Recently diagnosed with iga nephropathy (Berger's disease) and in the middle of deciding what treatments will be helpful. Lots of anxiety about death, limitations to lifestyle in general, worry about the unknown.
Looking for a support group in or near Charlotte NC.
Hi Uke_it_up,
Welcome! Great place with many knowledgeable and supportive people. Several who have IGA and myself who also has MN an autoimmune kidney disorder, so you are not alone.
First of all, your feelings are very normal! When patients here the words, "kidney disease" it is not only a shock but a knot in the stomach. The most important thing is that the IGA Nephropathy was caught, you are under a nephrologists care and moving forward to get it under control and prevent progression. It is a process which takes time.
Key items are to establish communication between you and your doctors as well as insist that they communicate with each other; a team!
Print out your labs prior to appointments and check off areas of concern and asking for an explanation to questions as you and your doctor are looking at the same page @ the same time. I often list prior results next to the new ones.
Ask a family member to join you at your appointment if possible to scribe for you. A small notebook with bullet point notes is a reference point for next appointments and serves as a refresher when you leave the office.
Diet is essential; water, low sodium, low protein, fresh or frozen fruits and vegetables and avoiding foods which cause inflammation. Potassium and Phosphorous are also important. Discuss this with your doctor based on your labs. He/ she may also refer you to a renal dietician who can further assist you in setting up kidney-friendly meals which are both healthy and appealing to you. Remember that each patient is different with different needs.
The NKF has a world of information on their sites.
I am attaching one of their links which includes phone numbers.
I have also googled support groups for kidney patients and type in your state and see what comes up near you.
In the meantime, go one day at a time; stay positive as outcomes are not all bleak.
Feel free to reach out to one of us at any time as someone will always reach back!
Sending good thoughts!
Bet
Hi there,
Bet gave you lots of great advice. I have a IGAN as well. Diagnosed in Oct 2016. I felt very much as you did upon learning the information. Although I have a very good nephrologist, the only guidelines I was given were to eat less red meat and sodium, start watching my blood pressure ( which by the way I did develop high blood pressure), and possibly take fish oil. I have been able to raise my GFR from the 50s to the 70s through diet.
Since IGAN is autoimmune based, keeping inflammation at bay is important. Adding a source of Omega 3 to your diet is important and reducing inflammatory Omega 6 which is found in oils, processed and fast foods. If you don’t know The reason for your IGAN and whether or not it is aggressive, talk to your doctor about it. If you make changes now in your eating and lifestyle you can change or slow the rate of progression.
There are several studies being done with new drugs specifically for IGAN. Check out the site igan.org/ There are several IGAN exclusive Facebook groups you can join where you can learn more. If you can find a good nutritionist that understands autoimmune based kidney disease, start going to one now. The sooner you cut out inflammatory foods, the more quickly you will get things under control. There are lots of different approaches that people take and there have been successes in all of them. Some opt for large doses of fish oil, taking ace inhibitors to control bp and proteinuria, going plant based modified vegan ( there’s a group with lots of success called Natural kidney journey on FB), doing a plant based plus low amount of meat diet, no oils dairy or gluten approach ( gluten and nightshades have been known to cause inflammation), or a mix of all of these. Each person has to decide what they can do according to their needs and other physical issues such as heart disease, food allergies etc. everyone is different and I’ve noticed there is not a one size fits all plan, but learning about your labs, asking lots of questions, learning as much as you can about nutrition and staying positive, reducing stress and getting fresh air and exercise are the key to success. Although statistics vary, I just read an article that said only 25% go on to dialysis. If it does get to the point of dialysis, there are many people who live productive happy lives. This is not a death sentence.
I have learned a lot about myself in this journey and in an odd way, I am very thankful as it has forced me to face issues I would have otherwise ignored. This is now, the new normal you and you can do this!
Hi. I'm not near from you I'm from Manila. But anything you need , prayer, someone to talk to I'm here for you. I was diagnosed w end stage renal disease I'm 42 years old and have a 4 year old and a 7 month old. I got a second opinion and it wasn't that bad. But my gfr is 35% and I'm trying to improve it. I understand how you feel in fact I'm still depressed about it. But I take one day at a time.
Thanks, it is great to have so many helpful and positive responses just a day after I posted this.
How did you go about getting a second opinion? There is the one main nephrologist (in an office that has several) I've been working with these past few months, but many other people involved in interpreting ultrasound, getting and interpreting biopsy, etc. Is the purpose of a 2nd opinion to get more options on treatments to proceed with?
I did ask about anything I could do myself and there wasn't mention of diet other than adding fish oil and decreasing sodium intake.
