Wednesday, May 15, 2013

LiveR

If you were to go on Facebook there is a closed group called "LiveR"--you would find 1,001 members at the moment.

 
All of these people are family members (mostly parents) of patients or patients themselves facing liver disease or failure. Most of these people are on because they or someone they know have biliary atresia, a liver disease of no known cause that affects infants and is the number one highest cause for pediatric liver transplant. It has an occurance of 1/15000 in the US, so its relatively rare. There is no cure for the disease, but there is a corrective surgery called the Kasai procedure that can prolong (and in a handful of case, prolong indefinitely) the life of a liver before transplant is needed, which is helpful since transplanting infants is riskier due to their small size.

I've been a member of this LiveR group since 2011, when Mona was diagnosed with BA at 3 months old and had the Kasai surgery then as well. For the most part, besides the meds she takes, we're blessed in that she is doing amazingly well. Miraculously well. She has developed beautifully and has only been hospitalized for a liver-related complication once (and only a few other times for other stuff).  I don't usually go on this Facebook group partly because Mona is doing so well, there isn't very often any news to tell of her liver--its stayed stable. Every time she's sick though, I have to be careful to not jump to conclusions and there is some anxiety I've faced with the whole not-knowing when her liver will fail but knowing that it will fail, and as her doctors tell us, probably before 10, could be months could be years. I must be more of a planner than I thought because that aspect of this disease bothers me more than I could have expected it would. Anyway, this was really uncharacteristic of me but I sent this comment onto the LiveR page last night, when I was feeling a bit weighed down. The responses themselves and the time and effort alone that people took to address my feelings touched me greatly. I found it really therapeutic and feel very at peace and overwhelmed with love for these families I have never met but feel so kindred with. Here they are:


    • OLDER POSTS
    • How do you parents with BA kids deal with the not-knowing anxiety? With the every time they get a fever,receive poor blood tests, act sick trying not to freak out and push liver fears aside until you know what's bugging them isn't their liver?

      My baby girl is 2 1/2, post Kasai but pre transplant. Her docs say she will definitely need a transplant someday, almost positively before she's 6. But I have so little to complain about. She's doing FANTASTIC! She's living a normal life and developing well both physically and mentally and socially. And yet sometimes I cannot shake this overwhelming feeling of anxiety for her future.

      I'm sure I cannot be the only one who struggles with this. For me, counting my blessings and praying for gratitude, and repeating the words "women of faith are fearle...See More
      Like ·  ·  · Tuesday at 11:06pm
      • 2 people like this.
      • Michelle Hooks You never get over the fear... you always worry......it sucks, but you are always thankful for the flu, or a stomach bug! I cant tell youit gets easier....but, you learn to "deal" better...I promise...Tayden will be 2 in 2 weeks. ..Kasai only;)
      • Shane Sinn Being post transplant I ignore the fear and enjoy the fact that my son is still alive and I enjoy watching him grow. If you let anxiety get in the way its hard to enjoy every minute with them.
      • Tayla Legerski you are definitely not alone in having this feeling. I do the same thing with shae. I do the same thing as you and jump to conclusions. I find that counting my blessings and prayer help me through those feelings... I too know the feeling when doctors give you an age of when they suspect a transplant will come and i'm here to tell you it doesn't make it so. my daughters docs never even expected her Kasai to work because of her complications. then, when it did, they gave her to age two before she would need a transplant. she is now almost 4 and her liver is as close to "normal" as any BA patients can come. she is our little miracle. so, keep your chin up and think positive!its hard because the thought is always in the back of your mind but I find that when it appears I shut it up with positive thinking about where my daughter was to where she is now. 
        Tuesday at 11:24pm via mobile · Edited · Unlike · 1
      • Ashley Venolia Cautious, but not fearful. There are so many things, liver disease aside, that are terrifying about being a parent. All you can do is make the best of the moments you're given and teach them to do the same. Everything else is out of our hands.
      • Tayla Legerski Michelle, that is definitely the truth! my friends all look at me like i'm crazy when i'm thankful to find out shae has the flu or a tummy bug!
        Tuesday at 11:29pm via mobile · Edited · Unlike · 1
      • Samantha Sutherland Took me years to get thru that feeling and Lara was transplanted at 7 months old. I guess it would take time for your daughter to decline in health so you would have an indicator. I hated living in fear all the time and waking constantly in the night to every little sound from her. We had to be vigilant for so long and it felt hard to stop but just know you are not nuts and not alone in this feeling. Try to live in the moment of health and not worry too much about the future. (I know its so hard!) One day you will not worry so much and life will seem so much more normal. Just enjoy your little girl and watch her enjoy life, she will take it all in her stride!
      • Gillian Dalton You just learn to deal with it , my son is almost 11 yrs post tx and its still very stressful and scary but you learn to deal .
        23 hours ago via mobile · Unlike · 1
      • Adelle Rennard i am the same my lg only 2 i always thort it would get easy but it dosnt cose there our bbys n we dont wont to c thm like that but the drs r realy gd n.u u c storys on ere n it guves u that lil more hope if u need a chat fell free to add me xxx
        23 hours ago via mobile · Unlike · 1
      • Gillian Dalton Samantha my son was also transplanted at 7 months
      • Nikola Leigh Carter Im exactly the same....millies 5 pre tx and it scares the crap out of me....her dr has said she definatley will need one and im constantly thinking what if the time comes and they cant find her one in time of what if she has a major bleed! Every fever or pain in her belly my mind just jumps to the worst thing that can happen....i think it just shows how much we care and love are children....hope your ok xxxxx
        22 hours ago via mobile · Unlike · 2
      • Candace Ariel Smith Hatch I know , it's the worst huh?! My daughter is kasai only 17m doing amazing but it's hard to shake the fear of then what ifs , keep praying on it and God will give you peace , but we are human and the devil loves to attack our thoughts so we have to be on guard at all times:) I like to close my eyes and picture her as a grown woman , and I can just see it so clear  
        It's normal and human to have these feelings but I know I've personally wasted so much time over worry I wanna stop
        18 hours ago via mobile · Unlike · 2
      • Candace Ariel Smith Hatch Sometimes I wonder if the parents of kasai only kids are MORE worried and stressed then parents if kids that go early to trans! ( which is completely crazy!) 
        I think we all worry over "waiting on the other shoe to drop) anyone ever feel like we are ju        ...See More
        18 hours ago via mobile · Unlike · 3
      • Meghan Rackley It's completely normal! I vent to Liverland all the time!! I freak out quite often. It happens. Keep your head up! I've been told that all good moms worry anyways, so it isn't just a BA mom thing  
        My babygirl is doing great right now but they are convinced we will have to talk transplant soon. I just pray about it constantly!

