Paul C. and his family were making the most of life, enjoying a family vacation in Hawaii. Paul came down with a cold on that trip, and upon returning home to Morgan Hill, Calif., felt run down and had trouble catching his breath. His wife Stephanie suggested a chest X-ray. Instead of the pneumonia he was expecting, Paul learned that he had a condition called idiopathic pulmonary fibrosis.
In the months that followed the diagnosis, Paul and his family scoured the Internet for information and options. His pulmonologist sent him to a specialist who did not consider Paul a candidate for a lung transplant. Paul’s condition was worsening to the point where he required an oxygen machine to breath. Paul and his family sent his scans and test results to various transplant centers.
UCSF contacted Paul for an interview, and Dr. Charles Hood, cardiothoracic surgeon, concluded that despite an esophageal issue, Paul was a candidate for a lung transplant. He underwent a successful transplant and is now breathing freely and saying yes to things in life once again.
How did you feel when you knew something was wrong?
Well, first of all I was reluctant to believe that it was as bad as it was. I just figured it was something they could fix. Doctors can fix everything. When we found out it was more serious, we did research on the Internet, and then we got nervous.
In your mind there were no options?
All of the research said, “There is no cure, one to five years,” and nobody mentioned any other options. I had never known anything about lung transplants. There was no hope.
Tell us about the disease in your terms.
Well, I was diagnosed with idiopathic pulmonary fibrosis, a disease that basically hardens the fibers of your lungs and prevents the oxygenation of the blood. This disease progresses differently for everybody, mine was really fast.
Once my oxygen saturation was low, they put me on oxygen and, I had a 50-foot leash. They did have portable tanks, which lasted one to two hours if I was sitting. If I was walking I would use more oxygen and so would have less time. Just to go to the store I had to use the little electric shopping carts. Here was a guy, 46 years old, with little kids, stuck in this thing, and I hated that.
The pulmonologist referred me to a specialist, who started monitoring me and checking oxygen levels. I also did clinic visits, had CT scans and had pulmonary function tests. They put the results on a CD and my brother and I took it to the hospital for my specialist to review. After a quick look, he basically said I was not leaving; it was bad enough that I needed to get transplanted right away. I was there for seven days and did multiple tests every day. The final one was a test of my esophagus and my motility to push food down.
At the end of all of that, the specialist just said, “I’m sorry you are not a candidate for transplant.” He didn’t say there were options or that there were other places that do transplants. He just said I was not eligible. And so I asked him a logical question, “How long do I have to live?” And he just said, “We don’t like to answer that.”
How did you feel when you found out you had an option?
When we found out there was an option to get a transplant, I went through a lot of different feelings. You know, it is weird. Somebody else’s parts are going to be in me. I don’t know how long they will last. I don’t know anything about the process. It wasn’t like, “Oh I’ll just do that, and it will be all over.” We had to think about it.
We took all of the test data and started sending it out to transplant centers. We sent it to UCSF and two other places farther away. Thank God UCSF called and said that they would like to interview me. I had an interview with Dr. Hood and he said they would do the transplant. I told him about my esophageal issue and he said it was not a problem and that they would tackle that afterwards. He was just so encouraging. I thought, “Wow, okay. We can do this!”
What went through your mind when you got the call that lungs were available?
There were a lot of mixed emotions. I had a pretty good attitude going in and I was set if something really went wrong, I did everything that I could. I think when we actually got the call I was a little nervous. I wasn’t 100 percent sure, but it was good, we were excited. We had been waiting for months and were thinking, “Come on, come on, let’s do it,” but at the same time, this is a big surgery. It’s been a journey the whole time, and this is something new starting that is bigger than anything I had ever gone through so far. So it was huge, it was just huge. I had lots of hope and a little bit of fear. I felt alive, I felt hope, and I felt close to everybody.
What was your prognosis when you left?
Well, when I left, I just figured everything was going to be okay. It was 100 percent, almost as good as new. I was told, “Go recover, do what you are supposed to do. Do your walking, do your breathing exercises, do all of your breathing treatments, take your medicine and go live your life,” and that is what I did.
What is the feeling of your new lungs?
My chest felt tight and that was mainly because the lungs were good and they were full; my own lungs had been shriveled up. Before the transplant when I was sick, I would breath very quickly. After the transplant the lungs were fine, but I was still breathing the same way. The doctor told me, “Paul your lungs are working fine, they are working great, look at your oxygen level,” and so it’s sort of like I had to learn how to tie my shoes again. I literally had to learn how to breathe, and I did.
Also, laughing was huge. You know, when you are sick everybody wants to cheer you up, and it’s great, but I had times when I laughed and it was horrible, because when you laugh, you exhale more than you inhale. And so after the transplant, to laugh feels great.
How do you feel now?
Awesome. I feel pretty darn normal. And I don’t take it for granted. I get up every day and thank God I get to do what I want to do. Six weeks after the transplant I was back to work full time. Before, I had worked 10 to 12 hours a day, so two things happened: one, I couldn’t do that after the transplant, and two, I was missing my family. So I switched things around. There are not a lot of “somedays” anymore. I don’t put a lot of stuff off.
Is there anything you want to add?
It’s been an incredible journey and it still goes on. It doesn’t stop here. I am super glad and thankful every day. I’m glad to be here and I take advantage of everything I can do. You know, when life happens and your family argues or whatever, I get sucked into it like everybody else, I’m normal, but I turn around a lot quicker I think. I’ll stop myself in the middle of something like that and just remember it. I’m lucky to be here. I am very thankful.
