Forum/help pls specifically for IgA Nephropathy ?

Allymorris

I'm desperately sorry to hear of your sons prognosis. I have been through the whole process of having dialysis and had a transplant 6 months ago. The only comfort I could offer you is that once your son has been transplanted there would almost be no limits to what he could do careerwise. At 22 he's got the whole world in front of him. If he does indeed face the prospect of dialysis then I could discuss with you and your son. For someone so young I'm always keen to offer words of encouragement. This may or may not give you some comfort but he does have age in his corner! If he does face the prospect of dialysis I'm happy to give some insight to this.

Feel free to message for a chat.

Wishing you and your son all the very best

Stevie

I am really sorry to hear that your son has such a problem!  You need to get Consultant Urologist advice ASAP, not just to diagnose what is happening but to advise on how to prevent further damage.  It is unusual for a sudden event like this to happen to a young person.  I would have thought that he might have had an infection that went untreated - young people just dont bother- or else he has been taking something that damages kidneys!  The sort of thing I am thinking about is overuse of anti inflammatories like Ibuprofen, or possibly          antibiotics prescribed for some other recent problem.  If I give an example, my oldest son now 40 was exceptionally fit, but developed pneumonia.  He was given Ciprofloxacin to which he reacted extremely badly, could barely walk, pains everywhere, mental upsets, and 2 years on he still has severe shoulder pain and pain in his feet. He seemed to age 15 years in 2 weeks!

On the positive side it is quite possible to function well with only 30% kidney efficiency.  What he will have to try to avoid is any further deterioration, which is why it is important to discover the cause of the problem.  He will find that there are endless drugs and antibiotics that must be avoided, and he needs to have a kidney friendly diet.  It is very important to keep hydrated, but it is essential to stay as fit as possible, so exercise sensibly.  I would just find out if he has been overdoing gym style fitness, and not drinking enough  - any chance that he was doing this trying to get fit for the police?  If so some recovery of function is possible with careful management.

Good luck!

KenR

Im so sorry for your news. Did the Nephrologist actually state dialysis and transplant?

I thought some IgA kidney diseases were treatable.

I really hope he can have some treatment and all not so bad.

Did they mention any names of the type of IgA it could be?

Please keep us informed x

https://www.kidneyresearchuk.org/health-information/ckd-information/igan?gclid=CjwKCAjwlIvXBRBjEiwATWAQIqdTyzJ9il42lTlN0jcI7wuMelY91RorFfZ4k72CvVzab8VVqs2BnBoCiioQAvD_BwE

Not if the link will come out but good info.

There are no words we can say that will make you feel better or change your son's condition.  I am not a believer to accept all you read on the internet but I looked it up and found some hopeful indications.  It is said that from the time it is "first found" until the need for transplant or dialysis is usually 20 years.  I hope this is the case for your son. Also because a lot of new medical discoveries can be found in 10, 15, 20 years.  But also consider your son's age.  He is a good candidate for a transplant.  You are under medical care now.  Yes it feels his life and future are over.  They are NOT.  They are dramatically changed.  With time the shock will lessen and you will spend your time on addressing it medically as best can be done.  The specialist was not insensitive.  They were honest.  You can not fix this situation by hiding from it, but need to hear the truth and face it aggressively with your medical team.  The biopsy will show if the disease is benign.  Lets hope so.  From there you will be presented with your medical options and prognosis.  It is difficult and hard, but it must be faced one day at a time.  First the biopsy and then lets see what they advise.  While there is currently no cure for this disease there are medications which help slow its progression.  Time will give you options and in that time you can learn about transplantation.  We are all here to listen.

His GP thinks he might have developed this condition from an attack if Henloch Shoenlein Purpura when he was 3 years old. But no-one ever told me back then it could have affected his kidneys. I was told it was a blood disorder that would right itself. Had I known about potential kidney damage from HSP I would have made sure he was screened as he grew up. 

I think he is more upset right now at being told the Police will retract the job offer they’ve made him. They have kept it open pending the results of the biopsy. I will however challenge any rejection as at the moment he is in good health, no pain, no tiredness, eats healthily, exercises and his BP is controlled. So I can see no reason why they should reject him on a “what if” basis ?  Surely that would be disability discrimination. 

