25 year old diagnosed with IgA Nephrotic disease

Hello Sabrinadawn,

Please do not be scared. Start to be amazed at how wonderful medical advances are that, even with failing kidneys, you now have a chance to live a normal, happy life that you could not have had a few years ago and, in many places in the world would not have now.

First, write down all the things you want to ask and do not be afraid to ask to be given the time to discuss your fears. There are wonderful, well trained, nephrology nurses in all renal units who can help you come to terms with the treatment you will need. They will give you the confidence to move forward. You will not be treated as a 'patient' but as partner in planning your own progress.

Second: Ask to see a dietitian. With the results of your blood tests he/she will explain why some foods are beneficial and some not so good for you. They have diet sheets and lists that are helpful and can recommend food supplements that most of us have never heard of.

Third: read the leaflets stating possible side effects of any medications that you are given. Many people blame the way they feel on the kidney failure when it could be the medicines. If one medicine makes you feel bad, there are always alternatives that don't.

The renal unit that I attend has a list of volunteers who are at the end of the'phone to support people like us who are anxious about their condiions. Ask someone where you can find such people.

Be really thankful that you have found out about your problem while it can be treated and before it ruins the rest of your health - and that we have the NHS to look after us.

Good luck. Keep smiling.

Hi there,

I have same diease and I am 32 yrs old. I really dont know the reason how I got this. I am stage 4 and assuming that my doctor will put me on dialysis very soon that sacres me. It is really hard to fight back when you are so young. 

Just keep an eye what you are taking to eat. Avoid all the processed food and watch for content of Sodium, Potassium and protein. Avoid all the dairy products.

If you know the cause of this diease, either BP or Diabetes. Monitor it regularly. If you are on early stage just drink lots of water.

Hope you feel better mentally...Take Care...

I am in the same situation. I have been in hospital for 10 days now after going to my GP two weeks ago. I seem to have IgAN and in quite a critical state. My kidney function is just 25%. I am 21 year old female and I was just normally going to uni. I can't believe this is happening too.

Hi,

Its scary to be told your kidneys are going to pack in and you need dialysis and a transplant, even when you know its coming and you have oicked which one you want.  Don't change anything unless you are told, as already mentioned when appropriate you will be referred to a dietician.  Do not alter your diet apart from no salt and deffinately no lo salt until you are told it is dangerous.  If you alter your potassium intake whan you don't have a problem you can make it to low this is as life threatening as it being too high, like phosphate do not alter then intake of this unless told this to is dangerous.  I am on peritoneal dialysis (PD) which I do myself each night at home.  Once you get used to it its fine and I will be having a live doner transplant froom my friend soon.  One thing you need to be aware of with IGA is when you have a transplant because you have the IGA it can come back and attack your transplanted kidney (not what you want to hear I know but it is a fact of what can happen) you will have immune surpressent drugs that will help this will be explained to you as you travel along your journey.  Never take ibuprofen or any anti inflamitory drugs poorly kidneys don't like them, keep your BP under strict control and don't take any over the counter medications with out checking (as it can interfere with BP meds and damage kidneys) and you should be able to keep control of your kidney function.  Oh and there are no magic seeds or weeds or drinks that you can take that will cure you  let us know if you need anything else.

Take Care

hi, 

my son is 20 & also diagnosed with same back in Oct.  He has been on Prednisolone and suffered awful side effects.  now we are being given choice of 2 drugs to try to suppress his immune system, cyclophosphamide or mycophenolate.  We are very scared as we were  not told how bad he would suffer from Prenisolone steroid & are worried about side effects of more drugs.  Has anyone else taken any of these?

He has cut down potassium following dietician advise which has helped a bit but we have no idea how long the kidneys will last as they are currently 30%.  

