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La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 10/31/2008 1:48 PM (GMT -7)   
HI to all you dear folks!
 
I am just taking a moment to let you all know that hubby is STILL doing just great after his liver transplant on Aug. 12.
 
He is driving, eating and sleeping!  He is still kind weak - but really? - not that weak.  He is carrying groceries and helping bring up laundry and many other things that he couldn't do for weeks.
 
He looks like his old self, too.  Except skinny.  But, he's cute!  He has the old 'life light' in his face and eyes and he has normal color again.  Funny thing, his hair had not grown in something like 4 months when he was at the end of his ESLD.  But now!  He has MORE hair than he ever had and it is growing like wild!  I look at him and laugh!  You can practically SEE it grow!
 
So, we are good.  He is one of God's miracles. 
 
What an unbelievable and horrible time we had with that darned disease.  As you all probably know, I had a nervous breakdown over it.  I have very limited memory of the last few weeks, except for remembering crying all the time.  I even cried in my client's offices.  I had the feeling of having drowned, and being dead and still underwater, while looking up at everyone else that was alive.
**********shiver *******
 
But, we are BOTH back.  I've got my mind back and he has his body AND his mind back.
 
So, there you have it! My not so exciting news update.  But, who needs that old kind of excitement?  NOT ME!
 
Love to all of you and I still pray every day for all of YOUR prayers to be answered.
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 10/31/2008 2:52 PM (GMT -7)   

LaBunna, I think that is a VERY exciting update!!  How wonderful for us to hear how well you both are doing.  Your husband really is a miracle.  I'm so happy to know that he is helping you out some and that you are not having to do it all.  Anyone would have a breakdown over the load that you were carrying.

God bless you and keep you both, and please continue to let us know how you are doing!

Big hugs,
Connie


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

Post Edited (hep93) : 10/31/2008 5:59:55 PM (GMT-6)


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 10/31/2008 3:30 PM (GMT -7)   

La Bunna, thank you for the update and how wonderful for you both yeah yeah .  I did not know that you had a breakdown but am glad you got through it, sometimes I feel like I am going to have one too!!!  Your right, he is one of God's miracles and I pray that my husband will be too.  Take care and keep us posted ok,

 

 

Judith


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/31/2008 7:14 PM (GMT -7)   
LaBunna, Thanks for sharing that wonder news with us. That gives me so much hope for the future. Right now I miss my husband so much I can hardly stand it. It is good to know that I have a chance of having him back someday. It is just so sad that they have to get so much worse before they can get better. I am so happy for you. I know how rough you both have had it lately and am glad that you are back on the road to normal.

Take Care! You are still in my prayers.
Butterflythree
 
There is always hope!


okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 10/31/2008 8:02 PM (GMT -7)   

LaBunna

I am sooo glad to hear from you.  I know exactly what you mean about having a breakdown.  While Jerry was on life support for that week before transplant, I never cried so much or prayed so much.  I still cry and pray  like crazy. I am soo happy about your good news, I had been worried since we hadn't heard from you.  Take care and keep up the good news. turn yeah turn

Helen


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/31/2008 8:45 PM (GMT -7)   
Helen, Just wanted you to know that you and Jerry are always in my thoughts, and I am still praying for you both.
Butterflythree
 
There is always hope!


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 10/31/2008 9:23 PM (GMT -7)   

LaBunna

You give me such hope.  By this time of night I'm usually down because I'm tired.  We have had a good month.  In fact it has been the best in over a year.  I knew it wouldn't last but I just did not want to think about that.  I ache to be in the place where you are now.  I know it will come but the waiting is sooo hard!  I think I read your post at least three times.  It seems my short term memory is gone.  I think its just wore out from trying to remember all the info about this horrible disease!  I know its a lot to ask but please keep those wonderful posts coming.  It makes me feel so good.  Jerry is already due for another blood tranfusion.  Its only been 4 weeks since the last and prior to that he had to get two in one week.  He has this huge lump in his side that I suspect is his speen.  And to top it all off his new MELD is 10! Go figure.  That stupid MELD score is enough to give anyone a break down.  The Dr.'s act very puzzled.  Or maybe I'm just reading too much in to it.  I just thank God every day I still have him and pray to have an ending like yours. 

Thank you for HOPE

JoAnn


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/1/2008 12:54 AM (GMT -7)   
What wonderful news LaBunna, I am so happy for you. Anyone who deals with this disease goes through the wringer with it. I came mighty close to that break down myself. But by the grace of God and HealingWell
I was able to get through it. I squeeked by and give thanks everyday.

And it is good to hear success stories.......They make our day. :-)

You both are such inspirations to us.........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.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 11/1/2008 5:05 AM (GMT -7)   
LaBunna

I am so thankful that you posted your update. It certainly gives me hope that life could be almost normal again. I know that the road was rocky and rough for you but you both have the most wonderful gift. Please keep us in your prayers as I will keep you both in mine.

