So my husband has an appointment for the surgeon June 12th then we schedule surgery for the port which in turn takes 3 weeks to heal before he starts dyalisis. I know it says at GFR 15 and under needs dyalisis. He’s at 11 but does anyone know how low his # can go before they force it? I’m afraid he’s going to end up with emergency dyalisis because we are not getting this done fast enough! Thanks for the advice!
What GFR # to start Dyalisis : So my husband... - Kidney Dialysis
What GFR # to start Dyalisis
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Jmccool
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There is no hard and fast number. The nephrologist in consultation with the patient and family will make that decision. It's based on symptoms and how quick they believe the kidneys are failing. Contact the physician as soon as possible rather than wait to hear from them. If he waits too long expect a hospital stay and the possibility of other complications. The idea behind this slowing the progression is to delay dialysis and make decisions on the modality to dialyize with before the decision is forced. Best of luck.
Jmccool• in reply to
Thank you
Hi Jmccool
I know it's a scary time for both of you as it's the unknown, but feel free to consult with your renal doctor about your concerns.
I can only speak from my experience but I didn't start till I got to a gfr of 2.5. I had my fistula done for Haemo dialysis 18months prior to starting. The plan was to start at gfr of 5 but unfortunately my fistula developed an issue just before the planned date so had to have surgery to repair it. During this 10 day period I went down to 2.5 and had a pretty tough Christmas and new year dialysis free. I started 28th Jan 2019, and went to home haemo on the 28th March and self care and although it's scary after a time he will start to hopefully feel the benefits.
I'm not sure if you have decided what dialysis he is going to do as you talk about a port and both PD and HD use this term.
One thing to think about is it's not all about the gfr it's also about his potassium, sodium, calcium, and urea levels. If these are stable or under control like mine and was only having vomiting episodes once a week it was a decision to delay.
Generally here in the UK people start dialysis from 8 to 12 but as I said everyone is very individual.
Has he got any issue with fluid overload or tight chest or breathlessness?
I did 10 years at a gfr 15 but I know this isn't the norm, and involved a lot of hard work of following strict diet and fluid restriction and exercise and class my self one of the lucky ones as this helped me delay the progression, but I know others aren't as lucky to manage to delay it, and why this disease is so individual. I was actually diagnosed 19years ago at gfr 20 so I was very lucky.
I hope it all works out ok for you both.
Hello! Yes he will be doing PD at home over night. And his GFR went from 12 to 11 in just 2 months that’s why I’m so concerned. It’s such a stressful time as he can’t stand anytype of medical procedures but he’s hanging in there and accepting it I’m not allowing him to give up! He has no fluid retention or shortness of breath. He gets very dizzy and nauseous and tired all the time. He also has a ton of foam in his urine. His potassium is 3.9, sodium 139 and calcium 8.6 not sure what all Urea entails.
Obviously I'm not a medical professional so this is only from my own experience, but I suffered with nausea and vomiting when I had raised urea levels. I was given anti sickness medication and really helped so might be worth phone the renal team about it. You take it before you eat. I also found peppermint tea and ginger biscuits helped a bit especially with acid reflux.
It's a scary time for you both. Maybe he needs to speak to someone about it as sounds like he's a bit depressed. Sorry if I'm off the mark and no offense was meant.
You sound like your doing a wonderful job supporting him, but remember you need support to as hard for loved ones. My mum and dad find it hard as was diagnosed at 20 although born with it but no one knew. It's a hard disease and not many people understand how hard it is.
Keep up the good work
Charlene x
Thank you for your kind words. I feel guilty because I think of how hard it is I will be doing all of his hooking up etc. I make all of his appointments and feel bad when I get overwhelmed. I work a full time job and have a 17 and 13 year old. But would expect the same thing from him if it was me sick.
I will ask the doc for nausea meds and he is very depressed but I keep upbeat no matter what! I just have to get the dyalisis started and I know in my heart he will feel better and happy he listened!
It’s a very hard disease my thoughts and prayers for you and what you’ve been through. ❤️
My nephrologist has said the same to me about starting dialysis; if he starts me too soon I won’t feel much better but if he waits too long I’ll feel a lot better. So he tries to make this decision at a time that is essentially optimal for me.
