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!