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Author Topic: I'm a brand-new, "Baby" Hemodialysis Patient. Howdy!  (Read 2480 times)
HellboundAlleee
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« on: August 31, 2014, 11:13:29 AM »

My name, "Hellbound Alleee," is a rather old avatar name. You could google it, and you'd find a lot of information. I'm a part of the Atheist Internet community.

But I also have a podcast, "Mondo Diablo." It's primarily interesting music and spoken word, documentaries, clips, music collage, world music, electronic music, strange, children's, and a lot of Holiday music. I also talk at the beginning and end of each hour. For the last two years, I have been speaking about my "mysterious" illnesses as little as possible, because I didn't think my audience wanted to hear about it. But since I probably have a small audience anyway, I will talk about anything I like. INcluding, now, Dialysis.

Which I do at a really great Davita center in Wenatchee. They are really kind and professional people.

Two years ago I left work to go to the hospital because I just couldn't work, I was super tired. Turns out my kidneys had failed. Then I learned that I had a disease called Sarcoidosis. It's an auto-immune disease that attacks organs. It also helps to make me as anemic as possible. I had to stop working because of it. They are givig me small to massive doses of prednisone, which helps get me really fat, which is just awesome. ::)

So in January, I got my almighty fistula. (Getting a fistula cover in the mail soon, super-psyched to sew a different armband for every day of the week and holidays!) And now I'm at my second weekend off. No more cramping (cross my fingers). Getting more energy.

I have been lauded by all my doctors (I think it's about six now) for having a good "spirit," a good "attitude." Thing is, I don't believe in pushing "Positivity." I don't think you should tell people not to think a certain way, because it doesn't work, anyway. Don't think about scratching your nose, even though it's itchy. Amiright? There just isn't the science to back up the idea that thinking positive will make you heal from illness.

Anyway, not thinking positive has gotten me through colon cancer, and hopefully it will get me through my next surgery. I have to go to the Big City (Seattle) to remove an ovary that has a big. growing tumor. I've named it "Bob." "Bob" has grown two centimeters in the last month, so "Bob" needs to move the heck out. "Bob" really has taught me that having children just isn't feasible for this broad, and she needs to celebrate the last vestige of freedom she has.

Anyway, I hope that maybe you would consider checking out my Podcast, Mondo Diablo. It is not for kids. It's for agnostics and atheists and questioners, primarily, and for those who Praise "Bob," especially.
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Dear Lord, Please change the laws of nature for my convenience. Amen.
cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: August 31, 2014, 12:36:55 PM »

Welcome to the site HA

     :welcomesign;


I hope you keep feeling better, and better

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
Darthvadar
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« Reply #2 on: August 31, 2014, 05:46:37 PM »

Welcome to IHD, HA....

You'll find lots of support here, and our nervous newbies very soon become very well informed and powerful self-advocates...

Visit and post often... We're here for each other...

Darth.... Moderator...
« Last Edit: September 03, 2014, 12:26:46 AM by Darthvadar » Logged

Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
Ninanna
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« Reply #3 on: September 05, 2014, 01:58:57 PM »

Welcome to the site!  I look forward to getting to know you better :)
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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
Rerun
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Going through life tied to a chair!

« Reply #4 on: September 07, 2014, 05:41:15 AM »

Hi, I live in Spokane.  I'm a Christian, and my faith has brought me through 30 years of this crap.  I hope you do well.  This site has a lot to offer.  Are you a candidate for a transplant?

Be well......

Rerun, Admin.    :welcomesign;
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