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False Alarm -- Connie's Back HOME

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Posted 10/4/2011 9:43 PM (GMT 0)
The docs at MAYO FL have determined Connie won't have her transplant today.

She gave me a quick call and will explain the details to all later.

She has some congestion and they don't want to take any chances with infection.

Changing prayer:  May she return to good health and get her turn soon.  

Mama Lama

 

Posted 10/4/2011 10:27 PM (GMT 0)
That's exactly right.  I got the call around 10:30 AM (hadn't gone to sleep until after 4 AM) and was in a dead sleep.  They wanted me there in an hour.  I had to pack a bag and make some calls, trying to notify caregivers and daughter and also looking for a ride to Mayo.  However, I knew I'd been congested for 2 days and it was just like the time I had it in July.  I didn't expect they would go through with the transplant.  When I was in the ER at Registration, I told the gal that somebody needed to check my lungs before we went any further.  Two transplant doctors (one of whom I met in '06) saw me, listened to my lungs, and decided against transplant right now.  They also wanted me to go to the TP Center and pick up an appt. to have a chest x-ray immediately, which I did.  They also wanted me on Levaquin for 7 days.  I waited 3 hours and my TP coordinator never did get the results of my chest x-ray, but gave me the Rx.  I've already gotten the Rx filled.  A different neighbor picked me up and got me home, after which he picked up my prescription for me.

Meanwhile, they have inactivated me until I get over this lung problem...for which I'm really glad.  I have things I need to do that I've been putting off, so now I can get organized and be better prepared the next time I get a call.

I hope someone was able to get the liver that was originally earmarked for me.

Thanks to all for the good wishes and prayers.

Hugs,

Connie

Posted 10/4/2011 11:20 PM (GMT 0)
shakehead Darn..........I was sure hoping it was a go. But at least you know that once you are over your congestion and they reactivate you that you are #1 on the list. Get better soon...........Thoughts and Prayers.....

PS. Send me the phone number to the hospital so that once you do get transplanted I can call and check on you.
Posted 10/4/2011 11:32 PM (GMT 0)

Will do, PG!  But right now, I need a nap.

Hugs,

Connie

Posted 10/5/2011 12:05 AM (GMT 0)
Connie, I am so sorry it was a no-go! But, it's best that they did not, given your congestion issues, etc. Yes, they will definitely want that cleared up!

You rest, get better so you can get reactivated and know you are close!!!

Praying for you!
Mer
Posted 10/5/2011 1:26 AM (GMT 0)
Mer, I was absolutely blindsided by the call.  I thought it would be in Nov. or Dec.  So yes, now I know that it will likely be sooner!  ML/Carol said the cancer has probably pushed me to the top, and I believe she's right.  My MELD is only a 22.

Hugs,

Connie

Posted 10/5/2011 2:18 AM (GMT 0)
Connie,

That makes sense that you are at the top. I hope you feel better quickly!! You rest and take care of you!

Mer
Posted 10/5/2011 2:38 AM (GMT 0)
Connie-rest up and get all those ducks in a row! That call will be coming soon! I think you should put up some of that yummy ratatouille you posted about a while back...so it's waiting for you when you return home with that new liver! I will be praying that your lung issues resolve quickly and that the 2nd call comes soon. Big hugs for you.
Emma
Posted 10/5/2011 4:01 AM (GMT 0)

Emma, I've already made the ratatouille and have several containers of it in the freezer.  Since we're headed into cooler weather, I think I will also make some 3-Bean Chili and freeze that, also.  I make a large batch and then freeze in small containers.  I don't imagine my caregiver will want to do much cooking.  I already have individual baggies of skinless chicken breast and turkey burgers in the freezer.

Hugs,

Connie

Posted 10/5/2011 2:13 PM (GMT 0)
Hey Connie!

I hope the congestion clears up quick.  Sounds like you need to be prepared like when in labor...bag by the door, ready to go! yeah At least this wil get you jumped started to finish getting things organized and taken care of knowing they can call you in a minute!

Conference ends on Thursday, so I'll be back more often after that.

Take care!

Posted 10/5/2011 3:02 PM (GMT 0)
Connie,
I was sad to hear about the false alarm . . Get Well Soon, and get that Liver!!

CONNIE, COME ON DOWN TO MAYO!!YOU ARE THE NEXT RECIPIENT OF A NEW LIVER!! (I misss Bob Barker on that show!!)

Good luck!!Hope you get it soon!!


Debbie
Posted 10/5/2011 6:07 PM (GMT 0)
Thanks, guys. I'm actually relieved to have a little breather until being called again. My TP Coordinator said I could "rest easy" for the next 7 days, as they won't be calling me. My TPC also said she would call with results of my x-ray, but no word yet.

