Amanda had her follow-up biopsy this morning after the last showed she had rejection. Even though she received multiple rounds of steroids and was monitored for a few days, this biopsy showed the same cellular rejection status 2R. That status is considered a moderate rejection, but in the real world, it is the first level that is even treated. So, in actuality, it’s mild rejection. This is disheartening to say the least, but I’m confident the Vanderbilt team will figure something out. The thing about being at one of the best hospitals, with a two-year running record as the most heart transplants, is that they’ve seen this many times before and know what to do. It’s why we moved a thousand miles to seek the best care. Nonetheless, that doesn’t make it any easier, especially since I’m still in Texas.
As far as the rejection, that’s all we know: the status and that they wanted her back and admitted tonight. She received the call while she was in dialysis. So she still needed to go home and pack a bag. It has been a big day, and this is just going to make it even longer. Her day started with a 6 am arrival for her first case biopsy, then she had to go to the other side of the hospital to get an echo, and then straight to dialysis. Now, right back to the hospital for who knows how long. Adrienne, the coordinator, called with the news and wasn’t sure of the plan either. Steroids, we know for sure, and then they may add some other treatment, as well.
We did get some good news last week. After a lower extremities sonogram, Adrienne called to say that the DVTs, blood clots, were gone. Meaning she could come off the blood thinner, and that the IVC filter they placed a few months back could come out. So during the cath today, they removed the filter. This caused them to go in through her neck and groin both. After the biopsy, they made Amanda travel through the hospital to get an echo in the Heart Clinic. I’m not sure why they couldn’t just send a tech to her recovery room; it wasn’t for a lack of trying on her part. They wanted one so soon because her last echo after the previous biopsy showed a pericardial effusion, which is where there is fluid between the sac surrounding the heart and the heart itself. We are all too familiar with that Amanda had the same issue before her second open heart. This was likely caused by the biopsy; the heart was just a little angry. Which is understandable, if you cut six pieces off of me, I’d be pissed too!
In other news, Amanda finally had her in-home sleep study. She couldn’t get much sleep lying flat during the study, but what little she did get was enough to show she had an average of 8.1 episodes of not breathing properly per hour! They are setting up a CPAP machine with a home health agency, but it will take a few weeks to get it. The swelling in her right breast that we dealt with in the hospital is back, too. They never settled on why, but the two top culprits were thought to be fluid retention, subclavian clots, or a combo of both. I think it was the latter. She has felt a little fluid overloaded in her abdomen, and the swelling happened not long after the blood thinner was stopped. So it seemed likely to me that it was both, but I’m no MD.
Leann swapped out with Rhonda, a friend and fellow praise team member, earlier this week. So far, everybody has gotten a taste of a hospital admission, not what we were expecting! There is no telling how long this admission will be. I hope not long, but who knows? It’s just going to be dependent on their treatment plan. It’s always cleared up quickly for us before, so we’re new to this extended cellular rejection. If there’s nothing to monitor, I just hope they won’t keep her too long, as this costs her time away from rehab and PT both. We don’t need any more setbacks in the recovery; we’ve had enough.
This really stinks all around, but I hate being gone for all of this. I need to stay here and work, though. Lord knows we need the money, but I need to keep that insurance going. The double effect of not working and having to pay thousands a month for insurance, not to mention all of our Nashville expenses, added up quickly without a steady paycheck. I need to at least work one round-trip, two days, in December, too. I have five personal days left; combined with the round-trip, they’ll give me the seven compensated days I need to get January’s insurance taken care of.
Also, it is the weirdest feeling here in our house. I get homesick the longer I stay here between work trips. Homesick in my own house, it’s a peculiar feeling. I’ve done nothing but work on the rails and on the house. I haven’t gotten much done on the house, though. I have been terribly tired and unmotivated. I guess I’m not as young as I once used to be; I can’t just hop back in the crazy 24/7 railroad schedule as I once used to. So, I haven’t been able to come home after an all-nighter and go straight to working on the house as I used to. It probably hasn’t helped that whatever sickness I had drug on for over 3 weeks, I just got over it about a week ago. Either way, the last couple of trips I’ve had a little extra time off at home, and that didn’t sit well with me. I need to be at work to keep my mind off things. Being back home has been harder than I expected it to be.
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