Transplant Updates

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La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 8/31/2008 10:40 AM (GMT -7)   
Hi all
 
Joann had requested an update on hubbies progress... so here it is:
 
He is doing "OK".  Not great (like in the hospital) just OK. 
He hurts very very badly.  His right side is just throbbing pain.  Even the pain meds don't dull it.  He isn't sleeping and has no appetite.
 
So, after being the "WunderKid" at the hospital - here at home he is "Mr. Average".   The healing is going to take a long, long time.
 
All the professionals (surgeon, home nurse and home P/T) think he is doing very well.  They have no concerns about him and the surgeon has even REDUCED  the number of anti-rejection pills he takes each day.  Which is SUCH a positive!
 
But, now let's talk about attitude.  His is rotten.  He is crabby, crabby, crabby, and picky and whiney and impatient and the list goes on.  Why?  OK... number one is because he is in pain.  No doubt.  But, number two is because he thought he would come home and sit around a few days and then be 'back to normal'. 
 
And that is NOT happening.  This healing process is going to take months.  He was thinking a week or two.  (Hello?  A week or two?)
 
So, home life is tense.  I am - as we all discussed - carrying the entire household load.  And my (self owned and operated) business is back, demanding my time and effort.  And I am stretched to my limit. Physically and mentally and just plain old "time-wise"
 
We have had quite a few 'words'.  Sorry to say that, but I am giving you a true representation of what goes on after transplant... at least in THIS house.
 
After going thru all I've already gone thru for the past 6 years of this illness, (and those (2) horrible years of interfuron experiment treatments), I am CERTAINLY not going to "give up".   But, then again, I am also not going to "shut up".  Because I have something to say, too.
 
Hope you all don't think I am a witch.  He is a poor suffering and hurting guy.  And I know this.  But, sometimes enough is enough.  And sometimes childish behaviour needs to be addressed.
 
Ugh.  I , too, wish this healing period were only a 'week or two'!
 
I know that many of you out there can no longer drink.  Neither can hubbie, obviously.  But I have had a few this weekend.  Thank Goodness for red wine!
 
So, there you have it.... the latest news 'fit to print'!!!!!
'
La Bunna

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


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/31/2008 11:03 AM (GMT -7)   

LaBunna

Do not feel bad about having words with hubbie.  It happened to me last week. I am also one of those who can not shut up.  My poor hubbie just looks at me when I loose it and says--I am so sorry.  Then I feel really bad.  BUT, I think they get in the habbit of expecting too much and we just have to wip them in to shape!  I honestly don't think they realize they are taking advantage. 

..Do they tell you what the pain is caused from?  Is it from the incision/

..Did your hubbie have a hernia?

I purchased a bottle a couple of weeks ago of a new red wine I have wanted to try.  Thanks for reminding me.  I just might open that tonight and give myself a treat!  Few almonds, some cheese and maybe some good crisp grapes UMMMMMMM!  I just might have two glasses, one for me and one for you! tongue

smilewinkgrin  JoAnn

 

 


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 8/31/2008 11:59 AM (GMT -7)   

Joann,

 

Yes, they told us why and where the pain comes from.  It is on his right side only.

The surgeon explained to us that the liver actually connects to something on the right side of the body (I believe she said 'the diaphram'???) and it has to be cut off of this.  That right there is the cause of all his immediate pain.

The incision doesn't hurt him at all any more.... just this deep throbbing pain inside his body on the right.

She said "it's normal".  Good!

 

Yes, he has a hernia on his navel - from all the blowing up with acsites.  She was going to put a stitch in it when she did the transplant... but forgot.  Darn. 

NOw that is something else he will have to have done at some point.  Where are Jerry's hernias?  You said he has to 'hold one in'... what does that mean?

 

 

 
 
La Bunna

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


candlelight
Regular Member


Date Joined Aug 2008
Total Posts : 54
   Posted 8/31/2008 12:59 PM (GMT -7)   
La Bunna
Sorry to hear Jerry has so much pain. When I had my first transplant I
lived with my heating pad !!!!!!! It was the only way I could lay down. Also had to get hospital bed so I could put the back up a little.Insurance will cover that I had it for 3 weeks and set it up in the living room.Jerry is probobly testing you you took care of him for so long I think he just need to reassure himself.Oh I tried ice like they told me only made it worse.
HEATING PAD* HEATING PAD* HEATING PAD

Take care of yourself Joelene

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/31/2008 1:42 PM (GMT -7)   

La Bunna, thanks for your honest assessment of "at home Jerry."  When I had the entire right side of my liver removed, I'm sure they had to cut it away from anything it was attached to.  They took the gall bladder at the same time, as it is right underneath the rt. lobe of the liver.  Yeah, there was a lot of pain and it lasted for months.  However, it really wasn't as bad nor did it last as long as hip replacement from osteonecrosis.  I still have hip pain, though not as much as I had prior to the last revision.  When I got whiny after the liver surgery, I had to remind myself that I shouldn't even be here, and to just be grateful that I am.  You might tell Jerry that a little gratitude can go a long way.  What's some temporary pain compared to being 6 feet under forever?

