We have a liver

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exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/8/2009 6:51 PM (GMT -7)   
Hello Everyone. Well, we got the call last Monday at 4:00 AM. Didn't go into surgery until 4:00 PM. Lost a lot of blood due to scar tissue that they were not expecting but he came through it. Was off the ventilator by 1;00 pm Tues. Up walking by Wed and out of ICU by Wed evening. Kidneys were not doing good until today. Had a big set back today. Dr. thought maybe Hypatic Thrombosis. That scared me to death. Fortunately not the case. He does have a bile leak. They are going in Mon to try and stop it. Today was the hardest because he is so sick. Hopefully better tomorrow. Had both my daughters with me so that was great. I will try and check in more often in case anyone has any questions. I know when this journey first started I wanted to talk with someone that had a transplant. Thank you all for your prayers.

JoAnn

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/8/2009 7:43 PM (GMT -7)   
yeah yeah yeah yeah Wonderful news JoAnn. I am so happy for you and your family. I will keep him in my prayers for a speedy recovery.........Lot's of thoughts and prayers...........and a few flips to boot.
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 8/8/2009 7:50 PM (GMT -7)   

Woooo hooo!  FINALLY!  JoAnn, did you read LaBunna's post today?  She was saying a prayer that Jerry would get a liver soon and said she really felt in her bones that it was near.  You guys will have a rough time ahead, but hopefully it will all be worthwhile and six months down the road you will be writing a post like LaBunna's about how WELL Jerry is!

My prayers are with Jerry for a good recovery.

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 8/9/2009 7:37 AM (GMT -7)   
JoAnn, what great news! I am so happy that he got the transplant. These bumps in the road to recovery will pass and we will pray that he does wonderfully. Kisses and hugs to you both.

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 8/12/2009 10:40 PM (GMT -7)   
Just checking in with you Joann to see how Jerry's doing.  Lot's of 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.


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 8/13/2009 2:51 AM (GMT -7)   
          Dear Joanne and Jerry  tongue   So very happy to hear the news. This news really boosts my spirits. I have been feeling so sorry for myself , hearing good new like this is really wonderful. I will continue to say prayers for all. You and Jerry give each other a big hug from me to both of you.
 
         wink                                   cool cool june cool cool

Post Edited (june17) : 8/13/2009 4:04:01 AM (GMT-6)


rainbeau
Regular Member


Date Joined Feb 2008
Total Posts : 39
   Posted 8/13/2009 5:56 AM (GMT -7)   
oh Joann, this is great news!!!  so pleased to hear about Jerry's new liver. 
 
love and light,
rainbeau

5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 8/13/2009 3:29 PM (GMT -7)   
Dear Joann

I'm so glad to hear your news. Take each day as it comes! Joan
Best friend is in ESLD, has HepC and cirrhosis. 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/13/2009 7:29 PM (GMT -7)   
THANK YOU, THANK YOU ALL
 
I have not had a spare minute to write.  Had a few horrible days.  He was released from the hospital this afternoon.  What a journey.  All that medicine.  I know I can do it thought I got him this far!!!  We have to stay in Nashville in a hotel for a month.  I found a good one with a kitchen.  Right in downtown Nashville.  I decided it needs to be pleasant since we have to stay so long.  It also helps that insurance pays for it. 
 
Jerry is doing good.  I think he is really thin.  His apatite isn't good so I'm hoping that gets better.  We are 20 minutes from Vanderbilt so I'm not worried.  Vanderbilt has a good program.  I'm very impressed with the way they handled things.  I will keep you all posted because now i will have more time living in a hotel for a month. 
 
Rainbeau I am so glad to hear from you.  I think about you a lot.  How are things going for you??  Please stay in touch. 
 
I wish I could share this time with John.  PG did you ever reach him?   
 
June-I can remember feeling sorry for myself.  Just remember there is always hope.  Jerry is living proof!!  I will keep you posted as he improves.
 
I Love you All
JoAnn

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/13/2009 8:17 PM (GMT -7)   

Hi JoAnn,  great to hear from you.........Glad Jerry is out of the hospital.  Now maybe you can catch your breath.   I know it has been a long hard struggle.  

And yes I did hear from John.  He called me a few days ago.  I posted a thread on it.  Message from JohnCT.   I am going to call him tomorrow morning since there's a 3 hour time difference. Hopefully he will answer.  

