We have a liver!!!!

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AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 9/15/2009 5:20 PM (GMT -7)   
I know I just posted yesterday about getting listed!!! Well this morning around 2 we received "the call". The voice on the other end of the phone said... "We have a Liver, bring your mother in law in".
 
She went under the knife at 3:00 pm today and should be out in 10 to 12 hours. We are just pinching ourselves, to makesure we are not dreaming. This all just worked so quickly, which we are thankful about, and on the same side, we are torn as we know that there are those who have to wait so long and get so much sicker before they get the transplant.
 
Thank you all, and now we are getting ready for our new chapter or shall we say a new hill on this roller coaster ride called "Life"
 
 

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 9/15/2009 5:24 PM (GMT -7)   
yeah yeah yeah So happy........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
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Date Joined Jul 2005
Total Posts : 12014
   Posted 9/15/2009 9:40 PM (GMT -7)   

Amee, what a blessing!  Wow, that was fast!  Here's hoping that all goes well for her and she will have a good recovery...but be prepared for a few bumps along the way.

Hugs,

Connie


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


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/16/2009 8:08 AM (GMT -7)   
Amee.....I am so excited for you all!! Such a blessing.....prayers for a good recovery!!!

Mer

AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 9/16/2009 8:20 AM (GMT -7)   
Thank you all for the positive thoughts. We have hit a small bump in the road during the surgery. The surgery ended at midnight, and when the doctor spoke with us, he said that her old liver has shrunken so much and was much smaller than the new liver. The shrinking of her old liver also caused her abdominal wall to shrink as well, they were not able to close the insision completely. It is open by about 3 inches. They are keeping her sedated, and plan on taking her back into the operating room tomorrow after her abdominal muscles have relaxed a bit. She is on a vent as well, but all in all she seems to be doing very well. The new liver is working and her kidneys look great other than an infection which they are keeping a close eye on and she is on antibiodics for that.

I will post again later. Now I think I will try to get some rest.

Thank you ,
Amee

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/16/2009 11:16 AM (GMT -7)   

Thanks for the update, Amee.  Get some rest and keep us posted on her progress.

Hugs,

Connie


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


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 9/16/2009 3:13 PM (GMT -7)   
Okay so tomorrow morning they are going to take her back in to the OR to close her up completely. They will then stop the medications that are keeping her in a paralysed comma. She will remain on a ventalator until she is able to breath on her own. So far the liver looks great and is doing it's job perfectly.

The doctors are talking about an experimental anti rejection drug. It's called Everolimus. It is approved for use in liver transplant patients over seas. The hospital is taking place in a Novartis trial. Apparently the side effect of prograft show problems to their kidneys after prolonged use. This new drug is has it's own side effects but not on the kidneys. It lowers the blood counts, and they have noticed a slight increase in cholesterol. My question here is have any of you heard about this new drug and if so what have you heard.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/16/2009 5:07 PM (GMT -7)   

Amee, that's good that she's being closed up tomorrow, as being open she is very susceptible to infection.  I've not heard of the new drug, but perhaps someone else has.

Thanks for the update and remember to take care of yourself!

Hugs,

Connie


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


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 9/16/2009 7:33 PM (GMT -7)   
I remember reading that someone else whose mother recieved a transplatn that they had her on Pobafol (??? spelling not so great) Well tonight when I visited there was this glass bottle that had this white liquid that look like milk, hanging on the IV and she is getting this medication via IV. I asked why she was getting it and what the side effects are. They are giving it to her to keep her very sediated. They didn't really answer the side effects of the medication.

Any advice on that would be appreicated too.

Connie than you so very much... I do need to take care of myself too... I'm 4 months pregnant and getting worn out quickly these days. I appreciate the hugs!!!!

Thank you all SO much!

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 9/16/2009 8:04 PM (GMT -7)   

Amee  I have not hear of the new drug but I'm curious to learn about it.  Jerry is on Prograf and he is having problems with his kidneys.  That really concerns me because right after his surgery his kidneys were not doing well at all.  It took a couple of days.  He's had kidney problems for two years now.  You need to trust those ICU nurses.  I know when Jerry was in ICU he had his own nurse that sat in the room with in 24 hrs a day.  They were specially trained.  I know I felt so secure.  I was worried when they sent him to a room.  I hope someone is helping you.  You need to take care of you and your baby.  Just think Gramma will be well enough to hold that baby.  That is so special.  I will say a prayer for you and your mother in law.

JoAnn


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/16/2009 8:26 PM (GMT -7)   
Propofol is the drug you're thinking of Amee...the one that purportedly killed Michael Jackson.  It is normally used to render patients unconscious for surgery, but must be strictly monitored.  I'm sure that they are doing just that with your MIL.   MJ shouldn't have been getting the drug at home...it's been well reported that it should only be given in a hospital setting...and especially not just to get some sleep.  He also had been given an array of muscle relaxants and tranquilizers prior to the Propofol.  I would bet that the physician in question dozed off and failed to monitor Jackson's respirations, etc., so he simply passed away from the overdose.  Quite a different scenario.
 
If they now have an antirejection drug that spares the kidneys from damage, that is great!  I know that kidney failure can be a real concern.
 
Prayers for your MIL's continued good recovery and also for the health of you and the little life inside you.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 9/17/2009 10:21 AM (GMT -7)   
They took her back in for the surgery this morning to close up her inscision. All went well and they are stopping the chemical paralysing medications. We are hoping that she weill be somewhat awake later this evening. She looks really great, considering what she's just been through. Her skin has already began to clear up form the skin issue that she had prior to the transplant. She no longer has the yellowing of the skin from the jaudice.

