all since my transplant, so being able to be free of the oxygen machine and the Bipap is a wonderful feeling. When I watched the oxygen machine being taken from the house I cried. Again, tears of joy at not having to be tied to an oxygen machine anymore! I can sleep laying down again. These are not huge things, but they are what I dreamed of when I was sick. My dreams are simple. To be able to regain my strength and go for a walk outside again and enjoy nature. I have done this. Just going up and down the stairs and making my own meals and not having to have my mother wait on me hand and foot is wonderful. To take a real shower, without assistance. Small things that are often taken for granted but that I am beyond grateful to be able to do again.<br />
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I promised the Transplant Team that if I got a lung, I would do everything they asked of me and do everything in my power to take care of this most precious gift that you gave to me, and I am an extremely compliant patient. I believe they would tell you that I am. I think since you made the ultimate sacrifice so that I might live, it is my responsibility to do everything I am supposed to in order to care for this precious gift you gave to me.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I wish you could actually read this and know how grateful my family and I are for the Gift of Life you and your family gave to me. Your generosity and willingness to help others in such a profound way will never be forgotten and we will honor your gift on each anniversary of my surgery. We will take time to think of you and your family and the gift you gave to me and what it has meant for my family. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">With deepest gratitude,</span></span></div>
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<span style="-webkit-font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Catherine</span></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">"Kind & Generous" - Natalie Merchant</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-79219506407779778652016-04-27T10:50:00.000-05:002016-04-27T10:50:05.815-05:00THE CHALLENGES OF MULTIPLE ILLNESSES!<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif;">This Blog, as many know, started after I was diagnosed with Interstitial Cystitis. If you're new to my blog, you may ask "What Is Interstitial Cystitis (IC)"? </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Well, <span style="-webkit-text-stroke-color: rgb(50, 51, 51); -webkit-text-stroke-width: initial; color: #323333;">Interstitial Cystitis</span><span style="-webkit-text-stroke-color: rgb(50, 51, 51); -webkit-text-stroke-width: initial; color: #323333;">, or as we call it, IC, is a bladder condition that usually consists of multiple symptoms.</span><span style="-webkit-text-stroke-color: rgb(50, 51, 51); -webkit-text-stroke-width: initial; color: #323333;"> Most IC patients have recurring pelvic pain,</span><span style="-webkit-text-stroke-color: rgb(50, 51, 51); -webkit-text-stroke-width: initial; color: #323333;"> pressure, or discomfort in the bladder and pelvic region, and urinary frequency</span><span style="-webkit-text-stroke-color: rgb(50, 51, 51); -webkit-text-stroke-width: initial; color: #323333;"> and urgency</span><span style="-webkit-text-stroke-color: rgb(50, 51, 51); -webkit-text-stroke-width: initial; color: #323333;">.</span></span><br />
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<span style="font-kerning: none;"><span style="font-family: Trebuchet MS, sans-serif;">IC may also be referred to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain. You can read more about these different names for IC on the ICA website:</span></span></div>
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<a href="http://www.ichelp.org/about-ic/what-is-interstitial-cystitis/#sthash.JToCi6au.dpuf" target="_blank"><span style="font-family: Trebuchet MS, sans-serif;"> http://www.ichelp.org/about-ic/what-is-interstitial-cystitis/#sthash.JToCi6au.dpuf</span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">While everyone with IC is different, some patients, like me, have such severe cases where traditional treatments don't help and we end up on Disability. I can't take pain medication so my options are limited. I usually get bladder instillations at my doctor's office and I have to self-catheterize due to retention. This was challenging enough all alone; I had to sell my home and move in with my parents where I still live.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Then out of the blue in Nov. 2013 I came down with a cough and an illness no one could diagnose. I was in and out of the hospital over the course of 3 months. That's when I was advised to make the trip to the Mayo Clinic to get a diagnosis. My brothers really came through and two of them escorted me and pushed me around in the wheel chair that by then I needed.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">By the time all the testing was done and I met with the doctor I was given a diagnosis: Idiopathic Bronchiolitis Obliterans. WHAT the heck is that I wanted to know. What I was told next changed my life forever. The doctor explained the disease and told me I would need a Lung Transplant if I was to survive. We were all very quiet and shocked to say the least. I know I was a "deer in the headlights".</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Eventually I was accepted for transplant and listed with UNOS. It took about 5 months from being listed until I got THE CALL that they had a lung for me. I have done well since transplant and my lung has allowed me to breathe and enjoy life.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">With that said, being a transplant recipient is a lifelong situation requiring I take about 20 different medications and about 35 pills every day. With that come a lot of side effects that can be very challenging.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Having both IC and being a Lung Transplant Recipient do not exactly go well together. Since transplant I have had to work very hard at physical rehab, which my IC does not like. But if I am to regain my strength post transplant I must work out, which is challenging enough by itself. But then my IC goes into a flare from the exercise and I'm miserable from that.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">In addition, being a transplant patient means I will be on anti-rejection medication for the rest of my life which means I am immunocompromised and must be very careful about exposure to germs and follow strict guidelines to avoid catching things. Even doing all I can, I can still get things that I might not otherwise if I were not immunocompromised.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Due to my IC retention problem, I have to self-catheterize which can be challenging for healthy people, exposing them to the possibility of a UTI. Well, now that I am immunocompromised, I have had 5 back to back UTI's, which for an IC patient is making a bad situation even worse. I'm concerned that a trend has started and that I will be battling chronic UTI's. I hope this isn't the case, but it certainly could turn out this way.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Those are just a few examples of how these two diseases don't get along and make life post transplant more challenging. I'm learning to cope with all the side effects and problems that pop up from being on so much strong medication. It isn't easy, but I keep going. I listen to my body and if I need a break, I take it. Other days, I persevere and go do my workout. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">It's a learning curve trying to make sure I am following all the guidelines I've been given, looking out for signs of other medication problems - am I sick? is it just allergies? why do I have that cough? </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #323333;">Thank heaven we are assigned a Transplant Nurse Coordinator who has the patience of a saint and answers all my questions, no matter how minor. She reassures me when I need it and tells me when something needs changing. Aside from my family, </span><span style="color: #323333;">without</span><span style="color: #323333;"> my amazing medical team, I could not do this!</span></span></div>
