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Linda325
Regular Member


Date Joined Mar 2010
Total Posts : 80
   Posted 6/18/2010 12:08 PM (GMT -7)   
Just got back from the hospital with hubby and we had two days of good news.  First, the CT scan showed NO MORE TUMORS.  The third tumor that was being stubborn from the first chemoembolization was successfully treated on the second try and is gone.  The doctor is pretty sure they will come back and wants to get that liver out as soon as possible. 
 
Today completed the rest of his transplant evaluation testing with a colonoscopy ond EGD.  They also did banding of varices.  He hadn't had any bleeding but they did it as a precaution based on what they found in the tests.  The doctor said they will check the banding in a month IF HE DOESN'T HAVE A NEW LIVER BY THEN.  Everyone thinks he won't wait long as soon as he's listed.  It would be awesome if he got a new liver right away and started feeling better.  He's still very tired and not feeling well.  I know the last time he was on the Interferon combo, it took at least a month after it was stopped for him to get some strength back.  He's only been off of it two weeks.   
 
So this week we are at the top of the roller coaster and I'm not going to worry about anything else right now.  I'm going to catch up on some work and bank some cash for the weeks ahead when I'll be home taking care of him.  I'll post if I get any news.  Thanks to all for the support and prayers.
 
Sincerely, Linda

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/18/2010 1:32 PM (GMT -7)   

Yippppeeee!  Linda, that is FANTASTIC news!  yeah     yeah    yeah    We so seldom get good news here that it's a real cause for celebration.  Enjoy this victory and relax a little now that his transplant eval. is complete.

Hugs,

Connie


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


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/18/2010 1:46 PM (GMT -7)   
Linda, I know here liver cancer patients if an operation is possible move up the list quickly. One of Dougs friends in his group got his fast as MELD became secondary.... cancer has a different priority.
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 6/18/2010 4:27 PM (GMT -7)   
Hi Linda, What fantastic news! I was hoping things would go well. What is his MELD score? I realize that cancer moves one up the list, but it doesn't hurt if the score is up. When I stopped the interferon/ribavirin therapy, I didn't feel completely back to normal, until 3 months out. Your mileage may vary. **David**
"No good deed goes unpunished."


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/18/2010 5:14 PM (GMT -7)   
Yippeee !!!!!!! Excellent news Linda!

Stay on tops of things now for sure Linda. Don't let them sit on their laurels. Make sure any testing or procedures are done when his transplant doctor say they should be done again. Like if they say during an appointment, they want a CT done again in 3 months.....remind them at month 2 and make them set up the appointment. Things like that got over-looked with my husband. I had to tell his PCP "Isn't time for my husband's MRI or what ever it was. Even though my husband was seeing one doctor or another each month.........things didn't get communicated to each other very well.

tongue turn wink thoughts and 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.


Linda325
Regular Member


Date Joined Mar 2010
Total Posts : 80
   Posted 6/18/2010 7:37 PM (GMT -7)   
Thanks everyone! His MELD score without the cancer is only a 10 but the cancer bumps it up to 22 or 23. The interventional radiologist is afraid the cancer will come back quickly and is hoping for things to move along fast. PG, I've aleady had to insist on getting a few things done and my official title is his "transplant support person". When they ask who I am, that is the title I use when dealing with people who don't see what the hurry is in getting things done in a timely fashion and it works better than "wife". I HAVE to be his advocate because his LIFE depends on it. I had a little problem in getting his colonoscopy scheduled because two centers kept passing the buck as to who was responsible for getting his appointment scheduled. Sometimes, after being nice doesn't work, you just have to insist they listen to you. Sometimes it's a little scary to think that the place who can't get his appointment right or know which doctor he's supposed to see is going to remove a major organ and replace it with a new one. I just keep praying that God gives us more time together.

Linda

Someone sent this quote to me today-

If God brings you to it, he'll bring you through it.

