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4 months post liver transplant

Hi Everyone--

My name is Alicia, and I am 27.  I got my transplant at age 26.  I was active the list for only about 2 weeks before I got 'the call'.  It was very traumatic. I had no idea how long of a process it would be to recover and find myself again.  As I start to more physically heal, and become stronger, i find that I am having pretty intense flashbacks of moments before the transplant, during the transplant and post transplant.  I am a very emotional woman. I have been playing the violin for 23 years. You can hear me here ( https://www.youtube.com/watch?v=hEb0ZWVknCI ) . 

Months before the transplant i was VERY skinny and was constantly criticized.  People thought I was on drugs...  When I was in graduate school studying Violin my violin teacher called my mother and accused my mother of lying to herself and saying that I was a drug addict and FORCED me to take a drug test.  Which I passed !!!! The teacher never even said sorry.  It has been tough, I am always fighting a stereotype. My Violin teacher at that time had known me for 13 years, and it was horrible to go through what horrific things she said to me and my mother.

 I am naturally a petite girl.  I am 5'4 and before I started going into liver failure I was about 117.  When I went into the transplant I was 92 pounds.  I then had a complication in the first month and had a blockage in my biliary tube and got down to 89 pounds.  It made me cry when I would weigh myself.  It was terrible and so uncomfortable for my bones and body.  I have bad bones naturally and bad bone density and osteoporosis. 

I met my husband in 2013.  He is from New Zealand.  We got married the next month , but could only do a quick ceremony since we were more concerned about him staying in the country with me.   It was a beautiful court ceremony.  But I got my dress for 30$ at Macys and it was very impromptu.  I loved it though. We decided in 2016 to have a ceremony that was big so that he family and friends from NZ could meet my family. :)  It was literally 2 months before my transplant. May 15, 2016. My tx was July 13. I remember how sick I felt but at the same time how happy I was.  I was so skinny it was very hard to not feel self conscious and know that THAT was what everyone was thinking.  I might be insecure on it. who knows.  

.my wedding was even written about in a blog ! see here ----> https://winecountryweddings.com/coastal-jewel-tone-wedding-alicia-jeremy/

I find that I am having flashbacks constantly where these intense memories just hit me so quickly and i become emotionally overwhelmed. HAS anyone gone through this??  Also if anyone is in their 20's i would love to chat with you ! I don't know anyone my age going through this.

Thanks for reading.

Alicia 

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Replies

  • Hi, Alicia! I'm so sorry to hear you had such a hard time with your Tx. I'm Heather, 27, and I'm currently on the list for a liver and kidney. I'd love to chat sometime, and hope things have improved!

  • Alicia,
    My name is Brent, I am a little bit older than you but can relate to what your are going through.
    I was diagnosed with Hepto cellular carcinoma in 2013 given a year to live without transplant. Fortunately a organ became available to me just in time and I was outside of the Milan criteria. I have been hospitalized post-transplant 4 times due two different types of organ rejection one being very rare.
    Today I am doing well, however thoughts of the horrific pain and suffering that I went through continue to haunt me. I really don't have the answer for you, I'm still searching myself. It's very difficult for others to understand unless they have gone through what we have. I do find some relief in writing down my thoughts I have published a book of poems surrounding my illness . Some of my writings are dark and some are uplifting and all of them are from real emotion. The book is entitled "No one fights alone" and is available on amazon. I will share one with you I hope this helps.
    Brent Trammell.

    The Fight

    I'm sick, I'm weak, I can't eat, I can't sleep, I can't remember last week, I always repeat what I just said, can't concentrate, I'm confused,
    can't get out of bed, I need my meds, can't brush my teeth, even putting clothes on I have to cheat,
    When will this end, who did I offend.
    I'm high, I'm low, I'm too slow, I don't know, what will happen to me next, don't know what to expect.
    I can't climb a stair, ain't got no air, always in despair,
    I need some help, these are the cards I've been dealt.
    I'm hot, I'm cold , why do I feel so old, body is suffering, feels like network congestion and buffering.

    No beginning no end, no family, no friends, here with me now, got to make it somehow.

    Hospital again, 6th floor we are friends, family in shock but here around the clock.

    It's serious now, Doctors on the prowl, talking in code, don't want me to know, until they're sure there is no cure.

    There sure , they confer there's no cure, it's a blur....

    Ok, no shame, no playing the blame game, no more vain, staying in my lane, I'm going insane .

    I have cancer.

