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It's not all about the MELD Score
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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@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.
A good phlebotomist is a blessing !
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2 Reactions@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.
@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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2 ReactionsI 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.
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1 Reactiongaylea, 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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2 Reactions@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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3 Reactions@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!
@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
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!