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.

Interested in more discussions like this? Go to the Transplants Support Group.

kltchrmn | @kltchrmn | Oct 15, 2018

In reply to @kltchrmn "@contentandwell Thanks. I’m doing what I can and not doing what I shouldn’t!" + (show)

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.

gaylea1 | @gaylea1 | Oct 15, 2018

In reply to @jodeej "@gaylea1 what @jeanne5009 said is true. Breathe and occupy your time. "Waiting for the pot to..." + (show)

@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.

gaylea1 | @gaylea1 | Oct 15, 2018

In reply to @jeanne5009 "@gaylea1 Hang in there....you are in the plan....things will develop whether you worry or you don't...." + (show)

@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.

gaylea1 | @gaylea1 | Oct 15, 2018

@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.

jodeej | @jodeej | Oct 15, 2018

In reply to @gaylea1 "@jodeej thanks. I'm trying so hard but I'm at MELD 30 and more frustrated than ever...." + (show)

@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

JK | @contentandwell | Oct 15, 2018

In reply to @jeanne5009 "@gaylea1 @contentandwell I have one big fat juicy vein and they all go for it right..." + (show)

@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

JK | @contentandwell | Oct 15, 2018

In reply to @rosemarya "@gaylea1 @contentandwell @jeanne5009 Have you requested that the lab use a smaller needle? When I am..." + (show)

@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

JK | @contentandwell | Oct 16, 2018

In reply to @gaylea1 "@rosemary I have to admit I am feeling so lost. I've been sick for so long..." + (show)

@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

JK | @contentandwell | Oct 16, 2018

In reply to @rosemarya "I used to have the same thing. But now either because of good phlebotomists, or being..." + (show)

@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

JK | @contentandwell | Oct 16, 2018

In reply to @jeanne5009 "@gaylea1 Hang in there....you are in the plan....things will develop whether you worry or you don't...." + (show)

@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