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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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@shogg, That is perfect! My husband went with me to my initial consult appointment which was in Lexington KY. We had no idea what our consult would entail, and we discovered that we were there for most of the day. I remember that I had a crashing headache as the day started with fasting labs, and my nausea prevented me from eating much. However, it was a most informative day for us. I know that she will have a lot of information to share with you afterwards.
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1 Reaction@rosemarya As you know my husband is in a similar situation where his inguinal hernia is painful and limits his activity but doctors don;t recommend surgery./repair because of his ascites. I was wondering if you knew of development of any new procedure to treat inguinal hernia repair for ascites patients. Thank you.
I have end stage liver disease. I have gone through all the tests that my transplant team needed. (U of R. Strong Hospital) My MELD is a 13 and only moves a point up or down once in a while. I am in generally good health, the Two problems I have right now is ascites and a umbilical hernia. I had the TIPS procedure done because I have large volume ascites. Unfortunately the procedure did not help at all with the ascites. (still getting drained about every Ten days at 7 liters.) So now my team is thinking of putting me on the transplant list even though my MELD is low. They have decided to try one more thing. Albumin infusions to combat the ascites.
I hope you all have success stories to share in the near future. I will update on this thread if the Albumin infusions work or they decide to put me on the transplant list.
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1 Reaction@marinab, I do not know of any new procedures related to hernia repair for transplant patients. However, I would like to refer you to a discussion where some members are discussing their experiences with hernia repair. Some of these members might have some information. Or they might have some hints that helped them with the discomfort.
https://connect.mayoclinic.org/discussion/incisional-hernia/
@rosemarya Thank you - just looking at all possibilities....
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1 ReactionI take two different pills for ascites and its kept it well under control. Furosemide which is lasix for the ascites and spironolactone for the edema. I take a very low dose but it does the trick. I don't however have the complication of the umbellica hernia. Maybe that makes a difference.
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1 ReactionDoctors recently diagnosed as decompensated liver from acute liver failure. Meld score is 43. No liver cancer at this time. 21 months out from Car-T Yescarta and in remission for DLBCL and Follicular. Do I have any options?
Hi @tommyg, welcome. I see that you're looking into options for acute liver failure. Here is a good place to start and gather information about:
- Liver Transplant at Mayo Clinic https://connect.mayoclinic.org/blog/transplant/newsfeed-post/liver-transplant-at-mayo-clinic/
Has liver transplant been discussed with you as a potential option?
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2 ReactionsI'm 42 and had a inguinal hernia repair after which I started having issues going number one and 2 I have pain in the area of the hernia . I have alot of frequent urges to go but can't and also can only partially empty bladder and facial matter after going number 2 I leak for the rest of the day . To me it feels like I have pressure on the hernia area before needing to go any help with this would be awsome.
@cicenhower, Welcome to Connect. As a patient, I have not have an experience similar to yours to share with you. However, I cam only imaging how miserable you are as you try to go about your daily life activities. How long ago was your surgery? Have you discussed this with the surgeon or with your current doctor?
I am assuming that you are a liver patient, so here are a couple of hernia groups with transplant patients -
-Hernia Surgery scheduled
https://connect.mayoclinic.org/discussion/hernia-surgery-scheduled/
-Incisional hernia after transplant: Anyone else?
https://connect.mayoclinic.org/discussion/incisional-hernia/
Cicenhower, Are you a liver patient? Are you waiting for a liver transplant? Have you had a liver transplant?