Does anyone here have experience with TIPS

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La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/11/2008 6:43 AM (GMT -7)   
My hubby has been hospitalized since Monday.  (Today is Friday)
The doctors have drained 14 liters of fluid off his abdomen and 4 off his lungs.
 
The transplant doctors are talking about doing a "TIPS" procedure on him, to keep the fluid off his lungs.  If he developes an infection in his lungs we have a whole new set of problems.
 
I know what TIPS is.  I know the side effect is increased Encepholopathy.  Which scares me.  But, an infection in his lungs also scares me.
 
There is no good alternative. 
 
They are probably going to release him today.  The team has decided to NOT do the TIPS this time.  I am kind of relieved about that.  Although, I don't really have any relief.
 
Question:
Does anyone here have experience with TIPS?  Any thoughts or comments or 'words to the wise'?
I would appreciate any input. 
 
***(Thanks and a word to "Exhausted/JoAnn" - too bad you already took that "Exhausted" name.  Because, baby, I am EXHAUSTED too!)
 
La Bunna
 
 

julykid
Regular Member


Date Joined Jul 2008
Total Posts : 20
   Posted 7/11/2008 7:03 PM (GMT -7)   

hi la bunna,

i know you are sooo exausted...hang in there as i will be thinking of you and your husband.

thoughts and prayers,

michele


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/11/2008 9:16 PM (GMT -7)   
La Bunna, I am so sorry that your husband is doing so badly. I have read a little about the TIPS procedure, but we have not been through it. I will pray that your husband receives a transplant soon. Hope you are able to get some rest.

Take Care!


Butterflythree
 
There is always hope!

Post Edited (Butterflythree) : 7/12/2008 8:02:34 AM (GMT-6)


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/11/2008 10:09 PM (GMT -7)   

LaBunna

I feel for you.  Last September we went through the exact same thing.  Actually it happend about three times.  Jerry's gastro Dr. finally sent him to Vanderbilt to have the the TIPS done.   They took him in a ambulance because he had been so sick so they just kept him in the hospital in Knoxville until Vanderbilt had a bed.  Vanderbilt Dr. did not want to do it yet because they felt it could be handled by diuretics.  They had not pushed his kidneys to the MAx.  That was 10 months ago.  I have cooked myself into exhaustion!  My second home is the grocery store.  Everything fresh or frozen.  You have to realize I am married to a southern boy!  No more biscuits and gravy and so on.  Lots of fresh fruit and smoothies with protein.  But you have to take away the protein if the amonia get high.  It is a whole education but an important one.  The protein should be soy based.  At one point he could only have 4 cups of water a day just enough to take his meds.  They had him on a lethal dose of diuretics.  He has since been cut back because his kidney are screaming.  Vanderbilt is now talking about a TIPS.  Jerry wants to hold out as long as possible.  I take him to work just about every day.  He can't do much but needs to be there just for his own self worth.  Today we had a recliner taken to his office so he can nap some. 

You are right about the Tips.  I think there are a few on this forum that have the tips.  We could probably do a conference call with them and learn a lot.  From what I understand its hard to control the amonia.  I'm not sure how I would handle waking up one morning and having my husband in a comma.  That just might push me over the edge.  I have been thinking of researching TIPS more because I know its coming.  I hope this was not too long and I helped you in some way.  Jerry's feet and legs are now swollen bad where they weren't at all before so I know its getting worse.  He did have the fluid in the cavity around his lungs.  Shelly might be able to put some light on this subject.  She is great.  Also I think there is someone else on this forum with medical knowledge.  I do remember talking to the Dr's that drained Jerry around his lungs.  They told me the procedure is safe and they have been doing it the same way for many years.  If that makes you feel any better.  Also Jerry has been fortunate enought to not have any infection in his fluid.  Let me know if there is anything else I can shed light on for you.

JoAnn


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/12/2008 6:31 AM (GMT -7)   
Thanks Exhausted,
I had a reply from a guy - Way Cool - on my first post, that has had the TIPS procedure.
I've just asked him to tell me where he thinks his Encephapathy (spelling this word is a major problem for me... let's use an abbreviation, like "Enceph'y") is now that he has the TIPS.
 