If he has a coughing fit, have him hold a firm pillow or folded towel against his belly.  Is he wearing an abdominal binder?  I wasn't able to wear mine immediately, as the incision site hurt too much on the outside.  However, when it started to heal, I did wear it.  After they've cut through muscle and Lord knows what else, the tone is just not there.

I agree that Jerry has probably gotten a little spoiled.  It is good for him to do a little bit extra every day.  It will help him recover faster.  It's been over a year since my liver surgery, and I am just now getting my strength back.  However, since I live alone, I've had to do things I otherwise would not have, such as grocery shopping, laundry, etc.  For the first 6 wks. or so, I wasn't able to do that, either, and had to have someone do it for me.  It IS very frustrating not to be able to do things one has done easily in the past.  Of course, in Jerry's case, he was sick for so long.

Enjoy a glass of wine for me, those that can.  smilewinkgrin

Hugs,

Connie


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/31/2008 2:56 PM (GMT -7)   

LaBunna

Eveyone is calling your husband Jerry.  Thats OK I will share the name with you. 

The way I understand a hernia is a bulge in the stomach lining.  When you push on it you can feel the hole and sometimes I can feel when something is sticking through that hole.  I think it is his Innerds (without a better term).  One time it got stuck and he was really in a lot of pain.  I took him to the ER (with help from his son that time).  It was horrible they tried everything to get it pushed back in but it would not budge because he couldn't relax.  They made me and his son leave the room in the ER which really scared us.  They decided to put an IV in to give him morphine to help the pain so they could get it back in.  Well, they couldn't find a vein.  You know how that works.  He had so much scar tissue from IV's.  It was a nightmare!  By the time they let us in the room he had gauze on both sides of his neck where they had tried to get in the juglar vein.  No go, but a good nurse finally got one in his arm.  As soon as they got the morphine in him he relaxed and it popped back in!!  That was just one of my many experiences in the ER.  He still talks about how the Dr. STABBED him in both sides of the neck!  YUK Our poor hubbies have been through so much.  As I'm sure eveyong on this forum has.  Now the hole is larger and when his insides pop through he or I just push them back in.  It used to really gross me out but now I'm used to it.  Kind of like everything did at first but after a while you just go with the flow.  I truly beleive no one could possibly understand what this disease is  like unless you live it like we have and still are.  I wish some one had the "Know How" to create MORE public awareness for this disease.  My daughter has told me many times I should be walking around with a video camera because people don't really have a clue.  If I had my husband on video they could see the changes in him.  I just don't have enough energy left.  Some day some one will I hope.  It would make for a good documentary for AA if anything.  If anyone could do it John would be my pick.  With some help from Connie.  Even you LaBunna you are very good with words.  Also Joelene.  She really has a story to tell.  Her journey started with a tubal pregnancy!!!  Now that is a story.  I'm off to cook more.

  Our three day week end is like any other day is for us.  Vanderbilt told me to take Jerry to the coast while his MELD is so low.  But unfortunately the economy has affected our business and he must stay to make some much needed very important changes.  He can't walk well, talk loud enough for anyone to hear, has to eat often (small amounts) but he has to keep the business going if anything for insurance!  That is LIFE.

JoAnn 


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 8/31/2008 3:38 PM (GMT -7)   
La Bunna, VENT,VENT,VENT eyes . You have every right too! God bless,
 
 
Judith

La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 8/31/2008 3:44 PM (GMT -7)   
Joelene

I just FLEW to the drugstore after I read your post.
GOT THE HEATING PAD. And he is using it right now.

Thank u. Thank u. Thank u !

I would have been afraid to try one , if I hadn't heard from you.

Thank you!

I'll let u know how it works for him, but I am extremely hopeful!!!!!

