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CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 11/26/2009 9:25 PM (GMT -7)   
Hi all -
I'm new here and have been a caregiver for my partner for four months now as we learn and battle his diagnosis of cirrhosis.
We are currently in the process of evaluation at NYU. However, his ascites is barely controlable. He has at least 8 litres removed every 5 or 6 days.
His local GI and the doctors who perform the paracentesis have strongly urged that he have the TIPS procedure done. However, the Transplant Team is strongly suggested that he should wait until he is listed.
NYU denied his first presentation for listing citing a requirement to complete alcohol abstinence certification (or whatever you want to call it). This is not a problem as he is committed to sobriety and has begun the work to be placed on a waiting list for consultations.
NYU is telling us that he must be listed before having a TIPS procedure as UNOS will not list him if he "crashes" after the TIPS and is not already listed.
 
Is this true?
 
The ascites is wearing him down terribly and he just wants to be able to wear regular clothing and be able to be presentably seen in public.
 
Any advice?
 
Thanks to you all and I look forward to being a member of this community.
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/27/2009 2:53 PM (GMT -7)   

Hello, CGR, and welcome to the forum!  I'm assuming that your partner is on diuretics and still has to have drainings?  A TIPS is certainly something he should consider.  I know we have one person here (Rick) who had the TIPS prior to evaluation for transplant.  Fortunately, he did very well with the procedure, with no complications.  I know we also have a couple of other members whose partners have had TIPS.  I cannot answer with certainty your question about UNOS refusing to list him if he crashes prior to being listed.  However, how close is he to being listed now?  From what you posted, he has not begun alcohol counseling, but is on a waiting list.  Did I understand correctly?  It would go faster if he went to AA meetings (no waiting list.)  Would NYU accept documented AA meetings?

Hopefully Rick or someone else will be able to answer your question.

Connie


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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/27/2009 7:42 PM (GMT -7)   
Hello CGR I just want to welcome you to HealingWell. I am sorry but I don't know the answer to your question either......but it kind of makes sense to me. When it comes to liver disease and the transplant eval and procedures the Hepatologist's have the most knowledge.

Also my husband's transplant hospital did accept documented AA meetings, though I know all hospitals don't.........Connie right it would go faster so it would be worth checking into.

Again welcome to our forum..........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.


CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 11/28/2009 7:56 AM (GMT -7)   
Connie, Pink Grandma, Rick ...
 
Thanks for your fast and caring responses.
 
To answer some questions;
Frank was diagnosed 31 July 2009. Prior to that he usually had a little bit of a belly, but we wrote that off as too much good food and drink. about a month before that his appetite decreased and he began to lose weight at his waistsize, but not the abdomen. So, I imagine that the ascites was already active before his diagnosis and before we really noticed his abdominal growth before that.
 
He was placed on diuretics, Spironolactone and Lasix along with Lactulose. He was taken off all three because of bad signs from the kidneys and placed on Xifaxin. Eventually, he was back on Lactulose, but a small dosage. Those are working well with his system.
 
As far as how close he is to being listed, NYU has told me that they want him to be in therapy for at least a month  before they can list him, but that's not guaranteed. It could still be the 6 month standard. NYU says that AA is not acceptable because it is anonymous and therefore can't be documented. He has not had a drink since his diagnosis and is truly committed to sobriety. "I want to live" has become his mantra.
 
His MELD has come down a bit and is 10 right now, so we're way away from a transplant. We realize how fast that can change and we are prepared for that.
 
One of the concerns here is that Frank is Blood Type O. That means that he'll probably be on the list for a long time. We're afraid that the stint will give out before a liver becomes available. What happens in that case?
 
We've discussed this and Frank & I agree that quality of life has preference over quantity. Sorta like the old joke about the man who complained about a restaurant he visited. "The food was terrible, I couldn't stand to eat it. Not only that, but the portions were too small!". Anyway, the ascites (he is that pregnant skeleton right now) is keeping him from attending functions, going out in public, being seen by friends and visitors, shopping, being photographed, etc.
 
His sodium level has been low, but is has been historically. We keep him at or under 2000mg daily. We wondered about that effect on his ascites as well.
 
Once he's listed in New York, we plan to start the process again in Pennsylvania (where we live). We've been told to get to Florida, but  that's not feasible because of distance and lack of friends / family there to stay with. In two years we hope to have moved around some investments and obtain a small place there so we can list him there as well.
 
Also, his navel is popping out a bit and his flesh there is thinning. We're afraid that might be a beginning sign of herniating and we're afraid of it rupturing.
 
Now, after further conversation with NYU, their concern is that if Frank "crashes" after the TIPS procedure, they say that he will have no safety net if he is not already listed with UNOS. That makes sense to me, but he says he can't live like this for 6 months (if that is how long it will take to list him). Our local hospital, PMC - Pocono Medical Center in Pennsylvania, is where he goes for paracentesis. His GI there, the doctor in radiology, and the nurses are eager for him to have the procedure and will telephone me Monday with a date; probably 08 December.
 