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 6/18/2010 8:05 PM (GMT -7)   
Stay with it Linda. I'm a little surprised they haven't done a colonoscopy much earlier. How about an endoscopy? They did both at same time with me. Another "title" that might carry weight with some people is "medical proxy." Never give up. I found yelling doesn't work, but being firm, concise and courteous did. And persistent. Be well. **David**
"No good deed goes unpunished."


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 6/18/2010 8:47 PM (GMT -7)   
Linda....I love the title!! Because, you are right, being the wife, caregiver just does not get us very far sometimes! Praying that you get that call very quickly telling you to bring him in, they have a liver for you! My husband's MELD is only 7 or 8 but he cannot do interfuron due to some major side effects he had with it. So, we are in that "holding pattern".

Praying for you guys....take care!!

Mer

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 6/18/2010 9:38 PM (GMT -7)   
:) Good news!!! Praying!!
There is no pit so deep that He is not deeper still... Corrie Ten Boom


CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 6/19/2010 12:33 PM (GMT -7)   
Prayers ascend Linda ... I know how frustrating it is as a CareGiver to worry about the reliablilty of the Transplant Team, but the reality (or at least mine) is that they typically have a good focus on the situation, they just don't communicate well.

God bless,

Rob
~~~
Please! Don't take your organs to heaven ...
Heaven knows we need them here!
Be an organ donor and restore up to 8 lives.
www.organdonor.gov
~~~
Please visit my blog with reflections, meditations, and prayers on life and nature:
www.rob-wanderingthoughts.blogspot.com
~~~


Linda325
Regular Member


Date Joined Mar 2010
Total Posts : 80
   Posted 6/25/2010 4:10 PM (GMT -7)   
More good news- It looks like he's been approved for transplant but we have to go down next week Thursday to sign some papers and he needs one more blood test. They didn't say what this test is for. I think it might be another tissue type test. So maybe next week he might be officially listed for transplant! Please keep him in your prayers.

Thank you,
Linda

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 6/25/2010 4:29 PM (GMT -7)   
Good luck, Linda. When you're on the list, there will be tests ad nauseum. At MGH, I had quarterly blood work when my MELD score was below 18. Over 18 and it was monthly, and over 28 weekly. What blood type is he?
"No good deed goes unpunished."


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/25/2010 4:52 PM (GMT -7)   

That's good news, Linda!  Progress!

Hugs,

Connie


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


Linda325
Regular Member


Date Joined Mar 2010
Total Posts : 80
   Posted 6/26/2010 8:15 AM (GMT -7)   
Thank you! He's O+ blood type. Gregg Allman of the Allman Brothers band just got a new liver on Wednesday in Jacksonville, Fl. They said he had waited four months and that was about double the wait time for the area. I don't know if there is more donor education in Florida or if it's just the horrible traffic but Florida seems to get organs quickly. Hubby went golfing today so he's feeling a little better since he's off the Interferon. When he's too weak to golf, I REALLY worry! Please keep the prayers coming and I'll post on Thursday when I find out what's going on.

Thanks again,
Linda

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/26/2010 8:30 AM (GMT -7)   

Linda, The southern area of UNOS does have a shorter wait time for an organ, I met someone in a group meeting that moved to Florida and got listed down there on Drs recomendation as they saod he wouldnt survive on the list in NE. They were down there for a total of 14 months including recovery time.

Sue


Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 6/26/2010 9:28 AM (GMT -7)   
Florida doesn't require motorcycle drivers to wear a helmet, resulting in quite a few brain dead, but otherwise healthy bodies. Plus, they tend to be young. Also, when I spoke to the transplant people at Mayo, they said a MELD score of 20 could get me a liver. At Mass General, I was told that most of the time, it took a score of 25-30. I was lucky and got one at 24. Part of the reason was that my blood type is B+. The more common your blood type is, the more people are competing for a donor liver. In my case, a number of factors came into play, my size, blood type and score.
"No good deed goes unpunished."


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/26/2010 11:10 AM (GMT -7)   
Mayo generally has a very short wait time for a liver, around a month or so after being listed. Part of the reason for this is that they will use less than optimal livers. For example, a hep C donor liver may be transplanted into a hep C positive recipient. But yes, tons of vehicular accidents here, too.

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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