NOt starting dialysis at GFR 14 stage 4 kidney failure

[cheslsa]

Recently slipped into Stage 4 kidney failure GFR 14. I don't feel sick or any worse than what a 68 yr old woman should be experiencing. Has anyone remained at Stage 4 GFR 14 for any amount of time before starting dialysis? Any responses would be appreicated. On HBP meds. MEtropolo, Statin

[DaveThebe]

Just to correct you Gfr 14 is stage 5.

[cheslsa in reply to DaveThebe]

Thank you on the correction: Brain isn't working. Running a bit scared here. Dr wants me to go have blood typing in case I am able to find a kidney from relative or at least to have possible donors ready.... or to prepare myself for dialysis. I am baffled as I feel as I am not feeling ill any more for worse, I do have many of sym of stage 5 but I am a tough cookie. Lack of sleep is the worse...everything else I can handle. NOt overweight. Big question I guess is when Can my body tell me its time for dialysis or transplant? I am a breast cancer survivor and have experienced what it feels to be really sick... I just feel I can handle this stage 5 until I start to really feel physically sick... which I don't at this point. Mostly lack of energy and lack of libido ...disturbed sleep.... any suggestions? Would be most grateful. I am very careful with my diet.Thanks

[Hidden in reply to cheslsa]

Depending on the type of modality for dialysis you plan on using it may take time for the catheter, fistula or graff to be ready to work. I wouldn't want to gamble on a transplant before you have to do dialysis. Have you spoken to your nephrologist about the surgery needed for whatever method you chose and how long it will take for the method to become ready? You may have time but you should at least explore those options and get some sort of timeline from the doctor. Remember at Stage 5 you may you are only operating on kidneys that are working at 14% of capacity. If you went to work how effective would you be if you were only about to complete about 14% of your workload?

I've met some folks who waited too long and had to have an emergency catheter placed and it involved a longer stay in the hospital. If you haven't already spoken to your doctor, this would be an excellent time to ask questions and make a decision.

[cheslsa in reply to Hidden]

Thank You for your response. I am not too keen on Dialysis ( would only have it if I can't find a kidney match). I have seen what dialysis affect patient over time. THey just do not look very healthy... color is gone and so many sadly are lethargic. I worked in assisted living for over twenty years and watched residents return from dialysis so depleted and worn out and all they could do is sleep till the next day. IT was so sad and heart breaking to see they had no energy or will to participate in life...had limitations for travel and activities. That I believe frightens me the most. All residents who went for dialysis were depressed. I witnessed many personality changes and in lifestyle changes. There were quite a few lifestyle modifications that have to be made to undergo dialysis. Indeed, I believe I do need a time line for planning my options.. I will be going to see a new nephrologist in Cornel Weil Hospital NYC to discuss planning as soon as I can secure an appointment. At this point I believe I am having a difficult time with the psychological implications for a different way of life whether through dialysis or with a kidney transplant. I have always been a caregiver as a social worker and I feel terrible having to reveal my need for a kidney from relatives and or friends. Again, thank you for reminding me of they 14% function I am functioning on. Just because we continue our regular daily schedule, attending our families and participate in all kinds of functions..... I have the propensity to be the person providing the help to other not the other way around. while perhaps ignoring what is happening to my body and the physical manifestations related with stage 5. Being fiercely independent is difficult when you now realize you will have to ask for help from others around you to live as healthy as possible for as long as possible. Thanks for centering me.

[Hidden in reply to cheslsa]

I'm going to assume based on your comments that the patients you've seen going and coming from dialysis were dialyzing in-center and not using PD or HHD.

I'm in Stage 3 with a GFR average over thirty-two months of 51. When I was diagnosed my GFR was 32. I made the decision to learn all I could to slow the progression of CKD and so far have done well.

Once that was done, I began to look into dialysis modalities. I wanted to make sure that should the time come to where I needed it I would already have made the decision with a lot less stress in the mix.

I found a book called. Help! I Need Dialysis. It isn't expensive and you can find it on AMAZON at a good price. I've read it three times and marked it up quite a bit.

Through my reading and research as well as speaking to others on dialysis, I've learned that the more frequently you dialyze the more you can maintain your lifestyle and enjoy the things you did prior to dialysis.

I looked at PD, both manually and with a cycler. I decided to keep looking. After reading the book, I decided on HHD. For me, it makes the most sense and I can do it and maintain the lifestyle I enjoy.

I spoke to my nephrologist and he agreed, that should the time come when I have to prepare for dialysis, being able to do HHD five or six days a week for a few hours each day would be a good fit for me, as I will be able to travel in my RV and dialyze in the evenings and maintain the lifestyle I like. Transplantation is not an option for me

Reading the book gave me a solid understanding of my options and speaking to folks on HHD showed me how folks doing it were able to maintain more control over their life.

