That title is just as scary to write as it is to read; no, I’m sure it is much more frightening for me to write than for you to read. We don’t know specifically if we are in a full-blown rejection or what level it is. Sadly, we won’t even have the answer to that question on this trip to Houston. We do know that Amanda had a higher level of donor-specific antibodies in her yearly labs. These are precisely what it sounds like: antibodies specific to the donor and present in the heart. There may be a small level of them in Amanda’s blood typically, but it is a trace or not even detectable, but it can be a precursor to rejection when that level gets high. That is where we are at right now.
Sadly, we are in a spot of unknowing. We have been there since the last day of our heartiversary trip when Amanda received a call about the antibodies and that she needed to start a new immune suppressant. This trip is to have a coronary artery CT scan and to have the rejection labs drawn. The CT will reveal if there is any graft failure and how bad it is. Graft failure is the scariest part of any transplant; that is what we are constantly fighting against. Once graft failure is bad enough, the only fix is another transplant.
Let’s step back for a minute while I gain my thoughts. When we were in South Dakota and received this news about the high antibodies, I don’t want to say it was devastating, but it was disheartening. We just don’t know anything and won’t for a week until the labs return unless the CT shows something drastic. It’s not panic mode yet, but it could be, and the unknown is sometimes just as bad. I’m so glad we found this out on the last day and not the first of our trip. It was such a fantastic trip, my favorite right next to Yellowstone and Grand Teton, and it would have been tough to get through if we’d had this in the back of our minds the entire trip. Or worse yet, we had to cancel the trip altogether before we started.
Rejection is not well-known, and there aren’t broad enough case studies on it. The first heart transplant was just over 50 years ago, and it started becoming more frequent in the 1980s. Thus, there is not a vast spectrum of cases, let alone studies on specific types of rejection. As with all medicine, it’s an ever-changing field. As we learn as we go, so is this entire transplant field of medicine.
So what caused this or any rejection is sometimes just an unknown. Amanda was fine until the incident that caused us to seek a protection order against someone. Correlation does not imply causation, but heart-wise, she was doing great until she had an acute stress reaction to that exact situation. My common-sensed brain does imply causation, though. Whether or not that incident caused this current issue, we’ll never know for sure. We have been downhill ever since, that I do know. Amanda is the most compliant patient ever. I don’t think she has ever missed an anti-rejection medication dose, and she follows all transplant team instructions to a T. Thinking that someone could have caused rejection to start makes my hands shake in anger as I type. That said, I don’t think I’ll have anything else productive or positive to say on that subject.
When researching symptoms of rejection, all of her symptoms fit in that category. When I say all, I mean every single one fits. Honestly, when reading that for the first time, I was sick to my stomach. We don’t know right now how worried to be. Amanda asked her coordinator how worried she was, and she said not to worry yet, but it was concerning. Outside of Amanda’s first bout of rejection right after the transplant, this is the scariest it’s been.
The science behind all of this and reading the abstracts from different studies makes my head hurt! There are various types of rejection, mainly cellular rejection, which is an immunological “attack” on the foreign donor organ. That is what Amanda had right after the transplant; loads of steroids fixed that. This is where we found out that roid rage and roid hunger are both very real!
Antibody-mediated rejection is the other and what we are facing. It is a relatively new diagnosis, and the lab tests to check and prove are ever-changing. This quote is from an American Heart Association Journal from 2015 and sums up my feelings on it: “Antibody-mediated rejection (AMR) of the cardiac allograft is a poorly defined and challenging diagnosis for transplant recipients and their clinicians.” Given that we are almost 10 years from that publication, the interwebs still aren’t forthcoming with information on this subject.
Antibody-mediated rejection is more on the molecular level and way over my head. I’ll post a picture that gets to the cellular level and explains it in detail, but I’m not remotely smart enough to understand any of it. At a 30,000-foot view and as simply as I can describe it, is the donor DNA is in Amanda’s blood more than it should be. This, in turn, will cause graft failure, the vessels that connect the donor heart to Amanda’s body. I really wanted a Q&A session with the cardiologist to bombard him with questions and my hypotheticals. It’s probably good that we aren’t seeing him on this trip!
There are different types of treatment for this type of rejection. Amanda was preemptively put on another immune suppressant already to start to ward off any more rejection. There are various other treatments I won’t even begin to try to describe or go into at this point. Amanda has voiced concern about the treatment causing longevity issues with the heart. We are just in the dark in all this. We have an appointment with the doctor in December, but we’ll be squeezed in sooner if things are bad. So the longer we wait, the better, but that means the extended time in limbo, too.
I haven’t been this detailed in a medical post since the Caring Bridge journal days. If you’ve been following us since those days, first, you’re the OGs and have been through a lot with us. Second, you know how I had to lay out and explain many different complicated heart issues, surgeries, procedures, and so on. We don’t have nearly as many followers now as we did in the trenches back then; I guess impending death brings more attention than traveling the world with a new heart! Let’s just say I like researching travel destinations, going into depth on our latest fine dining meal, or sharing pictures of begging burros having a heart cookie snack better than I do making posts like this.
All that being said, with my anxiety about this on full display here, we know how the story ends! We’ve been in the trenches, seen the very bottom of the valley, and know how God can handle these things. We’ve been brought through and seen God use our challenging situations for His good, and we’ll see him do it again. I can confidently say no matter what we face, I know God can use it for His good and glory. I understand it may not be for our good, but I sure would like to return to writing posts from a scenic location, not a hospital waiting room! I’m praying this is short-lived, but knowing who’s got this if it’s not.
Amanda led “See a Victory” Sunday morning as a worship song. I’m not sure why she chose that song. Maybe she needed it, maybe I did, maybe someone in the congregation did, or maybe we all needed it. It speaks to how God gives us victory through Jesus. It also speaks to how you can stand on the authority of God’s word for whatever comes against you. That is precisely what we are doing.
I’ll close this with some of the lyrics from this song:
The weapon may be formed, but it won’t prosper
When the darkness falls, it won’t prevail
‘Cause the God I serve knows only how to triumph
My God will never fail
There’s power in the mighty name of Jesus
Every war He wages He will win
I’m not backing down from any giant
‘Cause I know how this story ends
You take what the enemy meant for evil
And You turn it for good