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.

@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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@gaylea1
Hang in there….you are in the plan….things will develop whether you worry or you don't. Can't imagine what those last days waiting are like…I sense you are strong and organized so try to find something totally different to occupy your time…needlepoint scrapbooking or just reading a book to distract you. Feel free to return this advice when its my turn…lol
Think good thoughts..you have many people surrounding you that you hardly know that care.
Godspeed this transplant.

@rosemarya

@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.

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@rosemarya

Never knew it was possible…I never look at the needles but I will make sure it's as small as can be…you are a wealth of knowledge and caring!

@jeanne5009

@gaylea1
Hang in there….you are in the plan….things will develop whether you worry or you don't. Can't imagine what those last days waiting are like…I sense you are strong and organized so try to find something totally different to occupy your time…needlepoint scrapbooking or just reading a book to distract you. Feel free to return this advice when its my turn…lol
Think good thoughts..you have many people surrounding you that you hardly know that care.
Godspeed this transplant.

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@gaylea1 what @jeanne5009 said is true. Breathe and occupy your time. "Waiting for the pot to boil" will drive you crazy. Pray and let God handle it. (Or whatever your belief is) It will happen in His perfect time with your perfect match.
Blessings,
JoDee

@jeanne5009

Never knew it was possible…I never look at the needles but I will make sure it's as small as can be…you are a wealth of knowledge and caring!

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Jeanne, You give me too much credit – I learned this by chatting with many phlebotomists along the way:-) Someone else mentioned that they are called Butterfly needles. But there might be another name.
I never look either!

@kltchrmn

@contentandwell Thanks. I’m doing what I can and not doing what I shouldn’t!

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Got my three month MELD update today: up from 11 to 16. Makes me feel better as I was concerned it wouldn’t change much. Dealing with exhaustion now – resting in all my spare time so I can keep going to my part-time job. Thinking about going on disability through my employer.

@jodeej

@gaylea1 what @jeanne5009 said is true. Breathe and occupy your time. "Waiting for the pot to boil" will drive you crazy. Pray and let God handle it. (Or whatever your belief is) It will happen in His perfect time with your perfect match.
Blessings,
JoDee

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@jodeej thanks. I'm trying so hard but I'm at MELD 30 and more frustrated than ever. I am so tired of being sick. 2 years now and my MELD has only moved from 25 to 30. I have been putting my faith in prayers but as we all know the decision will be made when best suited. My days are long and tiring. I am just so fatigued, mentally and physically. It's really taking it's toll on Me. I have no quality of life right now.

@jeanne5009

@gaylea1
Hang in there….you are in the plan….things will develop whether you worry or you don't. Can't imagine what those last days waiting are like…I sense you are strong and organized so try to find something totally different to occupy your time…needlepoint scrapbooking or just reading a book to distract you. Feel free to return this advice when its my turn…lol
Think good thoughts..you have many people surrounding you that you hardly know that care.
Godspeed this transplant.

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@jeanne5009 thank you. It's just that my MELD has only moved from 25 to 30 in 2 years. I've read dozens and dozens of boos, watched Netflix and Britbox, doing diamond paintings but I get so tired and can't concentrate for any period of time anymore. My quality of life is non existent.

@rosemarya I feel your warmth and empathy. I do trust in the Lord and know I shouldn't lose faith. I'm just in despair and I guess that's normal. I do pray for the transplant donor's family and hope they are consoled with the fact that they have given a gift of life through their loved one.

@gaylea1

@jodeej thanks. I'm trying so hard but I'm at MELD 30 and more frustrated than ever. I am so tired of being sick. 2 years now and my MELD has only moved from 25 to 30. I have been putting my faith in prayers but as we all know the decision will be made when best suited. My days are long and tiring. I am just so fatigued, mentally and physically. It's really taking it's toll on Me. I have no quality of life right now.

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@gaylea1 I can only imagine how difficult waiting is for you. My husband's MELD moved very quickly due to his cancer in his liver. I pray that you get your call soon.
Blessings,
JoDee

@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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@jeanne5009 I have one, not a great one but it seems to be the only usable one. Sometimes It seems like I have a permanent bruise there.
JK

@rosemarya

@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.

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@rosemarya I have no idea what size needle the phlebotomist uses, but if he is there he never misses. If he is out, some of the subs have been really terrible. Thankfully that doesn’t happen too often.
JK

@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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@gaylea1 don’t ever give up. Sure, there are days when you feel like it, but you have to hope for the future. I did extremely well until sometime in August 2016, and then things started going downhill fast. I gained about 35 pounds of water weight, and I felt very poorly. I was told i would not get a transplant until at least November and felt despair that I couldn’t endure feeling that bad for that long. My husband didn’t tell me until afterward that he thought that he was going to lose me, and my sister did also. Then on September 22 I got the miraculous call so much sooner than anticipated. My transplant occurred at @ 12:30 A.M. on September 23. It still seems surreal to me. One thing that amazes is how calm both my husband and I were on the 1.5 hour drive!
Your time will come, probably very soon, try to think positively.
JK

@rosemarya

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

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@rosemarya I do think being well hydrated makes a big difference. I pretty much always am now due to having to drink 80 – 100 ounces of water a day to keep my kidneys happy.
JK

@jeanne5009

@gaylea1
Hang in there….you are in the plan….things will develop whether you worry or you don't. Can't imagine what those last days waiting are like…I sense you are strong and organized so try to find something totally different to occupy your time…needlepoint scrapbooking or just reading a book to distract you. Feel free to return this advice when its my turn…lol
Think good thoughts..you have many people surrounding you that you hardly know that care.
Godspeed this transplant.

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@jeanne5009 @gaylea1 great advice. I think one of the reasons I did manage so well for so long was because I refused to give up my regular life, which includes going to my health club ar least 5 days a week. It benefited me both physically and mentally.
JK

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