Hello to all my fellow dialyzers! My name is Dustin and I'm 29 years old. I live in British Columbia, Canada. I have been a home-hemodialysis patient for 7 years.
An overview of how I ended up on dialysis...
When I was 13 years old I went in for a regular doctors checkup. When he took my blood pressure, it was a little elevated which caused him enough concern to order blood tests. The test revealed that my creatinine and urea levels were elevated. I also had a urine test that showed I was passing microscopic amounts of blood (unseen by the naked eye). So, my parents and I were told I was in the beginning stages of renal failure. I had no clue what that meant or what my life would entail because of this unfortunate and very upsetting news. We were heartbroken.
Over the next few months, numerous tests were performed to try and find the cause of this kidney disease I had developed. I ended up having a kidney biopsy performed at Vancouver Children's Hospital. I was sooo scared. I was only 13! The worst thing that happened to me in my life up to that point were a few stitches in my head, and a fat lip from playing baseball. As my parents tried to explain to me how the procedure was supposed to go, I felt sick to my stomach from fear (and the giant needle they also described the doctor was going to jam into my back didn't help either).
The results that came back were inconclusive at best. Some doctors said I had Lupus, while others said it was another autoimmune disease altogether. To this day there has not been a final diagnosis as to why my kidneys would eventually fail. Post focal glomular nephritis (sp?) are one of the other diagnosis' I have heard over the years as well - sorry, I may have remembered that last one incorrectly. I'm really bad at remembering all of the doctor's medical jargon at times.
So, we now knew my kidneys were slowly being attacked by my body's own immune system. Bring on the drugs! I was on many, but the worst one BY FAR was prednisone. Now, don't get me wrong... This drug is a life saver... To a lot of people for a lot of different reasons. But I was now 15 years old and just beginning grade 9. If you don't know the side effects of prednisone, let me tell you. Aside from the emotional roller coaster I went through on a daily (sometimes hourly) basis, the uncontrollable appetite (I went from a somewhat picky/light eater to a boy who ate like a pig ALL DAY!)
But the worst side effect I experienced was the fluid retention. Prednisone is considered a steroid, so I was expected to add some weight and perhaps bulk up a little. Then the doctor told me something that I never expected. Most (if not all) people on this medication develop what is known as a 'moon face'. For some reason, another side effect causes fluid retention in your face - cheeks, temples and neck areas mostly. And boy, was I in for a loooong battle.
Because my kidneys were failing due to my immune system, and prednisone is an immune suppressant, they loaded me up on the stuff. I don't remember the exact amount (maybe 125mg?), but it was enough to make my face puff up like chipmunk cheeks, stuffed to max capacity. It was horrible. I HATED looking at myself in the mirror. I hated it even more going out in public... Let alone school. It's hard enough being a "normal/healthy" teenager going through the tough growing pains of high school - I now had to deal with the judgment, the staring, the jokes and answering and explaining the reasons as to why I now looked the way I looked. I had VERY low self esteem. I was depressed and my kidneys continued to fail.
When I turned 19, I finally ended up having to do dialysis. My kidneys were now useless. The nephrologist decided to try me on peritoneal dialysis first (due to my young age and the greater mobility PD offered). I went in for surgery for my catheter on April 20, 1999. I remember that exact time and date because I was watching television and saw the tragic shootings at the Columbine Highschool unfolding. It was a very sad day.
Surgery was a success and began training on PD the next day. To make a long story short about my time on PD... I was only on it for 6 months. They said my membrane was not allowing enough clearance and I would have to switch to hemodialysis ASAP.
I felt my body had been through the ringer... Now more surgery and now NEEDLES! Son of a b!tch...
I ended up having an all-natural fistula placed in my left forearm. It went well. Took some time getting it to mature, but it developed well. Then, my first hemo session came to pass. I was very nervous and quite scared. Seeing the size of the needles for the first time was incredible, to say the least. She offered the numbing cream before she began..." HELLS YES I want that! You even have to ask?!"
