Just got my labs, Potassium 5.7, BUN 90, Creatinine 10.3.GFR 5. Last week I had surgery to put a PD catheter in place for use if needed. Post surgery I was constipated from the pain meds and had difficulty urinating, due to the Foley catheter. Other than getting tired easy from physical exertion I feel good. My doctor wants me to start PD dialysis this week, I think it is moving too fast. My questions is could the labs be skewed due to constipation and difficulty urinating? Both conditions have passed I think I should have my labs redone as I still feel well enough and staying functional at work. I don't want to be stupid about not starting dialysis but don't want to until symptoms warrant taking that final step.
Thanks,
Fleo
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fleo
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How much less function would be needed for you to think it was time to begin dialysis? I also think you may be reversing your thinking. Your current labs indicate a 5% kidney function causing the other issues you mentioned and not the other way around. In this situation, I believe it's time to follow your doctor's advice.
Fleo, there wouldn’t be any harm in asking for your blood test to be repeated if it would put your mind at rest that the timing is right. At least it would leave you without that question niggling you after the event. What was the result of the previous blood test - was it much higher than the latest eGFR 5? It’s a personal decision, of course, but my gut feeling is that it is better to ‘go for it’ whilst you are feeling so fit rather than leaving it until you start to feel unwell. Good luck with whatever decision you make.
I started on CAPD, your renal team will be concerned that you do not become constipated and I am sure will prescribe a suitable laxative to ensure this does not happen.
It all a bit scary but once you begin it will fall quickly into a routine.
I still work full time, I had a room next door to a hand washing facility, the initial 3 minute hand wash and attention to hygiene with your exit Would is crucial to avoid infection.
I unfortunately damaged my tenkoff catheter and had a resistant infection with peritonitis ( 4 times) tube removed but still no good, the infection was my own fault. Till that time CAPD worked really well for me and felt really well on it.
Work with your renal team and try to have positive outlook and be you will be good.
Your potassium looks a little high, have you spoken with your renal dietician?
What a tough decision. There are some concerns either way. First I would ask for another full renal panel blood test. That way you can truly gauge if your numbers were true. The concern about waiting is how toxic do you want to get? This is a real threat. The potassium is quite high and can cause serious heart issues. Because I get not wanting to start dialysis, I would ask the doctor to run the tests again and that will give you a short bit of time.
Here is something to think about. We all adjust to a new "normal". Our brains are truly amazing in that way. You say your are feeling fine, but actually, that's your normal. Once you start PD and you get used to that, you will have a new normal and it may be fantastic. You will be removing a lot of toxins from your blood, your potassium and other levels will be better and I bet you will have even more energy. But like I said, I get it.
Thanks all for the input as I wrap my head around this. Ii went to the hospital for new labs and a chest x-ray today after getting an EPO shot at the doctors (digging out of a baby snow storm here in VA). Doctor considering hospital admission but since I had the PD catheter placed only a week ago I preferred to start on PD if that is the smart path to take which I believe I'm at that point. I hear the advice being given that the time has come and I just need go get on with it and adjust to the new reality, guess I was just hoping for another few months.
I don’t see what it could hurt to have labs redone to put your mind at ease. I say go for it. My labs were worse this time but I think may be due to Christmas eating and a ruptured cyst(I have polycystic kidney disease)
You are doing so well to be working with 5% kidney function. One of the deceptive things with kidney failure is that because the progression is slow we just get used to functioning at a reduced rate and actually forget our ill we really are. I only really see how bad I have got when I meet up with healthy friends of a similar age and I see how much more energy they have. I am in the UK and just behind you in my journey as am now down to 10% and the docs want me to have the pipe work fitted next month so that I can begin PD no later than 8%. My advice would be to follow what you doctor is recommending. From what my doctors have told me you can start gradually with PD when you have some residual kidney function. Let us know how you get on.
I had the PD catheter surgery a couple of weeks ago, surgery went well and access site has healed nicely. I now go weekly to get the catheter flushed since I still have not decided to start dialysis. My labs were pretty crappy but steady. I had a pretty taxing work day and at the end of the day felt totally whacked out, but I don't know if that was due to anemia or a progression of the disease. Next week I meet with the transplant team for the initial consultation and I am expecting to get some guidance regarding pulling the trigger and starting dialysis, which I'm okay with.
Okay, best of luck with your access surgery, I'm sure it will go well. It might be interesting to see how this things are handled in the UK versus the US, good to have a comparison. As my PD nurse told me I'm pretty much on dialysis now since they are flushing the catheter, just not getting any dwell time. I've pretty much decided to start dialysis after meeting with the transplant team, if that is what they think is best.
Thanks all for the inputs. I did request and received a new renal panel and my creatinine dropped from 10.2 to 9.6, gfr increased to 6%, and potassium dropped to 5.4. I had my appoint with the PD nurse to change the bandage from PD catheter surgery. All was well. The nurses told me I was there to start PD training that day and I told them I hadn't made the decision whether I should start dialysis or not. Got the doctor on the phone and he reluctantly agreed. They flushed the catheter, cleaned me up and put a bandage back on the wound.
