My medical adventures (well, just the highlights)...

Hi everyone.

So, here's my story (it's a long one, so I'll try to just give you the highlights):

I was born with a congenital kidney problem. My mother was a diabetic since she was 12, so it may have been in part due to that. Anyway, my parents realized that there was something wrong with my kidneys when I was about 2 years old (when they actually had trouble potty-training me). It turns out that I had a neurogenic bladder and mega ureters and I had to have my ureters surgically tapered and re-implanted when I was about 2.5 years old (my 1st surgery), but it was too late to save my kidneys. The damage had already been done by the urine backing up into my kidneys and they stopped functioning altogether. A few years later, I went on peritoneal dialysis. I don't remember too much of that (as I was so young), but I know that my parents ended up doing home CAPD dialysis with me for about 1.5 years. During that time, I had two separate peritoneal dialysis catheters put in, but I ended up getting a pretty bad infection and was switched to hemodialysis. I actually had an av graft put into my left upper thigh because that was the only place they could put it at that time (because I was only 36" tall and only weighed about 16.5kg).

I have been on dialysis (both types, but only peritoneal dialysis during those beginning years) for most of my life (about 20 years between transplants). I have had 4 kidney transplants. I had my 1st kidney transplant in Jan. 1987 when I was 7 years old. That one only lasted about 10 days because the doctors did a biopsy and hit an artery and it started bleeding so they had to take it out. In Aug. 1987, I had my 2nd transplant which lasted almost 8 years until I was a freshman in high school. This transplanted kidney was removed in 1995 and I went back on hemodialysis (which at the time my family was told by my doctor that home hemodialysis was illegal for pediatrics...a total lie). We actually found out that I could do home hemodialysis when my mom heard an ad on the radio and then we looked into it further. So I did conventional home hemodialysis (with a nurse who came to my house and treated me) for years. Then in Feb. 1999 (my 2nd semester, freshman year of college), I got my 3rd kidney transplant. That one never really worked and I had about 7 other major operations because of it over the course of 6 months that I had it. Subsequently, I went back on home hemodialysis and the kidney transplant list in August of that year. Unfortunately, this transplanted kidney also had to be removed a couple months later. I went back to doing home hemodialysis in my dorm room throughout the rest of my years at college in Boston. And, despite my 3rd kidney transplant disaster and dialysis, I actually ended up graduating from college a semester early (while maintaining a 3.9 GPA).

Over the years, I've been to many different hemodialysis units and have been dialyzed on pretty much all of the different types of dialysis machines. I had home hemodialysis with a nurse for years (three of which were in my dorm room while I was away at college) and I even tried nocturnal home hemodialysis (through the Rogosin Institute in NYC) for about 1.5 years (during Grad school). I tried nocturnal (mainly because it was the only type of home hemodialysis left at that time). Pretty much all of the other home hemodialysis companies that I used literally went out of business (and to top it all off my insurance was no longer going to pay for a nurse). So, by the end of 2004, training to do nocturnal at home by myself was the only home option I had! I did nocturnal dialysis by myself at home, 6 days a week for 8 hours a night on the machine at a really slow rate. This was the longest span I'd been on dialysis, thus far (almost 8 years). Then in July 2007, I got my 4th kidney transplant. Unfortunately this transplant never really fully functioned well either. And, on New Year's Day 2008, just when the new kidney started looking like it was going to work, I woke up in severe pain and was rushed to the Emergency Room. To my utter shock and disappointment this 4th kidney transplant stopped working and had to be removed on January 2nd. Interestingly enough, the same surgeon put in and removed all of my transplanted kidneys. So, today I am currently on hemodialysis and back on the national transplant list; waiting hopefully for my 5th kidney transplant. I am currently listed on 3 transplant lists in 3 states (it was 5 lists in 4 states, but my 1st list got a new surgeon who decided that I was no longer a good candidate for his program because my PRA was too high...the 2nd list just recently informed me that their program is closing and so I need to find another program somewhere else). So I also know about the process of getting listed with UNOS and getting multi-listed in multiple states. I would love to pass on this information to others as well.

Oh, and somewhere in the middle of all this in I believe it was 2002, my mom had to start on hemodialysis. I mentioned earlier that she had Type 1 Diabetes, and so, I have some experience in that area as well. My mom and I both dialyzed at the same time at home (in my den) with one nurse 3 days a week! ***Funny side story: this is actually when I learned to stick myself. We had this great nurse that came to dialyze us normally, but this one time he couldn't make it and they sent this temporary guy (who was supposedly really good because he ran a unit and was a dialysis nurse for 15 years). Anyway, he was putting my mom’s needles in first (and this was when she just started using her graft, so it was new and a very easy stick) and he totally missed the first stick and she was screaming and her graft infiltrated...it was a mess...that part not so funny, but at the same time, I was sitting across from my mom getting ready to be stuck by this guy next when I said to my dad (after seeing this guy totally mess up my mom's first stick) "Give me the needles." and I just stuck myself. I got it in on the 1st try too, but I figured whatever I did...it couldn't be any worse than this guy! From that point on, only our regular nurse was allowed to stick me and if we had any fill-in nurses, I stuck myself!*** Anyway, my mom and I were on home hemodialysis together for about 2 years when she passed away in July 2004. That was one of the biggest shocks and upsetments in my life! Soon after this in March of 2005 (my 2nd semester of my 1st year in Grad school), I began training for self-care, nocturnal home hemodialysis. I actually only had to train for 2 weeks before I was ready and given the green light to go home and dialyze myself! My training period was shortened greatly mainly because of all my years of paying attention and asking questions about my treatments and medical care…the importance of your involvement in your own health care is something that I hope I can pass on to others on dialysis.

Ok, so after all that, I am now currently (since May 2009) on home hemodialysis again using the new NxStage machine (because there's really no other choice in NY, besides nocturnal which just got to be too much for me). I dialyze 4 days a week for about 3 hours a day. And to sum it up...I have been on dialysis for almost 20 years between 4 kidney transplants.

I have always felt that staying informed about your disease is key to making the treatment work. I like to say: “The only person with you (the patient) all the time, is you (the patient), so the more involved you are in your care, the better the outcome!”

I have been involved in the kidney community and have always tried to help people and answer questions wherever I can. I am a Dialysis Patient Citizens Patient Ambassador and the NY ACT (Ambassadors Coordinating Together) Team Leader. This is my 4th year raising money for the NYC NKF Kidney Walk. I also recently started a website (http://KidneyLiving.com) and a facebook page for my site (http://facebook.com/KidneyLiving). I would greatly appreciate it if everyone would check them both out and spread the word. If you want, you can become a member of my site (http://kidneyliving.com/main/authorization/signUp?) and/or a fan of my facebook page (by clicking the "Like" button on my page). And, if you get a chance, let me know what you think...feedback is greatly appreciated.

Oh, and (as a side-note) I also love dolphins and skydiving...check out my pictures. I posted some on IHD.