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.

@amyintucson I don’t need tucking at the hernia site. I wouldn’t mind if they’d get rid of the extra skin due to weight loss!

@kltchrmn

@amyintucson I don’t need tucking at the hernia site. I wouldn’t mind if they’d get rid of the extra skin due to weight loss!

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I suggested the same thing – arms, neck, tummy tuck!

@amyintucson

I suggested the same thing – arms, neck, tummy tuck!

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@amyintucson @kitchrmn. All of those and eyelids too. Some days my eye lids are so droopy that they would be covered by insurance but other days they are not quite that bad. My Opthamologist suggested that I see a doctor that they recommend for that. If it interferes with your vision, it’s covered.
JK

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@amyintucson

I suggested the same thing – arms, neck, tummy tuck!

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@amyintucson aren't surgeries like that expensive? Just wondering as I have no idea.

@gaylea1

@amyintucson aren't surgeries like that expensive? Just wondering as I have no idea.

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Sure – but if they're already got me under!?!? A little gallows humor.

@amyintucson

I suggested the same thing – arms, neck, tummy tuck!

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@amyintuscon
Lol every surgery I've had…I think 8….I always ask if they can take out any fat….so far…no luck. My gyn gave me a nice smile scar for my hysterectomy though…..

@jeanne5009

@amyintuscon
Lol every surgery I've had…I think 8….I always ask if they can take out any fat….so far…no luck. My gyn gave me a nice smile scar for my hysterectomy though…..

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I am enjoying these recent posts. It is amazing, isn't it, how we can relate to each other in the midst of our woes and waiting with a little bit of humor?
I wonder if our transplant teams ever read this stuff! Hmmmm 🙂

@gaylea1

@amyintucson aren't surgeries like that expensive? Just wondering as I have no idea.

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@gaylea They are expensive when not covered by insurance. Otherwise I would consider having my droopy eyelids fixed. Eventually they will probably start interfering with my vision regularly. When that happens I will do something about it.
JK

@contentandwell

@gaylea They are expensive when not covered by insurance. Otherwise I would consider having my droopy eyelids fixed. Eventually they will probably start interfering with my vision regularly. When that happens I will do something about it.
JK

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@gaylea, @contentandwell – When those droopy lids interfere with your vision, do you think it might be covered by insurance? There's always hope!

@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.

@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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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.

@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 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

@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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@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.

@rosemarya

@gaylea, @contentandwell – When those droopy lids interfere with your vision, do you think it might be covered by insurance? There's always hope!

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@rosemarya I know they are covered by most regular insurances so I presume they are by Medicare also. Right now I just keep using eye creams and they do help. I suppose if I ever do get evaluated for surgery I should stop using those for a few weeks beforehand.
JK

@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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