Actually where I am from doctors are known to be very negative and try to keep you seeing them as long as possible, hence more business for them. I found a doctor who was just a little more positive ( because I went to a random doctor who said I could die in 5 years and said that there was very little that could be done) . Yet still , my current doctor is not prescribing any thing except a diet low in everything. Sodium, potassium protein etc. I refuse to believe that this is the only solution. I am focused on finding the right medical team for me that can give me answers. I also got ideas from this site hearing about gfr improvement and a significant decrease in creatinine levels. My current doctor told me that there is no way my creatinine will decrease but I am not believing his diagnosis as many people here got their kidney function to improve. Though I am worried this site and the people here encourage me a lot.
Ravi,
Where there is light, there is hope.
If you are not satisfied with your present doctor, as the patient, you have the right to seek another opinion even if you go beyond your homeland to get them.
Ask questions, bring a copy of your labs and diet and advocate for your health!
We all stand strong behind you with good thoughts and prayers.
Please reach out again!
Bet
Uke_ it _ up,
You are absolutely entitled to a second opinion - I know that I sought one just before my biopsy in 2017.
Your PCP may be able to recommend someone. If you are near UNC Chapel Hill, they have an excellent renal program. Google the hospital, Department and find the names of doctors who may treat IGAN.
This can be done with either a hospital or medical group.
Take the name and Google it- health grades, vitals often have reviews by patients who have seen a doctor.
My. present PCP ( former retired) helped me find my present nephrologist that way as he is not in her network.
Give it a try and let me know the outcome.
B..
Hi all
My husband was diagnosed Iga Nephropathy with minimal change disease in May 2019 His GFR was 20 but now 114.
He takes corticosteroid (prednisolone) from 60 mg and now tapered to 20 mg , and ramipril from 5 mg now 2,5 mg.
Limit salt and protein intake, more fruits and vegetables.
Stay positive, keep pray and be happy!
Hi MLes,
Welcome!
Your husband's news is fantastic! I am so happy for both of you and your family!
Thank you so much for sharing your story as it is an inspiration to the new members of our c
forum who have been recently been diagnosed with IGAN and anyone who has MCD; forget the other members of the community.
I totally agree that diet plays a major role in stopping progression of autoimmune as well as other kidney disorders.
Sounds like he eats similarly to me; I don't miss the other foods one bit.
Wishing you further healing and knowledge that my warmest thoughts and prayers are with you!
Please reach out again!
Bet 🌞
Hi Uke
It is very overwhelming at diagnosis. I have been diagnosed for 20 years now (when In college, now I am in early 40s). I wish I knew all the things this group is saying around diet and inflammation management. Make sure u find a nephrologist that understands igan. I had 3 biopsies to monitor my inflammation throughout, each time not too active but if anything happens, the doc can give me meds to reduce inflammation (and hence reduce kidney damage). Blood pressure also very important. But other than that, enjoy every day, Igan requires monitoring but u also need to figure out how to live and enjoy each day. The latter took me a while but it’s also super important cuz it is a long journey.
Please find and join”Natural Kidney Journey” on Facebook.
Agreed that it's all been overwhelming mentally and emotionally. It's taken time to process and there are so many unknowns. Worry about physical limitations there might be in the future if i'm on dialysis or get a transplant. Have had a real existential crisis in considering for the first time that at some point I will no longer exist as a human person, and how can everyone else in the world just go on with their lives right now, not thinking constantly how everything is so finite and time limited. I like the bittersweet quote from Bender in Futurama, who, upon discovering that his backup unit won't allow him to a transfer to a new robot, body, says "Anything less than immortality is a complete waste of time!"
Positives:
-immediate re-considering how I want to use my time. I've always been distracted in one way or the other by news, reddit, drama, etc. and this has made take more seriously that so much of it is noise, a reality tv show that might be important to understand from a historical perspective in a few years (i.e. political bs going on right now) but really doesn't matter on a day-to-day basis. I've been giving (or they've been stealing) so much of my time for so long.
-thinking more seriously about direction in my life in general. Accelerate plans for things that might be more difficult to do in a few year. Travel, other physically strenuous things, possibly take more risks (ex: skydiving). Think about if retirement should be earlier or later in life.
It's unlikely I'll ever be able to say "this was the best thing that every happened to me" but I hope it can be something that jolted me to change myself in positive directions.
Uke,
Great outlook, well written.
I totally understand your concerns and fear
Until your doctor tells you that you are headed for dialysis, or progressing; don't go there. It's easy to fall into that trap. Try to live in the moment and work with your doctor to set an action plan.
As Zazzel told you, ask about diet, BP, how aggressive this is questions as progression as she has
" walked the walk".
Once you get a plan in place, I feel that you will be less overwhelmed.
Please reach out again!
B...
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