Day +140, Tuesday

Photo of the Day: This could have been taken at my doctor’s office in the morning, at the infusion center over lunch, or at Walgreens later in the afternoon. Similar floor, same boots, same me. For the record, it was Walgreens.

Today was another up and down day, and by the end – walking through the door at 4:30-ish pm – I was just done, finito. So I did something relaxing and baked cupcakes (yellow with chocolate frosting, in case you’re wondering). And then I made pasta with roasted garlic and tomatoes for dinner.

Through some festivals miracle, I was actually on time for my appointment (technically arriving 9:02 am). I call that a win. Another win was the NIH responding ASAP with CMV protocols and recommendations for me & Dr. W (based on what my lab results indicated as well as my physical symptoms). Dr. W was very thorough and kind, involving me in all the decision-making. I really appreciated that input.

In the end, I’ve started Valganciclovir, an anti-viral CMV prophylaxis used commonly for Stem Cell Transplant patients when lab results indicate CMV activity higher than a certain level. This was a big one for me; in college during my sophomore year, I nearly died from a combined bone marrow failure/CMV infection. Looking back, my GATA2 Deficiency was likely the culprit, but I remained very ill for a long time. When I first met Dr. Hickstein, my GATA2 Stem Cell Transplant doctor in 2018, he reviewed my files from that 2001 incident, whistled and commented, “you dodged a bullet with this one.”

As you can imagine, CMV is something that I both fear and respect; given the opportunity, I will do my best to stay healthy and prevent infection. And thankfully, all my doctors agree.

My Tacrolimus number usually takes a few days to return, but with today’s Creatinine at a record-setting 1.6, and knowing there’s a direct correlation between Tacro level and Creatinine (meaning one is high and the other is typically high), Dr. W asked me to hold my morning Tacro dose. I gladly obliged. He also asked if I wanted IV fluids, to which I replied, “yes please!” We worked out a plan to drop my dose from 3mg per day, down to 2mg per day (1 mg spaced 12 hours apart).

I want my Kidneys to be OK. I want my liver to be OK. I want ALL my organs to be OK – my NIH Team was visibly anxious when my Creatinine level was at 1.4 last December, so I know that 1.6 is a big deal. A very big deal.

I return for additional labs on Friday and will confer with Dr. W on my results. We agreed that I would stick around, on the off chance that I needed additional fluids. I plan to bring a book.

And finally, many of the side effects – GI distress, super dry skin, edema (especially in my lymphedema leg), etc – can be the result of what my body is going through. The GI issues – looser stools – that had both the NIH and Dr. W concerned, both for Graft vs Host Disease and/or CMV colitis. He wasn’t ready to rule out something a tad more simple, like my gut under attack from a C. difficile infection. And not that C difficile isn’t “simple” – but given the other alternatives – who knows? While I’m not currently on a course of antibiotics, I do use a prophylactic antibiotic after intercourse, due to frequent post-coital Urinary Tract Infections. So in addition to extra fluids, I was also given a few bags, a sample collection kit, and a “hat” to gather said samples. And no, you don’t want to know where it’s currently being stored.

Exactly. During my 1Liter saline infusion – my favorite part was the heated chair.

Once I was finished at Dr W’s office, it was a matter of tracking down my new prescription. My local Walgreens did not have any Valganciclovir in stock, but I found a pharmacy 30 miles to the south, on the southern side of Hendersonville, that did. They were lovely, and told me it would be ready in 2 hours for pick-up. And, the tech also happily commented, you’ll be charged only $13.00. I thanked her and found that last bit curious – until I saw the actual retail price on the label: $8276.79.

At first I didn’t even catch the full amount, missing that 4th digit ahead of the decimal. What can I say, except that I’m grateful for my health insurance. But it also is both saddening & angering that this is not a Basic, Universal Right for All. I feel enormously privileged to have the insurance that I do, but I wish something like life-saving medicine & treatment were not cost prohibitive. I wish that health care was not a for-profit industry; there is just something both tragic and wrong about that.

Anyway, with 90 minutes to wait, I grabbed lunch from a local favorite Thai spot – soup (I’ve had it before and did fine with it), and ate while parked in my car overlooking the French Broad River. I also made use of my lack of plate.

Never thought I would EVER use a “hat” for this purpose. Obviously, this was before my sample was collected. Ew.
My view – overcast with downpours at times. I loved watching the river and listening to the rain.

Then it was a quick pick-up at Walgreens, a stop at the grocery store for supplies and home. I was beat – drained and a bit emotional. So I did something that almost always makes me happy and eases my mind – I baked. Today it was cupcakes, a classic and favorite. I made extras for our local pool league team for Andy to deliver as didn’t play. Then a quick dinner with Andy, and I capped my night off by enjoying old episodes of Outlander and eating 2 cupcakes. They were delicious, GI system be damned.

Emotionally it has been a tough few days. Right now, I don’t really feel I have the time or energy to process all that is happening with my body; rather, I feel in a survival mode, if you may. And no, not like “survival” as in my life is on the line – not by any means. But as I’m still waiting for results, trying to figure out if this new course of action works, and hoping that my body feels better with the changes we’ve implemented – I sort of feel like I’m just rolling up my sleeves and trying to make my way through this murky unknown, one step at a time. Yes, that fear and grief is there, without a doubt. But I also need to focus on my resilience and strength – I’ve proven that I can do hard things in the past and I know I can do them again. And I need to remember to practice self-compassion, and be grateful throughout this process.

This is one more step in my journey.

Rainy day windshield.

  1. You will get through this as you have repeatedly! And I hope St. Patrick’s Day brings a bit of sunshine and maybe a rainbow.

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  2. You are strong and I’m confident that you will surmount these complications. I wish you didn’t have to suffer with these painful issues. Thankfully, cupcakes are a useful distraction. Do they go well with tea?
    Keep on keeping on!
    ❤️Dad

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