My current kidney function is at 17% and I recently got added to a transplant list. My nephrologist is telling me that it's up to me when I start dialysis. I'm trying to figure out when is the right time to start.
I definitely feel fatigued most of the time, but I just push through it. Some days it hits me harder than others.
I'm definitely nervous about starting dialysis, but the at home method seems like it would suit me better.
For those that are on dialysis, do you feel a lot better having started it? I'm wondering if all the effort will be worth how I will feel after starting it. I don't know that I want to go through all of it if I'm only going to feel marginally better.
Any help or guidance there? Thanks in advance for your time.
Written by
Picman322
To view profiles and participate in discussions please or .
Hi PicmanIt will be your decision. But with a function of 17, you could hang in there for quite a while. I got down to 13.I did not feel bad at all, actually and was surprised I was that low. I changed up my diet and went whole foods, plant based as much as I could and improved my GFR and lowered my creatinine. I know others have been very successful in staying off dialysis by going this route. Have you tried changing your diet at all?
Thanks for the feedback. I have made some dietary adjustments. Eliminated all processed foods and avoiding sodium at all costs. Trying to stay with a mostly Mediterranean diet and seems to be keeping my numbers steady, as well as dropping some weight.
Hi Picman. I just had this exact conversation with my nephrologist last week. My GFR is 18. I'll be doing in home hemodialysis. Like you, fatigue is my constant companion. Some nausea, mild edema & mild flank pain. Otherwise OK. He said that it basically depends on how someone is feeling & that often dialysis is started when the GFR is 10. I was a bit surprised as I thought that it had to begin when the GFR was 15. I went into total kidney failure 3 years ago & was critically ill. Very little to no urine, lethargy, nausea & vomiting, itching & horrible edema. When I start to experience those again then I know it's time. I hope this helps & I wish you the best!
I had a gfr of less than 15 for 2 years. Some days I was more fatigued with low energy and I would swell in my legs and abdomen especially if I had I higher sodium lunch at work. My BP was uncontrolled regardless of the medications. I started to have nausea, vomiting and overall sickness and the lasix stopped working the way it did in the past. I was ill and at that point my symptoms lead my Dr to the decision it was time to start PD home dialysis.
It’s very time consuming. The only reason I continue to do it is the extreme edema I will experience. The PD doesn’t make me feel better. I’m still fatigued, itchy, have insomnia, many medications for BP, sodium bicsarb, vitamins, lasix, iron infusions. I would steer clear until you’re symptomatic because once you start you can’t go back and it’s obviously no fun.
Hi Picman. 17% looks really good once you drop below 10. I went to 8% and then 7% when I began PD. I was still exercising daily at 9% when I had my first bout of diverticulitis, which I never "bounced back" from. All of this is to say that you should try not to worry - although worry is an entirely a normal response - and live as healthily and happily as you can in the present. If you find it hard to function then maybe early PD is the way to go. Although my eGFR dropped to 7%, my creatine level indicated that I still had kidney function. Early PD does prolong kidney function. For example, I recently had hernia surgery because I was leaking PD fluid. I was able to go without dialysis for 6 weeks so my hernia repair could heal. Having some preserved kidney function saved me a lot of stress since I would otherwise have had to go onto HD with a picc line and travel 2 hours to a center for HD. What you may experience - as I am at present - is the tiredness and lethargy that the body experiences when toxins are being removed. I feel like I am going through what I experienced the first time I started PD. The first few weeks were not easy. But, it does get better in time. And, quality of life does return to a large degree. Best wishes on your dialysis journey.
Blue, One of my big worries about starting PD in July is the "hernia" issue. What, in your opinion, is the best advise you can offer to avoid getting a hernia and causing PD issues like you experienced. And you are the first I've ever heard of who came off PD for 6 weeks, then started again. That's incredible that you could do that! So any tips you can offer to prevent the hernia issue would be mucho appreciated. And are females more prone to that than males I wonder?
Hi Ron! I had an inguinal hernia, meaning that the weak spot was there from birth. Now that I am back on dialysis, my output is higher. I, therefore, think that I had a slow leak since I started dialysis late last fall. I still produce urine and did a 24-hour urine test which showed my doctor that I could likely go 4 weeks at least without treatment. I did weekly bloodwork and weekly phone checkups as well as a clinic visit. I modified my diet by reducing protein and relying more on carbs, like bread, veggies, soups and rice. At 4 weeks, because I was doing well, we extended my time to 6 weeks before restarting night dialysis. I am not carrying fluid during the day yet. Today marks 8 weeks since surgery. I think inguinal hernias are hard to avoid but it probably matters in part where it is located. Mine was in the groin, so I guess it was a matter of time before it became a problem. I think the vacuum I used that day my problems began was my trigger. If you know you have a hernia and where it is, this info alone can be helpful. It was only a day surgery but it was still pretty disruptive, so if you can avoid surgery it is worth trying.