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<span style="color: #323333; font-family: Trebuchet MS, sans-serif;">I'd rather not have to deal with all this; who would want multiple medical conditions? But this is my life and the Challenges of Multiple Illnesses. I will deal with whatever is thrown my way!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(This was written for the 2010 Winter Olympics</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">but I Find It So Inspirational)</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-60540564242954385422016-04-21T20:52:00.000-05:002016-04-21T20:52:01.147-05:00LOYOLA UNIVERSITY 25TH ANNUAL CANDLE LIGHTING CEREMONY!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif;">April is National Donate Life Month to bring awareness to the need for more people to sign up to be organ donors. As of today there are 120,969 people waiting for a life saving transplant, so this annual effort at raising awareness and getting more people to become donors is so important.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">There are many activities going on all month long across the country and it's wonderful to see so many people involved in different events to help raise awareness.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This week, my hospital (Loyola University Medical Center) has an information table set up where individuals could stop, ask questions, sign up as a donor. I volunteered to work the table for a bit on Tuesday and it was the most rewarding experience I've had in a very long time. The table was staffed with all volunteers but of those, I was the only Lung Transplant recipient. While I was there a man in a wheel chair on oxygen and with his wife and daughter came to the table. He was SO thankful to be able to talk to a lung transplant recipient who has been through it, who also had the same procedure he is going to have. His wife was crying as we hugged and she thanked me for talking to them. Thanking me! I should be thanking them! It was a wonderful moment.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Me Volunteering at the #NationalDonateLife #organdonation sign up table.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Today was our Annual Candle Lighting Ceremony held each year during this month in memory and thanksgiving to those who have given life to others through organ donation. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">This year, I wanted to do something special to honor my donor and donor family at the Candle Lighting. </span><span style="font-family: 'Trebuchet MS', sans-serif;">I have written to my donor family and received a letter in reply from them last year, so I now know the first name of my organ donor. I contacted UNOS and requested someone take a picture of my donor's name from the </span><span style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: 'Trebuchet MS', sans-serif;">Wall of Names at the UNOS National Donor Memorial Gardens at their corporate headquarters in Richmond, Virginia.</span><span style="-webkit-text-stroke-width: initial; font-family: 'Trebuchet MS', sans-serif;"> I framed the picture of his name and took it with me to the Candle Lighting Ceremony to honor him and his family for giving me the ultimate Gift of Life.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">This was the 25th Annual Candle Lighting at Loyola and it's always a very moving and emotional event. Tonight's highlight was the first speaker and Special Honoree, Dr. Susan Hou. Dr. Hou is believed to be the only transplant physician in history to be both an organ donor and organ recipient. To hear her speak was very special and moving. And she's still going strong. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I feel that once you have a transplant, you are part of a very special family. I feel a kinship with other recipients and we share our stories with each other and all of us talks about our donor and donor family. The medical staff treats us all like family, readily giving hugs to all of their patients. It's a special group of people.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Me and my Amazing Nurse Practitioner Erin!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">To me, the most moving part of the program is the actual Candle Lighting! The ceremony begins with any transplant recipient, persons waiting for a transplant or family members of donors light a candle in memory for all those that have given life to others through organ donation. As I walked up toward the altar to take my candle, I carried my donor's name with me, lit my candle and added it to the other candles, I touched my donor's name in his memory and to honor him and his family. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">This was a very special evening for me and, I am sure, for everyone in attendance. While I don't need reminding that someone gave me the ultimate Gift of Life, it is appropriate that we take time every year - for 25 years now - to set aside a day where we make sure to honor our donors and donor families who made the ultimate sacrifice so we could live.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Candle Lighting Ceremony Video</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The depth of my gratitude to my donor and donor family is immeasurable. I also want to acknowledge the Loyola Medical Team who worked tirelessly to save my life and continue to make sure all goes well. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">This poem was in the Ceremony Program and it touched me, so I want to share it to honor all organ donors and their families.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>A limb has fallen from the family tree.</i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>I keep hearing a voice that says, "Grieve not for me.</i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>Remember the best times, the laughter, the song.</i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>The good life I lived while I was strong.</i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>Continue my heritage, I'm counting on you.</i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>Keep smiling and surely the sun will shine through.</i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>My mind is at ease, my soul is at rest.</i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>Remembering all, how I truly was blessed.</i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>Continue traditions, no matter how small.</i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>Go on with your life, don't worry about falls.</i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>I miss you all dearly, so keep up your chin.</i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>Until the day comes we're together again.</i></span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-83003100736721443312016-04-03T08:45:00.000-05:002016-04-03T08:45:28.065-05:00SUNDAY'S INSPIRATIONAL POST: APRIL IS NATIONAL DONATE LIFE MONTH!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "trebuchet ms" , sans-serif;">April is National Donate Life Month where those of us in the Transplant Community pay tribute to those who have given the Gift of Life through Organ, Eye and Tissue donation.</span><br />
