RECOVERY, INSPIRATION AND THE HIKE FOR LUNG HEALTH!

One year ago, I was suffering from an incurable, terminal lung disease, on the UNOS Waiting List for a Lung Transplant. I was in a wheel chair and on oxygen 24/7, needing a Bipap to sleep at night. I had been admitted to the hospital too many times to count in respiratory distress. Flew to the Mayo Clinic to get a diagnosis. It was July and my 59th birthday was nothing to celebrate. I didn't know if I would even be here to see my 60th Birthday.

But while it took 4 more months, I got THE CALL and received the Gift of Life and my Lung Transplant.

It has been a long journey to where I am today. Recovering well, getting back in shape and working on my physical therapy. As I have progressed, I decided I wanted to do something I thought I might never do again - a 5K Walk. But not just any Walk; one for Lung Health.

So I have committed to participating in the Respiratory Health Association's Hike for Lung Health on September 20th in Lincoln Park (Chicago).

I'd like to ask all my readers to please consider supporting me in this important event. This is so important to me. The fact that I got my Lung Transplant that saved my life and that I can even consider doing a walk like this is a miracle!

The past year has been the most challenging time of my life. I have worked so hard to get through my Lung Transplant, work on my recovery and rehabilitation. To get to the point where walking 3 miles is even a possibility seemed so far away. But here I am working on my rehab and signing up to walk 3 miles to raise awareness and fundraise for research for lung disease.

I hope you will consider supporting me (no matter how small) and this worthy cause by making a donation to my fundraising page! If you are unable, no explanation is necessary, but if you can help in any small way, it will mean the world to me and you will be helping others suffering from lung disease.

https://secure.imisfriendraising.com/registrant/FundraisingPage.aspx?registrationID=324495&langPref=en-CA#&panel1-2

"Don't Give Up" - Josh Groban

REASON TO CELEBRATE!

Today is my 60th Birthday! A year ago I posted about my birthday last year. I was extremely sick with terminal lung disease, but was on the waiting list for a life saving Lung Transplant. As challenging as it was at the time, I was trying to stay positive that my Gift of Life would come in time. It wasn't easy. And it took 4 more long months of waiting before "THE CALL" finally came and I received my Lung Transplant.

Last year, as hard as it was, being listed for a transplant was a blessing and so I chose to celebrate my life that day. I celebrated with my family, though it was not a big deal and we kept it very low key.

Last year, I did not know if I would be here to celebrate my 60th Birthday, but as I wrote, when I blew out the imaginary candles on my cake (oxygen on board back then so no real candles), I would make a wish that my transplant would come in time and I would be here to celebrate this milestone birthday of turning 60.

I asked all of you to also close your eyes and blow out an imaginary candle making a wish for me that I would get my transplant. One of my Interstitial Cystitis "sisters" started an online candlelight vigil for me for my birthday to support and pray that my wish came true. So many posted pictures of candles they had lit or pictures of candles and participated, it meant so much to me. I truly was touched and moved to tears.

In my younger years, as many of us do, I would make jokes about not looking forward to turning 40, 50, and really not 60. But things like needing a Lung Transplant changes one's perspective.

I could not be happier to be turning 60! I am excited. Friends and I are celebrating; my family is having dinner with me on the day (today) and we will truly celebrate this wonderful birthday! 

This year, as I blow out REAL candles on my cake, I will wish for continued good health, that my lung stays healthy, that my medical team can handle any and all challenges that come our way, and thank them for literally saving my life. I will also express my deepest and sincere thanks and love to my family for supporting me through the most challenging time of my life.

I will also thank every single person that has been supportive to me. You are too numerous to list but you know who you are. Our neighbors that brought us meals for months to help my Mom; the same neighbors that drove me to doctor appointments; the friends that helped with driving and errands and visiting me to keep my spirits up. All my online friends that I only get to see via Facebook; you have an impact and it means so much!  I have SO much for which to be grateful, I think I really do need all 60 candles on the cake it will take that long to make all the wishes I want to wish this year!

