1. < Transplants

It's not all about the MELD Score

Posted by amyintucson @amyintucson, May 19, 2018

There are lots of threads out there with questions and comments about MELD Scores. I just had my 1year/3 month pre-liver transplant review and my MELD is a 10. The doctors at Mayo/Phoenix emphasized that the MELD isn't everything as some people are sicker than their scores indicate. They have me on the "active" list and am in the discussion at their weekly team meetings. I have venous congestion that is of major concern because if it continues to grow it causes other operative problems. I have had esophageal varices banded - 6-8 times (no bleeding so far) - but that has precluded using a blood thinner to allow the body to dissolve the clot on its own. If my next upper endoscopy - in the next 2 weeks here in Tucson - shows no new varices we may try the blood thinner even with my low platelet counts. Though it increases the risk of bleeding, with weekly monitoring its a risk/reward decision. The bloid thinner will likely raise my INR and temporarily raise my MELD, it's worth a shot if the body breaks up the clot.

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JK | @contentandwell | Oct 8, 2018
In reply to @gaylea1 "@rosemarya @contentandwell ...so I finally got a call into the hospital as a back up recipient...." + (show)
@gaylea1

@rosemarya @contentandwell ...so I finally got a call into the hospital as a back up recipient. The intended recipient was borderline for surgery as he was quite ill. He made it through the critical part and was able to undergo surgery. I was admitted at 1:00 pm and had a chest xray an eeg or is it it ecg blood tests and IV line in. Waited 6 hours then told to go home. I guess a good experience for when my "true" call comes in but never the less disappointing. Hope next call is soon and I get the transplant.

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@gaylea1 What a mixed bag of emotions! Such disappointment, but also feeling good knowing you are so close. I never got a call prior to THE call. I don't remember a lot of testing when I got there either, maybe I had all of it just before then or, maybe it's just such a blur I don't remember.
JK

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gaylea1 | @gaylea1 | Oct 10, 2018

@contentandwell yes they are quite rigorous on your health prior to surgery. I had been pre-admitted before but went through quite a series of questions and tests yet again. When the call comes I'll have to do it all over. Only part I don't like is having blood samples taken and IV inserted as I have very small and hard to find veins. Usually takes the IV team to do this as the nurses can't find viable veins and I get "poked and jabbed" a or. Can be painful. Here's hoping for a call soon.

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1 reply
gaylea1 | @gaylea1 | Oct 10, 2018
In reply to @jeanne5009 "@gaylea1 GOSH... how incredibly exciting...kind of... I believe that there is a reason for everything. Thank..." + (show)
@jeanne5009

@gaylea1
GOSH... how incredibly exciting...kind of...
I believe that there is a reason for everything.
Thank God we have been warned of the roller coaster ride!!!
There is a plan for you and you are getting closer...be calm and have faith. You are ever so close to your new destiny.
Do you know how the gentleman is doing? He was part of the plan too!
My thoughts and prayers for you both for all good outcomes.

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@jeanne5009 thank you for your kind thoughts and prayers. Yes, I do believe that everything has a reason. I'm not sure how the other recipient fared as they don't share too much information. Obviously they needed it more them me. I'm hoping I am one step closer. Overall it was a good experience or dry run for the actual surgery.

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gaylea1 | @gaylea1 | Oct 10, 2018
In reply to @jodeej "@gaylea1 how disappointing for you, but as Rosemary said, exciting for the gentleman and his family...." + (show)
@jodeej

@gaylea1 how disappointing for you, but as Rosemary said, exciting for the gentleman and his family. If you got "the call" as the secondary, your call should be coming soon. Keep the faith.
Blessings,
JoDee

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@jodeej thank you I will be anticipating the call more than ever now. I slept ok but woke up a bit confused. I was much calmer through the whole thing than my loved ones. They were happy that I took it so well. At least I know what to expect when "my" call happens.

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gaylea1 | @gaylea1 | Oct 10, 2018
In reply to @rosemarya "I just read this! How did you sleep last night after all of that activity? I..." + (show)
@rosemarya

I just read this! How did you sleep last night after all of that activity?
I am sorry for you, but happy for the gentleman who did get to receive his transplant. I hope he does well. I can almost imagine your disappointment, yet this is what we have been prepared for. Now that you have had a practice drill, I can hope and pray along with you that your own call will be coming before too long.
My husband and I used to always worry about the phone working. At least you know that your phone connection is good and that the call can go thru.
Hugs.

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@rosemarya thanks so much. I was much cal at than I thought I would be. I am happy that the liver was transplanted to someone in dire need. I know what to expect now and am relaxed with the thought of how I will react.

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JK | @contentandwell | Oct 14, 2018
In reply to @gaylea1 "@contentandwell yes they are quite rigorous on your health prior to surgery. I had been pre-admitted..." + (show)
@gaylea1

@contentandwell yes they are quite rigorous on your health prior to surgery. I had been pre-admitted before but went through quite a series of questions and tests yet again. When the call comes I'll have to do it all over. Only part I don't like is having blood samples taken and IV inserted as I have very small and hard to find veins. Usually takes the IV team to do this as the nurses can't find viable veins and I get "poked and jabbed" a or. Can be painful. Here's hoping for a call soon.

Jump to this post

@gaylea1 I have the same problem with my veins. Thankfully I did not have problem in Boston like I do at home, except for one time prior to an endoscopy or colonoscopy. The nurse had to call in someone else and even she had a bit of a problem. Sometimes I feel like I battled a porcupine.
JK

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gaylea1 | @gaylea1 | Oct 14, 2018

@contentandwell I've had up to 5 attempts trying to draw blood. Sometimes they use my fingers or wrist. I usually end up with an IV technician. Also, when they withdraw the IV it end up spurting all over. Can't wait to get less blood tests.

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2 replies
JK | @contentandwell | Oct 14, 2018
In reply to @gaylea1 "@contentandwell I've had up to 5 attempts trying to draw blood. Sometimes they use my fingers..." + (show)
@gaylea1

@contentandwell I've had up to 5 attempts trying to draw blood. Sometimes they use my fingers or wrist. I usually end up with an IV technician. Also, when they withdraw the IV it end up spurting all over. Can't wait to get less blood tests.

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@gaylea1 I wish I had to go for fewer blood tests also, but when the regular phlebotomist is there he does a good job. When there has been a substitute there though, I have had about five attempts too. I do have one fairly decent vein but for some reason some phlebotomists still can’t manage.
JK

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2 replies
jeanne5009 | @jeanne5009 | Oct 15, 2018
In reply to @contentandwell "@gaylea1 I wish I had to go for fewer blood tests also, but when the regular..." + (show)
@contentandwell

@gaylea1 I wish I had to go for fewer blood tests also, but when the regular phlebotomist is there he does a good job. When there has been a substitute there though, I have had about five attempts too. I do have one fairly decent vein but for some reason some phlebotomists still can’t manage.
JK

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@gaylea1 @contentandwell
I have one big fat juicy vein and they all go for it right away. I just worry I'm going to wear it out before I really need it!!
Oh what we go thru...

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 15, 2018
In reply to @gaylea1 "@contentandwell I've had up to 5 attempts trying to draw blood. Sometimes they use my fingers..." + (show)
@gaylea1

@contentandwell I've had up to 5 attempts trying to draw blood. Sometimes they use my fingers or wrist. I usually end up with an IV technician. Also, when they withdraw the IV it end up spurting all over. Can't wait to get less blood tests.

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gaylea, It will get better after your transplant. Hugs.

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