In December 2017, I began the full spectrum of evaluation diagnostics again and this time I felt that I was ready both physically and mentally. One fear I had was that I had become too sick and that I wouldn’t be able to get a transplant and extend my life. When you complete the evaluation your case goes before the lung transplant committee and you get a score. Scoring is between 0-100 and 30-80 is the transplant zone. If you get a score of below 30 you are not considered sick enough to be listed and if you get a score above 80 then you are too sick to recover from the surgery. I wasn’t sure where I would end up in the scoring.
Throughout the evaluation process a lot of issues have come up. I was told I may need sinus surgery prior to any transplant, and have since been told I’m not healthy enough to do sinus surgery now. The cardiologist saw some blips with my heart. When you have lung disease your heart has to work harder. During the colonoscopy they removed polyps that could be pre-cancerous, so I need another colonoscopy in a couple of years to monitor that. There was a ton of bloodwork and labs that had results high, low, and in the good range. I couldn’t help but worry a little that any of these things might prevent me from getting on the list. The lung transplant list was starting to feel like the most exclusive club imaginable - you can’t get in if you’re not on the list.
Last week, they put my case before the lung transplant committee. A few days ago, I met the surgeon as the final step to getting on the list. I had just finished cooking hot dogs on the grill Wednesday evening when the phone rang. They were calling to tell me that I was now on the list. After all this time I am now on-call for lung transplant. At last, the wait is over. Now, more waiting. It is a huge relief though. It had been such a long time coming that I couldn’t get ahead of myself and assume they were going to list me because if they had said no for some reason then my life would become extremely difficult, and short. I was being mindfully cautious in case I had to deal with enormous disappointment; it would have softened the blow of bad news.
My current score is 37. It essentially means that other people with higher score will be prioritized depending on the match. Lungs are matched by size and blood type. I have type O, which is most common, but the commonality is canceled out - more lungs might become available, but more people are on the list with type O. It is possible to be taken off the list for a few reasons - I get much sicker, I get better, or I don’t want a transplant anymore. I definitely want one - I think I could do really well and live for quite a bit longer. It’s unlikely I’ll get better, but my score is low enough where it’s within the realm of possibility that a breathing test or some another evaluation data changes and lowers my score and I’m taken off. Unlikely, but possible. And the other way to be removed from the list is to get sicker. That has the best chance of happening, so I, and the people around me, need to be extremely vigilant about not getting sick and passing germs. I am potentially one flu away from catastrophe, so hand sanitizing, avoiding sick people, and wearing a mask when necessary are critical for me. I got swine flu two years ago and had a fever of 108 and was in the hospital for a week. That could have ended far worse if I didn’t have Wolverine-like healing powers.
Fundraising is going really well and my family and I feel very touched and incredibly grateful for the support of so many. With new lungs I will require tons of medications for the rest of my life, plus medical equipment and supplies. I’m sure there will be bumps in the road that come with expenses too. Right after transplant, I’ll be at Mass General two days a week for a while and my wife and mother will be missing work to make sure there’s 24/7 care for me. So, not having to worry about running out of money while we’re in the process of lung transplant is a huge burden lifted, and increases the chances for best outcome. The contributions people are making really are saving my life.
So many people have offered to help and said that if there is anything I need to just ask. I may have more help than I’ll need at this point, so please consider helping others by becoming an organ donor. I will be receiving someone’s lungs to extend my life because they chose to be an organ donor. I was at a support group meeting during April school vacation and a guy that was there told us he had met his donor’s family and the other five people her organs saved. Since organ donation can have such a profound effect on people’s lives, I ask you to consider it. Life is full of possibilities and I want to live as much as possible. Not everyone can give life, so our universal purpose is to help life continue, and any small thing we do to that end is significant.
There are fundraising events coming up that I’m hoping to attend. I want to thank all the people involved in those events for your efforts. My mother has been attending some appointments and doing many other things, and with her being in the medical fields it has made decisions and fully understanding things easier and so helpful. My mother has a good handle on life matters and is great at giving advice and being empathizing. My wife, Amanda, has been amazing through all of this. The three years we have been together have been the most difficult physically and my health has been the worst it’s ever been. I warned her upfront where my health was heading. None of that scared her away and she is so caring and strong that I am forever grateful and so happy that she is by my side everyday. It’s good that she’s ten years younger than me because you need an abundant supply of energy to deal with me everyday.
