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.

@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.

@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.

@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.

@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.

@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.

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@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

@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.

@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

@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…

@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.

@jeanne5009

@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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@gaylea1 @contentandwell @jeanne5009
Have you requested that the lab use a smaller needle? When I am at Mayo, they use very thin needles. When I requested thin ones at my local lab, I was told that they don't 'like' to use them because they cost more. I insisted anyway! Well, now they use them all the time and it has made all the difference for me.
I don't know how much that will help pre transplant, though. But keep it in mind fro after you return home.

@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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A good phlebotomist is a blessing !

@rosemarya

A good phlebotomist is a blessing !

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@rosemarya yes I always get what is known as the butterfly needle. It's the smallest they have. My veins collapse or dry up or slide out of the way. I have lots of scarring on my arms due to repetitive attempts.

@rosemarya

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

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@rosemary I have to admit I am feeling so lost. I've been sick for so long I almost feel like giving up. I feel like my call will never come.

@gaylea1

@rosemary I have to admit I am feeling so lost. I've been sick for so long I almost feel like giving up. I feel like my call will never come.

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I used to have the same thing. But now either because of good phlebotomists, or being healthy that is part of my past life! I also have benefit of not having limited liquid requirement, and so I am careful that I am hydrated and that is (I am told) supposed to plump up those veins.
I send this to provide some Hope! It will get better.
Hugs

@gaylea1

@rosemary I have to admit I am feeling so lost. I've been sick for so long I almost feel like giving up. I feel like my call will never come.

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gaylea, I understand. I really do. I have been in the situation of living hour by hour. I did not know if I would make it until an organ became available for me. Every night I used to be disappointed that I did not get the call, and every morning I prayed, "Let this be the day." and always, "Thy will be done'" That was my focus.
I also felt a sense of peace by praying for my potential donor and his/her family every day.
Psalm 23 was and still is my strength. The Lord is "our" Shepherd. I send you my love and my prayers, dear friend.
Rosemary

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