Fundraiser, Q&A In The Works!

This is the update I posted to Facebook a few days ago and forgot to post here. I apologize!

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It has been a while since our last update but that's because no news is good news. Patrick has continued to progress in his recovery, and is close to being discharged from the hospital to begin his transition at Transplant House.

We have the results of his second biopsy from Monday, and they weren't as good as the last one. They state in part, "Diffuse mild cellular rejection." The grade appears low, 1B, but that is an increase in rejection from the previous biopsy. I am waiting on a call from the hospital to see if I can get someone to explain that to me. Until that happens I can't worry. With as much as I have on my plate these days, that is something I don't have time for.

With that being said, I talked to Patrick about my earlier assertion that he is not the type to sit down and write out his thoughts and feelings. We have decided to open a Q&A for a future post and would love to answer your questions!

I'm asking that anyone with questions please put them in the comments of this post, or email us at the shop email [alaskasfarnorthernknives@yahoo.com], and I will speak to Patrick this week to record his answers and type them out in a follow-up post. This is your chance to delve into his terribly complicated, somewhat immature, love-filled, fascinating mind! He understands the plan and is expecting the questions.

Also, there is a local fundraiser in the works, being organized by Patrick's sister Nan. It will be held on May 20th at the Fairbanks Curling Club from 3:00pm until 8:00pm. We decided on Mexican foods which worked out well because that has always been one of Patrick's favorites. The full flyer will be available soon. We are currently accepting donations for food and supplies.

Oooone last thing - thank you to everyone who commented on the post where I did talk about my emotions. It was helpful to hear information about how Patrick's current medications could affect his attitude. You guys gave me the reminder I needed to up my grace when it comes to Patrick's current situation.

That's all for today. Again, ask your questions in the comments, or you can PM this page if for any reason you would like to ask them anonymously. Questions won't be attributed to the person asking them, but some subjects might be sensitive and there aren't many things I can think of that would cause us not to answer. We're an open book!

Biopsy Results!

I posted this to Facebook but forgot to post here. Thanks to Kevin Hansen, a gentleman going through the same journey who we have connected with on Facebook, we found the biopsy results.

No Significant Rejection

Woo-hoo!

4/15/23 5:45pm - UPDATE

[Written at 1:00pm, posted at 5:45pm]

Once again I'm on the plane but we are headed home. We played switcharoo with plane ticket dates but decided Saturday the 15th would be best.

Patrick is doing better today than he has since before the incident on the 10th when he had to go in for another open-heart surgery (via an incision below his sternum rather than a sternotomy through his bone). He was switched off a diuretic that was intended to help him lose water weight which was instead giving him intense muscle pain throughout his entire body. Now that he is back on good ol' Lasix he feels much better and is getting himself in and out of bed on his own. He is also losing some of that water weight, which will hopefully lessen enough to make walking more enjoyable. He is currently trying to do his daily walks on feet that are ballooned to twice the size they should be.

While I wish Patrick could sit down and type out his every feeling, reaction, and emotion surrounding the transplant, that's just not who he is. So you guys are stuck hearing my every feeling, reaction, and emotion.

The last few days were by far the hardest of this experience for me. One of the hardest things for me to deal with in our marriage is when one of us is unhappy with the other. I like joy and happiness and contentment. I don't deal well when we have discord.

Without going into detail because that would take ages, I can say we had quite a bit of discord this week. Most of it was due to Patrick's discomfort, his pain, and his frustration - all completely reasonable. But I had a two-fold cloud hanging over my head. I was upset because he was completely disregarding my emotions, thereby causing me to feel completely useless and cut out of his medical care. But I was also struggling with feeling selfish for wanting him to be more considerate of my feelings when he was going through the single hardest, most traumatic event of his life. Mentally, I wasn't okay this week.

And these things caught me completely off guard, which was one of the reasons why it hit me so hard. I had anticipated my presence bringing him comfort, and there came a point when it didn't. In fact, it seemed to do the opposite and agitated him. I had expected to be able to help him but he was in so much pain, and so worried that his kidneys were going to fail, that there was nothing that would help him once he decided to forgo pain medicine.

And when I did the only thing I could do, which was to keep the kids and I busy during the times between hospital visits by seeing sights, visiting stores we don't have in Fairbanks, and exploring some nearby attractions in Seattle, he accused me of treating this like a vacation. In a sense that's exactly what I was doing, because the alternative was to worry and cry and stress 24/7. But the shopping for a few momentos and utilizing the family passes gifted to us for the Seattle Aquarium and the Woodland Park Zoo was godsent time because it kept our minds off of our worry for Patrick.

And being in Seattle during these last two weeks has meant I was there when he needed me - whether he knew it or not - during the balloon pump plug rupture and the internal bleeding episode on the 10th. (Honestly, I don't think any of the blood in Patrick's body is his own at this point. He has received SO MANY transfusions! During the transplant, after the plug burst, after the internal bleeding... Good grief).

Onto more of his update...

A couple days ago one of his providers, a NP at UW Medical, told me they felt his kidneys had turned a corner. He wasn't getting rid of fluid the way they wanted him to, and his kidneys took such a big hit during the second open heart surgery that they weren't functioning properly. Dialysis was discussed but not implemented, and I'm hoping we have passed that point and they just needed some time to recover.

I also don't have the results of the biopsy. The last time I asked Patrick about it he wasn't in the best frame of mind and he said he didn't care what the results were. I'll call the hospital soon and ask if he has been given results.

As for when we will see him next, I am hoping sometime between mid-May, when school ends, and mid-June. Patrick will find a reason no matter what time I choose to tell me to stay home, but sometimes I feel beyond listening to him. By May he should be in the Transplant House and on his way to recovery. We can drag him to the aquarium and the zoo and remind him that what is important is making memories with the kids.

As always, we are grateful to Andrew and his family. We don't know if we will ever meet them, but with the news coverage Patrick has received we think there may be some families out there who suspect their loved one's heart is now beating inside Patrick's chest.

To you, we say thank you (and forgive us for the liberty of naming him Andrew - we would use his true name if we knew it). As I have said before, we love you. And we hope you are proud of the man to whom Andrew's heart has given the gift of life. You have given me what will hopefully be decades extra with him, and I can't fully express my gratitude, or what that means to me. Patrick will not let you down. The heart now beats inside a man and has taken up the role of his servant's heart, and Patrick's goal is to never take it for granted - not for one single second. He will spend the rest of his life paying it forward, continuing his life's mission to help the elderly, to ensure they maintain their dignity and individualism to the very last, and speading God's love in any way possible.

Signing off for now. I will update again when I learn more information. We are about thirty minutes out from Fairbanks and I need to mentally prepare myself for snow...