I need encouragement : I just got to stage 3b... - Kidney Disease

Kidney Disease
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I need encouragement

MPStilwell
MPStilwell
29 Replies

I just got to stage 3b of CKD (IGA) (36 GFR). and also just became a dad for the 4th time. It is all sinking in and I am extremely depressed and anxious. I should be home with my new baby, other babies and happy wife but all I can do is cry... and I am not like that... ever... don’t think I have cried in 20 years!

I have changed my diet (plant based) and cut beer and started working out again. My GFR is 36 as of my last test in July. It was 31 in May... Can somebody tell me their GFR went up on here? I am looking at dialysis in less than 10 years at this rate.. I’m only 34 years old... who has been a stage three for a long period of time? Anybody improved?

I see people on YouTube and other sites say they raised their GFR as much as 20-30 points by eating right and exercising. Is this really possible?

Side note, I meat with my doc and dietician next week to go over labs I am doing tomorrow.

29 Replies
oldestnewest
Mr_Kidney

I was diagnosed 26 months ago at Stage 3 with a GFR of 32. Since then my GFR has been a rollercoaster ride. While the 32 was the lowest, the highest it has gone up to was 65. My average over the last 26 months is now 49, because my last labs, August 5th, showed my GFR at 57. Up is better than down but, GFR is just a snapshot of that moment. I don't get too excited or depressed at each draw. I stay the course. I still keep up all my activities, including appointments, take my medications, stay proactive and above all I keep positive. You too have the ability to be proactive and positive about your health. Start.

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MPStilwell

Thanks again Mr_Kidney! You have been so supportive on my posts! That is great about your GFR! I hope to do the same!

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SN23

Please do not despair. You are on the right track and have reached an amazing community of people. Besides there are a number of emerging treatment options as well as the possibility of the artificial kidney is on the horizon. Ten years is indeed a long time and there are initiatives currently on to disrupt the way ckd is treated. Since you have iga why don’t you register for the fda, nkf and iga foundations meet on the 19th to discuss exactly this. There will be panels of patients and doctors from Columbia university and university of Alabama currently working on breakthroughs as well as pharma reps all aiming to make the case for new treatments. You can also join the meet on webinar. Here is a link:https://kidney.secure.force.com/rc_connect__campaign_designform?id=701f1000002vFPiAAM&form=00Pf100001BUc3FEAT

Please see if this is of interest.

All the very best.

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Zazzel
Zazzel
in reply to SN23

Thanks for that info.

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MPStilwell
MPStilwell
in reply to SN23

That sounds awesome! I was looking into stem cell research last night and it seems like it is getting popular. Have not heard of anybody on here that has used it though? Have you? Any success? Will deffinitly check out that webinar so thanks!

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TheExterminator

All this does suck. I know it’s really difficult to digest whatever is going on in your life but you have to be positive and feel free to lean on your loved ones. They are there to support you.

I am 25 years old and I was diagnosed with IGAN this January with a gfr of 24. Before my diagnosis in January, I was totally unaware of all this and was enjoying my life and doing everything that a normal 25 yr olf does. I was just taking off in my career, I was very active physically, I used to workout regularly and even play soccer. Eat all kinds of shit. I never smoked or did much alcohol though. I life completely changed this year and trust me I know how it feels. I wish I was diagnosed earlier, that way I could have done it things differently.

I changed my diet completely and lost almost 15-18 kgs. Because of this I have lost alot of muscle mass and I feel tired and weak. I’m still trying to figure out how to manage things. Right now my gfr is 20 and the lowest it has hit is 18.

I am positive that I can pull this through alot longer. And thats what matters. Hope.

Enjoy the good things happening in your life. Worrying won’t make anything better.

Takecare!

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MPStilwell

Thank you. Its nice to hear from another younger person who had to change everything. Why are you losing weight though? Did you go vegan? Or are you not working out? If not, why not?