This year, I truly have Reason to Celebrate!  So, as I did last year, I'll ask anyone reading this to Close Your Eyes, Blow Out a Real or Imaginary Candle, and wish that all my wishes come true!

Getting Ready to go out to Dinner with Friends on Sunday!
(Looking a whole lot different than one year ago!)

My Birthday Cake!

(I Made It This Year Because I Could!)

"HAPPY BIRTHDAY" - Celine Dion

Join me in the Hike for Lung Health Charity Walk!

Join me in the Hike for Lung Health Charity Walk!

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

If anyone had asked me before I got terminal lung disease if I could handle having a Lung Transplant, I would have said "Hell No!". But you never know what you are capable of until you are faced with having to make that decision. It would have been so easy to fall apart (I had my moments) and just give up. But I wasn't ready, so I dug deep and found the strength I needed to face my fears and get that Lung Transplant. This quote spoke to me about that kind of situation. It can apply to so many situations. I hope you find whatever inspiration you need from it.

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” 

– Unknown

"Thankful" - Josh Groban

I MAY NOT LIKE IT, BUT I'M GETTING USED TO IT!

So since my Lung Transplant, things have been going pretty well. My lung is doing well. Any problems I'm having are all side effects from the medications I must take. The biggest issue I'm having is from one of my anti-rejection medications which is causing kidney function issues.

Now, it's not like I wasn't warned about this prior to my transplant. The statistics show that 25% of Lung Transplant patients experience high levels of serum creatinine (the lab test which is an indicator of kidney function) within the first year after transplant. Here's a link to an excellent article that explains what Lung Transplant patients must deal with post transplant.

https://secondwindstl.org/who-we-are/articles-by-dr-hacheem/chronic-kidney-disease-after-lung-transplantation/

My kidney function is not good at this point. My lab tests all show I am dehydrated even though I am drinking 96 oz. of water every day. That's because my kidneys want more. My body wants more than I am capable of drinking in a single day. My Creatinine just keeps climbing higher and higher. I'm told it's nowhere near the stage where I need to be referred to Nephrology yet. But we do need to do something. 

OK, so what is it we need to do now? Whatever it is I'll do it. I can't speak for any other transplant patients, but after having gone through a surgery like that, from which I am still recovering 8 months later, I doubt there is anything they can throw at me that I won't just say "when and where" and go do it! I may not like it, but I have been through so much in the last 2 years, never mind what I went through with my IC in the last 13 years before I even got this lung disease. There isn't much they can throw at me, that I don't just suck it up and do it.

To help my kidney function - hopefully - the Transplant Team suggested I do two IV Saline Infusions this week (Wed. & Fri.). OK, no problem. Heck at this point, an IV is nothing anymore. These infusions took 3 hours each, but I brought my iPad and iPhone and kept myself occupied. Of course, my IC bladder does NOT like this and I had to go to the bathroom in the middle of the infusion. I've been hooked up to IV's so many times that I have my Ph.D. in pushing an IV pole to the bathroom; didn't even need to call the nurse. 

Monday I will go to the lab for yet another blood draw and they will check my Creatinine and see what, if any, impact these infusions have had on my kidney function. Hopefully they will have helped. If so, then my question is: will these infusions become a regular treatment? Because I can't see the two I had lasting more than a few days (the nurse that hooked me up said that's the case with these as well). I suspect if they helped, they may become something I have to do on a semi-regular or regular basis. I'm anxious to find out.

If so, I'm hoping I can do it at home and not have to drive to the hospital for them. A conversation I need to have with someone on the Transplant Team. 

Regardless, if it's called for, I'll do it! When I signed up for a transplant, I said I would do whatever was necessary to take care of this precious gift I'd been given. So, while this may not be fun, I'll do it.   I'm getting used to this stuff. I barely blink. I have my moments; I am human, but things like this have become so routine I'm used to them. 

