WHAT CHRISTMAS MEANS TO ME!

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.

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.

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.

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. 

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. 

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.

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.

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.

Christmas has always been a special time for me and my family. It has become even more special since I received my lung. 

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. 

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. 

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. 

Merry Christmas to all. May you all feel the true spirit of the season and enjoy your day however you celebrate Christmas!

Standing by our Tree!

"White Christmas" - Bing Crosby

SUNDAY'S INSPIRATIONAL QUOTE FOR THE DAY!

THE UPSIDE OF DOWN

I'm bound for a place called The Upside of Down

It isn't a city nor is it a town.

It's a chink in the darkness where the light filters in

Or the hint of a smile turning into a grin

I'm searching and seeking Oh! Where can it be?

An astonishing find - it is hidden in me.

The Upside of Down is the yes side of no.

It's just round the corner I'm ready to go.

I'll get there much sooner if I don't hesitate.

Now is the time - before it's too late!

For the Upside of Down will not come into view

If I don't lift my head and decide what to do.

THE GOOD, THE BAD AND THE UGLY!

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!

That's the good!

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.

That's the "bad".

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.

That's the "ugly"

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.

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. 

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.

Our Christmas Tree 2015!

Our Fireplace Mantle

"Mary Did You Know" - Pentatonix

HAPPY THANKSGIVING!

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.

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.

This year I get to be with everyone and spend precious time with my family. I treasure that time more than I can say.

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.

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. 

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.

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.

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.

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!

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!

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. 

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.

HAPPY THANKSGIVING one and all!

Me and my Amazing Family!

"The Thanksgiving Song" - Mary Chapin Carpenter

ONE YEAR POST TRANSPLANT AND THINGS ARE LOOKING GOOD!

It's been a good few weeks (to make up for the crappy two I had earlier this month). First I got the good report on my last Bronchoscopy; all test results negative. I no longer have to have them every three months; in fact I don't have to have them unless the Transplant Team suspects there is an issue that needs to be checked. This week I had follow-up blood work to check my kidney function. It's finally dropped down below the "magic number" so that's good news!! I haven't had to have any infusions for weeks but my count has continued to drop (this is a good thing).

We have no way of knowing how long my kidney function will stay like this. My Coordinator still has to talk to my doctor about all the lab results and see about a plan. It's unlikely my kidney function will stay this way long term, so she wants a plan for how often to check things. I was told this is likely how things will go for me. Probably be a roller coaster where the kidneys are concerned but they always seem to get things back on track, so I have confidence that they can manage the situation.

I kicked butt at my 6 Minute Walk yesterday. So that feels good. I am still struggling with my fitness level and how I feel when exercising. I know I've made progress, but I don't feel I'm where I should be one year post transplant. So the hospital where I went for my Rehab also has a program and Fitness Center where you can get a 6 month program at a deep discount (since that's where I did my Rehab). I'll get a consultation with one of their Trainers, they'll evaluate me and make a plan for me to follow. Then I can use the facilities for working out and following the plan put together for me. They also have a salt water therapy pool and I asked my Transplant Coordinator if I can use it and was told yes! So I look forward to that. I am optimistic about making the progress I'd like to. I'm willing to put in the work if I can get back to a more "normal" fitness level. I may never get back to feeling or being like I was before my transplant, but I'm going to try to make as much progress as I can!

There will always be some sort of issue and I am getting used to that. It was something I've struggled with since the transplant. Learning to cope with issues like the kidney function, which is kind of scary, is difficult, but I've been talking about these issues with my psychologist and it's helping. Plus I think, as with many things, I'm just getting used to what it's like to be a lung transplant recipient.

This has been a journey that is very hard to put into words. But, even with the bumps in the road that I've had to deal with, I am really doing quite well. The Transplant Team is very pleased and that says that a lot to me. My lung is doing great. Any issues I've had have all been side effects from medication, which the Transplant Team always seems to be able to manage. I can't complain. In fact, it's really all good news after one year. I can't believe a whole year has passed and here I am, doing well.

Two years ago I'd been sick for about a week at this point. By December I was in the hospital and by February I was at Mayo getting my diagnosis and learning I would need a Lung Transplant. I never thought I could handle what one has to go through with a lung transplant, but I did it! I got through it and thanks to my donor, my life was saved and now one year later, I drove myself to an appointment yesterday and one today - not very far from home, but I did it. Really proud of myself.

