My kidneys failed in March 2000 after numerous doctors assured me they would not. I found out later that my kidney failure could have been prevented... my disease process went undiagnosed and then misdiagnosed for 20 years. It also turned out I was prescribed the wrong medication for my condition (which almost killed me) as well as the right medication in the wrong dosage so it did absolutely no good.
Five and a half years on dialysis has been difficult and debilitating. I do not do well despite aggressive hemodialysis treatments... four hours per session five days a week. I have significant complications that have nearly ruined my quality of life.
I went from being extremely active... rode horses, snow skied, ice skated, hiked, biked, played tennis, and raised and showed my own Golden Retrievers... enjoyed active memberships in numerous clubs with frequent social outings and travel... to being a virtual recluse. I go to dialysis and back and that wipes me out. My husband (bless his supportive soul and generous heart) takes care of the dogs and house... without him even my beloved Goldens would be a thing of the past.
Now I have osteoporosis secondary to my renal failure that has cost me 3" in height and I must wear a lumbar support and use a walker to prevent falls. I look like crap. UCLA gives me the runaround regarding my transplant status and when I can expect "The Call."
The frustration and depression are wilting at times. The highly restrictive diet would make anyone crazy. Recently I became unable to bathe myself - how humiliating is THAT? Except for a very few close friends and family, no one calls or cares. When acquaintences ask "How are you?" I never know whether to murmur a polite "Fine, thanks" or launch into the 20 minute litany of how awful things really are. I usually choose the former... after all, who really wants to listen to all my various woes? Just because *I* have to put up with them day in and day out does not mean I should whine about them to people who can really do nothing to help. It only makes them feel helpless and me feel weak for not sucking it up. I HATE (absolutely HATE) being defined by my illness. Kidney failure is not who I am, it is what has happened to me.
I email Dr Phil and Oprah repeatedly begging them to do shows on rare diseases so people can learn about my condition which I believe goes largely undiagnosed. No one should have to lose their kidney function when it is preventable! If anyone reading this produces calcium oxalate kidney stones, go to www.ohf.org and see if you fit the profile. If so, DO NOT REST until your doctors do the proper diagnostics to determine if you have this condition! You are your own best health care advocate!!! You only get one set of kidneys... when they are gone, so too will be any vestige of your former life. Don't let what happened to me happen to you.
So... anyone out there have a B+ kidney to spare? Ha ha, that's only half a joke. Being one of the 65,000 Americans waiting for a kidney sure makes you look at the obits differently. How many people take perfectly viable organs to the grave with them? If you want to make a difference, support legislation to make organ donorship an "opt-OUT" system instead of the "opt-IN" system it currently is today.
No one needs to reply to this... I am just venting. In my dreams I am still healthy but my waking hours are a nightmare I can't wake up from and never will.
Sign me,
NO WAY OUT