My GFR was down to 8 and stayed there for about a year. I remember being sure that my nephrologist would immediately put me on dialysis. But he didn’t. That was from January through November of 2017x
I definitely had been really watching my diet and fluid intake. I still do, actually. When my GFRwas that low I definitely didn’t feel well.
In December of 2017 my GFR improved modestly. It moved up to 11 where it stayed until September of 2018. It then moved up to 14. In December of 2018 it came in at 20.
Now, it ranges from 18-19. So I’m still not on dialysis. I’m hoping that the nephrologists who have looked at my case are right and it will be another 2-3 years before I’ll need to start dialysis. My electrolytes are in the normal range. I do have severe anemia as a side effect. I follow a low potassium diet (1800 mg daily), and a low sodium diet. I am on medication for the anemia but no other medication. I’m not taking s diuretic nor blood pressure medication. So, overall, I’m holding my own against this fairly well right now.
But lots of work; lots of focus. And this takes lots of work with and from your husband’s renal team. I learned very early in this journey to both do exactly what my nephrologist tells me to go AND to visit with him or his nurse about anything I’m experiencing or anything that’s concerning me. There are no trivial or stupid questions. And they need to know everything your husband is experiencing as far as symptoms go.
This is definitely such a high stress situation waiting for the inevitability of dialysis.
Matj
Thank you for your reply and I am going to read to him your reply. He has to help me here too as much as I’m putting into helping him he’s still not eating right his fluids have changed. Maybe he’s waiting for me to change his diet I guess I need to figure it out. Just overwhelmed...
The dietary restrictions, particularly the low potassium, are definitely a big challenge. Have you found the Davita web site? It contains about 800 renal friendly recipes with the nutritional information for a serving of each. The dietitians who post these recipes also provide suggestions for how to modify the recipe more for specific renal diet restrictions or other requirements.
I spent a lot of time reading through those recipes and the additional modification suggestions provided with each. I’d do this while waiting for my numerous doctors appointments🐶 Eventually I found myself comfortable modifying favorite family recipes to make them renal friendly. I’d upload my modified family recipe into my HealthWatch360 app. That app calculates the nutritional information for a serving of each recipe. It’s free and available for both android and iPhone smartphones. But I really think it took me close to 3-4 months focusing on this food stuff before I felt really secure. So initially I used recipes from the Davita web site for all my cooking.
Nevertheless, your husband does need to get involved too. I think the most common thread from those participating in this forum is the importance of active participation in our medical care—I consider myself to be a member of my medical team. I’ve got to do what my doctors say; but I’ve also got to let them know, with accurate data and detail, how the treatment plan is working.
But I’ve also got to live my life in a manner where my CKD doesn’t run my life. It’s a part of my daily life, but it’s only a part of it.
I’m a university special education professor. I run a state-wide grant that provides tuition funding for teachers coming to graduate school to add a special education endorsement to their teaching licenses. They also pursue master’s degrees. I also serve as a major advisor for several doctoral students. I just stepped down from a the associate dean position in my unit on campus specifically so I’ll have more time for my CKD. But I’m not planning to stop working. I truly love my job and working with graduate students. Any strengths I had before I developed CKD are still a part of who I am. I really haven’t changed in any significant way.
I’ve learned to prioritize the things that need to be done daily. I’ve learned to say no to nonessential things. And I’ve learned to rely on others for some help. I do all of this so I can continue to do the job I love effectively while managing CKD as a single person with no children and no family left alive.
Your husband can do this. He just needs to wrap his brain around this. He has CKD. He’ll have to make accommodations just like I have; just like all of us who participate in this forum have. But he’ll find he can do the things that matter most to him. He’ll just have to learn to prioritize. And you’ll be there to support him as he learns to live with CKD.
It will be fine, really.
Marj
Thank you I will read this to him too. He thinks his life is over as he knows it and I tell him over and over it’s not true. It’s just an adjustment we have to make. But yes 100% he has to get on board and accept this and do what’s right. I will definitely be on Davita website today looking at recipes. Also will download that app on my I phone. Thank you so much for all the encouragement.
