Sjogren's and renal Fanconi. Syndrome
Posted , 3 users are following.
Found information on this website that you might have an inherited renal disease if you have Sjogren's.
It is called renal Fanconi's syndrome.
Has anyone asked their doctor to check if they have this kidney syndrome. It has similar symptoms with Sjogren's.
I was looking up inherited kidney disease because I have an inherited kidney disease so I .cannot get a kidney transplant in the US, plus I have venous statis and perpherial vascular disease since the 1970's.
hope this information helps anyone on this website.
1 like, 4 replies
dee53012 john75639
Posted
HI John,
I am sorry you have these health problems. Sure is not promising. Am I reading this correctly? You have inherited kidney disease, so you cannot get a kidney transplant in the US? I am from the US and didn't know that. Is there a good reason? Would the donated kidney be distroyed by the disease?
D
john75639 dee53012
Posted
Yes, that is exactly what I was told yesterday at my haemodialysis center. Also, I have poor circulation problems, so I wouldn't be able to get on a transplant list. Two years ago, I became a double amputee because of circulation problems in my feet. I lost circulation in my toes on both feet and then developed gangrene on my toes, probably due to the excess water pooled out of my legs due to haemodialysis, plus I have diabetes type 2. I had a below the knee amputation on my left leg and all.of my toes on my right foot. My doctors told me I am a double amputee but I don't think that is an accurate description.
Due to my circulation problems, I was told I wasn't a good candidate for a kidney. Twould years ago, I have told my relatives that I didn't think I could get a kidney because I have more than 20 different disorders. I don't know if it is because I have 47 chromosomes. I am a xxy male and that may be another reason I have multiple autoimmune disorders. But at least I now know I am not a viable candidate for a kidney. Luckily, my cousins husband got a kidney two months ago. He needed one. I am glad he got one because he has 2 little girls that needed an attentive father. When you are on haemodialysis and going three times a week it is tiresome when you have to spend 4 hours in a chair waiting for a machine to clean your blood.
So, now, I am not mad or sad. I consider it fate. I must live my life as best as I can, and be happy that I am still alive connected to a machine 3 times a week, plus I have a nurse checking my health 3 times a week at the haemodialysis center. I am 65 years so how many people at my age get medical help 3 times a week.
I hope your medical problems don't depress you if you have an inherited renal disease or any other disorder that causes you pain.
dee53012 john75639
Posted
How long can this machine keep cleaning your blood? Does it have a shelf life or is it limitless?
My medical stuff does indeed depress me. yes, I have a good amount of anger, I cannot lie. though when I hear your story, i feel much more grateful. My life is hard, but i can walk. I am sorry you have suffered so much. I cannot ever begin to imagine how hard that must have been when they said you're loosing your leg, and then another. I just cannot fathum it. 💜
How do you actually feel, phsycally as well as mentally. What keeps you going? Are you in pain? What does it feel like to have the kidneys not work? do you feel anything (besides a sore butt for FOUR HOURS of sitting!) while sitting and recieving blood?
I am sorry if I ask too many questions. I just want to have a better understanding of what it is life; what helped you to adjust to the changes?
carol58098 john75639
Posted
God bless you John. I was a dialysis nurse for 17 years so I know very well what you are going through. It is a very hard life, however I know many people who have lived very long lives on dialysis. Go to your treatments, take your meds as directed, try to follow the renal & diabetic diet and you will have success. It is not easy, but in the US we are lucky to have dialysis. Keep on truckin John.