Rare family genetic disease-Anyone else have one?

Aneeda72

Aneeda72

Well-known Member
I have kidney disease.

I was born with a right sided pelvic kidney. So instead of being in my back, my kidney was in my lower abdomen. The kidney failed and had to be removed in 1985. It was discovered that the, hmm, tube that carries the urine from the kidney to the bladder was wrapped around my spinal cord.

This explained the severe back pain I endured in the final days of failure. The doctors didn't figure out I was in kidney failure until it failed and I was urinating nothing but blood. Because you have two kidneys and my other kidney was fine, lol, the blood work was always great.

But I can't blame the doc. I always had some blood in my urine due to kidney disease. My family's own special genetic kidney disease. Passed down through the females of the line. Both my birth children have this disease. When my daughter was 15, she opted to have a kidney biopsy.

The purpose of the biopsy was to determine if her cells matched any known disease. Because both she and her brother had bleeding kidneys. Hers was worst. No matches were found and no treatment is available.

I have one one kidney. I am in stage three kidney failure. Lately, my kidney hasn't been doing too well. I am not allowed any NASID's for pain. I am not allowed any soda :(. I have other serious medical problems as well. There are so many foods I am not supposed to have. I am not a very good patient, lol.
 

Wow Aneeda, that sound very serious and painful. Sorry you were suffering from this and your children, wishing the best for all of you. Thankfully I have no genetic diseases in my family that I'm aware of.
 
Aneeda, I'm so sorry you and your children are going through so much, I can't even imagine how much that must be affecting you all.... I think that you're very brave and very stoical, and can't imagine I'd be the same if I was in the same position as you.. and especially knowing your child is facing no cure for her disease...I'm so sorry...but I'm sure all of us would make horrible patients with all of those things happening.. you must just be desperate to be out of pain, much less be able to go and do all the things you'd love to do again...

In answer to your question, no, I'm happy to say I have no genetic conditions in my family, that I know of....
 

My children were born with muliple birth defects besides the kidney problem. But they "appear" normal. Had I known, early on, of all the internal defects I had been born with I probably would have choose not to have biological children as my daughter has. Passing on defects, to children, causes a certain amount of guilt.

It was thought my daughter would have died young, but she hasn't. My grandfather died of the disease before my mother was 15.

I am not brave. I have a very high pain threshold. I am in a great deal of pain a great deal of the time due to muliple painful conditions. Sometimes, I cannot walk. :( You actually get used to the pain. I use patches and creams mostly. Once in a while a pill. I am in pain management, get shots.

Sometimes the pain is extreme. Then I get a lot of pills. I am DNR/DNI. My doctor is determined to keep me alive as long as possible. Lol. I am not so determined. I stay in this world for my children, but when I die, I want to stay dead.
 
Aneeda no I don't have one but sorry to hear your having pain.

Also welcome to the forum and I'm glad to have someone else to chat with. :love_heart:
 
I have what is called a right-sided Aorta. I don’t know if this is good or bad or if it even matters. I have listed it on every FAA physical that I had taken and not one single doctor ever made mention of it, so I am guessing that it’s no big deal.
 
Oldman,

I consulted Dr. Google, lol, who said, like my pelvic kidney, it's no big deal unless it causes problems shortly after birth. I assume :) it didn't.
 

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