Apologies

I need to clarify a circumstance I wrote about in the one-year blog post, and apologize for any negativity I expressed.

As you all know, I get all of my information secondhand from Patrick - meaning, not directly from his providers. So when he vented frustrations to me about his first Neupogen shot at Fairbanks Memorial Hospital, I then vented on here with information that wasn't entirely correct.

Patrick's care from FMH has been exemplary. The staff at the hospital haven't always been equipped for his complicated case, but when it has been necessary, they haven't hesitated to bring in (or push him towards) the team in Seattle. This hospital-to-hospital working relationship has never been 100% smooth, nor will it likely ever be. But both hospitals do their best to maintain Patrick's excellent level of care.

So my frustrated and snarky comment that amounted to, "The right hand doesn't know what the left is doing," in regards to FMH was in error, and I apologize. After having it explained to me today, I now understand what was going on behind the scenes, out of my view, and how I jumped to the conclusions that I did.

You know what they say about making assumptions...

Also, Patrick has made a commitment to provide only the facts to me, much less colored by his own frustrations, in an attempt to ensure my updates are unbiased and true. He also apologizes, because he understands his role in this transplant update grapevine.

Grace isn't something I take lightly. I extend it to others in abundance, but don't often request that it be granted to me. I ask that now - for my previous posts, and future ones. You guys know I vent my frustrations here, and likely still will. But know that I am human, and I often make very human mistakes.

Much love to all of you - our friends, families, supporters, and the staffs at FMH and UW Heart Institute 💕

4/3/24 - Labs Update

I just wanted to pop on quickly for an update on Patrick's lab work. His white blood cells on Monday were back down to 1.9. This wasn't as concerning as the 1.3 from last week. The transplant team has hesitantly decided that if tomorrow his WBC is still low, they will decide whether he a) gets another Neupogen injection here, or b) flies down to Seattle.

I have still been sick, which is why I didn't post this earlier.

But I wanted to address again the fact of Patrick coming home from Seattle with his blood counts low.

I went back into his records and recorded every CBC he has received since the one right before his transplant. His numbers tell a compelling story, which is probably why I stuck it out after realizing what a hole I had dug for myself. I like numbers. They have always been calming for me; grounding for me. I may not have made it through Algebra II in high school, but spreadsheets and number organization have always been my thing. (Just the other day I followed a YouTube tutorial on building a mortgage amortization spreadsheet to estimate the progress on our young mortgage, just for fun....)

So, for your reading pleasure I have included an image of said record, dating back to February 2023.

As for his more recent records, if you take his WBCs from the previous seven months (August - February), the average is 3.58. If you go back to June, when they finally dipped below the 5s, the average for those nine months is 3.44. So I can see why the 2.9 he had on Friday, March 22nd, was enough to send him on his way.

Tomorrow we will see what his labs say and what his immediate future looks like. I don't relish the idea of another Neupogen injection because it really did a number on Patrick's body. But I would really like his early-March health back.

By the way, that biopsy they did on March 20th showed no rejection. He's my rockstar ❤️

One-Year Transplant Anniversary

[Photo is Patrick and our 16-year-old at the 2024 Fairbanks ComicCon]

Today is Patrick's one-year heart transplant anniversary! Our five-year-old and I are sick with a terrible cold, so this may not be as long or as eloquent a blog post as I had imagined for this occasion, but I'll do my best.

Patrick left for Seattle on March 19th for his one-year follow-up, which included multiple scans, tests, and labwork. He checked into UW on the morning of the 20th and completed his biopsy, labwork, and echocardiogram. Then he went back to the hotel to try to get some sleep, after having barely slept the night before. 

He received a call that afternoon stating that his CBC came back with dangerously low numbers and that he was to be admitted to the hospital immediately. Everything was low - his white blood cells, his red blood cells, his hemoglobin, etc. - and they needed to find out why. 

It turned out that he had Rhinovirus and somehow it caused his numbers to tank instead of increase. But with a decreased immune system, this virus could kill him.

While in the hospital they gave him one Neupogen shot, which is a medication that stimulates the growth of white blood cells. It is often used with cancer patients, and couldn't have come at a better time. Patrick's white blood cell count was 1.3, when a normal range is 4.5 to 11. 

In the days he was at the hospital they watched his numbers and decreased one of his immunosuppressant medications, his Mycophenolate. This would give his body enough of a chance to build up a immune system to fight the virus while the Neupogen did its job. 

By Friday, March 22nd, Patrick's white blood cell count was up to 2.03, and he was in fine form. Meaning, he bugged and harrassed and begged and annoyed them (in true Patrick fashion - with kindness) until he was given permission to be discharged to make his flight home Saturday morning. His Mycophenolate was reduced from his original 2,000mg to 500mg, with strict instructions to repeat lab work in Fairbanks on Monday morning. The kids and I picked him up from Fairbanks International Airport on Saturday. We had missed him terribly.