Take care........thought and prayers.......... 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.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/14/2009 9:29 PM (GMT -7)   
Oh PG I see that now.  I'm so happy you heard from John even though you didn't get to talk to him.  Thank you all for you love.  I'm knee deep in all kinds of meds, cleaning incision, drain tubes, insulin 4 times a day.  It is so over whelming at times but I know I will get used to it.  Have to be at the hospital early tomorrow for blood work.  Jerry is getting stronger.  Only problem now is he has no appatite which is really unusual for him.  He's getting really skinny!!!  We are so thankful.  I still have to pinch myself.  I will keep you all updated.
JoAnn

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 8/15/2009 6:24 AM (GMT -7)   

JoAnn,

 

WHAT A BLESSING!!!!  I AM ECSTATIC!!!!

 

Don’t worry about Jerry’s appetite.  Harvey had no appetite until about 8-10 weeks after his surgery.  I had to stand over him to make him eat.  Slowly but surely he regained his taste for food.  Now he is complaining that he needs to go on a diet.  The appetite kicks in later.  He is up to 175 lbs (that’s 50 lbs from when he was at his worst).  He joined a gym, but not just any gym. . .

Harvey asked me many times what his life expectancy was post transplant.  I told him that as long as he took his meds followed doctor’s orders; he could expect to live a full life.  He was hesitant and began to get depressed. 

 

During one of his walks, he met a man in the back of our subdivision that had a liver transplant 10 years ago.  They spoke for about 40 minutes and ever since then I’ve noticed a marked improvement in Harvey’s approach to LIFE.  This gentleman was a member of a particular gym and that was where Harvey was determined to go. 

 

I have supported Harvey every step of the way just as you have done for Jerry.  But Harvey is just like a kid, until he hears it from someone going through it, it isn’t real to him.  I suggest you seek out a survivor in your area that Jerry can relate to.  Perhaps the transplant clinic can help you with this.  If all else fails, join a support group.

 

I’m more concerned about you.  I have been extremely depressed since Harvey’s transplant.  Perhaps I went back to work too soon or maybe I’m experiencing post traumatic stress disorder.  I guess my point is that you must not expect too much too soon.  Trust me when I say that it will take at least 6 months before Jerry will feel like his old self. 

 

A failed liver can compromise so many other systems in the body.  Jerry may experience complications as you progress to recovery.  What I’m trying to say is that it is not over for you.  Don’t expect things to simply get “back to normal” since he has had a transplant.  It’s been 7 months since Harvey’s transplant and I’m just now feeling a more relaxed approach to his healthcare. 

 

Harvey spent 75 days in the hospital prior to his transplant.  This is beside all the appointments and hospitalizations we endured prior to the great event.  I was there everyday.  I have a very vivid memory of what happened but he has NONE.  He doesn’t appreciate what I went through but it’s not his fault; he simply cannot comprehend it.  

 

May God bless all those who care for someone with a terminal illness.  Only those who experience it will truly appreciate the commitment involved. 

 

Love ya,

 

Penny

 

 


HepCDaughter98
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/15/2009 9:52 AM (GMT -7)   
JoAnn that is just wonderful!!! I'm glad things are going well for you guys. I notice you said you were staying in a hotel in Nashville for a month. My father is currently from Nashville and in a hospital there. I just wish I knew what the best doctor and place was for him to go once he gets out of the hospital. If he needs to return to the hospital, my Mom and I are at a loss as to which one he should return to. If you don't mind me asking, how long was Jerry on the liver transplant list?

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/15/2009 3:58 PM (GMT -7)   
HepCDaughter  Yes we are in Nashville.  Jerry had his transplant at Vanderbilt.  There are several Liver specialists there.  If you can get your dad there I would highly recommend it.  They are so good.  They run a really tight ship and everything flows really well.  Your father will not get a transplant if he continues to drink.  Also if he quits he could posibbly live much longer.  Jerry's Dr in Knoxville wanted him to have a TIPS done two  years ago.  Like everyone else he was getting drained every week.  Once we got to Vanderbilt his Dr. here said no.  He managed to get the fluit off with meds.  This was after he spent a year in the hospital as much as he was out.  Everytime they drain you it depleates your body of protein and he would get so sick.  I have to say that Vanderbilt has about 130 people on their liver transplant list.  Most everyone on their list gets a liver.  Other hospitals can have as many as 2,000 on their list.  If you need any other info just e-mail me.  I will help with what ever I can.
 
