Ambers Story

 I went to my middle school check-up, before the 6th grade. They found too much protein in my urine. My pediatrician gave my mom a referral to take me to a nephrologist. He did tests & didn't know what was wrong. He said I needed to do a biopsy of the kidney to get a definitive answer. I had the biopsy done October 20, 1992, the day after my 12th birthday. My childhood ended that day. They found that I had the disease, FSGS, Focal Segmental Glomerulosclerosis. FSGS is a disease that attacks the kidney’s filtering system (glomeruli) causing serious scarring. Though the years I have traveled back & forth to Boston Children’s Hospital. I’ve seen many doctors & healers & tried many medications, but to no avail. My kidney's deteriorated until March 27, 2002 when they had stopped working. On March 29th, I had a port put into my chest for immediate hemodialysis & a catheter placed in my abdomen for my peritoneal dialysis (which needs time to heal). I had to go every other day to a dialysis clinic for 3 weeks. When I healed, I switched to peritoneal dialysis. I do this dialysis every night for 8-12 hours. That was my last night sleeping free. I started on the Fresenius company, "Freedom cycler" which I did every night for 7years. Fresenius has discontinued that machine & I had to switch to Baxter Company, continuous cycling peritoneal dialysis (CCPD). I started that on April 1st & I have done so every night to present. This machine makes noise, pulls & pushes fluid into the peritoneum, causes me pains, and I lose sleep. I'm always exhausted. I don't feel like myself. I also have many secondary conditions that come from the disease. (Things like - Renal bone disease, arthritis through my body, hyperparathyroidism, ECT.) Much of which makes everyday tasks, painful, and sometimes, impossible. I have a hard time accepting any limitations on my life and activity, and it is very hard to always need assistance for simple things. I have a daily reminder not to take anything for granted. Because of this, I have decided that a Transplant is a good option. I am trying to get on the Tampa General Hospital kidney transplant list. At this time, we are waiting on the Transplant coordinator & medical review board to accept me. Transplants are not a cure. It is another form of treatment. There are no guarantees. People cannot live forever on dialysis, maybe 25 years the most, or so I've been told. I was also told by a transplant coordinator from Fort Myers that for every year you are on dialysis, they subtract your life expectancy by 10 years. Approximately 100 year life expectancy - 100 years (10 years on dialysis, multiply by 10) = 20 years..... I'm 29. :-( They often don't realize what they say is hurtful & scary.

     

If it weren’t for my faith in God, my supporting husband, my loving puppy, family and friends, it would be unbearable.


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