Question about dialysis

[ZenPDX]

I’d like to know why you chose the type of dialysis that you did, Hemodialysis (Home or clinic) or peritoneal? Any insights would be appreciated.

[Bassetmommer NKF Ambassador]

HI Zen, I have done a whole bunch of posts on why and how I choose home hemo. But to reply for you, I choose home hemo for these reasons. I wanted to do dialysis in my home on my schedule. PD was mentioned but I said no because I am a person of size and for some people, PD can put on weight with the glucose that is in the solution. And you carry the fluid in your front gut and mine is big enough without more fluid. And I want to continue to be able to swim and I cannot do that with PD because of the tube. And the last reason, which I did not know until now, is you have to do PD every day.

I chose home hemo for these reasons. I can do it in my home, when I want. It is much gentler on your body. Most people do HHD more often but for shorter times than in center. I was supposed to do it 4 times a week, but since my kidneys are still functioning and my levels of are still not awful, I only have to do it 3 times a week for two hours. I wrote a lot on my experiences and here is one link: healthunlocked.com/nkf-ckd/....

In center would have been my second choice. But it is very hard on the body as the machines are much stronger. If you have crashed or are really bad levels, this is a good choice to get you up and going. You just go, sit and be done. But it is minimum 3 times a week, 3.5 or more hours and it is getting very hard to find openings where I live. Newbies get stuck with the off hours.

If you decide to do HHD or incenter, plan a head. Get your fistula way before you need it so it can heal and mature. Makes the process so much easier.

[ZenPDX in reply to Bassetmommer]

Hi Bassetmommer, Thanks for taking the time to reply. I am currently doing PD but have been wondering if in retrospect I’d have been happier with Hemo . Fortunately, I’ve lost weight on PD but I certainly can see how it would be discouraging to gain weight from PD. Thank you again and good luck on your journey.

[ZenPDX in reply to Bassetmommer]

Hi again, I took your advice and did some more searching for reasons and most were just a religion of the pros and cons of dialysis. I am looking for more background, like my doctor recommended a or b, a friend recommended…, I couldn’t deal with the needles, etc. I’m more interested in the journey to dialysis. Thanks for putting up with me.

[Darlenia]

Hi! A lot of people have posted about this in the past so a "search" would bring them up a good number of them for you. 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 pluses 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. Videos are available on YouTube that show you how each one works.

My hubby started on in-center HD and then switched to 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 a transplant; he received a kidney a couple of years ago. We were are happy with our decision back then. 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 offer all options, your nephrologist will only have privileges to one or two in our experience. So choice of dialysis center is important too - you can choose one that your nephrologist visits or you can chose one that he doesn't. The latter will require switching to a new nephrologist. 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 dialysis choice 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, while this option is also in your hands, it may not be of interest to you. You're wise in asking questions, I think the choices you make will provide the perfect outcomes for you. Blessings.

healthunlocked.com/api/redi...

[ZenPDX in reply to Darlenia]

Hello Darlenia, Thanks for taking the time to reply. I a currently doing PD at the recommendation of my doctor but after a year I’m wondering if I made the correct decision. I wasn’t aware that transplant unit might prefer a person on PD. Maybe it’s just buyers remorse but I’ve been spending a lot of time lately considering my decisions and future. I’ve been on the transplant list for over a year and have already received one call that didn’t work out. A disappointment on one hand but encouraging from another standpoint. Thanks you again and good luck on your journey.

[Darlenia in reply to ZenPDX]

That's impressive...you got a call rather quickly from your transplant center! In my opinion, I suspect you'll get another call soon! My hubby got his transplant exactly one year after going on dialysis. We agreed to consider kidneys with issues so that sped up the process. We also double listed at a better and larger transplant center and that helped too. (Our wait at the local smaller transplant center was over 3 years.) Sometimes it's easy to second guess one's situation, my hubby and I did a lot of that. I think we all do that quite a bit. The nice thing is that your doctor seems to be giving you great advice and referred to to a responsive transplant center. I suspect good things will come your way soon!

[barbara55109 in reply to Darlenia]

3 years! I wish. It's a 6 year wait for me.

[Darlenia in reply to barbara55109]

I really feel for you! That's indeed a loooooong time to wait. My hubbby was 70 at that time and we felt we had to cut back the wait time. So I laboriously searched for other centers - one at a time. Then, suddenly, a couple of wonderful websites popped up that showed all the centers and their statistics! Links to those sites are below if you, or anyone else, is interested in looking at them. (The last link is run by a kidney transplant lady - her site is very detailed.) After we decided to double-list, both centers shared test results w/o any issue. If we had stayed with our first, and closest center, my hubby likely would still be waiting for a kidney today. Perhaps this is an option for you too. But you may have a hard-to-match situation, my hubby's was rather straight forward - blood type (A) and so on. We also accepted a kidney with issues. The journey is hard. I really hope you don't need to wait 6 years for your gift. Sending prayers and hugs your way!

srtr.org/transplant-centers...

txmultilisting.com/wait.htm

[barbara55109 in reply to Darlenia]

Thanks. My insurance will only cover the three centers in my state. Mayo and the university of Minnesota won't transplant fat people. Luckily HCMC will. Also the wait in my region is the same, no matter the center.

I'm not on Medicare. I will have lower costs, but also less flexibility with my work insurance.

[barbara55109]

No choice. They won't let me do PD because I'm loaded with internal and external scarring from multiple abdominal surgeries and I have an ileostomy. I've had my fistula for 2 years but my gfr has stayed above 20. The medicos predictions were wrong about my ckd progression.

[Darlenia in reply to barbara55109]

Yeah! Tell your kidneys to keep it up!