hello here is my story

I was first diagnosed after my sister was with rare case of Alport. We both have hearing loss.. I was 11 she was 15 ish. She caught a cold and could not shake it. Went to to see a DR he took one look at her and told my mom get her to the hosp. It was a roller coaster ride from that time on. She did Hemo had 2 bovine stents put in > One stopped working after she hurt her self in construction class. (She was supposed to quit stubburn)

My mom donated her kidney. It was a terrible experience. They dropped her from the operating table and the kidney flipped and tore. Took 24hrs before they figured it out. A nurse in training used a dirty needle on her. Nurse realized what she did and reported it as the previous person had hep c. She ended up catching it and that extended her stay longer. Took her 3 months before she came home. 4 months later she became sick mom took her to see the Neph. He told her she was an over reacting parent and to go home and wait it out she died 3 days later in her sleep. The only Neph for 150 miles at the time so I also had to see him. (not fun) I then grew up being told by my parents if I made it threw puberty I would be OK til Menopause then I needed to worry. So I got married at 20. Lived a normal life Started bruising a lot so went to get blood work done at the age of 25. Six months later I got a bill and being fictitious I called and said I wanted my results before I paid. Long story they lost them missed filed them. Took them 4 days to find. Got a call and was told to come in tomorrow. (I worked lost my job) New Years day I was told My kidneys are failing and I needed to think which Dialysis treatment I wanted. Never heard of CAPD before then but knew that is what I wanted to do. Hemo scares me. We were living with my mom in our trailer in her yard saving to buy a house. Well that went well NOT the day I found out I needed to have the surgery to have my catheter placed my mom kicked us off of her property. ( needed BF help pay bills and he did not want us there) Later found out what we already new she did not want us there. We moved to a friends til things got out of hand with my family and my terrible DR so we moved to Longview. The DR there had no idea how CAPD worked nor did the center I ended up teaching them. At that time we carried the 6'hose and the 2000 ml bag with us 24/7. I was not told this until the first day of training. They drained the fluid in me then gave me a white square cloth with Velcro on 3 sides and an elastic band and said put it in there. I asked how to I disconnect the tube and bag and was told you do not see you tomorrow. I went numb drove home crawled into the bathroom and went in the fetal position and cried for hrs. Husband came home and after a while I let him in and he picked me up and said it will be OK we will make it OK. I did not believe him thought for sure he would leave me. (I had no confidence or self worth at the time) While living in Longview I continued PD for 2+ yrs then got the call. I was back to being me The transplant was wonderful. We moved back to our home town were our friends and family were. Life was good for 21 yrs then here we are again. 15 months on NCPD. Oh and I found out that my disease is Branchio-oto-renal syndrome. I found this out on my own and my Dr said oh yeah that makes more sense.

sp mod Cas