Big smooch goes out to you!
La Bunna

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


candlelight
Regular Member


Date Joined Aug 2008
Total Posts : 54
   Posted 8/31/2008 5:29 PM (GMT -7)   
LaBunna
I am so glad u got the heating pad I had to start using it again after my last rejection when the pain got bad again praying it works for him
Joelene
LET ME KNOW

candlelight
Regular Member


Date Joined Aug 2008
Total Posts : 54
   Posted 8/31/2008 5:36 PM (GMT -7)   
PS LABunna
What is your husbands name
Joelene

candlelight
Regular Member


Date Joined Aug 2008
Total Posts : 54
   Posted 8/31/2008 5:51 PM (GMT -7)   
Connie
I did not realize until tonight u had a transplant. Are you back on the list? How long did this transplant last
Joelene

okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 8/31/2008 8:03 PM (GMT -7)   

LaBunna

Men are such babies.  My Jerry had a light stroke directly after his transplant.  He would cuss me so bad, something he had never done before, I thought I would go crazy.  But finally that ended. He had so much anger in him, because he thought he would be ok within a week or two.  He was in the hospital for 37 days and came home with a walker.  He had pain but it did get better before to long. My advice is to remember it's not all him that's saying what he says, it's all the medicine and pain.  At least that's what everyone told me.  Take care of yourself and if I was a drinking person I'd join you in that glass of wine, crap I may start drinking if Jerry doesn't get better soon.

Helen


bratnewton
Regular Member


Date Joined Aug 2008
Total Posts : 131
   Posted 8/31/2008 8:30 PM (GMT -7)   
I was told that if your hernia is sticking out and you can't push it back..go to ER. I have 5 hernias due to ascites

Karen in Nevada shocked

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/31/2008 8:43 PM (GMT -7)   

Karen

That is exactly what we were told.  I asked the Dr. in the ER to give me an idea on how much time we have to get it back in before we leave for the ER.  I do panic easy these days.  The Dr. told me to try for an hour or two and then go.  One of the nurses we had in the ER told us to put a heating pad on the hernia if it gets really hard to get back in.  We did that for several months and it really helped.  When we told our GI Dr. what we were doing he said not to do that.  The heat will make it expand and it might make things worse.  So needless to say we don't do that any more!!  Do you have trouble with yours getting stuck.  Also Jerry was told that is the reason he has the hernia's is because of acites.  Actually if you haven't read the old posts his hernia was his biggest complaint to his primary care physician for a year and a half before he was diagnosed.  His physician kept tell him to "Put up With It" because its major surgery.  So he wasn't diagnosed until he was very sick!  Another "Water under the bridge story"  Have a good evening.

JoAnn


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 8/31/2008 9:05 PM (GMT -7)   
LaBunna,

I am a new member....and want to tell you, honey, you have every right to vent!!! My hubby has not had his transplant (yet), but I, too am dealing with carrying the load in my household (working full time, taking care of him and raising a child)......and on top of that dealing with the attitude he gets. I figure if we have one day in a week that he's not being a butt-head, then we are having a good week!! You hang in there...you have gotten this far!!! And, thanks for the heads up for what life will probably be like after transplant......oh, boy!!! GOD BLESS YOU!!!!!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/31/2008 9:07 PM (GMT -7)   

Joelene, I did NOT have a transplant, nor was I ever eligible for one.  What I did have was a huge cancerous tumor in my liver (as a result of hep C) that had metastasized to the inferior vena cava.  Therefore, it was considered inoperable and not eligible for a transplant.  However, at Mayo I underwent chemoembolization and also TheraSphere, as part of a study.  Those treatments shrunk the tumor, including the piece that had metastasized, and basically killed the entire right lobe.  So they removed that rt. lobe entirely.  I am living with just the left lobe of my liver.  I was told, however, that if the cancer should return on that side, I would need a transplant.  Also, I assume, if I went into liver failure due to cirrhosis.  As of May of '07, the cirrhosis was deemed "mild."

I did have 2 incisional hernias in my midriff, following the liver surgery.  A hernia (regardless of location) is considered "reducible" if it can easily be pushed in and stays there, and "unreducible" if it can't be.  Mine would only stay in somewhat with an abdominal binder or a waist cincher, so I had surgery, which didn't hold the first time, and so surgery again this past May.  Then I had problems with acites and drains clogging.  I am FINALLY beginning to feel better.  I have blood work and a CT scan scheduled for the 8th and a meeting with my hepatologist on the 9th.  I will know more then.

Hugs,

Connie


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 9/1/2008 6:53 AM (GMT -7)   
Joelene - "hubbie" is my husband's name.  He FORBID me to use our real names on the internet.  I'll respect his wishes.
 
To all the rest of you good souls.... nice to hear that my hubbie is not the only buttheaded guy out there!  Thanks for clueing me in that this is kind of a universal thing.  As always, we seem to think that 'we are the only ones going thru this'. 
 
WRONG, it seems!!!!
 