        Hugs to you!! <4
        18 hours ago via mobile · Unlike · 2
      • Meghan Rackley  haha not 4
        18 hours ago via mobile · Unlike · 2
      • Maria Newell my julia has been hospitalized every month nov 2012-april2013 with cholangitis/ blood infections, the last time she was hospitalized was because of a virus. She's on the transplant list with a peld score of 45, it's been so hard to see her go through so much.with that said I can see the improvement in the last few weeks, to the point that they are considering making her inactive. Right now because I can see it with my own eyes & because I feel a weird calmness in my heart I'm trying to enjoy her, & I am enjoying her, I know that she will eventually face transplant but I want to savor this moment.
        17 hours ago · Edited · Unlike · 2
      • Maria Newell When I say I've seen improvement, she's gaining weight and she went from sleeping all day to playing all day, making me one tired mommy.
        17 hours ago · Edited · Like · 1
      • Kristi Lynne Thomas ugh, I can lean on God so easy, until she wakes up miserable and feverish and then my brain starts thinking too much, lol. I try and keep my head on the day to day and leave the future up to God- but that's easier said then done, and easily said right...See More
        17 hours ago · Unlike · 2
      • Melanie Gaddis Koller Our son has Alagille Syndrome. He had a Kasai at 1 month, 4 open heart surgeries and countless other procedures. I learned very early on that I was going to enjoy every moment with him because I had no idea how long he would be with us. So, I worry and stress when I need to and try to forget that he needs a transplant, but may not be able to get one because of his heart.
      • Bridget Gauld Candace, the "other shoe" haunts me too...As for worries, not sure...we just have a new normal:(
      • Leah Moliengo We've gotten through everything so far because of our local liver moms. They are amazing!
        13 hours ago via mobile · Unlike · 1
      • Lee Ang Hi Rebecca Ellingson Cope, my BA son is 23, Kasai only. So, I can share with you my 23 years of experience! We were always in and out of hospitals with possibilities of transplant. I just want to say that it is natural for our emotions to go on a roller coaster ride, along with our faith. I believe that it is something all of us who seek a relationship with God have to go through to be where God wants us ... that is to trust and believe in Him COMPLETELY! It takes complete surrender to the sovereign and almighty God who allowed these things to happen. I can assure you that when you reach the point where your faith in God is unshakeable, the roller coaster ride will end and you will be on cruise control. Things are not rosy and sunny all the time, but there is always rainbow at the end if we keep the faith and are obedient to and live out God's Word. We need to truly believe that the sovereign God is good and promises to work things for the good of all who love and worship Him. I have much to share that I am not able to share on this site. However, I am always willing to share with those who are sincerely interested in tracing my footsteps. For many years now, I live my life relatively stress free (on cruise control, knowing that God is the one in control). My BA son is currently a research co-ordinator at UCSD for clinical trials on certain non-fatty liver diseases and will be applying for admission to a medical school for education and training to be a physician. I believe that his difficult personal journey with BA would make him a wise, compassionate and caring doctor. He is in the hands of my God! Surrounding yourself with people of faith who would sincerely and faithfully pray incessantly and believe with you would help you win half the battle. I am blessed with such a community! Always praying for BA and Liver families!   
        12 hours ago · Unlike · 2
      • Amber Tanner We take one day at a time here:) I am always worried, but when you let worry overcome you it isn't healthy. I have had my fair share of anti anxiety meds and depression meds. 
        When you are having a rough day and can't take one day at a time. Take it one hour a time. If an hour is to long take it a minute at a time. When a minute is to long take it seconds st s time. Lots of LiveR love 
        7 hours ago via mobile · Unlike · 1
      • Kathy L. Sain Oh sweet Rebecca, you will always have this perfectly normal not knowing feeling with you. You may not believe it now but it will make you stronger. My grown son; with a son of his own has BA. I always had that worry as do all mothers with children wit...See More
        4 hours ago · Unlike · 1

        Rebecca Ellingson Cope Wow, that was exactly what I needed. Saving your guys' responses so I can remind myself when I feel anxious again. Thank you so much for caring enough to answer. Lots of love and prayers to you all! I can't express enough gratitude, my heart is full and my mind at peace.
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