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I was in the hospital for a month this summer with a severe case of Peritonitis and had to be switched to Hemo Dialysis which they recommend I stay on since they can't determine the cause of the infection to the extreme that it was. I do not have a fistula yet but a catheter in my subclavien artery called a PermCath. Through this I hook up 3 times a week in the Self Care Hemo Dialysis Clinic. Sometimes on the weekends I suffer from Fluid Overload and I might have to go to the Hospital Dialysis Unit incase I need some medical attention since Self Care doesn't have as much available. They figured I would do well in Self Care because I am so young compared to most patients. They say they will teach me how to work my machine. Right now I am still new at it so it is a little over-whelming. But so was working my Peritoneal Cycler Machine at home. I will be able to adjust as I have with everything else.

I am a little nervous about getting a fistula eventually as I have bad viens that roll when they try to even just put an IV in or get blood out of me. I wonder how a fistula would be on me. I would like to get a kidney before my PermCath stops working but I have to heal from my upcoming surgery to get my old transplanted kidney taken out because they think that the production of Renin is causing my blood pressure to be as high as it is. It is running between 150/109 - 169/131 with me being on 4 different blood pressure medications. They are thinking that may also be causing my extra fluid build up in my lungs which isn't good especially since I get pneumonia very easily and other lung infections such as Bronchitis.

I haven't worked since the beginning of July since I was in the hospital for that month and then was home for a week and then went back for 2 more weeks as they treated me for my 2nd case of Pneumonia. I decided I wouldn't go back to work until I have recooperated from my next surgery where they take out my kidney. I figure there is no sense going back to work just to have to take more time out. They don't understand how things can go like I have learned that they can. For example, I didn't think that I would be in the hospital for a total of 6 weeks for getting peritonitis. I thought it could be treated successfully at home and then I would continue on Peritoneal Dialysis. But you can never know just how things will go.

After this upcoming surgery I will be able to be active on the transplant list again once I heal. They want my abdomen to be healed before they cut it open to put a kidney in. It only makes sense. I pray that I will get a kidney this year. On Hemo Dialysis I have to really limit my fluids and I am having a hard time with this, especially on the weekends where I go 2 days without dialysis instead of 1. If I have Fluid Overload then I have a very hard time breathing and can't exert any energy and feel very weak and tired. Usually when this happens I end up having the cab driver who drives me to dialysis to come right to my apartment and help me to walk as I am quite a distance from the elevator.

I come across a lot of people who have a very difficult time understanding what is wrong with a young person such as myself. They usually don't think that it is health related and judge me. That no longer bothers me so much. Infact I love to educate on my health since most people don't realize the impact kidneys have on their daily life.

A lot has changed for me in the last year and I have grown a lot. I had to have yet another surgery .. this time for parathyroid removal, because my calcium was too high. Now it is too low and I have had to go into clinic to have IV Calcium to get my Calcium back up to safe levels. The side effects of calcium being too low are not fun. It feels like electricity is shooting through your fingers and toes and if it is very very low then it can get so bad that you don't feel well at all and feel nauseous. But I have also matured a lot since last year. I am accepting that I might have bad days and that my health comes first. I also appreciate that at least I have dialysis and that I now realize more so just how lucky I was to have a transplant as soon as I did when I had my first one. 2 months! Wow! Now it has been 2.5 years of waiting and I realize that the longer you spend on dialysis the more problems your body can run into. I always thought that as long as you have dialysis that sure you are more tired than if you had a kidney but that is all. Now I realize that dialysis can never take the place of a real kidney. I DO want a transplant. And I know that when the day comes that I got one I will be more appreciative of it than I was the last time as a teenager. I didn't appreciate it as much then. All I saw was that I gained so much weight (which by the way was NOT that much but to a teenaged girl seemed tramatic .. here is a picture of me when I gained the weight from the Prednisone, and so you can get a better idea that I did not end up really fat here is another picture afterwards when I lost the weight). But now as I am older (29) instead of 16, I am not so concerned with my looks as I am with taking care of my health and living. :)

More pictures here:

My first Nephrectomy
Dialysis .. CCPD back in 1990 when the machine was much larger than now (2003). (** Baxter version back then)
My transplant in 1990.
My incision from my transplant (taken right after surgery) in 1990.
The hospital staff in 1990 of Sick Kids Hospital of Toronto, Ontario (Canada).
In 1983 when I was 9 years old in the hospital and they are just finding out what is wrong with me. I am suffering from extremely high blood pressure and pressure behind my eye.
CCPD in present (2003) times (** Fresenius non-IQ version! Now I have the IQ version. The Baxter version is different.)
Peritoneal Dialysis supplies.
CAPD (manual dialysis) .. I was doing this type in 2002.
I went to Kidney Camp as a teen. That was fun. I met others girls like me.
And just last year I went to a Kidney Conference up north in Ottawa Ontario.
I modelled after my transplant. It was my last time but I still looked good considering :P
Typically people who have kidney transplants get moon-face.
Me in 1999. 9 years after my transplant (you can't tell I even had one).

