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Posted 1/15/2009 6:02 PM (GMT 0)
HI to all,

Well, I guess you all realize that once the transplant takes place... the lifestyle changes. If you didn't ~ I am here to tell you that it DOES.
Things ~ after several months ~ actually start to get normal again. You find yourself returning to the things you used to do. Like work, shop, see friends and basically become normal. You also find that the 'life line' you used to have with this forum is not uppermost on your mind. I was going to apologize for that, but I really do believe that is natural.
(I used to go to sleep at night after having read the latest post on this forum and then post something first thing the next morning.)
Now, I go to sleep pretty peacefully after having watched my husband get better and better and better every day.

~He was admitted back into the hospital on Dec 29th for rejection issues. But, after a biopsy and an ultrasound and a meeting with the transplant team, it was determined that his meds needed adjusting. (Which did not surprise me). He started out with 12 Prograf a day and was down to 1 Prograf a day. Hmmmm? Seemed a little extreme to even me!

We are good. He is good. I love him again. (Some of you will remember that I was just ready to strangle him some days. ESPECIALLY when he first came home and was on the steroids!!!! OMG that was horrible)
But, we are good.

We had all the best hopes for 2009 until we got the phone call on NYE that my mother had a massive heart attack (actually two) and was going to die. She did, in fact, die on 1/2/09.
So, our hopes for a "bright new year" were dashed.

Sad, sad, sad. So sad that we've decided to celebrate our NYE on January 31st. New Year's Day will be Feb 1 in our house. We're going to try it again.

So all of you reading this... please understand. You will get your life back to normal. You just have to sink to the bottom first.

The new liver is the key. Get to that point.... hold on tight... and then wait and watch. It'll happen.

God Bless you all.

I'll try to randomly check in when I think of it. Remember me and hubby and remember that there is light at the end of the long dark tunnel.
Posted 1/15/2009 7:33 PM (GMT 0)
Congratulations La Bunna. You're post is very encouraging as my husband was just listed on the transplant list. He was diagnosed with PSC 14 years ago and I live for the day he can feel "NORMAL" again.

God bless you both.

Penny
Posted 1/15/2009 7:39 PM (GMT 0)
You are 'almost there'. Just hang on as tight as you can.... it's true about "it is always darkest before the dawn".
He'll be as sick as you can be until they give him a liver.
BUT THEY WILL GIVE HIM A LIVER!

It really really really happens!

Good luck!
Posted 1/15/2009 10:54 PM (GMT 0)

LaBunna, it is so good to hear from you.  I remember your struggles well.  Please accept my sincere condolences on the loss of your mother.

I'm so glad that your hubby is doing well.  So he no longer has to take steroids?  I was under the impression that a transplant patient (any type of transplant) remained on them for life.  That would present a problem for me, as I have a really bad reaction to steroids.  Right now, I'm stable.  However, I have been told that if the cancer returns in my remaining left lobe, I would then need a transplant.

Your post is going to bring hope to so many.  We don't hear back too often from those who have already gotten transplants.  I think it's good for those going through the dark times now to know that there is hope for a new life.

You take care of yourself and don't be a stranger!

Hugs,


Posted 1/16/2009 12:11 AM (GMT 0)

Steriods were very short term.... but horrible. 

I couldn't live here if he were on them long term.  They alter a person's personality to the WORST!

Posted 1/16/2009 2:48 AM (GMT 0)
La Bunna, I am so glad to hear from you. Thanks for updating us and giving us all so much encouragement. I am glad that your husband is doing well. I am sorry for the loss of your mother. I lost mine 14 years ago and still miss her terribly. I continue to pray for you.
Posted 1/16/2009 11:47 AM (GMT 0)
La Bunna

So glad to hear from you and thanks for your update. It gives me hope that maybe one day my life will be back to "normal". I am not sure I even know what that means anymore. I am so happy for you and your hubby.

I am sorry to hear about the loss of your mother. I too lost my mom right before Christmas eight years ago and I truly still miss her everyday. It does make the holidays harder with a loss. Glad you are issueing your own New Years.

Thanks again for your encouraging post.

Lucy
Posted 1/16/2009 11:52 PM (GMT 0)

LaBunna, sooooooo good to hear from you and thanks for giving us such encouragement turn , going through this is the most difficult thing I have ever been through and you tell it like it is!  My condolences to you for the loss of your mother.

 

 

Judith

Posted 1/17/2009 1:24 AM (GMT 0)

Thank you both,

Judith and Lucy

It has been weird.............

Posted 1/17/2009 1:37 AM (GMT 0)

Thanks for addressing the steroids, LaBunna.  I only took prednisone once and had a psychotic reaction to it (hallucinations--both visual and auditory; couldn't sleep for days; felt like their were bugs biting me under my skin) and had to go to the ER.  They gave me Thorazine for a week to "bring me down" from the pred.  It was like a bad drug trip.  I haven't had good experiences with other steroids, either...usually bleeding.

Thanks again for letting us know what is "on the other side!"

Posted 1/17/2009 2:04 AM (GMT 0)
As stated before; God Bless You All !
You will get there. It just takes an unbelievable amount of sickness and suffering.
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