So whatever it takes, I'm on board. I'd really like to avoid kidney failure, dialysis and a kidney transplant. I've had one transplant; that was enough for me. But if that's what ends up being necessary, then so be it. I think the Transplant team is working hard at doing whatever it takes to postpone kidney failure for as long as they can.

Here's hoping they can postpone it for a very long time!

Wednesday; Infusion #1

Friday; Infusion #2

MILESTONES!

July 3rd was another milestone for me: 8 months ago on that day I received my Gift of Life and got my new lung. Time is passing so quickly and I can't believe it's been 8 months! The milestones are coming at me fast! Monday I will see my Transplant Team for a full check up, blood work, pulmonary function test and exam. I haven't seen anyone in 3 months which is amazing to me. I am having various medication side effects (kidney function problems) that I was warned about before transplant; I need to be monitored for antibodies that are starting to show up and that's a concern for rejection. I will anxiously await the results of all the tests on Monday and hope things are stable. But so far I am doing well and can't wait to tell the Transplant Team about my three - 3 Mile walks! What a difference a year makes. 

Before Transplant

After Transplant

"Go the Distance" - Michael Bolton

FINALLY! TAKING CARE OF MY IC!

It's been a long two years years. Since developing a rare lung disease that took way too long to diagnose, finding out I needed a lung transplant, being put on the transplant waiting list and waiting and waiting for my lung to come, never knowing if it would. Finally, I was blessed to get THE call that there was a lung for me and I had my transplant.

While I am blessed and grateful every single day for the precious gift I was given, it has been a very long and painful journey. Not just the pain and trauma of a major surgery like a lung transplant, although it is definitely NOT for sissies, let me tell you. But due to my lung disease and this recovery period, my IC had to take a back seat. Since my surgery, I have finally been able to see my IC doctor and I got an instillation at that visit. Aaaaahhhhhh! It had been so long I'd forgotten what it felt like for the pain in my bladder to be relieved, even for a little while.

I know in the IC community, our treatments all vary. There is no one treatment that works for all, but for me it has always been an instillation cocktail. It is, for me, my miracle treatment. To not get it for nearly two years has been an added challenge to this whole process. It just made dealing with the transplant pain even harder. 

Being required to go through Rehab and exercise didn't help my bladder either. Walking on the treadmill, sitting on the bike, lifting weights; all of those just made my bladder scream at me even more. 

Before I got this lung disease, I was doing instillations at home, but when I was in a wheel chair and on oxygen, I didn't have the strength to mix it up and give it to myself. I also couldn't get to the doctor to get a treatment, as it took three people, and every tank of oxygen I had to get to the doctor's office, make it through the appointment and then home again. After one attempt and nearly running out of oxygen before we got home, we realized it was not practical to try to get to his office for a treatment. 

Well, as my recovery has progressed and my exercise and Rehab has helped me begin to regain my strength and energy, I have thought about the possibility of of re-starting my instillations at home. I was beginning to feel stronger and that I might be ready to give it a go.

Today was that day. I went to the basement, found the boxes with my instillation supplies, gathered what I needed and carried them up two flights of stairs (I'm counting that as part of today's workout - LOL!). I mixed up my cocktail; it was like riding a bike. It all came back to me in an instant. I mixed up my cocktail; catheterized myself to drain my bladder and pushed the instillation. What wonderful relief! To have that pain go away, even if it's for just a few hours (we'll have to see how it goes), was nothing short of wonderful. 

I am still feeling the positive effects of the instillation and it's been 3 hours! That's very good and if I can remain comfortable for a few more hours, I will be so happy. I'm already happy. I can't wait until I see my IC doctor in a few weeks and give him the good news. He'll be so happy for me. He has felt so helpless as I went through this lung disease and then my transplant; all he wanted to do was anything he could to help my IC and he couldn't. Now he can and he's so happy I got my transplant and am recovering well (let's pray that continues).