    By Brent Trammell
    • that takes a lot of strength to share your poem. <3 i understand somewhat the pain you went through with your words. 

      i play violin so that helps :) there arent any words but to me its the same emotional release. 

      hang in there and stay positive ! a

      xx

      Alicia

  • Dear Alicia,

    It took me quite a while to recover from my transplant experience as well. I was in the hospital for about six months after my surgery because my lung collapsed shortly afterward resulting in about a four month stay in the ICU. I have strange memories of that time because I did some hallucinating after being there for so long. It took awhile to accept those as not true and I had some distressing moments when they came back to mind. I had to decide how to redirect my life after my illness had stopped what path of life I had hoped to pursue. I agree it helped to at times just let the tears flow so that my emotions could have some release. I have also learned it is better not to deny what I am feeling, but I need to direct it into more positive actions. Like you I also play the violin and this has been one excellent way to let my stress out. However, mostly I have self taught except for the first few years so I am still quite a novice in it, but that does not prevent me from enjoying it any the less. I have also been very thin for a long time because of my digestive troubles and know the pain of people accusing you for being that way. I was about 5'6", but due to osteoporosis, I am now 5'4". My healthiest weight was around 118, but during the course of my illness I have gotten down into the 70's at one point before my transplant, and I am now in the low 90s. I have struggled with low self-esteem, but I am learning to accept myself as best I can. It helps that I have good support in my immediate family, and in thinking of my donor, I remind myself I have a purpose to spread the love that was showered on me. I had my transplant when I was near your age, 25, although that was about 11 years ago, so I heard the statement a great deal that "you are too young to go through this."  I found it somewhat annoying too.  However, I am just so grateful to be alive. I have ups and downs still, but I know I am not alone, and that for me is a major help. It is a reminder for me to reach out, and it is this forming of connections which enriches my world and makes it all worth it. Never let go of hope and keep playing that violin with gusto!

    Warm regards,
    Bobbiejo

    • Thanks Bobbiejo I needed to hear that.

      Brent Trammell.
  • I was in the hospital with my transplant for 5 months. It took years and years to go one day w/o thinking of my experience. Eventually that stopped. My heart stopped during my stay and my wife and son were told I would not make it. But here I am. You just have to stay positive and enjoy your gift of life. As far as the medications, my kidney functions are fine after 17+ years. I golf and ride a Harley. I am out almost every day doing what I enjoy. Yes, it does take a toll on your body but it sure beats the alternative! Keep smiling and enjoy life,

    • thats a really long time to stay in the hospital. im so sorry. but im so proud of you for being strong and getting through it, you have a fight for life! thats why you are here. 

      i remember that same feeling when i was in the hospital, just fighting to get through it ! I am so happy you have a son and wife. 

  • Hi Alicia,
    I'm Katie and I had my liver transplant less than 6mo ago. I'm not in my 20's yet but I'm pretty close at 18. I understand what you mean about bad flashbacks! I think a lot of transplant patients, especially those who were faced with extreme trauma, can understand that. It's has been hard for me to get back to normal because I don't feel like I can trust my body after it made me go through all that crap. It's like I can't move on because I keep thinking about the horrible situation I faced not 6 mo ago. I feel alone sometimes because it's not like there is anyone around me who has gone through any of this... it's hard sometimes. I would love to talk with you if you'd like! There are really good days and really bad days, so I try to distract myself by volunteering and going to classes. Just wondering, do you have a good support system? Because I know that when I feel like I just need a good cry because life is unfair (I cry a lot) I will go to my mom or my best friend and just let the river of tears flow. Maybe if you talk to someone you trust about it and just let it all out without thinking, you might feel better. Of course, I am free to talk any time!! I know it girl. I feel that feeling, and it's a horrible, confusing, scary feeling. You are in my thoughts!! Xoxo
    • thank you <3   i dont really have anyone i can cry too..my husband jut wants me to be happy. so he cant stand me being upset. but i cry alone in the tub and it feels better.. im happy i can finally take baths. that was super hard. i dont trust my body either, i feel like its never gonna give me a break or let me MOVE ON. ya know? <3 im thinking of you too.. you are so strong !!! and im not gonna say you're so young,cuz i HATE when doctors or technicians would say that to me like.. 'oh wow your so young with all this' ..gr. D:

      • That's so sweet that your husband only wants your happiness! So I just realized that you had some of wedding photos in the link that you posted, and you and your wedding were absolutely gorgeous!!! Well, I know that we really only have the internet to communicate through, but you can talk to me anytime. I have been desperate for someone to talk to, if you know what I mean. Like my parents and friends can be understanding, but they don't actually understand. I know that if I don't cry for awhile it kind of builds up and I explode in tears at really inoppourtune times.. like while giving a speech... yeah that happened. It's good that you can cry in the tub though, it's all a part of the process of healing so don't be afraid to hold back! Haha! THANK YOU for being about the only person who doesn't say the phrase "you are too young to go through all of this". I hate that too!
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