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. Unable to sleep after that news, we arrived at 5:30 am.
Around 1:40 pm, we were told that it was a go, and Pat rolled down to the OR at 7 pm.
At 4:45 am on August 13, the surgeon told us that Pat had received a beautiful heart, everything was stable, and they were closing him up.
By 2 pm, Pat was alert, extubated, and cracking jokes. His color was great, and his heart rhythm was beautiful- a great start to his "extra innings."
We are so grateful for the heroic and generous gift that we've been given by Pat's donor and their family. We are humbled, overwhelmed, and incredibly grateful for the love and support we've been shown by our family, friends and even complete strangers.
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 doesn't seem that he fell)... Anyway, after waking up on the floor and struggling to get up, Pat called 911 for himself (I was out of town) and was transported by ambulance to Kettering Hospital. After several hours and a CT scan, he was admitted to Kettering. Several phone calls later and it was decided that he would be transported to the Cleveland Clinic. Pat got a helicopter ride to Cleveland (which included a stop for gas!) and I hopped on a flight back to Dayton, then drove to Cleveland.
Another CT scan revealed that Pat had, in fact, had a stroke: a partial blockage on the left side (some blood was still able to flow around the clot) had effected his speech (he says he talked like he was a little drunk), caused his face to droop a little on the right side, and left him with weakness in his right arm and leg. Because of the mildness of the stroke (read: it could've been a lot worse!), Pat has mostly regained his speech (when he's tired, he still talks in cursive), the droop in his face is gone, and he has most of his strength back in his leg and arm. He's still working on his manual dexterity, but that's vastly improved, too. (Playing cards and tossing a ball as therapy for the win!)
So, where we at, Frank?
The most frustrating part of this whole ordeal -- for us and his whole medical team -- has been that Pat has been on blood thinners (and aspirin!) and in therapeutic range and this still happened. Quite frankly, we don't want to wait around to see if it can happen again -- we need Pat to be transplanted sooner rather than later, as the risks related to the pump have increased -- so Pat's cardiologist petitioned the committee to move him up on the list. He is now upgraded to level 1A. Every two weeks, his cardiologist will have to resubmit to the committee to keep him at 1A. From our understanding, there is one person ahead of him of a similar build and blood type; however, the list changes frequently.
Additionally, to hopefully prevent stroke, the LVAD team and Pat's cardiologist would like to run his coagulation rate in the thinner range, so he'll be here at the Clinic for another few days, at least, as they get that all sorted out and monitor his labs.
We are grateful for the concern, compassion, and thoroughness of our team at the Cleveland Clinic. As always, we are grateful for the love, support, and prayers of our friends and family. You sustain us through these wild days. Please continue to pray for us, for Pat's donor and their family -- we pray for you, too.
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...