Yes, one year post transplant, things are looking good!

IT'S MY "RE-BIRTHDAY" - HAPPY 1 YEAR ANNIVERSARY!

One year ago today I was re-born. Thanks to the ultimate Gift of Life from a 22 year old young man who believed strongly in organ donation, I am here today to celebrate the One Year Anniversary of receiving my Lung Transplant! I said at the time I felt "Re-Born" and we started talking about making it to one year and celebrating my "Re-Birthday".

It has been a very long 2 year journey to reach this very special day for me and my family. Being a Lung Transplant candidate and, if one is lucky enough to get their lung, a Lung Transplant Recipient, is not easy and it is not fun. As my Transplant Doctor said to me the very first time we met: "While a Lung Transplant can be a life saving operation; make no mistake, you are trading one disease state for another because of all the medications you will have to take."

He wanted me to understand - truly understand - what I would be facing if they accepted me into their Lung Transplant Program. The side effects from all the medications can cause real problems for transplant patients and I am dealing with a number of those today. 

As I sat through 4 different Transplant Education Classes before my Transplant, we found out the cold hard truth of what it's like to go through the surgery, recovery and rehab. What we must expect being immunocompromised. All the lifestyle changes we must make, that you would never think of, if we want to keep our Lung healthy and prevent rejection. 

One of the things about having a Lung Transplant is that they are the most difficult transplant to perform and they have the least successful outcomes. We are told this before we get listed for transplant. I tease my Transplant Team that they like to scare us to death before our transplants, and they admit they want us to know what we will be facing post transplant.

I will admit to being very scared heading into my transplant surgery. It was 11:30PM on Sunday night, November 2, 2014 when I got "THE CALL"; they had a lung for me. We were to get to Loyola as quickly and safely as possible. Most of the next nearly 2 days I do not remember. They keep you sedated while you are on the ventilator to make sure all is going well, monitoring everything there is to monitor. I am told they tried to wake me once but it didn't go well, so they put me back to sleep for another day. The next time they were able to wake me without incident, but being woken up after a major surgery like a transplant is not like waking up from any other surgery. I was restrained so I would not unconsciously pull at any tubes. I was still intubated and on the ventilator; I had two chest tubes coming out of my side, a nasogastric tube so I would not aspirate into my beautiful new lung, and a IV going into my neck as well as multiple IV's in my arms.

I was lucky and doing well and it wasn't long after being woken up they were able to extubate me and get me off the ventilator. Shortly thereafter tubes began coming out one by one. Chest tubes were removed, the IV in my neck, some of the IV's in my arms though not all. The ng tube was pulled. And as each tube came out, the discomfort they caused eased. However, the pain from the surgical incision was too much and required pain medication on a regular basis. 

They do not waste any time getting you up and out of bed. I believe it was Day 3 that they got me up and into a chair, even while I was still in the ICU. By Day 4 I was moved out of the ICU and to the Transplant Floor in the hospital. I started eating real food, sitting in a chair twice a day and the physical therapists began to show up to get me walking again. 

First Time Out of Bed!

This was HARD work. But if I was to recover, I had to do what the Transplant Team told me to do. But the amazing thing was, now I was doing all this without ANY oxygen at all! I was now able to breathe on my own from the first day I woke up! It was like a miracle. I had nearly lost my voice and was on 24/7 oxygen up until surgery day. When I woke up I felt like a normal person breathing again! It was amazing! I could talk again like I always did, which my family noticed immediately. 

My First Walk!

I worked so hard while I was in the hospital but the nurses and everyone kept telling me how great I was doing, and I guess I was, because only 7 days after receiving my lung transplant, Loyola discharged me! That's rare to get discharged so soon. Loyola's record for fastest discharge is 5 days, so for me to get to go home only 7 days after my surgery was amazing. 

Me Going Home!

Then we must begin the very long and slow process of Rehab and learning how to "live" as a Transplant Recipient. Rehab began slowly with a Physical Therapist coming to the house and having me do exercises laying on the bed. As I got stronger, he had me begin various exercises standing up. Finally after about 8 weeks, I was told I was ready for Out Patient Rehab, which would be 2 days a week for 12 weeks.

