Dialysis - Stories and Questions

From Mayo Clinic's website, here is information on hemodialysis, which uses our blood to clean the wastes out of our bodies that our failing kidneys cannot do: https://www.mayoclinic.org/tests-procedures/hemodialysis/about/pac-20384824

The other type of dialysis is peritoneal dialysis, where a catheter is surgically inserted into our abdomen, and the peritoneal cavity is used to transfer toxins out: https://www.mayoclinic.org/tests-procedures/peritoneal-dialysis/about/pac-20384725

And here is my story: I have been on peritoneal dialysis since September 2022, and do it manually, without the use of a machine to fill and drain fluids. I live about 40 miles from the closest dialysis clinic if I had to choose hemodialysis. I personally find the peritoneal dialysis to be easier on my body overall, and yes, it is done 7 days a week. "Like having a part time job" as a friend tells me. The reason for my kidney disease is a rare autoimmune condition. I am also a blood cancer patient, and for this reason I cannot be considered for a transplant.

Has it been easy to get in to this routine? I won't lie and tell you, "yes, piece of cake". But that said, it is not a death sentence. Yes, i had to make some accommodations, but it is a challenge I accepted. As a home dialysis patient, I make decisions daily on when my session will be, if I need to change the strength of my dialysate solution, add heparin, etc., all while handling all the fluids and supplies myself, hooking up to the unit myself and having total authority on doing it all. My PD nurse is but a phone call away if I need her. For me, having my blood cleaned everyday means my energy stays more even, and I have more flexibility with my fluid intake [always a major concern for us kidney patients, right!?] Diet is still a major concern, and good protein is critical.

Please feel free to ask me any questions, or to relate your own experience as a fellow patient or family member or spouse of a dialysis patient.
Ginger

Good morning, Ginger, et al: here’s an update on our experience with my husband’s dialysis journey. Currently, he is receiving dialysis at a Wisconsin DaVita center. He will have his stomach port placed on March 1. We have a small, remote desert second home in Arizona, which my husband dearly loves and he’s anxious to return there. I had heard that it was difficult to get supplies and we are going to have to have them sent to two places so I thought I better get that organized. I called DaVita but no, that information requires a call to the supplier. OK – well I’m glad I did because while I thought we would be able to leave in April it now appears that if everything goes perfectly, mid May is the earliest we can leave . I wasn’t aware that there would be two weeks of flushes required and I also learned that we will have to get a special certificate to take the machine on the airplane in the cabin. Whereas, I was under the impression that this machine will be 25 pounds, it is actually 35 pounds with an additional 10 pounds for the case , I have severe rotator cuff issues so I know I won’t be able to lift this myself. I am disappointed that DaVita didn’t explain any of this to us . All of this to say that there are a lot of moving parts to establishing home dialysis and you have to stay flexible. Vicki

@helpkathy Welcome to Mayo Clinic Connect. It must be frustrating and heartbreaking for your sister to get this kind of news. Being on dialysis is a treatment for kidney disease, but not a cure.

There are several factors that can play into being eligible to receive a kidney transplant. Age is not normally one of them.
-Does your sister have other underlying health issues? Active cancer of any type, or cancer-free for less than 5 years? In my case, I cannot be transplanted due to being an active blood cancer patient. That will never go away, so there is no chance for me to get a transplant.
-Has your sister looked at the criteria for the Yale transplant center? I went to their website but could not track down any information. Sometimes it is as simple as carrying too much weight right now, and needing to lose some pounds.
-Has she reached out to the transplant team itself to question their statement of her not being eligible?
-Not knowing is wearing on both of you. If she cannot get satisfactory answers, she can go to principles of the transplant center, and ask for reasons.
-She can check with her insurance to find out about getting a second opinion.

I would really be interested to know what she finds out. Will you come back and tell me, please?
Ginger

@ldrlaw Checking in with you to see how things are going on your husband's dialysis journey.

How are you and he doing now?
Ginger

Dear Ginger -
My husband's DaVita dialysis trainer was great although we've had difficulty with DaVita's system for sharing medical information. I definitely feel that the home peritoneal dialysis was the way to go for us and glad that I kept asking questions. Recently, however, he's had a major, emergency cardiac event and at a minimum will need another stent (they put in two more) and a pacemaker. I was an elderlaw attorney and was the guardian/attorney for many people during my career; I usually know how to get through the system and what questions to ask. This go round, I had a terrible time. Initially, he went in with shortness of breath and an impending feeling of gloom; once in ER, he started to have chest pains. Even though nitrogylcerin relieved his symptoms twice, all of his tests, troponin level, etc. came back normal and they were talking about sending him home. I've seen this before where people's tests are okay only to have a heart attack shortly after. I felt they needed to do a catheterization. I asked to talk to the cardiologist and they said he didn't do that, he was at home, etc. I said I didn't care and if he wasn't available, I needed to speak with the hospital administrator. They did the catheterization and found 4 blockages...one so bad they might decide to leave it alone. The moral of the story is to tell the staff you're an attorney (whether you are or not) and that you're very, very unhappy with the way things are going. It doesn't matter if you're at attorney or not, they won't ask you for your bar card or some boring legal question. I'm kidding but dropping the phrase "lawsuit" is good too. It's obnoxious - but it works - and it's also obnoxious that you have to go to these lengths to get needed care.

Even with my background, I didn't realize how difficult to get him transferred to the best local heart hospital (St. Luke's in Milwaukee). Apparently there is an agreement between the two hospitals that if the proposed sending hospital CAN do the needed procedure, the proposed receiving hospital won't admit him. Of course that doesn't mean the current hospital will do it as well. If he goes directly into St. Luke's, that's a different matter. Our 911 folks won't go that far so now he's home and we're trying to get him linked up with a St. Luke's cardiologist. All in all - it's been pretty much of a nightmare but the dialysis is going well! A long response but maybe someone else will face the same situation. Thank you so much for asking - it means a lot to me to have this support. Vicki

@ldrlaw Oh, Vicki, what a time you both have had! The added stress on both of you is simply not welcome, is it?! I sincerely hope that you are able to get established to get in to the medical facility you want, and get the procedures done as you would like. Having to be our own advocates, or advocate for our loved ones, can be exhausting/frustrating/saddening all at the same time. I have found that so many in the medical community do not like when we have to be vociferous and push our needs.

I am glad to hear the dialysis is going well, though! A bright spot in all of this, right? Please keep me in the loop of information, and I am glad to be of some support.
Ginger

According to my peritoneal dialysis clinic, I am a "fibrin factory" because I get chunks of it in my catheter drain tube almost everyday. I use heparin everyday, 1.5 to 2cc. They are considering having me add a second session of dwell-and-drain each day, to head off additional fibrin build-up The second session would be way shorter, only an hour. Has anyone else done this, or had this issue/concern?

My underlying kidney disease is due to an ultrarare autoimmune condition, that is collagen based. It is my thought that the fibrin amount I produce may be a result of this disease.

Has anyone else had this problem? What did you do?
Ginger

Thank you for your words. I am going to check with her today.

@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