Throughout the evaluation process a lot of issues have come up. I was told I may need sinus surgery prior to any transplant, and have since been told I’m not healthy enough to do sinus surgery now. The cardiologist saw some blips with my heart. When you have lung disease your heart has to work harder. During the colonoscopy they removed polyps that could be pre-cancerous, so I need another colonoscopy in a couple of years to monitor that. There was a ton of bloodwork and labs that had results high, low, and in the good range. I couldn’t help but worry a little that any of these things might prevent me from getting on the list. The lung transplant list was starting to feel like the most exclusive club imaginable - you can’t get in if you’re not on the list.
Last week, they put my case before the lung transplant committee. A few days ago, I met the surgeon as the final step to getting on the list. I had just finished cooking hot dogs on the grill Wednesday evening when the phone rang. They were calling to tell me that I was now on the list. After all this time I am now on-call for lung transplant. At last, the wait is over. Now, more waiting. It is a huge relief though. It had been such a long time coming that I couldn’t get ahead of myself and assume they were going to list me because if they had said no for some reason then my life would become extremely difficult, and short. I was being mindfully cautious in case I had to deal with enormous disappointment; it would have softened the blow of bad news.
My current score is 37. It essentially means that other people with higher score will be prioritized depending on the match. Lungs are matched by size and blood type. I have type O, which is most common, but the commonality is canceled out - more lungs might become available, but more people are on the list with type O. It is possible to be taken off the list for a few reasons - I get much sicker, I get better, or I don’t want a transplant anymore. I definitely want one - I think I could do really well and live for quite a bit longer. It’s unlikely I’ll get better, but my score is low enough where it’s within the realm of possibility that a breathing test or some another evaluation data changes and lowers my score and I’m taken off. Unlikely, but possible. And the other way to be removed from the list is to get sicker. That has the best chance of happening, so I, and the people around me, need to be extremely vigilant about not getting sick and passing germs. I am potentially one flu away from catastrophe, so hand sanitizing, avoiding sick people, and wearing a mask when necessary are critical for me. I got swine flu two years ago and had a fever of 108 and was in the hospital for a week. That could have ended far worse if I didn’t have Wolverine-like healing powers.
Fundraising is going really well and my family and I feel very touched and incredibly grateful for the support of so many. With new lungs I will require tons of medications for the rest of my life, plus medical equipment and supplies. I’m sure there will be bumps in the road that come with expenses too. Right after transplant, I’ll be at Mass General two days a week for a while and my wife and mother will be missing work to make sure there’s 24/7 care for me. So, not having to worry about running out of money while we’re in the process of lung transplant is a huge burden lifted, and increases the chances for best outcome. The contributions people are making really are saving my life.
So many people have offered to help and said that if there is anything I need to just ask. I may have more help than I’ll need at this point, so please consider helping others by becoming an organ donor. I will be receiving someone’s lungs to extend my life because they chose to be an organ donor. I was at a support group meeting during April school vacation and a guy that was there told us he had met his donor’s family and the other five people her organs saved. Since organ donation can have such a profound effect on people’s lives, I ask you to consider it. Life is full of possibilities and I want to live as much as possible. Not everyone can give life, so our universal purpose is to help life continue, and any small thing we do to that end is significant.
There are fundraising events coming up that I’m hoping to attend. I want to thank all the people involved in those events for your efforts. My mother has been attending some appointments and doing many other things, and with her being in the medical fields it has made decisions and fully understanding things easier and so helpful. My mother has a good handle on life matters and is great at giving advice and being empathizing. My wife, Amanda, has been amazing through all of this. The three years we have been together have been the most difficult physically and my health has been the worst it’s ever been. I warned her upfront where my health was heading. None of that scared her away and she is so caring and strong that I am forever grateful and so happy that she is by my side everyday. It’s good that she’s ten years younger than me because you need an abundant supply of energy to deal with me everyday.