Lucy

La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 11/1/2008 5:20 AM (GMT -7)   
Just a piece of advice that I had heard from a wife whose husband was transplanted in 1998. I used it often and I am convinced that it helped.

ALWAYS hammer the doctors with your spouse's symptoms. I even went so far as to exaggerate sometimes. NEVER let the doctor think that your spouse is 'doing OK' or 'hanging in there'. Report every symptom LOUD and OFTEN. Be a pest. Be a huge pest.
Physical symptoms and mental symptoms.

After hubby's transplant I heard someone say (I was in a daze at the time) that hubby was placed high on The List not so much because of his MELD score, but because of his advanced Encephalpathy and Acites.

Keep this advice in mind, folks.

Lots of love,
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 11/1/2008 8:03 AM (GMT -7)   

LaBunna

WOW what good advise.  Something happened just yesterday to let me know exactly what you are talking about.  I dont' want to post it.  Thank you so much for this advise

JoAnn


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 11/1/2008 9:30 AM (GMT -7)   
Thanks for the really good advise LaBunna!!



Judith

La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 11/1/2008 1:54 PM (GMT -7)   
Even if you have to say 'he is sleeping all the time'.... falling asleep in the car on the way to the dr. office.... complain about symptoms!!!
I told them all the awful truths of his encephalopay... even though I hated repeating that crazy crazy stuff.

Keep convincing the docs that THIS IS NOT NOT NOT "OK".

"This disease is killing him" is how you should start and end every doctor visit, with all the other 'hammers' in between.

Take charge and COMPLAIN!!!!!!!!!

Love you all.
JoAnn. I miss you. We had so much in common. I pray that soon, we will have so much in common again!
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 11/1/2008 2:11 PM (GMT -7)   

LaBunna

I'm not surprised you had a break down.  You went through the entire nightmare BY YOURSELF!  Those dogs aren't too good at helping except with love which does help some.

 I have had lots of mini melt downs.  Those Docs haven't seen anything yet!  Not until I have had a TOTAL MELTDOWN.  As far as the sleeping.  Jerry falls a sleep in between bites of food. He has been doing that for a year! Especially when his blood is low.  Also the itching is back with a vengeance so I'm sleep deprived again.  We had two weeks of NO itching.  That was heaven for me because it drives me just as crazy as it does him (probably not quit as bad).  Its so awful I start itching!!!  I'm also noticing a big change in his mental status.  Something I've noticed that is strange is counting.  He has an engineer brain and he is having problems counting things.  I'm also seeing a lot of signs of comfusion! 

I miss my BFF's they are all in Seattle.  I have one here.  Her husband had a brain anursym two years ago so she is really a mess.  My daughter tries to help but has an 8 yr old and 3 yr old twins!  My oldest daughter moved back to Seattle.  She was my rock and I miss her terribly!  Fortunately I have awsome neighbors.  They offer contantly to go to the drug store etc.  That is a big help. 

I know your husband is dead set on letting anyone know where you are but if you can figure out a way to call me without your number showing up.  Please do!!!!  Thanks again for all your support.

JoAnn

 

 


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 11/1/2008 2:26 PM (GMT -7)   
Joann I will email you again and then you can email me.
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 11/1/2008 9:40 PM (GMT -7)   

LaBunna-

First of all, I am so glad to hear you are on "the other side" of this transplant issue. It is very encouraging to read as we are pre-transplant at the moment. My hubby has HepC and cirrhosis, and his MELD is only an 8 (I sometimes despise having to live by MELD scores!!)

Second, THANK YOU< THANK YOU for the advise about hammering. My hubby is not doing so well....but every time they check blood, etc they say well his blood work looks fine.....he has had alot of trouble breathing lately, and we have had a few trips to the ER as a result of it. They have done abdominal CT scans, chest CT, etc and NOTHING is showing up....not even any ascites!! They are now trying to say he has "some anxiety" and probably is having panic attacks. It is making me feel like we are crazy or something. I call our coordinator about everything, and now he has lost his voice....for two weeks now. His pain is excrutiating, ammonia level elevated, and the shortness of breath thing.....how much longerr does someone have to live like this??? Sorry, guess I needed to vent there! I have my mini meltdowns, too......All of that said, you have reminded me that I need to just keep telling them EVRYTHING no matter how "minor" it may be!!!

 

Thank you!

 

Mary (Mer)

 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 11/1/2008 10:02 PM (GMT -7)   

Hi Mer

My husband had several episodes of breathing problems last year.  What he had was fluid in the lining of his lungs.  That is the only way I know how to explain it.  I know how you feel because it was horrible.  My husband's MELD was 17 and 18 all last year and now its a 10.  He needs blood transfusions regularly and is very weak.  I personally think its because he has been so sick for so long.  He's just plain wore out!  His metal status is now going down hill.  I just wanted you to know I totally know what you are going through and NO ONE could possibly understand unless you live it.   Just keep the faith and hang in there.