Out Patient Rehab Begins!

There was so much more to do as my recovery continued. My daily ritual that I am required to complete and track on a tracking sheet for the Transplant Team consists of taking my vital signs (weigh myself, take my temperature, take my blood pressure & heart rate and do my spirometry) every single morning. I also must be most vigilant about taking my medications every day, 4 times a day, and some are to be taken at very specific times! Then I must wait before I can eat. So I don't ever get to sleep in anymore. It takes about an hour to complete all my morning tasks and get my medication taken by the designated time.

Every time I leave the house, I must put on my mask to protect my lungs and me from either catching something from the people around me, or things blowing in the wind. I carry hand gel with me and religiously wash my hands or use my hand gel. You have to think about everything you touch, everything. Like money is one of the filthiest things we handle, so every time I touch money, I need to wash or sanitize my hands. It's amazing what I must be attentive to when I go out.

All of this has been and continues to be very challenging. One year later, my surgical incision still hurts. They tell me it can take from a year to a year and a half - or never - for that pain to go away. The medication side effects have caused numerous problems that have required constant monitoring, blood tests, infusions, shots in the stomach and antibiotics to name a few.

Getting an IV Saline Infusion for My Kidneys!

But getting to One Year Post Transplant is a big deal. While there are bumps in the road, and likely always will be, I have worked so hard to regain my strength and get back into decent physical condition after being sick for so long. I pushed myself, set a goal and as many of you know, I accomplished something that one year ago, I thought would be impossible: I participated in, and completed, the 3 mile Hike for Lung Health for the Respiratory Health Association on September 20, 2015! Only 10 months post transplant! And to make it even more special, my whole family surprised me and did the Walk with me in a show of their never ending support! It was such a special day for us all! To have faced death, struggled through surgery and recovery and rehab and be able to walk 3 Miles in less than 60 minutes is something I am so proud of! I wasn't sure I'd ever see a day like that again and it was one of the best days I've had since my transplant.

Video: The Hike for Lung Health

I have been struggling lately with some side effect issues, an infection, fever to name a few and have not been able to exercise for several weeks. It's been frustrating but yesterday and today I picked myself up, and went over to the Fitness Center and got myself back on the Treadmill for 30 minutes. As hard as it was, I am so glad I did it and proud that I keep fighting and working at being as healthy and strong as possible when you consider what I've been through the past 2 years.

My family and I are having a quiet but celebratory dinner tonight to mark this very special date in all our lives. I'm not the only one that this affected; my whole family went through this with me. So it's appropriate that we get together and have a nice family dinner, which is all I ever thought about when I was sick. Just more time with those I love and that's what I'm getting. 

I am truly lucky and blessed. Our thoughts and a toast will go out to my organ donor and his family in his memory. Without organ donors like the young man who donated multiple organs and saved multiple lives, I would not be here. I am forever grateful. 

A LOT SEEMS TO HAPPEN IN NOVEMBER!

I don't know what it is about November, but practically all my medical woes began or were diagnosed in November. Some bad, some good but I recently realized that November, which will be here in a few days, has many health "anniversaries" in it.

13 years ago this November I was diagnosed with a rare, incurable, painful bladder disease called Interstitial Cystitis (IC). To learn more about IC, check out the ICA website:  http://www.ichelp.org

Luckily, I was referred to one of the most excellent doctors in the field and this November it's been 13 years since I have been under his care. He has worked tirelessly to help my IC and get me some relief. If there was/is a treatment we tried it. Unfortunately, medication and I do not get along and all the pain meds that many IC patients take, I cannot. I finally opted for the InterStim Sacral Nerve Stimulator to help my frequency and we found the right instillation cocktail that helps my pain. I can even do them at home. Unfortunately, as hard as I tried, my IC and the associated pain and exhaustion from lack of sleep, forced me to apply for Social Security Disability (SSDI). My doctor wanted me to apply 2 years before I did, but I wanted to keep working. I tried for 2 more years before talking to my doctor and he actually told me he was glad I was going to apply and he would do all he could to help me. It's been a long and winding IC journey, but I am so lucky to have the doctor I have and can't believe I've been seeing him for 13 years in November!