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<a href="https://4.bp.blogspot.com/-dey0yrbjjY4/VwAUlslur2I/AAAAAAAAEWE/ZXgnK8MEVMIsc-KDh5uuM_694M_tTU6vQ/s1600/Screen%2BShot%2B2016-04-01%2Bat%2B10.05.06%2BAM.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="257" src="https://4.bp.blogspot.com/-dey0yrbjjY4/VwAUlslur2I/AAAAAAAAEWE/ZXgnK8MEVMIsc-KDh5uuM_694M_tTU6vQ/s640/Screen%2BShot%2B2016-04-01%2Bat%2B10.05.06%2BAM.jpg" width="640" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="text-align: left;">This video is t</span><span style="text-align: left;">o honor my organ donor along with all those who have given the Gift of Life. </span></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Give the Gift of Hope</span></div>
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<a href="https://3.bp.blogspot.com/-YgHdI1Zurq8/VwAWNHeyxWI/AAAAAAAAEWQ/HFO5GnJP1gIV-wTX_E4qRbEX_H5IuUC4g/s1600/1b851231d0c3cb2e038da4f5a6898f63.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://3.bp.blogspot.com/-YgHdI1Zurq8/VwAWNHeyxWI/AAAAAAAAEWQ/HFO5GnJP1gIV-wTX_E4qRbEX_H5IuUC4g/s640/1b851231d0c3cb2e038da4f5a6898f63.jpg" width="598" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Every 10 minutes, someone is added to the National Transplant Waiting List. As of today, there are 121,235 people waiting for a life saving transplant. On average, 22 people die each day while waiting for a transplant. One organ donor can save 8 lives. You can learn more at the Donate Life America website.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><a href="http://donatelife.net/" target="_blank">http://donatelife.net</a></span></div>
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<a href="https://4.bp.blogspot.com/-5Q8uE8NTdUE/VwAXfMsY6vI/AAAAAAAAEWU/dpRnmS8l6moWqsYEI5wUfZdxaq_8Tpyng/s1600/DoNotStand.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="515" src="https://4.bp.blogspot.com/-5Q8uE8NTdUE/VwAXfMsY6vI/AAAAAAAAEWU/dpRnmS8l6moWqsYEI5wUfZdxaq_8Tpyng/s640/DoNotStand.jpg" width="640" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">"Tears in Heaven" - Eric Clapton</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-69232740403887212652016-03-24T19:16:00.003-05:002016-03-25T11:48:18.227-05:00DATES I WILL NEVER FORGET!<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "trebuchet ms" , sans-serif;">Dates. We all have dates that are important to us; birthdays, anniversaries. For a transplant patient, there are likely many dates we will never forget. At least that’s the case for me. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><u>November 11, 2013</u> - That was the day I woke up coughing and believed I had developed a cold. Over 3 months, there were multiple hospital stays trying to find out what was wrong with me.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><u>December 2-9, 2013</u> - Spent i</span><span style="font-family: "trebuchet ms" , sans-serif; text-align: center;">n Lutheran General Hospital Seeking a Diagnosis.</span></div>
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<a href="https://1.bp.blogspot.com/-yXzxAQbpFwI/VvR8Y2wk3tI/AAAAAAAAETc/ojF4AQOyU-s34nguJExRqCtHv0dMEeW6A/s1600/IMG_0151.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://1.bp.blogspot.com/-yXzxAQbpFwI/VvR8Y2wk3tI/AAAAAAAAETc/ojF4AQOyU-s34nguJExRqCtHv0dMEeW6A/s320/IMG_0151.JPG" width="320" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><u>Feb. 11, 2014</u> - That was the day I flew to the Mayo Clinic looking for a diagnosis. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><u>Feb. 12, 2014</u> - The day that changed my life forever. I finally received a diagnosis. I was told I had Idiopathic Bronchiolitis Obliterans. I was also told I would need a lung transplant to save my life.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Flying to the Mayo Clinic in Rochester, MN</span></div>
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<a href="https://3.bp.blogspot.com/-jVRWW7HKCGg/VvR81GaWwBI/AAAAAAAAETg/LAtrLlQ0pRAyz5qs65KKHKaJZ1K4pGrLA/s1600/IMG_0160.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-jVRWW7HKCGg/VvR81GaWwBI/AAAAAAAAETg/LAtrLlQ0pRAyz5qs65KKHKaJZ1K4pGrLA/s320/IMG_0160.JPG" width="240" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><u>April 1, 2014</u> -The day I got to meet with the Transplant Doctor here at Loyola to discuss my case. I still contend my referring Pulmonologist just pestered him until he agreed to see me. But I am forever grateful that he did.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Waiting to See the Doctor at Loyola</span></div>
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<a href="https://1.bp.blogspot.com/-vcdkdNSxRuM/VvR95MebSDI/AAAAAAAAETs/Kj2tnBlzujoJOcyKAd1tLnu77hY4-lhbw/s1600/IMG_0774.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-vcdkdNSxRuM/VvR95MebSDI/AAAAAAAAETs/Kj2tnBlzujoJOcyKAd1tLnu77hY4-lhbw/s320/IMG_0774.JPG" width="240" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><u>June 10, 2014</u> -The day Loyola called me to tell me I had been accepted as a transplant candidate and was now listed with UNOS for a lung transplant! Then the waiting began. </span></div>
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<a href="https://3.bp.blogspot.com/-8v9K9_JjJb4/VvR-H5HpB7I/AAAAAAAAETw/7wVkViTXpxIB1VAjfltupxVcWKafkdj9A/s1600/11831637_10203659858411996_3142979131232971418_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-8v9K9_JjJb4/VvR-H5HpB7I/AAAAAAAAETw/7wVkViTXpxIB1VAjfltupxVcWKafkdj9A/s320/11831637_10203659858411996_3142979131232971418_n.jpg" width="320" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><u>Nov. 2, 2014 11:30PM</u> - on a Sunday night and my cell phone rings. As all Loyola transplant patients know, you get to know a Loyola phone number and when I looked at my phone I knew it was Loyola. My Mom came running down the hall because she instinctively knew that late on a Sunday who else would be calling. It was THE call; get to Loyola as safely and quickly as possible. We have a lung for you. My family went into overdrive getting everything together and notifying other family members that my turn had come and off we went into the dark night to Loyola. I was anxious, and I’ll admit to being scared and it felt so surreal. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><u>Nov. 3, 2014</u> -Is the official day that I received the ultimate Gift of Life and my new lung was transplanted. This date is now my Re-Birthday and my family and I celebrated with a quiet family dinner this new important date in my life. We also took a moment and raised our glasses to honor my donor and donor family who made that day possible.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">First Time Out of Bed & Sitting in a Chair Post Transplant!</span></div>
