I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: plugger on January 22, 2007, 06:49:59 PM
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Hi,
My daughter is the one with kidney disease; the doctors seem to think she came down with the disease because of strep throat and spent some time on dialysis back in 2000. She now has a kidney transplant and has been doing fine (for the most part) with it. She is married now to a great guy and things are humming along.
So why am I here? I made the mistake of trying to educate myself about this field of medicine when she was diagnosed and ran into a group of people who gave me quite an education - darn them. Part of my enlightenment included the training - or lack there of - staff had. I know there are many fine techs in the dialysis field, but quality of their training can vary and some of us want to change that here in Colorado - that is why we have started a bill that will have a hearing on February 1st (see post in general discussion).
I don't know, I just can't seem to forget some of the people we met in the clinic. Relatively speaking, my daughter has been lucky and I think it would be appropriate to give something back - and well, we know transplants don't last forever.
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:welcomesign; Plugger!
I am glad you found your way here! I didn't know what other American site to suggest but I hope this one helps you get enough people backing you on that Bill to get it passed ;) :thumbup; Here should get it more noticed than on D&T City (http://groups.msn.com/DialysisTransplantCity/general.msnw?action=get_message&mview=0&ID_Message=6992&LastModified=4675607324413588193).
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Glad you found our community.
Tech training is so important, yet State by State, a person needs more certification time to be a hairdresser (1,600 hours) than a hemodialysis technician (0 hours). I hope you get your law passed.
:beer1;
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Hey Plugger,
Glad to see your introduction. I think it's great that even after your daughters transplant you are still advocating for proper training in the dialysis field.
I sure hope your daughter continues to do well.
Thought I would add this link for you Plugger,maybe you will find interest in this thread http://ihatedialysis.com/forum/index.php?topic=952.0
Sluff, Moderator
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:welcomesign; plugger!!
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Hi Plugger and welcome to our site.
Here is a link to your story in general discussion: http://ihatedialysis.com/forum/index.php?topic=2435.0
Sounds like you are quite active for the dialysis community even though your daughter has a transplant. Like you said, her transplant may not last forever and you want dialysis to be safe if she has to be on it again. I don't blame you there.
Best of luck with your venture.
Rerun / Moderator
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Welcome Plugger, good to have you aboard.
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Welcome to this very special community, Plugger. And I do commend your concern, not just for your daughter, but all those on dialysis.
I wish you much success in your fight. We don't have that problem in my country (British Virgin Islands) since we don't have techs - we only have nurses, and some of them even have masters and been well trained in this area. But I am with you and hope that your voices can bring about action.
Could you go to Transplant Stories, and tell us about your daughter's experience. It would be great if she could join us as well.
Bajanne/Moderator
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Welcome, Plugger! Thank you for championing the cause for dialysis patients. I wish all the time that I could do more to increase organ donations or make things better for people on dialysis, but it's so hard when you're on dialysis and limited in how much you can do.
Looking forward to hearing more from you, and best of luck on getting your bill passed! :welcomesign;
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Wow! What a great welcome! I do wish I could get my daughter to talk about her experiences on forums like this, but she has always seemed to want to block it all out as much as possible - at least she did when she was living at home. She blocks it and I won't shut up about it. She has always been compliant with her meds and when she was on dialysis though; but she looked like walking death when she was on dialysis and I used to bug her about asking the doc for more time with her treatments - that flew like a lead balloon (that girl can yell). I still believe more time is a big ticket to better health - but I'll stop before I get a cyber-yell.
But getting back to the business at hand, I wanted to mention we are giving the Colorado residents priority, but I'm sure Rep. Kefalas would still love to hear from others with a story to tell. My experience has been people don't like to show up at these dialysis parties - go figure. However I do think we are getting off to a good start. So if you get some time, maybe you could at least shoot John an email: Our dialysis party (http://ihatedialysis.com/forum/index.php?topic=2435.0)
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:waving; Hi Plugger,
I also have a daughter with renal failure - she was on dialysis for 3 years, just got a transplant from a good Samaritan one week ago! She was also not interested in sharing her experience, preferring to avoid dealing with it!
I will be interested to watch what you're doing. I too feel that there are not enough advocates for dialysis patients. Some of the patients respond well and can maintain their lives and health on dilaysis for a long time. But there are many others who shuffle in and out of life, existing but not really living with any reasonable quality of life.
Welcome - this site is wonderful and the folks here are great!
Karol
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Welcome :)
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Again, thanks for the warm welcome! Karol, it is great to hear your daughter got a transplant! I would have to say some of the happiest days of my life were watching my daughter just after her transplant - she didn't seem to take too well to dialysis.
I was thinking I could possibly give you the benefit of some of my daughter's experience. Over the years she has had problems with her creatine creeping up and I recall her doctor switching from neoral to prograf - and still she had problems. After she was married she started going to University hospital in Denver and the neph there switched her to myfortic from prograf and she improved a whole lot! I'm not going to say neoral and prograf are bad for everybody - my impression is different people react differently to meds, what works for one may not work for another. However I thought I would mention it if - God forbide - your daughter ever runs into something similar.
I guess we both know it isn't easy watching your child go through something like this, but I'm willing to bet you are going to see a big improvement!
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:welcomesign; Pllugger, we are honored to have you join us on this site as well as the advocacy work you are doing to improve care for those on hemo. Thank you !
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Welcome to IHD, plugger! :welcomesign; your daughter's certainly lucky to have support as good as yours! :)