Today has been a good day and getting some much needed relief from my IC is part of what makes it a good day. My bladder is calming down and that's less pain than I had before I gave myself that instillation. It's a good day!

Instillation Cocktails from ICA Website:

http://www.ichelp.org/page.aspx?pid=937

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

Look to this day,

For yesterday is but a dream,

And tomorrow is only a vision,

But today, well lived,

Makes every yesterday a dream of happiness,

And every tomorrow a vision of hope.

Look well, therefore, to this day.

Sanskrit Proverb

"Reach" - Gloria Estefan

REFLECTIONS ON MY LIFE!

I am turning 60 in a month. That's an age where people have a tendency to reflect on their lives; often people begin to retire around then; try to slow things down and take it easier - enjoy life more. As we get older we often realize what is really important in life - family, friends, our health.

As a lung transplant patient, I have found myself drawn even more to reflecting on my life and how I ended up where I am. There are no answers.

Especially as I post Throwback Thursday photos of me from a young child throughout my life but all before I got sick. I realize it was a different life; that was then, this is now. There's before I got sick and after I got sick.

Life IS short; often we don't realize it as we go through our lives, work to build a career we like, love if we're lucky. But one day I post a Throwback Thursday photo of me at 28, healthy and enjoying life, when it really hits me I'm turning 60 in a month and I've been sick with one disease or another for 13 years! How on earth did I end up here, like this? Suffering from multiple diseases (Interstitial Cystitis and associated co-morbid conditions; cardiac issues and Epilepsy) has been challenging enough. And then, just to make my life even more challenging, in November 2013 I wake up one day with a bad cough and think I have a cold. Three months, multiple hospitalizations and a trip to the Mayo Clinic later, I am told I have an incurable, rare lung disease called Idiopathic Bronchiolitis Obliterans. WHAT? Now I really want to know how I got here, but the doctors can't tell me. It seems to have happened literally overnight; one day I am fine, then slowly I develop multiple medical conditions requiring I stop working and go on permanent Disability. And as if that wasn't enough, then I get this mysterious lung disease and within 3 months I am told I need a Lung Transplant or I will be out of options.

Luckily for me, I was accepted into Loyola's Transplant Program and finally got my transplant on November 3, 2014. It's now 7+ months post transplant. I am doing well, although there are issues that I must deal with, as do most transplant patients. My anti-rejections meds are causing kidney function problems requiring medication adjustments and weekly blood tests. Also, my body is building antibodies that want to attack my transplanted lung and cause rejection, so that has to be monitored with monthly blood tests. It's a juggling act. They must get the medication levels right so that they prevent rejection but don't damage my kidneys to the point I end up in kidney failure, on dialysis and waiting for a kidney transplant. 

I look at the pictures of myself as a young woman and I just stare at them and can't believe that girl has ended up with all these major health problems. It seems like we are two different people. 

I've said it before; Transplant isn't for sissies. Seven months post transplant and I still suffer from post surgical pain, need wound care and I will be working on my physical rehabilitation for a very long time. Being in a wheelchair on oxygen for a year caused such extreme de-conditioning, it takes a lot of hard work to get back in shape. I am making progress, but it seems so slow. Once, I was the girl who ran so many 10k's I can't count them, 5 Half Marathons and the 1989 Chicago Marathon. I was an avid skier. Loved anything involving the outdoors. Now, climbing a flight of stairs feels as hard as the Marathon did. 

Who is this woman I have become? I don't recognize her. But here I am. I've gotten through things I never thought I could handle and I'm proud of that. I never thought I could handle a surgery like a Lung Transplant, but I did. 

I think all that training I did, helped develop my determination; if I want something bad enough I'll work hard to get it. I have had to work harder than I've ever had to in my entire life over the past two years. 

