Newbie. 41 CKD stage 4: In May of this year I... - Kidney Disease

Kidney Disease

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Newbie. 41 CKD stage 4

sheydreams profile image

In May of this year I learned that I have CKD, my GFR is 16, and told that I will likely be on dialysis within the next year and will need to be put on the transplant list. Suspect that I have chronic glomerulonephritis but can't be positive without a kidney biopsy, which is really difficult with no insurance. In fact having no health insurance has haulted most things at the moment, like getting the AV Fistula surgery for dialysis. But has prompted me to ask if nephrologists really can predict with any accuracy when dialysis will be needed? Please let me know if you have any wisdom.

Anemia is kicking my butt. I can hardly get through a shower. I am beyond physically tired. Thankful I work at a desk! Nephrologist ordered iron infusions, but again, no health insurance.

36 Replies

I'm in the US, Alaska. Admin assistant, no company health care. Lost marketplace insurance when I moved to Alaska as they couldn't seem to switch me over, it was a mess. Both kidneys are bad. Not sure about the transplant list. Haven't discussed it in detail. In fact, haven't discussed anything in detail. Nephrologists are overbooked here and are 3 hours away. Discovered due to extremely, hard to control high blood pressure.

SN23 profile image
SN23 in reply to sheydreams

Sorry to hear about your situation. While you await other help, please make diet changes and excercise (slowly building up your strength and excercise regimen). Davita as recommended by many in this group appears to be a good resource. Also some have suggested a free kidney class by Davita. Check if you have a center nearby and go for it. Cut down on salt. Best wishes.

sheydreams profile image
sheydreams in reply to SN23

I do need to learn more about an appropriate diet. Will check it out, thank you!

RAIDER13 profile image
RAIDER13 in reply to sheydreams

I have attended the Devita Kidney Smart class. It’s free and well worth the 2 hours!

cmaxwell78 profile image
cmaxwell78NKF Ambassador

Hi there! I hope we can be of some assistance! There is a resource page here that could be a starting point for you to talk to someone that understands:

For anemia, could you try some foods that are iron-rich? The best is liver (🤔 which I personally don't care for.) I got myself off all iron supplements with a dairy-free fruit and spinach smoothie. Spinach does have a bit of potassium in it but if you're not getting a ton of potassium elsewhere it should be fine. Iron is best absorbed when vitamin C is on board, so blend up the spinach with a bit of orange juice and frozen peach. You won't taste the spinach at all. Be sure to help your body, too, by limiting salt and drinking water.

Take care! Keep in touch!

Thank you for the tips. I have been trying to eat more if the dark greens. Nephrologist told me that oral iron wouldn't do me much good at this point, that it wouldn't be enough. No harm in trying though, right?

cmaxwell78 profile image
cmaxwell78NKF Ambassador in reply to sheydreams

Probably no harm, especially if your neph suggested it. However, good iron supplements are costly and no matter which ones I've tried, I've experienced some digestive side effects, which is why I wanted to correct my deficiency naturally. But we are all different and in different stages, so taking the advice of your physician is a great idea! Good luck!

I agree ... neph prescribed iron pills which gave me probs right away. Pills sound like an easy solution but the side effects certainly might not be for some people.

I'm sorry to hear about your situation. With a GFR of 16, you are considered to have End Stage Renal Dissase, and my understanding is this makes you automatically eligible for Medicare. Check it out.

sheydreams profile image
sheydreams in reply to Jodalena

I have an application in for Medicaid. But I'm still working and know I'm above income. But will be going in there to speak with an eligibility technician next week. Fingers crossed!

Jodalena profile image
Jodalena in reply to sheydreams

I looked back at these posts just now. I wasn't suggesting Medicaid, but Medicare. With End Stage Renal Disease you are automatically considered disabled. Medicare is for people over 65 AND disabled people. So please look into it.

sheydreams profile image
sheydreams in reply to Jodalena

Thank you

Hi sheydreams. The tiredness is from both kidney disease and lack of iron. Did the doctor put you on a special diet? With kidney disease you need to watch the levels of protein, potassium, magnesium, iron, calcium. Plus salt. Try eating foods high in protein but watch the potassium levels. There are high protein bars called the Zone Bar which they give us at dialysis and they are good. I also eat 2 Vitamin C gummies which helps put more oxygen in the blood. As for the iron I would think that buying iron tablets from the store would be cheeper and I think it works just the same. Getting it IV wise just puts it in your system faster. Take a multi-vitamin for people over 50. The vitamins & mineral percentages are a little higher. I was told by my kidney doctor that I could also take prenatal vitamins because they are also a little higher with the vitamins & minerals. Hope this helps in some way. But please verify with your doctor. As for insurance you are not the first person I've seen with no insurance. No insurance through work? Try to get medicare. Way back when President Truman made it that anyone with kidney disease automatically qualify for Medicare. I would look into that because Medicare pays 80% and look into a medicomp insurance to help cover the rest. Check out the site I believe that is the site.