In the months that followed the diagnosis, Paul and his family scoured the Internet for information and options. His pulmonologist sent him to a specialist who did not consider Paul a candidate for a lung transplant. Paul’s condition was worsening to the point where he required an oxygen machine to breath. Paul and his family sent his scans and test results to various transplant centers.
UCSF contacted Paul for an interview, and Dr. Charles Hood, cardiothoracic surgeon, concluded that despite an esophageal issue, Paul was a candidate for a lung transplant. He underwent a successful transplant and is now breathing freely and saying yes to things in life once again.
How did you feel when you knew something was wrong?
Well, first of all I was reluctant to believe that it was as bad as it was. I just figured it was something they could fix. Doctors can fix everything. When we found out it was more serious, we did research on the Internet, and then we got nervous.
In your mind there were no options?
All of the research said, “There is no cure, one to five years,” and nobody mentioned any other options. I had never known anything about lung transplants. There was no hope.
Tell us about the disease in your terms.
Well, I was diagnosed with idiopathic pulmonary fibrosis, a disease that basically hardens the fibers of your lungs and prevents the oxygenation of the blood. This disease progresses differently for everybody, mine was really fast.
Once my oxygen saturation was low, they put me on oxygen and, I had a 50-foot leash. They did have portable tanks, which lasted one to two hours if I was sitting. If I was walking I would use more oxygen and so would have less time. Just to go to the store I had to use the little electric shopping carts. Here was a guy, 46 years old, with little kids, stuck in this thing, and I hated that.
The pulmonologist referred me to a specialist, who started monitoring me and checking oxygen levels. I also did clinic visits, had CT scans and had pulmonary function tests. They put the results on a CD and my brother and I took it to the hospital for my specialist to review. After a quick look, he basically said I was not leaving; it was bad enough that I needed to get transplanted right away. I was there for seven days and did multiple tests every day. The final one was a test of my esophagus and my motility to push food down.
At the end of all of that, the specialist just said, “I’m sorry you are not a candidate for transplant.” He didn’t say there were options or that there were other places that do transplants. He just said I was not eligible. And so I asked him a logical question, “How long do I have to live?” And he just said, “We don’t like to answer that.”
How did you feel when you found out you had an option?
When we found out there was an option to get a transplant, I went through a lot of different feelings. You know, it is weird. Somebody else’s parts are going to be in me. I don’t know how long they will last. I don’t know anything about the process. It wasn’t like, “Oh I’ll just do that, and it will be all over.” We had to think about it.
We took all of the test data and started sending it out to transplant centers. We sent it to UCSF and two other places farther away. Thank God UCSF called and said that they would like to interview me. I had an interview with Dr. Hood and he said they would do the transplant. I told him about my esophageal issue and he said it was not a problem and that they would tackle that afterwards. He was just so encouraging. I thought, “Wow, okay. We can do this!”
What went through your mind when you got the call that lungs were available?
There were a lot of mixed emotions. I had a pretty good attitude going in and I was set if something really went wrong, I did everything that I could. I think when we actually got the call I was a little nervous. I wasn’t 100 percent sure, but it was good, we were excited. We had been waiting for months and were thinking, “Come on, come on, let’s do it,” but at the same time, this is a big surgery. It’s been a journey the whole time, and this is something new starting that is bigger than anything I had ever gone through so far. So it was huge, it was just huge. I had lots of hope and a little bit of fear. I felt alive, I felt hope, and I felt close to everybody.
What was your prognosis when you left?
Well, when I left, I just figured everything was going to be okay. It was 100 percent, almost as good as new. I was told, “Go recover, do what you are supposed to do. Do your walking, do your breathing exercises, do all of your breathing treatments, take your medicine and go live your life,” and that is what I did.
What is the feeling of your new lungs?
My chest felt tight and that was mainly because the lungs were good and they were full; my own lungs had been shriveled up. Before the transplant when I was sick, I would breath very quickly. After the transplant the lungs were fine, but I was still breathing the same way. The doctor told me, “Paul your lungs are working fine, they are working great, look at your oxygen level,” and so it’s sort of like I had to learn how to tie my shoes again. I literally had to learn how to breathe, and I did.
Also, laughing was huge. You know, when you are sick everybody wants to cheer you up, and it’s great, but I had times when I laughed and it was horrible, because when you laugh, you exhale more than you inhale. And so after the transplant, to laugh feels great.
How do you feel now?
Awesome. I feel pretty darn normal. And I don’t take it for granted. I get up every day and thank God I get to do what I want to do. Six weeks after the transplant I was back to work full time. Before, I had worked 10 to 12 hours a day, so two things happened: one, I couldn’t do that after the transplant, and two, I was missing my family. So I switched things around. There are not a lot of “somedays” anymore. I don’t put a lot of stuff off.
Is there anything you want to add?
It’s been an incredible journey and it still goes on. It doesn’t stop here. I am super glad and thankful every day. I’m glad to be here and I take advantage of everything I can do. You know, when life happens and your family argues or whatever, I get sucked into it like everybody else, I’m normal, but I turn around a lot quicker I think. I’ll stop myself in the middle of something like that and just remember it. I’m lucky to be here. I am very thankful.