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parisdr
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 5/15/2009 12:43 PM (GMT -7)   
I am sitting in the waiting room at the heart cath lab waiting for my husband to have a heart cath.  We are working on getting him on the transplant list.  They are fast tracking getting him on the list because he is so sick and this is his only hope.  He checked in the hospital last week overnight and had alot of tests made, and something showed up on the heart test, so today they are checking that.  I think if everything is ok with his heart, he will get on the list.  Everything else looked ok, and the doctors are working hard to get him on that list.  They told us that his blood type, A positive, was in his favor because alot of people on the waiting list are B type and there arent that many with A positive waiting for a transplant.  I hope so.  We are both very tired.  Taking care of him is a full time job and I stay tired all the time.  The doctor at the VA told me to call Hospice, but I am just not ready for that.  If he doesn't get on the list, and there is not hope, I guess I will have to have help taking care of him......but that is later.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/15/2009 1:16 PM (GMT -7)   

Hi, Parisdr!  I hope the heart cath goes well and that your husband will be able to get on the list soon.

Keep us updated!


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


5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 5/15/2009 8:08 PM (GMT -7)   
Hi Parisdr

Mary just got listed Mar 27. We've done our share of waiting. Mary was also told to call hospice and that was 2 years ago. You sound calm and collected and that will serve you well in dealing with what's ahead. You'll get a lot of support and learn from posts about how to deal with liver disease on this forum.

Joan
Best friend is in ESLD, has HepC and cirrhosis. 


parisdr
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 5/18/2009 7:27 AM (GMT -7)   
The heart cath went good and the cardiologist is okaying him for the transplant. Now waiting for the transplant team to meet again and see if he will go on the list. He is going to the VA tomorrow to have the fluid removed again from his stomach. He is just so tired of it all, but if he gets on the list it will boost his spirits.

His sister has stage 4 breast cancer and he wants to see her really bad. She has gotten the ok from her oncologist to fly here on the 27th to see him. That will make him feel much better.

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 5/19/2009 1:49 AM (GMT -7)   

 

Parisdr,

 

I’m glad everything went well with the heart cath.  I’ll pray that your husband gets listed soon.  This should not only lift his spirits, but yours as well!  It’s a very long road with many hurdles.  Take it one day at a time.  Do what you can to keep it positive.  A positive attitude really makes a difference in such a depressing situation. 

 

Keep hope alive.  Good luck and may God bless you both.

 

Penny


parisdr
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 5/19/2009 6:54 PM (GMT -7)   
Got a call from the transplant center today and they are going to put him on the list as soon as our insurance company sends them a letter of ok.  I don't think there will be a problem with the insurance.  We have federal blue cross and it is really good coverage and the Univ of KY hospital is in the network.
 
Can anyone tell me more about the surgery and recovery and about the medicine he will have to take forever.
 
Thank you for all your support, it really helps to have it.

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 5/19/2009 7:35 PM (GMT -7)   

 

Parisdr,

 

Wonderful news!  I’m so glad the University of Kentucky is going to list your husband.  Be patient but vigilant.  You may be able to see the light at the end of the tunnel, but don’t blink.  Remain on point and defend your rights. 

 

Don’t give the doctors the opportunity to take their eye off the ball.  I recommend you bring as many family members as you possibly can to each doctors visit.  A transplant patient with a strong support system is HUGE in the eyes of the transplant team.  Get them to work for you!  Let them know how important your husband is to you and your family.  Force them walk in your shoes and make them feel your pain.  Build a relationship with them that motivates them to want to help you. 

 

As for the surgery, it will take between 6-12 hours depending on your husband’s condition and any complications that may come up.  He will receive blood transfusions during the surgery and probably during the week after.  He will be sedated and placed on a respirator (breathing tube).  An ‘L’ shaped incision will be made from his sternum down to just above the belly-button and around to his right love-handle.  His sick liver will be removed as well as his gall bladder. The new liver will be placed and monitored for function.  Two to three drainage tubes will be installed in the lower abdomen to accommodate fluid drainage.  The incision will be closed and he will spend 2-3 days in critical care until his breathing tube is removed and he can be moved to progressive care.

 

It typically takes 3 months for a patient to return to normal activity.  Much depends on how sick the patient is at the time of transplant.  As far as medication, it starts off very heavy then tapers off as the months pass.  I can honestly say that my husband is taking less pills now than he was before the transplant.  It has been 4 months.  If you want read a blow by blow of what my husband endured and obtain a list of the meds my husband was prescribed after transplant, visit “We Have a Liver”. 

 

You have many sleepless nights ahead but I am confident that you and your husband will get through this ordeal.  Keep the faith and never loose hope.

 

You are in my prayers. 

 

Penny


parisdr
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 5/20/2009 5:16 PM (GMT -7)   
Thank you Penny for the good words.  He is feeling pretty rough today, they drained 11 liters from his stomach yesterday and that along with the heart cath on Friday has really drained him. 
 
The transplant team at UK are wonderful.  They are so encouraging that he will get a liver soon, and I hope they are right.  I know it will be rough but at least there will be a light at the end of the tunnel.  I don't know what his MELD score is, but I know it is bad.  The hospital has really fast tracked getting him listed.  Hopefully our insurance will ok it this week and next week he will be listed, and hopefully will get a liver soon.  Mel has always been an avid golfer, bowled on a league, and even played softball, so he was a very active person and even though he is so sick now, I think his past activity will help him through the surgery and recovery.   Except for his liver and a gunshot wound he got in Vietnam, he has basically been pretty healthy.
 
