Health Update Part 1

Long time no write! It’s time for an update to bring everyone up to speed…Let’s rewind to almost 4 months ago in September, the 8th to be exact. I started to feel slightly short of breath when carrying stuff from the car, but also walking around the block with a pup I was watching. The next day I called my transplant team and told them what was up even though I already had clinic scheduled for that Tuesday for my “every-three-months” appointment, so the timing was “perfect”.

At those appointments I always start with labs first and then go to x-ray, pfts(pulmonary function tests), and finally meet with the nurses and tx (transplant)doctor. My PFTs, which are a breathing test that checks for lung function levels. My levels were down a bit, lower than I thought they would be. They went from 108% in June, to 60% in September. When the technician told me what it was, my jaw dropped in shock. I was surprised because I was NOT EXPECTING it to be that low since I didn’t even feel that short of breath. After that, I had to sit in the waiting room to wait to be seen by my doctor. That gave me time to process the information and for the numbers to set in which made me start to spiral with a few tears. Once I saw my team, we decided that I needed to get a bronchoscopy ASAP! Two days later, I got the bronch done. They said everything looked good inside and there were no signs of infection or rejection, yet my numbers kept dropping. First it went from 60% to 50% in a matter of two weeks, then 5 days later it dropped to 43%.

One of the risks of getting a bronch done with biopsies is that they could potentially poke a hole in a lung… which ended up happening to me for the first time. This resulted in them needing to keep me overnight for observation because it hurt to breathe. In the meantime, they wanted me to give me a steroid burst which is a high concentration of solumedrol infusions for 3 days in a row.

Waiting for test results is always a delight… said no one ever! I had to wait 5 days to hear back about the bronch results which ended up being fine with no cellular rejection/acute rejection. They also did a Clinimmune test, which is something they can add to your labs. Apparently those also take some time to come back and finally after around 2 weeks, we had some answers as to why I was feeling that way. It’s because my body had now identified my lungs as foreign and started to create donor-specific antibodies (DSA) which I found out lead to antibody-mediated rejection (AMR) on September 25, 2024. The reasons why this can happen is from insufficient immunosuppression, immune system activation by infection, or graft damage.

In order to treat this aggressively, they had to put in a new portacath since I didn’t have one anymore after transplant. A portacath, port for short, is a small catheter device inserted under the skin in the chest wall giving intravenous access to the heart. The treatment plan was intense, so I had to get admitted into the hospital for about two weeks. During the 16 days inpatient I did 8 sessions of plasmapheresis, 2 Rituxin infusions, 2 IVIG infusions, 2 rATG infusions, 2-3 Carfilzomab infusions, and Solumedrol. All these treatments were important and none of them were fun, but the one that gave me the most complications was plasmapheresis, which is the process of removing plasma from my blood and in turn takes the antibodies out. They inserted a barbarian-like tube into my neck which is typically used for dialysis.

At first the feeling of pressure in my face was very slight, but it was familiar from when I had a blood clot in my SVC (superior vena cava: the main vein that leads to the heart) in 2013. As the days went on it progressed with increased pressure when I would bend over forward to wash my face or anything requiring that type of movement or when I tried to lay flat in bed. I would compare the sensation to having your head hang upside down for a while. Basically, the blood in my head was not returning properly back down to my heart. I had a feeling what could have caused this, but the team kept thinking it was the thick tubing of the line in my neck. On the second to last day in the hospital, they took the line out of my neck and said I should start feeling relief. No such thing happened, so then I really knew what was going on. The following day, which also happened to be my last day, I requested a CT with contrast instead of the ultrasound of my neck. Low and behold I was right!! It was a blood clot in my SVC at the end of my port line! I knew it! I’m glad I was firm on my request, but I wish I requested it much sooner. Four days later, they took the clot out.  Less than two weeks after my eventful hospital stay and all of that “poison” in my body, my lung function sunk to 27%  which was devastating and frustrating.

The doctors all said that it would take up to 3-4 weeks before I started feeling any better. Once I was back home, I still had two more Rituxin infusions left. Those infusions would make me feel much worse for a week after I got them which sucked because it was already really hard to breathe. I was told to trust the process despite all of the uncertainty leaving me to believe that this was just the beginning…