Update & More

I have good news and disappointing news.

The good news is that Patrick feels better most of the time. At one point a few days ago he said he felt 75% better, but tends to sit around the 40% level. This is good. He is slowly recovering. He can walk up stairs without being completely winded, although he can certainly tell that physical activity is harder than it used to be (and he knows when to save his energy for *ahem* important tasks).

He had a checkup in Seattle on Thursday and that's where the disappointing news comes in. They did a repeat chest x-ray and found that his pleural effusion has doubled in size. I don't have a copy of his October x-ray, although I wish I did for comparison's sake. But this is what his December x-ray looked like.

For comparison's sake, this is what he looks like with no pleural effusion. This x-ray is from February of this year, and you can see the difference below his right lung:

See that stunning wire work around his sternum? I will never fail to be impressed by how tightly the transplant surgeon managed to get them. He never felt his sternum crunch and slide together this time - not even once. After his 2007 bypass it was a nightmare. I still don't know what the difference was, besides the two different surgeons.

So Patrick will have the thoracentesis procedure done with a CT scan at the Fairbanks Memorial Hospital Imaging Center. Am I nervous about that? Absolutely. But complications are rare and Patrick is strong.

Now, for giggles, here is an x-ray from March 30, 2023, ten days before the start of his transplant surgery. It shows his pacemaker in amazing detail!

I think it's fascinating how it shows where is pacemaker leads are placed, and where they hooked up to his old heart. This pacemaker/defibrillator was Patrick's implanted paramedic team for 18 years. We relied on it to keep his heart beating evenly, and to bring him back from the brink of death when his heart was ready to quit. I lost count of how many "widow-maker" events he had. I lost count of 911 calls. I lost count of how many shocks he received from the defibrillator, and of how many times I held him while he waited for the shocks to finally work and pass.

I am not sad to see the pacemaker missing from the newer x-rays.

Back to those x-rays - what's interesting is he has 10 wires looped around his sternum from his bypass, and only 7 from the transplant. Maybe the quality of wire has improved?

We have access to the portal where we can view all CT scans with and without contrast, arterial scans, angiograms, and ultrasounds he has had through UW. They are FASCINATING. I browsed for nearly an hour when we found it in his chart, imagining how neat it would be to know exactly what I'm looking at, the signifance of the colors on the scans, what the shadows mean, exactly how healthy the arteries and veins in his brain are, or why his new heart looks similar in size to the old one. These are thoughts that will never be fleshed out, and questions that will never be answered.

But on the flip side, I have him. I felt encouragingly grateful the other day to have a husband next to me, making what Samuel dubbed last summer as "pig noises." It could be worse. He could be dead. I could be making plans for what to do with his things, how to donate his clothes, how to raise kids without him.

I did tell him a couple days ago that if he had died I would have traded in our king sized bed for a full sized mattress so I could create a reading nook in the bedroom. He cracked a joke about how crass it is to make plans like that when he's still here, but he knows. He really does understand.

I would encourage you to have those thoughts. Imagine those plans. And have those thoughts and plans for your family, as well. Our days are numbered, and when we find ourselves on the other side of kids, grandkids, careers, relationships - whenever our final day decides to show up - both we and our loved ones will be grateful. Because it could be tomorrow, or it could be sometime around 2075. We just don't know.

These are tough conversations to be had, for sure. But have them. We do, with each other and with our kids. It might not soften the blow of losing a loved one, but it will smooth the struggle after their passing, at least a little bit.

Or at least, for the love of God, write a will. Sign it. Tell people. File it with the court. Do your family a favor and help prepare them.

In the meantime, live your life. We are. We welcomed a lovely little addition to our family last month named Olive, and she has brightened our days immeasurably. I have reminded Patrick to wash his hands at least a thousand times since we got her.

Stay The Course

Just a little update for you guys.

Patrick is doing better. Yesterday he said he felt 20% better, but then last night he attempted to use his c-pap and it set him back. Now we know he can't use it until his lung issues are completely healed.

It was a rough night, and I'm exhausted.

The good news is we finally got his antibody testing back, and his level of DSA is 1,500, which is going in the right direction! He won't need another infusion, thank God.

As of right now we are to stay the course, and to focus on getting him rest and healing. He has his ups and downs, but if his recovery were a line graph it would have a definite upward trend.

Those dips, though... Damn.

