|
krismimo
|
 |
« on: December 06, 2012, 07:54:18 PM » |
|
Hey all I have been gone a minute and I'm sorry about that and I know I missed a lot while I was away. I just wanted to know how everyone is doing in their transplant journey?
|
|
|
|
|
Logged
|
|
|
|
|
okarol
|
|
« Reply #1 on: December 06, 2012, 08:26:03 PM » |
|
Jenna is wait listed at 2 centers, but with 100% antibodies we'll need a miracle. Here's her facebook, I try to update it often. Still looking for a donor. https://www.facebook.com/WantedKidneyDonor |
|
|
|
|
Logged
|
|
|
|
|
jeannea
|
|
« Reply #2 on: December 07, 2012, 03:43:52 PM » |
|
I had my 2nd transplant this March. I'm doing well most of the time. My white blood cells are too low right now. And this kidney must be young. I think I'm going through puberty again but with less acne thank goodness.
|
|
|
|
|
Logged
|
|
|
|
MommyChick
Full Member
 Offline
Gender: 
Posts: 325
Me & my precious Miracle !!!
|
|
« Reply #3 on: December 07, 2012, 06:25:23 PM » |
|
I'm hanging in there! Been on the waiting list 7 yrs & for the last year or two I keep getting told I'm at the top of the list... My problem is that my antibodies are 99% & none reducing... so its very frustrating! I'm currently in the process of getting listed at a second hospital who deals specifically with high antibodies. I hadnt looked else where sooner in hopes that I would have received my 2nd kidney by now! Also I'm on the paired donor list. Wishing & hoping everyone else is doing good! Good Luck & God Bless!  |
|
|
|
|
Logged
|
~ Hello All, My names Marna ~
- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
- End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
- Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd *** I finally received my kidney!!! ***
- Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
|
|
|
Ladystardust24
Full Member
Offline
Gender:
Posts: 115
Keep Calm, Carry on.
|
|
« Reply #4 on: December 08, 2012, 12:10:24 AM » |
|
Quick question to those with high antibodies... Can they not do Theraputic Apheresis?
It's been two years since my transplant. I'm doing pretty well. Take my meds, watch my body. Doing well overall.
|
|
|
|
|
Logged
|
Dialysis 99-01
transplanted 01-04
Dialysis 04-10
Currently Transplant 10-22 +!
Very grateful for my Ziggy Bean.
|
|
|
|
jeannea
|
|
« Reply #5 on: December 08, 2012, 12:01:11 PM » |
|
They told me they will not do the plasmapharesis until you are near the top of the list. The treatment only lasts about 6 months then they have to do it again.
|
|
|
|
|
Logged
|
|
|
|
|
okarol
|
|
« Reply #6 on: December 09, 2012, 01:11:45 PM » |
|
They told me they will not do the plasmapharesis until you are near the top of the list. The treatment only lasts about 6 months then they have to do it again.
That's the disadvantage to waiting for a deceased donor. The coordinator here said you have to have been a near miss twice (matched for a transplant but then antibodies are the issue) before desensitization will be covered by Medicare. Anyone have experience with this? |
|
|
|
|
Logged
|
|
|
|
|
Sax-O-Trix
|
|
« Reply #7 on: December 09, 2012, 04:15:59 PM » |
|
Interesting. I had to have Plasmapherisis following my transplant due to the development of HUS. Here I was thinking that I had the added benefit (besides escaping with my life) of having my anti-body level possibly lowered. I didn't realize it was only effective for 6 months! I guess if I had to do the Plasmapherisis again in order to get a transplant, I would...
|
|
|
|
|
Logged
|
Preemptive transplant recipient, living donor (brother)- March 2011
|
|
|
|
jeannea
|
|
« Reply #8 on: December 09, 2012, 05:34:21 PM » |
|
I actually have no experience. They told me the 6 month thing when I asked and said I was 2 years away. 7 months later I had my transplant with no plasmapharesis. I guess it was a match. I know I was lucky. I would have done the treatment if I had to.
|
|
|
|
|
Logged
|
|
|
|
YellowRose
Jr. Member
Offline
Gender:
Posts: 51
|
|
« Reply #9 on: December 10, 2012, 05:09:09 PM » |
|
Had my second transplant at Sept 13, almost 3 months now. Other than having a high fever last 2 weeks ( 2 weeks after surgery and doctor can not figure out why ) at one point.
I am doing really good, have not feel this good for a long long time. And doctor is very happy with all my lab results as well. Counting my blessings.
-Rose
|
|
|
|
|
Logged
|
Dec 1993 start with CAPD
May 1995 1st transplant
Jan 2007 start with CCPD
April 2011 start with Hemo
Sept 2012 2nd transplant
|
|
|
|
krismimo
|
|
« Reply #10 on: April 02, 2013, 07:15:09 PM » |
|
Hey everyone! Sorry for the delayed response. I hope everyone is doing well. Hubby is at 8 months post transplant we had a few bumpy roads his numbers are still adjusting but he is healthy.
Sooo how are you doing?
|
|
|
|
|
Logged
|
|
|
|
|
I Hate Dialysis Message Board
Author
