Fundraiser Update #2

Cystic Fibrosis is a genetic disease, so you are born with it, but I wasn't diagnosed until I was 17. During my senior year of high school was when I learned about this huge burden I would have to carry. It was not easy to accept that and I struggled with it because I was a lot less zen than I am now. A few years later, in the early 2000s, was when lung transplant was first mentioned to me, so it has been on my mind for over a decade. Back around 2013, I did the full evaluation for lung transplant and I wasn’t listed because I wasn’t sick enough. I didn’t use oxygen back then and I was more active, so transplant didn’t make sense for me at that time. It’s hard to know when the right time is because you don’t want to get rid of lungs that can still function somewhat adequately because it’s not like you get a brand new pair.

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.

Watertown Tab Article

Transplant Update #1 (4-11-18)

*Originally posted April 11, 2018 on fundraising website*

The support from everyone has been incredible. I felt a lot of stress and pressure when I first announced the fundraising, but people have been so kind and generous that it has made this part of the process easier.

This week, I’ve had a cardiac catheterization, had my sinuses checked out at the ENT, and went to the required visit to the psychiatrist. A doctor said to me after the cardiac cath, “you have gorgeous coronary vessels.” I hope my actual heart is just as robust because lung disease can take a toll on the heart. The ENT said I may need sinus surgery prior to the transplant. When you have cystic fibrosis, the lungs aren’t the only place filling with mucus, the sinuses are as well, and that can drip down into your lungs. Having the surgery and disrupting that spreads bacteria in the body, so the ENT said she would have the transplant team decide if I needed surgery before or after, so it’s not a matter of if, but when.

I was disappointed to hear that news because it could mean a delay and it’s more visits to the hospital. But, having it done before would give the new lungs the best chance, so I’ll do whatever it takes. The psychiatrist visit was pleasant. I told her to deal with the stress of the process that I do a lot of venting and make sure I get my feelings and thoughts out because it makes me feel better, and she said “you know how it works.” Can’t keep things bottled up or you’ll never release your stress. At the end she said “you’re one of the guys that makes it through this.”

I have a colonoscopy scheduled for Patriots Day (Marathon Monday), so I’ll be doing my own marathon back and forth to the bathroom. I hope my colon will be as gorgeous as my arteries.

Everyone has been asking - when is your surgery? I don’t know. It seems like every time I go to MGH it leads to more appointments. Basically, you want to take care of any problems before transplant to give it the best chance.
When I am listed eventually, I could be called at any time, and I would have to be at Mass General within 3 hours for the operation. The average wait time on the list for lungs at MGH in 2018 was 29 days, last I heard. So, that’s the reason you have to prepare in advance with fundraising and everything else because you’re on-call once you’re on the list.

Thank you all for helping me and thinking of me.

Lung Transplant and Fundraising

*Originally posted March 2018 on fundraising page*

At the end of 2017 I decided it was time to pursue lung transplant because my cystic fibrosis had progressed to the point where my quality of life needs improvement. I have been fortunate that the lung transplant team at Mass General (MGH) has been following me closely for about five years as I have inched closer and closer to lung transplant. My life has changed drastically when I think about it as whole, but it was a slow progression to this point, so it was hard to know when it became the right time. When I was growing up I loved playing every type sport, whether it was basketball at the Phillips school or the traveling team practice at the middle school, soccer at Victory field, or wiffle ball at Moxley or down the Cape. Now, I like having a cart at Market Basket to hold onto in case I get out of breath walking around buying groceries, or I wait in the car while my wife does the shopping. The decline of my health was gradual and that is what made it hard to fully grasp.

I am about to start on a journey with unknown consequences and costs, and while I know you can’t prepare for everything, I am trying to prepare myself and my family as best as possible. This page is setup to fundraise for costs associated with lung transplant. My wife, my mother and I attended the lung transplant education class at MGH, and they made it clear that fundraising was essential to the process. Costs add up quickly because the post-transplant recovery is intensive, and I need to go to MGH at least twice weekly so there is gas, parking, and co-pays for each visit and the inpatient stay as well as copays for numerous medications. Recovery can take anywhere from 3-6 months which will require me to be out of work, and unfortunately I am out of sick days since I’ve had to be in the hospital so much over the last few years. I believe that other teachers should be able to donate up to sixty days to me, which would get me to almost three school months. After that, I’m responsible for 100% of my health insurance monthly premium, which is about $2400/month, and I won’t be receiving income if I have no sick days to use. So without my income, and part of Amanda’s - who will have to take time off of work because there's supposed to be someone taking care of me 24/7 for the first month or two - paying the mortgage, bills, etc. would become extremely difficult.

I knew the day would come when I had to get a lung transplant and ask for help, but it didn’t make it any easier. As time passed, I dreaded it less and less. It’s here now, so if you can donate, your contribution will help change my life, and my family and I will be forever thankful. I have a good feeling about this process and the future, I think it’s starting to be my time again.

*My wife, Amanda (AMANDALDUPONT@GMAIL.COM) and my mother, Mary Ellen (IRISHMOMMA4@YAHOO.COM) will be handling things when I am unable, whether it be surgery, post-op coma, recovery, etc., so contact them for questions or concerns. There are fundraising events scheduled by various family members, but I may not be able to attend, so this page is the main source of receiving assistance.

**There is no way to predict what the costs will be ultimately, so the goal amount will be adjusted periodically.

***Unfortunately, donations are NOT tax deductible because I’m not legally recognized as a charity. Sorry. We consulted IRS employees, lawyers, and financial advisors in advance to plan for this and going a route where donations would be tax deductible was not feasible for us. The money will be placed in a trust and used for medical related expenses.