Very Messy Old/New Year

Who would have guessed?

This is a real story. We made mistakes. No apologies… we were trying to serve and protect our family. Doing the best we could with what we had. Our grandkids got COVID-19 around New Years. 4 year old did not get sick, 8 year old had symptoms for about 2 days. Daughter got symptoms. Laurie, my wife, had been babysitting, no symptoms. The dates here are approximate, I lost track.

They all tested positive. I got a test and tested negative.

In a few days, January 20, I woke in the middle of the night. Did not know where I was and got lost in my own bathroom. Managed to get to bed. Went to ER. Was admitted with a positive test with covid. Now my blood pressure would not stay up. I could not stand for more than a few seconds without collapsing to the floor.

After 4 days I was released and never had the usual covid symptoms, but my blood pressure would not stay up. A few days later back in the ER. Blood pressure so low I could not stand up. Terrible pNETS syndrome, fecal and urinary incontinence, mentally very confused. Adding more confusion, I also could not swallow properly (This was a symptom that I was already being treated for, unrelated to COVID or pNETs, we think, and still not resolved on Feb 19.)

carcinoid zebraWhat is going on? Has Plague 2020 morphed into Godzilla 2021? carcinoid zebra

So, the interesting thing about the COVID stuff above was that I never experienced the “normal” COVID symptoms except that my smell and taste were impacted severely.

Returned home on 27th still feeling weak, fatigued, I was reading the Sunday paper on the 29th and suddenly the Carcinoid bowel symptoms hit very hard, I was very confused, plus I could not stand up (literally collapsed). To the NETS experts, I did not change my diet except that I could not eat some things because of the COVID taste/smell thing. In fact, for several weeks, I ate very little. Everything tasted or smelled awful.

Off to the Emergency Room on January 31. Could not stand or walk reliably. Admitted to hospital that evening with very low blood pressure. I was confused and sometimes was not sure where I was or when it was. It was about then that we determined that I was taking three medicines that reduced my blood pressure. They were far too successful! For 1 or two years, my blood pressure had been quite high. The doctors had finally driven it low. We discontinued all but one of the weakest BP meds. This appears to work, allowing my blood pressure to rise to a more reasonable level.

We need to also factor in that the Sandostatin injections, specially when I miss an injection, and sometimes the NET disease itself can drive blood pressure up and down inexplicably. So some times we don’t know why the BP is what is.

For 2 days, I was in the regular hospital then , transferred for 10 days, I was in a rehabilitation hospital. Every day the physical therapist and the occupational therapist came to me and we did exercises while they watched carefully to see if I was steady on my feet, physically strong enough to do well on my own. ( By the way, since I am retired, my thought is that physical therapy and occupational therapy is pretty much the same thing.) Both therapists’ conclusion was that the problem was only the blood pressure, not core strength.

My blood pressure finally rose to “normal” range and I was no longer unsteady on my feet. So I was released and went home. For the last week and a half, I am trying to see my doctors and get to work on the physical problems. This morning my blood pressure was higher than anyone wants to see. I can see that this will be an ongoing story.

When there is more news, I will blog more.

Cy

6 thoughts on “Very Messy Old/New Year

  1. So sorry you are going through this hope that you and doctors will find an answer that allows you to have a normal life again . As always love and prayers, thinking of you

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