I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: tyefly on May 28, 2011, 09:39:34 AM
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just a matter of time... I was in the transplant center for a Meeting with the main Neph to get me approved at legacy in their Paired donation program for transplant.... this guy is a big wig.... but very nice...but I was upset with what he had to say about Dialysis and how most of us dont live long and that transplant is our only hope.... he said that most in center people dont make it to transplant.. they usually get too sick to stay on the list.... I told him that I was doing D at home with nxstage and that I am doing nocturnal.... he said he didnt know about any of that and that there were no studies to show if any of the home stuff making any difference... People only have a few years and then they get usually too sick to go thru with a transplant... I was shocked... He said that I looked pretty good for being on D for a year and half.... and said that we better hurry and get a transplant before anything happens.... Its hard enough to deal with all of this with out hope and optimistic attitudes .... I need for them to be strong ..... I have alot of hope to get thru all of this... it seems like they look at you with pitty and at any moment you will just die.... I am proud that I am doing D at home and I am doing everything I can to be healthy... this is not all for nothing.... really......
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You went to the Transplant Center to be evaluated for a transplant - not affirmation of how well you can do on dialysis. Transplant nephrologists, and especially those at the better programs, have a 100% belief in transplantation as the best option for patients to lead a normal life. All their time, energies and research are towards that end. Do you expect them to keep up with nx stage and other home therapies?
Also, you have to remember their frame of reference comes from the fact a good number of patients they see come from the incenter environment. Therefore, they look upon dialysis as just a holding pattern, a limited one at best.
Don't expect dialysis pep talks from your transplant program. IHD is where to get that support. You've visited this site long enough to know what can be expected of good dialysis treatment at home from Hemodoc, Peckham and others. Doesn't that give you enough confidence without needing to hear it from a transplant program?
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Tyefly, my husband has been on dialysis for over 14 years!! He is still healthy except for kidney failure!! You can live on dialysis for many years. Nocturnal dialysis is the best dialysis you can get!! Look at Zach who has been on dialysis a lot longer than hubby. He only went on the transplant list lately.
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Just because the nephrologist was a "big wig," dosen't preclude him from being a big jerk.
And a terribly uniformed one at that!
8)
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Some people know only their trades... Its a shame though that he doesnt branch out and learn a bit more besides his transplant stuff or!!!!!!!!!!!!!!!!! hush up.. It's just not right for him to spread wrong info like that..
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I agree, there's a really different mindset between nephrologists and transplant surgeons - and don't forget, they are all just "practicing" medicine. Keep up what you're doing - you've always done a great job of being informed and taking action to stay healthy - you probably actually know more than the big wig!
:bow;
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Mindset of a doctor - Salesman, Pitchman, Sell, Sell Sell what ever service they are providing to get you in so they can have basically your money.
Tyefly, take it with a grain of salt and shrugg it off. If he wasn't personable, I would then say go to another transplant center. All he did was to try to pursuade you more by scare tatics to come to them to have your transplant. The proper thhing he should have said was that he should look into doing a study about home dialysis even though he may not follow thru, but should.
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Don't be too hard on the doc, he is just looking at it from his own perspective and he has data to back up his claims of better survival with transplants, to a significant degree. Although there seems to be some improvement in mortality for all ESRD once they can get passed the first year.
edited: Granted, the chart below shows a certain selection pressure for high survival rates among transplants because generally ESRD patients don't go directly onto transplant and that "2007 ADR, even with more detailed adjustments for severity of disease, the first-year death rate for hemodialysis patients shows little change over the last nine years".
http://www.usrds.org/2008/view/esrd_06.asp
(http://ihatedialysis.com/forum/index.php?action=dlattach;topic=23163.0;attach=18844)
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The grim fact is that the death rate of 45 to 54 year old patients on dialysis is EIGHTEEN times that of the healthy population. In my view your nephrologist was giving it to you straight, something I'd much prefer to someone who tells you that some have survived for years etc. It's only by being realistic that you can make the right descisions.
I've not seen Greg's statistics before but they support the ESRD mortality statistics I've seen.
Cardiac causes over 50% of deaths. 60% of these are sudden, due to arrhythmias, 30% heart failure with left ventricular dialation, 10% MI (heart attack)
All you can do is to take care and concentrate on being one of the few who outwit the Grim Reaper. Erm... well, we won't outwit Him, we'll only be able to avoid Him for a little while. :(
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I would not take these remarks too seriously.
I was told in August 2006 - by a big noise in nephrology - that I definitely had only 6 months until Dialysis.
Then another “big noise” gave me only six months until Dialysis in February 2008.
Luckily I am still pre-Dialysis without any symptoms yet.
If I would have taken any of these “big noises” really seriously,
I would be a nervous wreck by now.
Best thing is, to patiently listen to the advice
and then try your best to survive all the same.
Good luck from Kristina.