I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: mysticnight on June 26, 2014, 06:12:16 AM
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Hey guys,
I am new to this site, and dialysis. I gotta say, love the title of this group - ihatedialysis! so appropriate.
Nice to meet you all, and sorry to meet you all, being that this group means kidney failure.
I have a very long weird story, but it ends about two months ago I thought I had the flu and was in bed for weeks, just sleeping and no energy. My abdomen and feet blew up huge. I suspected something was wrong, but had lost all faith in doctors by this time, not getting one diagnosis/treatment right with me over the years. My bf dragged me to the ER, where I was diagnosed with kidney failure, some cirrhosis of the liver (chronic hep C), zero thyroid function, and hemoglobin/iron and all that was dangerously low. 10 days in the hospital with emergency dialysis, iron, blood transfusions, and too many pills.
All along my symptoms were GI related and I always believed something was causing that and kidney/liver problems. If only a doctor had a brain, they would figure it out. Nope. Just live by lab tests, and "I" am the problem for not following their plans. While I was in the hospital, the food was so bad, I basically fasted for 10 days, my head and body felt better than they had in decades! It confirmed my issue was primarily about food and GI problems.
For over 10 years I have been a health nut, trying to resolve lifelong problems. Thinking if only I can be good enough, eat perfectly, fix my head enough, then my health issues will go away. I have been an alternative medicine girl, reacting to almost every drug. And here I am on the dialysis assembly line, living on chemicals I am allergic to - having even worse reactions than ever before and being so sick from dialysis, yet docs still have no idea why and dismiss my concerns.
So here I am, trying to find my own answers and how to minimize dialysis problems.
If you read all this, thanks :shy;
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Hi mysticnight ... :welcomesign; to IHD....
I'm not in Renal Failure (yet!), but my mum is....
Ask as many questions as you like... One of us is bound to be able to answer....
Looking forward to getting to know you better....
Darth, Moderator...
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Welcome to the site mysticnight
:welcomesign;
Take care, Cas
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Welcome to the site and I'm so glad you found us. There is lots of good information here from experienced people!
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:waving; Welcome, mysticnight! Sorry you are going thru hell and back. I can relate. What really gets to me is when the "left hand doesn't know what the right hand is doing". You tell everyone involved and yet, some act like they never heard you. Grrr!! Hate it when people, especially nurses and/or doctors don't listen, not even to each other! Thankfully most do but I have come across some that don't and it makes you wonder how they managed to graduate from med school.
Well, it's true, we have to be our own advocates AND active participants in our own healthcare. Just like many of the members on this site, sounds like you have the mental strength and attitude to do it. Keep up the good work! Let's hope things get better!
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:welcomesign; to IHD.
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Welcome along! Im sorry that we meet this way, through kidney failure, i'm sorry that you have had to start dialysis.
The start is the hardest, it takes some time for the body to adapt to such brutal treatment .... it does get easier, hang in there. When you feel ready it would be helpfull to learn what your blood levels are, and what they are supposed to be .... then work at getting/keeping them there. Im sure you will manage to work out a good renal diet. A good renal diet is very important if you want to feel somewhat healthy as a dialysis patient. You will still have bad days here and there ... you have to battle through these
Im 34 yr old and done dialsysis for 10 years. I had a transplant thats been and gone ... now back on dialsysis.
I hope you find some help on this forum, im sure you will.
I wish you all the best, i hope things get easier for you soon.
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Hi mystic and :welcomesign; to ihd.com.
I'm so sorry that everything is so horrid for you at the moment; hopefully things will fall into place and the right people will find the right ways to help you. Post often!
Poppylicious, Moderator
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As soon as Kristina reads this post, she will be here to help you or commiserate with you. She is also allergic to everything. But, any hoo :welcomesign; to IHD.
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Look into home dialysis - both hemo and PD. If you're of the right mindset, it can make dialysis a lot more tolerable than going to a clinic.