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.
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