I read over what I last typed and I couldn't believe how immature I sounded, so I decided to write up an update.

I have been going to counselling, and have been switched to CCPD, Which is like the CAPD except this kind is done at night. It is commonly refferred to as the Cycler. I like it a lot better as it gives me more time and freedom. I can now work more hours at my job and am going to be starting a typing course to help up my typing speed so I can get an office job which I went to College a few years back for. I also am not feeling sorry for myself and don't see myself as so much different than other people. I realize everyone feels insecure and different as I do. I never talked to people on the net before but have started talking to 2 people in particular, which my counsellor has said is a good thing and will help my social skills, and I realized that they are just as insecure as I am. I realize I do not have to be afraid of people like I have been.

As for my health, I've been on dialysis now for 1 year and 3 months now and I have been having trouble with my exit site which seems not to want to heal. When I had a dialysis tube put in before (in 1990), it seemed to heal faster. I guess I just assumed this one would too, but it was put lower and I guess it's not in as good as a spot for me. But other than that, I seem to be doing pretty well. I am happy and I am still working in the job I've had since before I started dialysis. I work at a store in a Hot Deli. There have been hard times with the co-workers, but I have disability there for me if ever any real conflicts arise that I can't handle on my own. But I have handled all on my own so far, because I am trying to be independent.

My counsellor said he thinks I am ready to be put on the transplant list, but now I am not in such a hurry as I used to be. I am the most stable I've been in a long time, so I don't mind staying on this type of dialysis for a bit longer. I know there are lots of people who wait a very long time! At first I saw this as a long time, becuase I got my first kidney only 2 months after starting CAPD. Sure dialysis MIGHT tie me more to home, but not neccessarily. I just have to plan ahead. But the way I see it is right now I can't afford to go anywhere right now anyway (LOL)! :) ...I am just living everyday one at a time.

I know last time I said my mom was being tested to give me a kidney, but it turns out that she can't because she needs both of hers to live healthy for the rest of her own life. That is fine to me because I was worried about her health anyway. I'd rather wait for a kidney from someone who won't need theirs anymore. Someone who is giving and unselfish enough to sign their donar card. I found out I can sign one too. I thought with my health I couldn't, but I was told I can.

Well, there is not much to really say. This isn't really much of an update, but more of me just rambling. Sorry. But I am doing fine! Thank you for all the support from my mother, and my brothers, and please, everyone, pray for those in need of organs, and, even though not related to kidney desease, please pray for my God Mother / Aunt, who is dying from Cancer. Thank you. I just thank God for the health I have and that I have a good long life so far. A lot of people don't. And I pray for them and offer my support in any way I can.

Thank you for reading this. And please, come back again!

Date Written: 2001.

I was sick since I was born but when my mom took me to the doctor over and over again, it was always, "She has the flu" or some cold or something or other. I was always weak, skinny, tired, inactive, and disoriented. At the age of nine I was going blind in one of my eyes and my eye doctor sent me to the hospital. I had extremely high blood pressure which would've even been considered extremely high for any adult. The doctors said I should have had a heart attack or stroke or something. I ended up in ICU too weak to turn over or even talk or even stay awake and aware for much longer than a few seconds.

I was diagnosed with renal failure and told it was too late to save my kidneys. The fuction was slowly killed off by so many infections through the years caused by a reflux problem not being fixed on. I was put on many pills and was in and out of hospital until it was finally time to go on dialysis when I was 16 years old. I was in grade 10. I did not have many friends, being sick and weak, but I had a couple close ones. But at that time my main support was my family. I went on CAPD and went for check ups in Toronto to the Children's Sick Kids' Hospital. School was hard because my principal, Miss Ouellette was not supportive at all and would not give me a room to do my dialysis except for an old locker room which was disqustingly dirty and had a broken vent in the bottom of the door. She said it was either take ir leave it. So I was forced to drop two courses and come home after luch for dialysis and stay home for the rest of the day.

I was lucky because I got a call from Toronto two months later that there was a kidney for me. The call came about 9pm on April 10th, 1990. I got to Toronto (I lived 4 hours away) and had my transplant in the morning April 11th, 1990.

I was not used to or prepared for the side effects of all the immunosuppresent medication and had a hard time dealing with it. My dad kind of made fun of my facial hair, being a girl. I don't think he realized that it hurt my feelings until later when he tried to make it up to me by saying I was his beautiful butterfly who was a furry cattepiller before but now was beautiful and flying (I didn't have energy before). I got real depressed which I guess is a side-effect of Prednisone. But I attribute most of my depression to having a hard time ajusting to all the changes in my life.

