Today marks my 1000th day on the heart transplant waiting list. On September 9, 2014, I knew my case for being listed was being heard. I also knew that I was highly likely to be listed. If you had asked me or my doctors a week before that meeting, we all would have said I’d be listed at level 2 (the lowest priority level). As it turns out, I was unanimously approved to be listed at 1A as my condition was deteriorating rapidly. I was on bed rest at this point and couldn’t even get up to go to the bathroom. Two days later, I had my LVAD implanted which moved me down to level 1B on the transplant list.
As I indicated in my post on Opening Day of the 2017 baseball season, my doctor and I decided to activate the 30 days of 1A time that I had at my disposal because of my having an LVAD. The idea being that they would like me to be as healthy as possible at the time of transplant. We also wanted to be stretegic about using the 1A time and at that time, there wwas no one with my blood type and body style ahead of me. Unfortunately, my blood type is rare enough that it was not a guarantee that I would get transplanted in those 30 days. Sadly, that time came and went without so much as a false alarm call. The good news is, that if my condition deteriorates to a level which would require me to move back up to 1A, I will have my 32 days of time accrued at 1A, which should help put me closer.
Throughout my journey from the time of being listed to now, I have been very intentional to look at the bright side of things. First and foremost, I recognize that without the heart pump or a transplant, it’s highly likely I would not be alive right now. Everything is bonus time, and I am determined to make the most of my time and to make a positive impact in the world with whatever time I am given. I know I’m in the overtime period of my life.
It’s hard to imagine what my situation would be like if I didn’t have the tremendous network of support that I do have, between my wife Amy, family and friends. I know that there are those in similar situations who do not enjoy the same support that I do. I also have had, and cherish the opportunity to visit people who are physically in much worse shape than I am to share my story as they wait to receive a heart pump and/or a transplant.
All of this said, I am finding it more and more difficult to do many of the things I would like to do. For a time, I was able to excercise regularly and thus managed my weight fairly well. Little by little over the past year, I have not been near as dedicated to that. In turn, my weight has increased and thus it becomes even harder to exercise. Further, I have not been as good at controlling my sodium intake, and thus some of my additional weight is water retention. I suppose its a cycle that is tough to break out of when your enegy and stamina are very low.
I do try to remain as actve as possible and much of my volunteering has helped that to remain the case. However, I am finding more and more that I need recovery days after any particularly active day or days.
Although I am not surprised that I did not receive the call during my 30 days at 1A, I can’t pretend that I am not disappointed about it. These 1000 days have been long and, at times very trying. I find myself battling the emotions often. I want others who need it worse than me to get theirs first. I want my future donor to have more time with his family and hopefully make a meaningful impact on his family, friends and the world before he passes the torch to me. On the flip side, I want to be be able to say, “I feel great” when someone asks me. I want to get on with my life by returning to work doing whatever it is that I will do when I am able again. O want to be able to travel with Amy again and not be limited by my inability to walk long distances, or climb lots of stairs.
It’s been a while since I publicly thanked all of those who have contributed to my Help Hope Live campaign, so I want to be sure to do that again. I am blessed beyond belief for all of those who have helped support us throughout this continuing journey. As always, I ask for your prayers for Amy and me. She continues to be a rock of strength through this. And please, pray for my future donor and his family.
Apr 03, 2017
Today is Opening Day - a holiday that has always held a special place in my heart (no pun intended). I had an odd feeling that something special was going to happen today, and it wasn't anything to do with baseball. Rather, I had a feeling I was going to get "the call."
When my phone rang this afternoon with a 216 (Cleveland) area code, I took a big gulp when I answered it. It was NOT "The Call" but it was a call to activate my bank of 30 days of 1A time.
What does this mean?
Typically in order to be listed at 1A, a patient must be in the hospital and in bad condition. I have had the good fortune to be relatively healthy and free of complications in the 2 1/2 years with my LVAD, so moving up was never necessary. Because I have an LVAD, and studies show patients who go into a transplant healthier, have a better chance of doing well through the transplant and beyond. Thus, they decided to grant all LVAD patients a bank of 30 days of 1A time to use when they are not in a dire situation.
The only patient listed at 1A with my blood type and body style was recently transplanted, and thus, we decided to activate my time to take advantage of the window.
Please understand, this does not guarantee I will be transplanted in the next 30 days, but it gives me a better chance of that than otherwise. The man who was standing in my way of activating the 1A time waited five months before he was transplanted.
The consolation prize if I do not get a transplant in the next 30 days is that I still accrue that time at 1A, so in the event my condition would deteriorate to the point that I needed to be moved to 1A again, I would be ahead of anyone who was recently added to the 1A list.
Please continue to pray for me and my future donor. I am a bundle of nerves at the moment!
Feb 14, 2017
Well, apparently, I am still quite a luddite. My posting of the video didn't seem to work, so here is the text of what I said:
Hi everybody! Today is February 14, 2017, Valentine’s Day! It’s...
Feb 14, 2017
I figured National Donor Day was a good excuse for a video update. See. I'm not such a luddite!
Nov 25, 2016
Special thanks to Amy for putting this list together for #GivingTuesday
Here are some FAQs about HelpHOPELive and why we are using them for our fundraising for Pat's Heart Transplant.
Sep 11, 2016
When I had my LVAD implanted on Sept. 11, 2014 I was told I could expect to wait a couple of years for a new heart. It's now been a couple of years and by all indications, I'm not particularly...
Jun 09, 2016
Tomorrow, Amy and I will drive to Cleveland once again. Only this time, we are not going to follow up appointments, blood tests or other heart related issues. In fact, there is a strong...
May 10, 2016
Who knows what tomorrow will bring.
After about six months free from Atrial Fibrillation, I received a call last week letting me know that my remote monitor sent my doctor a transmission that...
Apr 01, 2016
Tomorrow I will attempt to tackle my second 5k since I've had my LVAD. I don't run, but if intend to walk. Team Patulence is growing in numbers (we are at 5 who will compete this event to raise...
Feb 23, 2016
Three months. If all goes well (and I don't get "the call) I don't have to make the trip to Cleveland until May.
I had an appointment with Electrophysiology on Monday and I continue to have...
Feb 13, 2016
On Monday, I returned to the Cleveland Clinic for routine follow up appointments with my LVAD team, my cardiologist and my bone doctor. Next Monday, I will return for a routine follow up with my...