dialysis- to do or not to do

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aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 7/18/2011 7:03 AM (GMT -6)   
I had an apt with my nephrologist on Friday. I asked him what my prognosis is and he thought about a few minutes and said if things continue the course they are, dialysis will be in less than 2 years. If I stop the medication (myfortic) dialysis would be probably 6 months-a year. But the benefit of diaylsis would be no medications except prednisone. He also then said that if I was on dialysis for 2 years and things quieted down I could do a transplant and USUALLY when a transplant will not have lupus attack a new kidney or at least not cause it to go ESRD. So I guess I have a lot to think about.
 
 Do I stop the medication and feel like a human being again or do I continue on the medicaiton and possibly avoid dialysis for a few years? If dialysis is most likely going to happen, why not get it started and might get off it sooner? Oh, BTW, I have been on Cellcept/Myfortic for a month now and side effects continue to get worse. He does not think prednisone alone will hold the lupus out of my kidneys. He has left this choice up to me and I will need to have a decesion by Friday. I think I know where I am headed but just wanted some other peoples thoughts on this issue.
Just some of my thoughts, thanks for reading!!

Amy
Lupus Moderater
Myfortic, Prednisone, carvedilol, Eliphos, furosemide, sodium bicarbonate, Celexa
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

AZ N8ive
New Member


Date Joined May 2011
Total Posts : 11
   Posted 7/18/2011 8:11 AM (GMT -6)   
If you hv up to two years, why the rush to decide?
RA, Lupus, Nutcracker Esophagus
Plaquenil, enbrel, voltaren, prn medrol, fentanyl, buspar, approved for benlysta in July, 2011

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 7/18/2011 10:03 AM (GMT -6)   
Because the medications that they have me on make me miserable, I mean so miserable I am considering dialysis.
Amy
Lupus Moderater
Myfortic, Prednisone, carvedilol, Eliphos, furosemide, sodium bicarbonate, Celexa
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 7/18/2011 10:43 AM (GMT -6)   
How often would you have dialysis? How long would it take? What would your quality of life be compared to what you have now with the meds you hate?

No need to answer us, just things to consider. Would diet/exercise be restricted more/less than currently? Would you be able to travel at all? (Can you travel now w/meds?)

I don't know what kinds of side effects you are having with the Cellcept -- all I really noticed was some hair coming out, and I thought that was a pretty cheap price to pay for how it helped my cognitive dysfunction.

Best wishes on making your decision. Only you know in your heart what is right for you, I fully support you in whatever you decide.

Hugs,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/18/2011 4:41 PM (GMT -6)   
My brother has been on dialysis for nine years now due to Ecoli destroying them. He has had his port clog many times and had surgery to unclog or change to a new place. He takes a large handful of pills every meal. He has to sit connected to a machine for five hours a day. The longest he can go without dialysis is two days and then he starts feeling ill again. He has passed out several times after dialysis treatment due to drop in blood pressure. He is type O- so there is few kidneys available out there for him.

I just want you to know what you may face. It is best to walk into this with open eyes.
Joy
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