Friday, June 16, 2017

THE JOURNEY THAT IS TRANSPLANT!

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.

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.


THE GOOD:

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!

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!

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:



As of today, there are 117,710 people waiting for a life saving transplant. Please sign up to be a donor today!

My First Walk Post Transplant!

My New License Plate in Honor of my New Lung!

THE "BAD":

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.

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.

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.

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.

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".

All My Meds!

EVERYTHING IN BETWEEN:

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!

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.

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!


Celebrating my 2 Year Transplant Anniversary Nov. 3, 2016







Wednesday, November 23, 2016

AN UPDATE - TO DO BLADDER INSTILLATIONS OR NOT AND MORE!

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. 
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!

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.



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.

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.

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. 

If you explore several different cocktails and none of them work, you may need a referral to a Qualified Pain Management doctor.

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!

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.
Video - Catheters 101



Video - Magic Catheters


Sunday, September 25, 2016

2016 HIKE FOR LUNG HEALTH!

Today was the Respiratory Health Association of Chicago (RHA) http://www.lungchicago.org 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.

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.

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.

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!

Here I am crossing the finish line, arms raised in celebration!

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.

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!


Check me out getting to meet Illinois Secretary of State, Jesse White
at the Hike and thank him for his support of organ donation!

Me and some of the hard working and wonderful ladies
of the RHA Staff before the Hike!

Me and Chair Elect of the RHA Board of Directors, David B. Yelin, Esq. 

Today was a great day for me and so many fighting lung issues and working to raise awareness and money for clean air! 

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!

No matter how hard or challenging, I will Never Surrender to it and keep on walking!

"Never Surrender" - Corey Hart




Wednesday, August 3, 2016

I CELEBRATE EVERY ANNIVERSARY & RAISING AWARENESS!

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!

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. 

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.

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.

The Respiratory Health Association Staff and I thank Representative Sam Yingling 
at our meeting to thank him for supporting Clean Jobs Legislation 


Thanked yesterday for supporting Clean Jobs legislation.

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. 


“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





Sunday, July 24, 2016

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

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. 

I have much for which to be thankful, so even though I have my struggles, I keep on going. 



"I'm Alive" - Celine Dion





Wednesday, July 20, 2016

ANOTHER YEAR OF LIFE!

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.

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.

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.

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. 

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.

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!

Blowing Out the Candle on My 61st Birthday Cake!



"Forever Young" - Bob Dylan




Sunday, July 3, 2016

NOBODY SAID IT WOULD BE EASY & HAPPY TRANSPLANT-AVERSARY!

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.

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.

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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.

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. 

Sometimes it's hard, but then nobody said it would be would be easy!


"Fight Song" - Rachel Platten