my story

Ok this is my third time trying to finally get this story on here. Twice I started and hit a button my accident and wiped out the whole thing just when I was getting ready to post it.

I'll try and make it as short as I can.

Late 1984 to early into 1985 I had fluid in my legs went to the dr. I was pregnant and my blood presure was up they ran a few tests (blood and urine). I had a kidney problem but they couldn't be sure just what because they couldn't do any extensive tests because of the pregnancy. I was put on all kinds of meds for the bp, fluid pills and complete bed rest. I spent 5 out of 7 months of the pregnancy in the hospital.

At 26 weeks the drs. decided to take the baby becaue my bp was dangerously high. Jessica was born at 2 lbs. 12 oz., 10 and 1/4 inches long. She was so little I was almost afraid to hold her. She had an intestional infection that took a few weeks to clear up but from then on she has been fine.

Later that year I went in to have a biopsy, they found that I had fsgs. I was told my kidnies would not last much longer than two years if that. They did try and treat me with dif kinds of steriods but nothing worked.

Late in 1988 I had been loosing weight and having a hard time eating. Any thing I ate just came back up and I hadn't slept it seemed forever. Insomnia had been a big problem I had no energy both from being sick and no sleep and trying to work and take care of three small children 3, 5 and 7 years old.

Jan. 9, 1989 went to the dr. was put in the hospital and started dialysis imidiately. I was down to 89 lbs and on dialysis they took off another 8 lbs in fluid. (I am 5 feet 2 inches tall) just to give you a picture of how skinny I had gotten.

I was did dialysis for three days straight. Late Jan. I had fistula surgery that went well, I had a subclavian cath. until the fistula was ready. My cath fell out one night while I was out with my sister. Before they tried to put it back in I asked the dr. if they could try and use my fistula. They were hesitant as it had only been two weeks but much to their surprise it worked rather well and has been going strong ever since.

A few months later there was a family meeting with my parents and siblings. All were intereted in getting tested to donate a kidney

. I have 5 brothers and 3 sisters they all except for one were there to be tested. My sister Lori (she is next oldest to me) got a call from the dr. a few weeks later, she was a near perfect match. The only better match I could have gotten would have been an identical twin.

Sept. 7, 1989 transplant day, I was dialized the day before and we were both admitted to the hospital. My poor sister was so scared me on the other hand I was so excited, I really wasn't scared at all. After all the way I saw it what did I have to loose. If it didn't work I would be back on dialysis. I guess I didn't really think about the dangers of surgery, at that point it hadn't really been on my mind of all the things that could go wrong other than the kidney not working.

Surgery went well my sister and I both did fine. I had to learn all the new meds before I could go home. There were 13 dif meds and then you had to check your weight and bp every day and keep a journal for the docs to see at each appointment. 3 times a week at first for blood tests and check ups. Over the next three to four months the appointments got to be down to once a week then once a month. All was going well the kidney was working I felt like a new person.

I had gotten down to docs once every six months. I had just gotten down to the point where my dr. told me I didn't have to come back for one year. I think it was around June of 1992 I started noticing fluid in my leggs. Made a new dr appointment for they did blood tests and urine tests it seems there was a problem with the kidney. I would have to have another biopsy

I had the biopsy it showed a return of the fsgs, once again they tried to treat it with steriods but to no avail. Sept. 1994 I was back on dialysis. Another family meeting my siblings were still interested in being tested once again. This time my brother that was unable to be at the first one was there and as it turns out he was found also to be a near perfect match. He was a good a match as my sister that had given me the first kidney.

Jan 24, 1995 my husband's birthday I went in for my second transplant. Again things went well, my new kidney was working my brother and I were back on our feet and doing well.

In Dec of 1995 I got a call from my dr. after one of my appointments. She had bad news it looked at though the fsgs was once again returning. After Christmas I was to go to the hospital for yet another biopsy to confim what they thought was happening again. That kidney worked until Feb of 1999.

In 1998 there were still family members interested in being tested once again. I too was interested in trying again as I had read about a woman that had the same thing that I had (fsgs) that had 6 transplants and finally the 6th one did not get the kidney deases back. So I figured as long as the dr said I was ok to have the surgery I wanted to try again.

11 people were tested 9 were matches but no one passed the pre-transplant physical.

Every on that was tested had some reason they couldn't donate. Though they all thanked me as if they hadn't been tested for this there were things they would have not found until it was too late for them to do much about it. Any how I was placed on the transplant list. I had an extreemly low PRA count (3) increadably low especially for some one who has already had 2 transplants.

Over the next few years there had been a serprising amount of offers for donners. They had been tested some were matches but again not one of them passed the physical.

Dec. 16, 2003 7:00 AM the phone rang, it was the dr. with good news they had a kidney for me. I called my husband as he had already gone to work then I called my sister and mother to tell them.

De. 16, 2003 9:00 AM I was at the hospital getting ready for my surgery. Surgery went well but then I had a reaction to one of the new anirejection meds ended up in ICU for the next 2 days.

Got through that the kidney had not started to work yet. I needed dialysis twice over the next week finally the new kidney started working it seemed all was going well. I had to keep being told to drink more fluids as I was dehydrating the kidney was putting out more than I was taking in. $:-\$ Who would have thought that I would be tired of having so mucdh to drink.

I went home from the hospital things seemed to be going well. Went for my thrice weekly blood draws and urine tests. My creatnine was going up and I still had protien in my urine. Time for a biopsy, the dr. was afraid that the fsgs was back again. Good news and bad news, no fsgs but there was rejection. They though OK as long as it's not fsgs as there still was no treatment for that, rejection they could treat. Go figure it would be my luck to have a rejection that was resistant to treatment. They tried every thing they could posably do to stop the rejection. I was in the hospital more than I was home for the next few months.

I think the treatment to try and stop the rejection was worse than the actual rejection itself. I was throwing up all the time I had diahria so bad and an ifection they really didn't think I was going to make it. Once again I was down to 85 pounds and totaly wiped out. I think it was worse than the first time that I got sick. One of the meds used in an attempt to stop the rejection was some kind of ceemotheropy and that really wiped me out. That on top of little to no kidney funtion really did a number on me.

May of 2004 I was back at dialysis once again.

In August of 2005 I was once again in the hospital for surgery. It seems my parathyroids were acting up, they took out most of them they just left a little piece of one.

The bad good news since the last kidney was lost to rejection and not the desease the dr. will actually consider me for a 4th transplant in the future. They would like to wait some time to see if they come up with some new treatment for the fsgs. I think that is a good idea, there are all kinds of studies going on all the time. I am confident that sooner or later they will find some way to treat it. Even if they can't cure it I think they will be able to treat it.

If the last kidney was lost once again to fsgs they would not have even considered a 4th transplant.

Here I am going on two years later and I am not back on the list but if they make some progress my daughter would like to donate. She even went so far as to find what blood type she is. She is the wrong blood type but there is a program out there I don't know how many of you may know about it. It's some thing like a kidney swap program.

My daugher is an A and I am a B, they would find some one waiting that is and A that only has a B donnor and we would swap. If there were a match obviously. But my daughter knows that when I do get a new kidney that a live donnor offers the best chance of survival of the kidney.

Finally that's my story I hope I did a good job telling it. I don't know if any of this is helpful to any one else but I hope it helps shed some light on things.

I would say transplants are soooo worth it. I plan on trying again in the future.