Dialysis - Stories and Questions

@lpw, here is the post you had in the Transplant List thread. I think it will be better answered here and get more exposure to members currently on or previously on dialysis, to get their input!

"My husband did dialysis for six weeks two years ago and now, his numbers indicate that he needs to have dialysis again. He is preparing to go on peritoneal dialysis and I plan to help him. I wonder how frequently peritonitis happens and what special precautions one should take to prevent this from happening?
What happens if you have to miss a night of treatment? Did you have any aftereffects from this dialysis like you did from the other? How long did it take for you to feel better? Thank you so much for any time you give to my queries."

When your husband had dialysis those years ago, what modality was it? Hemodialysis using a fistula or graft, or peritoneal using a catheter in the abdomen? Was it prior to a transplant and then discontinued after a successful procedure? Does he have a failed transplant that requires a possible second transplant?

Very cool to read you will be your husband's care partner. Make sure you attend all his training sessions, so you know exactly what he will be going through. I find that is critical. My husband attended some of my training sessions, but felt because he had done PD from 2011-2016 he didn't need to be trained. We found there were different techniques involved. His experience was he had used a cycler at night, where I do manual exchanges during the day. Your trainer will stress the aspect of keeping things clean to help eliminate contamination, including hands/exit site, equipment, supplies, area, etc.

Here is what Fresenius Kidney Care has to say about peritonitis and PD: https://www.freseniuskidneycare.com/treatment/peritoneal-dialysis/peritonitis#:~:text=Peritonitis%20most%20often%20starts%20when,common%20and%20can%20happen%20easily.

Missing a session on PD can have different effects for each patient. A lot depends on the prescription as set forth by your clinic. For me, my prescription is "light", and I skip a session maybe once a month. I know a lady who was told by her dr it was okay to skip 2 sessions a week.

As far as long before you feel better, it could be within a week of getting his blood cleaner with the dialysis. Remember, the PD is in addition to whatever function remains in his kidneys, not a replacement for the function. They are seeing that the higher eGFR is when dialysis is started, the better the outcome. I personally started at 14%, and have rebounded up to 16%.

Thank you for reading my lengthy post! Any further questions for me or any of us?
Ginger

Well, replying to my own post now. LOL

I did some in-depth research about the collagen based kidney disease I have, called Type III Collagenofibrotic Glomerulopathy. It is ultra-rare, and no research monies being used since there are so few patients with it. Type III Collagen, it turns out, is a pretty interesting creature, and can have the effect of producing fibrin within the peritoneal cavity. Voila! the answer to my being a "fibrin factory".

When I presented this evidence to my dialysis clinic, we all agreed that adding a second session every other day hours after the first session ["it's just one bag, dwell for an hour", but still it would add almost another 3 hours start to finish!] would not be fruitful. We did modify my heparin to 2cc per day, injected into the first bag. Oh, and I did indeed do that second session for 2 weeks, what a chore!

Glad I took the "bull by the horns" and advocated for myself, once again.
Ginger

Hello I was wondering how to get in contact with with questions about gfr numbers on kidneys.

@jessgarduno30 What questions do you have? What is your current eGFR?
Ginger

@jessgarduno30 What questions do you have? What is your current eGFR?
Ginger

@jessgarduno30 What questions do you have? What is your current eGFR?
Ginger

Ok' I give up this site isn't for me. :/ I can't seem to tell if I am doing this wrong because I can't seem to get any responses.

Hi @jessgarduno30, Looking back at both discussions you started along with your posts in those discussions and a few more, I think the problem you may be having keeping track is because the 2 discussions you started were pretty much on the same topic with slightly different titles. You can always see your previous posts by clicking on your member name and going to your profile and settings. You can also go there by clicking on the person icon at the top right of the Connect window. Here's the direct link to your profile and settings where you can find the 2 discussions you started and if you click Comments at the left it will show you all of your previous posts with then newest first - https://connect.mayoclinic.org/member/00-5c381ec25c300c3c357685/.

If you would like to have the two discussions merged together so that it's easier to see who has responded to each post, please let me know and I will request that a moderator merge the two discussions.

Hello' thanks for three reply. I started trying to contact one of the volunteers on her chat group. And I don't do chat groups or know how the whole thing worked. So I keep trying to get on contact with her. So when I started the first post I filled our the questions it asks to start one not knowing how it was going to be worded and it didn't think it made sense after it posted. Then I kept trying to talk to the one volunteer. Now unfortunately it hasn't been working well. I say what's going g on and she keeps asking what's my concern. And I keep saying it. So not sure these chats are meant for me to get help with. Agin I love all the support everyone gets form this and all the information that everyone has but I haven't been as lucky.