I am stronger than I ever believed I could be when I was that 28 year old. I think about that too these days. While I never expected to end up being on Disability and a Lung Transplant patient, I have discovered that I am strong enough to handle all those things. When things get tough and I have a moment, I am able to pull it together by reminding myself how hard I have fought to get to where I am today and with the love and support of my family and friends.

As I find myself reflecting on my life, I acknowledge it's been a long and very winding and strange road that has brought me to where I am today. 

Getting so many diseases and needing a Lung Transplant were not on the list of things I wanted to do in my life. But as I reflect on where I am, it's better than the alternative. So, while I've had my share of challenges, I am glad I am here and will keep fighting and doing whatever my doctors tell me to do.

Here's to life and the long and winding road that has brought me here. I am looking forward to celebrating my 60th birthday, the one year anniversary of my transplant in November and lots more family birthdays, anniversaries and special events!  Sometimes reflecting on your life is a good thing. While my life hasn't turned out as I would have expected or even wanted, I am here and for that I am blessed and grateful! 

"Way Over Yonder" - Carole King

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

"I Won't Back Down" - Tom Petty & the Heartbreakers

LEARNING ABOUT LUNG TRANSPLANTATION!

I have written a lot over the past year and a half about my experience with lung transplantation. I thought it would be informative (my goal is to educate as often as possible) to share some videos from Loyola where I was lucky enough to be accepted and had my lung transplant. None of the videos are long but they give you excellent insight into what the process is like for those of us that go through it.

I hope you'll take a few minutes to watch and learn. This is my Team that I trust with my life; they are simply the best. 

http://www.loyolamedicine.org/transplant/newswire/news/loyola-sets-state-record-lung-transplants-2014

"While You Wait for a Lung Transplant"

http://loyolamedicine.org/newswire/features/while-you-wait-lung-transplant

"Evaluation for a Lung Transplant"

http://loyolamedicine.org/newswire/features/evaluation-lung-transplant

"Time for Lung Transplant Surgery"

http://loyolamedicine.org/newswire/features/time-lung-transplant-surgery

"Recovery from Lung Transplant Surgery"

http://loyolamedicine.org/newswire/features/recovery-lung-transplant-surgery

Sitting Up for the First Time with my Brother!

Home Post Transplant!

The Never Ending Blood Tests!

AN IMPORTANT ANNIVERSARY!

Today is a very important anniversary to me and as I look at the calendar I cannot believe it's been a year. I take a moment to stop and be grateful for today is the day, one year ago exactly, that I got the call from Loyola that I had been put on the UNOS Waiting List for a Lung Transplant!

June 10, 2014. It had taken multiple stays in my local hospital, a trip to the Mayo Clinic, being denied as a candidate by the University of Chicago, finally being given an appointment at Loyola Medical Center to talk to the Transplant Doctor about being accepted into their program. Followed by a week long stay in Loyola undergoing more testing than I thought was even possible, more blood taken I surely thought I'd run out. Then the Transplant Team had to meet to review the results of all those tests and decide if they would accept me as a Transplant Candidate in their program. 

It had been since November, 2013 since I had gotten sick. And all this time I kept getting worse and no one could tell me what was wrong. When I was finally diagnosed at Mayo and told I would need a Lung Transplant, I naively believed I would return to Chicago and just get accepted by one of the Transplant Hospitals. But no, it was not that easy. Sometimes it felt like I could get an appointment with the President easier than I could get accepted for a Lung Transplant!

Finally, one of the Transplant Nurse Coordinators called me with the news. After 7 months of struggling with this mysterious illness that came out of nowhere and was threatening to take my life, I was given the great news that I had been accepted into Loyola's Transplant program and was now officially on the UNOS Waiting list for a new lung!

So today is a special day. Getting on that list is so important. If you don't get on the UNOS list, you won't get a transplant. It's that simple. It was great news and I will never forget the tears streaming down my face at the POSSIBILITY that I could get a new lung and my life would continue.