We have my honey's Hepatology doctor - who is not really in favor of the TIPS and then we have his transplant doctor - who is in favor of the TIPS.
 
I am pretty sure that next time he goes in they are going to all agree to do it.  And I am really scared about it. 
 
Oh, shoot.  Let's be honest.  I am really scared about them NOT doing it, too.
 
I am really just plain scared.
 
A mini bio of our life.... we've always been 'workaholics' and 'loners'.  We just stuck together and did things we enjoyed by ourselves with our dogs.  ( We are dog nuts)  His small family is all deceased. My family is scattered all across the United States and none of us were ever close to begin with.  Except my dad.  Whom I buried on July 2 after a long long long battle with cancer.  I am still grieving dad's loss and am crying about him right now. OK.  Pull myself together now....
Anyway, we've put ourselves in a position of being 'independant'.   I am regretting that right now.  I could use help.  But my nearest and dearest and most valued friend lives 300 miles away.  My nearest family lives 200 miles away.
 
My once perfect and sweet life is now a Made for TV Movie.   And a scarey one, at that.
 
 
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 7/12/2008 4:28 PM (GMT -7)   

LaBunna 

I sure know what you mean about not wanting it then wanting it.  I'm scared also.  I think if Jerry continues to get drained as often as he has lately Vanderbilt will want to do the the TIPS.  Its a situation your are darned if you do darned if you don't!  There is such a risk of infection with the Para (can't spell that either.)  Not to mention my husband is wasting away to nothing.  He looks like an ethopian suffering from starvation.  His stomach is huge but the rest of him is so skinny.  Except for the swelling in his legs now.  darn what a horrible disease!!!  Is there any way you could forward me the reply from the person that has the TIPS.  I sure would like to read it.  My e-mail is on my bio.  Thank you so much. 

Also we have too many children to have dogs.  Even though they would have been a lot cheaper.  We love our Grandchildren.  We have 11 and there is nothing better.  I don't know if you have read my other posts but Jerry's son wants to do the live transplant.  You might want to read on that.  I can't help him because I don't have his blood type and I'm over 55.  Also blood related is a better match.  Let me know if there is anything else I can help you with.  There are people on this forum that know much more then me.  I can say that I have already been through exactly what you are going through.  Jerry had even more then 14 liters drained but they had to do it three times to get it all.  Because his blood pressure go low.  Also he suffered from extreme muscle spasms.  It was horrible.  He was screaming and I almost had a heart attack.  I was sure he was dying.  They have to give him major pain meds.  That really upset me because anyone with liver disease doesn't need pain meds.  But he was in so much pain I just had to let them do it.  The pressure we are under is HUGE.  Also I don't know if I mentioned it but a lap top is handy to have at the hospital.  I have a card in mine so I can get on line no matter where I am.  We had it because we traveled a lot and Jerry needed to keep in touch with work.  It has been a good thing for me to have.  I can also research different things while he is in the hospital and be right there with him.  You might think about that. 

I sure do know what you mean about nearest and dearest friend being so far away.  All my really close friends are on the West Coast where I moved from when Jerry and I married.  I miss them so much.  I buried my dad in 1992 and I still miss him.  Jerry's mom lives 10 minutes from us but she is too elderly to help plus if she knew the truth about Jerry it would kill her.  She lost Jerry's sister at 41 ys old from Breast Cancer and his Dad 8 months later from Lung Cancer.  Then last year she last all three of her brothers in 7 days.  All from a different illness. She has been through so much.  I'm so sorry to hear about your dad.  I know how hard that is. 

I hope I haven't gone on too much.  Let me know if there is anything else I can do and hang in there.  Just educate yourself as much as possible.

JoAnn

 


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/12/2008 4:38 PM (GMT -7)   
La Bunna & JoAnn, You are both going through so much right now. I am praying for both of you that your husbands get their transplants really soon. I really hate this disease also and wish that I could do something to wipe it from the face of the earth. It is really just the beginning for my husband, but coming here has been helpful in preparing for what may be to come.

Always in my thoughts & prayers.
Butterflythree
 
There is always hope!

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