The other recipe set I’m looking at closely right now can be found at the link below. I’m not sure the nutritional information per serving is as accurate as what you’ll see in the Davita web site, but I’m wanting to try some new recipes this summer. I’m going to enter the recipes from the web site below that I like into my HealthWatch360 app to double check the nutritional information. And I’m still relying on my dietician’s guidance to “choose wisely” from these new recipes. (some may not be optimal for me specifically even though they’re fine for others with CKD.)
Nevertheless, there are quite s few new recipes I am exploring on the website below:
nwkidney.org/living-with-ki...
You may have to copy and paste that link into your internet browser to open it. These recipes are posted on the Northwest Kidney Center website.
Marj
I didn't know your eGFR had gotten down to 8 back in 2017. I was a t 9.6 for my labs three months ago. Had new labs last week and will find results tomorrow. You are my hero the way you've managed to pull your numbers up. But with PKD, not sure I will be able to do that. You said you "watched your diet and fluid intake". Do you mean you drank more water or less? I'm still struggling to know how much water to drink at this level.
PKD is really tough. That wasn’t my causal factor so our kidney journeys will be different.
With my diet I have managed my type II diabetes without medication for years now. I was only on medication for the first three months after they found the type II as I pulled my A1C in check. No meds after that…
However, I’ve adhered rigorously to both a low sodium (1000 .mg daily) and low fat diet. For quite some time I was also on a low potassium restriction (2000 mg daily). The potassium is no longer an issue though.
More recently I’ve converted to a modified vegetarian diet. Vegetarian protein is easier for our kidneys to handle according to more recent research.
Fluid has been a major issue for me—dehydration. I suspect the improvement in my renal data relates to better and more consistent hydration. My newer nephrologist removed the fluid restrictions I’d been prescribed. Each of the three a sudden, Deaver e plummets in my renal function since June 2013 were preceded by severe dehydration lasting 3-5 weeks. So, my lived experience with all of this points to dehydration as a major factor… My current nephrologist essentially said as much in my last appointment as well.
Jayhawker
Ahh, ok. Thanks for explaining that. I wasn't sure why you were restricting fluids in that original post. Boy you've been at this for a while.
If the patient needs to start ASAP dialyzing. They usually insert a permacath. This can be used immediately. Which can be removed after his surgical access has healed and given the okay by his vascular team.
I was very much in the same situation your husband was in about 2 months ago. My GFR had been 15 in November and it was 11 in February. My doctor ordered another round a blood test 6 weeks later fully expecting that given the rate of progression, my numbers would end up somewhere below 10. As a result, I went to see the dialysis surgeon as well as the dialysis center and went through orientation.
In my follow up blood test in April, my GFR was back up to 15. I'm doing another round of blood tests next week, and so I should have a sense of which direction things are headed. Either they will continue to remain stable, which buys be more time, or if they continue a dramatic downward trend below 10. In that case, I will likely start on dialysis.
The protocol I have been instructed to follow is that when things look like they're getting closer to requiring dialysis, my blood tests move to every 6 weeks rather than every 3 months period of course there's things I can do in the interim around weight exercise diet and the like.
I would also tell you that there is no one magic number at which people need to start dialysis. Some people don't feel very good at 15. Even at 11, I felt relatively good. I'm still not retaining water and my blood levels are good, so the doctor's even talked about going as low as 5 with me.
I am not a doctor, but I want to put your mind at rest that I don't believe your husband will end up on emergency dialysis assuming that his doctor follows similar protocols for the ones my doctor has suggested. That said, I would suggest your husband gets mentally prepared for the potential that he may need dialysis at some point. It was all a very intellectual xrcise until I went to orientation. And realized the change that I would face when I start dialysis, particularly since I intend to work following either a transplant or dialysis, Lord willing.
Best wishes.
Thank you for your response. It’s nice to talk to people who know what we are dealing with and the thought of him doing emergency Dyalisis scares us. How did you get your number to go back up? I think if I can get him to eat better it would help he’s only 52 and he plans on still working full time thats why we decided to do the home PD at night. So praying things go ok for us and my thoughts are with you and everyone going through this life changing disease!