Hey, thanks a ton for this info. I'm definitely going to ask my doc if there's any way to look around to see if I have any possible potential hernia spots like that that could cause issues. Learning about what questions to ask like this are a huge help! Thanks! Really happy they got you all fixed up and hopefully it stays that way! And yeah, I guess this is a warning for me to mind my p's and q's when it comes to lifting stuff. Right now I'm used to picking up pretty much whatever I want. That will change once I have the PD cath surgery in June and I need to make myself keenly aware of the risk of picking up things and doing certain things after that.
My hubby went on dialysis when his blood pressure rose to dangerous levels and the only way to bring it down was to use dialysis. This required a 4 or 5 day emergency hospital stay culminating with an emergency catheter (chest) placement to start hemodialysis, etc. Then more procedures followed to move him to his preferred choice of dialysis (peritoneal dialysis). If one does it right, moving to dialysis should take far less steps and require no overnight hospitalizations. This said, your egfr is at a reasonably good level at the moment. And it's absolutely fabulous that you're on the transplant list. You may very well be one of those lucky people who snag a new kidney relatively soon and never need dialysis. (I understand those on preemptive kidney transplant lists are on a different time table.) So, I would sit down with your nephrologist and examine the trajectory of your labs - the rate and speed at which your egfr, creatinine, bun, blood pressure, an so forth are changing. Are they staying reasonably steady or not? Then I would have a talk with your transplant center about how you fit into the timelines for a preemptive kidney transplant. Doing this should help round out your decision making. Whatever you choose to do, it will be right for you. Sending positive thoughts your way!
I had this conversation with my kidney doc at my appt yesterday. I'm at 22 eGFR BUT due to my small size (4'9" and 92 lbs he think my EGFR may be higher so we're doing a 24 hour urine test to get a better idea of where I really am. I've discussed transplant and then PD when that time comes as I want to continue working. We'll decided when based on my symptoms not necessarily eGFR...itching, increased nausea, edema...etc. So far so good for me. He did say it takes about a month for the PD catheter to heal.
Picman it a personal decision when to start dialysis when I was at 17 percent I was doing really great . I am down to 10 percent not on dialysis yet but I don’t have any symptoms not nauseous no fatigue no edema but I’m on a close watch with my nephrologist he said as soon as I feel any of those or he said most common thing he here is a foggy brain and feeling a tired you never felt before I need to call him . It will be in the next few months if it my gfr keep increasing . I am going to do pd at home I actually have a home visit scheduled for Friday . My gfr has gone up and down that what has kept me off dialysis.I know my doctor said you don’t want to start when you are feeling your worse you want to start when you are feeling a little good.
Hi , please don’t forget to clarify with your doctor whether you are “active” on a transplant list.
Most country only activate status “active” when you start dialysis. Which mean now you have met the criteria but not eligible yet. Anyway, no hurry to start dialysis unless your symptoms are worsening. The waiting time for a transplant is quite a while.
Once you start dialysis you won’t lose your place. You name will just light up and become active for receiving a kidney. Hope this make senses.
Also, starting dialysis nowadays is looking at how you feel rather than follow the eGFR number. The number more like the indication for preparing your dialysis access and give you the time to decide which dialysis treatment is suit your health condition and life styles the most.
I guess from your doctor point of view there is nothing major to concern. That’s why your doctor leave it up to you. Dialysis might make you feel better than now because it will help get rid off the build-up toxic (urea) in your body. It’s totally individual about how one person feel and tolerate the symptoms.
The best plan would be to get your dialysis access ready. You don’t need to start now but whenever you need it , it’s available. It’s much better than having a tube in your chest that is really high risk of infection and going through so many things at your worst condition.
What modality are you going to use for dialysis? I did PD for 6 years. I was on the Wait List in the Atlanta area 7 yrs. The wait time for O Positive blood type in this region is about 10 yrs! I was surprised to get transplanted in Jan 2022. I’m in my fifth month post-transplant.
I was at a 15% GFR when my Neph encouraged me to get the catheter inserted (it was first week of Dec 2015 and he was worried that lots of surgeons take time off for the Holidays). After 6 yrs on PD, I wished I had waited a bit longer. I didn’t feel that bad in 2015. [But the Neph can bill Medicare more b/c he was also the sole Neph in charge of the FMC dialysis clinic I was assigned to for labs, etc.]
Good luck to you! Do some research on UNOS.org. They may be able to let you know the average wait time on The List in your region.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
when to start dialysis
How long without dialysis
Sister's dialysis treatment
Feeling likr dialysis is making me worse
Working on Dialysis w/ Medicaid
