Medical Information

In October of 1989 I was hospitalized with unidentified flank pain. The Dr. sent me to have an ultrasound on my gall bladder. During the ultrasound the tech ran the wand over my kidneys and said "Whoa!!" He went back and took a series of pictures and measurements of my kidneys. They discovered I had PKD (Polycystic Kidney Disease). I had never heard of it and no one in my family had it...this happens in about 3% of the cases. My GP sent me to a nephrologist he did a few tests and told me in 10-15 years I would probably be looking at kidney failure.

In 1991 my daughter was born I had some pre-eclampsia problems and my blood pressure was quite high, I retained a lot of fluid during the pregnancy. I had my son in 1992 against everyone's advice, but that pregnancy was incredibly trouble free and uneventful. In the ensuing years I went back to college and got my BA degree. The only medicine I was taking was for my blood pressure, but I was also 70 pounds over weight. The only other treatment was taking just tylenol for pain relief (no anti-inflamatories) and aggressive infection treatment with Cipro. In '96 my visit to the Nephrologist was a discussion of all the upcoming choices to make as far as how to proceed with this illness, he explained hemo dialysis and peritoneal dialysis and told me I was looking at 5-7 years. I moved from Washington State to North Carolina in November of 1997, I had no medical coverage so had no follow up care. I had some minor problems as far as infections but nothing else. In September of 1998 I moved back to Washington state, the next month my periods stopped. I started working full time and except for an all pervading tiredness was doing fine. Over the course of the winter I began to develop a lot of strange symptoms which I attributed to a variety of causes and never lumped together. I had no periods, hand and leg cramps, I threw up every other time I ate, my appetite was less than 1/2 of what it had been, I had a rash over the entire trunk of my body that itched constantly all of these I excused away including a pervading insiduos tiredness. In Febuary of 99 I only worked 9 days because I had "the flu". I was very very sick , throwing up, all over body pain, chest pain, headache and again VERY VERY tired. Finally I got medical coverage the first of March and went to the Dr. to figure out why I hadn't had periods for 6 months. They did a standard exam and a routine cbc, per usual "no news is good news". The next morning the Drs. office called and said the Dr. wanted to see me. I said "When?" they said "RIGHT NOW" This does not sound like GOOD news.

Mar 3 I went into the Drs. office and the Dr. came in and talked ot me. She asked how I was feeling I said I was fine just real tired. She said "Most people with your numbers are unconsious!" She wanted me to go straight to the hospital she was afraid to let me DRIVE! My creatinine was 13 and my hematocrit was 18. I checked into the hospital that day and was cathed and dyalisized that night. Since then I have had an AV fistula placed and a Peritoneal Catheter placed for CAPD. I am right now on Hemodialysis waiting for my PD Catheter to heal. This is all new to me so I am learning as I go. I don't have time to refelect on the "Why Me?" questions or have any real PITY PARTIES. Life is short and obviously mine could be a hell of a LOT shorter if I chose to make it that way.

May 99 Am on Peritoneal Dialysis and doing well all my lab results came back in the "normal" range. Still have problems pacing myself, 4 hours is about the max my energy level will carry me, I find I have to budget my time and energy which I never had to deal with before.

June 99 Still doing very well on CCPD have been through the entire work up for a kidney transplant and look to be a good candidate. I have to quit smoking this is the hardest thing, I have smoked for too damn long anyway. Am learning to slow down and do what I can when I can, sometimes it is a choice of spending time with my kids or cleaning house and the house gets to wait. If you are dealing with kidney failure try to be real about what you can and can't do. I HATE not working but it would mean no medical insurance and less time with my kids because of my energy level... I will have time to work later. My mom has been okayed as a donor we go in July for tissue typing if that comes back good then wew will be looking at surgery in the fall.

August 1999 still jumping through hurdles for the transplant had my right kidney removed flank incision on 8/23. Incredibly three days before surgery, which was supposed to be a midline removal of BOTH kidneys, I went in for my pre-op and asked the Dr. if this was the best way to do the surgery for the continuation of Peritoneal Dialysis and he said "absolutley not!". At this point I back tracked and said "what would be best then?". He said individual flank removal, also less pain faster healing I said lets do it that way! Right kidney came out on 8/23 and I was driving by 9/4

October 1999 had left kidney removed on the 1st, much more miserable as far as the hospitalization as it was over a weekend and all the Drs. were only "on call". Your care suffers on a week end I swear. In any case, I survived and woke up to the news that my transplant had been moved from Nov. 4th 1999 to January 2000 to allow my mom (the donor) more time to take off 20 pounds. So at this writing I am recovering from the second surgery very slowly. I have been through a series of tests, ultrasound on gall bladder, mammogram, pulmonary evaluation, and a vein/artery mapping via ultrasound, in addition to the two surgeries and an all day interview with doctors and case workers and dieticians. Incredibly I had a case worker come in and tell me "My job is to determine if your life is worth saving... to find out if you have any redeeming qualities." I was BLOWN AWAY!! What a thing to have to decide and what a tragedy should they decide you have no redeeming qulaities.... But according to her I DO! Altho at times I wonder what the heck they are. So now we wait and wait and in my case I wonder if a transplant is the smartest thing to do... As it turned out, I recieved a kidney from my mother on January 26, 2000. Here is my journal and some pictures will be here soon.