liver transplant

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john hatch
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/15/2008 6:41 PM (GMT -7)   
looking for transplant chat room  john hatch

I recieved a new liver Nov. 1, 2007. I am still recovering but feel much better. I read posts but am looking for an active chat room for people with transplanted organs. Please post sites or email locations.  John


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/15/2008 8:23 PM (GMT -7)   
John,

Have you gone through the transplant center you got your transplant at??? I know the transplant center we are going through has a support group, so possibly some direction for a chat group or something?....just a thought. Congratulations on getting transplanted....I know you had a long road getting there....

john hatch
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/16/2008 8:13 AM (GMT -7)   
Thanks for the advise...my liver transplant was done at Henry Ford Hospital in Detroit...I am sure they have support groups, will check...I am still looking for national or international group...took me two years to get a liver...feeling much better but not back to work yet. How are you??
I recieved a new liver Nov. 1, 2007. I am still recovering but feel much better. I read posts but am looking for an active chat room for people with transplanted organs. Please post sites or email locations.  John


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 9/16/2008 1:37 PM (GMT -7)   
Hi John,
 
My husband was transplanted on 8/12/08.  He had been on the Liver Transplant list since 2/09.
He was so ill at the end that he was close to dying.
 
Right now (4 weeks post-op) he is still in major pain and is shaking and not eating or sleeping well.  Transplant dr says this is very typical.
 
I know that he can't type right now.  He can't even sign his name.  But I will talk to him about - at some point in the future - getting involved in this forum.  Not sure he would do it, but I'll ask.
 
He had his transplant at Rush University Hospital in Chicago.
 
Take care and nice to hear from someone else who has made it "to the other side".
 
It sure is rough gettiing there, and a lot of good folks (and spouses of folks) on this forum are patiently waiting.  God Bless 'em.
La Bunna

"Courage is the art of being the only one who knows you are scared to death"


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/16/2008 3:20 PM (GMT -7)   

La Bunna, I know your hubby wasn't first put on the transplant list in '09, since we're not there yet.  Could you correct that, please?  Thanks!

Hugs,

Connie

 


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 9/16/2008 4:00 PM (GMT -7)   
Oops! Excuse my "happy fingers"

Hubby had been on the Liver transplant list since 2/08. Transplant was 8/12/08.

Sorry
La Bunna

"Courage is the art of being the only one who knows you are scared to death"


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/16/2008 5:47 PM (GMT -7)   
Hi John, Welcome to the forum. Congratulations on receiving your transplant. I am glad you are feeling better. I can only imagine how rough it has been. It is a long road from what I hear. My husband is not sick enough to be listed yet. I have been coming here for awhile for knowledge and support. Everyone here has been so kind and helpful. I will include you in my prayers.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/16/2008 5:55 PM (GMT -7)   
Hello John we do have members who's had transplants. But to tell you the truth once they get transplanted and get better they make up lost time and start living again. Which is great.

Hopefully La Bunna husband will consent to chat once he's feeling better.

We had one member get transplanted a few months ago. I will check and see if his email address is listed. If so , I'll see if he will start posting again.
I sure you two will hit it off good.

If not you can still post here. Everyone would love to hear your story if you care to share............

Take care...........and congrats one getting transplanted.

smilewinkgrin
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/16/2008 9:11 PM (GMT -7)   

La Bunna, thanks!  I know that was the longest 6 months of both of your lives!

Hugs,

Connie


silvermint
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/17/2008 1:35 PM (GMT -7)   
My Mother had liver transplant six years ago,she still not fully recovered but is getting there.
She now has diabetes from the operation and she still needs lots of our help,but we are so lucky to have her with us.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/17/2008 4:14 PM (GMT -7)   

Silvermint, I'm glad your mom was able to have a transplant that saved her life.  However, she has already healed from that, if it's been 6 yrs.  Also, an operation doesn't cause diabetes.  It may have kicked in around the same time, but operations don't cause diabetes.  I suggest you research these things.

