Dialysis about to start

[PTS520]

I was just told by nephrologist about a week ago that he wanted me to start dialysis. I have no idea what to expect. I still feel fine and have no symptoms other than being a little more tired than usual. My appetite is still good, a little minor swelling in my ankles, and I still urinate the same amount. My creatinine is over 7, which I know is incredibly high and my GFR is between 8 and 9. Trying to figure out how much my life is going to change since I am still working full-time, albeit from home. Any advice on what to expect?

[Redoralive]

Depends entirely what dialysis you'll be going on to. Peritoneal (PD) can be done overnight by machine (APD) or by yourself intermittently during the day (CAPD). I did CAPD while working full time for as long as I could and had no issues. Took around 40 minutes to change a bag and I'd time my lunch break around it. With WFH it's great as you could set it up and work through it.

I didn't do the overnight one as I'd get really bad "drain pain". It's like an intense cramping from where the fluid is leaving the tube, and it would stop me sleeping.

Haemodialysis is harder. Unlike PD, there is no quick option. You'll either go to a centre for 2.5-4 hours a 2-4x a week, or if you're really good with your own blood/medical stuff do it at home for that time. You may be able to do work one handed if you have a laptop and you took it to centre/ you have a large enough office to fit home equipment but in my experience any sort of movements cause an imbalance in the pressures within the lines and are likely to set off alarms in the machine (stopping dialysis and making those 3 hours drag).

I was on dialysis for 4 years before recieving a transplant. It's time consuming and it was a lil stressful and upsetting at first, but I got quite used to it before the end. If you're worried talk to a renal nurse or someone on the dialysis team- they're all really lovely.

Also idk if this will help but I always tried to remember when times got tough that dialysis keeps you alive. And a lil stress and medical kerfuffle is worth that.

Hope dialysis goes well for you

[OperationKidney]

I'd take a class asap if I were you. Fresenius offers really good classes about dialysis and how it works, the various options, etc. There are options to do it from home if you qualify, so that way dialysis doesn't interrupt your life as much (and those options are a lot easier on the body). Personally I'd recommend starting before your GFR drops further because I waited and had some of the worst symptoms like leg cramps, horrible uremia, and even auditory hallucinations. Best wishes top you. Dialysis might sound scary but it can be a really good thing too!

[Hidden]

Hey PTS520,

Dialysis is a very good thing but each person responds differently to it. Like what has been said already, you are going to have a few options. PD dialysis is probably the most non intrusive route cause you can do it at home either overnight with a machine or through out the day with a twin bag routine. Your other option is hemodialysis which is for the most part done at a clinic and you are there between 2.5/4 hrs. This all depends on how your body responds and how much dialysis your kidney specialist thinks you need. If you do hemodialysis they will either put a catheter in one of your arteries or they will create a fistula in your arm. Obviously nothing comes without its risks and issues, yet dialysis is life saving and so it is worth it. I would also recommend you talk to a dialysis tech or nurse and your nephrologist and see what they recommend for you. Best wishes to you and my prayers are with you. Take care. If you have any further question or would like more insight into what you are about to get into PM me and we can talk further.

Cheers.

[PTS520 in reply to Hidden]

I already have the fistula in my left arm. I got that surgery last February, right before Covid shut everything down. My nephrologist mentioned doing this at home. I went to a center about two months ago, and I think the size of the needles they use intimidated me from going this path to start. I am going to start in center and see how daunting a task it will be to do from home. My wife used to be a nurse's assistant and has drawn blood in connection with a phlebotomy class she took, so she is not entirely untrained. I might try to transition to this after a few weeks of going to the center. The center is directly connected to my nephrologist's office, so I am comfortable with the care I'll receive there. I appreciate the advice people have given so far. This forum has been really good for realizing that life continues even if it does change.

[Hidden in reply to PTS520]

Just my opinion, but I wouldn't do hemo at home. I went to the center and let them clean up before and after. It would have added another layer of stress if I had to prep and clean. All I had to do was show up. Look at some of the videos online so you know what you are getting into.

[Hidden]

Good to hear and great to hear you were proactive and got a fistula that makes things a lot less painful in ways. Trust me getting a catheter put in is not fun!! I am glad you have joined the forum and yes at first things look daunting but once you hear/see other people’s experience, you start to realize it is something that is doable. Best of luck to you.

[mhawk123]

Well,I am glad you have decided about the dialysis and is on your way. But have you thought about Transplant evaluation or living donation as an option???? I did PD at home while I awaited my transplant evaluations. Got a kidney in seven months as I was truly in need of kidney.

[PTS520 in reply to mhawk123]

I am on the transplant list. Unfortunately my friends and family are either too unhealthy or unwilling to go the transplant route. I have heard of people waiting a few months or many years. I am ready, but for now it's dialysis and a waiting game. I will start dialysis either later this week or early next week and I am sure I will adjust and do whatever I can to stay healthy. Thanks!

[Jayhawker in reply to PTS520]

I’m also on a transplant list. But I’m not yet on dialysis. In fact, there has been a modest improvement in my renal panel data over the past 2 months with GFR coming in at 19 and 20 in February and March, respectively. As I’m typing this I’m waiting for my April transplant labs and an April renal panel. We’ll see if my GFR is going to hold in the more recent range. If so, my transplant nephrologist told me he will need to move me from active to inactive status on the waitlist because I’m “too healthy” for a transplant. Pretty crazy...

Jayhawker

[Hidden]

What type of dialysis? Pt or hemo? It has been so long I barely remember. I do know having good muscle tone is helpful. Once I stabilized on hemo it wasn't bad. I am sorry this has happened to you.

[mtwskk]

I agree with PTS520 however I still vote for PD especially if you want to work. The big advantage of PD is you have total control and can do it while you sleep. I was on about 2.5 years and worked and even traveled for business had PD supplies shipped to the hotel. The big advantage of PD is you can eat and drink your normal food without counting each ounce of liquid you drink and because you do it nightly well almost nightly you can eat and do whatever you like. Check into it. There is no recovery time about 1/2 hr setup and another clean up and process is about 8 - 11 hours however your sleeping and watching tv for most of it. Check it out.