On Monday we brought him to the hospital for labwork, and in just a couple hours he was told his WBC was back down to 1.3, dangerously low. And his transplant coordinator didn't even know he was in Fairbanks. She called him to tell him to get back to the hospital because he needed to be admitted. And when he told her he wasn't there anymore, she said it was unheard of for the team to release a transplant patient in his condition.

Good ol’ Patrick. I was actually quite upset all weekend, and even more so after his lab results on Monday.

After some drama at Fairbanks Memorial Hospital where Cardiology had no idea the cancer center administered Neupogen all the time (and panicked because they thought they couldn't give Patrick what he needed), a shot was found and he went in at 5:00pm to receive it. 

And the next two days were ROUGH. That afternoon we went grocery shopping and Patrick felt weak. He described it as the sensation he felt after being shocked by his defibrillator. That was discomfiting to both of us - that he was experiencing something we had hoped would be gone forever. 

That night his feet burned. It was different from the usual symptom he experiences when he has a lack of sleep - the stinging sensation. 

And the lethargy and “off” feeling slowly went away over the next two days. On Wednesday, March 27th, he repeated his labwork and his WBC was up to 2.9. Still low, but much better than it was! He had been doing so well with the reduced Mycophenolate and that first Neupogen shot that they decided not to repeat it at that time.

Unfortunately our 5-year-old had spent the entire previous night coughing, and on Wednesday I could feel the first symptoms of a cold starting. It has only gotten worse since Wednesday. The two of us are staying home today from Easter church service, and Patrick has our oldest three with him in town. 

This is part of what we signed up for - managing illnesses, and keeping away from Patrick whenever anyone feels any kind of cold symptom. The five-year-old is missing Daddy's hugs and snuggles, so since we're both sick he has been getting extra from me. 

Patrick will repeat his labwork tomorrow and we will see where he is at with his numbers. I am worried about the reduced Mycophenolate dose and the increased risk of rejection. UW called Patrick to schedule an emergency CT scan, the scheduler obviously not knowing he's here in North Pole, Alaska, and not in Seattle. So they will work with FMH to possibly coordinate the CT scan up here. 

Also, his doctor would like to repeat the biopsy, and there are tests that Patrick wasn't able to complete because he was admitted to the hospital while in Seattle. So at some point we believe he will be called back down to Seattle to complete those. 

In the meantime we are a family walking on eggshells. We are doing everything we can to keep this cold away from Patrick, which includes a lot of saving Patrick from himself. I caught our little boy drinking from Patrick’s cup the other day and had to point it out to Patrick. He is also used to picking up my opened soda cans and dumping them into his large cold-cup, and he did so with one on the counter before I reminded him that I had already drank from it so it was contaminated. 

We will get through this. We have spent the last nineteen years not hiding from his symptoms, and at every turn facing the possible consequences with clear minds and gentle planning. We have had cause to say recently, it would suck for him to make it a year out from his transplant, only to die of a cold. 

I don't know when I will update the blog next. If we get negative results tomorrow from his labwork I will definitely update, but if they are positive and going in the direction we want them to, I might hold off. Likely, because I'll be in bed asleep with a cold! But just in case - no update means we received good results. 

I started this blog on December 12, 2019. My dad had passed away two days earlier, and Patrick had been admitted to the ICU on the same floor as my dad, although on the opposite side, to begin Tikosyn, the dangerous arrhythmia medication. As Patrick was fond of saying in those days, writing helped me cope. We gained some followers in those early days of the blog, and appreciated every read and comment.

Then, after struggling in isolation during our Covid diagnosis, on March 23, 2020 I went public with our Covid experience, to help me cope with what we were going through but also to combat the rumors that Covid was fake. The news picked up that story and the blog gained yet more followers. 

Throughout the years I informed and entertained you with the blog, posting anecdotes and thoughts, funny Patrick-isms and the goings-on of our family. 

Then on December 6, 2022, the real work began. Patrick was on the transplant list. 

And through it all we gained more followers, more support, more friends, more love, and a village we continually and increasingly leaned on through the hardest moments:

December 23, 2022 - Call Number 1, "Steve"

January 13, 2023 - Call Number 2, "Alex"

February 11, 2023 - Call Number 3, "Brandon"

March 20, 2023 - Call Number 4, "Jayden"

And the one that Patrick will carry with him for the rest of his life:

March 30, 2023 - Call Number 5, "Andrew"

We have not forgotten the four men who passed away, and whose hearts Patrick did not receive. We still have a huge amount of love and gratitude for their families. 

Andrew lives on with us, and he and Patrick make a great team. 

To those of you who have been with us since the beginning, to those of you who have joined us part way through this journey, and to those of you who will find us after this anniversary post, we thank you. You are our village. We couldn't have done this without you, and your love and prayers in the future will forever be our lifeblood. 

And if you see Patrick, bring on the fist bumps. His immune system is extremely low and he can't fight off infection at the moment. 

Feel free to tell him to take his a** home!