Lucinda
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Life is great!
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« on: May 23, 2009, 04:47:19 AM » |
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I just met a guy who does dialysis through my centre and he is absolutely amazing. He is a triathlete and I met him when he was just getting back from a 100 kilometre bike ride. He is an aircraft engineer and he works fulltime. He has just got special permission to do dialysis seven nights a week for eight hours a night. That is 56 hours of dialysis a week. He is practically jumping out of his skin he is so healthy and vibrant - and he looks absolutely amazing. He has been on dialysis now for 18 months and has no intention of getting a transplant at this stage. He is not on the list and doesn't intend to go on the list. You would absolutely never know he had a health problem at all. He is in his mid forties and recently married. His wife is so proud of him and how he is coping. His attitude in unbelievable. Certainly made me want to throw myself back into all my pre-dialysis activities. I don't have to do too many hours yet because I still have good residual function but when I have to, I think I will follow his lead. Maybe not seven nights a week but I could easily handle five and still have a life. Meeting him was just one of those really motivational moments for me. He was proof in the pudding that this disease can still not get in the way of achieving our goals.
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monrein
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« Reply #1 on: May 23, 2009, 04:57:01 AM » |
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Sounds good Cindy.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr. 2009
Second trx doing great so far...all lab values in normal ranges
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twirl
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« Reply #2 on: May 23, 2009, 05:04:58 AM » |
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WOW!
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willowtreewren
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« Reply #3 on: May 23, 2009, 06:46:16 AM » |
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That is amazing! He is fortunate to be able to do all those things.
I feel sad for so many folks who are drained by the dialysis and can't keep up. The big D affects people in so many different ways. He is one of the lucky ones for sure.
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.  |
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lola
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« Reply #4 on: May 23, 2009, 06:56:37 AM » |
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Cindy, I'm glad you met someone who is giving you such a positive attitude about Dialysis as I know you have had a rough start.  ps how's my shiny truck?  xoxoxox |
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st789
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« Reply #5 on: May 23, 2009, 07:09:59 AM » |
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Good for him. Very encouraging.
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swramsay
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My son, Scotland, is my heartbeat.
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« Reply #6 on: May 23, 2009, 08:04:28 AM » |
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He is someone that needs to write to CMS about the benefits of frequent dialysis. I wonder how his life will change when they bundle payments and he's no longer able to dialyze that much...like 3 days a week?
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JUST KEEP GOING. March 2009: NxStage Pureflow Home Dialysis 5-6 x's week Sept 2008: In center dialysis Sept 2008: Left kidney removed (bladder cancer) April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets. April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer) Feb 1994: Original bladder cancer diagnosis & beginning of this journey www.marykay.com/wramsay |
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swramsay
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My son, Scotland, is my heartbeat.
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« Reply #7 on: May 23, 2009, 08:10:54 AM » |
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He has just got special permission to do dialysis seven nights a week for eight hours a night. That is 56 hours of dialysis a week.
Do you know how he got 'special permission' to dialyze 7 nights/week? Was it to maintain the physical lifesytle he was able to create? Or, because of the level of physical exertion that he keeps, would it be dangerous for him to not get optimal dialysis? In other words, was the exception allowed in order to help him LIVE his life or was it to prevent his death? |
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JUST KEEP GOING. March 2009: NxStage Pureflow Home Dialysis 5-6 x's week Sept 2008: In center dialysis Sept 2008: Left kidney removed (bladder cancer) April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets. April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer) Feb 1994: Original bladder cancer diagnosis & beginning of this journey www.marykay.com/wramsay |
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jbeany
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« Reply #8 on: May 23, 2009, 08:15:25 AM » |
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'Cinda's in Oz - the health coverage is different in Australia than it is in the States.
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"Asbestos Gelos" (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter". A term used by Homer for invincible laughter in the face of death and mortality.  |
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swramsay
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My son, Scotland, is my heartbeat.
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« Reply #9 on: May 23, 2009, 08:26:33 AM » |
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Didn't know, thanks. I may consider moving there myself then if they screw up my health care here!  |
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JUST KEEP GOING. March 2009: NxStage Pureflow Home Dialysis 5-6 x's week Sept 2008: In center dialysis Sept 2008: Left kidney removed (bladder cancer) April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets. April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer) Feb 1994: Original bladder cancer diagnosis & beginning of this journey www.marykay.com/wramsay |
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KICKSTART
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« Reply #10 on: May 23, 2009, 09:01:44 AM » |
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I do dialysis 7 nights a week for 8 hours or do you mean he does Hemo ? But to be honest i think hes just having a 'lucky' spell. We all go through good times and bad , only 4 weeks ago i was out riding every day (very demanding) and now i cant even be bothered to clean up ! Good luck to him while it lasts anyway  |
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
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Lucinda
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Life is great!
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« Reply #11 on: May 23, 2009, 07:26:12 PM » |
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He is doing hemo seven days. Another lady is doing four hours every other day and she has been on dialysis for five years and in her sixties and in top nick. I do think we are lucky over here in that we pay absolutely nothing for our dialysis treatments. The only expense I had for doing it at home was the plumbing. You guys have it pretty tough over there with your health system. There is hardly any paperwork attached to dialysis over here. I think we are very lucky to have the system we do. Mark had to get special permission for the extra day because of the extra expense to the government but because he is such a motivational bloke, they didn't give it a second thought before allowing him the extra day. Of course I pay private health cover as well which is a bit of a bonus if you want to travel. Also over here we don't have to have a partner to do home dialysis. In fact they prefer that we don't and we take control of our own health care. It is interesting that all the rules are so different around the world!
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