I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: ILOVEFLUID on March 20, 2007, 08:41:45 PM
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I have avoided introducing myself because I do not know how to make this a short story. So I guess I will do it in installments. My first health problems started when I was 20 (back in 1991) I was diagnosed with diabetes (Type II). This was controlled by diet and exercise until 1999. In August of 1998 I got pneumonia and started to notice blood in my urine. I was sent to a kidney doc who thought I had IGA nephritis. I got pneumonia once a month for the next 4 months, always had blood in my urine and started to cough up blood. , By this time I was seeing a nephrologist and a respirologist. But neither of them was making a connection between the lung and kidney symptoms. I was gaining a lot of fluid in my legs and therefore, had a hard time sleeping. I spent my nights on the internet searching for lung and kidney diseases.
I always came up with the same disease, Goodpastures Syndrome. The reports were frightening, people were posting stories about relatives who had died very quickly with this disease. I mentioned it to my nephrologist and he said, "No one gets that disease, Lisa, it is very rare." I finally told him I didn't want to take the chance and asked for my scheduled biopsy to be moved forward. Three days later, I had the biospy (2 days before Christmas). They let me go home for Christmas with the promise of receiving the results on Boxing Day. Sure enough, I had GoodPastures. I was taken to the hospital and started on Solumedrol and Immuran. It was believed that I was not in need of plasmatheresis yet. Boy, were they wrong. My symptoms escalated and I was moved to the renal floor at Toronto General Hospital. I was on a waiting list for plasmathereisis and had my first treatment in 4 days. I spent a Month in the hospital and gained 80 lbs of fluid. I was not put on dialysis because they were hoping my kidneys would bounce back. After 2 months of waiting, I finally started dialysis on my 29th birthday. I lost 90 lbs of fluid in the upcoming months. I also started taking insulin because the prednisone was doing a number on my blood sugar.
My life as I knew it came to a halt. I no longer could take care of the children with special needs that I worked with. I now had special needs. My friends didn't know how to talk to me. I didn't know what to do with myself. I spent the next two years on dialysis. 23 lines, 2 fistulas and a graft later I received the call at 3 AM. They had a kidney for me, a perfect match. I rushed to the hospital and had my transplant the next Morning . The kidney didn't work at first and I got many infections when in the hospital. I spent a Month and a half there and finally got to go home. I had a long recovery ahead of me. I had spent 2 years in bed. I had to learn to walk again, I had to rekindle old friendships and most of all, I had to get my self-esteem back. Pretty hard when the prednisone, made my face the size of a moose's behind. I was also riddled with stretch marks from the quick fluid gain. I threw myself back into work as soon as I could and the next year, went to Teachers college. I graduated and worked partime, while waiting for a position to pop up. During this time I also met the man of my dreams, who I am marrying this year. While I had the transplant, my diabetes got worse and worse. The prednisone and anti-rejection drugs were making it harder to control.
I will continue this at a later date.
ILOVEFLUID
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Welcome ILOVEFLUID to IHD.
Thank you for introducing yourself, it is the best way for us to get to know you better. Whatever your reason for joining our family here at IHD, I hope you find everything you need, but most importantly I want you to feel comfortable to ask questions and come back and post often.
Great Introduction.
Here are some links to help you out.
Site rules: http://ihatedialysis.com/forum/index.php?topic=540.0
Chat: http://ihatedialysis.com/forum/chat/flashchat.php
The best search engine for kidney related issues: http://www.kidneyoogle.com
Relationship advice: http://www.renalromance.com
Sluff, Administrator
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Wow, what an intro, can't wait to read more.
So glad you found the man of your dreams.
Jane
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Welcome. It is always great to read an informative introduction.
Kitkatz, moderator
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Welcome to the family!
:beer1;
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hello!
Nice to meet you, ILOVEFLUID! You sound like someone with incredible warmth and strength. Glad you're here,
Kelli
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Welcome ILOVEFLUID good to have you aboard.
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:welcomesign;
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:welcomesign; Good intro...............Great name!
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Welcome, you have had a tough road but seem to be keeping your head up, best wishes on your wedding day.
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What a great Intro ILOVE FLUID!
:welcomesign;
I also will look forward to reading your next installment!
Kim
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Welcome aboard from another Canadian. Do you really love fluid !! Just kidding. :-*
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Welcome to our community! We are so glad you decided to join us. What a lovely intro! As another person said, we are looking forward to the contination. This is just the site for you. You have a lot to offer us, and I know we have a lot to offer you. Keep posting. Let us know how you are doing. This community has developed into a real family where we are there for each other, and this is not just hype. Just stick around and you will see.