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TheExterminator

It’s sort of both actually. I used to lift heavy weights and had a lot of muscle mass. But After all this, Its not advisable to go heavy with weights. Also, Im restricted on protein so muscle recovery and growth would be difficult. Plus, I have completely cut out non veg. It sucks.

It’s difficult when all your friends go and party, eat and drink and you can’t do any of it. Things are just not the same anymore.

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MPStilwell

I hear that... Already feeling it. But at least I won't die in a couple years (I hope!).

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TheExterminator

No one’s going to die. Good thing we are in the 21st century. There are decent number of options for us.

Things would have been difficult if we were born 100 yrs back.

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lowraind

In November of 2017 I was diagnosed with ckd with an egfr of 34.4. I was able to change my diet and drink more water and increased egfr to 54.4. Have been working hard at it and requested a blood test from my pcp, since my nephrologist extended my time to see her to 12 months and I was not comfortable not having blood checked more frequently. My blood test came back with an egfr of 61.2. So, yes, it is possible to increase your egfr. It is hard work, but, it is worth it!

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Zazzel
Zazzel
in reply to lowraind

So happy for you! What an improvement.

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MPStilwell
MPStilwell
in reply to lowraind

WOW! That is supper encouraging! Thank you!

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orangecity41
orangecity41NKF Ambassador
in reply to lowraind

Agree Lowraind. Glad to hear of improvement.

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MPStilwell
MPStilwell
in reply to lowraind

Did you go vegan? What did you change in your diet? No red meat or Alcohol I assume?

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lowraind
lowraind
in reply to MPStilwell

I did not go vegan, although I do limit the amount of red meat that I eat--very little. Actually, I eat very little red meat, chicken, pork or fish. I do not smoke and have had no alcohol since November of 2017.

I do not eat potatoes, tomatoes, bananas, oranges, chocolate, bacon or other prepared meats, very little eating out. I limit sodium, protein, phosphorous and potassium. I do not eat prepared foods, cheese, very little eggs, no milk.

I have used Mathea Ford's books:

--Living with Chronic Kidney Disease--Pre Dialysis

--Create Your Own Kidney Diet Plan.

She is preparing a course called, "Understanding Kidney Test Results", which should help patients use lab results in a more intelligent way to guide their eating.

For several months I tracked the amount of sodium, protein, phosphorous and potassium that I ate. My thinking is that this is what they tell you to do when you reach stage 4, so by doing this now, I hope to not reach stage 4. I do not track in detail now because I feel that I have a good handle on what I can and cannot have.

Hope this helps!

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Jayhawker
Jayhawker
in reply to lowraind

As I've mentioned before, I have shifted to a vegetarian diet with the encouragement of my renal nurse practitioner and my nephrologist. Three weeks after I made that change I had a renal panel run. My BUN had been running consistently between 73 and 75. On July 31 it came in at 55. That's the lowest it has been since my kidneys plummeted into renal failure in January of 2017.

I'm clearly feeling much better. I'll see a renal dietician in a few weeks. At that point I hope to get some guidance to be sure I'm eating enough high value vegetarian protein on a daily basis. I'll also seek additional guidance from him or her regarding this shift.

Oh, and with the improvement in my BUN data my potassium and phosphorous were still well within the normal range. So, so far so good:) And, I'm certainly MUCH happier with this dietary approach.

Of course, this is just what I've been guided to do. It may not be appropriate for others . . . As always, be sure to check with your medical team before shifting your diet this way.

Jayhawker

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JimVanHorn

Hi MP, I need to tell you how much the diet changed my GFR and creatinin. I had high creatinin levels for many years, and two years ago my creatinin was a whopping 5.1 ! Although I am 74 years old I found out about what to eat and what not to eat. In three months the diet lowered my creatinin to 3.6. My last creatinin level was 4.1 and it goes up and down. You need to know from your doctor how much water to drink every day and follow that closely. The water amount changes according to the stage you are in and other factors. For right now watch out for too much Potassium (Gatorade) and Phosphates in health bars and canned foods. When they say water they mean water, tea, or lemon drinks. Last year I was supposed to start dialysis, but by following the diet I have not needed dialysis. I keep a list of what to eat and what not to eat in my wallet. Your diet and water drinking is your medicine now.

