Day 132: Heigh-ho, heigh-ho, it’s off to work we go!

Day +132. Sitting in the clinic getting another two units of RBCs. Weekly transfusions have been the name of the game as of late, as are weekly Neupogen shots. The course of treatment so far has remained the same. At my weekly appointments, I play a mean waiting game to get shots and blood. But by now I’m an expert player, knowing to bring my laptop to keep me occupied. We’re currently in the process of identifying and confirming a second donor, another 10/10 HLA-type match. In the event that we’re unable to confirm them, we have a few 9/10 matches who are ready to go. This wouldn’t be the worst case scenario, but it definitely isn’t the most ideal. For now, more waiting.

Apologies for the spare postings. I’ve found that the days blend together and smush into weeks that overlap and compound into months that pass all too quickly. I would be lying if I said I was functioning at 70%. I’d be lying if I said I was even at 50%. I can confidently say I’m running at a solid 35%. But, I suppose that’s to be expected considering I have about less than half the amount of hemoglobin in my body than normal. And so it goes.

The latest piece of news is, as of last week, I’ve started back at work full time!

It’s been super exciting to jump right back into the project I was working on before leaving for the transplant back in February. We’re in the throws of wrapping up a paper and I’m stoked to finally get our work out there.

It has been a bit of a struggle to wake up and be fully ready to go in the mornings, but thankfully caffeine is an amazing stimulant and helps so much with getting my brain up to speed. I have been needing more down time after work though, and I’ve needed to go to sleep earlier. But overall, I’ve really enjoyed getting back to work and reestablishing some sense of normalcy again.

This week, I’m headed out to the Bean (Boston, if you’re unfamiliar with the lingo) to visit some friends and to show Ricky around my old stomping grounds. I’m super excited to be back in the city where I found myself and to see friends I’ve missed dearly. More updates to come from the trip!


Day 114: #lovewins

Day +114. A lot has happened in the past two weeks! For starters, the SCOTUS finally legalized same-sex marriage for the entire country. But of course, it wasn’t made official until Beyonce said so.

There were tons of celebrations here in SF and around the country as the 5 to 4 vote came just in time for Pride weekend. I, of course, couldn’t miss out on the festivities and celebrated with a few friends. History was made on June 26th, 2015.

I’ve had the fortunate opportunity to get out and take advantage of the city I love, making a point to walk to do something each day. Recently, I’ve visited the Conservatory of Flowers and the Asian Art Museum — both landmarks of SF that were on my list of things to do.

I also saw the much anticipated Inside Out. If there’s any movie I’d recommend going to see this summer, it’s this movie! Forget about Jurassic World (which, IMHO was a misogynist letdown), Inside Out is legit a great movie. It’s a really cute take on emotions and memory and a simplistic breakdown of a few core psychological theories. Check out the trailer:

So, I’ve been trying to keep myself busy and staying active filling my time with activities. I’m expecting to go back to work in the next two weeks, provided things remain stable for me.

Stable. What does that look like these days? Well to be honest, it’s a picture of constant fatigue and minor body aches (from all the walking I’ve been doing — a good kind of sore). Some days my brain is foggier than Karl and other days I’m as sharp as cheddar! I’ve learned how to solve the Rubik’s cube! I’m still going in weekly for appointments where my counts are continuing to drop and we still treat with Neupogen and blood transfusions.

I’ve run into an frustrating conundrum. Transfusional iron overload has now been tacked on to the list of growing issues with my body. What is transfusional iron overload you ask? Well, let me explain.

Every unit of blood has roughly 250-300mg of iron. When a patient with a rare anemic condition, like myself, gets many units of blood transfused in their body, they get all the excess iron that comes with it. Normally, your body clears out ~1mg of iron everyday through your bowel movements. This slow clearance compounded with pumping in iron from blood transfusions causes transfusional iron overload, which is what I’m dealing with now. There is no efficient way to clear iron from your body so we’re in an interesting position. There are a few drugs on the market that have been used for iron clearance, but there are a lot of issues and side effects associated with them (e.g. ExJade which is #2 on the list of drugs that can cause death). We’re proceeding with caution moving forward being extra conservative with how often I get blood, but the reality is my body isn’t making any RBCs so my need for transfusions is high.

In other news, the official “go” has been given to secure a new bone marrow donor. If nothing changes by August, i.e. my counts don’t stabilize, then we’re going to go forward with the second transplant.

We really only have two options here:
1) continue the current course of treatment, getting transfusions and Neupogen as needed while still be tired and existing subpar
2) try the second transplant and hope for a full recovery

I’ll try my chances with door #2.

And with that, I leave you with Justice Kennedy’s closing comments on the Obergefell v. Hodges case.