Starting Home Dialysis-Advice?

[WillaCather]

I received a kidney transplant in 2014 and now I need another one. I had never been on dialysis before but now I have to go on. I have elected to do dialysis at home. I'm nervous about every part of it from doing it correctly to the amount of space I will need to store materials to whether or not I will actually feel better as a result. Any advice?

[AndrewT]

Dear WillaCather,

My Advice is to START on Heamo-Dialysis, in other words, IN a 'Hospital' Setting- especially since you have never had Dialysis before. Sorry but I just 'think' that it's Safer.

Once your 'Established' there is No Reason why you cannot 'Change' Methods- notwithstanding any Hospital Concerns. I would 'Speak' to your Team Willa.

AndrewT

[WillaCather in reply to AndrewT]

Thanks for checking the time to reply, Andrew. I appreciate it!

[ChaiCoffee]

hi I have been on dialysis for more than a year and I would also advise you to start with Heamo Dialysis. In the hospital the nurses and doctors will be able to keep a much better eye over you.

[Eyak1971]

Did pd and Hemo. Liked pd over Hemo.

[LavenderRabbit]

I don’t think that any Doctor, hospital or medical center is going to let you just go home and do dialysis on your own. You will start in the hospital then move to a dialysis center. There, if you and your doctor and the center agree, the center will train you to do home dialysis before they let you do it alone.

If you want to do it at home, tell your doctor right up front. Let people know that is your goal.

[WillaCather in reply to LavenderRabbit]

My doctor is urging dialysis at home given the fact that I am still very active. Thanks for your feedback.

[LavenderRabbit in reply to WillaCather]

good!

[Beachgirl32]

it a

Decision That

T you have to make that is best for you . I am doing peritoneal. Dialysis ( pd dialysis) for me the deciscision was made I didn’t want to put a needle in me and my blood pressure is so low now. Pd is very safe you are train with a pd nurse. The pd nurse is there for you with any question you can call her someone is there at night to to answer your concerns

Pro for hemo three times a week. Pd does have to be done every day. But one the catheter heal up you start with manual pd you will go for classes at your dialysis center. my brother chose to stick with manual he did it four or five time a day the whole process took him like 30 minutes . His doctor was two hour away when he visit he did his manual dialysis in his car when he had to he was very sanitize. But that was his closest doctor. I started with manual then went on the machince you are train on that too. I like the Machince cause I do it overnight and have my whole day free and I don’t have to carry the fluid in my stomach in the daytime . I did have some bad drain pain when I first started but the catheter had to settle . Ask your neph if you can visit your dialysis center and you can even talk to the hemo and pd nurses and maybe some clients to help you decide .pd does need storage you will get about 30 boxes or more . They will send you everything you need. If you chose pd if I can help with anything please feel free to ask.

[WillaCather in reply to Beachgirl32]

Thanks!

[Jennypenny89]

Hello!

I definitely recommend Pd dialysis at home. I did it 2 times in my life. Once when I was 13 for 3 years. And then 21 for 7 years. I would never recommend HEMO to anyone in my opinion. Too many body effects doing hemo, that make you feel funny. Pd has no effects. You just have to be sterile for both. 😃 it's not as scary as it sounds. Just take the training seriously, keep your site clean, and don't stress too much. Good luck

[WillaCather in reply to Jennypenny89]

I really appreciate your comment! I'm starting training next week!

[sugabear]

It definitely depends on the type of dialysis he will be doing. I agree with everyone who said to start Hemo in clinic. Right before my husband got the call about a kidney, he had started in-home hemo and it was not a pleasant experience. They delivered a lot of materials to the house, many of which are still still here today. They did provide us with a chair, all the machines and all the sanitizing equipment, but you need a pretty big space to be able to store all of those things. If you live in a small house or apartment, you’re not going to have the room. Also with Hemo, you have to be incredibly clean. One small speck of skin that gets into your fistula and you could have a massive infection. He also went through training for more than a month and was never 100% able to get the hang of it. It also would take most of the day because he was trying to train. We also had a nurse who love to tell horror stories about in-home dialysis, so that didn’t help. I am not familiar with PD, so I would listen to other people and talk to the doctor. I hope you get a kidney soon.

