journal 19 June 2nd

Date: Thu, Jun 17, 2021 at 3:19 PM
Subject: journal 19 June 2nd

I wrote this back on the 2nd but for some reason did not send it out then. I’ll leave the next chapter for another message rather than make this one book length.

TL:DR Stayed in hospital for second dose of trial drug and then went home with Dave exhausted and with a catheter, but otherwise doing well.

Turns out I sent out the last message at the climax. The following morning (Saturday) there was one more cycle with much milder chills, fever, and sweats. And that was it. Except for the exhaustion. We spent the day mostly sleeping and waiting for the other shoe to drop. It did not. Sunday more sleeping. They stopped the antibiotic. Now down to the old Acyclovir anti-viral and the new allopurinol to protect the kidneys from their overload of work.

They said we could go home Monday and that sounded great at first. Then we got to thinking about the logistics. No shuttle due to holiday. Well, we could get a friend to drive us or get an Uber. That’s okay. But then we would be expected at the clinic at 6:30 AM on Tuesday for 6 hours of blood tests, dressing change, provider consult, 2nd dose infusion, and observation for reactions. That does not appeal at all. Dave did manage to do 7 laps of the halls today, starting with 1 at midnight and another 2 every several hours, but had to push himself due to energy levels being so low. Anemia doesn’t help. So we shall see.

The good news is that numbers that need to go up are going up, and the numbers that need to go down are going down, and vitals are already stabilised. BP around 100/60 to 110/65. HR around 50-60. Temperature around 98. Oxygen around 94-97. All good.

Me, I have been amazed at how much and how deeply I have been sleeping. Admittedly I wasn’t getting any to speak of for a few days there but I felt fine then. Once being up was no longer needed, it was catch up time and boy have I been catching up and catching up. I’m told that it is hard on the adrenals and they take a long time to recover, so if mine had not yet recovered from the first go around, they would have been quicker to exhaust.

It is now Sunday evening and despite snoozing and or sleeping most of the day, I am going back to bed yet again. We shall see what tomorrow brings.

Monday, Memorial day:
Andy the nurse practitioner came early. Dave started to explain that he didn’t feel ready to go home yet. “Okay," said Andy. Dave explains that the 6 hours of sitting on Tuesday would be too much, considering that he was still finding an hour up for a meal about all he could handle. “Okay,” said Andy. Dave’s about to press his case, but I pointed out to him that Andy had already agreed.

Andy said he wanted to give him a diuretic to take off some of the Prednisone water retention, as both the weight and the steroid can contribute to fatigue. Also check how much is not being voided. Also check how his BP and O2 are affected by exercise. So no discharge but instead another day of rest turned into a very busy day and he ended up even more exhausted than before. O2 and BP tests didn’t show any problems that I heard about. But the diuretic they gave him was pumping out fluids faster than he could void them, with a whopping near 500cc not being voided. Andy is concerned about that and considering options. At least he lost a few pounds in the process. At the max, Dave had more than 8Kg of fluid retained.

Decided that trips to the toilet or even using the urinal in bed every 10 – 15 minutes was not a good idea, especially given the level of fatigue and sleep deprivation, so it was determined to "try” (not an easy thing to abort) a foley catheter. It, unfortunately, involved some insertion trauma and hence bleeding, but it did make a huge difference in the ability to sleep. He was given a bag of platelets (due to low counts plus the bleeding) and we felt glad that we had not gone home.

Tuesday was another bag of platelets, the second dose of prodrug at 4PM, followed by a second diuretic, and a bag of red blood cells – if I haven’t lost track of it all. I was sure today was Thursday but it is only Wednesday so I have indeed lost track of the passage of time.
He is still experiencing the cycle of chills (without shivers) fever and sweats but so mild that we would not have noticed the pattern if it hadn’t been for those severe cycles. Several of the meds have been stopped leaving the original acyclovir anti virus, plus flomax to help with voiding, and the synthetic thyroid which they had started to taper him off of but then went back to the previous dose thinking that the tapering was contributing to the fatigue and simply adding one more variable to juggle.

The Picc Line dressing area has, as feared, itching red raised irritation so they are trying Benadryl for that.
Tuesday night he was out of breath just standing up from the chair, making us nervous about going home Wednesday. The foley will probably be used for a few more days to minimize the risk of re-traumatizing during removal and to allow for more undisturbed sleep. No blood thinners until platelets stabilise at 50 and there is no bleeding. They are putting together the discharge papers for today – Wednesday, 13 days after admittance.

Social Worker came by and decided that our plan to take the shuttle to SCCA and then another shuttle home was for the birds and ordered a cab for us. We had a final shower where it is easier in case it proved too taxing at home.

They brought in a leg bag for the catheter which is more discreet but due to its limited capacity and need to deal with it every few hours we decided it was more trouble than it was worth. It also required daily cleaning with either vinegar or chlorine. Switching back and forth seemed to be asking for trouble with the possibility of contamination. or even breakage of connections. So I asked how to clean the larger bag – not needed! For the life of me I can’t figure out why one bag would need daily cleaning and the other none, but it sure made the smaller bag less appealing.

I went to get the prescriptions at the pharmacy but was only able to get the flow max. Benadryl is over the counter, not covered by insurance so they don’t deal with it. Acyclovir and the synthetic thyroid had not been prescribed – I guess because he was taking them before arrival and, yes, we still had some in stock.

So we got out of there at 7PM and took the cab home and Dave went straight to bed and enjoyed an almost uninterrupted night’s sleep (except for one bathroom trip).


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