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  • I'm surprised they would have you use it so soon.  When I had mine put in it had to be exercised for months before it was ready to be used.  I would tie a tourniquet around my arm and squeeze a special rubber ball they gave me to strengthen the fistula.  I was already on dialysis at the time via a catheter so I would just do the exercises while I was in the car, or on the machine, or really anywhere several times each day.  That built up an excellent fistula which is still working today many years after transplant.

  • Well 2 days before Thanksgiving I went to have a fistular and it doesnt work. So this Tuesday I go back to the hospital to have a graft placed. My vains are not the best but they are working with what that have. Not really looking forward to this road ahead of me, but any time I start to think about it and get emotional I think again and say I cant spend the rest of my life thinking doom and gloom, so I think of the joys and the blessing instead and do things I enjoy. 

    I did make appointment for another hospital that is not in NYS so I can get on another transplant list. I was told by my doctor in NYP hospital that only 200 transplants were done last year in NYP and of those 100 were live donors. Which is not really an option for me being only my sister in law has offerd and she is not a match due to her small she could not be in the exchange pool. So I will get on an additional list. 

    My feeling is you have to be your own advocate, and just like anything else in life you have to go figure it out ie help your odds be better. 

    Just thought I share in case anyone else is out there in a similar situation. 

    Wishing you all the best. Rita

  • Livecam, I have never taken a cruise. I love the ocean, but to me I rather get on a plane or a train or a car to get where I want to go so I can enjoy the sites. When I was on dialysis I did book long weekends like you go friday for dialysis before I left for vacation and return for Monday night dialysis or a booked at a center close to where I was vacationing. 

  • Would you cruise on Carnival or other lines they own?  I took a couple of very carefully timed cruises while I was on dialysis.  One was a 3 day and the other a 4 day with dialysis just before and just after the cruises.  If I'd been stuck in the ocean like the Triumph was I'd be dead.

  • Dialysis!! Been there done that! Ask questions! 

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This is a place for those who are about to begin dialysis or those who are currently on dialysis or has someone that is close to them on dialysis. It is a place for freinds to come together to share, learn and feel that support.  

This group idea was inspired by Rita

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