Husband waiting on Liver Transplant

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wingk
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 12/7/2008 8:02 AM (GMT -7)   
I am new to this forum and not sure how it works.  My husband was diagnosed with Hep C and Chirrosis of the liver in 1997.  They believe he contracted Hep C back in 1970 after returning from Vietnam and diagnosed with non A, non B Hep.  Until 1997 he showed no systems.  By the time he did he already had Chirrosis.    We are fortunate to have medical insurance and a wonderful doctor.  However, he has been on the transplant list for 4 years now.  His MELD score fluctuates constantly, it has currently dropped to a 9.  He suffers from Portal Hypertension and has had banding done for variceal bleeding.  He is currently suffering significantly from Ascites.  He has had 5 sono guided Parasentisis in the last two months.   Each time the fluid comes back faster.  They were going to do a TIPs procedure but found that he had blood clots in 3 blood vessels.  There is nothing they can do now because it would eliminate him from transplant.  His diuretics have quit working and his serum sodium is so low they do not want him to take the diuretics any longer. We watch his sodium intake but nothing seems to be working.  Unfortunately the MELD score is not affected by quality of live (which my husband has none).  My co-pay has gone up significantly and we are struggling with finances, he is going to have to have this procedure done once a week and it is becoming very costly.  I do not want to have to choose between having a roof over our head and my husbands medical care.  Does anyone know of any alternative methods to reduce ascites?  open to any suggestions.  Thanks for listening

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/7/2008 8:52 AM (GMT -7)   
Welcome to the forum Wingk. I am so sorry that your husband has this terrible disease. My husband was diagnosed a little over 2 years ago. I'm sorry that I can't answer your question. I know that ascites is a real problem with liver disease. My husband has never had to be drained, but he is going to have the TIPS procedure due to a massive bleed he had from varices in his stomach. He goes to the doctor tomorrow for consultation regarding the procedure.

I'll be praying for you and your family.
Butterflythree
 
There is always hope!


wingk
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 12/7/2008 4:55 PM (GMT -7)   
I am also sorry to hear about your husband.  It is a horrible disease for them and also for us care givers.  Is your husband on a transplant list?  My husband goes to Barnes-Jewish Transplant Center in St Louis, MO. It is a 5 hour drive for us from outside Kansas City.  I wish you and your husband well. 

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/7/2008 6:41 PM (GMT -7)   
My husband is not yet on the transplant list. His MELD score has not been high enough to qualify. His MELD score jumped to 17 a couple weeks ago after the bleed he had, but the doctors expect it to go back down. We were told when his MELD reached 15 or above and stayed there they would then do the work up to get him on the transplant list. My husband goes to St Louis University Hospital. It is about an hour from us, and I thought that was bad. They are both top hospitals. Although, St Louis University is located in a bad part of the city. You have to be careful about walking around outdoors by yourself. There have been muggings and shootings outside of the hospital. I come from a small town so I am not accustomed to having to watch your back all the time.
Butterflythree
 
There is always hope!


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 12/8/2008 12:41 PM (GMT -7)   
Hello Wingk and welcome to HealingWell. This liver disease ride is no joke as you are finding out. I don't think that they will keep him off diuretics forever. As soon as his sodium levels rise back up they may put him back on them. They adjusted my husband diuretics constantly as needed but they never took him off of them. We would up his sodium intake a little occasionally when it got too low with approval from his Hepatologist.

As far as your husband's blood clots.....is there some kind of med that they can give him to dissolve them? Most liver patients blood thins too much, this is the first that I have heard of blood clots.........

Get educated and 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.


wingk
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 12/8/2008 3:42 PM (GMT -7)   

Butterflythree,

Is it possible that our husbands go to the same hospital?  Barnes-Jewish is right on Kingshighway right off hwy 64 (i believe I170 now turns in to 64 highway).  It is connected to Washington University of St Louis.  Childrens Mercy is connected also.  Huge place.  The head of the transplant team is Jeffrey Crippin, my husband usually sees Dr Korenbalt but there are several others, they are all in what they call CENTER FOR ADVANCED MEDICINE.  It also is not in a good area of town.  We usually stay in Bridgeport which is about 15-30 min from the hospital.  They put my husband on the list when his MELD score was 13 because he was blood type "B". 


