We got "THE CALL"

 

Yesterday evening - it was Sunday at 5:30 - I got the call from the Rush transplant coordinator telling me they had a donor and I should bring hubbie down to the emergency room ASAP.

 

Friends, I cannot tell you how excited we were!  We were absolutely delirious!!!  We packed, we called our dog sitter to come over, we threw everything in the car and as I drove, I called all our family and friends to make the HUGE annoucement!  Everyone was elated!!!!!!

 

Guess what happened then? 

I called the transplant coordinator to tell her we were "almost there" and she told me , "oh I'm so glad you called.  The liver was accessed and found to be unacceptable",  " You can go home."

 

Bomb.  Devastation.  Absolute dispair. 

 

I turned the car around and we drove home in silence.  THEN- we had to call everybody back and tell them this horrible change in our situation.  It was AWFUL.

 

I am still screwed up over it this morning.  I am so angry.  I am so in disbelief.  I cannot describe it.  I have this sickening feeling that they will never call again.  "We had one chance and it was taken away".  This is the way my screwed up mind plays evil games with me, as it LOVES to do.  But, gosh, this was BAD.

 

Has anyone else ever gone thru this? 

Thanks so much for your reply.

 

I really really really needed to hear that.

 

It's just so hard to 'keep your head up and keep your heart up' when we feel so beat.

 

Thanks again.  I'm going to go tell hubbie about your post.

 

I just saw your post.

I have had many friends on the list for transplant. The good news is, this year there has been 2 people who have finally got there liver transplants after many false alarms. I've had 2 friends who have had double lung transplant, one of them over a year 'old' now, and doing excellant, the other is 1 year in December-just before xmas. Both of them had many many false alarms.

I've never ben on the list myself, but can imagine how frightening it must be. False alarms must be so downheartening. Keep on going and hoping though. My friend runs a UK registered charity now, and if you would like too get in touch with others who have had there transplants or on the list still waiting for that call like yourself-please let me know via email.

hep is right-it will be the right call soon. Usually once you've had one false call you'll get a few more, as you're near to the top of the list, then it will be the right and best one for you. This is how I see it anyhow.

Hugs,
Gem

LaBunna,  I just can not believe that happened to you.  Did you know you were even at the TOP of the list?  I actually read that it does happen a lot.  It was in some of the books they gave us at Vanderbilt.  Also on the positive side.  I have read where many people at the top of the list are in the hospital being kept alive until they receive a liver.  Sometimes are within hours of dying.  I know its hard to hear but I go along with Pink Grandma.  You will get another chance since your hubbie is still able to be home.  One thing that might make you feel better.  Check the numbers on how many liver transplants are done at your hospital.  That will give you an idea how many livers are transplanted per week.  Also check the odds on his blood type.  Jerry's blood type is O so he will have to be in the 20's before he gets to the top because A and B can both have an O.  But O can only take an O.  But on the positive there are more O's.  I'm sure I didn't make you feel much better but maybe for one minute it took your mind and body out of the panic mode.  I don't know what I'm saying to you.  I would be hysterical.  Just stay calm and keep those bags packed.  It will happen.

JoAnn

LaBunna,  My husband was one of those on life support waiting on a liver to come in and he did get a liver within hrs of dying, but he DID get the liver.  I'm sorry the liver wasn't OK, but it's so good that they do all the testing.  We had a lady called in while we were there and they had her almost prepped for surgery and called it off because the liver had Hep B in it.  I think I was more upset than they were.  We saw them a couple months later and she had got the transplant and was doing so much better than my husband was.  Don't lose hope, you may get a call anytime, just keep you a bag packed.  Good luck.

Helen

LaBunna

I want you out of your slump right now!  We all need to hear from you to make sure you are OK.  Your hubbie needs you to keep him UP.  Just reach down inside yourself and get going.  After this is over he will make it all up to you by just being alive.  And, maybe a new car or a trip around the world.   One you can take your dogs on!  Write and let us know how your doing.  Did you do the research on Transplants done at your hospital?  Keep us posted.  Everyone is praying for you and hubbie.

JoAnn

Hi to all of you wonderful people.

 

I'm sorry, I had to work (and for me that means getting in my car and driving all around Chicagoland - I go to them, they can't bring their spaces to me!) so I have'nt emailed or even checked our forum.

I / we are doing better.  The disappointment of Sunday night - and then I carried it over into a HORRIBLE Monday - is subsiding.

 

Joann - I just read what you said about checking the hospital for the number of transplants they do - am going to do that next.

 

I just wanted to let you all know that I have NOT jumped off a bridge.  (Hubbie is in a daze, as always, he did not take it as hard as I did).  I am starting to cope again.  And have hope again. 

 

And I AM packed and ready.  So is hubbie.

 

Please, God, just let them call again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

 

Thanks and lots of love to you all.  I am off to check the number of transplants done at this hospital.  (Rush University Hosptial.  Used to be Rush St. Lukes.)

 

XXXXXXing fingers and praying hard,

I just checked the UNOS.org website for Rush's transplant record.

 

72 liver transplants in 2007.

 

12 liver transplants in 2008.

 

Jeez... we are more than 1/2 thru 2008.  I wonder why the big drop?  I sure wanted to see more than 12.

 

 

LaBunna, I'm glad that you are feeling better today and thinking more positively. I know that can be hard at times. Especially for what you have been going through. Hope is all we have to hang onto.

AHA!

 

The stats for liver transplants were only until April 30, 2008!

 

Now I am feeling better about this.  We are 90 days past that and all those days are as yet unrecorded!

 

 

FYI

 

No second call.

 

Just checking in.

I had an interesting thought pointed out to me today.

 

Even if hubby was 'at the top of the list' on Sunday...The List isn't static.  It's fluid.

 

Every hour of every day, somebody probably gets to be the 'sickest' and is in line for the next liver.

 

But, when somebody gets sicker, it also pushes the person who used to be at the top of the list, down a notch or two.

 

I never thought of it that way.  "The List" is always changing!

 

Duh.  I can be such a dumb (la) Bunna.

LaBunna

That is one of the horrible things about this disease that is probably going to cause me to totally loose my mind.  You can read and read everything you can get your hands on.  Just when you think you have it all figured out here comes that curve ball as Pink Grandma would say.  I want to call it something much worse but PG would have to edit me.  I vaguely remember thinking this through at one time.   Who can think straight in a crisis like this.  OK LaBunna here is what I think happens.  This is just my theory.  It depends on the blood type.  If number one on the list needs an O only and a B comes in they have to give it to the first person that can take a B which could be the 4th or 5th on the list.  So being at the top of the list doesn't just mean number one.  I hope you understand what I mean.  The only thing I'm confused about is we were told they can give an O donor to an A or B.  But they only do that if they have too.  I wanted to say so bad "What the hell does that mean" but at the time I had so many other questions and I think they were getting annoyed with me.  If there is anyone on this forum that can answer there are probably more then me that would like to know the answer.  LaBunna I know it seems easy for us to keep saying this but I just don't know what else to say.  HANG IN THERE.

JoAnn