Today my kidneys were unhappy. We can surmise this, as my creatine level was up to a whopping 1.4 per the morning’s labs. Last week I checked in at 1.2 (Monday) and 1.1 (Wednesday), with the latter being the tippy top end of “normal”. Anything above a 3.0 is bad, in my layperson’s terminology – bad as in you stop peeing, etc. So that’s just not cool. I like my organs, and I especially like my organs when they work. Pushing the fluids is about all I can do from my end, which is incredibly frustrating for someone who likes to tackle things and problem solve. But, as Daniele explained in my appointment this morning – my kidneys are unhappy because of the Tacrolimus.
Apparently Tacro is an awesome drug for the prevention of Graft vs Host disease. Unfortunately, it is total rubbish for the rest of the body, can cause dangerous complications and is generally unpleasant. Daniele assured me that once I’m off it completely after six months, I’ll be amazed at how much better I feel.
4-ish months to go.
There are other immuno-suppresive/post-transplant options if the Tacro continues to affect my kidneys. For now, my Team wants me to hold my Acyclovir (one of two anti-viral meds that I take. This helps prevent things like chicken pox, shingles, CMV infections or severe complications from Epstein-Barr Virus). We’ll recheck my labs on Thursday, and see where the numbers fall, and then put together another plan. For the record – I DO like the Acyclovir…having already had a close call with chicken pox, well, that’s just a road I would rather avoid.
Other stuff from today?
Well, my walk to the Clinical Center was nice – refreshing but not cold. The final climb into the building had my heart beating, lungs working, and as soon as I was through COVID security, I grabbed a chair to remove my extra sweatshirt and merino wool jacket. Yeah, I may have over done the layers, but that’s cool. Thankfully I remembered deodorant, and all was well.
My body is, well, hanging in there. Skin is dry, lips are dry, and I’m getting small mini-pimple like bumps along my jaw line. Daniele assured me this was normal post-transplant. It’s not acne, per se – just little teensy tiny bumps. Mom can’t see them, but I can feel them. I did notice that my salmon-pink-NIH mask felt more abrasive on my face this morning, so perhaps my skin is becoming more sensitive? Who knows…..I did just have a Stem Cell Transplant, so I’m blaming that.
Another issue – and this is about sex, so if you’re not cool reading this – skip ahead three paragraphs (sorry Mom & Dad).
Another issue – sex, specifically how uncomfortable and even painful it is. Yes, my body is super dry – chemo took care of that, and all the meds I currently take only add to that plight. But this transplant also sent my body into an early menopause and yes, hot flashes are a thing. Unfortunately, I can’t take estrogen because of my blood clotting disorders. Estrogen is important because it helps manage symptoms, including, um, personal lubrication and elasticity. Simply stated – I have none. No natural lubrication, and zero elasticity. This has made my time with Andy challenging – something that has been wonderful between the two of us, is suddenly very different and feels physically impossible on my end. From his perspective, I felt normal.
At one point last weekend, I was nearly in tears and asked him to stop. He was incredibly respectful, gentle, kind and understanding. I felt like my insides were being split in two. Afterwards, I cried. I felt sad, even guilty; we lay in bed together and talked. My body’s inability (at the moment) to have comfortable sex with my significant other was really hard – I felt not good enough, in some way that I was less of a woman because of this. If anything, I thought I would struggle more with being bald. Surprise!
In my head, I know that none of this is my fault. I understand that I AM good enough and my “being a woman” has nothing to do with my ability to have sex. And a robust sex life is so much more than vaginal intercourse, as Andy reminded me. But still, I don’t like this – this feeling, the situation, etc. I don’t want to be this way forever, and I’m sure that somewhere out there, other folks who have gone through transplant or chemo can relate. Daniele suggested dilators, or rather Vaginal Dilator Therapy. Simply stated, this is a way of gently stretching the vagina. I’ve placed an order and we’ll see how this works – only time will tell.
Congratulations if you made it this far –
And congratulations if you skipped ahead. This is a new subject for me to discuss, especially something this personal. And yet, it relates to my transplant, so it’s important. I want this blog to not only serve as a connection between me and my family/friends/loved ones etc, but I also want other transplant folks to find it helpful.
And I think that’s honestly all I’ve got. My return from the Clinical Center was much faster, as I was driving. Mom and I watched Top Chef and later Zoomed with Andy, Lucy and Dad. Somewhere in there I ate Mac & Cheese and enjoyed carrot cake. And pushed the fluids, continued to push the fluids. And pushed the fluids more. With that – goodnight!