Health Update Part 2 — Lung Story Short...

Being at home after 16 days in the clinker was good but also hard. Everything had become very difficult and felt both physically and mentally demanding. Brushing my hair and my teeth required me to sit down, and showering was becoming so much more laborious that I had to purchase a shower chair. I could tell my lung function had dropped since the last time I did PFTs right before going into the hospital.

Four days after coming home, they decided they were going to take the blood clot out of my superior vena cava. At first, they made it seem like we were going to wait and see if the blood thinners would do the trick, but then I suppose someone thought going in and taking it out would be better. I was 100% on board with this decision. They did a procedure where they went in via my groin and then through my femoral artery. The clot ended up being more substantial than they thought based on the CT imaging (photo of the clot in the previous blog post). Thankfully no complications occurred so it was quick and straightforward!

The Rituxin infusions that I was continuing to receive were making me feel considerably worse to the point that breathing was exhausting and strenuous. The nurses and doctors had said that I would feel worse after because the fluid from the infusion around my lungs was making me feel that way. I couldn’t even walk out of the infusion center and needed to be transported to my car in a wheelchair.

At the height of the rejection and infusions was the scariest time for me because of how awful it felt. There were some nights that I couldn’t even wash my face because it required too much effort to stand that long and bend over. Catching my breath from walking to the bathroom and back took a long time even though the bathroom is attached to my bedroom. When going to bed I had to ease my way down because I couldn’t just get into bed and lay down immediately. I had to sit on the edge of the bed, lay sitting up for a moment, and then slowly work my way down at an angle. I couldn’t lay flat. Switching what side of the body I was lying on would make me short of breath. My breathing was so erratic that my partner Chaz said it sounded abnormal when I was asleep.

Aside from trying to get comfortable, something else that was very challenging was showering. The basic task of simply standing became so grueling that I ordered a shower chair which I’ve never had to use before. This was a sobering moment for me because I could feel how weak I was and see how thin I had become. My appetite had completely disappeared at this point and I was continuing to rapidly lose weight. At one point I started to mainly use my G-tube for tube-feeding formula to gain weight.

After having my PFTs drop to 27%, I had to change my thinking and my game plan. I no longer believed I was going to see improvement from the infusions and plasmapheresis. I also felt like I needed to be more open to the reality of needing a second transplant, and I had already made up my mind about where I wanted to try to get accepted. Thankfully my main transplant doctor was also on board and had an “in” with Duke. She is amazing and it’s been very reassuring having her on my team. Dr.Gray came from Duke before she joined the Colorado team so I knew she came from the best!

After the appointment I had with her to address the drop in lung function yet again, my sister Laima decided she was going to treat me to breakfast and a pedicure! It was nice to do that after a hard conversation with my doctor. And in true caregiver fashion, Laima got to “work” researching things like housing and neighborhoods in North Carolina near Duke.

Getting the evaluation booked took forever because I had to wait for Dr. Gray to first put in the referral for transplant and then get “into” Duke to just be considered medically and financially ready. I also realized that I should not come back to Colorado after the evaluation because I had gotten so sick. Traveling by plane and coming back up to living at a high elevation after being at sea level would make breathing arduous.

At this point, it had also come about that my DSA (donor-specific antibodies) antibody-mediated rejection had graduated into BOS (bronchiolitis obliterans syndrome) /CLAD (chronic lung allograft syndrome) chronic rejection. My doctor said that I had profound rejection aggressively progressing at a faster rate than they typically see.

One of the tests they added to my lab work is called a CD4 count which measures the amount of CD4 T-cells. It is basically an indicator of the immune system’s health, such as how suppressed my immune system is. My results came back at 880 which is high for someone who is on immunosuppressive medications. A result of 500 and below is within the standard range for someone like me, and 880 is too high. My immune system was working a little too well and they decided they needed to do something to attempt to stop the rejection from the inevitable plummet.

The medication called Campath is a one-time shot that supposedly works faster than photopheresis. It is a monoclonal antibody used to treat rejection that depletes the T cells and the B cells as well as innate immune system cells. The goal of this injection is to wipe out the immune system. Getting Campath took almost a week from when the order was placed to when the pharmacy approved and received it. After that, I was instructed to call the infusion center to set up a day and time for me to come. I needed to have the medication administered at the infusion center because I had to hang out for a bit after receiving it for observation in case of a reaction.

Later that week I had another clinic appointment with PFTS which were down to 21%. My blood levels showed that the Campath shot was already doing what it was supposed to do by dropping my white blood cells! We also heard from Duke and we were able to schedule my evaluation which would begin on December 2nd and would take 5 days.

The weeks leading up to when we would be leaving were obviously stressful because of how hard it was for me to do anything. Luckily my parents had come to stay with us in Colorado for Thanksgiving for about 10 days. It was very helpful having them around. My dad helped by cleaning things I was unable to get to for a long time and cleaning up the backyard from the summer. All of the old dead tomatoes, pumpkin plants, and leaves in the yard had piled up. My mom helped by doing the grocery shopping, making food, and helping me organize stuff. We were also the ones who volunteered to host Thanksgiving this year before all of this had happened, but since my parents were coming they took care of cleaning the house, cooking the turkey, the stuffing, and everyone else just had to bring one thing. A fun last-minute surprise was my cousin coming out to Colorado to join us!

One major issue I was facing while orchestrating my quick exit to Duke was getting the oxygen company to do what I needed them to do, it was insanely frustrating! All I have to say is,“ fuck you” Lincare in Colorado! Thank goodness for this angel of a human named Donna Lee from my pulmonary rehab class. She heard I was having issues acquiring a portable oxygen concentrator for just the flight from my oxygen company, and offered up her old one for me to borrow! At that point, she was already 7 weeks post-transplant! The other issue with them was coordinating to have an oxygen concentrator and tanks ready for the location where I was going to be staying for the first week in North Carolina.

The last few days before leaving are always a mad dash of getting things done. Unfortunately, we have one flight of stairs from the main floor to the second floor where the bedrooms are, which posed a dilemma in my ‘can’t really breathe’ situation. Luckily my parents and Chaz’s lungs work great and they all helped by taking things I packed into a pile downstairs. This pile was the one going into my car which was going to be driven by my sister Laima, two weeks after we left.

Chaz and I had to wake up fairly early Sunday morning, December 1st. I think we got up around 3:30 am, took an Uber, and got one of those transport wheelchairs to push me through the airport. Traveling while barely being able to breathe and using a pulse-rate oxygen concentrator that only goes up to 5 was difficult, to say the least. Pulse-rate means that it only puffs out oxygen as I inhale. It sucked for sure but we finally made it to North Carolina!