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Jess"s Heart and Liver Transplant Grant a Wish Page

  • The story of Jess as told by Jess

      25 June 2018

    My names Jessica & I’m 24 years old. I’m here to talk to you about my life experience growing up with a complex heart & where I am now – It’s a little bit long but please bare with me, I didn’t want to miss out on any crucial bits!

    I was diagnosed at 3 days old with double in left ventricle, hypo plastic right ventricle, atrial septal defect, ventricular septal defect, transposition of the great arteries and leaky valves – Later on in life I went into heart failure, became permeant pace maker dependant & diagnosed with liver disease.

    1st surgery – 5 months old – 1993 (pulmonary banding)

    2nd surgery – a month before I was 3 – 1996 ( Fontan’s re-plumbing

    3rd surgery – 6 years old – 1999 (closed up a hole)

    4th surgery – age 18 -2012 (aortic root replacement)

    5th surgery – age 22 – 2016 (retiming of the heart)

    From age 7 – 17 my life was great, My childhood was some what ‘normal ‘ , I was happy energetic and had a huge amount of friends. My parents raised me like I was no different, which motivated me to be the same as everyone else.

    Now this is where my life tipped upside down, It was the start of a journey I had to endure for the rest of my life – Age 18 , May 18th 2012 … I had my aortic root replacement surgery, I was also meant to have my second Fontan’s, however they decided to fix my own aorta instead of replacing it with a pigs or a robotic one, which took up all the time & they had no time to redo my Fontan’s. I then went into complete heart block where a pacemaker was interested into my abdomen.

    I then endured lung issues where I had to have emergency lung surgery after 9 weeks of fluid that kept collapsing my right lung.

    I thought I was recovering fine until 2 months later, my chest hurt, I felt weak, I couldn’t move. My heart went into failure with a heart function of 5% - This physically mentally and emotionally destroyed me. It took a further 3 months to recovered where I was able to go back home. but by my surprise I recovered well…. For 2 & a half years anyway.

    2015 June – I got the flu, I was extremely sick and had to have another heart surgery where they found out at the same time I had severe liver disease. This heart surgery was my last resort before we walked down the path of transplant. Not one transplant but 2. The surgery did not help my heart in anyway so we had no choice but to accept double transplant.

    NZ first heart & liver transplant performed on a heart disease patient.

    I went through the assessment process, and was accepted onto the double transplant list for heart and liver on 26th April 2017 .

    Later on that year I became dependant on a portable defibrillator that I need to take everywhere with me due to my heart going into VT beats. VT heart rhythm is like your heart is preparing for a cardiac arrest. However I have not yet gone into cardiac arrest. These are just obvious signs of my heart getting weaker over time yet there is nothing I can do except wait for my transplant call.

    Since diagnosed with stage 1 liver disease in 2016 I have now reached state 4 liver disease only 2 years later – verge of liver failure.

    Between august 2017– march 2018 I had a large amount of VT episodes where I now need 24/7 supervision or have to live in hospital until transplant.

    Everyone who looks after me have to be trained in CPR.

    I am still here, I am still thriving, & it has now been 14 months waiting for this transplant.

    No matter what you go through in life, every day above ground is a great day, never forget that. Life is hard, but there are others out there who have it worse off then you do, so appreciate what you have & love the life you live. Just remember Bad days don't last forever. You can get through anything if you hold onto hope & strength. Be positive, even if there's a negative - find the positive, because a positive mind will also help you over come a world of obstacles.

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