Feedback on those on dialysis

[GinLee]

I am very near dialysis. I have been told about several methods and wondered which is easier , also interested in those who are doing theirs at home.

[Hidden]

I can't help you directly with this, but I can tell you what I did and maybe that will, in turn, help you. I was diagnosed with a GFR of 32. When I was able to research ways to slow the progression I turned to the various modalities for dialysis. I researched and found a book called, HELP, I NEED DIALYSIS! How to have a good future with kidney disease by Dori Schatell, MS & Dr. John Agar. The book explains all modalities and discusses the pros and cons of each and also provides a lot of resources. You can get it from Amazon at a very good price.

I've gone through it several times and for me the decision became easy. HHD was my best option as it would allow me to continue my lifestyle of choice and travel when and where I wanted. I spoke to my nephrologist, received his approval, and while I'm doing all I can to slow the progression of CKD, I have no worries about what the future will bring.

I hope it helps you as well.

[Hidden]

Hi GinLee,

We are doing home hemo and have done it for two years now. I want to write to you tomorrow and am happy to tell you about it and to answer any question. Until tomorrow...

[Olivia007]

My mom went to Davita and another facility and had it done there for about 6 years and then passed away she was 82 when she passed away but she had so many other ailments.

With going to Davita she went 3 times a week each visit was 4 hours long about 3 and a half on the machine and 15 mins before getting on the machine then 15 getting off. They took her blood work constantly maybe every week or biweekly and that would tell us all her numbers and what she needs to do to get better. They took her weight every time she was there. Took her temperature gave her vitamins in the dialysis machine like vitamin D she was low in.

It was difficult for her to sit still for that long and then the hours they offer were horrible you have to wait till they have an opening to put you at a time slot u want to come in like she wanted 6am-9am and in the beginning she had to wait for that slot. Eventually she got it. She went Monday Wednesday and Friday weekend off

Take into consideration weather in the winter in Michigan if it snowed they had to leave Early get there on time.

Then sometimes a lot of new dialysis techs were getting trained on her she hated it because they would poke her in the wrong areas of her fistula where she hurt and bruised easily because again they were new and getting their experience my mom hated that. I moved her to another facility that wasn’t Davita and the employees were a lot nicer and helpful and caring and well trained. Davita is everywhere like McDonald’s I took her later to a smaller facility Davita was like a revolving door employees didn’t stay or got moved around a lot and not very attentive they had a lot going on at one time.

When she got home she was tired and slept.

Whatever you choose watch your diet take any meds and watch your liquid consumption. My mom didn’t and her numbers were like a yo-yo and she felt horrible. Best of luck.

[Darlenia]

Hi GinLee. You're presenting a very broad question. It's a great idea to discuss the different forms of dialysis with your nephrologist. There are two broad categories - hemodialysis dialysis (HD) and peritoneal dialysis (PD). HD (both in-center and at-home) directly access your blood to take out impurities whereas PD (home only whether using a manual or the cycler approach) uses a dialysate and osmosis to cleanse the body. They all come with plusses and minuses. With in-center HD, everything is taken care of for the patient. One generally shows up for 3 or 4 hour sessions 3 days a week, around 12 hours total. Some actually find centers that have overnight hours and simply sleep during the entire process. Some read, work on laptops, knit, watch TV, etc. during those in-center sessions. When one is done, one simply leaves. With PD and at-home HD, a large amount of supplies are sent to one's home to use. You are completely responsible for your care. Occasionally, a partner may be needed to help you (more common with in-home HD). I suspect the vast majority of those using either form of home dialysis will "hook up" and do their dialysis overnight, although one can also do it during the day in either situation. The benefit here is that there is no travel, one is comfortable at home, etc. Another significant advantage is that the daily, longer sessions more closely mimic the work of normal functioning kidneys which operate around the clock.

This said, I'm a caregiver to my husband, who started on in-center HD and is now on home PD. Crucial to our decision-making was that the transplant centers nearby prefer working with those on PD as it's easier on their cardiovascular system-apparently accessing blood for dialysis is difficult on the veins and arteries, etc. involved in transplants. So our decision was easy to make as my husband clearly wanted to be placed on the transplant list (which he achieved). PD is working well for us right now. It requires training (and follow-ups now and then) and it requires lots of space for solution and supplies boxes (50 to 60 boxes); but it frees up our days to do whatever we wish to do since he uses a cycler overnight. My husband feels good on it. So we are happy with our decision. If anyone is on the fence about the right type of dialysis for oneself, there is a wonderful assessment one can take which will provide you with feedback if you're located in the the US (not if you're located elsewhere). See link below.