Allymorris,

I can't imagine the shock you and your son are experiencing with this unexpected news. I agree with what you are hearing from others; knowledge is power. You and your son will need to work closely with his medical team to learn as much about his renal situation as possible.

I'm not a physician and so won't give advice of a medical nature. Rather, I would encourage you and your son to first proactively find and add to his medical team the right set of specialists. Second, push his medical team to explore his renal situation thoroughly; keep asking questions until you both understand exactly what is happening, what can be done to address it, and expected treatment outcomes.

Now, for a personal story:

My father had chronic kidney disease from his late teens or early twenties onward. I never knew him when he did not have CKD. His was hypertension related. He was not anle to serve in the armed forces due to his CKD. But he was able to work, marry, raise a family, put all three of his children through college, and welcome four grand children into the world. He was a music teacher. He also played trumpet with the Stan  Kenton big band (in the United Tates). 

So my father lived a very normal, full life. He did this for nearly 40 years before his renal function deteriorated to the point that he was put on dialysis. He (and my mother) did exactly what his doctors told him to do. He took his medications. Made various lifestyle changes (e.g., dietary changes and exercise). Otherwise he went on about his life. He loved playing in various jazz groups. He travelled a lot with them. He also loved teaching high school music. Frankly, he loved life. He had a great sense of humor. For him and my family his CKD was our normal. We ate a healthy, low salt diet because he had to. As time passed we began seeing low potassium food options at dinner for dad. My mother adjusted dad's diet as needed with ease as his CKD progressed. It was never a big deal. It was just something that was fine to support his renal function.

His life was certainly not over. Some doors were closed for him due to the CKD but others opened. He often said that he would never have had the opportunity to play in the Stan Kenton Band had he not had CKD.

Your sons life is definitely not over but it has changed direction some. Please stay in touch and let us know how things are going. The mental battle that comes with CKD can be a real challenge!

Marj

Hi. I was diagnosed with iga 6 months ago. Same thing as your son in that i thought i was healthy.

My thoughts are with you.

I'd suggest fish oil, good diet, and blood pressure meds (ace inhibitor). If he can keep these factors under control then he can delay further deteoration. If he's 22 then he should focus on low salt, lower protein diet. However he should be careful not to overdo it and lose too much weight. Maintaining low blood pressure is key.

I'd also suggest asking (politely) whether there are any friends or family willing to be a live donor. I appreciate this is difficult but a pre emptiive transplant without dialysis would be ideal.

Finally I'd suggest getting psychological support for you and yur son, if needed. I'd never considered this but it helped immensely.

Thinking of you. It does get better.

stage 5 kidney with AgI biosopy confirmation.

started Enzyme treatment with stem cell. $15,000, but my husband is trying anything to stay of dialysis and try to,kill this AgI.

In hospital now getting blood transfusion, you loose blood , hard to breath and lose of energy, we believe this was brought on by trauma. He had a neck injury 2 yrs ago.

will keep you posted . Enzyme treatment is 30 days, basicially chemo. Shake and Bake. Not very nice to,go through. But it is worth a try. Better than peritonitis dialysis.

google Dr. Ben Johnson. This is experimental. Nothing kills this AgI.

Deborah

this disease is really not treatable but we are trying. My husband is refusing dyalysis at this time because he is eating well and keeping his food down, creatine levels are 8.5

hemis a walking mirical. At ER now just r devise 3 liters of blood, very anemic.

know your health and make some of your own choices.

Deborah

think like this, when he was born he is normal until now. it means something has been changed over time during his life and that change makes his kidney worse. Check with him to see what are changes, such as food, vitamins, habit. and try to stop these changes one by one or all at once. My friend stop using vitamin and eat gluten free food. and his kidney got improved. we used to think vitamin is good, but everything has two sides.

Hi Ally

I really do feel for you and your son. I was diagnosed with Iga Nephropathy in 2015. It seems I have autoimmune which caused the Iga. I was also devastated and could not stop crying. The biopsy sounds scary but he will be ok. My EGFR is 34. I am under a super consultant in Coventry. My EGFR has always Been in the 30"s and apart from itchy legs and tiredness sometimes, I look and feel fine. I take lasarton and VD daily and see consultant 6 monthly. Bloods done every 3 months. I know I will need dialysis one day I'm not going to lie, it scares the hell out of me.

I hope you find the help and support you need and stay brave x