Two months ago today I was waking up from what, in all reality, was a 3-year-long dream.
Today, I spent the morning having breakfast with my wife, and amazing caregiver, Amy. We followed that up by strolling through the park, and walking around the lake at Carriage Hill Metro Park. Every time we go for a walk, I am thankful again for my donor and donor family. I am in awe at how good it feels to walk. I don't have to stop to catch my breath every couple of minutes. The only stops we made were to enjoy the nature around us. Not once did we stop because I was winded.
All I can think of was how I used to have to strategically plot out my route from point A to point B to conserve energy. An economy of steps to get me to a point of rest was what I needed. Now, I just go and marvel at how easy it has become. Every day, I wake up thankful for this gift. Every night I go to sleep thankful for this gift. It is nothing short of a miracle.
I sent a letter to my donor family about a month ago, and hope to hear back soon. Please, as you continue to pray for me, also continue to pray for my donor family. I think of them often and how they are coping with their loss. I wonder how many other's lives my donor saved that day.
Aug 20, 2017
Well, it happened! It really, really happened! God found the right heart for me and at the right time. For nearly the last three years, I've been patiently waiting. I said over and over that I kept meeting people who were sicker than I was and that needed those hearts that came along more than I did at the time. My line always was "when I need it most, my time will come." And as much as that may sound like guarding against disappointment, it truly was not. I am so blessed to have had 1066 of the 1068 days with the LVAD that gave me the luxury to patiently wait and to fully trust that God had the plan in order and all would work out. And it has.
Except there's that one piece of this wait that nagged me over and over throughout my transplant journey and that was knowing that my joy was going to be some else's tragedy and some other family's heartbreak and loss. In this very emotional week, this has only become more amplified. My joy is greater than I would imagine and I find myself sobbing at random times, sometimes to the point of “ugly crying.”
As much as I have been overcome by the outpouring of prayer, generosity and simple/not so simple ways I have been supported throughout these last three years, I’m bowled over again and again this week as I see our Facebook posts border on viral, cards, gifts and visitors travel 4-8 hours to spend some time with me as I rally. I’ve also been visited by the Moser family who adopted us sight unseen three years ago when I unexpectedly received my LVAD. I had a place to stay for the duration of time I had to stay in Cleveland after discharge. I had a place to stay every time I traveled to Cleveland for follow up appointments. And, yes, when I get discharged (likely at some point this week, I will go to the Mosers abode "Miss Daisy" style in the back seat of the car with a pillow protecting my sore chest.
This week will be all about educating myself and Amy for the changes that we will now face with whole new and different lifestyle, medicine regimen and more. I don’t know when I will be able to return to the workforce. It sounds like at least a year. When I am fully ready for that transition, I don’t know where God will call me, but I must admit my time volunteering in promoting organ donation seems like an avenue to explore.
So before I wrap this up, I want to again thank you all from the bottom of my awesome new sleek healthy heart. And please, please, please pray for my donor and for his/her family who is grieving so intensely right now. Pray also for those families who will face that critical life-saving decision in the future. May my life and the lives of others saved by them honor their ultimate gift.
Aug 15, 2017
The longer version will come later, but for now:
On Saturday, August 12 at 12 am on the dot, Pat received the call that a heart may be available for him. We were instructed to arrive at 7 am....
Jul 23, 2017
Well, that escalated quickly.
Early in the morning on Wednesday, July 19, Pat suffered a minor stroke. After waking up on the floor (yeah, we don't know what's up with that, either, but it...
Jun 05, 2017
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...
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...
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...