Two years ago in November (November 11, 2013 to be exact) I woke up with a cough that seemingly came from nowhere. The cough got worse and worse and after seeing my Primary Care doctor multiple times, he wanted me admitted to the hospital. After a week in the hospital, all the tests were inconclusive. I was referred to many different specialists who were convinced they would figure it out but none of them ever did. By February, and another week long stay in the hospital in December, my doctor said he had a colleague up at the Mayo Clinic in Rochester, MN who had agreed to see me if I could get there. My family scrambled and we were at Mayo late afternoon the next day with all the tests and doctor appointment scheduled for the day after that. It was a trip well worth making, as I was finally given a diagnosis. Not one any of us expected to hear. In just 3 months I had gone from, being as OK as someone on SSDI could be to being told I had what was called Idiopathic Bronchiolitis Obliterans and that I would need a Lung Transplant to live before the end of the year in all likelihood based on how fast the disease was already progressing. I've never been more shocked and scared in my whole life. 

My doctor back home went to work trying to get me appointments with transplant doctors. The first one I met with turned me down and would not accept me into their transplant program. He said I was too complicated. But my doctor never gave up on me and got me an appointment with the Transplant Doctor at Loyola University. By this time it was April. Nothing in medicine seems to happen fast and I was getting sicker by the day. By this time I was on Oxygen 24/7 and could not walk without using a walker. If I had to go a long distance, I needed a wheelchair. Having to be pushed around in a wheelchair while pulling oxygen around with you is no small feat. I was finally accepted by Loyola  for a Lung Transplant and listed with UNOS in June 2014. So the waiting for my transplant began. Summer came and went as I waited very anxiously for a life saving lung transplant. It seemingly was never going to come.

But again, on Sunday, November 2, 2014 I finally got "The Call" (9 days short of one year since waking up sick); they had a lung for me and I was to get to Loyola as safely but as quickly as possible. The official date of my transplant is November 3, 2014. So once again, another medical milestone in November. I'll be writing about my one year anniversary on that day.

But, whatever it is about November, lots of medical things seem to happen in that month. Of course there have been many more. I have been sick for 13 years now; dealing with my IC, then the Lung Transplant. 

Getting a Lung Transplant, or any organ transplant for the matter, is a major surgery. About as major as they get. I am still recovering but now I'm experiencing what the Transplant Team warned us about before our surgeries. Side effects from all the medications I must take to keep my body from rejecting my lung. Kidney function issues requiring IV saline infusions, low white count requiring medication injections in the stomach, constant blood tests. Getting sick because I am immunocompromised and running a fever; antibiotics for the infection I got. Taking 35 pills every single day. 

Yes, November seems to be a very popular month for me to get sick, have surgery etc. There is always something going on since my transplant all year long: a bronchoscopy every 3 months, a Clinic visit with my team every 3 months for life, scheduled and unscheduled blood tests, reacting to problems that arise. It's never ending. 

Don't get me wrong. I am blessed and thankful to be here and treasure the Gift of Life I was given. But often people think, we get our transplant, take our pills and all is fine. If only that were true. As the doctors explained, we will be facing a whole new disease state from all the medications we must take and it's challenging, not fun and some days you just don't feel like being a pin cushion, or having a tube shoved down your throat to check your lungs and make sure there is no infection or rejection. Some days you just want to be normal again. But if I want my lung to stay healthy and stick around for a long time, I must do whatever the Transplant Team tells me to do. 

I'd like to stop the November trend. Unfortunately, as I move forward as a Transplant recipient, there will be plenty of doctor, labs and hospital visits for the rest of my life. So I am learning to adjust. Some days are better than others. I'm getting used to it; well, I'm working on it!

Diagnosed with IC/Volunteered for ICA as Patient Advocate

Lung Transplant 

Rehab

The Hike for Lung Health

The Horine Family All Supported Me!

Be an Organ Donor!

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

"What A Feeling" - Irene Cara

IT'S NOT LIKE THEY DIDN'T WARN ME!

Before you get accepted as a Transplant Candidate, you go through a lot. You meet the Transplant Pulmonologist, go through a battery of tests that take over a week. Some centers require we attend pre-transplant education classes, which I did. And if you're lucky, you get accepted for that life saving transplant and put on the UNOS Transplant Waiting List. And the waiting begins.

