Too late for "TIPS"

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La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/17/2008 10:03 AM (GMT -7)   
I decided to start a new post on this "TIPS" issue, as my last one was (dumbly and accidentally) labeled 'no subject'.
 
Anyone interested can reference that old post to see what our situation was last week.
 
I took hubbie to his hep dr. (we go to Rush University hospital in Chicago) on Tuesday, for a check up after his horrible hospital stay last week.
 
As you might remember, at that time my husband was under the care of the Transplant Team and the had him placed on the Transplant Floor.  (A lot of false hope came from that!)
The Transplant Team had decided that hubbie is going to have to have the "TIPS" procedure, as the fluid retention /acites had entered his lung area (they drained off 4 liters from his lung sac).  They are concerned about an infection in his lungs if this continues.
But, they released him and told him "next time".
 
Back to Tuesday and our hep dr. visit; 
He told us 'no way' would he allow them to do the "TIPS" on hubbie.  He said it is too late for hubbie to have it.  He explained that this procedure, which 'bypasses' blood past the liver, could and very likely would at this late stage, cause hubbie to go into complete liver failure.  
 
Hep dr. wants us to continue on the path we are on, with all the meds and the draining of the fluids (even if it becomes a weekly hospital stay) until we reach the level of actual transplant.
 
I am not a medical type person.  I am not even medically 'saavy'.  I keep blinking and scratching my head and trying to absorb all that is happening to us. 
But, I have to tell you, I was relieved to hear that we are not going to do the "TIPS" procedure.  Call it a gut reaction or call it a premonition or call it a misconception or call it whatever you want - I am relieved about it.
 
Just as information to all.... and also for the good feeling of 'venting'....

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


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 7/17/2008 1:11 PM (GMT -7)   
La Bunna

I totally understand your frustration with the conflicting information that two different teams have given you. I am glad that you are feeling good about the final diecsion that was made. I am constantly feeling confused and trying to absorb all that is happening to me Someimes we have to go with our gut.

Venting always feels good.

Lucy

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/17/2008 7:04 PM (GMT -7)   
La Bunna, I am glad that you are happy with the decision for no "tips" procedure at this time. Nothing about this disease is straight forward. It is all so very confusing and frustrating at times. What is good for one patient may not be good for another. My husband has not had to be drained. I am afraid of the procedure also. My husbands encephalopathy is bad enough already. I don't know what I will do when we have to make the decision. Hopefully we will be able to trust the doctor's, but that is not an easy thing to do these days.

It always helps me to come here and vent also. I am still praying that your husband receives a transplant soon.

Take Care!
Butterflythree
 
There is always hope!


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/17/2008 8:30 PM (GMT -7)   

Hello LaBunna

I read you post with much interest.  My husbands legs are now swelling really bad.  He is getting drained every week now and they keep increasing his Aldactone.  Then he becomes dehydrated and they have to back off.  BUT,  the swelling in his legs is not going down.  I am scared to death they are going to do a TIPS on him.  His Gastro Dr. is trying everything.  But Vanderbilt will have the final decision to do the TIPS or not.  To top off that problem he's now walking around the house with a coat on its 80 degrees in here.  He has put a heater in our bathroom.  The Dr. told me last week he will probably need another blood transfusion in the near future (that will be the 3rd one). My question to you is how did you finally make the decision on who to listen to?  I'm a little comfused that you have two transplants teams.  We only have one heptologist and one transplant team.  Did you change hospitals?   It really doesn't take a lot for me to be confused these days.  I'm fairly certain I have no brain left what so ever.  I just walk around in a haze!  Its a nightmare!  One day I want him to have the TIPS the next day I don't.  I think I'm getting close to one of my melt downs.  They are coming more frequently now days.  I'm sorry for going on I guess I just want someone to tell me what the hell to do.  OOPS.  I sure hope you are doing better then me.  Thank God for this forum.

JoAnn


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/17/2008 9:18 PM (GMT -7)   
My heart goes out to all of you. Take a little break for yourself. I know it's hard to find the time but for your own well being you need to. You won't be of any help to your husbands if you melt down. And if you do.... who's going to take care of you?
None of you are the energizer bunny. You can not keep going and going and going without some kind of repercussion to your health......body or mind. You guys know..... that I know what I am talking about. I am still paying the price for not taking care of myself. I don't want the same thing to happen to any of you.