Here is a group hug for you. :grouphug;
Bajanne, Moderator
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:welcomesign; and great intro! You have been through alot, but I admire your persistance...you saved your own life for sure! Great to have you join the IHD family!!
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:welcomesign; to the community, ILOVEFLUID, feel like I know you already~ but anxious for the next chapter...
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:welcomesign;
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:welcomesign; ilovefluid
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Welcome Lisa! I laughed when I first saw the name "ILOVEFLUID" - i was thinking omg don't we all?
Your story is sad and concerning, but it seems like you have been most determined through all of it (and we have only
seen part 1!)... I already feel for you.
Welcome aboard and hope we can all be of some support to you with what sounds like a difficult situation.
Glad you decided to share some of your story with us.. I look forward to more... but hoping things story
wise improve for you!
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:welcomesign;
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:welcomesign;
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Well, it is 3am and once again, my restless legs are keeping me awake, so I thought I would continue introducing myself. First of all, i would like to say how much i love this site. I had checked it out may times before and actually found myself fascinated by Epoman. I thought he was an amazing person and was always reading his posts. I was shocked, as everyone, to find out he has passed. He was the same age as me and his death inspired me to do two things. 1) to become active on this site and 2) to start taking better care of myself. I wish i had got to know him better but in a way, I feel like i did know him a bit. I have always felt very alone in this dialysis world, most of the patients at my center are much older than me and the ones who are young always seem so angry.
Okay, So, I left off with my taransplant and problems with my blood sugar. My sugar rose and rose and nothing could stabilize it. I was constantly sick with the transplant. Someone around me would get a cold and i would get some weird African flu (kidding). But I decided to go to Teachers College and pursue my dream of becoming a teacher. It was one hell of a year, living off 3-4 hrs sleep a night, working my but off but i graduated with Honours. The next year, i tried to get a job teaching and worked as a behavioral therapist for kids with special needs. I loved what i did and took some more courses and became certified as a Special needs Teacher. Still no work. I developed chronic bladder infections. They had no regular symptoms. My blood pressure would bottom out and i would be taken to hospital by ambulance. I was given hideous antibiotic, whose side effects were horrendous, but i could not shake these infections. I was told they were chronic and i would always have them. I would pass out and wake up in hospital days later, not knowing what happened. I never knew when they were coming as i never had any symptoms. The antibiotics would make me blow up like a balloon, faint and vomit. Believe me, they were not fun.
Before i got sick, i was quite a partyer. I drank lots of beer, smoked, went to parties that lasted all weekend. When i got sick this was not possible and my friends missed the old me. I missed the old me. i had nothing in common with these people i had been friends with since i was 12 yrs old. I went into a deep depression, induced by large amounts of prednisone and became a recluse. I wouldn't see or talk to anyone. This went on for months until the antidepressants kicked in. When I got the transplant, i considered it a new lease on life. I drank again, i smoked,. I quickly became the old me. After two years of doing this, i realized I had to stop. So i packed up and moved to Muskoka. A very rural cottage country up north. My fiance and I lead a quiet life. We stick to ourselves and enjoy our days instead of bar nights. We camp, canoe, snowshoe...basically enjoy the outdoors. We have certainly mellowed. I realize, i am still the old me, just grown up. Before we moved, i was told i was going to lose the transplanted kidney because of my high blood sugar. I got an insulin pump but it was too late. I did lose the kidney a year and a half after they said I would. But i was metally prepared this time.
Kay...will have to end this part....am getting very sleepy..part 3 to come soon.
EDITED: Merged Thread - Sluff, Administrator
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ILOVEFLUID , you sound like you are well on your way of figuring yourself out. It is hard when your lifestyle changes and your Friends don't quite fit anymore.
I will look forward to your update.
Kim
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Thanks for filling us in. You have certainly gone through some changes in your life. I am looking forward to the next update. However, be aware that you don't have to start another thread. All you have to do is go to your post, click on [MODIFY], type in the next part, and then post it again.
Bajanne, Moderator
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Wow ILOVEFLUID!! You must be an awesomely strong person and I have to say I admire you. Please keep updating this post because it is very interesting and inspiring to me. I am so glad that you have found a loving and caring partner that isn't afraid of dealing with ESRD. I too am diabetic and am having a hard time controlling my blood sugar right now and I am not even on steroids. I also have bell's palsy and steroids are the normal treatments. Not for me though because of the blood sugar problems. :welcomesign;
:grouphug; Earlinda "Early"