Part of that process, the very first meeting with the Transplant doctor and the pre-transplant education classes, is where you learn what having a Lung Transplant REALLY means; what it's really like. Frankly, they basically scare you to death telling you what to expect before, during and after. I will never forget the very first words the doctor said to me at that first meeting. "While transplant can be a life saving operation, make no mistake, you are trading one disease state for another."

Trading one disease state for another. Those words ring in my ears to this very day.  And the doctor did not lie. He was right to warn me what to expect, especially since I hate surprises anyway. I knew what could happen, what to expect. I was prepared for the possible negative issues that could come up post transplant. Or so I thought.

I keep telling myself, it's not like they didn't warn me. I should not be thrown or upset when I get told I'm battling to keep my kidneys functioning and trying to avoid kidney failure. After three rounds of IV Saline infusions to treat elevated kidney function levels, I should be taking it in stride. It's not like they didn't warn me. Easier said than done it turns out.

I should be prepared when I get told that my White Blood Cell count is way too low, even for a transplant patient. We were told ahead of time that the anti-rejection medications might affect our kidneys and our white blood count. So I shouldn't be surprised. It's not like they didn't warn me. Again, easier said than done.

The fatigue, headaches, tremors, getting back in some sort of physical shape, dealing with post surgical pain nearly a year after surgery that you find out may take a year to a year and a half - or never - to go away. 

I keep telling myself how much I have for which to be grateful. I am still alive and a year ago that was no sure thing. I have been blessed with the Gift of Life from someone who believed in organ donation and saved my life. I am happy about that.

But then the medications start to do what they do, and all the side effects you are warned about start rearing their ugly head. Emotional swings. And as time goes by, reality sets in about dealing with some of the more serious side effects. 

Being a transplant patient means we must endure a lot. Lots of pain, lots of blood tests, lots of being poked and prodded. A Bronchoscopy every 3 months for the first year post transplant. 

IV Infusions multiple times. Now injections to help raise my white blood count to an appropriate level and hope in the meantime I don't catch anything from anyone. I am more at risk now than I was post transplant. 

I should take it all in stride. Again, easier said than done. I trust my Transplant Team. They know their stuff and are monitoring me and taking action when appropriate. But there are those moments that just scare you as much as you were scared waiting to see if you'd get your transplant. I have faith most of the time. But then sometimes when I realize the challenges I am still facing, it hits me. And I get scared and anxious.

I am positive and grateful most of the time. But then when the next thing comes up that is serious enough it needs treating, anxiety sets in. Then I'll remember how knowledgeable and talented my Transplant Team is and I feel better. I ask lots of questions and the answers make sense. Then late at night, I worry. 

It's a roller coaster ride for sure. So many ups and downs, twists and turns. And it's a ride I'm not allowed to get off. I have to learn to live on the roller coaster. 

It's not like they didn't warn me. But sometimes knowing what could happen and then being faced with what IS happening is a whole different ballgame. But I'm working on it. Trying to be strong and learn to roll with the punches. I'm not very good at it, but I'm trying.

SUNDAY'S INSPIRATIONAL QUOTE & SONG" FOR THE DAY!

I love this quote. I have faced so many challenges that it would have been so easy to just give up. When I was told I needed a Lung Transplant to live, I went through a phase of thinking there was no way I could handle that. But I wanted life more. So I chose to fight. This quote speaks to me about my struggles both pre and post transplant.

11 Months Post Transplant

After my 2 Mile Walk!

"Bridge Over Troubled Waters"  - Simon & Garfunkel

SUNDAY'S INSPIRATIONAL QUOTE FOR THE DAY!

Yesterday it was 11 months to the day since I received my Lung Transplant. 11 Months. 30 more days and I hope to celebrate the One Year anniversary of receiving the Gift of Life. I have a bazillion tests over the next few weeks to check how things are at one year. I am expecting good news, since things have been going well so far. I am working hard on my exercise rehab and doing all the doctors require of me. I'll be counting the days until my one year anniversary like a child counts the days until Christmas and hoping all those tests will be the best presents I could get!

5 WEEKS & COUNTING!

On one hand, I don't know where the the time has gone. On the other there have been times when I felt time stood still.

