|
Fox_nc
|
 |
« Reply #50 on: August 18, 2007, 01:41:16 AM » |
|
I think i'm the only one here on Rapamune..
I was on Rapamune for the past year, but they don't use it here for new kidney transplants anymore. My neph likes it, but the transplant surgeon doesn't. I think he said something about tissue degeneration. It still amazes me what is wonderful in one place is crap somewhere else. I liked it way better than Neoral and so far it beats the new crap. I didn't have many side affects from the the Rappa, but they new stuff causes major reflux, yuk! |
|
|
|
|
Logged
|
Being normal is not necessarily a virtue. It rather denotes a lack of courage. -- from the movie Practical Magic
|
|
|
TynyOne
Newbie
 Offline
Gender: 
Posts: 46
This is how I feel on Friday nites during dialysis
|
 |
« Reply #51 on: August 18, 2007, 01:24:18 PM » |
|
How long were each of you in surgery for the transplant?
Tammy
|
|
|
|
|
Logged
|
|
|
|
|
angela515
|
|
« Reply #52 on: August 18, 2007, 08:04:12 PM » |
|
I think i'm the only one here on Rapamune..
I was on Rapamune for the past year, but they don't use it here for new kidney transplants anymore. My neph likes it, but the transplant surgeon doesn't. I think he said something about tissue degeneration. It still amazes me what is wonderful in one place is crap somewhere else. I liked it way better than Neoral and so far it beats the new crap. I didn't have many side affects from the the Rappa, but they new stuff causes major reflux, yuk!
I agree... one city loves one thing another city hates that one thing,  My surgeon loves Rapamune, so I remain on it. I have no complaints about it as of yet.. and I agree, better than Neoral.. I was on that first transplant. Why were you taken off of it? Due to the possibility of tissue degeneration? |
|
|
|
|
Logged
|
Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
|
|
|
|
Fox_nc
|
|
« Reply #53 on: August 19, 2007, 06:31:22 AM » |
|
How long were each of you in surgery for the transplant?
Tammy
I was in about 4 hours and my donor a little less. I had complications which made it last a little longer than expected. They basically had to do the surgery twice from what I hear. Why were you taken off of it? Due to the possibility of tissue degeneration?
They took me off the Neoral when I went into rejection last summer. They weren't real sure what caused it - my graft failed after 12 years. Apparently the Neoral can cause it, so they switched me to the Rappa. I think they switched me off the Rappa after the surgery just because they think the Prograf and Cellcept work better. My question is why no one took me off Neoral once they decided it wasn't good enough to give to new transplant patients. They say 'if it ain't broke, don't fix it' but I can't help but wonder if I had been switched earlier if I wouldn't be recovering from surgery right now. . . |
|
|
|
|
Logged
|
Being normal is not necessarily a virtue. It rather denotes a lack of courage. -- from the movie Practical Magic
|
|
|
|
Romona
|
|
« Reply #54 on: August 19, 2007, 05:53:19 PM » |
|
 Glad to hear things are going well. Your creatin is great so soon!
|
|
|
|
|
Logged
|
|
|
|
|
Jaybird
|
|
« Reply #55 on: August 23, 2007, 09:18:33 PM » |
|
How'd you feel gettin the JP pump taken out? Mine hurt like HELL! Worst pain i ever had. They didn't trim mine, so it was full length inside me. I got out of the hospital in 3 days, but i had to go back in 2 days later for 5 days because of a complication with my ureter.. I chose not to have a stint placement if possible and it backfired on me. Now i got a stint and i'm feeling much better.
However I am in more pain than normal because I"m going prednizone free. They say that it helps with pain as well as anti-inflammatory. Hope i made the right choice. They say you have a 5% chance of rejection with prednizone, and about an 8% chance without it. So I took the 3% chance to stay off one more med with so many side effects.
Good luck and STAY WELL!
Jaybird
|
|
|
|
|
Logged
|
|
|
|
|
Fox_nc
|
|
« Reply #56 on: August 24, 2007, 05:18:09 AM » |
|
I still have my JP . . . but thanks for the heads up on removal. I'm only draining about 10cc a day right now, but they want it down to zero before they remove it. I tried to get out of the stint b/c of another problem I have that makes it painful for me to get a folly. They still put it in, so they will have to knock me out to get it out. I am back on the predizone, but they've already started to taper it down since I'm doing so good. My husband lovingly tell me that they make me cranky, so he can't wait for them to be gone again. He is doing well and had his staples removed yesterday. He's still in a little pain b/c they had to remove part of a rib. The hospital and transplant team haven't exactly made him feel special, so I'm making sure that he knows how special I think he is. How is your donor doing?
|
|
|
|
|
Logged
|
Being normal is not necessarily a virtue. It rather denotes a lack of courage. -- from the movie Practical Magic
|
|
|
|
Jaybird
|
|
« Reply #57 on: August 24, 2007, 06:27:00 AM » |
|
If the knock you out to take out the jp drain you will be lucky! Man i wish they did that for me, but it was about a 10 second procedure that felt like hell. heh Short pain, was over quick.. But man it hurt.
