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