My Lung Transplant journey begin nearly 2 years ago on November 11, 2013. And now I am only 5 weeks away from the One Year Anniversary of my Lung Transplant.

I just received a letter from the Transplant Team with a long list of tests and doctor visits that I must schedule before or around my Transplant Anniversary Date. October will be a VERY busy month. I had to undergo all these tests before I was accepted for transplant, so it makes sense for them to want to repeat these tests and see where I am one year post transplant. 

Today I just got the results of some blood work I was waiting for and it was good news. Love getting good lab test results! There have been lots of blood tests in this transplant journey and so far most have been all good news. 

I am doing well and will be anxious for the results of all these tests I must have over the next 5 weeks. In November I will also have my one year Bronchoscopy. If all these tests go well, there will be good reason to celebrate.

That is my plan. From the day I got my transplant, I have been hoping to get to one year healthy with few issues and have a party with my family and friends to celebrate this major milestone. This has been a long and winding journey and the most challenging time of my life. But I have worked hard, done everything that was asked of me and am doing well. It hasn't been easy, but has been worth it. 

So the next 5 weeks will be filled with lots of tests and the hope I get all good results. I never mind getting tests. It's how we know what's going on. Is everything OK, or is there something we need to address? So I'm always on board with whatever testing the Transplant Team deems necessary. 

So bring it on! Let the testing begin. I have a One Year Anniversary Party to plan! 5 weeks to go!

Me, September 2015, 10 Months Post Transplant!

Me, September 20, 2015 - Finished the Respiratory Health Association's

Hike for Lung Health!

Check out my story on the Sept. 20, 2015 Hike for Lung Health

that appeared in the Sunday, Sept. 27, 2015 edition of the Lake County (IL) News Sun

http://www.chicagotribune.com/suburbs/lake-county-news-sun/news/ct-lns-lung-health-hike-st-0928-20150927-story.html

The Journey of a Lung Transplant Candidate Video

I DID IT!!

Yesterday was the Respiratory Health Association's Hike for Lung Health 3 Mile Walk, which I had signed up to do back in July. All along my younger brother had said he would walk with me to support me, motivate me and help me with water bottles, since I can't drink from the "community cups" along the course.

I have been training for months and fundraising like a madwoman! Wanted to win the #1 Individual Fundraiser spot. That's not going to happen but I'm #2 and pretty darn proud that I managed to raise over $2,600 for lung health, research and education!

Yesterday turned out to be extra special. This was to be a major accomplishment in my Lung Transplant Journey and I worked hard to be ready. But at the last minute my entire family told me they too were going to walk with me in yet another show of support, as they have done through this entire transplant journey. It made the day so special, fun and I felt so loved and supported.

The weather was spectacular which only added to make the day more special. I met a lot of wonderful people from the Respiratory Health Association and hope to help with their mission.

But as challenging as it was, I DID IT! I achieved my goal and completed the 3 Mile Walk, as did my entire family. What a great day! A year ago I was in a wheelchair on oxygen 24/7 waiting for my lung and couldn't even walk around my house. I got so deconditioned. Getting back in shape when you get that deconditioned, it's HARD work to regain your strength. This Walk was a motivator for me; something to work for.

I am proud of all I have accomplished. The work toward recovery is ongoing. I am not 100% yet and don't know when I will be, if I can ever can be "normal" again. But I will keep working hard on my rehab to regain as much strength as possible.

But I am so proud:  

I DID IT!

Video of Me & My Family Doing

The Hike for Lung Health!

MY JOURNEY: IT'S TIME TO DO THE HIKE!

Since my Lung Transplant on November 3, 2014, I have been working very hard to rehabilitate my body, which had become totally de-conditioned due to the lung disease I had gotten. It's a slow process, starting as soon as I woke up from my Transplant. The hospital gets you out of bed the very next day and sitting in a chair. Something so many take for granted, but following a year of not being able to walk due to shortness of breath and being on oxygen 24/7, getting out of the hospital bed on my own and sitting in a chair, was a big deal! Hard, but a big deal and I did it!

First Time Sitting in a Chair!