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<a href="https://4.bp.blogspot.com/-6UXQWvQB-hA/VvR-qQGECtI/AAAAAAAAET0/pq_5KHURqqk3HpQpdKqPkFzzQ1__Jt1nw/s1600/FullSizeRender.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-6UXQWvQB-hA/VvR-qQGECtI/AAAAAAAAET0/pq_5KHURqqk3HpQpdKqPkFzzQ1__Jt1nw/s320/FullSizeRender.jpg" width="240" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><u>Nov. 11, 2014</u> - Only 8 days post transplant (and one year to the day that I woke up with that cough) I was discharged and got to go home. I felt like the luckiest person in the world. Slowly I began my recovery and rehab. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Going Home Only 8 Days Post Transplant!</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><u>September 20, 2015</u> - 10 Months post transplant I participated in the Respiratory Health Association’s 3 Mile Hike for Lung Health in Lincoln Park. I had asked my younger brother to walk with me and he agreed. At the last minute my wonderful family surprised me and everyone who lives in the area walked with me in a show of support. I was also interviewed by two newspapers who told my story and helped raise awareness about organ donation and transplant.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">My Video of the Hike of Lung Health 3 Mile Walk!</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">This changed my life forever. These are the <u>Dates I Will Never Forget</u> as I got sick and went through the process of getting a diagnosis, Lung Transplant and working on my Recovery. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Grateful & Happy Post Transplant!</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-44760550827818435062016-03-20T12:21:00.000-05:002016-03-20T12:21:12.459-05:00SUNDAY'S INSPIRATIONAL POEM & SONG FOR THE DAY!<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "trebuchet ms" , sans-serif;">Let's never give in,<br />to complaints nor fear.<br />With our eyes on our goals,<br />the right direction we steer. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">No matter the circumstances,<br />with great effort we should always try.<br />We must pick ourselves up,<br />when we get bruised and we cry. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Opportunities are plentiful,<br />let's just open our eyes.<br />Our dreams we shall nurture,<br />as we stare to the skies. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">The trick is to create value,<br />that's honest and real.<br />By following our passions,<br />in our hearts, we shall feel. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">If we never hold back,<br />and just give it our all.<br />No challenge or obstacle,<br />shall ever be tall. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">by anitapoems.com</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">"Bridge Over Troubled Water" - Simon & Garfunkel</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The Many Battles I Fight Every Single Day!</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-62253876518004967322016-03-13T20:55:00.001-05:002016-03-13T20:55:12.543-05:00SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif;">"You Raise Me Up" - Josh Groban</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-66531484709266470482016-02-29T19:13:00.001-06:002016-02-29T19:13:13.141-06:00MAN, THIS IS HARD: REHAB & RECOVERY POST LUNG TRANSPLANT!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif;">Man, recovering from a Lung Transplant is HARD! Of course, no one said it would be easy. In fact we were told before transplant what to expect and that it would be hard. They did not lie!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">On March 3, 2016 I will be 16 months post transplant. I have been working so hard on my Rehab and Recovery and while I am doing better than I was a year ago, I am not making the progress I would like to be making.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Rehab started at home with a Physical Therapist coming to the house and starting to get me moving slowly. This lasted about 12 weeks. At that point I was told I was ready for Out Patient Rehab, so off I went to Rehab twice a week for 12 weeks also. It was challenging to say the least, but I kept at it and even if I didn't have Rehab, I would work on exercising at home; going for walks weather permitting or using the treadmill. But I was working hard and not just going to Rehab on Tuesday and Thursday. I was working out 5 days a week most of the time.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">As many who read my Blog know, by September 2015 I accomplished a goal I had been working toward by participating in, and finishing, the Respiratory Health Association's Hike for Lung Health 3 mile walk. I had done 3 miles in getting ready for the event plenty of times, as I should while preparing for the walk. It should have been "a walk in the park" (that's a joke; it was held in Lincoln Park in Chicago). But it was SO challenging I wasn't sure I'd finish, although I did.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">As I reached my One Year Anniversary and realized I had been working out for a year, but didn't feel I was where I should be, I talked to my Rehab Team and they recommended a special program offered at their Health Club for patients that have been through difficult surgeries, strokes and the like; been through Rehab but felt they needed more. It was affordable, so I signed up.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I got to meet with a Trainer who discussed my medical situation and what I was having trouble with, he put together a customized training routine for me and for the first 30 days I got to have a trainer work with me two days a week at the Club when I would work on this routine.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I have been doing this now for 3+ months and I have mixed feelings about how I am doing. I push myself, asking to be shown how to use different equipment for my Cardio workouts and I am pushing myself on the Strength Training the Trainer put together for me. Yesterday was a big accomplishment as I tried for the first time since I started to go through my Strength Routine TWICE! So I did the full routine once, then went back and repeated the whole routine a second time. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Today I am very, very sore and tired. I am scheduled for a "day off" from working out today, but I went to the Grocery Store. As I pushed my cart up and down the aisles, I felt SO winded and by the time I got home, I just collapsed. Maybe doing it twice wasn't such a good idea. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This is where my frustration comes in. I've been working so hard, that it seems I should be seeing improvements in the simpler things that have been so hard. I had to go to the lab for some blood tests this morning and just walking into the building from my car - NOT far - had me so out of breath I had to sit down. With all I do working out 5 times a week for a year, not to mention following this training program for 3+ months, a short walk like that shouldn't be SO hard. I expect to get winded working out, but not doing normal, "easy" everyday things.