I'm just not sure what to do. I don't know if I should just go ahead and schedule the procedure and then tell NYU, or make Frank wait until NYU says to go. Of course the ultimate choice belongs to Frank and I just want him to be happy and comfortable.
 
Thank again for your help in this and for your dedication in this forum. You're a gift to many.
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/28/2009 10:38 AM (GMT -7)   

CGR, I just want to correct that bit of info you were given about AA.  Attendance CAN and IS documented when needed.  There are many people who go because it is court-ordered or ordered by their jobs.  They have a form that is signed by the person chairing the meeting AFTER the meeting is over.  If NYU would allow him to attend meetings, they could make up some kind of form for him to take with him to meetings and have it signed by the chairperson at each meeting.  Be sure to ask the transplant team about that.  I know my co-moderator's husband went to AA, although he passed away before he could receive a transplant.

Hugs,

Connie


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


CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 11/29/2009 6:35 AM (GMT -7)   
Rick,

Thanks for the advice. I do share these with Frank and we both agree that you have a great approach to what you are going through. You truly are an inspiration and you do wonderful work here.

We're not sure exactly how much of Frank's liver is left functioning, but his MELD dropped from 15 down to 10 and yesterday he actually lost an inch of girth around his abdomen. He always gains steadily between paracentesis. We're not sure now about going for the TIPS. We are eager to have it done, but we're afraid of worsening the situation. So, we'll see how his paracentesis goes Tuesday and take it from there.

Just curious, with 10% of your liver functioning, where does that put your MELD?

CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 11/30/2009 11:55 AM (GMT -7)   
Rick,

We've been doing a fine job of enjoying life as best as we can, given the many appointments and restrictions due to the ascites. We always did enjoy life, so that part is easy!

We deided to go ahead with the TIPS and that is scheduled for December 10.

I think part of what delayed our decision is that denial tends to rear its ugly head every now and again - despite all of the meds, doctor accpointments, home care, research, etc. When a string of good days come along and a little improvement is seen, we tend to think that we actually have more control than we do and it becomes easy to not want to proceed with something like TIPS. I found myself worrying that having the procedure done will essentially start Frank's clock ticking downward, and expressed that concern to him. The reality, of course is that his clock is already ticking downward.

All in all, we feel strongly that the TIPS procedure is the wise decision and we're eager to take that quality of life that he will have and use it as a gift. I suppose that when it comes dow to a decision of quality of life versus quantity of life, there is always more quantity in quality than there can ever be quality in quantity.

We'll keep you informed of how things progress and I hope that we see a posting here soon about a wedding that for your daughter!

Blessings -

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/30/2009 1:57 PM (GMT -7)   
CGR, congrats on having made a decision!  Our thoughts and prayers will be with you guys.
 
Hugs,
Connie


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

Post Edited (hep93) : 11/30/2009 2:38:49 PM (GMT-7)


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 11/30/2009 2:46 PM (GMT -7)   
CGR,
I want to let you know that my husband had TPS done and it was a big improvement with the fluid issue it was in place for 9 years without complication. He did have it put in with a meld score of 10 and not listed for transplant yet, the poor guy would slosh like a water bed when he walked and would have as much as 14 litres drained at a time. The enulose will be a main staple for him as the TPS does increase ammonia build up, he did have to go in every 6 months to have it cleaned out as it does start to clog up. It did allow for a decrease in the fluid pills which saves your kidneys alot of wear and tear. Doug was back to being more active and did go on a few trips out of state to see family and friends so there are some positives. The scale will also be your friend.... have hime weigh in everyday at the same time and the rule of thumb is to watch for 3 or more pounds in 24 hrs if that trend continues to second day they will adjust fluid pills accordingly.
Sue
When I started counting my blessings my whole world turned around.


Affected by Disease
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted 12/2/2009 1:23 PM (GMT -7)   
Hello all,

No one has spoken to me about the option of TIPS. She has a MELD score of 16. Ammonia is 83+-, and is on 4 doses od Lactalose each day. Her ascites is bad but not giving her pain. I assume they are not suggesting it due to her ammonia, and risk of bleeding to death. Any info?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/2/2009 2:21 PM (GMT -7)   

With a MELD and ammonia level that high, she may not be a candidate for TIPS.  Has she had to be drained at all?  It's usually when the drains are becoming too frequent that TIPS is considered.  I'm sure that Rick or someone with more TIPS info than I can elaborate.

Hugs,

Connie


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


Affected by Disease
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted 12/2/2009 3:23 PM (GMT -7)   
I don't think she has been drained at all.

Affected by Disease
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted 12/3/2009 9:12 AM (GMT -7)   
Thanks Rick, I guess they have the fluid under control if they are not considering it. Thank you for the info.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/3/2009 9:39 AM (GMT -7)   
Mike had TIPS three years ago... and worked well for him....
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