u/thebirdwithoutwings

Incredibly frustrated because the transplant team I'd prefer want me to lose 40-50lbs to meet their BMI requirements for going on the transplant list, but they admitted they dont take into account the size/weight of my diseased kidneys inflating my BMI UNLESS I specifically ask my neph to call them and beg for them to take it into account and reconsider.

My health is too poorly to lose that much weight from traditional diet and exercise means. Its all incredibly frustrating and I want to scream. Like. My kidneys are 1ft tip to tip each. They are covered in cysts, and likely weigh quite a bit. Why must it be so difficult for them to take that into consideration.

Officially have reached out to the transplant team to start the process of getting on the transplant list. Pushed to see my neph sooner so i can talk my options for future dialysis.

Im. Weirdly at peace? I had my grief over this all a long time ago when I was diagnosed 10 years ago as a teenager. I think my friends and family are more worried than I am.

Im pretty content and confident with the team at Wash U St.Louis, and my neph with them. They've been so lovely compared to my more local neph.

Wish me luck on my imminent journey, folks!

My GFR has been declining pretty fast (at least imo, it dropped from 26 to 21 in about a month and a half) and its just. Making me nervous for the near future. I see my kidney doc next month, and I fear we'll have to have The Talk about my next steps. Im just super intimidated by it all, I just turned 25 and it feels so overwhelming to be facing something like impending talks about dialysis and transplants. Not to mention my doctor says if my creatinine doesnt look better by next week, he doesnt want me to start tolvaptan (which sucks because then i'll have a bag of VERY EXPENSIVE medicine that i cannot take and wouldnt know what to do with.)

I'm just kinda frustrated with how my health is beginning to tank. I wake up fine but by evening i can barely walk. I also get a lot more muscle cramps and my legs are starting to swell. Its honestly just all got me freaked out and overwhelmed. Im just posting to vent a little, since I dont have anyone in my life I can share this all to who would understand on a personal level.

What's the lower limit on going on Tolvaptan? Theyve taken so long getting me on it, that my GFR has dropped from 26 (in late may) to 21 (yesterday) and I fear I'm now out of the running for being able to go on tolvaptan. Waiting on that call saying "Sorry all your form filling has been for naught" ;;