JoAnn

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/15/2009 4:10 PM (GMT -7)   
Penny
 
I used to read all your posts over and over when Harvey got his transplant.  I was so thankful for the info.  Now here I am where you were then.  What a miracle!  I'm glad to know that others had eating problems also.  I thought it was just Jerry.  The Dr. just called to check on him and also told me its normal.  She said the smoothies I'm giving him are good. 
 
I found it interesting you talk about all you had gone through and how you feel now.  I was just talking to my daughter about that.  Its like when we go home will I know what to do.  This horrible disease has consumed our lives for 2 and 1/2 yrs.  I'm not sure I know what normal is.  We have a second on in South Carolina but have not had a chance to really enjoy.  I so look forward to walking the beach every day and just doing nothing if I wish.  Maybe even start reading again.  I finally made myself start Yoga a couple of months ago and it has been wonderful.  Also I have always wanted to take stain glass classes.  Now we will see if I can get motivated to do it all.
 
Thank you so much for all your info especially when Harvey was so sick.  I remember you singing on early before you went to work.  You are really something to take the time to help us all.  I can not immagine how you made it for over 70 days before he finally got his transplant.  I don't know If I would have had the strength to fight so hard like you did.  But I do remember thinking to myself I would do what ever it takes.  Aren't we just amazing!!! 
 
I was just thinking --about a week before we got the call Jerry could see it was getting to me, at least that week it was.  He told me he would do what ever it takes to make it up to me for all I've done.  I looked at him and said "You do not have enought money to make this up to me".  Then we both had a good laugh!!  Hang in there dear and thanks again for all your help.
 
JoAnn

La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 8/17/2009 1:59 PM (GMT -7)   
Just wanted to stop by and say, along with all our other friends, "Congrats to Jerry & God Bless him"

I've been in contact with Joann privately, so I knew that Jerry had received his miracle.

Hang on Joann... the ride isn't over yet. But you DO have the brass ring firmly in hand!!!!!

Love to all of you dear people ** smooch **
La Bunna

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


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 8/18/2009 7:06 PM (GMT -7)   
Joann!!!
 
I have not check in an a LONG time!!! I am SOOOOOO HAPPPY to hear your news!!! I will pray that his recovery continues to be good. you have really lifted my spirits just reading all this. I have not been on the forum in quite some time, but I think of everyone so often!!! PLEASE, PLEASE, PLEASE keep us posted on his progress!!
 
Mer

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/18/2009 7:30 PM (GMT -7)   
Quick update--For some crazy reason Jerry woke up Sat morning hungry and he hasn't stopped eating since!!  Its crazy.  He is getting stronger every day.  I am trying to do my yoga in the hotel room because it really helps me.  We went to Vanderbilt yesterday for blood work and everything is great.  He is getting stronger every day and I can really see it.  Still have to get a wheel chair to get through the hospital because it just too long a walk.  The drain tube is driving him crazy but hopefully when we see the sugeon on Thurs they will take it out.  There is still some drainage so I'm not sure what they will do.  He is sleeping better and ofcourse I crash.  We are thinking of getting out tomorrow even if for a short drive.  There is a lot to see in downtown Nashville.  I get up every morning with a giant smile on my face.  Thank you God for this miracle.
 
Mer your time is coming just keep going.  I know you can do it.  Your husband doesn't have terminal cancer he has liver disease and there can be a light at the end.  I know its hard but us caregivers just get stronger and keep going.  I remember sometimes at my weakest moments or some of my melt downs (trust me I had many) I always got stronger afterwards.  If you have to just loose it for a couple of hours.  You will feel better after.  One time a fell apart in the grocery store because I couldn't find what I was looking foor and I just lost it.  Started crying and sobbing.  I'm sure they thought I was crazy.  I really felt better afterwards!!!  AND I can truly say I told myself I didn't want to be any STRONGER.  And I ment it.  Something just keeps us going.  I'm not sure what but it happens.  You will be able to I just know.  Keep coming back to the forum.  It will help.  CHIN UP.
 
HEY JOHN  We need a fix!!!
 
Love JoAnn
 
 
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