Gfr

[Munf]

What is the lowest point you can start dialysis? Mines falling each week. I'm now at GFR 17. I've cut out everything I should and it doesn't seem to be working. The only symptom I really have tiredness and sometimes loss of appetite ( only very occasionally). I saw my nephologist last Friday when my GFR was 19 and she was didn't seem too concerned.

[Hidden]

Hi, there really isn't a magic number that dialysis is required. However, depending on the modality you are going to use for dialysis the time is coming. This is something you and your physician should have discussed by now. If not, it should happen soon. Personally, I'd be concerned about a doctor who, at this stage, still wasn't taking this more seriously. At this point, you should at least be having conversations about what dialysis and port you are looking into. This impacts when you should start getting ready for dialysis.

You could still be a long way off from beginning dialysis but the conversation should have taken place about it and a plan put in place. Has the doctor explained why you are steadily dropping in GFR? Keep in mind if you are doing all you can you may still be a long way from dialysis but the need to discuss this should have already happened. It's your health, so get a bit more insistent with your doctor and expect a specific plan of action.

[Munf in reply to Hidden]

We are heading down the transplant route. She has discussed with my heart drs and the both think it's my heart medication ( which I can't come off). They are reducing certain medication that long term can damage your kidneys, I'm having a CT scan to check my lymphoma is not back. Doing blood cultures to check for HIV etc and a genetics test on my family. I told her I was worried that I would not be able to survive the wait for a transplant as my GFR is decreasing at such a rapid rate. And she said if that's the case we will put you in dialysis and that was the end of the conversation. I'm seeing her again in 2 weeks. She is meant to be a very good Dr.

[Hidden in reply to Munf]

Transplantation is a long term solution and with dialysis you are looking at a bridge from where you are now to a transplant. In my opinion not looking at dialysis options and being prepared for that is not responsible. You don't just wake up one day and start dialysis. It's a process and once your GFR drops into the teens, it's time to discuss preparations. It's really up to you to insist on having a plan in place. There is no guarantee that you will ever receive a transplant and dialysis is the only way to get there should your kidneys fail. Again, I'm not saying you will be on dialysis anytime soon, but being prepared for any eventuality is the wise path.

[Munf in reply to Hidden]

No, I understand that transplant is long term and the dialysis is to try and help until I get the transplant. Unfortunately, I have been in and out of hospital since I was 4 and in the past have had to be very assertive with drs. I had a heart transplant 21 years ago so my health is top priority to me. Thanks for response.

[curiousmind2019]

Hi Munf... my story might not apply to you but one thing I learned is that it is good to keep talking to your nephrologist and monitor GFR and symptoms closely.. and understand the modality of dialysis options available to you.. one thing you want to avoid is emergency dialysis. Both proper hemo and PD take preparation.

About 2 years ago, when my GFR was around 20, I started talking to transplant clinics to get tested and get ready to go on the waiting list. We also started going through tests with my potential live donors. But so many problems came up (indecisive donors, donors' health issues, delayed in testings, etc...), to-date I still don't have a good option for live donor. Now my GFR is 8.

Back in April, when my GFR is 12, my nephrologist started conversation with me on preparing for dialysis and scheduling for surgery. You need fistula for hemo and catheter surgery for PD. Both of which takes time for your body to recover after surgery before dialysis can start. And if you decide to go for home dialysis options, there also needs to be several weeks of training after surgery.

It's good to be prepared and know your options.

[Munf in reply to curiousmind2019]

This helps a lot, thank you. She has moved my appts from 3 monthly to monthly and I'm having bloods each with my gp. I have options for live donors ( which I know unfortunately doesn't always guarantee a kidney) if that is unsuccessful I'm going on the live donors list. My case is quite complicated with my heart history and other problems do I have a fair few drs involved to say the least lol. I know she has talked to other specialist to see if they have any ideas of what could be causing it so she's not missing anything thus the CT scan. She has also adjusted some of my medication to try and stabilize it from falling each week, and there was talk of starting Prednisolone to see if that helps but she wants to rule out other medication first. I hope you get a match soon. Fingers crossed for you.

[skaylim in reply to Munf]

Hi Munf....I would like to ask at what stage would kidney doctors move appointments from 3 months to monthly? I am on stage 4 ckd and still on 3 to 4 months appointment which i am concerned of gfr fluctuations. Thank you.

[Munf in reply to skaylim]

Hi, mine moved from 3 monthly to monthly due to my GFR falling at such a rapid rate..I am loosing a percentage each week. Also if your concerned, don't be afraid to let your consultant know , they is no harm in seeing if they can see you sooner. I have a lot of open appts with drs, I phone in if I notice a change or something concerning and they will fit me within a 2 week period (due to my health being complicated). Hope this helps.

[skaylim in reply to Munf]

Thank you. All the best to you

[Bassetmommer NKF Ambassador]

Hi Munf,

I want to add to the sage advice you've gotten to take some classes about the different types of dialysis. I would also recommend you find the local center and make a visit. Then you might connect with a social worker who can help support you through your next steps. Knowing what is involved will be very helpful so you do not have to imagine the worse and you can make informed decisions.

davita.com/education/kidney...

