Help, with home hemo

[nh9man]

I am hoping someone can help me, or at least give me information. I am new to the forum. I had been doing PD for about 18 months. I decided that I wanted to change to home hemodialysis as I feel the PD was really affecting my quality of life (not to mention the time commitment). I have just begun in-center to build-up the fistula and once that is completed they will begin the training for my home therapy. (probably a month or two).

When I initially mentioned that I wanted to do the home hemo, but I wanted to do it alone without a caregiver (As I was told this is becoming more common). Fresenius nurses initially told me that I could do that and there would be no problem doing it. But after I had the fistula placed and was waiting for it to heal they said that I must have a care partner.

This is where my dilemma comes into play. I am a relatively young person (39) and I have no doubt that if I am properly trained I will have no problems. I do live with my 60-year-old mom and initially told them that she was going to be my care partner. However, upon reflection, this is not a very good option as she works full time, and more importantly I feel it isn't appropriate to have her have to do this for me. additionally, I feel like the nurses are deliberately misleading me about the need for a caregiver. As more than a few people at the dialysis center tell me there are others who self treat. I guess I am just looking for advice from others that may know something and could give me advice...

Any help would be appreciated...

[Jayhawker]

What does your nephrologist say? Solo home hemodialysis has to be prescribed by a nephrologist, I think. I’ve already talked with my nephrologist to determine if he does prescribe solo home hemodialysis. Mine is definitely prescribing solo home hemodialysis for some of his patients and is open to this option for me. (I’ve been in renal failure since January of 2017 but am not yet on dialysis.) While I plan to start with PD dialysis, I may find that it isn’t working or will only work for a few years. In either case, my second preference would be solo home hemodialysis.

But I would start by talking about the option of solo HD with your nephrologist.

Jayhawker

[htpi1543 in reply to Jayhawker]

Hi Jay

I am 75 and in the same situation as you are. GFR 19, creatinine 3.09, protein spillage 3800. Wondering when will I go on Dialysis. Started to feel down. Some days good, other days down. I am retired so I can rest when I want. Wife and I cook and and do other chores. 80% on vegan diet. Lost weight( 20 lbs)

Can you please share your GFR and creatinine in 2017 and what is it now?

Avoiding dialysis for 3 years is remarkable. How did you do it

Can you please share?

Thanks

SAM

[Jayhawker in reply to htpi1543]

Sam,

My creatinine in January 2017 was 4.65 which gave me an eGFR of 9. My BUN was 58. My other data was in the normal range with the exception of my hemoglobin. I’ve been severely anemic for close to 6 years now. Untreated my hemoglobin is only 5.6.

My blood pressure was very low at that time. It turns out that my treatment plan from the nephrologist I was seeing at that time was actually decreasing my renal function. My new nephrologist pulled me off the BP medication and the furosemide. He also discontinued the fluid restrictions. As my hydration improved so did my renal data. Six months after the change in my treatment plan my creatinine had improved to 3.35 giving me an eGFR of 14. My BUN remained about the same. All other data remained in the normal range.

Throughout all of this I’ve had minimal difficulty with fluid retention. Without the BP med and furosemide my BP does fluctuate more now but it’s typically close to 124/76 with pulse of 78.

When I shifted to the vegetarian diet last June I saw more improvement. My creatinine now typically comes in between 2.9 and 3.0. This gives me an eGFR of 15-16. My BUN had elevated to 73 prior to the shift to vegetarian diet. It is now back down to 43. I’m certainly feeling better with it lower.

I have developed mild hyperparathyroid issues over this past summer. So I’m now taking a medication to deal with that and increased sodium bicarbonate for the acidosis that goes with that. But I’m still only taking three medications related to my renal issues at this point:

Auryxia (for anemia)

Sodium bicarbonate (acidosis)

Rayaldee (hyperparathyroidism)

I still have good days and worse days. Fortunately I work almost exclusively from home. Thus I’m able to keep working full time without much difficulty.

Bottom line? I do exactly what my medical team tells me to do. I learn as much as I can about all of this. I arrive at appointments with questions. And then I get on with life. I really strive to focus on things that I enjoy doing. Oh, and I do work to keep a very consistent routine which I’ve modified to accommodate my decreased energy level. I live alone so have to be sure I don’t overtire myself. I try to balance my workload every day. Consistency really helps me a lot. I also exercise daily. I walk my dog twice a day about 3/4 miles each time. I usually do a light workout on my recumbent elliptical machine. And I get to bed consistently at night. I sleep 8-9 hours a night most nights.

But having said all of this, I realize that at any moment my kidneys could plummet back down to an eGFR of 8-9 at any point in time.. I’m ready to start PD dialysis when the time comes.