Best of luck.

[cheslsa in reply to Hidden]

THANK YOU for sharing and for the information on Book titled Help. I shall run to Barnes and Nobles and see if I can find in stock otherwise I will order on line. Congrats your your successful management of your present stage. I will try my best to have a better mindset and perhaps this book will help. Best of Luck and for your insight on this subject.

[Hidden in reply to cheslsa]

You really shouldn't be making decisions based on how you "feel" when the scientific evidence has revealed that your condition is quite serious.

At this stage things could come to a head very quickly, possibly within hours or even minutes.

As a former medical professional I saw a lot of cases where people put off treatments and it had dire consequences.

Someday I might have to face dialysis. Fortunately I've known people who were on dialysis and adjusted to their new reality quite well. That gives me hope.

Please be careful.

[Pawu in reply to cheslsa]

Please check Dadvice TV-Kidney health coach on Youtube. He had stage 5 and reversed it to stage 3 in 7 months I think, he gave me inspiration im stage 3 and diabetic for 30yrs. Take care

[Carillon]

You have every reason to want to delay dialysis. It’s a horrible life sentence no matter what others say. I am GFR 14 and feel fine. If I can’t sleep I take 2 Tylenol PM. Avoid salt, don’t drink too much water, meditate, daily exercise with stretching, sleep, go about your life. If and when you have a transplant you will be 100% better off than that horrible medieval dialysis.

[Allank in reply to Carillon]

thanks - sleep issues - what is PM in If I can’t sleep I take 2 Tylenol PM.

[Lilly234]

Hello. I was in Stage 4 for at least one year. My doctor kept on me to start dialysis ASAP. I held off because I did not want to. I did some research and finally decided I should go ahead with it. I was getting a little nausea while procrastinating. I have incorporated certain foods into my diet, which are good for the kidneys and I bounce from Stage 4 to Stage 5 and back to Stage 4. I am still a little confused but go to dialysis 3 times a week. I did try playing God with my CKD and stopped dialysis for 2 weeks. I started to feel good, had more energy, my legs were stronger, was eating the super foods and then started getting sick. I am now back to dialysis and will remain there until I can get a kidney. I am now 71 and was probably a little older than you when I started dropping. Take care of yourself and I will be thinking about you.

[Tissybell]

I had a catheter for PD . Then it was 3 years before I got to the 12-14 GFR range, and thought I was fine. But once I have to start having labs weekly, I decided it was time for dialysis before I became too sick and ended up in the hospital. After I started dialysis I went from using a nightime cycler with alarms disrupting sleep. I was able to drop down to one manual bag a day. I read and drink coffee while I drain in the AM, and TV at night while I fill. I actually was more tired then I thought before dialysis, because I have more energy and look healthy with dialysis. I do have to stay of top of my iron stores. Monthly labs and doctor visit at the kidney clinic 1-2 weeks later helps me iron iron-booster meds as needed . O do not feel wiped out on PD like patients after clinic HD.. I am glad I went through diaysise training whiie still fairly well and alert. You can feel sick overnight as GFR drops. You might even go quite a while after getting a catheter before you need it I found it easier to accept with this st step at+ a time emmoyionally. Do continue with your research

[KidneyCoach NKF Ambassador]

Pre-emptive transplants to delay or stop dialysis IS the preferred and recommended treatment for those reaching stage 5. This is why transplant workup is approved to begin at GFR of 20%. My sister received a deceased donor transplant at GFR of 17. She had her workup and listed at 20% and was called back from vacation for her transplant. Lasted many years.

The book kidney refers you to was written by 2 dear friends of mine. You may want to check out this blog by one of the authors of the book if you decide to pass on transplant. He is a renowned and highly regarded Australian nephrologist.

mydialysischoice.org/

homedialysis.org/news-and-r...

Here is a link to purchase the book referred. They are only $6 with free shipping.

store.mei.org/help-i-need-d...

Lastly check out kidneyschool.org for great educational modules.

BTW I have been on dialysis 18 years, have traveled to D.C., Virginia, Florida, Texas, Minnesota, Indiana, Missouri, Kansas, Illinois, Arkansas, Georgia, North Carolina, Alabama and have plans to get to Washington, Oregon, Utah, Idaho and Wyoming within the year. I have traveled by air and car. I have done a lot of advocacy work with the NKF, AAKP, AKF, HDU and more. I've welcomed 10 grandchildren into the world, lived on a farm and lived my life well. If you want to chat, send me a private message.

You can do this. Blessings

[RonZone in reply to KidneyCoach]

Hey, just saw this post and ordered the book. Thanks for the reference. We can use all that we can get.

