My son: My son had a kidney transplant... - Early CKD Support

Early CKD Support

7,972 members2,739 posts

My son

ScoobyDoo910 profile image
4 Replies

My son had a kidney transplant when he was 3 in 2005, now at age 16 the Nephi wants to try again for the 4th time to get a biopsy. Kidney is hidden so all attempts have been a failure. Had to pay of course for them but no answers. Okay so I have to say this he has kidney stones in that transplanted kidney too. Always have had protein and blood in urine not detected by the naked eye but always present for years. Also he has been throwing up once a day off and on since he was 12 yrs old. Failure to diagnose on that one . Just had to live with it. So very hard to keep weight on. My question is how many times do I let them try because when they tryed to remove kidney stones a vein was hit and he started bleeding out almost lost him. So spent 4 days in nicu touch and go even with kidney function. Now he's on ivig treatment every 4 months now. Any thoughts would be helpful. If anybody's has questions I will answer to

Thank you

Written by
ScoobyDoo910 profile image
ScoobyDoo910
To view profiles and participate in discussions please or .
Read more about...
4 Replies
jaykay777 profile image
jaykay777

I don't know whether you are in the U.S. or U.K., but in the U.S. you can call the National Kidney Foundation at 622-9010. You can also do an online search for NKF.

ScoobyDoo910 profile image
ScoobyDoo910 in reply to jaykay777

The us. What do you think the national kidney foundation is going to tell me different then the team of nephrologist, urogolist, ect. Just a thought on what you were thinking. But I will do that to see what they say. Willing to try anything.

Swimmingpooldeck profile image
Swimmingpooldeck

your son is in my prayers - - God will help us, I'm sure. HE is the source of everything.

Zazzel profile image
Zazzel

I feel for you and your son. It must be infuriating not to get answers after so much time. Forgive me if I'm throwing out an idea that you have tried, but my first thought when someone mentions nausea after eating is perhaps a food intolerance or allergy. You mention protein and blood in the urine which means your son has some form of nephritis? I realize he was born with the condition, but is it due to a weakened immune system?

I ask these questions because I have IGANephropathy which was either brought on or aggravated by food and environmental intolerances. It got to the point that I was also throwing up often and couldn't figure out why, nor could the doctors. After much research, I decided gluten was one of the issues. After going gluten free, I felt so much better, but was still having issues even when eating really healthy. I finally took a food intolerance test called "ALCAT." It's pretty controvercial and not accepted by mainstream medicine, but since I've been eliminating the items that were found to be an intolerance for me, my issues have almost completely gone away. I still have kidney disease of course, but I feel better and my GFR has risen.

In any case, gluten intolerance has been linked to certain types of nephritis. Breads and bagels were my go-to-food when I wasn't feeling well because they were so bland, but ironically enough, they caused me to be sicker.

I don't know much about kidney stones, but I've heard dairy can flare it up. So, perhaps that is causing issues as well.

Do you have any naturopaths in your area or integrative doctors? Both types of doctors have helped me so much with my issues. Unfortunately, most are not covered under insurance, so it can get expensive.

I hope you are able to find answers soon for your son. Sending positive thoughts and prayers your way.

You may also like...

My Dad has just 20% function left

Everyone. My Dad had an aneurysm earlier this year and his kidneys have suffered. Now he has 20%...

my dad has early signs of kidney failure

hello my dad has been told months ago he had early signs of kidney failure and was put on ramopril...

Is my disease genetic or not?

be clued up in everything kidney related but she basically said that kidney disease Can't be...

My husband hasCKD. I’m so scared

45 years old and his primary has just diagnosed him with CKD. He has GFR of 70. Doctor really...

What do my results mean

scary. I have had Protein in the urine for a couple years it shown 2+ And 1+ blood in urine....