I've decided (this morning after he screamed at me, because I wondered if the cream for my coffee was spoiled.  Jeez) that I am going to make this a positive thing for our marriage.
 
I was always the 'keep quiet and stew silently and give him the cold shoulder" type.  So,of course, how could he ever know what was wrong?  I didn't say anything.
 
Well friends, I am saying it now.  I am giving it right back to him.  I've gone thru soooooooooo much with this illness that something inside of me has changed.  When he says something mean or plain dumb.... I am calling him on it.
 
In fact, yesterday I told him, "You've got a lot of nerve treating me this way.  I AM YOUR BEST FRIEND."   That made him step back.
 
(But, no, he does not apologize.) 
 
I do know that pain and drugs are really goofing up his head and his attitude.  I won't forget that. 
 
But, you all get what I said here. 
 
And I love you all for giving me - once again and still - your SUPPORT!
 
 
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 9/1/2008 7:46 AM (GMT -7)   
Hi La Bunna, I am glad to hear that your husband is doing well, but am sorry that the pain is so bad. I hope the heat pad helps. My husband has been very crabby lately. He has trouble with his legs and also the fact that he can't do the things he used to is really starting to weigh on him. I know it is nothing compared to what your husband is going through.

I continue to pray for both of you.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/1/2008 9:03 AM (GMT -7)   
Hello La Bunna. Let's see if I can get this one posted. I tried yesterday and my stupid computer froze when I hit submit. And now a day later I have forgotten what it was that I typed.

There were many days that I just cried with hurt that my husband would say some of the things that he said. I couldn't believe he could be so hurtful when all I was doing was trying my best to help him. Then I found this site and learned that it WAS the disease and not really him. It helped knowing that, but there were still plenty of tears and words exchanged after that.

I was pretty good about holding my tongue because I can get brutally honest and hurtful myself. So most of the time I would say nothing and go take a walk to cool off. My mantra back then was ..........this too will pass. It helped me somehow make it through a difficult journey that hopefully I will never travel again. I firmly believe that there is a reason for everything and when I don't understand.. I know that God's in charge not me.

Hang in there.....and try not to feel guilty about your feelings or reactions to your husband's words or actions. I am here to tell you that they are all normal and everyone that is in your shoes have them and has to deal with them in their own way.

Have a great day .........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.


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 9/1/2008 10:43 AM (GMT -7)   
Guess I'm kind of lucky, so far my husband hasn't said anything hurtful too me turn , I think even in his "state" he sense's that it would put me over the edge! Hopefully this won't change when and if he gets his transplant as I'm beyond tired and into weary!  It helps to be able to share these emotions, thank you LaBunna for being so honest.
 
 
Judith

La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 9/1/2008 11:14 AM (GMT -7)   
Wanted you all to know that YES!!! The heating pad helps him with pain!!!
 
Joelene - Thank You soooooo much!
 
He's been able to get some sleep with the help of the warmth. 
 
Yea!!!!
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 9/1/2008 1:25 PM (GMT -7)   

La Bunna, so glad to hear that the heating pad is helping with hubbie's pain.  Maybe it will improve his attitude, too, if he can get some sleep.   smilewinkgrin   I know I become short-tempered if I haven't slept well or enough.  However, I have to say "bravo" on calling him on some of his nastiness.  I think you have to let a certain amount go on past, especially if it's obvious he is out in the ozone somewhere, but I think it's a positive thing for you to respond at times.  :-)

Hugs,

Connie


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/1/2008 8:05 PM (GMT -7)   
La Bunna, I am so happy that the heating pad is helping. I hope you both will be able to get some rest. I will keep praying.
Butterflythree
 
There is always hope!


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/2/2008 3:48 AM (GMT -7)   
La Bunna

I am so glad that your hubbie is progressing, although I do understand the "want it better right now" attitude. Hopefully with some rest some of the pain and "nastiness" will subiside. Glad that you have been able to say some of the things on your mind. As patience I know we get self absorbed and do not see how this affects others.

Keep us posted we all do care.

Lucy

candlelight
Regular Member


Date Joined Aug 2008
Total Posts : 54
   Posted 9/2/2008 3:42 PM (GMT -7)   
La Bunna
yeah!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Heating pads are wonderful !!!!!!!!!! I hope u didn't think I was being nosey but in one of Joann's posts she said alot of people were using her Jerry's name for your hubbie I just did'nt want to call him the wrong name. You should vent anytime you want, basically you went thru more than he did and still are. hope this makes sence having a bad day cant remember nothing this post took me 1/2 hour
   Hugs & Hope
      Joelene

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