I had new energy but my family was used to me not even going outdoors. I wanted to make more friends and go out places. They were so worried about me and wanted to keep me under their wing. I joined and innocent band (through the Canadian Conservatory of Music) with mostly guys and we went to the States to compete against other bands but I got into partying and just trying to be "Normal".

I always felt like it was some hard task but one I had to achieve. That I had to strive to be like everyoone else because I was "not Normal". I tried so hard to experience everything and to learn and make up for lost time. I was fully aware of the fact that everyone saw me as the "sick girl" who was shy and would never do anything outragious. I wanted to explore life! I had this huge yurning!

It got to the point where my mom couldn't handle me any more and told me that if I wanted to hang out with my friends more than family then why don't I go live with them. So I said fine and left. It was a Friday morning before school. I told my brothers I would not be coming back and they said, "Ya, right". I slept on a friend's floor that night and the week after that i stayed at a cop's house. After that a friend got me a place with his old landlord for a few months.

During this time I got even more depressed since I was so used to being taken care of. I didn't know how to fend for myself. And I was not used to being alone. I clug onto this guy I met who was terrible to me. After my tranplant I had gained weight from the Prednisone (30 lbs. in 30 days!!) and so I had terrible stretchmarks down past my knees and around my hips. He told me he kept cheating on me because he couldn't stand how I looked with all the marks. I became very self-conscious about my looks and more depressed. I had stopped going to London hospital (I was switched to London once I turned 18) because I couldn't affrod to go. I was not on disability because my mom had taken me off of it befoer kicking me out fully expecting to take care of me herself for the rest of my life. But at this same time she and my dad were having problems similar to what I was having with my boyfriend but for different reasons (my mom is beautiful).

It took awhile but here I am, 11.5 years after my tranplant and back on CAPD. I started CAPD May 2nd of this year (2001). last November I was very tired and weak and went to see my Nephrologist. I hadn't been seeing him often enough because I was in a very important job that I was trying too hard at because they were judging me all along on my health and I needed the money too badly and it was 12 hour shifts that left time for nothing else for me. But when I went to the doctor I had to have a blood trasfusion and IV Iron because my Hemoglobin had dropped to 66! I was so waek that I was unable to even shovel my driveway to get my car out to get to my appointments and I felt stupid, -- a grown adult but still young, and supposed to be healthy. I started crying and went into the house before the neighbours could see. I managed to make little pathways for my tires so I could get my tires out since none of my house mates were home and I had to go to the doctors!

Now I have to go for counselling before I can get my transplant but I've had to cancel twice and now they won't give me a new one! I have to call and hope for a cancelled appointment that I can take over. the first time I cancelled my car broke down and I couldn't find the number in the phone book and the second time my boss woudn't give me that day off. I now work at a job where I only have short shifts but they are not very supportive of my health either and a co-worker even suggested that I be fired because what good am I like this? My availability is much to be disired!! But they won't give me the time to do my dialysis without docking my hours more (we're only allowed a strict 1/2 hour for lunch, not a minute more) and I'd have to go home to do it because even their washroom isn't addiquate as it is like the movie theater in my city where there's no doors but a wall that you walk around to get into the washroom and it's open to the public.

But the good news is my mom and I talk now and she is being tested to give her kidney to me. I worry though about the future and wouldn't have minded being on the waiting list again instead. I have a poppular blood type (Type O pos) and last time I only had to wait two months! But my mom insists on "giving me life twice", as she puts it. I worry about failing her though. If it doesn't last long, she might blame me.

But I am a lot more mature now. i am no longer that teenager who just wanted to live! I am a 28-yr. old woman who feels as if I've wasted my life trying to be "normal" like everyone else and I want to make things happen for myself! I want to get out of debt and get a real carrer and go back to school and get a good car that doesn't always break down and maybe one day by a house and stop sharing living with other people. But I'm scared of doing so much on my own even still and I think that is what had been holding me back. yet, I know that life is precious and that I have to get over my fear and live my life, do something with it, and make my mark in this world because who knows what the future will bring and how long I will really be here!

I realize life is so very precious and you have to live it like it's your last day but enjoy it like you have the greatest life because it is yours and no once else's! I guess i'm doig this website because i feel if I had more support then maybe I can fulfill my dreams and be everything i could ever be in my life! To get over my weakenesses, my dislexia, my health, my finacial problems, and my depression! To just go out there and be everything that I know in my heart that I can be!

Please, don't be afraid to tell your story in the Forum! Just put the topic as your story, and in brief your age range and type of treatment if you are willing. Thank you! And God Bless! -- Angie