The waiting for that new lung also began that day. Because while I was just given great news, there's no guarantee that I would ever get my lung. We need more organ donors. It's that simple. We all think we're going to live to be old and gray, but you never know and should the worst happen, do you want your legacy to be one of helping others live? I hope so.

So my request on this anniversary of being listed on the UNOS Waiting list for my lung (and I am now 7 months post transplant and doing well), I'd like to ask everyone to consider being an organ donor. Many who think they can't be a donor, actually can. And even if all your organs can't be used, often many can be; corneas, tissue and more. 

Please consider being an organ donor and letting your family know that this is your wish; put it in writing. Here's a link to the UNOS website where you can read about the urgent need for more organ donors. 

http://www.unos.org

Be An Organ Donor

This Anniversary of being put on the UNOS Waiting list is a date I will never forget. It ended up saving my life thanks to the generosity of an anonymous and selfless person who  gave me the ultimate Gift of Life!

Me After my Transplant Enjoying Life and my Family!

"Thank You" - Keith Urban

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

It is now 7 months since my Lung Transplant. While there are and have been bumps along this road, I am alive. A year ago I still had not been put on the UNOS waiting list. That anniversary is in a few days. You've probably noticed that I take note, celebrate in small ways the many milestones that come with being a transplant patient. It seems to be a transplant "thing". But we have so much for which to be thankful, for without our transplant, there would be nothing to celebrate. By the time I got my lung, the doctors were extremely concerned that I would live long enough to get my organ. So these milestones are very important to me. Every single morning that I wake up, I think of the anonymous donor that gave me the ultimate Gift of Life and the lung that saved my life. I will think of the day that I was finally put on the UNOS waiting list. I will celebrate every time I make it one more month; June 3rd was my 7 month anniversary of getting my transplant. As the months tick off, the Transplant team tells me how great that it is. I am working so hard to make it to the one year mark and hope everything continues to go well, or is manageable, so I can celebrate my one year anniversary of what I am calling my "Re-Birthday"!  

So, when looking for an Inspirational Quote for today's post, I came across this and it really seemed appropriate to me. I am grateful every single day to be alive and enjoy spending time with family and friends. That's what is important to me and what makes me smile!

“If you're reading this...

Congratulations, you're alive.

If that's not something to smile about,

then I don't know what is.” 

― Chad Sugg

Me and my Family!

"What A Wonderful World" - Tony Bennet & K. D. Lang

IT'S A ROLLERCOASTER!

Having a Lung Transplant is one of the most complicated and serious surgeries a person can have. They are more complicated and complex than a heart transplant. The outcomes are not as good as other organ transplants. They were the last organ to be taken on for transplant because of the complexity of the surgery. All of this is to explain that along with such a difficult surgery, the recovery is also very challenging, slow and really requires a lot of hard work.  Not that this is a surprise to me; the Transplant Team does a great job of preparing you and telling you what to expect. They did not exaggerate!!

Step on up to the roller coaster. There are so many ups and downs that I'd swear I've boarded the biggest roller coaster out there. The good news is my lung has been doing fantastic so far. Every test and Bronchoscopy and culture we do, to check it, comes out great. I am told my lung function is fantastic and that's hugely important! Wheeee! The roller coaster just went down a steep drop with the good news.

But then there are the side effects from all the medications I must take for the rest of my life. All transplant patients must take immunosuppressants to prevent organ rejection. As the doctors explained, our bodies will NEVER, that's NEVER, accept the transplanted organ. Without the anti-rejection medications, our bodies would attack the organ because it thinks it's an invasive thing there to do us harm not save our lives. So immunosuppressants are going to be part of my life forever. I knew that too; they explained all this. But as that roller coaster heads up the steep climb to the top, problems with side effects from those immunosuppressants start to pop up. For me, it has been liver and kidney issues. We managed to get my liver function stabilized, but my kidneys are not cooperating.