Connie


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/17/2008 8:45 PM (GMT -7)   
John,

I truly am happy that you received your transplant. Suggested the transplant center as a start, but I agree, this forum may be a good place for you to start. My husband is currently on the waiting list...his brother was successfully transplanted (also with a liver) 18 years ago and is doing FANTASTIC!!! So, there's a success story for you!!! We are hoping that one day, we will be saying that we are the ones 18 years post transplant, but in until then, we will stay the course....which is a very bumpy one, and I pray that you are doing well!!

ABM
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/7/2008 3:51 PM (GMT -7)   
John, congratulations on your liver transplant. My husband had his liver transplant on June 24, 2008. He has had a few complications. His incision has opened up twice in two different places, and he has had to return to surgery to repair the hernias. His last surgery was a little over three weeks ago. He is having the problem with low magnesium. I know this is not uncommon with transplant patients, but even the doctors and nurses are having a hard time understanding why he seems to be having more trouble than most. He takes 3600 mg of mag oxide each day and still has to go in twice a week to get a mag infusion of 4 grams each time. This takes about 4 hours each time he has to have it. I would like to hear stories from others who have had this issue to deal with and how long it has taken to even out. He is also confused some of the time, and his memory is not good. From what I've read and from what the doctors way, I believe this is caused by the overabundance of anesthesia due to the three surgeries in three months AND by the low magnesium. I'm just hopeful that it gets better over time. I realize three months is not very long.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/7/2008 6:49 PM (GMT -7)   
Hello ABM and welcome to HealingWell,

I'm glad your husband got his transplant, but sorry he is having some issues. Did your husband take a magnesium supplement before his transplant? I know they had my husband on it. I haven't hear of others having that issue.

Please start a new post so that our other members don't miss you. With so many posts it's easily done..........

John are you still out there? How are you doing? Hope you're healing fine.....

Thoughts and prayers to all..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


ABM
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted Today 2:32 PM (GMT -7)   
Silvermint. Your mom may not have contracted diabetes from the operation, but it IS possible to get it because of the anti-rejection medication. That's what the doctors told my husband; and because of that, he is taking Metformin to keep his sugar down. That could be what happened to your mother.

ABM

ABM
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted Today 2:39 PM (GMT -7)   
La Bunna . . . I wish your husband the best in his recovery. My husband had his transplant June 24, 2008, and he is still having some issues. He was on the list for 2 years before he was transplanted. He has a chronic blood magnesium deficiency and can't seem to hold onto the mag supplements he is taking. He also has to have a mag infusion twice a week for four hours. Most recently, he had to have another stent put in because there was an obstruction preventing the bile from draining from the liver. Apparently, where they attached the new liver to his existing bile duct there was some scar tissue forming which created the obstruction. He still has trouble sleeping and does not feel well most of the time. I'd be interested in following your husband's progress since he had his transplant so close to the time my husband had his. It has been nearly six months, and we were hoping that he'd be doing better by now. Best wishes to you and your husband. It is not an easy road to be sure.

ABM

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 12/11/2008 12:39 AM (GMT -7)   

John, Congratulations on your transplant! I have not posted here in a long time. But I have spent some time catching up on the post. My husband had his transplant March 16th, 2007 at UAMS in Little Rock AR. He is doing very well and is actively seeking employment. He did shake alot after the transplant and had trouble with sleep. I know it was the prednisone he was taking. He was weaned off of it in 3 months. The anti-rejection drugs can also cause this. It does take a few months for their body's to get accustomed to the new drugs and the "precious gift of life". My husband had diabetes prior to the transplant, it was liver induced. He still has diabetes now, it is controlled with Lantus. It was also found that his old liver did have cancer, when it was biopsied from transplant.  He had Pet Scans every 3 months post transplant for a year. Thankfully they have all been negative and now he does the Pet Scans every 3 months. He had to have a hernia repair, caused from the ascites. He also has HepC and will have to do treatment. The hepatologist is hoping to wait for a new treatment, which he believes will be approved in 2012.  While the road to recovery may seem long, the road getting to transplant was harder! My husband is a walking miracle and a day does not go by without thanks!! This forum helped me get through some of the darkest days while we waited!! Thank-you Pink Grandma and Connie!

