IGA NEPHROTHY

My husband has IGa and sadly it was not caught until he was at end-stage renal failure. He experienced similar symptoms and in the end, his high blood pressure was the cause of his headaches and lack of appetite. Being diagnosed with kidney disease is hard it does feel that everything changes so fast! Prednisone is not without side effects as well, so that is also hard. He was on a high dosage at first and it left him feeling anxious, sleepless, and just not himself. He is now 1 year (celebrated Feb 23rd) post-transplant and is still on low doses of prednisone to prevent the IGa from attacking his new kidney. He is on 5mg and tolerates that fairly well. What dosages are you on and what are the next steps for you?

I'm Glad to hear he's doing well. I started at 40mg now I'm on 30mg will keep going lower each month. Right now just waiting on them to get me on kidney waiting list and I have already put it out there I need a kidney bestie 😊

Yes, that is a high dosage and I am sure you are feeling those effects strongly. My husband started on 60mg and felt very "uncomfortable" (to put it mildly). His largest issue was with sleeping, he found that exercising in the evening and having a good wind-down period before bed helped a little bit. They took him off the prednisone once they determined that he was end-stage and there was no way his kidneys could get worse before his transplant. There was essentially no reason to check the IgA as the damage was done. The 5mg he is on now is super manageable for him. His sister ended up being a perfect match so she gave the beautiful gift of her spare to him and he is doing fantastic! Everyone is different of course, but I am sure you will be on prednisone post-transplant to manage the IgA. As I stated, we just celebrated his one-year kidneyversary and there have been no rejection signs and no signs that the IgA has done damage to the new kidney. I wish the best for you on this journey and please feel free to reach out if you have any more thoughts or questions. I wish you the best!

That's awesome!! I'm so happy he's doing well 💓 it's just the beginning for me. I do have such a hard time with neuropathy pain as well and horrible hot flashing lol. Drives me nuts and the sleeping at night is awful. But I know there's a light at end of tunnel. One question I have . Can you tell me what was the process they did to find out the donor was a match and when they say match is it the blood that has to match ?

It is a PROCESS! lol Blood type is only one of the steps for a match. They will also look at tissue types for antigens. There is a score they provide you for a match, I believe 8 was the highest, but please do not quote me on that as it has been a while now. There are several markers they look at to establish a matching score. It does not have to be a perfect match, but obviously that reduces complications. If you receive a deceased donor, that scoring is a bit different.

First, willing donors reached out to the transplant team to apply. The first screen established a blood type match and ruled out any huge red flags for donation (high blood pressure, history of kidney issues, etc..). The donor has their own "transplant team" to ensure that their best interests are at heart. The team will ensure mental and physical fitness and make every effort to eliminate risks to the donor. They want to be sure beyond a doubt that there are no health issues that would put them at risk later on with one kidney. Tests include cancer screenings such as blood work, mammogram, and colonoscopy. An ultrasound to look at the kidneys, arteries, and veins, Heart health tests, and many other labs. With the family history, his sister even underwent DNA screening.

I remember this process feeling slow, we were always waiting for some sort of test. My best piece of advice to you is this, research your transplant center very carefully. Once you are on the path of evaluations insurance can prohibit you from getting a second opinion. Ensure you do research and find a team you are 100% comfortable with because you will be on that team for the rest of your life. Find a great place that feels like they have your best interest at heart.

I'll keep you posted my friend thank you for all your info I really appreciate you ❤️

@kidneybestie1, I want to welcome you to Connect and am thrilled to see that you have already made a friend and are finding support from @roxylulu22 who has first hand knowledge and experience about IGA nephropathy.
She has provided information as a patient that is so very important for you to hear. And I know that your questions are welcomed, and I look forward to others joining this discussion.

I don't have experience with the same condition, however I am a liver and kidney transplant recipient. But as a mentor, I try to share information that I think might be informative. Here is information about Living Kidney Donation:
https://connect.mayoclinic.org/blog/transplant/tab/resource-36/#ch-tab-navigation
.
How did you find Mayo Connect? Are you looking to be transplanted at MAyo?

Thank you! I found it on portal.

I also have IGA Nepropathy. I was diagnosed probably 20 years ago and had a slow decline. I had a kidney transplant last October, so am almost 5 months post transplant.
Once I could qualify, I did my research and found a donor which was my daughter. Yes, it was a pretty long and very thorough process to go through to qualify, and then you have to qualify every year.
As someone said to me, the whole process ahead of the transplant is more work and nerve racking than the transplant. I would have to agree, but was very fortunate that I was quite healthy going in to surgery. I had never had to go on dialysis which made everything so much easier.
I am on 5 mg of Prednisone. The sleeping is getting better, I have to say the side effects of Tacrolimus and Mycophenolate have not been the easiest. I have a shaky feeling all over, and am losing my hair. My care team is working on adjusting meds, but hate to complain too much, because I am so thankful I had a wonderful donor and feel so much better. (So much more energy)
Good luck to you on this journey, and I am always here if I can help in anyway.

The other thing I forgot to mention yesterday was the paired donor program. If you have someone that is willing to donate but is not a match for you, they can enter the paired donation program and be matched with someone else and it opens the pool to find a match for you! Your transplant team will explain.