Kidney
What are some things you wish providers had told you about your dialysis choices?
July 27, 2023
in Kidney
As a dialysis patient I have been working on trying to educate folks on modality education, I am looking to see for those kidney patients who have been on dialysis or want to know about the different modalities, Is there anything that your care team/provider did to give you the knowledge, and if not what do you wish they would have given you?
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I was lucky (I am going with the term lucky) enough to avoid dialysis, so I don't have any insight here, but I am certain others do. @Aklowak maybe you have something to share?
I was on both hemo (in-center) and PD (in-home) - my dialysis was an emergency start so I had no choice in modality and I have zero education on modality when it started as I did not have kidney disease rather I had a major bleed that ended my kidney's job early. after 6 months and when stable I was approved for surgery for a PD catheter and then 4 months after surgery started PD at home.
I felt I was well educated on the positives of PD at home over the in-center hemo. but I really wish I had more info on the amount of work it is to completely manage your own treatment- organizing shipments, transferring supplies all over my home, and the fact my bedroom became a small hospital (sex life was murdered by this) I guess I would sum it up as needing information on the small-but important non-medical details like the lifestyle and the physical demands of the treatments.
Yeah that was my issue with PD. The training was quick and I didnt feel like I was truly given a chance to succeed. My sex life was gone too. It still is actually. Kidney disease is the pits.
I did both in-clinic hemo and at-home peritoneal. I, too, had a crash start to dialysis and the hospital I was admitted to only provided a temporary permacath for hemodialysis. I felt incredibly confused, at the time of starting dialysis, on what my options for treatment were. I wish that dialysis was talked about more throughout kidney disease journeys so that if dialysis were to become a need, people feel they have somewhat of an understanding rather than feeling blindsided. I also felt like my training for PD was not what I desired it to be. I mainly learned how to maintain a sterile environment but there was no guidance on the schedule and no insight on just how much goes into doing your own treatments and working that around all your regular day to day responsibilities. Another thing, DRAIN PAIN. I feel that is something that people have summed up to be "expected" but truthfully, I think that is a sign that something is not going the way it is supposed to with our treatments and maybe the prescription or settings of the machine need to be changed. However, there is very little education on this and again, seems to be something that is dismissed as normal.
The emotional impact.
I live in a small town and there are only two Dialysis companies in town. My Nephrologist was on the board of one, so I didn’t really have a choice in Dialysis centers. I had decided to go the HD route, so I had fistula surgery done to get a usable vein and was able to exercise my arm enough to strengthen the vein before I had to begin dialysis. ( my GFR hovered around 15% while I got the fistula ready ). What a horrible mistake that was. I wish they would have described HD as the last option to choose. I was so blessed to get a transplant after only being on HD for about six month.
Jay said it perfectly - the emotional impact.
My children had to do 6 days a week hemodialysis in a hospital outpatient center. Their specific disease required hemo dialysis and since they were young, it was to be done at the children's hospital center. However, I have a friend with the same disease who lives with my family and he is an adult. He is currently having home hemodialysis 4 days a week. He prefers home hemo as it is in a more comfortable convenient environment where he doesn't have to deal with as many issues of anxiety during sessions.