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But it is frustrating to feel I am not progressing the way I feel I should. I know it's only been 16 months since transplant, but other patients who are post transplant fewer months than I am, are doing all sorts of challenging activities, like the Respiratory Health Association's Hustle Up the Hancock fundraising event, climbing 1,632 stairs to the top of Chicago's famous John Hancock skyscraper! I have to sit down after I just climb the stairs to my bedroom (13 stairs)! </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I have been dedicated and committed to my workouts, going 5 days a week for months. Yet I am struggling to make progress and see things get at least somewhat easier as I continue to work out.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm not giving up. I intend to complete this 6 month training program and see where I am at that point. I will never stop exercising as I do not ever want to go backwards to being as de-conditioned as I got while waiting for my lung. I have been told some patients only achieve a certain level of recovery and that may be the case with me. I'm not going to throw in the towel, but what I wouldn't give to see simple tasks not be so hard. Then I would feel all my hard work was paying off. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But persevere I will. I will keep exercising, even if it's just to maintain a certain level of fitness. I didn't get this lung to be a lazy couch potato. So while how much progress I make remains to be seen, I will never give up and always keep fighting to get as fit as I possibly can. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But yeah; Man This is Hard!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">My Workout Video: Rehab & Recovery</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Walking on the Treadmill: 3.0 Miles in Less than an Hour!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Rode the Upright Bike for 1 Hour!</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com1tag:blogger.com,1999:blog-5214462278620754350.post-48412514977882740532016-02-07T13:42:00.000-06:002016-02-07T13:50:18.571-06:00SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "trebuchet ms" , sans-serif;">I haven't posted one of my weekly Inspirational Quotes in a long time. I've been struggling myself with anti-rejection medication side effects, lots of testing and medication changes. My meds also effect my emotional state in a big way. The Transplant Team is trying to help me with that, but they warned us that this could happen and they were right. I don't like it one bit. Everything - good, bad or even happy - causes a response that is WAY over what is called for. I don't like living like this. These drugs are saving my life, but they're making me a crazy person. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">So I am in need of a little inspiration myself.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">"Somewhere Over the Rainbow" - Israel Kamakawiwo'ole</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com4tag:blogger.com,1999:blog-5214462278620754350.post-17536198606742533362016-01-26T12:53:00.000-06:002016-01-30T21:30:12.218-06:00WORKING HARD AT TRANSPLANT RECOVERY!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "trebuchet ms" , sans-serif;">Being an IC patient was challenging enough and made exercising very difficult. But now also being a Lung Transplant Patient, exercising has become so difficult, it would be so easy to just quit and give up.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">My IC definitely does not enjoy my workouts, but I must just deal with the bladder pain if I am to recover from being sick for so long and becoming as deconditioned as a person can be. I want my strength back. I want to be able to regain my independence and do things on my own. I want to be healthy and not a lump in a chair. I did that when I was sick. But now I am so determined to workout and do the very best I can to regain as much strength as possible.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">My Transplant Coordinator told me it's possible I have reached a plateau and this is as strong as I will get. But she also said it's very possible if I keep doing what I'm doing, which they strongly encourage, I can regain more of my strength. Maybe I won't be like I was before I got so sick, but any improvement will be positive.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I have joined a Health Club affiliated with the hospital where I did my Rehab and they have a special program for patients who have had serious surgeries, strokes and the like. I decided to join. I got to meet with a trainer, who evaluated me and put together a strength training program customized for my needs post transplant.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I am working diligently at this program and on the days I don't do that workout, I go and do cardio, either on the Treadmill, the Recumbent Bike or various other machines. I am trying to go 4-5 days a week. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">It has been SO hard that there were days I felt like crying and just giving up. But I am trying to focus on the positive. Before my transplant, none of this would have been possible at all. So, while it's hard and there are days I feel I'm not making any progress, I try to remind myself of where I was before and I am grateful I can do this at all.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Today, at the Club, there was a gentleman in need of a wheelchair, on oxygen and using one of the machines I used when I had to go to Pre-Transplant Rehab and I nearly broke out in tears. That was me a little over a year ago. So I can whine about how hard this is, but I look at someone like that and it reminds me of how far I have come. And how grateful I am. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I am committed to keeping up with this training program and seeing how much progress I can achieve. And no matter how much progress I make, or don't, I must keep working out in order to prevent me from going backwards to where I was Pre-Transplant. So this is a new way of life for me. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I had a good Cardio workout today doing 30 minutes on on the Nu-Step machine and 30 minutes on the Recumbent Bike. Tomorrow I will do my strength circuit. I have 2 off days scheduled this week which means my goal is to workout 5 days this week. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Like I mentioned, my IC bladder doesn't like this one little bit. It's a struggle, but my post transplant rehab must take priority. So I push on through. I listen to my body and if I need an "easy" day, that's what I do. If I feel I can push it one day, then I do that. I mix things up so I'm not doing the same thing every day and that keeps it interesting.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Music helps me and after all I've been through, I don't care if people stare at me in my face mask, fist pumping to one of my motivational songs while working out. I've busted my butt to get where I am. So whatever I need to do for inspiration and to keep me fighting, I'll do! Like they say, dance like no one is watching. That's me at the Club!</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Check out my Workout Video:</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Today's Nu-Step Workout:</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Today's Recumbent Bike Workout:</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">BE AN ORGAN DONOR!