This past Monday I was on the HPS Conference Planning Committee video conference and my phone rang. It was Inova Fairfax Hospital. Every time I see that number my heart falls into my feet. It isn’t that I don’t want a transplant. It isn’t that I wouldn’t be thrilled to get the call. But, when that call comes, I know we will be embarking on a whole new medical saga and the road can be rocky. Surgery isn’t the only scary thing. Getting a transplant isn’t a cure. It’s trading one lung disease for another in hopes that, at least for a while, you get to be healthy enough to have a somewhat normal life. But, we are not replacing auto parts here. It isn’t a sure thing. It might not work. So, getting that call is exciting, but super scary too.
When you first get listed, you may know it is unlikely to get a call, but still, you are on constant alert for the ring of the phone. Nine months in, life goes on. You do your day to day things and try not to think about it too much. At any moment this call could come that will turn your life upside down, but you sort of adjust into this weird normal until it does.
So, when I saw who it was on the caller ID, I immediately picked up the phone. It was my transplant coordinator and one of the doctors. My stomach did a flip flop. But, it wasn’t the call. It was just as much of a stomach turner though.
They were calling to tell me that the transplant committee had met and discussed my case. They think it is time to list for a single or a double lung transplant, and not just a double. They think my disease progression is speeding up, and by doing this, I might get more chances. There are pros and cons, and whether for me a single or a double would be better, is a debate. A single might not last as long as a double. But, the surgery isn’t as hard on you, and if you manage not to get cancer or develop some other health problem from the anti-rejection drugs, it gives you some options if you should have to go for a second try at a transplant. Can you imagine that? We might have to go through all of this again! No wonder I don’t have any finger nails left!
The call caught me totally off guard. At every transplant appointment we’ve had this discussion about whether it is time to list for a single or a double, and so far, we’ve held to sticking it out for a double. While I’ve had progression, it’s been a kind of creeping progression. The call was jarring both because I had to consider listing for a single, and because it is a sign that I’m not doing as well as I thought.
That might seem crazy to someone else, but it’s my way. The day I was admitted to the hospital with severe bowel disease, a hemoglobin of 6 and ended up having an emergency ileostomy days later, I’d had no idea how ill I really was. Sure, I was sick. No doubt about it. I was chronically anemic from internal bleeding. I was living on Ensure, jello, ramen and baby food because I couldn’t eat. I had lost tons and tons of weight. My stomach cramped a lot. I went to the bathroom 15 to 20 times a day and it was very painful every time. But, I felt I was managing a chronic condition for which there was nothing else to do. I just had to get through it. So, I did. That very day I had taken a midterm exam that I blew out of the water, babysat for one of my professors and tutored football players in English. The idea that the doctor’s office wouldn’t even let me walk across the street to be admitted to the hospital seemed utterly crazy to me that day.
Perhaps it is the same way now. I’ve got things to do. I can’t focus on how bad things are. I have to focus on how to get the job done. Learning that my docs had met about me, and were concerned enough about a changing picture to want to change the plan was just as jarring as the whole one vs. two debate.
It took me 24 hours to process things. I talked to my friends in the HPS community, family etc. I looked through and reread journal articles. Ultimately the decision wasn’t as much about science as it was about faith. What decision would I regret more? What decision would give me the best chance of accomplishing some of the things that make this fight worth doing? How much control over this do I really have anyway? So, I decided to leave it up to God. If the plan is to get two lungs, then I will still get two lungs. But, if that is not the plan, then this makes the way for other plans.
It’s been a tough week to be honest. My anxiety levels have been super high, even after making this decision.
When you first get listed, you may know it is unlikely to get a call, but still, you are on constant alert for the ring of the phone. Nine months in, life goes on. You do your day to day things and try not to think about it too much. At any moment this call could come that will turn your life upside down, but you sort of adjust into this weird normal until it does.
So, when I saw who it was on the caller ID, I immediately picked up the phone. It was my transplant coordinator and one of the doctors. My stomach did a flip flop. But, it wasn’t the call. It was just as much of a stomach turner though.
They were calling to tell me that the transplant committee had met and discussed my case. They think it is time to list for a single or a double lung transplant, and not just a double. They think my disease progression is speeding up, and by doing this, I might get more chances. There are pros and cons, and whether for me a single or a double would be better, is a debate. A single might not last as long as a double. But, the surgery isn’t as hard on you, and if you manage not to get cancer or develop some other health problem from the anti-rejection drugs, it gives you some options if you should have to go for a second try at a transplant. Can you imagine that? We might have to go through all of this again! No wonder I don’t have any finger nails left!
The call caught me totally off guard. At every transplant appointment we’ve had this discussion about whether it is time to list for a single or a double, and so far, we’ve held to sticking it out for a double. While I’ve had progression, it’s been a kind of creeping progression. The call was jarring both because I had to consider listing for a single, and because it is a sign that I’m not doing as well as I thought.
That might seem crazy to someone else, but it’s my way. The day I was admitted to the hospital with severe bowel disease, a hemoglobin of 6 and ended up having an emergency ileostomy days later, I’d had no idea how ill I really was. Sure, I was sick. No doubt about it. I was chronically anemic from internal bleeding. I was living on Ensure, jello, ramen and baby food because I couldn’t eat. I had lost tons and tons of weight. My stomach cramped a lot. I went to the bathroom 15 to 20 times a day and it was very painful every time. But, I felt I was managing a chronic condition for which there was nothing else to do. I just had to get through it. So, I did. That very day I had taken a midterm exam that I blew out of the water, babysat for one of my professors and tutored football players in English. The idea that the doctor’s office wouldn’t even let me walk across the street to be admitted to the hospital seemed utterly crazy to me that day.
Perhaps it is the same way now. I’ve got things to do. I can’t focus on how bad things are. I have to focus on how to get the job done. Learning that my docs had met about me, and were concerned enough about a changing picture to want to change the plan was just as jarring as the whole one vs. two debate.
It took me 24 hours to process things. I talked to my friends in the HPS community, family etc. I looked through and reread journal articles. Ultimately the decision wasn’t as much about science as it was about faith. What decision would I regret more? What decision would give me the best chance of accomplishing some of the things that make this fight worth doing? How much control over this do I really have anyway? So, I decided to leave it up to God. If the plan is to get two lungs, then I will still get two lungs. But, if that is not the plan, then this makes the way for other plans.
It’s been a tough week to be honest. My anxiety levels have been super high, even after making this decision.
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