Im thankful that i can confine in this group it has given me so much insight on kidney disease. My husband had his biopsy last Thursday and his results were posted yesterday. The biopsy says its consistent with IGA neuropathy and mild intestinal fibroids and tubular atrophy. We are supposed to see the doctor Monday to discuss the results. I am terrified, i don't know much about this or what can happen. Is this something that can be managed? Will he be okay? I'm trying my best to keep it together so i can keep him at bay. Any encouragement will be helpful. His gfr was up from 39to 42 on his last blood test but his BUN increased from 40 to 44. Im not sure what i can do to help. If anyone is going through the same thing or has some advice it would be much appreciated.
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rere96
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The only thing you can do is learn everything you can about this condition and support him in what he wishes to do. The most important thing for you to do is to take time for yourself. Be sure to make some Me time every day because if you go down, who will look after him. Good luck and let us know how it goes
Important to get information on kidney disease. Davita does give a class on kidney disease that is helpful. Your Doctor too will give you information and a treatment plan, such as a special diet. Here is a link, in case you had not seen it before, that explains eGFR from National Kidney Foundation. kidney.org/atoz/content/gfr
Do not agree that "Your Doctor too will give you information and a treatment plan, such as a special diet." We have seen many cases, including my own, where the doctors say, "limit salt and drink water" and that is it, if they do that much. My advice is to visit this site and also sites such as Johns Hopkins, Cleveland Clinic and Mayo Clinic, and to educate oneself to the best of one's ability. Other resources include:
National education, support and advocacy organizations:
• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.
• Renal Support Network provides many support and advocacy services including a phone support line.
• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.
• National Kidney Foundation provides a portal for patients too.
I guess some doctors may not give you a special diet but speaking from my experience my Doctor did give me a CKD diet. It is based on my blood work for sodium, potassium and phosphorus. It was important for me to get the correct balance. The diet has worked for me. Have others had this experience, if so please share your experience.
Unfortunately, Not without being willing to drive 50-60 miles to another town. Those of us in small towns just figure things out on our own, like we do for a lot of things. Do the best we can.
And if you live in the country it's even worse. I drive an hour to see my neph. I didn't expect him to give me diet advice but he does listen and he did refer me to a dietician. I did get better advice from the transplant team's dietician however. But I've had to figure things out best I can based on my lab work.
I can strongly empathize with your frustration about access to quality health care as many folks do live in areas which are remote or need help getting there. It's a battle.
I found information via the NKF and a telephone number to call. They should be able to connect you with a Renal Dietician and other helpful information. I know that they had a renal dietician on the site a few years ago, but not sure how to contact her.
This number as well as a Private Chat to one of the Moderators; particularly Marissa_ A who is Partner, who are listed below should be able to give you some direction. Scroll all the way down to see the Moderation Team.It's worth a try!!
Please let us know the outcome as your investigation may help many others.
Stay Positive !
Bet
Here's the NKF information.
Welcome to the National Kidney Foundation's Community for people affected by Chronic Kidney Disease (CKD)!
My first introduction on what I needed to do was kidneyschool.org. Who owns that site? Do you know? It's very intensive and time consuming but extremely helpful if you have the patience to go through it all.
Your feelings of fear are absolutely normal; I'm sure that many members felt the exact same way when they heard the words "kidney disease."
Remember that every case is different and every patient is different; responding to different treatments.
IGA Nephropathy is an autoimmune kidney disease; involving the glomeruli, the tiny filtering units inside kidney where blood is cleaned.
I am a Membraneous Nephropathy patient, which is in the same family.
It's a journey but like all , the goal is to manage it with the help of diet and medication.
When you and your husband see his nephrologist, bring a copy of his labs and the biopsy report. Check off any areas that flag high or low based on the given lab ranges and ask about them.
Take a notebook and write down any questions that you may have and make sure that they, and the disease is explained to you thoroughly in basic layman's language.
It's important that you set up a medical action plan which will include diet, hydration, medications and ask that your husband's GP and other specialists be informed as they will all be on the same page.
Being an autoimmune disease, it's important to watch your consumption of foods which will cause it to flare such as sugar.
Like any other kidney disease it's important to watch consumption of sodium, red meats, protein, as well as phosphorous and potassium.
Ask for a referral to a renal dietician who will put together a food plan which is healthy, appetizing and nutritious based on your husbands labs.
If this nephrologist is unwilling to work with you, don't hesitate to seek a second opinion and find someone who will. I have done so as have many patients without regret.
I know that just the idea of this is a mind boggler, so take a deep breath.
Its a process which takes time to get the plan in place.
Below are some good articles on IGA and IGAN for you to look over.
Please feel free to reach out at any time for support. One of us will always reach back.
Are you in the U.S.? Unfortunately, many of us have not been referred to a "renal" dietician. In my case, I was referred to a diabetic dietician, who knew next to nothing about kidney disease. At that point, I had done enough research that I was telling her what I could and could not eat/drink.
I am so sorry that you had such a poor experience; it's disheartening. Unfortunately not all of these medical professionals are as " savy" as others.
I would have told the diabetic dietician what you were seeking and asked for a name of someone who works with renal patients. Just a thought, if you like, call your local hospital and speak to Patient Advocacy. They can often give you the name and and contact information of someone who attends to renal patients while they are hospitalized and contact them.
Unfortunately, medicine has put us in a position where we have to stay on top of everything and advocate for ourselves.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How do you deal with nerves waiting for the results of blood test.
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