This is obviously not 'early CKD' but I've been lurking on the board for a long time.
I was diagnosed with IgA nephropathy in 2018 band my EGFR had been 21. I am in my late 40's. Male. White.
It was caught at a blood test for something else.
Since January this year it is at its lowest. It had been pretty stable up to then.
I don't have much support but it looks like the inevitable is going to happen.
Just reaching out for some support really.
Thanks for reading.
one day at a time.enjoy each sunrise and sunset.deal with things as they come.
I have now lost all appetite which is rather worrying. Have barely eaten in 3 days.
I don't know, but others might. Is this a sign it is time for dialysis?
I had that happen and I was losing weight I couldn’t afford so my neph prescribed an appetite stimulant.
Welcome to the forum, I'm glad you've joined in.
I hope you have a supportive Nephrologist. It can really help a lot.
The numbers are scary as they get lower, but it's all in how you feel. Some don't start dialysis until they are down to 5 or less.
Try to distract yourself and try not to dwell on it. Find something each day that makes you smile and do things that still make you happy. Don't let your kidney disease define you.
Wishing you all the best.
try to drink or nibble on something just so youve got a little bit in your system .hold on.
VERY IMPORTANT THAT YOU STAY HYDRATED.
I just can barely eat anything suddenly. Maybe it's just that i'm scared. Not sure.
Hopefully you got on the transplant list at efgr 20. Stay with it and you could possible skip dialysis and go straight to transplant. I've read of many who live normal lives.
15 is the transplant list number here. I have a test on a treadmill soon. All the other tests have been fine.I think that's to check for heart disease.
Not sure if you checked out the natural kidney journey site of facebook. Strict diet but seems to show results. Basically a whole foods strict diet. Just a thought.
if you’re on Facebook I recommend IgA Nephropathy Facebook group. There’s a lot of information there. I also recommend IgAN.org. They have information and a monthly support group. IgAN is very unique (I was diagnosed last year) so it’s important the info you receive is specific to our disease. Best of luck.
Is dialysis an option? What is your nephologist saying and doing?
They are prepping me for Dialysis now although I don't fancy it. Sounds horrible.
Its odd I guess, but I've always looked at dialysis as a life saver. While one can have many different serious medical problems, few have those in which there is a life saver. Chances are you'll feel better once you get started. Sounds as if you're depressed as well as having kidney issues. And, with these health issues, its so easy to get down and alone. Is it possible to get some help with this? I know you're not feeling well, but you may be able to connect with a counselor via tele-health. People usually feel a little better once they can talk over things with a counselor. Check with your insurance company to see if tele-health is available. In the meantime, I wish you the best and hope you keep us up to date on your progress with your condition. We're all in the same boat although at different stages. We hear your discomfort and pain.
Do you take a statin? I recently went from 4 to 3 by stopping statin and taking 500 mg of Vit B1 daily.
No statin
Following you… I know that “oh nooo” feeling.
I’m 51 yo female. I’ve had IgA since my early 20s … now at GFR 24 … BP gets dangerously high. It’s a sickening feeling when u stop and ponder what’s going on in the body despite the silent symptoms.
Prayer helps … religious or not. Know ur not alone.
Keep posting and let us know how you’re doing.
Will do thanks for the help
Hey, One thing about this site is that you learn something new all the time. I just looked up IgA. I have to admit I didn't know what it was. I have PKD (Polycystic kidney disease). It also is hereditary and there is no "cure" for it. And there is conflicting information on what the heck to do about it other than once it progresses to a point, you start dialysis until you get a transplant. I was able to lope along till I'm now 69 before getting to the point of looking at dialysis/transplant. The difference between my disease and yours is that yours affects people when they are younger, which sucks. You will find a lot of folks on this site who are great supporters and very knowledgeable (unlike me) about stuff and offer great resources. Like mine, I do not know if your disease would respond at all to some of the things they say on this site about addressing kidney disease, like doing an all plant low sodium, low potassium, low phosphorus diet, staying fully hydrated, and getting moderate exercise. Answer their questions as honestly as you can when they ask. Like:
Do you smoke?
Do you drink?
Do you exercise?
What do you do for a living (is it stressful)?
What family/friends support do you have?
Would you be willing to look at a plant based diet or greatly reduce meat consumption (meat contains a lot of sodium, possassium and sometimes phosphorus
Would you be willing to learn more about your kidneys and kidney disease at kidneyschool.org
All of these things are important to end stage kidney disease. Now they may NOT be helpful for your diagnosis, except in maybe the way they ask you to focus on the positives, not the negatives, which in and of itself has been very helpful to me. I've been able to stave off dialysis for almost 3 years because of the tips I've received from folks on this site. There's no guarantee it will help in your case, but it sure won't hurt to try, in addition to what your docs are saying. You will need to gather a "team" of medical folks to be on your side. Your regular primary care physician, your nephrologist, a knowlegeable renal dietitian (if one is available in your area), and if you decide on transplant, a transplant team to help get you tested and on the "list" when the time comes. And possibly a counselor who can help you "deal" with all of this---yep, they can be a necessary part of your team!
So help folks on here by telling a lot more about yourself when you have a chance. You'll find there's great support and friendship on here, friends you just haven't met yet to join on your CKD journey.
And post what you find about IgA on here so the rest of us can learn as you make discoveries, and how it differs from other kidney diseases, in regards to some of the above suggestions people will make.
Have you decided what type of Dialysis you want to try ?...I started Peritoneal Dialysis at 11GFR....that was 20 months ago ...I do my Dialysis at night while I sleep and have a great quality of life.... I feel so much better ...I feel the time spent learning to do my own home Dialysis and the inconvienence of a feww things is well worth it...
