Day +34, Monday

Photo of the Day: having lunch with Mom after returning from the Outpatient Day Hospital. COVID-19 continues to keep the NIH in lockdown mode and only patients are allowed into the Clinical Center. As my caregiver, Mom would normally accompany me, but in 2020, I’m flying solo. I very much appreciated the white cheddar shelled Mac & Cheese that she made upon my return, that was the best.

I awoke before the 6:30 alarm to the sounds of heavy rain. At first, it sounded like the 12-cup coffee maker, but a quick peek out the window confirmed tropical downpour conditions. It was nice to snuggle in bed for a few more minutes, enjoying Andy’s warmth before starting our day.

Just after 8:30, Andy and I headed out, me getting dropped off at the Clinical Center, while Andy made the 7+ hour drive home to Asheville. It’s only 3-ish weeks until he’s back for the holidays. And we’ve done it before (the being apart), for longer periods of time, but I still miss him.

My time in the Outpatient Day Hospital was brief. Labs were drawn, after which I could finish taking my morning medications, specifically Tacrolimus. This is a very important anti-organ rejection drug and 1) needs to be taken precisely every 12 hours and 2) the levels need to be checked frequently to ensure appropriate dosage. Too much of the Tacrolimus, and I’m likely to get seizures and develop temblors; too little, and there’s a high potential for Graft vs Host Disease. It always reminds me of The 3 Bears, where Golidlocks selected Baby Bear’s porridge because it was neither too hot, nor too cold. It was juuuuust right.

Thankfully, my Team at the NIH has a much more precise way of measuring the correct dose.

My counts are gradually going up, I’m happy to report. My WBC was an inspiring 3.2, my Hemaglobin a whopping 9.1, and my Platelets rallied at 65. Even though my graft has been sluggish, it is happening! It just takes time.

I met with CRNP from my Transplant Team Danielle and overall, it was a great appointment. I found out that other Transplant folks struggle with food turning into a sawdust-like consistency in their mouths. And one girl, even went so far as to ONLY eat Kraft Mac & Cheese for her entire 100 Day post-transplant stay. My own Mac & Cheese lunch went down well, so I will not complain, not one bit. I also found out that I’m likely to start going through menopause, due to the chemo and drugs pumped into my systems. I reported no hot flashes (at this point), although now that I really think about it….maybe there have been?

Anyways, the normally-prescribed estrogen will not work in my case, due to my blood clotting disorders. Yes, there are two – Lupus Anticoagulant and Factor 10. There’s speculation that post-transplant, my clotting disorders may completely disappear, but we don’t know yet. And as estrogen can cause clots, well, that’s just not a road that anyone wants to go down. SO – I’ll just take things day by day. At this point, that’s all I can do.

Around noon, I was navigating my little Volvo through the maze of the Parking Garage (got turned around only once), and soon thereafter, returned to the apartment that Mom & I are living in for the next few months. It was cool avoiding the rain, by going from one garage to another. City living….what can I say?

Afternoon rainy, overlooking the courtyard

The remainder of the day was low key. I read and napped (not in that order), chatted with Dad and Andy, and returned to the Clinical Center to pick up a prescription. Mom made a Trader Joe’s stir fry for dinner and we figured out a few things that the apartment needs. Thankfully, Amazon was able to help with that one. I’m just looking forward utilizing the top shelf in the kitchen cabinets – our stepping stool will hopefully do the trick. Yes, I check-in at a whopping 5’4 in boots; but my go-go gadget arms just can’t reach the high stuff. And I don’t want to give Mom a heart attack by crawling on the counters…..so this seemed the most reasonable option.

I return to the Clinical Center on Thursday, so I’m going to take the opportunity to enjoy the next few days with Mom as much as I can. And there may even be a Christmas Tree in our future, and that makes me happy. To be continued!

Smiling and chatting with Andy

  1. I’m so glad your mom I there and Andy is within a days drive. Keep on keeping on, Marit. You are one tough cookie and inspire me every time I read your thoughts
    Hugs ❣️

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  2. How good it must feel to write posts with less drama than the ones soon after the transplant. Your day sounds pretty calm and comfortable, a nice treat!

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  3. 3 weeks till Andy! It’s a good thing you two can get together frequently. And to have Mom with you is wonderful. I would love to be with you, butCDC advises against travel, so we do FaceTime which is better than nothing.
    I am inspired by your attitude. You are fantastic

    ❤️Dad

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