Getting ready for home dialysis


#1

Hi, we are new to this, just having been told my spouse will need dialysis soon (we are in our 50’s). We are planning for home dialysis and waiting to meet with the surgeon…

1- How far in advance does the catheter need to be in place? If we are being told we may not need it for a year (Or it could be any day) can we wait a bit? Can they do IV at first if it is needed before the catheter is placed?

2- Is it true no ocean swimming ever after it begins?! THis is all very overwhelming and scary…

And, my spouse looks so healthy- how can it be that they are so sick? Hard to navigate all of ti…


#2

It often is overwhelming to learn that you or someone you love has a chronic illness. If your husband will need dialysis in the future, it might help to look at https://mydialysischoice.org/. This tool may help you and him decide which dialysis option best fits your family’s lifestyle and values.

You ask how he can look healthy and be sick. People who have kidney disease may not notice the symptoms in the early stages and some symptoms they do have can be attributed to things like the flu or even feeling overworked. You can read about the symptoms of kidney disease in Module 1 on Kidney School. You can also read about treatment options in Module 2. Module 5 may provide tips that can help you and your husband cope with kidney disease. There are 16 modules in Kidney School. Hopefully some of them will help. http://kidneyschool.org/mods/

If he believes peritoneal dialysis is the best fit, it’s best to get a PD catheter placed a few weeks before dialysis is needed. This will allow time for the exit site to heal so training can be started and he can avoid a hospital stay. So far as swimming, talk with the doctor and home training nurse about swimming with a PD catheter. A textbook written by nephrologists who are PD experts suggests that once the catheter has healed assuming there is no infection, it’s OK to swim in chlorinated private pools and in the ocean as long as the beach where your husband swims isn’t in a highly populated area or near a sewage outlet where sewage is dumped into the ocean. However, it’s very risky and not recommended to swim in lakes, ponds or public pools. Your husband can ask the doctor or home training nurse about special bandages to use when swimming. Here’s the link to the page in the text book that talks about swimming. https://books.google.com/books?id=hSkN5rbg6o0C&pg=PA361&lpg=PA361&dq#v

There are 3 types of vascular accesses - fistula, graft and catheter. The best vascular access for hemodialysis is a fistula because it usually lasts longer, performs well, and has a lower risk of infection. It an take several weeks to months for a fistula to develop. Some people’s blood vessels won’t support a fistula and they can get a graft. A graft hooks an artery and vein together using artificial material. It requires a shorter time from surgery to use, but doesn’t usually last as long and has a somewhat higher infection risk than a fistula. A HD catheter should be avoid as much as possible and only be used if dialysis is needed emergently. Catheters go into a major vessel in the heart and has the highest risk of infection. HD catheters don’t work as well as fistulas or grafts so they may not allow the best removal of waste products from the blood during dialysis. If you use the Kidney School link above, Module 8 is on vascular access and might answer your questions.

There are things that can be done to slow the how fast kidney disease progresses including changes to medications, diet, etc. If he’s in chronic kidney disease Stage 4, your husband’s insurance may cover getting advice from a dietitian who provides medical nutrition therapy (Medicare covers this). If you have kidney disease classes in your area, they can help. If not, Medical Education Institute who operates this website created a series of presentations entitled “How to Have a Good Future with Kidney Disease” that you can access here - https://lifeoptions.org/resource-library/good-future-patients/.

Finally, he may be a good candidate for a transplant. People can be evaluated now and get a transplant as soon as when kidney function is 20% or less. Some people are able to avoid dialysis, especially if they have a willing kidney donor. Patients can self-refer to transplant programs. He may want to find out where his insurance would pay for a kidney transplant. This database allows you and your husband to check out area transplant programs’ outcomes. Choose “kidney” for the organ and enter your zip code to get programs within 50 or more miles from you. https://www.srtr.org/transplant-centers/

You may also want to be aware of the Home Dialysis Central Facebook group. There are several thousand patients and dialysis staff who post regularly to that closed group to get support and their questions answered and . You have to request to join and no one outside the group can see what you write there. https://www.facebook.com/groups/HomeDialysisCentral/


#3

THank you very much! I will read the links and greatly appreciate all of your information!

The Dr only told us about a fistula and in center dialysis, and wanted to rush surgery right away. We then (after our heads stopped spinning) asked about in home PD and he said that would be fine and a good option. It’s frustrating we are having to know what we don’t know and bring it to him! I thought fistulas were for in center dialysis- we don’t want that. So why do you say a stomach catheter is only for emergencies, but the Dr says that’s what’s next for in home treatment. I feel like the more I learn the less I understand.


#4

I’m sorry if I wasn’t clear. Fistulas, grafts and hemodialysis (HD) catheters are all different types of vascular access and used for in-center or home HD. The HD catheter is inserted in the upper chest with the tip in the large heart vein. It is used for dialysis that is needed emergently or when someone doesn’t have good enough blood vessels to create a fistula or graft.

The peritoneal dialysis catheter is usually placed in the lower abdomen and is used for PD. It is best if the PD catheter is placed a few weeks before dialysis is needed. This allows the exit site to heal. In home training, patients learn how to take care of their exit site and do all the steps of PD. PD and any home HD allow more flexibility and make is easier to work and travel than in-center HD.

Has the doctor said what your husband’s glomerular filtration rate - GFR - % of remaining kidney function is? If he has no symptoms, he may be able to delay starting dialysis a while. Some people don’t start dialysis until their kidney function is 10% or less.


#5

Thanks. We are at 10%.


#6

If he wants to do PD, I’d suggest he get a PD catheter soon. He and/or you might want to join the Home Dialysis Central FB group to ask questions and get support. In addition to patients and their loved ones, there are renal professionals who post and correct information that is not accurate.


#7

I know it’s a lot to process, I too feel great, but my kidneys are shot. I started PD (Peretonial Dialysis) at home about 2 months ago. I had my catheter implanted approximate 7 weeks prior to my first exchange (treatment) . There is no such thing as an IV, only hemodialysis where you have to have a fistula implanted. If you or your husband have a choice as to what type of treatment to have, definitely go for Petitonial Dialysis. Hemodialysis is very hard on your body, most people have treatments 3 days a week at a dialysis clinic. With peritoneal dialysis, you hook up to a machine that sits on your nightstand and the machine does your treatment while you sleep. There is no pain and you sleep through the night. I was told I could swim in the ocean, but not swimming pools. With the catheter, you have a small silicone tube about 8 inches long that protrudes from your stomach, so hygiene is of utmost importance. I hope I have answered some of your questions.


#8

THank you SO Much!!!