Teresa


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/11/2008 8:52 AM (GMT -7)   
((((Teresa)))), you don't know how happy seeing you post has made me. I am so glad that your husband is doing well. Give him a big hug from me. Friend, I have missed you more than you know. I think of you and your husband often. How are you doing? Been catching up on living.......huh! Me too.
When I think of the families that have gone through the transplant it makes my heart lighter somehow.
I know that it's a whole different ball game the I didn't get a chance to play, but when others get to play it ....it gives me great joy.

Please continue to post occasionally when you can. You just made my day. I'm doing double back flips here.......but this time for joy and not for the all the doctors.

Hope your holidays are wonderful.

Love and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/11/2008 3:13 PM (GMT -7)   

Hi, Teresa!!  So good to see you posting and know that your husband is doing so well.  And finding out that the old liver was cancerous...whew!  I am still hanging in here and doing fairly well, though very tired from having to go out of town over the weekend and trying to play catch-up at home.  And Christmas is nearly upon us and I haven't decorated yet or finished shopping...nevermind wrapping and sending!

I don't have to go back to Mayo for blood work and scans until March.  So it's good to get a little break.  I'm going to have to ask my hepatologist about the new hep C treatment.  Don't know if I can hold out that long (2012), but am not really keen on doing the current treatment.

Don't be a stranger here!


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 12/11/2008 10:39 PM (GMT -7)   

Pink Grandma, I have missed you too!!! There is just so much to tell you! Guess I am going to have to e-mail you to catch up! I was glad to see that you were moderating here! Your doing a great job!

Connie, I just got my Tree up today and still have half of my Christmas shopping to do. I meant to say...I just saw on the Pet Scans 3 months..it is every 6 months now. I am hoping Mark can hold out for the new treatment, his viral load is 20 million now. Normal HepC patients have a 50/50 clearance, Transplant patients clearance rate is lower. So we are praying he can wait that long. So far no damage to the liver yet. He has lab work every other month now. He now has annual check-ups at the transplant clinic. I actually think he is healthier than I!!!

Hope that you all have a Wonderful Christmas!!!

Teresa


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/13/2008 6:25 PM (GMT -7)   
Hi Teresa, Just wanted to thank you for posting an update on your husband. It really helps alot to hear from people that have experience with the transplant and post transplant process.
Butterflythree
 
There is always hope!


Ranger
New Member


Date Joined Oct 2007
Total Posts : 12
   Posted 12/15/2008 11:43 PM (GMT -7)   
Haven't posted in awhile, but have read posts. Had my transplant 12-20-07 at UAMS also. Doing well with less than a week for my one year anniversary. Never thought I would have seen this day, and am so thankful. I do have recurring hep c, which I will be seen next week to see about starting treatment. My doc doesn't want me to wait any longer to get started. But am thankful for all that has happened. And GOD bless my wife for all she has done to get me to where I am today. After about five months post I talked her into taking a girls weekend to the beach, she was relunctant to go, but she needed the time off. She had been working so hard to keep me going. I pray for each and everyone to be blessed as much as I.
   Ranger


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/15/2008 11:52 PM (GMT -7)   
Hi Ranger, thanks for the update. Did this past year fly by for you????

What a neat treat for your wife. Your absolutely right......she was probably in need of a weekend with the girls.

Good luck with your treatment. Hope that it goes well............

Take care........thoughts and prayers.....
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/16/2008 9:51 PM (GMT -7)   
Ranger, It is good to hear from you. I am so happy to hear that you are doing well. You give me hope for me and my husbands future. I hope that things continue to go well for you.

You will continue to be in my prayers.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/16/2008 10:02 PM (GMT -7)   

Ranger, that's great news that you are doing so well!!  yeah

Teresa, from my research, of the 50% who do clear the virus 25% relapse.  So it's really only a 25% success rate.  sad


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll

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