</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-48025491339714681492016-01-01T14:44:00.001-06:002016-01-01T15:05:24.057-06:00A NEW YEAR BEGINS & IT'S A BLESSING!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif;">Happy New Year one and all! I wish everyone a happy, <u>healthy</u> New Year! As we rang in the New Year last night and I woke up to the year 2016 this morning, I just find it difficult to express my gratitude that I am here and able to celebrate with my family & friends.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I have had the most challenging 2+ years of my life. Finding out I needed a life saving Lung Transplant is not something anyone ever expects to hear. I will never forget being told that news up at the Mayo Clinic. I have never been so shocked in my entire life.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I've written before about what the process is like so I won't go through it all again. But I have been through more than I ever believed I could get through. But I got my lung, got through the surgery doing better than any of the doctors thought I would.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It takes a LONG, LONG time to recover from a transplant and I have been diligently working on my rehab and getting my strength back. It's hard work, but it's important to me and I am dedicated to sticking with my rehab program. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Part of My Rehab Routine!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">My Amazing Family Walking the Hike for Lung Health</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">for the Respiratory Health Association in a Show of Support for me!</span></div>
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<a href="http://4.bp.blogspot.com/-0mGFwN5Ox8k/VoaZe4bsu8I/AAAAAAAAEMM/zmhgq0rXrDE/s1600/12004838_10102102816540919_3700254053251689793_n-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://4.bp.blogspot.com/-0mGFwN5Ox8k/VoaZe4bsu8I/AAAAAAAAEMM/zmhgq0rXrDE/s400/12004838_10102102816540919_3700254053251689793_n-1.jpg" width="400" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">It is a long and never ending journey being a transplant patient. Struggling with medication side effects (which I am) is bigger than I can explain. The Transplant Team warned us that having a transplant can be a life saving procedure, but they also told us we would be trading one disease state for another with all the medications we must take. The were right.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Thank heaven for patient family and friends because some of that medication can turn you into a raging crazy person one minute, a crying baby another and a manic happy freak the next! </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">As 2016 starts I have SO many people to thank for all their support and encouragement. I thank my medical team at Loyola who literally saved my life and continue to care for me post transplant; my family without whom I literally could not have done this; so many friends who have stood by me and just called to chat and cheer me up as I waited for "The Call". Without all of you I would not be here.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">My wish for 2016 is that we can get some sort of control over all these side effects. I want to make more progress on my rehab program. On Monday I go for my 3 month Transplant Clinic visit and I'll get checked out thoroughly. I must go for these check ups every 3 months for the rest of my life. But it's how we keep track of how I'm doing and making sure there are no signs of rejection.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I am so grateful and blessed for being able to celebrate another year. I am hopeful 2016 will be a year of doing well and continuing to improve. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">HAPPY NEW YEAR to everyone!</span></div>
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<a href="http://4.bp.blogspot.com/-5hTtstu6hpA/VoaYZyFl70I/AAAAAAAAEME/HrWYNuaFV2Y/s1600/Screen%2BShot%2B2016-01-01%2Bat%2B9.16.24%2BAM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-5hTtstu6hpA/VoaYZyFl70I/AAAAAAAAEME/HrWYNuaFV2Y/s1600/Screen%2BShot%2B2016-01-01%2Bat%2B9.16.24%2BAM.png" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Auld Lang Syne - </span><span style="text-align: left;"><span style="font-family: Trebuchet MS, sans-serif;">Mairi Campbell</span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">There is just something about this version that I love!</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-60732398676964884862015-12-25T16:00:00.004-06:002015-12-25T17:01:01.594-06:00WHAT CHRISTMAS MEANS TO ME!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif;">Merry Christmas! We say it so offhandedly during the holiday season, often almost without thinking. And I say it sincerely to all who are reading this Blog. We mean it and we mean well. For many it is a religious celebration, for others not. But when we tell someone Merry Christmas it is usually meant as a happy greeting and I believe it is.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Since I got sick with that mysterious lung disease two years ago, got listed and waited for my lung transplant and then was blessed to receive the Gift of Life 13 months ago I find myself feeling much gratitude all the time. But most especially at Christmastime, I really feel the gratitude and very blessed to be able to spend time with my family and friends.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This is the first year I have been well enough to enjoy Christmas with my family. It has been and continues to be a very special day for me and my family. I have an appreciation for the gift I received and while I think of my donor often, today I have given a special moment quietly to myself to think of my donor with much gratitude. This is likely not as special a Christmas for his family as it is for mine and so I honor my donor and his family on this special day. If I could see them in person, I would want to give them a hug and thank them for supporting their son's desire to be an organ donor. It has been and will forever be, the greatest gift I have ever received.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This is a special time of year already, as we all gather (when possible) with family and share gifts and be together. It's a time when we all actually stop and take the time to be with those we love and celebrate our traditions and families. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">For me, this is just magnified this year. 2015 has been so very special. I have continued to recover and work on regaining my strength and celebrate the One Year Anniversary of my transplant. And to be able to celebrate Christmas this year is so very special. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">At breakfast this morning we raised our juice glasses in a toast of Merry Christmas and I thanked my family for all they have done for me for the past several years. Now, as we enjoy some pre-dinner celebration, those who can have raised a glass of champagne, while I raised a glass of sparkling cider in a toast of the day. Merry Christmas! We are all sitting together on the couch, all squeezed in tight watching my niece's favorite movie (she is a movie major). It is a small thing, but two years ago it was something I was unable to do. Just to be able to sit with my family and enjoy what we like to enjoy is so very meaningful to me and I don't take it for granted.