 

Hello

I just wanted to say I understand our circumstances are different as I only had one diseased kidney but at 22 years old Ive just had my kidney removed (no transplant) after CKD since I was born and I wish id not got as scared as I did. Id been estimated a few months to a year til my kidney became useless and i was terrified even though I still have one mostly healthy one so i understand how hard this must be for you. Its 4 weeks since my surgery and yes its painful and sore but I was out of hospital after 2 days and looking to be back at work in a couple more weeks. The thought of this big thing happening to your body is petrifying whether its removing one kidney or transplanting one or both kidneys but your future will be so bright with no disease. To wake up with no backache and no fatigue and to feel alive is fantastic and so so worth the pain youll feel for a few weeks. I wish you all the best. Keep your chin up and fight it!

I was diagnosed with IgA nephropathy when I was 11 years old. i didn't think that it was normal for somebody to pee coffee color. so the doctors diagnosed me with the IgA Nephropathy. my blood pressure is always high. the doctor had put me on 40 mg of lisinopril because i am not over weight. i had to go to the emergancy room because i had a stroke level BP it was 227/139 and the doctor send me straight to the emergancy room. now i am having sharp pain in my back and i am spelling a lot of protein in my urine. the doctors don't know why my BP is high and well not stay down. i am not over weight, very active, and i am watching my sodium because they told me that i can only have 1000 mg a day. i eat mostly fuit and vegetables. Now it seems like my kidneys have gotten worse and the doctors are still figuring things out on why i am having the symptoms. i am hoping that the doctors well figure things out. they did tell me to monitor my BP at home regularly and it tends to be high. i been needing to go to the bathroom more often than usual. gone to the doctors for it and i still have not got the results back to see why i am having the go to the bathroom more often than usual.

i am hoping you be healthy because i had this problem since i was five years old. and i am also from Russia, i am hoping that this well get better for me over time.

My son, 20, diagnosed with IgA Nephropathy also.  Stage 3B.  I was/am scared for him.  Was focused on worse case scenarios.  But, worrying doesn't help, and may make situation worse (higher blood pressure, depression?).  Better to try to remain positive,  hope the treatments will help the kidneys stablize, and focus on what you can control -- diet, exercise, enjoying today and the people in your life, and looking for the beauty in the world.  We saw a renal nutritionist, and she told us:  Avoid all processed foods (high sodium, phosphates), limit protein intake (to about the size of your palm), eat lots of vegetables.  Our Nephrologist said, take Omega3 fish oil and cut out Gluten -- there's no definitive studies that this is beneficial, but can't hurt, and may help.  We asked about taking supplements, and the nutritionist said she recommends avoiding them because sometimes don't really know what's in them, nor how they may interact with the meds. Exercise is good.  My son started on Prednisone and a low dosage of Lisinopril, and has been experiencing some of the side effects of Prednisone (weight gain, acne, some swelling in joints), but we're awaiting recent blood test results and next doctor visit to see where we are, and where we go next.  We recently took the opportunity to go on a family road trip to the canyon area, south western U.S. We did a lot of hiking and worked-out at hotel gyms together, and while he is mildly anemic and previously told us he often felt tired, he said he felt a lot better after getting some exercise.  Everyone commented on how amazing the views were during our hikes, and, I think, truly valued sharing the time and new experiences together.  Spend time with friends/loved ones.  Keep positive. Focus on the good things and the things you can control.  Best of luck.

I forgot to mention that it was of some relief to me to hear other people who have had to go on dialysis say that it was not that bad, and that they could do it at home in the evenings.  Also, while I am remaining hopeful that my son's kidneys can be stablized with treatment, I am looking into what is needed to qualify as a donor match (hopefully I will be a good match, but, if not, then I will expand the search) -- this is a process  I can have some control over, and no reason to wait!

Hi, i am in exactly the same situation at the moment, i have IGA Nephropathy and am in Stage 3 with a GFR of 58 but function is reducing at the mo. I think the aim of the treatment is to preserve GFR and prevent worsening symptoms, my blood pressure meds have been doubled and some days i feel awful with back pain and constant headaches, at doctors tomorrow for further water specimen. Big hugs, take it easy and try to remain positive