Yesterday in the ER, before my lungs had been checked, I overheard a nurse saying the were being slammed with transplant patients and didn't even know where they could put me after surgery. I tend to forget that they also do kidney, heart, and lung transplants, as well as liver.

Hugs,
Connie
Posted 10/5/2011 6:27 PM (GMT 0)
Also remember, when they harvest from a donor, they try to use all the organs, so if they get a good one, it generates its own mini rush!!!!  The liver, kidneys and lungs were all in a row in the ICU and no one really talked about it....but you know it is true.
Posted 10/5/2011 6:45 PM (GMT 0)
connie, wow,,,, not long now!!! i think its great that you had a mini practice run for the real thing, now ou can get that chest cleared up and get all organised for the real thing,,, wishing you the smootheat transplant and recovery EVER!!!! get through this last hurdle connie and you are on that road to a long healthier life! woo hoo!!!!!!!!!
thinking of you often.
thoughts and prayers.
xxnatasha.xx
Posted 10/5/2011 7:30 PM (GMT 0)
ML, that's true. I am really hoping that some deserving soul was able to get the liver I had to pass on. What about corneal transplants? I imagine those are handled differently, i.e., not on a transplant floor.

Natasha, you are the sweetest. How are things going this week?

Hugs,
Connie
Posted 10/5/2011 8:40 PM (GMT 0)
At MGH livers, pancreas and kidney transplants are separate from other organs. Heart and lungs have their own place and bone marrow is in another spot.
Posted 10/5/2011 8:44 PM (GMT 0)
Connie lots of times they call people for a back up ....incase the person the liver is intended for doesn't pass there pre op for surgery .....hope u get well soon ....your soo close
Posted 10/5/2011 10:03 PM (GMT 0)
At Miami they were all together. Though I think the rich folks were in ICU A and the poor folks in ICU B! Maybe I'm wrong, but judging by the folks, I'd say I'm right. ON the transplant floor there are singles and doubles...and I think that is the same. Doubles are fine for us.
Posted 10/5/2011 10:57 PM (GMT 0)
i want to be notified to when you go. im sorry been away awhile connie. if i h ave your number when you finally get it i will check up on you too
Posted 10/6/2011 12:02 AM (GMT 0)
ML will probably post when I go in for transplant. Someone will call her when I have transplant...after the initial couple of days when we know more if there will be complications or not. She will keep everyone on here updated. I hope you understand that I have a lot of family members and close friends who will need to be called, so I won't be able to have everyone called who would like to be. My primary and secondary caregivers will be handling the calls.

Hugs,
Connie
Posted 10/6/2011 12:10 AM (GMT 0)
ML,
After my transplant I was in a single room. The other two times, in with another. Both times in a double, I had a guy that wrapped himself in his blanket and moaned 24/7 and the other one had a couple of girlfriends he was trying to keep away from one another. He spent most of the day talking to them and telling them the same lines about how they "were the only women he'd ever love." I could practically do his routine by heart.
Posted 10/6/2011 12:40 AM (GMT 0)
Well David roomy with don Juan ..had to be better then the moaner ...lol .....we been really lucky to get private room ....one time he shared a room for a few days with a older man him and his wife were quite and nice ..guess we got lucky .....the icu and transplant stepdown unit rooms are large with a bench bed by window and recliner and nice bath ..that part of hospital is new and nice ..other floors are small ...not so comfy
Posted 10/7/2011 2:50 PM (GMT 0)
David,

      That is one of the down sides of MGH that there are 2 patients to a room. The upside is that they are one of the top 5 hospital and that includes doctors in the world there. I recently stayed at the Leahy Clinic in Burlinton, MA. just a little more than 24 hours and had my own private room. Getting a nurse when I needed one was poor and I really did not think that they treated me that well there. It was like the nurses had no compassion and were there just for a paycheck. The male nurse that walked me out said what did you come here for, " This place stinks". I was that sick that I had to go to the closest ER. BostonMike

Posted 10/8/2011 1:34 AM (GMT 0)
Hi Mike,
MGH has both single and double rooms. Mostly doubles.
They're changing the whole transplant unit around in the near future.

By the way, they continued my interferon/ribavirin for the near future as I still show no viral load and they'd like me to show negative for several more months.
Posted 10/10/2011 11:38 PM (GMT 0)
Hi Connie,

I'm sorry to hear about the disappointment. Now it's your job to get better. We will continue to pray for you. Hopefully you'll be put back on the list in 7-10 days.

Pam and Ron
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