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/8/2008 5:15 PM (GMT -7)   
Wingk, St Louis University is right off of Grand, on Vista Ave. His doctor is Dr Bacon, although he never gets to see him. He usually sees a PA. I'm really starting to worry if he is at the right place. He has been with this Doctor for years, but they are really bad at communicating with each other. We went for a consultation today on the TIPS procedure and the PA couldn't explain anything to us. Just that he needs to have it done and that they may be needing to do a workup for the transplant list. When he was in the hospital for the bleed he didn't see his doctor one time. That really worries me. Someone was supposed to explain the procedure to us in the hospital but know one ever did. We are waiting for a call from the Radiologist to let us know when the procedure will be. I just don't understand the health care system these days. Are there too many hands stirring the kettle? It seems like neither one knows what the other is doing.
Butterflythree
 
There is always hope!


wingk
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 12/9/2008 8:26 AM (GMT -7)   
Here is my understanding of the TIPS procedure based on how it was explained to me:
 
They go in through the artery in the neck, putting a shunt basically through the liver.  It goes in through the vein that carries the blood in to the liver and then out through the Portal vein.  Basically it allows the blood to go through the liver without the liver having to process it.  This is suppose to eliminate the Portal pressure causing the Ascites and my understanding is that it also eliminates the possiblility of varaceal bleeding from the Portal pressure. 
 
You might contact your insurance company regarding getting a second opinion.  We had to do that.  We originally starting going to Nebraska.  Our case manager at the insurance company at the time was wonderful and suggested St Louis and getting second opinion.  Don't have such a great case manager now but did then....but grateful for the one we had then.
 
Hope all works out for you....

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/9/2008 1:16 PM (GMT -7)   
wingk, I just wanted to welcome you to the forum.  You will find a lot of info and loving support here.  I am a liver patient, but am currently stable.

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


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/9/2008 5:11 PM (GMT -7)   
Thanks Wingk. I did some research on the TIPS procedure and that is how I understand it also.
Butterflythree
 
There is always hope!


wingk
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 12/9/2008 6:34 PM (GMT -7)   
I hope that works out well for your husband.  I know we were very excited about the possibility of having a fix for the ascites.  We are talking to the doctors now about an infusion of albumin when he has his parasentisis.  Some kind of protein??  Not sure, did not understand it too well.  Will have to do some research on that.  Another Parasentisis tomorrow and then we will travel to Manhattan Ks to see our youngest daughter graduation from college.  A real positive for us right now.
 
Again I wish you well

mybaby
New Member


Date Joined Aug 2008
Total Posts : 15
   Posted 12/9/2008 9:19 PM (GMT -7)   
  Hello, I hope everyone is doing ok. My husband had the tips procedure done when he had a real bad bleed and the tips procedure can also cause more problems with the memory loss that comes with liver disease and the way it was explained is how it is done but it can cause more problems with memory loss because of the blood being rerouted, i just wanted you to know this, and im surprised that they didnt do it while your husband was in the hospital because they had to do it on my husband because that was the only way they could stop him from bleeding, but that was after they had already put 22 or more pints of blood in him cause it was coming out faster than they could put in him, but he doesnt have to worry about that anymore or suffer anymore, even though i miss him badly i know that now his battle and suffering are over, but please make sure they explai everything to you before they do the procedure.   take care everyone, Mary                                                                                                                                                              

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 12/9/2008 10:01 PM (GMT -7)   

Hello Everyone

Something I wanted to add.  We have been told on more then one occasion.  If the sodium is low you get extra points on your MELD score for that,  Everone should get that.  YOu need to ask.  There is something else you get extra point for but I can not remember what it is called.  It has something to do with the lungs.  Please check in to this I hope it will help.

 

JoAnn


wingk
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 12/10/2008 4:51 AM (GMT -7)   

JoAnn,

St Louis put in a request to UNOS asking that his MELD score be increased, it was denied.  I was told that Mortality rating is what they are looking at and that quality of life really doesn't play a role in adjusting his MELD score.

Mary, you are correct about the encephalopathy.  My husband suffers from this now and they did state there was a possibility that would get worse.  I am so sorry about the loss of your husband, I can not imagine how difficult that must be.

 

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