I am told the lab reports show that I am dehydrated. I am shocked because I've been drinking about 64 oz. of water a day! They tell me to drink another bottle! Seriously?! I don't think there are enough hours in the day to drink that much water! Plus with my Interstitial Cystitis disease, my bladder is not enjoying this one little bit.

It's hard not to worry about kidney failure as it's a common problem for transplant patients, many of whom end up on dialysis and then needing a kidney transplant. I'd seriously like to avoid that. I am told by my team that I am nowhere near that yet and they will tell me when I need to worry if it even gets to that. I have blood tests coming up in about a week and we'll see how my kidneys are doing since the last test. I'm hoping they are at least stable and not any worse. They will check them again when I see the Transplant Team in July. So they are monitoring me. But it's hard not to be anxious, but I am working on it. I trust my team and they know what they are doing. So I close my eyes and hold on tight as the roller coaster makes its way up and down and around.

Then there's my physical rehab. I am working so hard on my physical rehabilitation. I was in a wheelchair and on oxygen for over a year, so I was completely deconditioned. By the time I finally got my transplant, I could not stand without assistance or even walk without a walker. Forget about stairs completely. So to get back in shape was going to take a huge commitment on my part and a lot of hard work. It also wasn't going to happen overnight.

I am working so hard at it. It began with in-home physical therapy until I was strong enough to begin going to out patient rehab. Out patient rehab was twice a week for 12 weeks. When you begin rehab you are required to do a 6 Minute Walk Test (I've also done these for the Transplant Team; before my transplant I could barely walk 100 ft.). They test your oxygen saturation during the test and your blood pressure. When I started back to Rehab after my transplant I was able to walk 684 ft. which at the time was a big deal! When I completed my 12 weeks of Rehab, I had to repeat the 6 Minute Walk and on my final 6 minute walk I was able to walk 1,337 ft.!!!! I was so excited by the improvement! So another big downhill on the roller coaster as I can see the progress that I am making. 

Now I am on my own for my rehab and must be dedicated to keeping up with my exercise. If you follow me on Facebook, you will often see posts about my workouts and how I am doing. It is HARD work, let me tell you. There are many days I wish I could skip it and just sit in my chair and be lazy. But I cannot. I promised the Transplant Team that if I got a lung, I would do everything I was supposed to do to take care of this great Gift of Life! So that's what keeps me going. Knowing I must do all I can to take care of this precious gift. 

I am making good progress when I walk or use the treadmill or bike at our Fitness Center. However, the stairs in our house up to my room are still like climbing Mt. Everest to ME. When I reach the top I am totally out of breath and need to sit down. Stairs, really no matter where, still do me in. This is the roller coaster making its way up the steepest climb on the ride. I feel I have made no progress at all when it comes to climbing stairs! It's frustrating. I have an app on my iPhone that tracks things like climbing stairs, how far I walk etc. So I carry it with me all over the house so I know how many times I've climbed the stairs in one day. Often it's as many as 10 times up and down. And yet I still struggle every single time I must climb them. Will it EVER get easier?!?! 

My wound (the part of the incision from my surgery that did not close) is still not completely closed. My Mother still has to scrub it every day and put on a clean bandage. That hurts like the devil. It hurts, really, all the time. The whole incision still hurts, although part of it is just numb. When oh when will this heal and the pain at least begin to dissipate?!?!

These are the ups and downs of the roller coaster ride that is being a Transplant patient. Nothing comes easy and I must remind myself every day that I am here; I am alive thanks to the ultimate Gift of Life given to me by an anonymous stranger. So I keep going, and keep fighting. One must learn to take the not so good with the good. 

So, I got on the roller coaster and I'm hanging on for dear life. I always hated roller coasters; never could ride them as they make me sick. So this feels a lot like that. I don't want to be on it; the ups and downs are not fun. But they ARE part of the deal when you become a Transplant Patient.

