Emily’s Story

Site created on September 10, 2014

Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.



Emily has been on the liver transplant list for over 6 years.   She was born with a liver disease called Biliary Atresia.



For liver transplants you can be on multiple lists.    When a liver becomes available the people with highest MELD score get priority to see if the liver is a match. A match is based on the size of the liver and a person blood type.  Some people can receive a partial transplant from a living donor. Emily can not have that type of transplant.  She needs a whole liver. 



When a liver becomes available in that area they call people with high MELD scores to run test to see if there is a match. Last week when we were in hospital her MELD score was a 31.  The week before it was 26. Two weeks before that it was a19 Emily MELD score as of 9/9/14 is a 40.



Madison has been transplanting people with 27 to 30.  Froedert 30 to 34.



Last year  a new law was passed that if your MELD score is over 35 you get priority for all livers that are available in the Midwest so right now any liver that becomes available in the Midwest could come to Emily if it matches her size and blood type.



Her MELD score stays on record for 1 week.  So if her MELD score goes down (and it probably will go down at some point) that could affect her placement on list- but for 1 week she is at a 40 which is very high.  It is great for a chance to get a transplant but terrible for how it makes you feel.



Most likely she will transplanted at Froedert but it is possible she will go to Madison still.



She is very nervous about having the transplant although she understand she needs one.  They tell us if she gets the right liver (healthy one) she will have a normal life expectancy.  So that is what we are praying for.





Newest Update

Journal entry by Emily peterson-moynihan

I can't believe it has been two years ago today that I received a gift from a wonderful family that saved my life. At three in the morning my nurse came in to tell me that they have a liver for me. That was the most wonderful news. It was so earlier in the morning that I didn't want to call anyone. I think I ended up going into surgery at 10 that night. 
There has been up and downs through this journey. It seems like I bearly remember how terrible the surgeries were. I shouldn't say I don't remember because I do still have terrible memories, but it feels like it was longer than two years ago  
Everyday I am so thankful that I am alive. 
Over the past year I have been pretty  frustrated  Because I am still very tired and have a lot of pain. I still have pain by my liver and I have terrible pain in my knees. Which can be due to the antirejection meds. One of the side effects are joint pain. Well they were not lying. They hurt so so bad. I recently got  Cortizone injections and that has seemed to help. Hopefully that continues. Over the past couple weeks I have been feeling better than I have in a very long time. I just expected to feel great.  That was what I was always told that after I have a transplant I would be amazing. I'm still waiting to feel amazing. But I am trying to stay positive because at least I am here to see the boys grow up and  celebrate my marriage to the most wonderful husband. 
John is still so helpful and supportive. I thank God everyday for him. I can't even imagine my life without him. I love him so much. 
I think it has been 8 months or so since I have had to be in the hospital. This is the longest I have gone since my transplant. I go every 6 weeks for blood work and I just have to see my GI Doctor every three months.  The doctors are very happy with my progress. They don't really seem to address my tiredness.  Maybe in their eyes they look at the numbers and the numbers  look good and they know that at least I am alive. Which is very true. There are many days I have to remind myself of that too. 
But over the past year the hospital visits are less and I do feel better. I am so thankful to my donor and her family for making that choice to give me life, and for all the people that continue to pray for me and help me emotionally get through this long journey. Emotionally. This long jour continue to pray for me and help me emotionally get through this long journey. i just think of all the things that I would have missed over the past two years if I did not get my liver.  So thank God and my donor!!!!  
























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