💙
I largely gave up caffeine, soda, and alcohol, drank lots of water, lost a few pounds, and got serious about sodium. I have not been as disciplined since the last good blood test. Will tell you what my numbers are when I test next week.
Starting dialysis can be compelling if symptoms are occurring like fluid retention. Once the blood pressure is out of control or the labs become abnormal with levels of GFR below 10 may require initiation of dialysis. As patient, no one can force you to do dialysis. The question for doctor is what are my numbers associated with my labs and what am I feeling physically? Good luck as caregiver!
Thank you! He has not had fluid retention as of yet. He does feel bad and tired and nauseous. I can see him get sicker but more those symptoms than anything. We will do blood work again next week. I am praying his numbers stayed the same or improved somehow.
💙
I wonder if the nausea would improve with better dietary control. And the tiredness could be related to anemia. If so, that’s treatable. They are likely checking for anemia with your husband’s labs. But you and your husband should definitely talk with his nephrologist about both symptoms.
I always share symptoms and then ask if any of them are treatable. If they are treatable I then ask what my nephrologist needs me to do🐶
Marj
Thank you I do know His iron was ok but his mother, grandmother and aunt had it. Only one survived was his aunt with a transplant and he refused a transplant already. He has high blood pressure controlled by medicine and they tested him for something with his thyroid that has to do with causing brittle bones. He also has RA I hurt for him the poor man inherited every bad trait his family had. 😔
KidneyCoachNKF Ambassador
Firstly Dialysis is a choice. No one can force it on anyone so let that concern disappear alltogether. Beginning dialysis is really a joint decision and based on factors of symptoms, blood values, blood pressure and fluid retention. Some people begin at GFR of 12 while other feel pretty good until GFR around 4. Best wishes. Blessings
My Fritz' Nephrologist is having the fistula started and the steps toward transplant started even though he is not in need yet. He feels it takes so much time to go through all these processes that we should have everything in place before it reaches that point and when it does we are ready. The transplant part will have to wait another year to start though because he had cancer surgery two years ago and needs to wait another year. It was contained and no return. It was caught really early. We have hardly had a day since March 7th that we haven't been to a doctor or had blood drawn. His blood work is improving though. This appears to have all started with him taking Entresto. It does affect the kidneys. He was on it for just under two years. I am hoping and praying his numbers continue to improve being off that medicine. His nephrologist has also switched all other meds that are known kidney stressers. It is a very stressful time and I try hard to keep the stress to a minimum because I feel that doesn't help the situation either.
My Fritz started the process of building a fistula in his upper arm. His GFR has improved from 20 to 24. The Nephrologist wanted the fistula built now for eventual need. All of this arose after being on Entresto for 18 months or so. He had tender kidneys to begin with. He has to wait another year to get on the transplant list. His potassium is back to normal. Really normal!! His sodium levels have done well. His BUN was super high, but has come down 38 points. I am just concerned they will push dialysis too soon. He has absolutely none of the symptoms he is supposed to have. No nausea, no vomiting, no itching, no swelling. It is just his numbers. I am seriously thinking the longer he is off the Entresto and keeps eating right we might conquer this.
Pat and Fritz,
If you don’t mind telling me, how high was his BUN before it came down?
I just saw my new nephrologist on Thursday, May 30th for my first appointment. He was concerned about my BUN too. Like Fritz I’m not presenting many, or even any, of the more classic symptoms. He did find Hyperparathyroidism when he ran labs. That may be causing the majority of the symptoms I’m presenting. He has started me on a medication to treat that so I’m thinking I’ll know within 7-10 days whether my primary issue has been this elevated parathyroid condition or not.
This stuff definitely gets pretty complex pretty fast. It can be difficult to make solid, informed medical decisions. But I think if this parathyroid medication doesn’t resolve or greatly improve most of my symptoms my nephrologist and I will both know that my BUN is high enough to be causing this havoc. At that point I expect we’ll move forward with PD Dialysis even though my GFR is still relatively high at15-16.
Marj
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