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 also National Donor Day. Further it is the 890th day since I was added to the waiting list for a heart transplant. While it is likely I will have to wait another year or more, I am optimistic that God will provide when I need it most.
I know many people who are in much more desperate need than I am right now. I am so grateful for the gift I have been given of my LVAD, which was placed in September of 2014. WIthout it, or a heart transplant, I would not be here today. With it, not only am I here, but I am able to function and be relatively independent. Although I am unable to work, I am able to drive. I am able to do my own dressing changes and have, thank God, been free from infection since I had the heart pump placed. I have also been able to do some volunteering with LifeCenter in Cincinnati and Life Connection in Dayton. This has brought me great joy to share my story, listen to others who have been affected by transplant in some way and spread the news of the great need that still exists for registered organ, eye and tissue donors.
Please, on this National Donor Day, take the time if you haven’t already, register to become a donor. You can save up to 8 lives with your gift, and can positively affect hundreds of others. Not only is it the recipient’s life you will change, it is their family, friends and anyone who comes in contact with them that will be affected. Organ donation is an amazing way to leave a tremendous legacy.
This week, I will head to Cleveland for a series of what I hope will be routine follow up appointments. It includes a right heart catheterization, which is the best test to see the current condition of my heart function.
As always, please continue to pray for Amy and me. Please also pray for my future donor and his or her family. Give Love. Give Life.
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...