Thoughts and prayers to all of you.
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.


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/18/2008 4:41 AM (GMT -7)   
Exhaused ( I love that name, it is so appropriate!)
 
Didn't mean to confuse.  We only have (1) hep doctor and (1) transplant team. 
We've been with our hep doctor (who is a professor and teaches hepatology) since our 2nd Interfuron/Ribaviron treatment in 2004.  As stated, those Interfuron treatments failed and almost killed hubbie.
 
The transplant team are 'new' to us.  Although we've been on the transplant list since Feburary 2008, our only contact with them was to fill out legal papers and meet a contact nurse.  After last week, we now know them pretty well.  In fact, the head of the transplant team examined hubbie in the corridor Tuesday - before we met with our hep dr.  We didn't have an appt with the transplant dr., but he simply saw us walking and ran over to us and proceeded to examine hubbie right there. 
 
As far as 'who do we believe' and 'how did we make the decision'...... well, like I said.  It was a gut reaction.  The trust we have place in the hep dr. for all these years coupled with our dread of the TIPS procedure coupled with that phrase "could trigger complete liver failure" all added up to our decision.
 
As a matter of fact, I'm not even sure it was 'our decision'.  Hep dr. was kind of like this "I won't let you have the procedure, it's too risky at this point".  It was kind of HIS decision, really.
 
And - yes, hubbie is also wearing fleeces and covering up with a wool blanket in our Chicago 92 degree weather.  I think that their bodies are so sick, they can no longer determine or process heat.
 
Oh, yeah, that's my 'medical' opinion. 
I make myself laugh sometimes.  I am such a doofus.
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 7/18/2008 12:29 PM (GMT -7)   

Hi LaBunna

I totally understand now.  Thanks for explaining.  Sounds like you have some good Dr. on your team.  I think we have good Dr. also.  As you know the Jury is still out on that one.  I have trouble remembering  Jerry's Dr. name so I call him Richard Dryfus because thats who he looks like.  Actually it was a cross between Dryfus and George Lucas.  I was going to call him Richard Lucas or was it George Dryfus but I had too much trouble remembering it.  So now he is just Richard Dryfus.  He also has a Clark Kent on his team. Some how I just got side tracked.  I know now I'm loosing my mind.  

I would like to say I'm better today but not so.  We both layed down and took a nap yesterday.  While I was sleeping Jerry woke up and drove to the store.  I slept throught the whole thing.  He wanted to make blueberry cobler.  His Secy brought him fresh blueberries.  To make a long story short he made it back from the store and made the cobler.  I must have been in a comma.  He bumped his leg on something and started bleeding.  I slept through that also.  I think its probably a good thing.  It seems he's bleeding really easy.  I think that will affect his MELD score.  I just can't let him out of my sight.  I need to check on him.  Its been 15 minutes and no sound.  Hope you have a good week end.  Please add Jerry to your prayers.

JoAnn

 

Oh I might let you have exhausted and I will take Looney


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/18/2008 12:34 PM (GMT -7)   
Jerry will be in my prayers as of RIGHT NOW. 
 
Curious - do you know his MELD score?  What is it? 
 
My hubbie's is now 19.   I am soooooo glad!  It actually got worse after our hospital stay last week!  I want it to get worse and worse....
 
To anyone that doesn't understand, that would sound terrible!
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 7/18/2008 1:39 PM (GMT -7)   

Wow that is good news --I think.  We have to be careful what we wish for. If you know what I mean! I'm with you thought they just can't stant much more.   Jerry's MELD was a 17 the end of May.  I calculated it myself in June while he was in the hospital and it was an 11.  Crazy isn't it.  We do another blood test next week.  I don't know if I explained but when he is hospitalized he goes to a hospital in Knoxville.  But for transplant he goes to Vanderbilt which is 3 hrs away.  So we go for check ups to see Richard Dryfus every 90 days.  Our next is 8/27.  I'm sure his MELD will go up because of the blood issue.  Also I think he's getting closer to a transfusion.  Has your husband ever had a transfusion?  I haven't found anyone on the forum that has needed one.  That concerns me.  BUT everything concerns me these days.  What dosage of diuretics is your husband taking?  Also how long has he been on the transplant list?  The Dr. at Vanderbilt told us the average time on the list until transplant is 1 1/2 yr.  Can you believe that.  Ofcourse that is average. Need to go fix more Food.    I know this sounds crazy but I think I'm going to have a glass of wine and some cheese and grapes.  Hang in there.

