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mysticnight
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« on: June 26, 2014, 06:12:16 AM »

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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Darthvadar
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« Reply #1 on: June 26, 2014, 12:44:59 PM »

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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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: June 26, 2014, 03:35:50 PM »

Welcome to the site mysticnight

       :welcomesign;


Take care, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Ninanna
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« Reply #3 on: June 26, 2014, 05:07:39 PM »

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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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
PrimeTimer
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« Reply #4 on: June 26, 2014, 06:13:51 PM »

 :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!
« Last Edit: June 26, 2014, 06:15:01 PM by PrimeTimer » Logged

Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Bambino_Bear
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« Reply #5 on: June 27, 2014, 03:31:33 AM »

 :welcomesign; to IHD.
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I am a caregiver to my wonderful husband,  He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
He had a transplant in November 2019.
DeadAlive
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« Reply #6 on: June 28, 2014, 04:04:27 AM »

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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If it wasn't for kidney failure i'd be whupping Lewis Hamilton in F1, Be in business with Richard Branson, Be married to Beyonce and have children!
Poppylicious
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« Reply #7 on: June 28, 2014, 08:55:09 AM »

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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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
Jean
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« Reply #8 on: June 28, 2014, 01:43:26 PM »

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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One day at a time, thats all I can do.
Simon Dog
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« Reply #9 on: June 29, 2014, 09:24:33 AM »

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.
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