[Darlenia]

LavenderRabbit is correct. Doctors will not let you just go home and do dialysis on your own - there's a lot of training and oversight. The type of dialysis chosen rests on your nephrologist's views of you and your needs. He'll seek your input, of course, but your doctor orders and prescribes for what is determined best for you. There are two basic versions of dialysis - peritoneal dialysis and hemodialysis. Both forms are available at most dialysis centers. The dialysis center becomes your home away from home for all dialysis patients whether you're on PD or HD - it's where you go for labs, immunizations, medications, etc. You'll also meet with your nephrologist, social worker, and dietician there on a regular basis. PD is well known for being the most gentle on your body, particularly your vascular system, since it doesn't use blood. Hence, it's the least likely to calcify arteries needed for transplant according to our nephrologists. The downside is that it may fail over time. HD (in-center and home-based) uses blood and often requires a support person in the vicinity to place needles, to help with bleeding issues, etc. But it's effective. When doing either PD or HD you'll need dedicated space for supplies and so on. Some creatively place supplies inside dressers, under the bed, etc. YouTube and other sites will show you the supplies, layouts, etc. Please note that HD and PD require different access sites. One isn't able to "try out" one against the other. Apparently you've picked PD and that's a great choice. My hubby was emergency hospitalized and started on HD (it pulled blood like crazy resulting in lots of cramping and blood pressure issues) and he quickly transitioned to PD which was a lot easier on him. When a dialysis choice is made properly, everything can be handled very smoothly on an outpatient basis - unlike our unpredictable, time consuming, and expensive experience. Thankfully, my hubby received a transplant a year later as a 71 year old. We were grateful that the transplant team found only minor arterial calcification inside his body. It appears that your team is setting you up for another transplant. May that happen sooner than later!

[horsie63]

I had my PD catheter lnserted

Jan 12 started training 4 weeks later when healed. I did training in center for 3 weeks. In March I got the Claria cycler. I do my dialysis at night then I go to work M-F. I have my days free. I do still get tired but we are working on my anemia.

They don’t just leave you. I go do labs every month and see my doc monthly. I can call my nurse anytime I have questions or issues.

[Kbristow]

The best dialysis modality will depend on what works best for you and your lifestyle and comfort level. I chose PD because I wanted to have more control over my own schedule. I wanted to dialyze in the comfort of my own home. I wanted the flexibility to travel. I didn't want to deal with needles. I wanted a more gentle way of doing dialysis - everyday as opposed to 3x/week. It worked out very well for me, and I never had an infection. I did it for a year before I got my transplant.

I also know people who chose in-center hemo for very good reasons. They felt more confident leaving the treatment to the professionals. They wanted to be in the company of other patients and health professionals. For some, being away from home, going to a center gave them a sense of retreat from the rest of their life, or they wanted their home to be just home, separate from their kidney disease and dialysis. Plus you may not have the space to dialyze at home. There are lots of reasons to do home or in center. Look through all the factors listed and choose whatever works best for you. I also know people who have transitioned from one method to the other; you are not locked into one modality.

And like others said, you will not be sent home until you are completely trained and ready. There is plenty of support for you from your center even after you start.

Best wishes to you.

[KevM1]

PD is best option for a very active person. I did Hemo 3 days a week at a center, for a few months, it was awful. I was not happy. My Nephrologist suggested I have PD Cathedar installed , I did, then had minimal issues for next 5 years until Transplant. -- did dialysis overnight while sleeping --You definitely want to try for this route, doctors permitting. Best of Luck!

[WillaCather in reply to KevM1]

Thanks so much!

[MToQ]

I did PD for years. Overnight. Gave me my days free even tho I tired easily. It is definitely gentler. Plus no fluid restrictions. I believe with hemo, you have to limit all forms of liquids, not just water. You can eat/drink more "normally" on PD. Easier to travel, be outside and stay active. More freedom. Just be sure to read and follow all the steps, day in and out, even tho you will end up knowing them by heart. I found that by reading each step every night as I was doing them, I would be sure to keep it as sterile and safe as possible. Never miss a step. You are in total control. I kept everything clean. I didn't get any infections, which is pretty rare. At least that is what my nurse told me and others who did PD. One draw back is that you need space for your supplies. If you have the space, you are golden. Good luck.

[WillaCather in reply to MToQ]

That's awesome advice, thanks!

[Winner76]

hi I done peritoneal dialysis for 7 years , no problems at , I started when my baby was only a couple of months old. I had her at 25 weeks. Done it for 8 hours every night . You just need a small table in your bedroom. And somewhere to store the stock. If you don’t have the space ask for a two weekly delivery instead of the month. You get used to setting it up every evening just keep everything clean including your hands . Good luck you’ll be fine.