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Kidney disease

Posted by @elsieann in Kidney & Bladder, Nov 4, 2011

I would like to share my story and hope that people also will know how important it is to be organ donors as many people have been saying for a long time.

When I was eleven years old in 2002 I found out I had a kidney disease called minemal change disease. I can't tell you much about it as all I was told was to watch my sodium intake and my fluid intake. I seemd to be doing just fine. As that year continued on I noticed that my ankles started to become swollen and my legs became swollen but I figured it was because I was just on them alot because of the sports I was in and how active I was outside. In 2003 when I was twelve, I started volleyball and I ended up gettign the flu really bad, triggering something in my body where I started to retain so much fluid that I couldn't hardly get out of bed. I ended up in the hospital nine times in 2 months to try to get some fluid off. That was when I was told to go to Mayo Clinic to get a second opinion. My kidney doctor in sioux falls said something at one point about a kidney transplant but I didn't think it would ever come to that. In November of 2003, I went down to Mayo Clinic for 2 days of testing and it was then that I was told that I needed a kidney transplant. It was a devastation blow to me and my whole family. My older brother who was 21 at the time instantly offered to donate and he went down for testing in February of 2004. He passed every test and it was then he was told that he could donate his kidney to me. My uncle also wanted to donate and since he was older and passed the tests too with flying colors that he was gonna be the one to donate his kidney to me. I ended up getting my native kidneys removed in March of 2004 because they were to diseased and I was almost up to 200 pounds filled with fluid. After that surgery I did dialysis until May 11th, 2004 which was a week after my 13th birthday and that was the date of my transplant. My transplant was successfull, however 12 hours after the surgery my disease came back at full force attacking the kidney. I started treatment and dialysis however a year after the surgery that kidney was removed and I went back to being on dialysis. Finally in 2008, my brother got approved again to be my donor and on November 11, 2008 my older brother donated his kidney to me. I started making urine right away and even though my disease was there I was still doing good. It will be 3 years next friday that my brother gave my my chance at life again and I have never felt better. I have so much energy and I am now in college and graduating in May with my degree for medical assisting. It seems to me that I was always supposed to get my brothers kidney. I can never repay him or my uncle for what they did for me but I will be eternally grateful. I was lucky that I had family members that were matches but I was put on the list for awhile and they told me it could be years before I got a kidney. My whole family is now organ donors so that they can give someone else a second chance at life. It is an amazing thing. Now you all know a little more about me 🙂

Tags: kidney conditions

m047375, mizvikkz, story lady and 3 others like this

Posted by @mandj67, Jan 7, 2012

What a wonderful story of love and self sacrifice. You are so young to go through all of this and especially to maintain your courage and motivation for life. Praise God for brothers and uncles. My brother died 10 years ago but I still miss him terribly. I am quite sure he would have donated his kidney to me had I needed it before that. Keep up your faith and courage and I'll be praying for you.


Posted by @elsieann, Jan 9, 2012

Thank you so much. I was very lucky to have 2 people in my family who was able to donate. I am terribly sorry about your brother. Did you get a kidney? and even though I dont know you or or brother, I am sure he wouldve donated to you also. God is great and I have learned to lean on him in prayer for when times get tough. Thank you again!


Posted by @mandj67, Jan 12, 2012

My grand daughter is 16 and I can't imagine her going through all that you have struggled with! Actually my kidneys are doing ok. Although I have multiple cysts on both kidneys and liver, and angiomyolipomas also. They are not growing very fast and everything seems stable and benign. I have (probably) a collagen disease that caused this but where it really attacks our family is in the weakened structure of the blood vessels, especially the aorta and in the brain. Both my brother and my father died of sudden aortic dissections or blowouts. The ERs totally misdiagnosed them both and missed the chance for surgical repair.
Then my second child, a son, died of a brain hemorrhage at 19 days old, probably also related to the collagen defect. My third, another son, was born with almost no blood platelets, and could have died from hemorrhage also except for several miracles of the right Dr, the right place and time. Ted is fine now and is 35!!! And my first, Christie is healthy and the mother of my only grand daughter who is the joy of my life. She is the one who is 16--Kira Nicole.
I have to turn the light out now, I am being told (See, people keep telling you what to do, no matter how old you are! lol )

May God continue to give you peace and joy

"Grandma" Judy


Posted by @crlina0801, Jan 19, 2012

In the family so many love surrounded by the next, you are very happy, I have been the envy of people have an elder brother!

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