As you explore your options, please be aware that not all dialysis centers will offer all options, nor will your nephrologist personally visit each one (they generally limit themselves to one or two in our experience, simply placing phone calls to the others). So choice of dialysis center is important too. Most appointments, blood draws, immunizations, etc., all occur at the dialysis centers. Hence, your choice of dialysis center plays a huge role in your life. In my opinion, it's a good idea to visit the one you want to use before starting on dialysis - see the staff, visit with the dietitian, check out the equipment, chat about your options, etc. - so you're comfortable with that setting as events unfold. Your nephrologist will start the ball rolling in that regard, implementing an orientation. Of course, your nephrologist has the final say as to what s/he believes is best for you, but s/he is will be willing to listen seriously to your feedback and views as well. I hope this gives you a sense of direction. One last recommendation I would like to make is to consider getting on the transplant list sooner than later. (That also requires numerous steps-lab tests, colonoscopy, echocardiograms, etc.) My husband should have started that process before winding up on dialysis. We were unaware that some completely bypass dialysis by being proactive like that. Of course, this option is also in your hands, it may not be of interest to you. Sending you encouragement that the choices you make will provide the perfect outcomes for you. Blessings.

mydialysischoice.org/#erny-...

[Hidden]

Hi GinLee, I said I would get back to you in the morning, but I wasn't able to, so here I am this afternoon. My husband lost both his kidneys to cancer, and so needed to go on dialysis immediately after his surgery two-and-a-half years ago. He went in-clinic for about 6 months, three days a week, and I drove him to and fro about 45 minutes each way.

After 6 months, we decided to transition to home hemodialysis, for which we needed training for one month in the clinic. It was about 6-hours a day, every day, we brought our lunch, read and studied while we ate, and learned how to do home hemo, running the machine, etc., with a hemodialysis nurse instructing us.

Michael was squeamish about doing his own needles, and you almost need two hands to do it: one had to stabilize the fistula and the other to insert the needle. So I volunteered to be his caregiver and do his needles, run the pump, order supplies, etc. It was a real challenge at first as I wanted to be sure I got everything right. When we started doing it at home, just the two of us, there was (and is) 24/7 dialysis nurse help available for when we needed it.

We are so glad that we made this choice, for we can do dialysis more than the (maximum) three days that Medicare pays for in-clinic. We do four days...some people do more than that. A lot depends on your own body and what its needs are, how closely one follows diet and fluid guidelines, etc. So more dialysis than just three days is better for the body, better for one's health, we don't have to drive anywhere, and we have wiggle room in our schedule if need be.

Medicare pays for our equipment (a comfy recliner dialysis chair and the pump, lines, etc) as well as the supplies (needles, saline solution, paper supplies, bandages, tape, etc.) so there is no real out-of-pocket for us.

If one decides (after gathering information and conferring with your medical team) to choose hemo dialysis, rather than peritoneal dialysis, one will need to have a fistula placed or a graft. A fistula is considered a little better. It's when two large blood vessels are surgically joined together: one provides the access for blood going out (to go through the pump to be cleaned) and the other provides the intake (where the cleaned blood comes back into the body). After a fistula is placed, it takes a couple of month to "mature" to be ready for use, so it's good to think about that ahead of time.

I hope I've given you some things to think about. Our experience has been very positive, Michael is healthy, he is active, we've traveled to Hawaii several times, and we both feel that we've accomplished something good and are a good team.

Please let me know if there are any questions I can help with.

Kind regards,

Gotakidney

[Tolouse13]

Hi Ginlee, I have been doing home dialysis for just over a year, I wanted to do the overnight one but it wouldn't work for me & so I m doing four treatments a day, I wanted to do it at home to enable me to keep working, I m a private carer, I'm used to it now but to begin with you feel as if you are constantly getting ready to do a treatment, it takes roughly half an hour each time.

[GinLee]

Thank you. You are a wealth of hands on knowledge. Just what I needed!

[KateA17]

I am also doing PD at home. I was doing 4x a day but when I started having lightheaded episodes I was reduced to 3x a day. I am much happier doing it at home and like Toulouse13 said, I was not comfortable doing the overnight machine. Between the constant vibration noise, the beeping if something wasn’t right, if I moved incorrectly in my sleep, the weight of the machine, the inability to travel at any convenience whatsoever…. And mostly the inability to control the fluid leaving or entering your body, pain be damned. It only takes me about 20 minutes per session. When it’s almost thru draining, you can feel the “pull” on your insides and I can control the flow before it gets to be too much. PD is also less harmful than hemo. But each person needs to talk to their caregivers first(!!!!). Each of us is very different and have different needs.

I appreciate what “got a kidney” had to say. I’m still waiting for mine 4 yrs after diagnosis and over 3 yrs after getting on the transplant list. It’s so frustrating for sure and in a situation where feeling like you have no autonomy over your own self, so I appreciate having a bit of control over my medication protocol. Best of blessings.