First needle... Infiltrates. Tried again... Missed again. That was the worst pain I had ever felt in my 20 years on earth. After holding the site and waiting for the infiltrated areas to stop bleeding, we tried again... finally got both in. To make a long story short, I was on hemodialysis for 6 months as well... But it was for a much better reason as to why I was not on for such a long time....
I was going to receive a kidney transplant!!!
The donor kidney was from my 60 year old Nana (grandma). She is one tough lady. She was a colon cancer survivor and now she was going to donate a piece of her own body. What a woman. I love her sooo much! The kidney transplant was a huge blessing. Though I did have a rejection episode, they did get it under control and I ended up with a good 3 and a half years with it. I was able to accomplish and participate in a wide variety of things and most notably, traveling. I was stll on a lot of medication, but the freedom and increased health made it all worthwhile. It was a blessing I'll never forget... I'm forever in debt to my Nana.
But then one day, I woke up with very itchy spots on my head, neck and face. I went into the doctor's office and learned that I had chicken pox (3rd time in my life! Crazy, eh?) it was horrible. It looked like I had leprosy. It was that bad. It was so bad that the pox were also inside of me - In my stomach and other organs. This, unfortunately, triggered my immune system, which in turn, triggered my underlying kidney disease... And I lost that precious gift.
It was a very very sad time... Especially for my family... Nana the most. It only took a few months from the time I was diagnosed with the pox to the time I returned to the wonderful world of dialysis!
One good thing was the fact that we had left my fistula in. I had taken great care of it for those few years and it still worked like a charm. Bad news was... I was back on hemodialysis.
A few months went by, and I was told about a new program at the hospital for training people to do hemodialysis at home. The program took six weeks to learn everything. It was great! The freedom of doing it at home trumped having to go in to the hospital three times a week. Dialyzing more frequently allowed me to have a better appetite, as well as a less restricted food diet and fluid intake. I felt pretty much "normal" to tell you the truth. I first did dialysis nocturnally (at night), but I could not get a proper night's rest. So I switched it to the evenings, and have been doing it at that time since. I could dialyze seven days a week if I wanted to, but I don't. I usually just do one day on, one day off, for now. If I have big plans or if I'll be going overnight somewhere, I'll go for two or three days on in a row so as to make sure I feel my best.
A few years ago, I was married to a wonderful woman. But her family did not like me from the start. They thought that I was holding her back due to my health. I understand now where they were coming from, but the subsequent mistreatment towards me and my life was uncalled for. Well, I guess her family did get the last laugh because she ended up leaving me one year later. The stresses and strains of my dialysis schedule was just too difficult for her to handle. She made me feel bad for having to go on my machine for 4-5 hours at a time. She said she felt lonely and bored. I ended up skipping dialysis sessions and that made me feel physically worse. She just could not come to grips with all the ups and downs a dialysis patient goes through on a daily basis (and her family's constant bickering over me did not help the situation either).
So here I am now, still truckin'. I have been really depressed the last year or so (mostly due to the pending divorce). It's just been an uphill battle, day after day. Some days I don't even get out of bed. It just hurts knowing there is a world out there that has passed me by. But lately, I've turned my faith and trust back to the Almighty. I'm finding the strength that I need to go on and live! It's hard. I still have my off days... But they seem fewer and far between. I have a great family who loves and supports me no matter what. I just wish that they would do more research into how a dialysis patient feels day to day. Just because I LOOK healthy, doesn't mean I'm feeling good at all. But all of you are very familiar with this experience. That's probably the most frustrating thing to deal with right now... Trying to explain to my family what this is REALLY all about.
Im on the waiting list. I go down to St. Paul's Hospital in Vancouver to see the transplant team soon. My brother is a match, but I have too many antibodies in my blood because of the transfusions I've had over the years. The only option I may have left is where they would completely wipe out my immune system and start from scratch. I don't remember the exact name of the procedure, so if anyone can tell me, that'd be much appreciated. In the meantime, I'll try and keep my head above water and find sources of strength to help me get by. Sources such as this "I Hate Dialysis" website.
Thanx for reading my intro. I know it's long, but I find writing therapeutic.
May God bless and comfort you all in your times of need. One love.
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