Let me say one more thing. You are in charge not the doctor. If you don't understand something ask him to explain it in simple english. If you have questions write them down and bring them with you. And one last thing that will help you if you have a computer at home or keep a note book but keep a list of all tests that are done, when bloodwork was done and ask for the results, if you take medicines, and doctors you see. Keep them updated each time one happens and when you go to a doctors appointment whether they be a new doctor or one you keep seeing print off and bring them the updated info. It does make things easier on you so you are not racking your brain trying to think when this was done or so on. I hope I didn't just overload you. I've been kept here for some reason and I think this is help people. Helping people makes me happy.

Take care.

Only diet restrictions he said was to limit sodium to 2000 mg or less, per day. I will do some more reading and try to educate myself a little better. I also will pick up some iron supplements. I have some vitamin c 😁 My best friend bought me a calendar/journal to write everything down in, best advice! Being physically exhausted nearly all the time has got me frustrated.

I'm taking 7 different medications twice a day for high blood pressure, and it's still in the 160's/ 100. I was stuck in the ICU unit for 6 days while they tried to get my blood pressure down to a safe level. Top number of 140 was the goal, never did hit the goal.

Thank you for sharing your wisdom, I appreciate it.

Hi sheydreams. Glad to help. But I thought of something you may already know. Iron will make you constipated. I put a teaspoon of Marilax in my morning tea and it has helped me. I get a prescription for Polyethylene Glycol 3350NF

which is the same as Marilax. It's a big container and cheaper than buying the brand name. Especially if you have insurance to help pay for your meds. The doctor can also write a script for the iron too. But I wanted to warn you about the constipation part because I had a doctor prescribe a med but did not tell me it will constipate me and I ended up in the ER because I was inpacked. Not fun. I too have high blood pressure. I have had it all my life and that is one reason for my kidney disease. Some times on dialysis my BP will drop so low I feel sick. Plus the up and down is not for the heart. Another pill I take is Lisinopril

. It is suppose to help protect the kidney and lower you BP. You can ask your doctor about that medicine. One more thing I will pass on to you. Don't know if you are into holistic or all natural but do not take any herbs without confirming it with your doctor first because I found out that herbs and medicines don't mix and can make you really sicker. If I can be of any more help please don't hesitate to contact me and if I don't have an answer I will do my best to find it. I wish I had a magic pill to give to all people with kidney problems. Stay strong.

Unfortunately, I am allergic to Lisinopril. It worked good for taking my BP down, even for the short time I was on it.

Thanks for the heads up!!

Sorry. That Sucks. If I think of anything else I will let you know. Take care.

I can't take it either . I cough on it. I take ace called Altace 10 mg twice daily.

I have one of those little big or little jumbo notebooks that i can carry as the size makes it easy. I write down the date/where i was or the phone number i called/who i talked to/what they said.

I keep one for each year.

No little scraps of paper or where did i put ....... ???

Your best hope is Medicare. Keep trying for it. According to the law, as I understand and I'm not a lawyer, you should qualify. You may need to be pushy. I also have a form of glomerulonephritis and I have kept my GFR at just above dialysis for several years. Watch your diet and exercise even if you don't feel like it. Walking is a good exercise. I eat lots of fruit and veggies and I'm very careful to eat a low protein diet. Avoid sugar also. Never drink colas and never take NSAIDS.

Do you know if Medicare pays for transportation to dialysis ?

Sheydreams, that's tough having no coverage. Either your employer doesn't offer insurance, or the deductibles and co-pays are too high. I worked in the corporate world from 1969 to 1985. Health insurance was provided at no cost to me. Today it appears to be a "whole new world."

Hi there. I am at the same level as you with only 16% working kidney function. I am male aged 50 and had a routine blood test in April 2015 to check my cholesterol. Whilst the cholesterol was fine the test results showed my egfr to be 18%. I was referred to a renal specialist who conducted more blood tests which showed I am not diabetic and I do not have high blood pressure. He also arranged an ultrasound scan and an MRI which showed I did not have any obstructions. They have no idea what caused my CKD although I suspect it was due to a serious chest infection I had in 2014. I am pretty sure I have IgA nephropathy (IgAN).

In answer to your question about can nephrologists really can predict with any accuracy when dialysis will be needed, the simple answer is no. In my case when I was diagnosed they told me I had between 3 and 6 months before dialysis and here I am over two years later still going strong. Over the last couple of years, I have dropped down to 16% EGFR which I have been since Sept 2016.

I did not have a biopsy as the consultant told, me it was too late to do anything about my kidney disease and the risks of the biopsy outweighed the benefit which in my case would have been only to find out what caused it. Like you I get really tired but my company let me work from home 4 days per week and I just go into the office once a week which has really helped.

sheydreams profile image
sheydreams in reply to rabbit01

Thank you. There seemed to be this whirlwind of "hurry up and do this & that" and and I was having trouble understanding. I don't even see my nephrologist again till the end of November, I'm comfortable with that. Really needed to take a step back and breathe for a while.