Keep us in your thoughts and prayers, and keep sending those positive vibes!

First Cold Update

So, funny story...

The transplant coordinator called me this morning.

I had told all of you that I have been avoiding calling her. Why ask questions to which I really didn't want to know the answer?

I had written her an email this morning (my preferred communication method) asking if we should be monitoring his oxygen levels with our oxymeter. I knew the answer, but I suppose I wanted reassurance that the things I'm doing in my role as caregiver are the correct responses to what has been happening.

In the phone call she said yes, and took it even further to say we should be monitoring it at rest and after activity.

I also asked in the email at what point he should be going to the ER and she said if his oxygen drops below 94 or 95.

His oxygen levels are important because they are a vital marker of heart function. If his oxygen is high his heart is likely functioning very well and helping to oxygenate his body adequately. But if his oxygen levels are down there could be a problem with his heart function and he would need to fly to Washington to be further evaluated for diagnosis and treatment.

I even told her, "I have been avoiding calling you because all of this stuff is very heavy." I didn't have to say more. She knows, as her job includes being the middle-woman between very capable doctors and at times very worried patients and their families.

We spoke a bit about Patrick's current illness since that is what my email was in regards to, but before she got off the phone I said the words I really didn't want to ask - "Do you have a minute? I have some questions I would like to ask you."

Here are the answers in a format that, while retelling them, I won't end up worrying myself anymore than I already have been over the last few weeks.

Yes, Patrick's blood tests showed an increase level of Donor Specific Antibodies, or DSAs. These are present when Patrick's body creates antibodies to fight off the foreign body - the donor heart.

His levels were 4,800 at one point, and then 4,300. I do not know the dates of these tests. The last two antibody monitoring tests listed in his chart are for March 2024 and August 2024, but I thought he had one done in early October.

Regardless, what is important is that the coordinator said these results came out of nowhere - from a negative, or 0, result, to 4,800 and the 4,300. Because they happened suddenly, his provider wrote the order for the IVIG infusion.

Patrick did labs yesterday but we won't know the results of the antibody monitoring for a couple days.

And actually, about the test results - his WBC was 6.5, which sounds high. It's within the normal range for a non-transplant, healthy individual. I only checked that after I spoke with the coordinator, so I haven't asked her about it. The previous infusion paired with his current cold makes me confused about that WBC level and how it is outside of what seems to be Patrick's normal range.

A transplant recipient can live with low antibody counts, as long as they are stable. For heart transplant recipients it is also important that they don't have any effects on their heart function. This stability may be due to medication, or a natural balance created by the recipient's body. So again, Patrick's suddenly high DSA counts were alarming. However, she also told me she has patients who are upwards of 20,000 on their DSA counts. What makes Patrick's concerning is that he is still in the 6-months-to-2-years window where they want to set up recipients for success and monitor these things diligently.

Patrick has DSA. Does this mean he is in Antibody Mediated Rejection? This is another question I didn't want to know the answer to, thanks to Google and the widespread availability of medical knowledge I know nothing about but have little reservations to trying to understand.

"De-novo DSA have threefold increased risk of mortality."

And also, this little gem - "AMR is a major factor in reduced long-term survival after heart transplant."

I don't like you, Google.

I know, I know. Don't Google medical stuff. And yes, I know. Each recipient's journey is different, and just because Patrick has DSA and AMR right now doesn't mean we won't make it to our 45th wedding anniversary, or that he won't see 30 years with Andrew's heart.

And yes, we are still eternally grateful for Andrew, for his family, for the UW team and the providers that have led us to where we are today. Patrick always says, "If I died today, the heart transplant will still have been worth the time I've had since receiving it."

But it's hard. I spilled my guts to all of you in the last post. I dread bad news, but have grown extremely adept at handling it over the last nearly two decades. Every day it's a new challenge, but also every day it's a new blessing.

Well, doing the dishes isn't a blessing in my eyes, but being able to listen to a podcast while zoning out washing pots and pans... It's the small things, right?

We have no idea what the future will bring. We don't know if I'll be dress shopping in 2050 for a vow renewal in 2051 for our 45th anniversary. We don't know if Patrick will live to see our kids graduate high school, or marry, or have kids, or have amazing careers. We just don't know, but neither do any of you. And in that we can have solidarity - that today is a day to be thankful for.

Find reasons to smile today. And if you see me, I could use a hug.

I will update soon.