My mom only had suture strips instead of staples. She was in a lot of pain initially because of the gas they use for liproscopic. But she's feeling better than me now.
I also had a hard time peeing. I just started being able to urinate easier last night. Its getting easier everytime now.
Good luck with everything. And tell your hubby that I think he's very special too.
Jaybird
|
|
|
|
|
Logged
|
|
|
|
|
goofynina
|
|
« Reply #58 on: August 24, 2007, 11:11:29 AM » |
|
It is so awesome to read both of your stories, i am so glad your recoveries are going well and your donors are doing fine  Keep up the great work you two and please keep us posted on how your doing, it is very inspirational  |
|
|
|
|
Logged
|
|
|
|
|
George Jung
|
|
« Reply #59 on: August 25, 2007, 07:08:17 AM » |
|
Congrats and bets wishes to you and your husband. Did you say what hospital you were at?
|
|
|
|
|
Logged
|
|
|
|
|
paris
|
|
« Reply #60 on: August 25, 2007, 07:27:56 AM » |
|
George--good to see you posting! Foxy is in our area - her transplant evaluation was at Duke, but don't know if that is where the transplant took place, but I imagine it did.
|
|
|
|
|
Logged
|
 It's not what you gather, but what you scatter that tells what kind of life you have lived. |
|
|
|
Amanda From OZ
|
|
« Reply #61 on: August 26, 2007, 05:01:11 AM » |
|
Congrats on your transplant!! This has been a good transplant year for IHD Members. Amanda xxoo |
|
|
|
|
Logged
|
|
|
|
|
Fox_nc
|
|
« Reply #62 on: August 26, 2007, 06:06:20 PM » |
|
George--good to see you posting! Foxy is in our area - her transplant evaluation was at Duke, but don't know if that is where the transplant took place, but I imagine it did.
I actually wound up doing mine here located here in Eastern, NC - Pitt County Memorial Hospital. They don't take my insurance, but they had a grant program through East Carolina University called "kidney aquisition" that paid for 100% of my donor's cost and almost 100% of mine. My insurance company called about a month before hand and nicely "asked" me to go to Duke. "It's oly 100 miles away" she says. I told her my date was set, but she thought we were just starting. She couldn't understand how I had a surgery date but no one had submitted a claim. It took me a minute to get her to understand that no one was gonna ask them to pay for it. I'm not sure if Duke has the Kidney Aquisition grant thing or not, but since Pitt Memorial is only 10 miles from my house, it worked out best for me. Now I don't have to drive to Durham twice a week for follow-ups. Duke is one of the best in the country, so going there wouldn't have been all that bad, but I'm happy. The only downside is that they don't take the donated kidney with laproscopy here, so my husband has about a 6 inch scar on his side. He says I'm worth it  |
|
|
|
|
Logged
|
Being normal is not necessarily a virtue. It rather denotes a lack of courage. -- from the movie Practical Magic
|
|
|
|
Romona
|
|
« Reply #63 on: August 26, 2007, 06:22:43 PM » |
|
Glad you are doing so well!
|
|
|
|
|
Logged
|
|
|
|
|
Jaybird
|
|
« Reply #64 on: August 27, 2007, 07:00:40 AM » |
|
Tell your hubby, Chicks dig scars. My wife likes my new one. Also, he's getting to miss out on all that gas that comes with liproscopy!  Jaybird |
|
|
|
|
Logged
|
|
|
|
|
Fox_nc
|
|
« Reply #65 on: August 27, 2007, 08:44:54 AM » |
|
Oh he knows I dig his scar  Just got back from today's checkup and I'm still at 1.1  |
|
|
|
|
Logged
|
Being normal is not necessarily a virtue. It rather denotes a lack of courage. -- from the movie Practical Magic
|
|
|
|
angela515
|
|
« Reply #66 on: August 27, 2007, 12:13:56 PM » |
|
Fox
|
|
|
|
|
Logged
|
Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
|
|
|
|
Fox_nc
|
|
« Reply #67 on: August 27, 2007, 01:14:19 PM » |
|
I know, right? I'm suprised it hasn't waved since I was discharged, but David just says "I told you it was gonna work" His faith suprises me sometimes.
|
|
|
|
|
Logged
|
Being normal is not necessarily a virtue. It rather denotes a lack of courage. -- from the movie Practical Magic
|
|
|
|
Sluff
|
|
« Reply #68 on: August 27, 2007, 02:18:09 PM » |
|
Glad your at the 1.1 club FoxNC.
|
|
|
|
|
Logged
|
|
|
|
|
tamara
|
|
« Reply #69 on: August 27, 2007, 04:47:03 PM » |
|
|
|
|
|
|
Logged
|
ABO Incompatible Transplant from my loving Partner 23/10/07
after over four years on the D Machine
Dialysis Sucks and Transplants Don't.................So Far Anyway !!!!!
|
|
|
|
Jill D.
|
|
« Reply #70 on: August 27, 2007, 07:22:53 PM » |
|
|
|
|
|
|
Logged
|
Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
|
|
|
|
I Hate Dialysis Message Board
Author