Mid March I got real sick for a few days and haven't been the same since. By the end of May I noticed that I was having difficulty walking into the store from the parking lot. I couldn't breathe and I honestly thought I was going to pass out. Went to the doctor, I knew I had high blood pressure issues, Dr sent me to the hospital with 280/160 and I was stuck there for the next 6 days as they tried to get my blood pressure stable. I now take 7 medications for HBP and it still spikes every now and then. If I ever feel like I did back in March again I won't hesitate going to the ER, that was a pivotal moment and I recognize it now.

Have you adopted a healthier diet in efforts to stave off dialysis?

Chequers profile image
Chequers in reply to sheydreams

I understand how daunting this all is, I was told 10 years or so ago that I had CKD 3 which didn't mean much to me or anything explained just to have 6 monthly blood tests. I have had high bp struggles for several years resulting in a heart attack 5 years back.

Then just over a year ago my regular blood test was done and the doctor wanted to see me, he sent me for an ultrasound which in turn then to the nephrologist. I had then gone to CKD 4, I always try and take someone with me to my appointments as it helps with remembering what was said, and they can help you remember to ask things you don't understand. I am lucky that being in the UK I don't have the added worry of insurance. Within the year I have declined to CKD5 and off to see surgeon shortly for a catheter to be fitted in readiness for dialysis. My situation wasn't helped by having a stroke. The tiredness is now so debilitating and I have problems walking too far. Hope you can get help as soon as you can to slow down the CKD path. Take care

sheydreams profile image
sheydreams in reply to Chequers

I finally got some iron infusions. It's made a big difference and I'm able to do more now.

Hope you're doing well.

Is chronic glomerulonephritis the same as Wegener's?

A severe case of strep throat caused me to go into kidney failure. Before i could be eligible for a transplant, i needed to lose a lot of weight. While on dialysis, i was approved for gastric bypass surgery, and two months later i received a kidney from a donor I met through (,I have never felt so alive before now after the transplant.

Hi, my wife mRCC Stage 4. Her oncologist is having her drink a glass of lemonade daily. Helps with GFR, etc. Check with your oncologist first.

i just recently joined a facebook group...natural kidney journey...everyone who has ckd needs to join this group...i have been eating the way that is outlined in this group since the beginning of march...i have lost a considerable amount of weight...i have gotten off my blood pressure meds...losartain and hydradraline...and a diueritic lasix...i have been working on getting rid of my diabetic med from 2 times aday to 1/2 a day and sometimes not even that...i was a stage 4 ckd at 26 now i am stage ckd 3b at 41...i have gained 15 is similiar to vegan but you cut out processed food at all...mainly a plant based diet... water and herbal teas are fine...low potassium...low phoshorus...i feel really good...the people who started this group were able to get her husband off of dialysis...and he has been off of dialysis for 14 months...there are a couple of people onsite who have accomplished that...others are raising their gfr's dramatically...all with is a great group and i am so thankful that i found them...i mean 15 points is terrific for just a month of dedication...i am working to get to stage 2 or this is my experience with this way of eating...everyone is different but i found out i ckd not because my doctor told me but that i looked at my labs...if you are really serious in having better kidney function at least check out this group...

jmkb profile image
jmkb in reply to sharonlyn

So true!! My GFR is 12.7% (sadly it went down since last week) and I believe it was because I was eating a lot of white bread and staying away from leafy greens because that is what we are advised to do. Their diet makes sense and plant-based potassium or phosphate is not bioavailable which means the body does not absorb it to the degree that it absorbs potassium or phosphate from animal products. My goal with IgAN is to stop this raging infection and the only way to do that is to starve it and build your body's immune system back up. Natural Kidney Journey is a real gift!!

jmkb profile image
jmkb in reply to jmkb

I can recommend "Plant-Fed Kidneys" by Jennifer Moore, "Stopping Kidney Disease Food Guide" by Lee Hull and any of Brooke Goldner's books.

Meettheparents profile image
Meettheparents in reply to jmkb

I follow the. Natural Kidney Journal Facebook group also and my creatinine has gone from 1.85 to 1.03 in a year.

I am an Indian, firstly u r much better placed so don't worry on that account believe me u have better health management. Im in stage 3 ckd, i changed my diet to total veg , no meats any kind, no milk, no breads, since i have improved. lastly do not stress , have company, try yoga n meditation .

bone marrow in soup, liver helps

There was a time before I got Medicare that I didn't have medical insurance. I was able to get on a county wide program for uninsured people with low income. It was a lifesaver for me. You might check and see if your area has a similar program, though if you work your income might be too much to qualify. Best wishes for a solution.

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