Home Dialysis

[Curiouskidney51]

I am seeking advise on which dialysis to start in. I prefer home overnight but would like to know how others do on it.

[Darlenia]

Hi Curious Kidney! It's a great idea to discuss the varieties of dialysis with your nephrologist. I'm a caregiver to my husband, who is on peritoneal dialysis (PD). The transplant center nearby prefers working with those on PD as it's easier on their cardiovascular system. 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. My husband feels good on it. So we are happy with our decision. If you're on the fence about it, there is a wonderful assessment you can take which will provide you feedback. 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 in our experience, simply placing phone calls to the others). So choice of dialysis center is important too. Most appointments, blood draws, etc., all occur at the dialysis centers. So 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, etc. - so you're comfortable with that setting as events unfold. Your nephrologist will start the ball rolling in that regard, implementing an orientation. I hope this gives you a sense of direction. Sending you encouragement that the choices you make, will provide the perfect outcomes for you. Blessings.

mydialysischoice.org/#erny-...

[Jayhawker in reply to Darlenia]

Darlenia,

Your comments about the dialysis center and nephrologist access are consistent with my understanding as well. It really dies push us to identify the dialysis center with which we’d prefer working first and then select a nephrologist who sees patients at that center. Rather crazy from my perspective.

My new nephrologist actually sees patients at several dialysis centers. He wants the patients to choose. He has no “special” relationship with any specific center. He also said in my Dec appointment that there is a new dialysis clinic being built right beside his practice. He talked with me at length about my dialysis preferences including the PD cycler preference. He’ll check all of that out with the new clinic they’re building right next to his practice. I’m definitely thrilled with this nephrologist!

So glad to hear that your husband has cleared for a transplant. Wishing him well as he waits this out. I’m just about a year into what I was told would likely be a 2 to 2 1/2 year wait for a deceased donor kidney. This first year passed quickly in spite of COVID. Hopefully the second year will too.

Jayhawker

[Darlenia in reply to Jayhawker]

You have certainly found a great nephrologist. Our nephrologist (and his colleagues) will only visit one center which is located close to the big hospital where they're affiliated. I truly hope you and my hubby both receive transplants. I'm concerned that dropping the smaller existing regions in favor of much larger regions (e.i. OPTN) may change our placement on the transplant list. Will we be grandfathered in? Will we be moved up or down? Wish we had clarification.

[Darlenia]

Yes, I'm sure countries do dialysis in different ways. In the US, most dialysis procedures are handled by the two giant dialysis companies known as DaVita and Fresenius - their centers are generally located outside of hospitals and can be found in most cities throughout the US. (I understand those who have Kaiser Permanente insurance plans are taken care of onsite within Kaiser's hospitals.) It can be a bit complicated here.

[Jayhawker]

I wonder if the link considers hemodialysis in a hospital in the same category as dialysis in a dialysis center??? I’m not sure, just guessing.

I’ve decided I’ll use in home PD dialysis when I need to start. I’m approved for a transplant and so have been encouraged to choose PD dialysis rather than HD... I’ve got close to another year and a half before I can hope to receive a call for a deceased donor kidney. That’s if our hospitals are able to keep doing kidney transplants as we continue to grapple with COVID. I’m keeping my fingers crossed and hoping for the best, but we are definitely living through very uncertain times right now.

Best wishes!

Jayhawker

[Hidden]

Hey CuriousKidney51, I just thought I would put in my experience since I have been on both hemodialysis and am now on PD dialysis. Like some of the other replies have said hemodialysis is a lot more intrusive and aggressive. So it depends on your body and how much stress it can take in a day or over a extended period of time. One deals with cleaning your blood and the other deals with filtering your blood over time and not removing it for cleaning and then sending it back to the body afterwards. For myself there were sometimes that hemodialysis made me feel really not great but then there were times that it almost felt like a high for a few hours before then crashing once again due to fatigue and overall feeling sick. Pd dialysis is different because it is almost like therapy to your kidneys and just takes the stress off of them. If you choose/chose Pd dialysis you will get a catheter inserted into your abdominal cavity which then will be used to send saline into your system where it will sit for a couple hours the most it will last ( depending on the bag ) is 12 hours, but it will clean your system over time and much more gently. Also the other great thing is there is no needles that you need to use with Pd dialysis so you don’t have to worry about getting stuck. ( If you have a issue with needles ). You can once your are on Pd for awhile get a cycler machine and then you would just do dialysis at night and have the rest of your day free. I live in Canada and we use Baxter, I know they used to be in the states but I guess there are new companies instead. I don’t know how the states works with insurance and if the government pays for the supplies or you do but here in Canada ( thankfully ) everything is paid for. Best of luck and if you have anymore questions, I am more then happy to give you any insight or personal experience that I can. Blessings.

[Curiouskidney51 in reply to Hidden]

Thank you for your reply.

[Vacuumnerd]

With my personal experience the answer depends on your own situation in life. Doing it from home requires A LOT Responsibilities & Space! You will get pallets "1 to 3 depending" of medical supplies you will need space to store them and will be taking from that area daily. Going to in clinic does everything for you but you only have to deal with getting stuck with a needle or have a port placed in that goes into your heart and puts you at high risk for infection but you dont get stuck with a needle plus you have to deal with the clinic workers which in my case has made what im going through much harder to deal with because the horrible treatment they give