[vertish]

I have had kidney disease for 12 years and I am now at GFR 10. I have worked out regular at the gym and stuck to the renal diet I had a few day surgery's along the way and the antibiotics was hard on GFR. I have an embedded catheter placed in and that will give me some time. I have read many Kidney books and they are all much the same. There is a new one out and it's an exception. It costs 8 dollars, It's common sense and it will chase away the Boggy man. The Book: "Help, I Need Dialysis"

[JOJOSMITH123]

My mother was 78 years old when diagnosed stage 5. Her gfr was 15. She was placed on PD dialysis and continued for 6 months. Her lab results were coming back ok so they said she could have a break. It's now been 18 months without dialysis. She has a gfr of 7 and has so symptoms other than weakness. Her lungs are clear, she has no fluid retention and her blood pressure is stable. She is a mystery but for now the consultant is happy for her to carry on the way she is. She could end up back on it but she is enjoying the break.

[Jayhawker in reply to JOJOSMITH123]

That’s interesting; thanks for sharing this with us.

I’ve been in Stage V with eGFR that has ranged some. It was as low as 8-9. It then improved to 12-13. For the past year and 4 months it has ranged from 14-16. I have converted to a modified vegetarian diet.

I have severe anemia which is under treatment. About 8 years ago I developed secondary hyperpararhyroidism although my calcium has remained in check. This second side effect of my CKD is also under medical treatment.

I am not on dialysis yet. I will use PD dialysis first. I’ve also been approved for a transplant and have been waitlisted since January 10, 2020. They said they expected there would be a deceased donor kidney for me in 2 to 2 1/2 years. I live in an area of the nation where wait times are shorter plus my blood type is a little easier to match.

I have labs run once a month right now while we’re dealing with this pandemic. Normally they had me get labs once every 3 months because my renal data has been stable and quiet.

I have few side effects other than those I’ve mentioned. I still pass urine and have minimal fluid retention. I take no blood pressure medication. In fact other the the medication for my anemia and the medication for my parathyroid condition, I only take sodium bicarbonate daily for my kidneys. I am on a medication for a hypoparathyroid problem as well a slightly elevated cholesterol problem. I’m 66 years old.

My eGFR suddenly plummeted into renal failure (eGFR 8-9) in early January of 2017. So I’ve been in renal failure for 3 years and 3 months. And yet I am not yet on dialysis. So, each of our stories are unique. It’s critical that we each work closely with our nephrologists and the other doctors on our medical teams. I’ve learned as much as possible now. I do what my medical team members tell me to do. I hope for the best even as I plan for the worst.

I’m single with no family left living. I have a group of friends who are here for me, my adopted family🐶 I am still working and plan to do so into my early 70s. I haven’t given up independence; instead, I’ve learned the importance of others. We each need others in our lives. It’s humbling to ask for help. However, I find that those I ask for help are truly happy to help me; they seem to be honored that I ask them for help. I try to rotate through my adopted family members so as not to over burden any one person. And I absolutely continue to do everything I can for myself. That’s good for me.

And finally, I grew up with a father who had CKD. I was ultimately one of his HHD care partners. He didn’t have a good experience with HHD specifically because he had so many other very serious medical problems. However, those who are relatively healthy otherwise should, and most do, feel relatively well on dialysis. I’d suspect that the elderly clients the person who started this post saw while working as a medical care person were more like my father; they had numerous other serious medical conditions. I’ve visited with LOTS of people on dialysis, primarily PD dialysis, who feel well. They are still working. Some are even participating in distance bike rides, etc. I have selected PD dialysis for myself for the following reasons:

1. PD is easier on cardiovascular systems (according to my nephrologist)

2. PD retains more renal function longer (according to my nephrologist)

3. I can do PD dialysis independently in my home (I’m single and have no care partner.)

4. I can do PD daily in my home which is closer to what my kidneys do normally

5. By far the majority of persons with CKD who have used both HD and PD dialysis prefer PD over HD

6. If PD doesn’t work for me I can switch to HD

I believe strongly that unless there are medical reasons to dictate the dialysis modality choice for the patient that this decision MUST be the patient’s decision. (That’s my independence streak alive and well in spite of my renal failure.)

Jayhawker

[JOJOSMITH123 in reply to Jayhawker]

Thanks for your reply...keep fighting the fight and keeping your independence. My mother's doctor believes that my mother's positive mind and can do attitude has helped in keeping her away from dialysis for so long. It was supposed to have been a 2 week break. She will embrace what ever comes her way but I definitely think PD will be her choice again. She started manual and the had the overnight cycler. I wish you all the best and everyone with CKD regardless of what stage. God Bless you all..Stay safe xx

[RhenDutchess123]

Dialysis is not the End of the World..

.....It is what stops Our World from Ending...