After I came home from the Emergency Room with my diagnosis of pneumonia, I still couldn’t breathe very well so I stopped eating solid food. Sunday I drank some orange juice and Vidya made me some fresh grape juice. While I was still panting Sunday night, by Monday my digestive system had emptied out and I had a little breathing space.
When I read the sheet that came with the antibiotics I had been prescribed, it caught my attention. It said caution should be used if you had a liver transplant, diabetes, or kidney problems. As I was hitting 3 out of 3, I decided to get a second opinion from my post liver transplant coordinator to make sure it was OK I could take it.
She signed off on the antibiotics but it came up in conversation that it had been diagnosed in the course of a Short of Breath episode.
As we knew my kidney failure was imminent, my nephrologist had been pushing me to make a decision as to what sort of dialysis I was going to choose. Hemodialysis means you are hooked up to a machine for 4 hours 3 times a week and I would have to go into town to do it. Peritoneal dialysis can be done at home but needs to be done for 20 minutes 4 times a day.
Both were very unattractive to me and I had been procrastinating choosing, but with the fluid building up it made it more pressing. At first the Lasix had controlled the fluid but it was no longer effective enough and I was all swollen up again. So I had chosen to do the peritoneal dialysis.
They stick a permanent catheter in your gut and though at the time we scheduled it, which we had done prior to the shortness of breath that developed on the weekend, we knew it would be a drain for the fluid that was already there and the thinking at the time was even though I didn’t need to dialysis yet, having the drain would be good.
Anyway, while talking to my coordinator I mentioned that Thursday I was going to get some relief because of the peritoneal catheter and she freaked out. She said it was forbidden for post liver transplant patients to do peritoneal dialysis because the chance for infection was too high and that it wouldn’t work anyway because there was too much adhesion (scarring).
Now this was an emotional body blow, because I had had a hard time getting to acceptance of the peritoneal dialysis and now that possibility was being yanked out from underneath my feet. I still haven’t fully recovered from that.
This is not a NIH standard but it is the standard UPMC, my transplant center, holds. This was news to my neprologist and the surgeon who was going to implant it when I brought it to their attention later as other centers do allow it.
I called my nephrologist (kidney doctor) and she said I should get a paricentisis (a procedure to take out fluid that has collected in the belly) but my primary physician would need to order it. She also made an appointment for me to come in Wednesday to see her. I called the primary and they said he would need to see me before he could order it so made an appointment for Tuesday.
By Tuesday I was unable to tolerate fruit juice even and manged to puke in his office, which was good because observing that he changed the antibiotic. He scheduled a paricentisis for Thursday.
Wednesday was the nephrologist and manged to puke there too. She said I was too far gone to wait the 6 weeks it would take for a fistula to be implanted into my arm and for it to be ready to use so I could use it for hemodialysis and ordered a subclavical catheter so we could start immediately. She scheduled the procedure to be done the next day, at the same time as the paricentisis.
Thursday was shaping up to be an eventful day, but even I was unsuspecting how eventful it would turn out to be.