Dialysis is scary...I struggled with it for years ...waiting for the inevitable...I was so scared to start Dialysis, but then I become afraid to not start Dialysis and then I realized that Dialysis is okay and became thankful for it...
Dialysis is not the end of the World..
....Its what keeps our World from ending..
Syay positive. The body is an amazing thing and people go a long time in later stages.
Thank you all your replies. I'll tell you all a little bit about myself as requested.
I don't smoke (used to but not heavily) when diagnosed in 2018.
The odd drink. 2-3 beers a week(should cut it all out)
I recently bought an Apple watch as my fitness regime is not so great. It kicks my ass if I don't get out and do something.
I am trying to reduce my protein intake. I love meat but it needs to be cut down. I'm just trying to eat meat in my evening meal.My salt and potassium I monitor daily and I don't believe i over do that-my tests are showing normal and I check labels etc to not go over the recommended amount for my condition. I don't add salt to my food. I know all the foods that are high in potassium, salt etc.
I used to have an extremely stressful job for most of my life. I now take it easier.
I have friends but I think it's hard for everyone as they know the position I'm in. I have one sister and my father. My support network is poor I guess.
For instance I phoned my father to tell him the news but have not received a call back. Maybe today..
My apartment is kind of small so I will just gut my bedroom for Peritoneal Dialysis I think.
I have a bit of hope where my next door neighbour has offered me his kidney although I was shocked at such kindness! I haven't put all my hope on that as he might be the wrong blood type etc. I've been putting off speaking to him to try and get this moving. I will try soon hopefully. I have a transplant pack to give him.
As I say I have a sort of 'final test' where they will put me on a treadmill to check for heart disease.
The renal team have then stated I should be ok if this turns out positively.
I managed to eat something yesterday.
It's a shame it was found so late. The odd thing is I had a knee operation in 2014 which I was infected with MRSA and a 6 week stay in a hospital on an a strong antibiotic drip in order to save me. Nothing was mentioned. I was ill for a few days in 2015, I had high blood pressure then but they put it down to feeling ill. I had flu in 2016 and again nothing picked up.
My first sign of this was slight gout and a weird spot like thing on my ear.(can't remember the name now) but I didn't think too much about it. Like I say it was picked up later on a blood test. I was devastated when told at the doctors and passed out immediately lol...
I have the usual legs swelling if walking for a while, i'm urinating probably every 2 hours most of the night. Now the lack of appetite.
As we all know some days I feel worse than others.
My BP when first discovered was through the roof. It is now still high but more like 138/92 but my physician says it's too risky giving me more BP tablets.
I tell my friends i'm now EGFR 11 but they just say 'that's shit mate'. I just feel they feel awkward as they know my situation. I presume I don't have to spell it out to everyone here.
I hope that gives a bit more insight for everyone.
Thanks
Shouting out to you, half-glass -full,
You have come to a great community of wise, compassionate people - so you are among friends here.
As you know, IGA is an autoimmune disorder which can spiral if inflammation sets in. I know as I have Membraneous Neuropathy which is in the same family. With everything that you are dealing with some anxiety has probably set in - quite normal. Lean on friends and family who are positive and willing to take this journey with you. Don't look back, look forward as its all a process. Communicate with your nephrologist openly. You can live with dialysis, but don't go there until your consultant says so.
In the meantime, do the best you can to maintain your health. Drink your water, no beer, avoid foods causing inflammation as sugar, red meat and processed meats, including bacon, hot dogs, lunch meats and cured meats,snack foods, including chips, cookies, crackers and pastries, french fries and other fried foods.
Eat as clean as possible. Eggs, chicken,beans, fresh frozen vegetables. Steam, grill, roast with olive oil non-salt spices. Add pineapples, apple and blueberries, strawberries.
Key is to stop progression.
It will all work out.
Reach out at any time as one of us will always reach back.
Healing and positive thoughts.
Bet
I have been reading on here that a lady has suffered renal failure from a staph infection. As my post states I also had MRSA really bad in 20 but 14 and some strange things went on in that hospital. Is it possible that this has contributed as surely I was fine then or they would not have operated on me if I had high BP etc. There is more to the story in that hospital but the timeline seems about right. Thanks
I noticed in your bio that you were interest in "Amlodipine." I can share that I had an awful time when my first kidney doctor prescribed that for me. My legs became very swollen and unknown to me at the time, I was retaining urine. I was also prescribed hydrazaline at the time and either one or the combination sent me to the ER. I developed a severe infection from the urine retention and my GFR fell quite a few points. The day I stopped the amlodipine, the swelling in my legs was almost reduced completely. Once off both of these drugs, the infection cleared up after being ill for several weeks and taking antibiotics. I'm back on my BP meds that I took for many years and with the correct dosing, my BP pressure stays at the normal range. Because of this incident, my medical record states very clearly that I have an "allergy" to both amlodipine and hydrazaline.
I take amlodipine and have for years,when I started to swell my nephrologist split my dose 5mg in morning and 5mg in the evening, no more swelling.Guess everybody's different
Isn't that the truth that we're all different. Sometimes on this site we look for commonalities and we find them, but we also have to be careful because we have different GFRs, different medical problems, and different lab numbers. I believe I was on a much higher dose of amlodipine. All I know is that I became terrible ill and remained so for several weeks. Even the ER Doctor was surprised at how the nephologist treated me. The saddest part of this incident is that my gfr dropped and never fully recovered
Glad you're doing well with your meds.
eGFR after stone problems
Why are eGFR calculations different?