I'm hearing the sound advice on why am I waiting. I also recognize the "new normal" adjustment my body has made to living with a diseased kidney. I do tire physically quicker than I used to, but I still work, stack firewood, shovel snow (lightly) and don't have other symptoms (nausea, vomiting, itchiness, edema, etc.) I do sense I am occasionally not as mentally sharp, but I've asked people I trust to tell me if that is the case. The nurses and doctor tell me I should be feeling quite sick at a gfr or 5 or 6, but that is not the case. I feel like I'm being hard headed, but if I can have another week, month, etc. without dialysis and I can still function I'm game to give it a go. My wife is an RN so she is watching and I get weekly blood test and EPO shots so it seems worth the risk. I may be way off base but that is how I feel. I have the initial consultation with the transplant team in a couple of weeks and look forward to their inputs,
Again, thanks for your thoughts as I grabble with this decision.
Fleo, as I said in my earlier reply, it is a very personal decision for you and only you to make. It is wonderful to hear how well you still feel, and only you know your body so go with your gut feeling and make that decision when you are ready. Meanwhile, importantly, it sounds as though you are being well monitored and It’s reassuring to hear that you are in good hands, both medically and at home. 🍀
Hi! In my opinion, follow your doctors orders. Coming from some one who has been on PD for 8 months, its not that bad. Eventually you fall into a routine and it just becomes a way of life. You say you still feel well enough but you will have no idea how sick you really are until you start feeling better!! Trust me! If I didn't start when I started, I really believe I'd be dead. And besides, if you have to do dialysis, you want to do it on your own terms. I was the one who told my doctor that it was time to start. You never want to get to the point where you are forced to do emergency dialysis. Good luck to you!
My eGFR is still coming in at 14-15 most of the time; although, it did dip to 11 on July 31st. I am feeling quite a lot better now so I suspect it will come in back up around 14-15 next week. My BUN has improved from 73 to 55 with a shift to vegetarian diet. Otherwise my data looks good with the exception of my creatinine, eGFR and BUN, of course. My anemia is under effective treatment.
So I seem to be hanging in there for the time being. But I’ve been in renal failure since early January 2017 and yet am still not on dialysis. While I don’t want to rush the decision, I do wonder if I’ll recognize the time to start specifically because this has gone on so long. I live alone so am going to need to rely on my doctor and his nurse practitioner to nudge me along...
I suspect that your body will let you know when it’s time to start. I think it’s better to start a little early and do it on your own terms Than to have to need emergency dialysis. Did you decide on PD or HD?
I definitely agree with regard to starting on my own terms. I’m planning to try PD first. Both my first and my current nephrologist agree that it’s a good option for me.
I’m still working full time although I get to work from home a lot—that’s a huge blessing.
That is a huge blessing. I wish I could work from home. Although you employer has been very supportive of my situation. PD works for me. I’m scared to death of Hemo and pray I never have to go that route.
I’m not looking forward to hemo either. Although there is now an option for solo home hemodialysis. I live alone. I’ll be advocating for that when and if I need hemodialysis.
With a gfr of 5 I would say it’s time. I started PD dialysis when my Gfr was 10. I also had no symptoms. I had the same concerns thinking it might be to soon. A couple of people mentioned it’s better to begin dialysis with no symptoms then to start with symptoms. It’s just easier to learn the process without feeling like crap. I’ve been on PD for 10 months now and have to say it is a breeze now. I perform the dialysis at night while sleeping and it doesn’t affect my life at all. I really don’t even think about it anymore. I spent so much time worrying before and now It’s like nothing. Good luck to you and by all means retest that gfr could be an error.
I see dialysis as the end. So I have chosen to not do it even as the pain gets worse and I have trouble staying awake for more than a few hours. I will not fight death. I will greet it with open arms and say thank you, it was more than I could ever imagine. RIP
Hi, i noticed this post and can see it is 2 years ago. When did you end up going in dialysis. My son is in similar boat to where you were at the the time of this post. His highest bun is 36, and potassium 4.2.
I get why you're asking. I was being pressured to start PD, had the catheter buried for 5 years because I felt good. Finally at gfr 7 I was fatigued day after day and started PD. A nurse told me about a farmer patient of hers that was tossing hay at gfr 4. Sounds like a good plan to get your labs again. My nephrologist reassured me when I was down about a particular test result,saying one test should not be cause for alarm. It was trends she looked at. Comforting advice.
I had my PD catheter put in this past summer, but had issues with manual pd during training and stopped to find out why the manual pd was causing me so much back pain, then after seeing several docs over a couple months, started training on cycler, only to have to stop after a week to have hernia repair surgery. I'm just now healed up from that and ready to start on the cycler again next week. But to be honest, not sure why I'm starting. Still feel good with eGFR 5.8, Creatine 9.2 and sodium, potassium and phosphorus in "normal" range. I'm going to ask if I can do PD "part time", like 2-3 days a week for a while and see what they say at the clinic.
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