IgA Nephropathy...

[v1ckyr]

Hi All,

not sure if this is the right area to post this, but husband was yesterday diagnosed with IgA nephropathy, and told to go onto a low sodium diet, and ACE inhibitor to be taken. i am trying to find out a bit more about the condition from people going through it, so can know what may happen down the line. Little information from the consultant at this stage, just pointed us to the NKF website.

Thanks for reading.

[marysmum]

Hi, I was diagnosed 11 years ago with IGA Nephropathy. I was put on ACE inhibitors and water tablets (it was swollen ankles that lead to my diagnosis). I was told restrict salt in my diet and eat healthily but not to make any major changes, that they don't know what caused it, there is not cure and my kidneys would fail but couldn't give me a time frame for it. I remember feeling scared and frustrated. As time went on my kidneys did deteriate steadily and my meds were adjusted accordingly. Apart from being tired all the time I didn't have any big problem until my kidneys failed in 2009 and I went on Dialysis. I'll just add that I was pregnant at the time and kidney failure was a risk. Had I not become pregnant then it is probable that I'd be free from dialysis now as my decline in kidney function was very slow. I'm now on Peritoneal Dialysis at home and it works well for me and my family. If you or your husband have any questions I'd be happy to help in any way I can. I've never really understood my kidney problem but I've lived with it for quite a while now and can definately relate the practical day to day side of things. Best wishes x

[v1ckyr in reply to marysmum]

HI Marysmum, that you for taking the time to reply. We are getting used tot he idea now, and concentrating on keeping my husband well. only time will tell whether he will need the dialysis, but its good to hear that people are living with the condition and treatment regime. Thanks you for your offer, best wishes,

Vicky

[jolawn]

Hi

I was diagnosed 14 years ago. I had a GFR of about 45. I have tried various complimentary techniques. The best have been psychotherapy and acupuncture. I believe that my kidney disease was caused by fear. I was nervous most of my life. Therefore the therapy. I also think that its important not to imagine that your kidneys will fail. Every time I found myself fantasising about it I cancelled the thought and filled the space with love and light. And keep on doing this. I know that sounds strange but I believe it has kept me well. Take all the medication but believe that your kidneys will stay the same. My recent GFR was 38. I am 59 years old. I hope it goes well for your husband.

[v1ckyr in reply to jolawn]

Hello thanks for the reply. Now the shock is wearing off, we are concentrating on keeping my husband well and remaining positive like you say. thank you for taking the time to reply, Vicky

[Chin69]

Hi I was diagnosed with igaN 12 yrs ago at age GFR 36 now 20 so the decline is slow, I take ACE and this week came off the water tablets for a while as my blood pressure went low and I was dizzy, it's good though I hate going to the loo all the time, I was so thirsty, I also get iron infusions when my iron and hemoglobin are low, which gives me lots more energy, I also take an iron supplement in between when it feels low ie I'm back to being fatigued. Although I was told I would not be able to absorb the iron that way, it does work. I guess it depends on the person. Don't just lower salt intake, as GPs say totally cut it out, cook all your own food and don't add any, use herbs and spices, it makes a real difference, get plenty of exercise if you can, lift light weights to gain muscle strength it helps with cramps, also the hormones released are uplifting. At your stage eat healthy but don't be to fix sated your blood test will give you insight as to how to adjust, for instance if your potassium levels get high or your skin is itchy. Then cut down on nuts and dried fruit fizzy drinks chocolate. You can type in google- list of foods containing potassium and print off a PDF and stick that up somewhere. Sorry that this is so long have lots to say, take care and as the guy above said don't worry be positive life goes on enjoy things.

[hangingon1955]

Hi, I was diagnosed with igaN About a year ago. I'm 58yrs old My GFR was at 31 at that time. I went on a strict diet and exercise. I try to follow my Dr.'s instructions. Which I think I do pretty well. I just got my 3rd reading from my blood work about two weeks ago. Now it's at 23. How fast does it drop that you know others been through this same thing? I hate the thought of going on dialysis. How do you cope knowing that what's going to happen when you have to make a choice of going on dialysis or not? Please help me..... Thanks

[Jeremiah26]

Hi, very sorry to hear about your husband, it must have been a great shock to you both. I was diagnosed with IgA Nephropathy 5 months ago with a GFR of 29, I am male, 46 years old. It was very worrying at first as my GFR went rapidly down to 21 over the space of a few weeks and I was told by the consultant that I would need dialysis/transplant within the year, sooner if I became ill with flu or gastroenteritis. I was on Amlodopine (ACE inhibitor), water tablets and Atorvastatin - luckily these seem to stabilise things and my GFR crept back up, so I was put on Ramipril aswell. The second time I saw my consultant he told me that I may never need a transplant/dialysis as my GFR had gone up to 26! Basically, they don't know and noone can know. You can only get a vague guess at when it's going to get to stage 5 (ie GFR <15) by predicting the trend over a number of months/years if you're lucky - but it can often happen much quicker as some of the posts here testify. I am over the shock of knowing that I have an incurable condition but still feel a resentment towards my GP, whom I saw on 8 occasions in the preceding 18 months complaining every time of headaches and being told that it was my posture when driving/at computer etc! I have had to change my lifestyle quite considerably - no drinking alcohol, no smoking (not a bad thing!) and don't go out in the evenings nearly as much as I used to - that's something I need to keep an eye on so I don't cut myself off from friends. I find that the biggest challenge is fatigue and lack of energy. Things can be great for a week, i can almost feel normal and then it hits me and I'm in bed all day or in bed soon after getting home from work - difficult with 3 kids aged 8,7 & 2. My diet is pretty good but advice I've been given has been pretty vague - you can ask to see the dietician in the kidney dept at hospital and they should be able to help but the main thing to avoid is salt/sodium. My short term aim is to find some form of exercise - Tai Chi, Yoga are meant to be good - but haven't had the energy to get there! I'd be happy to talk with your husband if he wants to - it's a terrible shock to the system at first but hopefully things will calm down with medication and time. I wish you both all the best.