Happy Birthday to Me (Day 0)

Wednesday, May 29, 2024 – Day 0

Today was a lot of emotions. From a medical perspective, though, it was actually a much bigger day for Gordon than for me. A transplant can happen in two ways – peripheral stem cells or bone marrow harvest. There are pros and cons to each of these, but a bone marrow harvest has a lower rate of graft vs host disease for the recipient (me). However, a bone marrow harvest is much more difficult for the donor (Gordon) as they have to undergo anesthesia and have two giant needles placed in their pelvic bone. A peripheral stem cell donation is similar to donating blood in that a needle is placed in the arm and blood is removed, passed through a machine that collects blood forming cells, and returns the rest of the other stuff to the donor.

Ultimately, the team, and with Gordon’s willingness, decided to move forward with a bone marrow harvest.

Gordon’s day started pretty early at 6:30 am getting wheeled down to the OR. The harvest started around 8 and Gordon was in his room to recover by the afternoon. He donated 1.4L of bone marrow which is A LOT of marrow.

Because Gordon and I are ABO compatible (our blood types are both A+ – go figure) and our HLA proteins are 100% matched, there is very little manipulation that needs to be done with the marrow that they extracted. Ultimately, after adding in anticoagulants, heparin, and some other things, a 1.9L bag was transported up to my room around 2:30 PM.

It’s somewhat anticlimactic because the infusion itself is not really that exciting. It’s basically a big bag of blood that gets infused into a vein over the course of 4 hours. I do get pre-medicated with Tylenol and Zyrtec to help prevent reactions but since Gordon and I are compatible, there was a much lower chance that I’d have a reaction.

The only main hiccup that we had is that my central line in my neck wasn’t flowing fast enough and they don’t usually do cells on a pump so the entirety of this bag was infused via gravity. Because the flow wasn’t fast enough, they had to poke me again in my arm to make sure the cells were infused over the 4 hour time period as cell viability decreases the longer it sits in the bag.

Overall, I felt fine after the infusion, but the sheer amount of volume that was infused in me did make me look very swollen and puffy. For reference, an average adult female has a blood volume of about 4.5L so the fact that I got almost 2L extra definitely put me in fluid overload. I did have a little bit of a headache, my blood pressure went up, and I had a little tightness in my chest, but all of this tracks with having extra fluid and my kidneys were working extra hard to get rid of the excess fluid.

After the infusion, I walked over to Gordon’s room, where the nurses on the floor surprised me with a birthday song and cake which was so cute!

If anything, I think today was the day of all the emotions for all parties involved. For me, there’s a lot of guilt in this process. Our lives have essentially been on hold since the pandemic, and even more so when I got very ill in 2022. Gordon’s sacrifice wasn’t a benign one either – it’ll take him at least a month to fully recover and be able to go running again. To have placed my family’s life on pause for this long, to have them all come out here at my expense, is something that I think about a lot. I’m incredibly grateful, but I also wish none of this had to happen in the first place.

Thursday, May 30, 2024 – Day 1

Today was a good day for me. My hemoglobin this morning was 12.9, a number I’ve never seen before in my lifetime! I’m still very chubby and swollen looking, my hands are very warm and purple/red, and I have good energy. On the other hand, Gordon’s hemoglobin is in the mid-9s, he’s pale, his hands are cold, and he’s very fatigued. It’s like we’ve switched places.

Now that I’ve been transplanted, what happens next? There’s actually a lot of fear and anticipation for me, maybe because I know too much about this process instead of going into it without knowledge. Unfortunately for me, this is where things will start to get worse.

The busulfan/fludarabine that I got last week and the Campath that I got the week before have all started to get rid of “me” which is what we want. My lymphocyte count (T and B cells) are at 0. My absolute neutrophil count is also starting to trend down and should eventually hit close to 0 in the next week or so. However, this also means the side effects start to take effect in the next few weeks too.

I did start to get a rash on my face this morning, and I had an oral ulcer pop up on my tongue today too which made it painful to eat. The oral mucositis is supposed to get worse, and patients often need a pain pump and aren’t able to eat, but luckily I have a feeding tube in place in case things get really bad. There’s a whole host of other things that can happen in the next two weeks before my body decides to accept and engraft Gordon’s cells. It could range from diarrhea to skin rashes, so as my friend Dan joked “oh so like your normal life” but it can also be as bad as organ failure. So to say there is anxiety is bit of an understatement.

I’m also starting to get really stir crazy in the hospital. Even though I’ve been trying to go to the gym with recreation therapy or see the therapy dogs, I’ve been here since May 14th. While I go on a walk every day outside of my room, I haven’t been to the outside in over 2 weeks. Because my neutrophils are so low, I’m at a very high risk of infection right now so it’s best that I stay away from people and kind of keep to myself. This feeling of doing nothing but also being interrupted every 30 minutes by someone walking into your room is exhausting. I can’t wait to get out of here…

Gordon got discharged today though so that makes one of us! Even though he’s still incredibly tired, hospitals are not a place of rest. As I’m writing this, my mom texted me saying he’s snoring so I’ll take that as a good sign!