Undecided on Dialysis

[Abbiegirl]

Hi, we have so many questions that we cant seem to get any clear answers so hoping someone had a similar experience or can offer some insight. My husband was stage 2 in November. Gfr was 45 and creatine stayed around 2.9 to 3.1. In December he caught a virus. He was pretty sick for a few weeks, but never really regained his energy and just felt bad. We let his nephrologist know he still wasn't feeling normal. In February he had labs done. He was immediately sent to ER. Creatine was 5.1 and GFR was 14. Since then he has been hospitalized 3 times. Today his labs said GFR is 11 and creatine is 6.7. My husband has been incomplete quadriplegic since 1994 so his body reacts differently but other than his kidneys the rest of his organs are tip top. His big internal fight is, he has been fighting his body since 1994, he's 51, and just tired of fighting his own body. He lost his sister in 2022 from kidney disease, his dad is on HD and in a nursing home on hospice. He knows he will not do HD, he knows his body won't fight that fight, but his doctor keeps telling him he wants him to do PD. We have tried to educate ourselves, his nephrologist kept telling him until Thursdsy he wasn't close to dialysis. Now today they called to schedule the pd tube insertion procedure, but he doesn't even know if he wants to do it or just wait it out until the end. Also, nephrologist kept telling him it was a virus and his numbers should come bck up, they didn't obviously. Also same doctor as sister and father. Please offer amy advice/suggestions. I understand and support any decisions he makes, it's his body not mine. But I also wonder should he go to another doctor, is it too late? How do we actually see and understand the entire pd process before getting pd tube implanted? We have been together through everything and he is my best friend, so i want to say his doctor really dropped the ball here but even if he did, what can we do now??? Thank you so much~so sorry for the long post

[Charl13]

Hi there, sorry to hear of your dilemma. I'm 52 this year and have been on pd for 6 months now. I'm not going to say it's been easy but unfortunately I don't have family support. My mum , brother and my sons are very emotionless and don't ask about it at all. Luckily I have good friends and even work colleagues who do support me and are there when I have a wobble. Honestly though I'd say especially with support to do pd. I'm with you on not doing HD, I couldn't face it either. I do pd every night manually, go to bed for it to dwell, get up and drain and go to work and carry on as normal. I'm much more tired but going to work keeps me going. I love my job. I had some peer support from a hospital group which was great , as doctors can tell you what they are going to do but not how it feels. The lady I spoke to gave great advice and also explained if you've every had your ears pierced , it's like that, you know there's a hole but you don't feel it!! It's true I don't remember the tubes are there most of the time. The downsides are the lots of laxatives because they don't want you getting bunged up as it pinches the tube!! Ouch that's not nice!! Also showers only not a bath. Seriously pd is better than HD and better than the alternative! I'm amazed everyday how a bag of fluid is keeping me going. Good luck in your journey. Feel free to ask any more questions.

[Pepperthedog]

Here in the UK we have a free-at-the-point-of-use National Health Service - it's under huge strain and imperfect, but we can usually get treatment. In this system we have the right in your circumstances to ask for a second opinion - is this something you can do? It may be too expensive, or the current doctor may refuse to treat your husband if you do go down this route; but if not, I'd certainly do so. Very good luck to you both.

[TDPowers]

Hello my son was in a similar situation he has muscular dystrophy and had kidney failure in 2020 GFR 10 creatinine 6.1 we decided to try PD at home. The procedure to put the tube in for the dialysis was minimally invasive. He’s been on PD for nearly 2 years with no problems It’s really not that hard to do it at home and it’s made him feel better. I think it’s worth a try also it’s always a good idea to get a second opinion

It’s overwhelming but you can get get the hang of it pretty quick. I wish y’all the best

[Lee75glom]

I am sorry you and your husband are experiencing so much uncertainty and anxiety. I am on hemodialysis with an av fistula as my access. So I cannot offer comments on peritoneal dialysis. However, if you are unhappy with the responses from your current nephrologist, you probably should ask for a referral to another one.

[unknownunknown]

So sorry to hear of your dilemma. Life is just hard sometimes and not fair! Lots of hindsight now in our case. My husband (65 yrs) also got sick and his gfr dropped from 24 to 14. (It did go back up to 17) His nephrologist wanted him to do PD so that was the plan. Then we had a death in the family and it became overwhelming for us to learn at home PD. In the pre-work up for getting his kidney transplant, dr said his PKD kidneys were bigger than footballs and there was no room for the PD fluid. His nephrologist never mentioned that when encouraging us to get PD. The PD representatives that visited our home made it sound very easy. Do your research ...find people to talk to...search the internet... it seems to us the more we search and ask the more we find out. The result of this is we become comfortable in those decisions. By all means ..get another opinion! Personally I would get the surgery now as it takes time to heal. You can still decide not to do PD but its ready if you do decide. Sometimes it is easier to give up the fight for life. Its a huge personal decision my husband may have to make someday. Prayers for your decisions.

[XmasKidney]

I was on PD for four years ( in my 20's) before I had my second kidney transplant and i am glad I was able to do it and not to HD. The advantage of a home dialysis modality is that your treatment provides more frequent clearing of the toxins and waste from your blood stream than traditional in-center hemodialysis. This also means you have less fluid restrictions because you are clearing your waste daily.

Most in-center HD treatment schedules ( in the US) are three days a week for up to fours hours that means you are only getting 12 hours of clearing the toxins and waste of out your body.

With a Home modality you like PD - peritoneal dialysis - you could do your treatment 7 nights a week for 8 hours a night and they you are getting more cleaning time 56 hours. Although it seems like a long time its closer to how your kidneys function normally. (There are also Home Hemodialysis treatment options)

Healthy kidneys provide us with clearance of toxins and waster every minute of the day/ 365 days a year.

I used to eb a dialysis social worker and one website which i found to have great information about home dialysis choices is homedialysis.org/

I would definitely recommend a second opinion or even switch to an entirely different doctor. If the doctor doesn't fit and your insurance allows you to switch then do it.