Welcome to the team, Tizzie! I am also a member here for my husband, who was first diagnosed with kidney disease in 1996. We've been on the Dialysis roller coaster for 18 months now, and he is finally stabilized. DH's kidneys suddenly started shutting down in the Fall of 2010, but he didn't want to tell me how bad it was getting.
I found out in February 2011, and it was a complete shock! I knew DH was feeling more and more fatigued, and basically crappy all over; but depression and extreme stress from his bad work situation (long story) seemed to account for it. I expected an ESRD diagnosis in a year or two, not the first time I went with him to the nephrologist!
First of all, there's a BIG difference in diet and liquid requirements and limits between those on Hemodialysis and those on Peritoneal Dialysis like my DH. I am EXTREMELY happy that he was able to qualify for PD, and that it's been successful for him. Not only does it mean DH does his dialysis at home, at night while he sleeps, but he is allowed far more liquid, as well as potassium, phosphorus, etc.
All that was new to me: "Po-tas-si-ummmm - WHAT?" After DH was diagnosed, as his catheter surgery approached, he began to eat more healthily, especially by eating more fruits and veggies. When DH checked in, they couldn't do anesthesia because his potassium was dangerously high. They did a twilight sleep and inserted a catheter in his neck and out his chest for emergency Hemodialysis.
So THAT's how we learned about potassium... and we're still learning about adjustments in his food and meds and other treatments to balance all the stuff they check during his monthly lab tests. There's a Dialysis Technician (nurse) who stays in close contact with DH, and with me. We can call or go to the Dialysis Center whenever we need help; plus that's where DH sees his nephrologist each month.
Tizzie, you're just beginning... While there's a lot to learn and do NOW, we're also in this for the long haul. I think that was the most frustrating aspect for DH: he thought once he got on Dialysis, he'd go back to "normal" and feel 100% again. It doesn't work like that! Plus, he gets frustrated by the fluctuations in his labs. In August, his results were perfect; but he has to understand, it'll always be a balancing act.
I think the best "lesson" we learned from DH's doctor and the Dialysis personnel is to NOT get tied up in all the minutia, and to NOT second-guess our decisions. I'd worry and fret every night about whether we chose the correct formula for his dialysis solution. There's three basic strengths, and they can be mixed a dozen ways; which depends on his stats for the previous night, and current day and evening.
Each month we'd bring in the daily logs recording his stats and the readings from the PD machine, and would ask: "Did we do this right? Should we have used red-green that night, or was green-green okay?" The lesson was, trust your judgment, and just do the best you can; what's most important is what happens OVER TIME. They've all been so encouraging and supportive - It was a great relief!
Best Wishes, Elizabeth ~
My son Scott's memorial: www.youtube.com/watch?v=AopgOKaOUwY
Co-Leader on LET'S TRY THIS AGAIN Team
"I'm not telling you it's going to be easy.
I'm telling you it's going to be worth it."
"Life isn't about how to survive the storm,
but how to dance in the rain."
| Pounds lost: 63.0