Jayhawker

[nh9man in reply to Jayhawker]

I see 4 different nephrologists at my center, one of whom was my nephrologist before I started dialysis. They each take a turn doing patient visits per month. I believe this is the real reason for my situation. I believe one of the doctors is very uncomfortable letting patients do it solo. That will be my next step is to discuss it alone with my original nephrologist, as I trust him much more than anyone else. He has always been honest with me and I respect him. I am just fustrated with the nurses as I have caught all of them lying to me on different things. I don't just mean I think they are lying I mean I can actually verify it... I don't know how they can expect patients to trust them if that is how they behave...

[Jayhawker in reply to nh9man]

That sounds like a good idea to go to your original nephrologist. You might also talk with him or her about the nurses lying to you. That’s pretty serious and would definitely cause a lack of trust. If that doesn’t work with the nurses I’d consider reporting them.

Jayhawker

[curiousmind2019]

Hi nh9man

That seems a bit odd that they would change their mind like this. Perhaps there's some miscommunication between the doctor and the nurse? I feel that sometimes they are not on the same page. I no longer completely trust my nurse's advice, they have given me advice that the doctor later said doesn't apply. At my dialysis center, I do see individuals coming in for training for home hemo without caregivers.

Regarding PD to Home Hemo, I'm around the same age and am currently on PD manual. Can you share why you decided to go to Home Hemo? Also, is it difficult to manage with the needles and sight of blood? How did you overcome it?

[nh9man in reply to curiousmind2019]

I wanted a change from PD to Hemo for two primary reasons. First, while doing PD I had problems sleeping and I believe it to be the cause of a few other side effects. such as causing severe nausea as well a frequent vomitting (which only happen while I was doing treatment). The second reason was I was doing it 11 hours per day every day of the week. (Home hemo would be 3 to 4 times per week roughly 4 to 5 hours per session.)

As for your second question about managing the needles and blood. Honestly I just started in center to build up the fistula. Which I understand takes about 30 days and then they will train me on the procedures for home hemo. So I have yet to deal with any of that, yet. However, as long as I am properly trained I am not to worried about doing it myself. The sight of blood has never bothered me personally.

Additionally, after talking about my situation with the transplant hospital that I am working with. I have been left with the very strong impression that hemo is a much more effective treatment method, as opposed to PD.

[curiousmind2019 in reply to nh9man]

Thanks for sharing. It is quite demanding and I did have trouble sleeping when the solution was too heavy (later my doc reduced it). But sounds like ur side effects were much worse.

Btw did they leave the PD tube in when u got the fistula?

Would love to hear more about your experience with home hemo once u start training.

[nh9man in reply to curiousmind2019]

PD tube is still there for now, but will be coming out once they are sure that I will have no problems with hemo. It will most likely be out by the time I am doing the training.

[KidneyCoach NKF Ambassador in reply to curiousmind2019]

Home hemodialysis is the only way for me. Been doing this now at home for nearly 18 years. Blessings

[Frankie24 in reply to nh9man]

PD is actually considered a better form of treatment according to the medical team I work with. Since it is done 7 days a week, much gentler on body and better results. Hemo is rough, intensive treatment less times a week, I felt awful. Doing much better on PD with cycles.

[Jayhawker in reply to Frankie24]

Yes, my nephrologist says the same about PD dialysis.

Jayhawker

[KidneyCoach NKF Ambassador]

Firstly, the information they are giving you is incorrect. NxStage home hemodialysis system is FDA approved for SOLO use. Your nephrologist is the one who makes the decision of yes or no to solo dialysis. Then the clinic will and must submit to his "prescription". So, reach out to your nephrologist and have a real discussion with him about your needs, expectations and desires to be allowed "individualized" treatments. It is not the clinic whom decides no or yes rather the doctor. Get clear, concise and understandable answers to all your questions. Take notes and make sure the clinic sits in on the conversation if you want them to be sure of what he's answering and wanting for you. Many Blessings

[Shooter0202x]

You can self treat I was trained to do that but in all honesty it's much better to have a care given just in care you have an issue .I've had issues where I pulled my fistula needles applied pressure to stop the bleeding . Put a bandaid on after it was no longer bleeding and a few minutes later I didn't notice or feel it I was bleeding as if I cut an artery my daughter who is my care partner was cleaning up our sUsed supplies and turned around and saw I was bleeding profusely applied pressure and stopped the bleeding we needed more than my one usable hand to deal with it . Also during treatment you run the risk of low bl[d pressure which cN cause you to pass out cause heart problems etc .if you can for safety if fo no other reason try to get a care partner

Good luck and God bless