Next comes your first walk after surgery. Of course, I was very weak and needed assistance, but every day, the nurses would come, get me out of bed and we would go for a walk and each day we would try to walk a little further than the day before. It's at this point, one thinks, I'm never going to be able to walk like I did before I got sick, but I kept fighting and following instructions and, while it was definitely baby steps, I was making progress.

First Walk!

After I was discharged, my rehab began at home, slowly guided by a great Physical Therapist. At first I had to lay on the bed to do the exercises he wanted me to do. Working my legs to get the muscles to re-awaken after going to sleep for so long. Then after several weeks, we got up and standing to do the exercises. I was clearly making progress, but it was not easy and I always needed a nap when we were done with our hour of exercise.

After about 8 weeks of at home physical therapy, I graduated to Out-Patient Pulmonary Rehab. I was required to go twice a week for 12 weeks with each session lasting an hour. The P.T.'s pushed me to work hard and do more each week. But I was the one that asked when I could start walking on the Treadmill. I was doing well on the machines they had me using, but I felt if I was to be able to really get back to walking, I needed to get on that treadmill. The therapists were pleased and helped me get started. I would use two machines on the days I went there and one was always the treadmill. The P.T.'s would have me increase the incline, speed and time I spent on it. I worked extremely hard and it was not easy. But I wanted this; to be able to return to walking, moving around on my own, was something I dreamed of when I was sick. So I worked as hard as I needed.

Walking on the Treadmill at Out Patient Rehab!

At the end of the 12 weeks of Out Patient Rehab, I was required to do a 6 minute walk. I had to do one at the beginning; they measure how far you can walk in 6 minutes. When I began my Out Patient Rehab after my Transplant, for my 6 Minute Walk, I was only able to walk 684 ft. That was a big improvement over what I could do before my Transplant. Following 12 weeks of Rehab, for my Graduation 6 Minute Walk, I was able to walk 1,337 ft.! A major improvement! I was discharged and told to keep working on my Rehab on my own, especially if I wanted to completely regain my strength and endurance.

I have been diligent in my working out since being discharged from Out Patient Rehab. I either walk outside on days where the weather is agreeable, or I use our community Fitness Center, using the Treadmill or Stationary Bike and doing hand weights every few days. I decided I wanted a goal to work toward and that's when I saw that the Respiratory Health Association was sponsoring their Annual Hike for Lung Health in Lincoln Park on September 20th. So back in July, I signed up to be a walker and my goal was to participate in their 3 Mile Walk. In addition I set up a Fundraising page and set about trying to raise as much money for the Respiratory Health Association, whose work to promote awareness and support programs to promote lung health is so important. So far I have raised over $2,600 and am currently the #2 Individual Fundraiser having been bumped from the #1 position just recently. 

I have been working hard to get ready for the Hike for Lung Health! Walking both outside and in our Fitness Center. Continuing to push myself and how far I was going and how fast I was walking. 

My First 2 Mile Walk Outside!

Doing Weights!

Finished My First 3 Mile Walk!

So today I am heading to the Treadmill to do my last training workout before the Hike for Lung Health on Sunday. I will rest my legs tomorrow and then head to Lincoln Park with my younger brother, who has agreed to be my "walking buddy", and some family to cheer me on as I cross the finish line! I am excited to participate in this important event to help raise awareness for Lung Health and the important work of the Respiratory Health Association. I am very excited that the Respiratory Health Association took an interest in my story and interviewed me and posted my story on their website Patient Stories page. Here's a link where you can read it.

http://www.lungchicago.org/news-human-interest/

Ready for the Hike for Lung Health!

It's been a long, challenging journey from Lung Transplant Surgery, through Rehab and Recovery. I am not 100% back to "normal". I don't know if I ever will be, but I continue to work hard and fight to get my strength back. I have made huge strides and am proud of what I have accomplished. So, this Sunday, September 20th at 10AM (Central Time) I will set off on the 3 Mile course of the Hike for Lung Health. Please cheer me on from wherever you are! I'll take all the encouragement I can get. My goal is to finish the walk in less than 60 minutes. If I do that, I will truly have achieved something at 10 1/2 months Post Transplant that I would not have thought possible a year ago! Here's to achieving that goal! I will post about how things went after the Walk! 

Wish me luck!

My YouTube Video: 

Lung Transplant: From Surgery to Rehab & Recovery