I’ve never talked about this here before, but I think this might be a good thing to do right now. I’m sitting in a waiting room at the University of Pittsburgh Medical Center (UPMC) while my son Al is undergoing a double lung transplant.
He’s 32 years old and has had Cystic Fibrosis all his life. This was not unexpected, but it’s been something that’s been on the horizon for so long, it never felt like it was something that would actually ever happen. But here we are and it’s real.
Al was understandably nervous. He had been resolute in his decision to get the transplant since he decided to go ahead with it a few months ago. But, of course, when reality was in front of him and he was sitting on the gurney getting poked and prodded, it all sunk in. But he stuck with it and is going through with it.
When Al was born, he had surgery for a blocked ileum, a common complication of CF and probably the first clue that he had it. They sent him to Children’s Hospital in Buffalo from Lockport before he was even four hours old.
After the surgery, the surgeon called Al’s mother and I into his office. He told us that the surgery was successful, but that the prognosis for a child with CF was maybe 10 years. Al is now in his thirties. A number of years ago, I saw an obituary in the paper of the surgeon who had told us that. I clipped it out and gave it to Al. Not to gloat, but to show how wrong they can be.
He’s been a fighter. He stubbornly refuses to quit, or to let CF stop him. He’s inquisitive and not afraid to question the doctors who treat him. If something doesn’t seem right, he’ll tell them and has always been the one in charge of his treatment. The doctors, of course, choose what they want to do, but he’s always held final say. Fortunately, he’s smart enough to understand what they are doing and participate int the decisions.
We were here in Pittsburgh a number of years ago for the initial evaluation for a transplant. It took a week for all the tests. He was put on a transplant list, but after consulting with his doctors in Buffalo, decided that he wasn’t yet bad enough to opt for a transplant. He was kept inactive for many years, just in case he got worse.
Of course, CF doesn’t get better. He worked hard to keep healthy and keep his lungs working and it worked to a point. But he never was quite 100%. He was in school and would get sick in the cold months and need to go into the hospital for a couple weeks to clear his lungs up. Of course, this coincided with exams and he never could get through college because of it. He worked too, but had the same problem. His dream to be an artist was nearly achieved while he worked as a artist and graphic designer making signs for a local supermarket. But when a chance for promotion came, his illness got in the way. A department head needs to be there all the time. They’ve been really good to him at the store, and he still works there, but it’s been hard being so limited.
There’s a fine point where a person is sick enough to need a lung transplant and healthy enough to survive the operation. It’s major, major surgery. But, it’s better now than even a few years ago when he first looked at it. He and his doctors decided it was time and he made the decision that he would go ahead with it.
There’s no guarantees. It’s risky surgery. There can be rejection. You really trade one disease for another. The many other aspects of CF are still there as well. I wouldn’t want to make that decision myself. I’d be a wreck trying to second guess myself. But Al made up his mind and I respect his choice.
Tonight he got the call. He talked with the doctors over the phone and decided it was a go. Once the process starts, there is only a certain number of hours to get it done. Phone calls were made and a pre-arranged flight through a volunteer pilots group called Angel Flight flew us from Buffalo to Pittsburgh. A medical transport met us at the plane and drove us to the hospital. We got here about 1:30 am. By 6:30 he was going into surgery.
So, here I am with some time on my hands waiting for an operation that typically takes about 6 hours. I’ve been up all night and don’t yet have a place to sleep myself, but couldn’t anyway. They want me here anyway. So, I’ll blog. I figure it will be a good way to let friends and family keep up on it. I don’t know if anyone else would be interested, but it’s the most interesting thing happening to me in a while as well. I’ll write more here as time goes on. Maybe when I’ve had some sleep, it’ll be more coherent as well!
Hey Al…
Often times this surgery on us CFers can take a bit longer than 6 hours — these lungs we’ve been struggling with all of these years are often stuck pretty hard and fast into our chest walls…
I’ll keep your son in my thoughts and prayers… I think that CF Dads and Moms totally rock — they provide the foundation and support we need to get through life… Yes, so often we’re fighters as you’ve described your son — but so often you instilled that fight in us, whether you realize it or not…
I hope your son’s journey parallels mine — I made it almost 40 years before transplant — I never really realized how much I was struggling those 40 years… To me or your son, it has been just life — it’s a little worse each year, but it’s all we know… Oh my God, Al — breathing with “real” lungs blows my freaking mind every freaking day… It’s been a little over eight years for me and I still think about it every single day… A few years after transplant, I learned about my donor — a beautiful girl from Iowa named Kari who told her family twice in the month before she died how strongly she felt about organ donation… She’s in my thoughts throughout the day, every single day too…
My surgery was pretty smooth — immediatly after, recovery was a bit scary for a few hours — but ultimately my recovery was quick — and my life afterwards has been amazing… I have some of my story at http://www.ClimbingForKari.org and I blog about organ donation at http://www.ReviveHope.com
I hope your son’s recovery, and his life afterwards, is more amazing than mine, if that is at all possible… I hope that, very soon, he feels how amazing it is to receive a gift like this, and breathe like a “normal” person — it’s funny, what feels “normal” to someone else lets us feel like Superman…
You take care… He’s in my thoughts and prayers…
Love,
Steve
Steve Ferkau
Chicago, IL
Steve,
Thanks so much for your kind words. I don’t know how you found my post so soon after I wrote it, but it sure made me feel better.
I can’t wait till Al is out of the woods and I can show him your comment. I’m glad you’re doing well and hope that continues for a very long time.
Yes, six hours is just a rule of thumb, if everything goes smooth. We all know nothing ever does. I’m still waiting here for word, but when it does, I’ll let you know here.
-Al (the Dad)
I can’t wait until he’s out of the woods either — I’ll keep an eye on your blog… I found you because I have Google “alerts” for news stories and blog posting that include the words “lung transplant”… When I pick up on a story of someone waiting, getting “the call”, or recovering — I try to fire them a few words of support… I had so very much support when I was going through this — I can never pay those people back. But, I can try to do something to pay it forward…
I get to do a lot of public speaking about organ donation for Gift of Hope in Illinois… On January 1st, I get to ride the Donate Life Float in the Rose Parade — and I’m very proud and honored to be invited to do that — but what’s most special to me is the ability to tell the world about the girl who saved my life… And I do so because I know there are people like your son waiting for a life saving gift like the one he got — and every person I influence to believe that organ donation is a good thing, another precious life like your son’s will have the opportunity to be stretched out a little longer…
Hang in there — there can be some bumps in the road, but your Al has just made it over the biggest one — waiting and getting the call… Now, he’s got a chance… I’m rootin’ for him!
Love,
Steve
Al,
This is momentous news. Albie is in my thoughts this morning and I am praying for him and his doctors that this will be a complete success. I am praying for you as well – you must be pulling your hair out with anxiety. We are all anxiously awaiting good news on the surgery’s outcome today.
When you see Albie, please let him know his entire family is pulling for him! I hope that this will mark a wonderful new beginning for him, as your friend Steve describes!
Love,
Cousin Sarah
Hey Al, I just wanted to say that your family is in my thoughts and prayers. Take care of yourself as well during this time.
Bridget