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Author Topic: Living a See-Saw Life  (Read 4981 times)
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #25 on: May 10, 2009, 03:45:35 PM »

It's free here too (NZ) but there's quite a rigmarole to get it, so I guess it is really expensive.  When I'm on it (my haemoglobin is high at the mo so I'm off for a while) I take 6000ml 3x a week.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
Yvonne
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Yvonne

« Reply #26 on: May 10, 2009, 11:25:11 PM »

When John first went on EPO the nurse said it was £40.00 a shot that was 2 years ago.  He has to have 2 shots a week now also an iron infusion for the necks 2 weeks.  Along with all his other medication and the amount of times he has been in hospital for different operations we dread to think what his med bill would be if we had had to pay for any of it!
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2007- since January 2007 carer to my husband John who has the following, allways been a very fit man up till then.
2007 - January Renal failure
2007 - March Diagnosed with a Horseshoe kidney and bladder cancer.
2007 - June One kidney, Prostrate and Bladder removed with stage 4 cancer. Urostomy
rose1999
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« Reply #27 on: May 10, 2009, 11:36:20 PM »

Yvonne, recently our GP said it was £70, (and Dad currently has 3x6000 per week) but whatever it costs I believe that having worked since he was 14 my Dad deserves every penny that he costs the NHS...............we'd be more than happy to pay in and never need to take anything out if it meant he was healthy!  I'm sure you feel the same way about John.

Aleta - I believe there is a 'black market' for it as athletes sometimes test positive for it, I believe they use it as a performance enhancer.
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willowtreewren
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My two beautifull granddaughters

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« Reply #28 on: May 11, 2009, 06:38:52 AM »

Quote
Aleta - I believe there is a 'black market' for it as athletes sometimes test positive for it, I believe they use it as a performance enhancer.

That's interesting, Rose. The only reason I figured there was a black market was because of the strict protocols in place.

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Bub
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« Reply #29 on: May 11, 2009, 02:32:29 PM »

Why, I am so pleased you are gullible --- er I mean interested in sending women my way.  I am in Tulsa, Ok, just moved into a new HUD apartment.  Have two ladies on the hook so to speak. Trying to remember that just because you are in a wheel chair and on oxygen doesnt mean there's no fire in the furnace.  My icon tends to describe me well. Not all that bright but stupid in a slow thoughtful way!!!!!
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paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #30 on: May 11, 2009, 06:46:39 PM »

Back when I took Procrit in 2004/5, i didn't have health insurance. My doctor at the time was very helpful in getting me free meds and the Procrit was one of them. The company that makes it apparently has some kind program to get free drugs for those that need them. I would assume many of us would qualify! I would ask your social worker about it.
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Jean
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« Reply #31 on: May 11, 2009, 11:13:39 PM »

Yes, there is a program to help, however, I did apply and they said they dont help people who have a cap on their insurance. Go figure.
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One day at a time, thats all I can do.
Bub
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« Reply #32 on: May 12, 2009, 08:45:05 AM »

I appreciate the empathy I have received about working full time with dialysis and anemia.  It is indeed tough and I struggle. I know one day soon I will have to take disability but am trying to hang on as long as I can. I have many dear friends at work that help me as much as possible, and my employer is quite willing to make "reasonable" accommodations as required by law. When the inevitable time comes I will still try to work part time or perhaps find some volunteer work that will allow me to contribute in some way. The hardest part is on some days I can barely walk and as sure as sunrise someone will walk up to me and say "You don't look sick, you look fine!" The only response I have is offer them a day in my shoes.
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