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Karen Worley
finally getting listed
Wed May 1, 2013 8:48am
67.233.187.122

HI, Well after being pretty much a voyeur for the past maybe 12 years we are finally taking the step. I've been raising our 14 1/2 yr old granddaughter since she was almost 2 months old. When she was about 4 we looked into a transplant but I must say as much as I knew it was the right thing to do I also felt it wasn't right for us, either location or situation at the time just didn't feel right at that time. We went on to have about 7 yrs. of pretty much great control, no hospitalizations! Then puberty hit 2 yrs ago, OMG! It has been a nightmare since. It's almost like the first year of her life when I use to keep an overnight bag packed for the both of us in the trunk! A year or so ago we began to pursue a transplant only to find our nearest hospital voluntarily put their peds tx program on hold due a few doctors leaving and they didn't want to compromise the program. So now we have some great docs on board and they all work well together and have successfully a few patients already.
Destiney is a bit of a challenge now which is not a good result of waiting these ten years. She is 5 ft 120 lbs and severely autistic and strong as an ox, Nanny, (me), on the other hand kind of went in the other direction slower and weaker (tho I also gained weight)!
The team has been working on how to best make this transplant work specifically for Destiney and they have been wonderful. It's nice to see a team of Doctors working with the childs mental status being as important as the physical. So now we are just waiting on the approval of the insurance company and then she will be listed! Thank God too because we just started her on the new UCD drug Ravicti and for some reason we are having big problems. They are trying to figure out if it is due to malubsorbion or dosing. We were just released from the hospital last night with her staying on half protein and an increase in the med. And just when her hair is starting to break off again. A little over a year ago it all broke off to about 1/8th of an inch, and she has the most beautiful thick dark hair!
So that's our story and I'm hoping very soon I'll be posting we got the call and all went well! They did say it seems they have moved rather quickly once listed and I'm not sure if that is a geographic thing or what.
Best to All,
Karen & Destiney

    • Re: finally getting listedJoe Marquez, Thu Jun 13 10:37pm
      Karen, I meant to respond to this news a long long time ago. Hate to read that things have been a nightmare for the past two years. Praying that when Destiney gets her new liver it brings much... more
    • getting listedeileen, Mon May 20 11:50am
      Karen and Destiney, Good luck and our thoughts are with you! My son Jared was transplanted just before age 1, and he turned 16 this month! He's a sophomore in high school :) You really bring back the ... more
    • Re: finally getting listedAnonymous, Sat May 4 6:41am
      Which center you are following with? My baby girl has citrullenemia and we want her to be transplanted as well, but don't know which centers are good in this. Nadia
      • for nadiamarta, Wed May 15 3:40pm
        hi nadia, i am a allmost 44 year old women born with citrullinemia and i am listed for a transplant. i am getting transplanted at oregon universty hospital. where are you from? why are you... more
        • Re: for nadiaNadia, Wed May 15 10:30pm
          I am currently in New York, but planning to move to Texas. and my baby is 3 months old, we are from Pakistan. I want her to be transplanted because we are scared of hyperammonemia episode.
          • for nadiamarta, Sat May 18 9:53am
            nadia, has your child had a an eppisode of high ammonia since her dignoses?marta
            • Re: for nadiaAnonymous, Sun May 19 4:57pm
              Not episode, but her ammonia is staying high
              • for nadiamarta, Mon May 20 7:18pm
                nadia, so has she been hospitalized for her high ammonia? i go into the hosptial once to three times a month with high ammonia. i get tube feeds at night while i sleep of duocal, argenine, soduim... more
                • Re: for nadiaAnonymous, Mon May 20 10:32pm
                  Thank you very much Marta. Good luck for everything. Nadia
      • glad your listedmarta, Wed May 8 9:20am
        i am listed at ohsu university hospit;al in portland oregon. it is the only place i can be listed because it is the only place insurance will pay. i have been listed since october 3rd of last year.
      • Tx CenterKaren Worley, Sat May 4 7:59am
        Hi Nadia, We are in Florida and are going to Shands Children's Hospital @UF. Karen
    • for karenmarta, Thu May 2 9:12am
      hi karen, thanks for sharing your story. i am allmost 44 year old women with citrullinemia. i am the oldest living with this disorder. my citrullinemia was under control until two years ago when i... more
      • MartaKaren Worley, Thu May 2 10:53am
        Thanks Marta! You & I had connected about 11 years ago or so when I first talked with Joe online. Destiney also has citrullinemia, don't know if I said that in the previous message. I can't imagine... more
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