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MPStilwell

Diet is what everybody keeps telling me. I am very eager to see my dietician... If they ever call me back! Anybody ever heard of SouthWest Kidney? They use this company. uhlingconsulting.com

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JimVanHorn

I can tell you what I do not eat, and you can check any foods you eat for Phosphorus and Potassium on your own (read the labels). Here is the do not eat list: Potassium - no more potatoes (no chips or fries), bananas, oranges (and juice), tomatoes (and ketchup), avocados, raisins, black beans, bran, granola or nuts. No more Phosphorus - chocolate, packaged meats (Bacon, sausage, hot dogs, lunch meat, corned beef, or canned meats). These Phosphorus foods also usually have high sodium as well. Table salt is out except a little in the cooking, but nothing that tastes salty,- Frito's or chips are out. I only eat chicken, turkey or fish baked or grilled and only 3 ounces at any meal. Too much protein a one time is hard on kidneys. Many soft drinks have Phosphates like colas so I only drink lemon drinks, tea or water. Just about everything at 7-11 has Phosphates. Health bars and Ensure health drinks have Potassium because they figure you have been sweating with exercise. It would be a good idea to find out your lab test results for potassium, because you may have different needs and watch the number come down over time. I stopped beef and pork on my own. There is hidden sodium in French fried chicken and fish, because they put Sodium Bicarbonate in the crust to make the item look bigger, but not taste salty. Same thing with sodium cake and cake like cookies (sodium bicarbonate to make them raise). Eat yeast raised products. You need to figure the number of calories for yourself, this is not a weight loss diet, this is our medicine!

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lowraind

I do not know about SouthWest Kidney or how they operate. I do know that I have made this progress in spite of my nephrologist(s). Many people are not referred until they are in stage 4, so your may not be referred until then.

I requested seeing a dietician, they set me up with a diabetes dietician who knew less about ckd than I did. I was very unhappy with my 1st nephrologist, so I requested a different one. Not much of an improvement. Her philosophy is to not deprive yourself. My philosophy is that if once you reach stage 4, they limit, not only sodium and protein, but also potassium and phosphorous, so I do that now.

There is another group, Natural Kidney Journey, who is very strict with restrictions and have made great improvements, even to taking people off dialysis and raising egfr to stage 3. I am not ready to follow this regimen at this point, however, if things start to go downhill, I will. You many want to look into this group.

I have found most of the people in this group to be very common sense, supportive and helpful in my journey to improve. Do come back and share and/or ask questions as you need to.

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MPStilwell
MPStilwell
in reply to lowraind

Thank you! I requested to join the Natural Kidney Journey group on Facebook but have not been allowed in... Sent it in about 3 days ago.. REally eager to get in there! Thank you again!

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lowraind
lowraind
in reply to MPStilwell

What is their reason for not allowing you? I don't post, just lurk.

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MPStilwell
MPStilwell
in reply to lowraind

No idea! Its been radio silence!

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lowraind
lowraind
in reply to MPStilwell

But they have not refused you membership?

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MPStilwell
MPStilwell
in reply to lowraind

correct!

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Mr_Kidney

It's extremely easy to get into this community and the advice and support are the best.

Having said that I also need to say that I don't do social media, and even to lurk, I would never be anywhere near Facebook.

If you have CKD, why isn't that enough to get you "in" that group?

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orangecity41
orangecity41NKF Ambassador

I am a 78 year old male, and diagnosed with CKD at level 3b, 4 years ago. With prescribed diet and exercise routine, the progression has slowed down. My GFR too has gone up and gone down. My Doctor uses an average. There is hope and you have come to a good forum for sharing and support.

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wetface

My gfr was 54, went down 9 in 4 months. Cut out ready meals, salt, cut my beer down by half, drinking more water. Went up 9 on my last blood test.

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