I started having kidney problems in 2015. My fistula was put in in December of 2015. It is now about 5 years later and I am not yet on dialysis. My last GFR was 16. I was on the kidney transplant list at Mayo and at Nebraska Medicine. Because of a recurrence of pancreatic cancer, my name has been removed from both lists. I go back to Rochester in October for another PET/MRI scan. If the tumors are growing I will have to have chemo. I have been told that because of my kidney problems, I will have to have dialysis 1 hour after every chemo treatment.
I just finished watching an interview about supplements and kidney disease and I learned something I wanted to pass on, the endocrinologist being interviewed said that Flax Seed is extremely high in phosphorus and can be very dangerous to kidney patients. A big concern was that most people think it is a food so they forget to tell their doctors about it. Who knew?
To be clear - not on dialysis YET but with eGFR dropping from 37 to 20 (shingles?) in 3 months, it's time to consider port placement. Even if labs improve at least I'll be ready. I'm 75 and could not get on a transplant list so if renal failure does the inevitable progression it will be dialysis and die later as opposed to no dialysis and die sooner. Sorry to be Debbie Downer but I'm a realist. And I've read nightmare stories by people my age on dialysis - nausea, extreme fatigue (I'm ALREADY queasy a lot and with fibromyalgia fatigue is always with me.)
Does your hair really fall out?
Do your fingernails really turn black and fall off?
Do dialysis patients really lose fingers and/or toes or - worse - have to suffer limb amputations?
Do you really have to be on a machine 4 hours a day three days a week?
Do you really need at least a half a day to recover from a dialysis session then feel well another half day before starting to feel awful again the evening before dialysis?
How long can 70+ year olds with CHF, COPD, and well-managed diabetes expect dialysis to work before the law of diminshing returns begins to apply?
How badly does quality of life deteriorate and how fast?
Is the nanomesh available? Is it affordable? Does it work? Where can it be done?
@miker8888, Hi! The main things I've learned include not giving up, each person is different, and you can follow a meat-free and dairy-free diet and be happy with it.
When I was first diagnosed I immediately put myself on a kidney-friendly diet even before I saw a nephrologist and the day she suggested a vegetarian diet I became an almost-vegan (I made up that phrase, LOL) because even though I immediately stopped eating meat and dairy I still get protein from free-range eggs. My kidney function improved markedly after that for months.
But when I developed shingles nearly two years ago my GFR went all the way down to 8! End stage! We talked about Hospice and end-of-life care.
I guess it wasn't yet time for that, though, because about 5 months of hemodialysis, along with excellent medical management and my staying on the renal diet I developed, gave my remaining partial kidney enough rest such that I was able to stop dialysis nearly a year ago and my eGFR has climbed (slowly!) back up to 20. Not as peppy as I was before the shingles but I won't complain. This improvement is temporary but today is a good day and I'll worry about tomorrow after it gets here.
You might want to ask one of the admins how to access some of my former posts about nutrition. And my recipe collections are here somewhere. If you use any of my recipes, be aware they are small portions. Also, since manufacturers change ingredients and amounts so often, read the label before you buy anything.
I watch calories (but not carbs even though I am diabetic) and watch phosphorus (when I can find out phosphorus amounts for certain foods from the USDA) as well as potassium, sodium and protein, Recently I have started becoming more aware of high-magnesium foods and limiiting those - leafy greens, for one thing, and certain over-the-counter medications.
I can't say enough about the skills my primary care physician and my nephrologist have - good medical management is one reason I'm still here so I hope your docs are wonderful as well.
Also, these support groups at Mayo's are wonderful.
There are several helpful kidney diet websites available, too, including DaVita.
Good luck stabilizing and perhaps even improving your filtration rate and I'm glad you are participating here. We care!
Your kind and informative words are greatly appreciated. Like you, I try not to worry about until I know what it is to worry about. Right now, my hemoglobin and hematocrit are about 10% below lower range limit but stabilized over last 2 years with resultant minor fatigue. I am long past transplant eligibility zone my goal is to "last" as long as I can. I am leaning to peritoneal dialysis, if able to, to remain as active. My current diet is low salt. My Phosphorous, K and Sodium are all mid rangeland I avoid high K foods. Not vegan, but will have to cut back on my current amount of non plant protein. I will be looking for some of those recipes.
Your kind and informative words are greatly appreciated. Like you, I try not to worry about until I know what it is to worry about. Right now, my hemoglobin and hematocrit are about 10% below lower range limit but stabilized over last 2 years with resultant minor fatigue. I am long past transplant eligibility zone my goal is to "last" as long as I can. I am leaning to peritoneal dialysis, if able to, to remain as active. My current diet is low salt. My Phosphorous, K and Sodium are all mid rangeland I avoid high K foods. Not vegan, but will have to cut back on my current amount of non plant protein. I will be looking for some of those recipes.
Like you, I am awaiting my catheter and will start dialysis immediately after. I am 66, still active, still employed, grandfather to 10 [1 more coming]— and I can’t picture how my life will be on the big D or if there is any life to be had at all. Is there any encouragement out there for someone like me?
