I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: swramsay on December 31, 2008, 12:06:10 PM
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Hi everyone. First post. I began dialysis in September after surgery to remove my second kidney. My first kidney was removed 2 years ago - both as a result of bladder cancer. I am 51, married and have one amazing 10-year-old son. I am trying to remain as normal and active as possible but am experiencing some problems associated with uremia as far as I can tell. High potassium and phosphorus. Low platelets. I was feeling very faint at the gym yesterday while doing cardio.
1. Ever since surgery and dialysis the day following, my platelets have been a problem going as low as in the 20's. They hover between 40 and 80 most of the time. I suspect strongly that is it associated with something going on in dialysis. I have found an article here and there referencing dialysis associated platelet loss but my current nephrologist, my past nephrologist, and the dialysis team say they are not familiar with this. Has anyone here experienced dialysis associated platelet loss? I have has the heparin antibody test 3 times. Each time was negative. Even so, I do not receive heparin during dialysis nor for my catheter blocks. I read somewhere that the membrane composition of some dialyzers can influence platelet loss. Any other ideas? I am to begin training for home dialysis in a couple of weeks and am concerned about bleeding due to low platelets.
2. I am also experiencing symptoms of uremia. Difficulty walking, chewing, writing etc. (very disturbing), restless leg syndrome, sweats/chills, feeling toxic/cruddy, tired. My nephrologist seems disinterested and is unavailable for an appointment for 4 weeks (my first appointment with her). My phosphorus and potassium are high although I feel like I am watching what I eat fairly well. I am concerned about the symptoms. Any input from anyone?
3. I live in the Seattle/Tacoma area and am looking for the best nephrologist that I can find. I hope I am not limited to the geographical area surrounding my dialysis unit. The rest of my medical team is in Seattle. I often travel to Seattle for the rest of my care. I am very proactive in my care and need a nephrologist that welcomes that and is willing to work & communicate with me and the rest of my medical team. ANY REFERRALS FOR A NEPHROLOGIST FOR ME?
Because I'm new here, if any of these questions should be posted elsewhere for better exposure, please let me know. Thank you. I am grateful for the resource that this email group will hopefully provide.
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Welcome to the community :waving;
We have several members from the Sea-Tac area. Maybe one could point you in the right direction for a new Neph.
May the new year bring you some good news. See you around
P&K
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Welcome to our community! This is a good place for information as you will soon find out. I can't help you with your questions. However, you didn't say if you were prescribed phosphorus binders. We need to take them with our meals to bind the phosphorus and increase the calcium.
I hope that someone from your area can help you (I am far away in the Caribbean). This is a great place for support, and a place to vent when you need to. In fact, we are family here :grouphug; Keep reading and keep posting, letting us know how you are doing.
Bajanne, Moderator
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:welcomesign; to IHD.
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:welcomesign; my husband had MANY of the same problems and so we switched to home-hemo and that made him feel "normal" again
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:welcomesign; swramsayHope we hear more from you and please let us know what you find out. :cuddle;
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Welcome to IHD. You are going through alot. There are members hear who have also and can help. Ask your dialysis questions in the general forum for more exposure. Again welcome
Boxman,Moderator
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g'day and :welcomesign;
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Cyrus Crist, Virginia Mason.
anyone in that practice is good.
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Welcome swramsay, good to have you aboard.
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:waving; Hello and :welcomesign; to the group
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Hello and welcome to IHD :bandance;
I hope you find the answers to your questions within the forums, perhaps when on home dialysis you will feel better. :welcomesign;
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:welcomesign;
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Hi and Welcome to IHD swramsay. Keep reading and you will find the answers to your questions.
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Hi and :welcomesign;
Glad you found us. Welcome to our family.
Normie :grouphug;
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:waving;