Oh, and I can never get off the roller coaster. It's like Groundhog Day; it just keeps repeating itself over and over and I must keep up my efforts to stay on it. This is hard, but it's worth the effort. And that's what I keep reminding myself as I climb those stairs!

MY IC BLADDER VS. MY KIDNEYS!

My Transplant Team keeps telling me how great I am doing. And, most important, my lung function is excellent and I have no rejection issues at this point. All good stuff.

However, the immunosuppressants I must take for the rest of my life are giving my kidney function fits. The most recent kidney function test was the second highest number I have recorded since January. But my Coordinator tells me there is nothing to be done about it and I am nowhere near the stage where we have to worry or send me to see the nephrologist. It's hard not to worry, but they keep reassuring me and so I must trust my team. They saved my life and they know what they are doing. I need to work on trusting them and not worrying when they tell me it's not time to do so yet.

They want me drinking LOTS of water. All the lab results show that I am dehydrated even though I am drinking over 90 oz. of water every day! They said, drink more. Drink more! There aren't enough hours in the day to drink over 100 oz. of water in the day! But I'm pushing fluids as best I can.

And this is where my IC hates my transplant & kidneys. My poor IC bladder does not like me drinking THIS much water. Of course, I always made sure since getting IC to stay well hydrated, but not to flood myself. I feel like this is flooding and my bladder is screaming at me. And with my retention, that means even more catheterizing. The labs showing that I am dehydrated are because my kidneys are not functioning properly so my body is asking for more water. 

This is hard. It's hard to drink as much water as they want me to.  It's hard not to worry about my kidney function, especially since it's one of the most common problems transplant patients must deal with, often needing dialysis and ultimately a kidney transplant. They tell me I'm not there yet. I'm anxious to see the next set of test results. I go in two weeks for another Complete Metabolic Panel which will show what my kidney function is. I am hoping it stays level and doesn't go up. That would be a good thing.

Then my next appointment with my Transplant Team is July 6 and they will check it again then. So they are monitoring me.  My Coordinator keeps telling me, no news is good news. If she has something serious or important that I need to know, she WILL call me. Otherwise, I can assume all is well. This is hard for me; I want info. It helps me and I cope better knowing no matter if it's good or bad. So I must get used to this way that they work. It's hard for me.

But this is a real challenge and they warn you before your transplant that it will be like this. They warn you of potential medical issues from all your medications. So I expected this. But no one wants to hear the words renal failure. So here's to my test results holding steady the next two times we test them.

In the meantime, my IC is making it even more challenging than it would already be. It's interrupting my sleep as I am getting up constantly to pee (even more than before, if that's possible). I was already on Disability for my IC, so it was pretty bad. All this water isn't helping. But I have no choice and I will do my best to follow my instructions and be a compliant patient. I've been given the greatest gift, so I will do what I am told and everything I can to insure a successful outcome.

I already had IC when I came down with this mysterious lung disease. Seriously?! I didn't have enough medical woes (IC, Epilepsy, Cardiac Issues to name a few) that I needed another! And of course it had to be life threatening; if I didn't get a transplant, I would die. Gee, I wasn't having enough fun already, I needed this too!

Well, I never imagined I could get through a major operation as big as a Lung Transplant, the post surgery Rehab and all that goes with being a transplant patient. But I am doing it. So my IC will just have to take a back seat while I try to keep my kidneys functioning. I'll cope; my psychologist is a big help.

Sometimes I feel my body has turned on me and I just want to give up. But once I asked and was granted acceptance to being a transplant recipient, giving up was not an option. So I fight on; every day. I take my meds on schedule, I work on my exercise and my diet. And, yes, I drink all that water! I think I'm going to float away. 

I envision my bladder cursing at my lung and my kidneys. My poor IC bladder is not happy. Well, that's life. I'll have to cope with it.

My Water Bottle!