Everyone I saw receiving treatment looked to be at least 80...85. And there was a very distinct smell. Not awful, just not something I want to breathe in regularly. There was no privacy, and a constant din of beeps from the dialysis machines. All-in-all, one of the saddest places I've been.
And I just want to say that this is MY OPINION. I know that, for some people, the fact that some is there to take care of them and monitor them during dialysis is exactly what they're looking for, but I'm not.
I was meeting the education coordinator (I think her name is Ally) at the center. She gave me a quick (as in like....2 minutes) tour and then we went back to an office to talk.....I think she may have sensed my mild freakout. I was there for about an hour and a half, and I came out with a lot more confidence in the path forward, which was my sole goal.
I need to find a modality that is the least disruptive to my life. I raise a young child, and I work, and plan on continuing both when or if dialysis starts. Based off of what she told me, and my discussion with the transplant nephrologist at Mayo that I mentioned in the previous post, I think I'm leaning toward home PD (peritoneal dialysis). The advantages for me are:
- No fistula or graft
- I can dialyze overnight
- If I need to stop in the middle, I can, and resume later (like if I need to go to the bathroom, or if Izzy has a nightmare)
- I can sleep in my own bed
- The PD cath can be hidden
- There should be no remaining fluid in my abdomen after I'm done, which was one thing I was confused about
- I can dialyze with this method even if there's a power-outage by doing a manual exchange, which is essentially filling my belly with dialysate via gravity, letting it dwell for a set time, and then draining.
- I can have supplies delivered to my travel destination if necessary
- Fewer food/fluid restricts
All is not rosy, though, as no solution is awesome. The disadvantages are:
- There's a national shortage of dialysis solution that started in August. Hopefully the manufacturer will resolve their production issues by Christmas, but there's a wait list for now (Ally is working on getting me on that wait list now, just in case)
- No swimming
- NO BATHS! (This is the worst for me, especially at this time of the year, as it's one of the only things that warms me up once the chill sets in. Ally did mention that the surgeon could put an extension on the catheter and have it come out of a different location higher on my torso, but it's not frequently done)
- I'll have to do it every single day
- Storing the solution is going to require quite a bit of space. Each night uses 2 bags at 6 liters each, so that's 12 liters per day, plus whatever extra water weight I gain throughout the day.
Overall, the advantages far outweigh the disadvantages, so I think I've got a front-runner. The next step is to go to the St. Louis Park dialysis clinic, as they support home PD. Surprisingly, not all dialysis centers provide for all types of access...most seem to do strictly in-center hemo, but there are a few around the city that support home dialysis. Hopefully I can do that on Friday and Joacim can go with me, as I'll need his support as well.
I also need to find a local nephrologist to help me manage the dialysis. Ally is getting names together of doctors who woe with the St. Louis Park clinic, and I'm going to look them all up on Cigna to see if they're covered, and then see what hospitals they have privileges at. I want to make sure they have local access in case I ever need to be hospitalized for any reason.
Whew....a LOT of information in the last few days to review and mull over. But I feel SO much better right now than I did a week ago.
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