Day 16 (since transplant) Day 3 at home

I am recuperating.  Not sick, but not fully well.  The rules require me to wear a mask for anyone not "family" and to always have somebody handy to drive me to the hospital.  Best rule: I must not do any cleaning myself.

I will next go to the BIDMC clinic next Tuesday--they liked what they saw at my first post-release check-up yesterday.

Yesterday, I was

• well hydrated with minerals in balance (IV fluids would have been very standard but I'm drinking 2 liters or more per day on my own)
• Had strong white counts (above "post transplant" and nearly "just below normal") in the range of ANC = 3000 and WBC = 4-something (but not 4.5
• No fevers so far
• Liver numbers still elevated (worth noting & worrying but not worth intervening)

They didn't like that my "innards" had initially resumed this unique blend of 

• kinda like heartburn, but not really
• kinda nausea, but not really
• a bit of loss of appetite
• mild gastro distress

Basically, it is a feeling that is like a slighly-blended/changed version of any of these problems I've had from "usual" problems in the past 52 years.

I am experiencing my gut lining going wonky--sloughing cells; losing hairs, delicate structures and local function; dying and restoring at different places at different times. So it feels kind of like any of the gut problems you or I have ever had, except this time, it is the gut itself, and not  the germs or acid or other stuff passing through that's the cause. 

Mostly, though the Dr's unhappiness was that because the RNs had been giving me "as needed" meds for my heartburn-nausea-unease-whatever, the meds never officially got recorded as a daily problem with a daily fix.

So now I'm on low dose Pepcid 2x daily, because "we don't want you having any symptoms that are too serious to be medicated away, and the only way to know that is to try to medicate them all away" Fair enough.  And a good thing: I originally thought that the burning pain when inhaling was lung trouble or trouble breathing*  Then I realized that my whole esophagus hurt and inhaling was just exacerbating my "greater heartburn" and better, that Maalox gave quick relief and Pepcid kept it away the next morning.

Also, I'm on Lactaid before eating dairy.  Apparently the cells in the lining of one's intestines that "do milk" are among the last to come back, which is a shame since cold foods (like milk-in-cereal) taste normal and are very soothing.

Also, my taste buds are clearly off.  Many foods--including some favorites--taste like a bad TV picture used to look (particularly when the kids had turned "tint" to Red or Green)

Happy note: Everyone at home is doing a great job of keeping both bathrooms sterile, too.  Small rituals plus hand washing go a long way.

* I am literally scheduled to have trouble breathing on Day 21 or later. Pencil it in for Monday.  A large share of post-transplant patients develop a pneumonitis at 3 weeks. The cause is unknonwn (when regular folks get it, it is usually viral) but they give antibiotics to prevent the inflammation from permitting real pnumonia to develop in me.