Moving Forward...

As most of you probably know, Patrick did not receive the heart transplant.

The 25 hours starting just after 8pm on Thursday, December 22nd, and ending just after 9pm on Friday, December 23rd, were the most traumatic, difficult hours of Patrick’s life. Numerous times his hopes and dreams were lifted to astounding heights, and then left to tumble down to the lowest depths of nightmarish proportions, often in the blink of an eye. This cycle repeated itself over and over.

My last update was on Friday at 10:34am. I announced that Patrick would be coming home.

The emotions Patrick was feeling during that span of time are likely obvious. Hope. Dismay. Terror. Excitement. I don’t feel like I need to go into a long discourse on those emotions. But there are two I would like to touch on here because… well, you’ll see.

There are various reports online as to who is the longest living heart transplant recipient. Some articles say the patients lived 33 years; some 34; some 35. One gentleman in the UK was said to have lived for 38 years.

In Patrick’s mind the number goal is 30 years. And on Friday he felt that he had lost 30 years of his life.

There is no way to estimate how long Patrick might live after receiving a transplant. I always say he could simply die on the operating table. He could live a day. A week. A year. Quite a few people die within ten years. But Patrick insists he will be the anomaly, living three decades after the day he receives his transplant.

Due to his positive outlook and lofty goal, finding out he missed the window to receive this heart transplant made him feel like he had lost those 30 additional years of life. As irrational as that thought might be, the human brain isn’t always known for being rational. I can’t blame him for that disappointment. What a devastating thought that must be to carry around.

The second emotion I want to mention is guilt. Yes, Patrick has said he feels guilty for missing the window of opportunity. He feels guilty for not getting the transplant for the sake of his family. I have told him, “You shouldn’t feel guilty. You shouldn’t feel shame for something you had no control over.” But he insists it was in part within his control and he chose the easiest route - to stay in Alaska with his family.

The doctors in Washington have given him an eight hour window to get to the hospital, and with as many flights that leave Fairbanks and fly straight to Seattle, this shouldn’t be an issue.

That is, unless a rare and extreme winter storm grounds all flights flying into or leaving Sea-Tac.

It was possible for Patrick to find lodging in Seattle. It wouldn’t be free and it likely wouldn’t have been close to the hospital, but he wouldn’t have had to deal with the barrier of a 1,500 mile flight. But under the advice of his doctors he stayed in Alaska and therefore feels guilt for the events of the 22nd and 23rd.

It is currently just after noon on December 27th. Patrick just called me to say he is still sad, and that he feels horribly traumatized by the experience. We have planning to do to lessen the chance that history will repeat itself.

Planning is what I do. You should see my camping checklist. It’s impressive, in my opinion.

The kids will have bags packed with everything they will need for an extended stay at our friend's house. This includes clothes, toothbrushes, chargers, toiletries - anything they might need for a stay of three days up to two to three weeks.

I will have a bag packed with the same things, for the same amount of time.

Patrick’s suitcase will remain packed. His is the most important.

I will write down notes for our friends with details they might need to know about the kids - who wakes up during the night; who takes medicine; who has schoolwork. And I’ll do the same for our golden retriever - notes about his potty habits; about when he eats; items he is likely to destroy because he loves to chew.

I will make a note to hang on the shop door: “Gone for a heart transplant. Be right back.”

We aim to be more prepared for the second call. The first one came in two and a half weeks. The next one could come any time, or it could be weeks or months out. The transplant coordinator told him it was surprising how many times Patrick’s name came up as a possible recipient. 5 to 7 times, he said.

In two and a half weeks.

They want Patrick to receive a heart.

Our next discussion is how to get Patrick a place to stay in Seattle so he doesn’t miss another opportunity. The time for him to be away from us is now.