JoAnn


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/18/2008 2:06 PM (GMT -7)   
Hubbie was placed on the transplant list in Feb of this year.  We signed the legal papers then.  So - 5 months.
He is currently on Lasix twice a day - 60 mg each time  and Aldactone once a day 150 mg.  He takes a lot of other pills, like celebrex for the depression and of course he takes a BUNCH of Lactulose.
Yes, he has had transfusions while he was in the hospital.  (He's been in 6 times since January 7th of this year).  They always have to give him something before they "tap" / "drain" him because his blood won't clot anymore. 
****I see that is happening to Jerry, now, too.*****
The transfusions have been either 1. platelets or 2. albumin or 3.  jeez I can't remember.  Something.  Total blank.  Sorry.
 
New symptom has started since yesterday... his hands tremble.  He went to change a light bulb and I was afraid he would break it.  He shakes (and looks and walks) like a 90 year old.  My poor poor darling.
 
Wine time?  Already?  By golly it is!  I'm IN!
 
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 7/18/2008 2:22 PM (GMT -7)   

"Wine time?  Already?  By golly it is!  I'm IN!"

No fair, LaBunna, for those of us who can't join you!!!   nono

Just kidding, of course.  Can't join you, but you enjoy.  You (and all the other wonderful caregivers) deserve some relaxation.   yeah

Hugs,

Connie


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/18/2008 3:07 PM (GMT -7)   

Oh MY what was I thinking.   I'm so sorry Connie but it was really good.  I actually had an out of body experience.  It felt so good.  Now back to reality!!  Hey Carol you can join us also.  You deserve a break today!!!  OK RealIty.  LaBumma I have to ask?  Have they given your hubbie any time?  I'm afraid to ask in front of Jerry.  Also Jerry has had the shaking a lot.  Usually when his hand shakes his amonia is high so watch that.  Jerry has had it so bad he couldn't even eat.  I had to feed him.  I can't believe your hubbie can even change a light bulb.  One of the nurses told me when he starts shaking like that its called the liver flap.  So watch him close.  You can usually smell it that is if you have a sniffer left.  Ok Meds-Aldactone 300mg every morning, Lasix 1 mg every morning (I'm not sure about that because it should be in 10mg - 20mg etc doses) Hydroxyzine 50mg three times a day (I have cut this back because it makes him so drousy and it really doesn't work well)  Sertraline 100 mg a day.  This is suppose to help the itching also and also depression. My husband does not even know what depression is.  He has a really strong mind.  Protonix 40 mg twice a day this is for his stomach.  He vomits ALOT.  Also the lactolose two tbl 3 x day or 4 x a day etc etc. Oh yes he is on Neomycin 500 mg twoce a day.  That is antibiotic but used to lower amonia.  I think I might have at least a bachlors in Pharmicudical.  That is if I knew how to spell it.  OK one other think I have noticed is Jerry's doesn't seem to be able to count good the last few days.  Which is really unusual for him because of his Engineer brain. I think I read something like that in Shelly's ESLD stages.  I will have to go back and look.  Also did they tell you how high your husbands MELD has to be before he moves to the top of the list.  Jerry was told because he is O blood he will have to be in the mid 20's so he still has a long way to go.  I really hope the life donor things works for him.  I need to get off here.  No more wine for me.  I have not seen the sun today so I have to go outside and talk to my flowers.

JoAnn

 


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/19/2008 8:12 AM (GMT -7)   

JoAnn -

The dr. mentioned a MELD score of 20+.   No one has ever given us a 'definite'.  And the dr. also said that if hubby goes into crisis (liver failure or liver cancer or whatever other horrible thing could end his life) and is given 7 days to live ----- hubby goes to the top of the list.

 

How's that for "good news/bad news"?  Yikes. 

 

Also -to Connie.  I regret being so insensitive yesterday.  I am new to this forum concept and I wasn't thinking about what I was saying to Joann being 'broadcast' to everyone else, also.

I will try to keep my foot out of my mouth from now on.  (Even tho you were really a good sport about my faux pas)  Sorry!!!