Now we wait until she is up and walking.

Exhausted... the new medication has not yet been approved by the FDA, which could take a few more years after this study is completed. But maybe there is a clinic near you that is participating in this trial. Although I believe they only want to try this on patients who have just received a transplant, it would still be worth asking about.

Good luck,
Amee

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/17/2009 1:16 PM (GMT -7)   
All good news, Amee!  Thanks for the update!
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 9/17/2009 4:20 PM (GMT -7)   
She's awake!!!! She's speaking, she is aware of what has happened, she's already yelled at one of her sons... :-) about being there too long...lol She's saying that she's ready to be out of the ICU. She will probably get up for her first walk tomorrow. She's still in a lot of pain, but she say's she feels better than she thought she would.

This has been so surreal for us. We are so greatful andhope that all of the stories could end this well. God bless you all who are in this battle... never give up... it's never easy.. but it's worth it all.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/17/2009 5:27 PM (GMT -7)   
smilewinkgrin That's great new Amee. So glad that she's turned around. 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.


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 9/17/2009 6:34 PM (GMT -7)   
Thank you GREATLY Pink Grandma!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/17/2009 7:28 PM (GMT -7)   

WONDERFUL news, Amee!!  :-)    Continued thoughts and prayers for 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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/18/2009 9:17 AM (GMT -7)   
Amee how is she doing today? Praying that she continuing to improve. 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.


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 9/18/2009 10:09 AM (GMT -7)   
Pink Grandma... well she was a bit unhappy with one of her sons last night... as he just doesn't know when to shut up. He stresses her out and always has. So it was comical but at the same time... I do hope he can start to understand why he shouldn't be like that with her, certianly not now anyway.

So far so good. She's not the happiest person at the moment, but that is mostly because of the pain. She is still looking better and better. I plan on going for a visit later this evening. She should rest as much as she can. They have not gotten her up to walk just yet.

All in all we are still thrilled.

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 9/18/2009 7:28 PM (GMT -7)   
Amee  I am so excited for you.  You are right at this point I was so grateful.  I don't think I was all that scared.  Expecially while they are in ICU.  They take such good care of the patient.  about this point Jerry got really antcy (as he called it).  He could not stop wiggling and thrashing about.  I felt bad for him.  They said it was the prednisone.  I remember when I left him that night in ICU they had to restrain him.  He told me he still remembers it.  Poor guy.  I would have stayed with him if I could but they didn't allow it in ICU.  I will pray for your MIL
 
Get your rest
JoAnn

AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 9/18/2009 8:17 PM (GMT -7)   
We got a call tonight from the hospital. They have had to put her back on the vent as she was having trouble breathing. They have also put her in soft restraints, as she was scared from having trouble breathing and could have made the situation worse. They are concerned about a few of the recent lab results as it seems the liver is donig a good job but they are concerned that her kidneys are not functioning as well as they would like. She has been sedaited again as well. And she now has a central line.

I also found out why they use propafol... because as soon as they stop the medication the patients wake up very quickly. Comparied to Versed or other sedaitives. ;)


We will be at the hospital early in the morning in hopes to see the doctors as they round.

A few steps backward are to be expected and we are not going to let it get us down.

JoAnn thank you very much... so true the ICU team are just angels dressed in Nursing uniforms. They are wonderful!!!


Connie.... I also found out some news regarding on of my brother in laws. He just found out that he has Hep C. I don't know a lot about this but I know that you do. Could you enlighten me a bit more.

I can tell you that he was an IV drug user for several years, but has also been clean for at least 3 years now. I know he's concerned and I know that the doctors have started him on medications, but not sure yet what they are. I told him about this site and I hope taht he will look into it. I am sending him the link via email tonight too. Just incase he is interested.

Thank you as always,
Amee

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/18/2009 8:46 PM (GMT -7)   

Amee, setbacks are to be expected.  I've had Versed several times and it is considered "consious sedation" as the patient is able to respond, and you do come out of it very quickly.  It's probably not deep enough sedation for what they need.

As for your BIL, let him know that there is treatment for hep C if he is interested.  You might also want to give him the URL of this site:  www.hepatitiscentral.com  There's much more information there on all forms of hep than here.  They have been around for many years.  Also stress to him not to drink alcohol at all...and of course, the same goes for drugs.  I hope he has good luck with treatment!

Hugs,

Connie


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


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/18/2009 9:16 PM (GMT -7)   
Amee....continuing to pray for you guys. I am hoping your MIL can take a few steps forward over the next several days. Easy, small steps forward. You mentioned an experimental drug they are using for her anti-rejection, and I recall that when we were going through all our transplant evaluation stuff for my husband, they did mention to us that since our particular hospital participates in research of new drugs, we may possibly be approached for an experimental drug after transplant. I know some patients have a hard time tolerating some of those meds, so that may be what they are trying to accomplish.

You take care of you....you need to rest and take care of that little one, too!!

Prayers for continued recovery

Mer

AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 9/18/2009 9:51 PM (GMT -7)   
Mer,

They will not start her on the new medications until one month post transplant.

Thanks we (belly baby and I are doing well) Just a bit tired and living off of being happy! LOL

Connie... I did give him the URL and I do hope that he reaches out to the site. This site has been instrumental in helping me understand so much about the liver... You all are angels to me.

Thank you all for what you do!

Amee

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/19/2009 11:19 AM (GMT -7)   

Amee, you can also give him my e-mail addy (in my profile), if you like.  I'd be glad to try to answer any questions he has.  It would be great if he would come here, too.  Of course, all you can do is suggest to him--the action has to come from him.

Have a good Sat. and get some rest!

Hugs,

Connie


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

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