Again, thanks for all the encourgement, it really helps.  This is a very hard disease to deal with for both the patient and the caregiver.

parisdr
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 6/6/2009 8:17 AM (GMT -7)   
Have great news.  My husband got a liver!!!!  He was on the transplant list only 6 days when we got the call.  This is one time that being on death's door really paid off. 
 
 he was in the OR 8 hours on Tuesday and is still in SICU.  T he doctors say he is doing good, but he was in such bad condition that it will take a little longer to recoop than they expected.  They hope to take him off the ventlator today and take 2 of the stomach drains out today.    He looks better each day and yesterday started being really alert.
 
God does work wonders!!!

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/6/2009 11:47 AM (GMT -7)   
yeah yeah yeah

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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/6/2009 1:02 PM (GMT -7)   

parisdr, I am SO happy for your hubby and yourself.  That is amazing that he was on the list such a short time.  He has my prayers for a good recovery.

Hugs,

Connie


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


parisdr
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 6/8/2009 10:27 AM (GMT -7)   
Thank you all for your thoughts and prayers.  He is doing good, he is still in ICU but should go to a room today (and hopefully the chairs will be more comfortable than the ones in this waiting room) and home at the end of the week.  His recovery will be a little slow because he was so sick, but it will all be worth it.
 
God does work wonders!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/8/2009 10:34 AM (GMT -7)   

That's good news!  May he continue to have a smooth recovery.

Hugs,

Connie


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


parisdr
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 6/24/2009 5:13 PM (GMT -7)   
We are still in the hospital.  It has now been 22 days  since Mel's liver transplant and it has been rough.  He was in ICU for 6 days and is now on the transplant floor.  It has been one thing after another.  During the surgery they had to give him 30 units of blood and have given him 6 units since the surgery.  Last week he had diarreha (misspelled) for 5 days which was worse than the lactuose days.  They changed his meds and gave him imodium to stop that, but last night it seemed it might be coming back. 
 
He is so weak and stays confused.  I am so scared that something happened to him during surgery and he may never be right.  They did a cat scan and MRI of his brain and said everything looked ok, but I wonder if they are right.  He lays and looks out the window and talks about things that aren't there.  He doesn't eat much and has absolutely no energy and no muscles.  They have started him on an anti-depressent, but it will take 2-3 weeks before it kicks in and maybe help. 
 
Physical therapy came today and got him up, but it took 2 of them to get him to walk.  I am so worried and so very tired.  I slept in a chair the 6 days he was in ICU and have slept in a recliner since he has been on this floor.  I feel like I have aged 10 years, and look like it too.  The doctors talk about sending him to a rehab facility, but it can't happen until he gets stronger.  Nothing is ever said about when we may leave this hospital, it seems like we never will.  Everything they talk about sending him to rehab somethings happens and it gets put back.
 
I guess I am just having a meltdown.  I am tired and extremely depressed with the entire situation. 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/24/2009 6:23 PM (GMT -7)   

parisdr, I am so very sorry that your husband is having a rough recovery.  It's not unusual for things to go awry after surgery.  It IS a high-risk surgery.  Some take longer than others to recover.  I know that 22 days seems like forever right about now, but it's really not that long.  My recommendation to you is to go to a hotel and get a good night's sleep.  He's in good hands, but you need to take care of yourself.  There is still a rough road ahead and you must take care of yourself in order to handle it.

Please keep us posted.

Hugs,

Connie


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


parisdr
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 6/25/2009 5:38 AM (GMT -7)   
I only live about 30 mins from the hospital, but for some reason I can't make myself go home.  I keep hoping he will finally realize who I am and where he is and I want to be here when that happens.  Also, he doesn't know when he is going to the bathroom and I worry about him laying all night in a mess.  At least when I am here I can check him often and make sure he doesn't.  But I am sure you are right and I should get some much needed rest. 
 
I am going home for most of today.  It is my grandson's 13th birthday and I don't want to miss that.
 
Thanks for your concern and thanks for healingwell.com where we can relate to others who know what we are going thru.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/25/2009 8:22 AM (GMT -7)   
I understand your concerns about your husband, but you do need to take care of yourself or you will be burned out before he even gets home.  I know from wives and partners here whose loved ones have come home after transplant that it's a long, hard road even once they get home.  I'm glad to hear you will be home most of today.  Enjoy your grandson's b.d.!!

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


parisdr
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 6/30/2009 4:14 AM (GMT -7)   
We are still in the hospital, and Mels liver is doing good, but his mind is not.  Most days he doesn't know who I am or anything else.  He doesn't know when he has to go to the bathroom.  Its like taking care of a 2 year old.  I am so discouraged.  The doctors don't understand what has happened to him and I certainly do not.
 
Not for one minute since the surgery has he looked at me and been my husband.  He acts a lot like my father did when he got dementia.  I am really scared about this.  I keep wondering if he will ever be better and if he isn't, then what next.
 
At times I wish he had never gotten the transplant.  At least before the surgery he knew who I was and I wonder if sometimes quality of life may be better than quantity.  He certainly has had no quality of life since his surgery,.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/30/2009 1:51 PM (GMT -7)   

Paris, about his mental state:  How are his ammonia levels?  Is he being given Lactulose?  Otherwise, it would seem strange for dementia to come on suddenly like that.  I really have no answers for you.  You will just have to take it one day at a time and pray for improvement.

Hugs,

Connie


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


parisdr
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 6/30/2009 5:28 PM (GMT -7)   
His ammonia levels are fine.  They have checked them.  The doctors are not sure what has caused all of this confusion.  I just hope it is because his body has been thru alot and he will eventually recover.  they are trying to get us a bed at a rehab facility here in Lexington, KY, and hope the change of scenery and increased activity will help the confusion.  I sure hope so.
 
Thanks for caring..
 
Diana
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