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It's Christmas Day! A day to celebrate the meaning of Christmas (whatever that means to you). But it's a special day to take the time to be thankful for those we love, thankful for all our blessings and even have some fun and exchange gifts and celebrate our family traditions.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I have a new tradition every day, but at Christmas it takes on special meaning. We exchange gifts at Christmas, but I already have the Greatest Gift of all. I got my Lung Transplant and I am alive to celebrate Christmas with my family. It is a great day and I am so happy to be able to sit with my family, reminisce about Christmases past, laugh and relax and enjoy the day.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Christmas has always been a special time for me and my family. It has become even more special since I received my lung. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So on this Christmas Day, I give thanks most of all to my donor and his family. I give thanks to the medical team that has taken care of me and literally saved my life. I give thanks for a wonderful family that has gone above and beyond and supported me through the worst time of my life. I am blessed and grateful on this Christmas Day. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I will work hard to keep this spirit in me every day throughout the rest of the year. We talk about that, many of us; keeping the spirit of Christmas throughout the year. I will do my very best to honor and remember the great gift that I have received. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">To all who have supported me and my family, I thank you. This is such a special day and I am lucky to enjoy it. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Merry Christmas to all. May you all feel the true spirit of the season and enjoy your day however you celebrate Christmas!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Standing by our Tree!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">"White Christmas" - Bing Crosby</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-80715694841131725232015-12-20T18:03:00.000-06:002015-12-20T18:03:30.691-06:00SUNDAY'S INSPIRATIONAL QUOTE FOR THE DAY!<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "georgia" , "times new roman" , serif;"><u>THE UPSIDE OF DOWN</u></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">I'm bound for a place called The Upside of Down</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">It isn't a city nor is it a town.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">It's a chink in the darkness where the light filters in</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Or the hint of a smile turning into a grin</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">I'm searching and seeking Oh! Where can it be?</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">An astonishing find - it is hidden in me.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The Upside of Down is the yes side of no.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">It's just round the corner I'm ready to go.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">I'll get there much sooner if I don't hesitate.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Now is the time - before it's too late!</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">For the Upside of Down will not come into view</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">If I don't lift my head and decide what to do.</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-41699858875940406362015-12-15T20:42:00.000-06:002015-12-15T21:04:54.044-06:00THE GOOD, THE BAD AND THE UGLY!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "verdana" , sans-serif;">It's that time of year when we reflect on that for which we are grateful. We spend time with those we love and share time and gifts, give to those less fortunate, put up decorations and enjoy the season. I am doing all those things. I am so grateful to be able to say that I have passed the one year anniversary of my Lung Transplant. This Christmas season is so very special for me this year. It's the first time in 3 years that I have been well enough to enjoy it. We decorated the house a few weeks ago and it made me so very happy and joyous that I was here and well enough to participate. Some nights I just sit in the living room, lit only by the lights on the Christmas tree and mantle with a smile on my face enjoying the decorations and feeling of the season. For the first time in 3 years, I have also been able to return to one of my loves of the season: baking. While it's still hard to stand for long periods of time, I have been able to bake up some cookies and make some candy and will gift them to friends and share with family. The sense of accomplishment of being able to bake this year is big. It made me very sore, but very happy!</span><br />
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<span style="font-family: "verdana" , sans-serif;">That's the good!</span><br />
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<span style="font-family: "verdana" , sans-serif;">Unfortunately, even after 13 months of recovery and working hard at rehab, I am not fully recovered from the transplant. I keep getting told not to forget what kind of surgery I endured and how long I was unable to move around and needed a wheelchair, which de-conditioned me so much that I could not stand unassisted. So rehabbing from that level of de-conditioning isn't going to come easy or quick. It's frustrating but I am determined to keep at it and keep trying. I am working with a trainer who put together a training plan for me that I hope will help me regain my strength and help with my breathing. I still can't climb the stairs to my bedroom without falling to my knees at the top and huffing and puffing to catch my breath. I want better. I'm impatient I know. The same was true of my baking for Christmas. On just one of the days I baked, I was on my feet for 5 1/2 hours straight plus bending over to decorate the cookies. My back was killing me when I was done and I needed a two hour nap afterwards. Even when I come home from working out with the trainer, I am exhausted and need a nap. Yet I still have no trouble sleeping at night even after a 2 hour nap. I am determined to work to get stronger and healthier. But in the meantime, it's HARD work to do so many things still.</span><br />
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<span style="font-family: "verdana" , sans-serif;">That's the "bad".</span><br />
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<span style="font-family: "verdana" , sans-serif;">Then there are all the side effects from the medications I have to take to prevent rejection along with other things. We were warned before transplant, but all these meds wreak havoc with our emotional stability so it's like being on an emotional rollercoaster. Well, I'm on it and I can't get off and it doesn't take much for the ugly cry to show up. I've also been very frustrated with communication issues with the transplant team regarding various issues. I am working this out, but it's been challenging enough to deal with everything being a transplant patient means, adding other outside frustrations doesn't help.</span><br />
