We got "THE CALL"

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La Bunna
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Date Joined Jul 2008
Total Posts : 100
   Posted 7/21/2008 10:28 AM (GMT -7)   
 
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? 
La Bunna
 
"Courage is the art of being the only one who knows you are scared to death"


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/21/2008 11:01 AM (GMT -7)   

La Bunna, I am so sorry this happened to you guys!  They had this exact situation on Hopkins last week, only it was a heart.  So it does happen.  It's disappointing, but also comforting to know that they won't put anything substandard in your hubby's body.  Next time around, I wouldn't call any family members/friends until he is at least in surgery, or better yet--after the liver is in--except for someone you may want to wait with you.

This is actually good news.  It means he is up at the top of the list, and you could get another call today or tomorrow.  That's what happened on Hopkins.  The family had not even gotten back home yet, when the hospital called and told them to come back.  The second organ was fine and the transplant a success.

Big hugs to you,

Connie


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/21/2008 11:22 AM (GMT -7)   
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.
 
La Bunna
 
"Courage is the art of being the only one who knows you are scared to death"


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 7/21/2008 11:27 AM (GMT -7)   

La Bunna, you guys hang in there!  It will happen--and soon!

Hugs,

Connie


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/21/2008 1:07 PM (GMT -7)   
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
Moderator of the Cystic Fibrosis Forums
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Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 7/21/2008 6:19 PM (GMT -7)   
Hello La Bunna, I know it is just such a let down but Connie is right. He's at the top of the list and they will be calling him again soon.

Lot's of thoughts and prayers going your way.......
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.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/21/2008 7:33 PM (GMT -7)   

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


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/21/2008 8:36 PM (GMT -7)   

JoAnn, it's interesting about being O positive.  I am, too, so I guess if I ever need a transplant, I'd have a wait, too.

Connie


okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 7/21/2008 8:52 PM (GMT -7)   

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


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 7/22/2008 3:30 AM (GMT -7)   
LaBunna

I am so sorry that you all had to endure this let down, but as everyone here has said this means he is at the top of the list and they are activlely pursueing getting a match for him. Don't give up and hang in there.

Lucy

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/22/2008 12:48 PM (GMT -7)   

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


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/22/2008 3:51 PM (GMT -7)   
LaBunna, I'm sorry that you had to go through all of that, but like the others have already said you will get the call again.

Hang in there. My prayers are still with you.
Butterflythree
 
There is always hope!


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/22/2008 4:58 PM (GMT -7)   
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,
La Bunna
 
"Courage is the art of being the only one who knows you are scared to death"


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/22/2008 5:07 PM (GMT -7)   

La Bunna, thanks for checking in!  You know we are all hoping and praying for you, and I personally have crossed everything I possibly can.  You WILL get that call again soon!  (The Power of Positive Thinking.)

Hugs,

Connie


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/22/2008 5:18 PM (GMT -7)   
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.
 
 
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 7/22/2008 6:12 PM (GMT -7)   
LaBunna
 
Thats interesting!  The way I see it they got a slow start for 2008.  That mean they will do probably 60 more liver transplants this year.  With only 5 months left that is 12 a month which is 3 a week.  I'd say you will be heading back to the hospital real soon.  Really, I'm just trying to be positive.  They told us at Vanderbilt they average about 65 liver transplants a year.  The week prior to our last visit they did 6 in one week.  So it is hot and cold.  I would say you and your hubbie will be heading back to that hospital soon.  Its good that you are working.  It's good therapy for the mind.  I would like to say I wish I was working but one of my dearest friends told me once be careful what you wish for.  I seriously doubt I could hold down a job.  So you are in better shape then you thought.  Hang in there. I sure don't know where all my positive energy is coming from.  If I was in your shoes I would have to be put on some strong medication.  I guess this is my therapy for the mind!
 
JoAnn

Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 7/22/2008 6:23 PM (GMT -7)   
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.
Butterflythree
 
There is always hope!


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/23/2008 4:49 AM (GMT -7)   
Here is a good description of me "working":
 
1.  get in car and tell myself over and over "drive and pay attention.  drive and pay attention"
2.  meet with client and tell myself over and over "pretend you are listening.  pretend you are listening"
3.  TAKE NOTES
4.  get back in care and tell myself over and over "drive and pay attention"
5.  get myself back home to hubbie as fast as legally possible without having an accident and thus causing us another problem
 
All I am doing right now is maintaining my business.  I hope to have it when this is all over.  Some of my better clients know what is going on and are supportive (for now.  who knows how long they can keep that up.  after all business is business)
 
I wish I weren't working. 
But I really hate to give up everything I've built up over the years.  I have my own business and I am the sole 'employee' and if I don't keep it up, nobody else will.
 
Luckily, I spend most of the time at my office at home!
 
also,
I have to go back to UNOS.org and look at these stats again for 2008.  I may have misunderstood the chart?  I'm still befuddled by 12 for 2008 and 72 for 2007.  I can misunderstand ANYTHING right now!!!
La Bunna
 
"Courage is the art of being the only one who knows you are scared to death"


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/23/2008 4:57 AM (GMT -7)   
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!
 
 
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 7/23/2008 8:04 AM (GMT -7)   

YEA!  I went back and read my explanation to you about there being such a low number.  Sometimes I have no idea why my brain works the way it does.  I'm just glad all is well!  I loved your decription of working.  That is exactly what I do from day to day.  Just going from room to room.  I sure hope our minds get back to normal (whatever that might be) when our hubbies have their new livers!  One positive occurrence for you Today.  Keep trying to do some work.  Its good for you.  If you're afraid of your driving (I have reached destinations and not remembered driving there) call a cab!  Hey, maybe I will have one positive occurence today!  YEA, I'm already excited.

JoAnn


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/24/2008 5:31 AM (GMT -7)   
FYI
 
No second call.
 
Just checking in.
La Bunna
 
"Courage is the art of being the only one who knows you are scared to death"


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/24/2008 7:08 AM (GMT -7)   

Hey, LaBunna!  I have been in your position and know how very difficult it is to even "maintain" when you are under so much stress.  Here's hoping it won't be much longer!  Keep trying to "turn it over" to your Higher Power, re: the transplant, whenever you find your mind drifting to that.  It is not in your control.  Your business is.

I'm pleased to read the new stats.  Much more encouraging, for sure!  I will rev up the positive energy for you a notch.  It can't hurt.  ;)

Hugs,

Connie


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 7/24/2008 4:30 PM (GMT -7)   
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.
La Bunna
 
"Courage is the art of being the only one who knows you are scared to death"


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/24/2008 6:21 PM (GMT -7)   

Well, that's so obvious it makes me feel rather stupid for not thinking about it that way.  However, I would still be encouraged that he is somewhere near the top.  :-)

Hugs,

Connie


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 7/24/2008 6:42 PM (GMT -7)   
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
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