JoAnn


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 11/2/2008 6:32 AM (GMT -7)   
Mer,
I agree with JoAnn. Sounds like fluid in the lining of his lungs.
My hubby had that same problem 2 or 3 times. The removal of the lung fluid is horrible. This was all a part of the acites.

There is also a different problem it could be, tho.

The esaphagus (sp?) can get 'varicous veins' on it... due to the liver disease. Hubby never had this problem, but I remember him being checked for it over and over and over.

If the problem is not fluid , it might very well be this. I think they call it 'varices'. Once again (sp?)

Whatever it is... make it a HUGE problem and hammer those doctors with it. Back to my original point. "This disease is killing him"!!!!!!!!
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 11/2/2008 7:19 PM (GMT -7)   
Thank you, all!! I had in the back of my mind the thought of the varices......and also wondered if there was fluidin the lining of the lung...wee will find out the result of the chest CT hopefully tomorrow. They also did an ABG (arterial blood gas) to check and see how much oxygen he truly is getting. But, with the loss of voice for about two weeks now, I wondered about the varices.....

Thank you for letting me vent. It is HUGE that all of you are here and know exactly what this horrible disease is like!!

Talk to you soon

Mer (mary)

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 11/2/2008 9:35 PM (GMT -7)   

Hi Mer

I thought of something else.  My husband can barely talk at times.  Some of it is weakness and some he is so dry from the meds its almost impossible to hear him.  His voice sounds really scratchy.  They have done a lot of the blood gas checks on my husband also.  As far as the fluid around his lungs we always knew what it was.  He couldn't take deep breaths.  So he was really short winded and usually he had a lot of fluid in his belly at the time.  So we knew that it pushed up around his lung.  Jerry has never had verices but one time he vomited so much he tore this esophogus (sp).  Nice uh! I'm sure he last year so much he hit every room in our house and all our vehicles and our driveway and I'm sure I have forgot some.  I think verices  is the only thing he hasn't had.  Even though he has to have blood tranfusions.  I asked my husband if it hurt when he had the fluid around his lungs and he said NO.  Also it didn't hurt to have it drained.  I was in the room when they did it.  After a while all these procedures make us tougher!  I think!  So try not to worry they will figure it out.  I know easier said then done!  Just hang in there.  If it gets too tough just have a mini melt down, that always seemed to help me get through another curve ball.  Also I have found talking to people helps and of course this forum has been my savior. 

JoAnn


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 11/3/2008 8:21 PM (GMT -7)   
Thank you all for the good advice and input. My hubby went to his primary care doc today, and I wrote a note to the doctor (my sister in law had to take him because of my work schedule) and they came up with a game plan!! They are doing a CT scan of his throat on Wednesday and also referring us over to an ENT to do a scope down his throat (through the nose) to check everything out really good. Finally feel like we are taking a step forward!

Yes, this forum has been a life saver for me!!

Talk to you soon

Mary

bratnewton
Regular Member


Date Joined Aug 2008
Total Posts : 131
   Posted 11/3/2008 8:59 PM (GMT -7)   
LaBunna

Wow I just realized that its been almost 2 weeks since I read posts. Congrats about your hubby. What a blessing to have him back and more of a blessing to have you and your sanity back. You can take that big breath that you have been waiting to take

Good advice about talking to the Dr. I went in to see Hep Dr the other day. Had my notebook of all blood test results, all test results from past 6months. Had a few questions as to if they were going to start TX yet to which he replied "we'll discuss after I lose 35-40 pounds. Then asked about being put on TP list since I had done the 1 year alcohol free and the 3 months (actually 4) no smoking and I had paperwork for raising money to compensate any and all things insurance (medicaid) won't pay. He replied with the same answer. Said my bloodwork was good, lowered my spirolactoneto 200mg a day and said see you in 6 months. I tried to explain to him abou the muscle aches, the brain fog days, shortness of breath but he wasn't concerned about anything except me losing weight. I told him I was gaining 5 lbs every 1 1/2 to 2 weeks. Told me to watch my diet. My sodium levels were good and poof he's gone. My husband just drives me to the visits and disapeers til I am done so he is absolutely no help
Anyways so glad to hear your GREAT news

Karen

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/3/2008 9:17 PM (GMT -7)   
I just wanted to remind everyone that there is a medical word list of spellings on the board, that I started.  I'm trying to add new ones as I see problems in posts.  Feel free to check it out and to suggest new words.  I will add them to the list as we go along.



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

Post Edited (hep93) : 11/3/2008 9:20:49 PM (GMT-7)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/21/2013 9:01 AM (GMT -7)   
Gman's mom, you posted in a thread that has not been active for 5 yrs. Always look at the dates if you add on to another person's thread or post.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
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