Like you, I am awaiting my catheter and will start dialysis immediately after. I am 66, still active, still employed, grandfather to 10 [1 more coming]— and I can’t picture how my life will be on the big D or if there is any life to be had at all. Is there any encouragement out there for someone like me?
@stevewyatt and @miker8888 Like you both, I am close to dialysis, and planning to go for peritoneal. I am also an active cancer patient, doing chemo regimen for multiple myeloma. My last labwork shows an eGFR of 14%. We live in a fairly rural area, and tracking down just how this will work is a challenge. BTW chemo plus dialysis goes easier if I can do peritoneal. My husband found this website by Fresenius Kidney Care. Not affiliated, not a patient, but wow! is there a lot of great information here. I spent a long time just reading! I think you may find some hints and tips to help you along the way. Let me know whst you think, if you will, please? https://www.freseniuskidneycare.com/
Ginger
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Sending you well wishes and healing light, Marvin. Keep us posted.
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5 ReactionsHi all,
I just finished watching an interview about supplements and kidney disease and I learned something I wanted to pass on, the endocrinologist being interviewed said that Flax Seed is extremely high in phosphorus and can be very dangerous to kidney patients. A big concern was that most people think it is a food so they forget to tell their doctors about it. Who knew?
@jolinda
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4 ReactionsYour unanswered questions have invited a follow up query. I am near 83 and with a GFR approaching stage 5 I would love to hear what you have learned.
@miker8888, Hi! The main things I've learned include not giving up, each person is different, and you can follow a meat-free and dairy-free diet and be happy with it.
When I was first diagnosed I immediately put myself on a kidney-friendly diet even before I saw a nephrologist and the day she suggested a vegetarian diet I became an almost-vegan (I made up that phrase, LOL) because even though I immediately stopped eating meat and dairy I still get protein from free-range eggs. My kidney function improved markedly after that for months.
But when I developed shingles nearly two years ago my GFR went all the way down to 8! End stage! We talked about Hospice and end-of-life care.
I guess it wasn't yet time for that, though, because about 5 months of hemodialysis, along with excellent medical management and my staying on the renal diet I developed, gave my remaining partial kidney enough rest such that I was able to stop dialysis nearly a year ago and my eGFR has climbed (slowly!) back up to 20. Not as peppy as I was before the shingles but I won't complain. This improvement is temporary but today is a good day and I'll worry about tomorrow after it gets here.
You might want to ask one of the admins how to access some of my former posts about nutrition. And my recipe collections are here somewhere. If you use any of my recipes, be aware they are small portions. Also, since manufacturers change ingredients and amounts so often, read the label before you buy anything.
I watch calories (but not carbs even though I am diabetic) and watch phosphorus (when I can find out phosphorus amounts for certain foods from the USDA) as well as potassium, sodium and protein, Recently I have started becoming more aware of high-magnesium foods and limiiting those - leafy greens, for one thing, and certain over-the-counter medications.
I can't say enough about the skills my primary care physician and my nephrologist have - good medical management is one reason I'm still here so I hope your docs are wonderful as well.
Also, these support groups at Mayo's are wonderful.
There are several helpful kidney diet websites available, too, including DaVita.
Good luck stabilizing and perhaps even improving your filtration rate and I'm glad you are participating here. We care!
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Helpful -
Hug
6 ReactionsYour kind and informative words are greatly appreciated. Like you, I try not to worry about until I know what it is to worry about. Right now, my hemoglobin and hematocrit are about 10% below lower range limit but stabilized over last 2 years with resultant minor fatigue. I am long past transplant eligibility zone my goal is to "last" as long as I can. I am leaning to peritoneal dialysis, if able to, to remain as active. My current diet is low salt. My Phosphorous, K and Sodium are all mid rangeland I avoid high K foods. Not vegan, but will have to cut back on my current amount of non plant protein. I will be looking for some of those recipes.
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4 Reactions@miker8888, here is the discussion I believe @kamama94 was referring to - https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/
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4 ReactionsLike you, I am awaiting my catheter and will start dialysis immediately after. I am 66, still active, still employed, grandfather to 10 [1 more coming]— and I can’t picture how my life will be on the big D or if there is any life to be had at all. Is there any encouragement out there for someone like me?
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Hug
2 Reactions@stevewyatt and @miker8888 Like you both, I am close to dialysis, and planning to go for peritoneal. I am also an active cancer patient, doing chemo regimen for multiple myeloma. My last labwork shows an eGFR of 14%. We live in a fairly rural area, and tracking down just how this will work is a challenge. BTW chemo plus dialysis goes easier if I can do peritoneal. My husband found this website by Fresenius Kidney Care. Not affiliated, not a patient, but wow! is there a lot of great information here. I spent a long time just reading! I think you may find some hints and tips to help you along the way. Let me know whst you think, if you will, please?
https://www.freseniuskidneycare.com/
Ginger
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3 ReactionsThank you for the link…I’ll take a look! I got my catheter in this morning, tomorrow I start the Big D.
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2 Reactions@stevewyatt, I will be thinking of you.
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