[Munf in reply to Bassetmommer]

Thank you! I did not know they did classes.

[04Mosher in reply to Munf]

Hi Munf,I totally agree with the former posts written to you. My husband went on PD with his GFR at 14. Whether it be home hemo, or in clinic hemo or even PD, you will need time to find out what works best for you. Hubby on PD for two almost three years. It has not kept us from traveling state side or out of country. Currently we are preparing for home hemo. I will be taking classes for his home hemo. Steve680 is correct, there is no magic number for dialysis. write down all of your questions to your Doctor. I am sure you have a very good team.

[steve680]

There's no magic number for dialysis. It will depend on your symptoms more than anything else. Symptoms include whether your nauseous, throwing up, still have an appetite (a good thing), still making urine (a good thing), etc. Some nephrologists want you to start dialysis as soon as your GFR goes below 15, while others will wait until it's absolutely necessary. Either way, you should start making plans for that day as certain types of dialysis could take several months of preparation, which will probably include some type of surgery for the dialysis access. If you go the transplantation route, you should start looking for a "live donor" soon so that you can get what's called a "pre-emptive transplant" - that means doing the transplant before you have to start dialysis. Transplantation has the best long-term success if you can get it done before dialysis.

[Munf in reply to steve680]

Thank you. I have a few people who wanted to get tested but it's not definite they will be suitable or a match, but I'm trying to think positive 🙂. I phoning my consultant on Monday just to air my concerns . Thanks for advice

[WYOAnne NKF Ambassador in reply to Munf]

I Don't think there is a magic number of when to start dialysis. It does depend on whether you are having symptoms - like vomiting, inability to eat, tired all of the time, what your labs show and you eGFR. I know several people that are somewhat stable at a GFR of 10-12 with no symptoms and have not started dialysis. You should learn about your options of peritoneal or hemo dialysis now, so when the time comes you have already made your informed decision. It all depends on the person and what they are comfortable with.

My nephrologist started me on dialysis when my GFR was still in the 20's. I was getting weekly migraines with severe vomiting. My electrolytes were really off and that was causing my migraines. Dialysis had helped me and my headaches were better. I was only on dialysis a short time when I got my transplant. I am now 19+ years post transplant and doing great.

[lowraind]

You might also want to check out Natural Kidney Journey. They are a group who work very hard to get off dialysis and/or not get so low, but rather improve gfr. I understand that you have other health issues also, but if you really want to improve your gfr, you may be able to do so by following some of their regimes.

[Munf]

Thank you. What type of regimes are they?

[Pappy58]

Hi Munf, I also joined Natural Kidney Journey on Facebook. It’s a closed group open only to kidney patients and family members. It’s a plant based diet that is very kidney friendly. There are many success stories in the group. I raised my eGFR 15 points in 3 months following the plan. There have been several who have been able to get off dialysis and have remained off by following the plan. It’s not for everyone but it might be worth looking at.

[steve680 in reply to Pappy58]

From what I understand it is sort of a very strict vegan diet with some modifications for people with severe CKD. Are there cookbooks for this type of diet?

[Pappy58 in reply to steve680]

There isn't currently a cookbook but there are files with recipes and members regularly share recipes. The group admin is currently working on a cookbook but there isn't any estimate of when it will be available.

[nick613]

Hi Munf,

When I was first diagnosed with my end stage kidney disease, I was found to be in full blown failure in the ER in 2006. I know due to my genetic kidney dysplasia (my native kidneys were always too small and never grew large enough to full size) I would have my kidneys wear out eventually from being overworked but they always figured I wouldn't have full failure until my 40's at least. Well, low and behold, it occurred when I was 22. Unfortunately, at that point in my life, I wasn't being followed super closely by my primary and it was never realized I was in failure until I was majorly symptomatic and in the ER with severe fatigue, swelling, and overall skin discoloration and felt terrible. My creatinine at that point I believe my GFR was 9. Due to my symptoms combined with how bad my other labs were (as my doctors at the time said, all my numbers were essentially incompatible with me living at that very moment) so i was very lucky and had to have emergent hemodialysis daily for a week and had a peritoneal catheter placed during that hospitalization.

I had a kidney transplant in 2010 and unfortunately, it is failing me now and my current GFR is 20, creatinine at 3.77. I am having symptoms of edema now, high blood pressure, all largely due to the nephrotic syndrome I am experiencing due to the rejection and failing. My transplant nephrologist and I have had vague conversations already about dialysis likely being back in my future potentially within the next year, possibly sooner. I already have an AV fistula from back in 2009 that was placed in case I had to switch from PD to HD because I had some issues with PD. Right now, my doctor isn't overly pushing the dialysis discussion but I am the one that continues to bring it up as to when I should start planning for this and I have been thinking about my options already. I still work full time as a RN in home health, so I have that to factor in. Ideally, I want to try peritoneal dialysis again if they feel it would be an option because I liked being to do it at home and have control over that. But if you think the conversation should be occurring, I would absolutely continue to talk about it because you definitely want to feel comfortable with your choice and plan as well.

Best of luck to you!

[Need3]

You are actually eligible for a transplant at GFR 20.