I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: kennebecriver on October 24, 2008, 09:37:33 AM
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I just started on hemodialysis and it is going pretty well. I have polycystic kidneys and so did my mom and sister. I had been putting off dialysis as long as I could. My numbers were terrible, but I had no "bad" symptoms and did pretty good for a long time.
This spring I started being evaluated for a transplant. One of the last things I had to do was to have parathyroid surgery done. I went to Mass General to have this done at the end of September. By that time, my symptoms got much worse. My lungs were filling with water and so was the cavity around my heart. My legs and lower back were swollen. I couldn't breath and was very fatigued. Climbing a flight of stairs almost killed me, but I kept on working through it all. I went in for the surgery and because of my weakened state and an allergic reaction to the anesthesia, my heart stopped pumping efficiently and the had to shock my heart into a normal rhythm. They never did the surgery and I ended up in intensive care for 4 days.
There the put a catheter in my leg and started me on 24 hour dialysis. I was unconscious for 1 whole day! After 4 days I was transfered to the "transplant floor" where I started hemodialysis ever other day for f hours at a time. (I had a fistula done in my arm back in March of this year.) Since then I've been going to the hospital M-W-F afternoons for 4 hours at a time. I'm still working full time, that's why I have to go at night.
I really don"t care for the dialysis. I leave work at 3pm and get to the hospital early, around 3:45pm, hoping they can put me on early. Sometimes they do, sometimes they don't. I usually don't get home until 10pm. That's a total of 7 hours...yuck! I've started looking into doing it at home; it sounds like a much better way to go.
Besides the agony of sitting in a recliner for four hours, may biggest complaint is the "antsy" feeling I get in my legs...it drives me crazy! Does anyone else have this problem?
Well, that's my long story. Chat with ya later...
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:welcomesign; kennebecriver. So happy you joined our family. Lots of great information and support here. Hope to hear more from you. :cuddle;
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:waving; :welcomesign;
P&K
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We are so glad you found us! There is so much information here that will help. Many have the restless leg syndrom you mentioned and we have lots of members with home hemo experience. They will all be very willing to answer any questions you have. We are also a wonderful support system for each other. People here understand what you are dealing with. So, post often and ask lots of questions. We are here for you :grouphug;
paris, Moderator
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:welcomesign; sounds like you may have RLS. There are several good drugs on the market for it. I take Sinemet and haven't had a twitch since I started taking it.
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Welcome, I am a newbee also.
It sounds like you waited too long to get on dialysis, but then again I understand why you put it off for so long!!
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:welcomesign; to IHD. Great site, great people, lots of information, understanding and support. What more could we ask for, well besides a new kidney ? Post often.
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Welcome kennebecriver, good to have you aboard.
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Ken, welcome to IHD. Sounds like the antsy feeling in your legs is RLS (Restless Leg Syndrome). I hate it too. Once your electrolites are back in line they should calm down. Best of luck and I'm glad you found us.
:welcomesign;
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Welcome to this wonderful community! The IHD family is one bright spot on this renal journey. We are glad that you decided to join us, and i can guarantee you that you will find this site very helpful. It is full of information, support and even fun. Here you have lots of virtual shoulders to lean on - all over the world!
some people have said that quinine helps with RLS (Restless Leg Syndrome). tell you doctor about it, and see what can be done.
Please know that you are now a part of our family. :grouphug; Post often and let us know how you are doing.
Bajanne, Moderator
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:welcomesign; kennebecriver
You came to the right place. These people are awsome. :yahoo;
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:welcomesign;
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:welcomesign;
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:welcomesign;
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:welcomesign;
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:welcomesign; :flower; :beer1;
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Welcome!
I totally understand what you mean by the amount of time spent on dialysis days! I've begun to think of it as my other job because it takes that many hours out of a week!
-Devon
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Great to have you "aboard" and thanks for sharing your story. I hope to keep working when I start but it sure seems like long days.