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 7/19/2008 8:57 AM (GMT -7)   

LaBunna

We were told the exact same thing about the 7 days.  Jerry is not doing good today.  Seems to be a little spacey.  I know he's pooping OK so its probably low blood driving up the amonia.  I have learned that also.  There are several things that make the amonia go up.  Low blood being one of them.  Also infection but he's on neomician so that should be the problem. 

Good God what next.  I'm good today so I feel I can tackle almost anything.  Hope everyone is doing good. 
 
JoAnn

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/19/2008 2:42 PM (GMT -7)   

La Bunna and JoAnn, please don't worry about upsetting me or others who can't drink.  We sometimes wish we could, but know that would be certain death...so it's perfectly okay for you caretakers to enjoy some wine...and you guys certainly deserve it.  I've been alcohol-free for so long (22 years next month), that it doesn't even bother me being around someone who is drinking, as long as they are not alcoholic drinkers or drunk.  What I do crave occasionally is a cigarette--especially if I get a whiff of one.  I gave up nicotine 5 1/2 years ago.  But I've heard from heavy smokers, who have been nicotine free for 10 yrs. or more, that they still get a craving occasionally.  It's just a fleeting thing and I don't dwell on it.  Good thing my attention span is short, because 2 min. later I don't even remember wanting it.

about the "flap," what I have read is that if they hold their arms out perpendicular to the body and they "flap," that is a sign of ESLD.

Aside from being so darned fatigued all the time (sleeping an average of 10 hours a day), it's hard to believe that I even have liver disease or ever had cancer.  Which makes it hard to decide about treatment for hep C.  I know if I don't do it, I could (and probably would) progress to ESLD, liver failure, or have a recurrence of liver cancer.  From people I know who have undergone treatment, they all tell me how very sick they were during that year, but all who did it and cleared the virus say it was worth it.  I guess I just need a little break before I start another assault on my body.

Hugs and "cheers,"

Connie


Post Edited (hep93) : 7/20/2008 9:39:04 PM (GMT-6)


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 7/20/2008 6:00 PM (GMT -7)   

Hi Everyone, I was reading up on pro and cons of TPS decisions. When you have a TPS you are bypassing the liver and slowing fluid retention which is good if thats a problem in earlier stages, but in later stages it can cause liver failure because you are no longer using what little is left and it really shrinks like a dried sponge. My Doug had TPS done early but it has been plugged up now as it was causing chronic encephalopathy and several episodes of hepatic comas. So TPS can be good sometimes and not good others. You have to believe in your doctors choices and you gut too. Its our gut that keeps us from being lead like little lambs.... hang in

Sue


When I started counting my blessings my whole world turned around.


okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 7/20/2008 7:08 PM (GMT -7)   

Hello all

Just a note from my experience with my husband,we found out he was sick in Aug 07 and had the transplant in Oct 07.  He had Hep C-Cirrohsis-Liver Cancer.  We didn't know about the liver cancer until the transplant, or probably wouldn't have had the transplant as it was very advanced and had spread.  He now has liver cancer and is bad.  Jerry did have to have a blood transfusion on the way to the main hospital.  I stopped at a local hospital on the way and they wouldn't transport until he has some blood.  One thing to always watch for or question your husbands about is their poop.  I'm sure the docs have told you about black or very dark poop, there could be bleeding.  We had that a few times.  Jerry was cold and is still cold.  We have no idea why his disease advanced so fast but it happened.  We have a great transplant team in OKC, the only place in Oklahoma that does transplants.  I hope the best for all of you.

Helen


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/20/2008 8:25 PM (GMT -7)   

Thank you all so much for the info.  I think I understand the TIPS now.  I just didn't understand why the Dr. for LaBunna hubbie said the TIPS could put him in to Liver Failure.  Now it makes more sense.  I do totally trust Jerry's Dr. at Vanderbilt.  I just get upset with him because he never fails to find something we didn't do exactly right.    I feel like he's treading us like kids and we got a bad report card.  I just have to deal with it I guess.  I totally understand the perfectionist personality because I'm married to one but I don't need another one in my life.  Especially while I'm dealing with this rotten disease. 

Helen, how kind of you to take the time to write in the middle of your fight.  Please know that I pray for your husband along with mine.

JoAnn


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/20/2008 8:57 PM (GMT -7)   

Sue

I have a question for you.  Where does the fluid go? 

Thanks Again

JoAnn

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