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<span style="font-family: "verdana" , sans-serif;">That's the "ugly"</span><br />
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<span style="font-family: "verdana" , sans-serif;">But ultimately, I am doing well. Better than I think anyone thought I would be doing and for that I am blessed and grateful. Often people think we get our transplant and if you're lucky enough to do well and get discharged and you look so much better, people think that's it. I'm fine. Unfortunately that's not the case. While I am doing well, there is always something to deal with. Side effects of medication is a constant. Dealing with kidney function problems that require IV Saline Infusions for 3 hours 3 days in a row; having a white blood count so low I needed medication injections in my stomach three days in a row. Being so immunosuppressed that I have had to deal with multiple infections and viruses, fevers and the like. It's not easy. But it beats the alternative.</span><br />
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<span style="font-family: "verdana" , sans-serif;">So I am so grateful this Christmas season and am savoring every moment. None of this would be possible without the support of my family and friends who have stood by me and supported me through the worst time of my life. You are all my rocks and I am so grateful you are all in my life and that I am here to enjoy time with you all. I'm having lunch with friends to celebrate over the next few weeks. Family time together for Christmas. </span><br />
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<span style="font-family: "verdana" , sans-serif;">I will probably write again on Christmas Eve/Day. But as the season is well underway, I wanted to write about what I am feeling during this special time of year. The good, the bad and the ugly. It doesn't matter. It's all good really, because I'm here.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Our Christmas Tree 2015!</span></div>
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<span style="font-family: "verdana" , sans-serif;">"Mary Did You Know" - Pentatonix</span></div>
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Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.com0tag:blogger.com,1999:blog-5214462278620754350.post-61288961000368087142015-11-25T10:39:00.000-06:002015-11-25T10:39:33.815-06:00HAPPY THANKSGIVING!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif;">As we all go through the preparations for celebrating Thanksgiving, I get teary eyed thinking about Thanksgiving this year. This is the first Thanksgiving in 3 years that I am well enough to enjoy the holiday and BE with my family. That's all I ever thought about when I was sick and waiting for my life saving lung transplant - more time with my family.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">To have that time now, just brings tears to my eyes when I think about where I was the past two years and where I am now. Last year I had gotten my transplant but had only been home from the hospital for about 10 days and stairs were still off limits so, while the family was in the house and they all brought my tray up to me, I had to eat alone and spend a lot of the day alone as they all worked to prepare our dinner.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This year I get to be with everyone and spend precious time with my family. I treasure that time more than I can say.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I have so very much for which to be Thankful that I will be thinking about tomorrow. I am thankful for a family that stood by me, supported me, encouraged me (still does) and STEPPED UP to help out while I was sick and recovering after I finally got my transplant. Without my family, it simply would not have been possible. I am blessed to have such a loving and supportive family and I am so grateful for each and every single one of them.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am so grateful for my organ donor and donor family. There really are no words that properly express how grateful I am that they believed in organ donation and gave me the ultimate Gift of Life. I would not be here without such generosity. I hope to meet my donor's family one day so I can thank them in person. But tomorrow, on Thanksgiving, I will have a quiet and special moment of thanks for my organ donor. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am thankful for how well I am doing one year post transplant. It's really hard to believe it has been one year since my transplant and to be doing as well as I am is a blessing. So many transplant patients struggle with so many complications. I have had some bumps in the road, but my lung is doing well and any of the issues I've had to deal with are medication side effects which my amazing transplant team always manages to get straightened out.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am thankful for the many doctors, nurses, and medical staff that took care of me pre-transplant, during my transplant and stay in the hospital and the post transplant team as well! Each and every single one of them has been wonderful, caring and literally life saving. Without them, I would not be here.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am thankful for all my wonderful friends who stood by me when I was sick and waiting for my lung. Many driving long distances to spend time visiting with me, keeping me company and doing their best to cheer me up and distract me for a period of time. It's a short list of people, but it's a high quality list. My friends called, visited, emailed and stayed in touch and supported me through the most challenging time of my life.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thanksgiving is a special holiday where we are supposed to take the time to acknowledge the things in our lives for which we are grateful. Being a Lung Transplant recipient really puts an added dimension to the holiday for me. I am thankful for the Gift of Life every single day, and I think of my donor every day, but I will really take time tomorrow to think about all the things I wrote about above and acknowledge what they all have done to help me get where I am!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So tomorrow, when I am with my family just hanging out, having dinner, there will so very much for which I will be grateful. I likely won't be able to get words of thanks to my family out without crying (I cry at the drop of a hat!), but they will be tears of joy!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thank you to everyone mentioned in this Blog; thank you to everyone who reads my Blog, follows me on Twitter and social media. I am SO grateful for this wonderful and special day. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">May you all have time with loved ones and take a moment to let those people in your lives know how important they are to you.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">HAPPY THANKSGIVING one and all!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Me and my Amazing Family!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">"The Thanksgiving Song" - Mary Chapin Carpenter</span></div>
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