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Help Hazel get through her Liver Transplant & Recovery

  • I AM OFFICIALLY LISTED

      4 December 2021
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    After a full on week of consults & tests, I was officially added to the Liver Transplant waitlist yesterday 🥳 I am now awaiting a call at ANYtime. It could be days or weeks but they suspect it won’t be very long, however, it is impossible to tell. Another person was listed yesterday too & received their call last night! I am a rare blood type so my list is shorter but also means less livers become available too.

    Due to my complex health & recurrent sepsis, time is important to have the surgery before I run out of effective antibiotics due to becoming more resilient with each sepsis flare, but also, they have said I am otherwise doing ok which means they have a little more time & would like to do a ‘split graft’ if possible.

    A split graft means that a donor liver can be split between me & a child which I think is absolutely amazing! It also means, as the surgeon said, these are the best livers possible to be able to do this & I will be told at the time.

    Thank you so much for your continued support, I am now up to 35 admissions in 28 months & feeling VERY grateful that the Drs concern that I could have had to stay in hospital in June didn’t play out, although I am there almost fortnightly, I am so happy I am home between.

    What a wild whirlwind, I will continue to keep you updated

    Love always

    Hazel

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  • A Patient, a PET & an Endoscopy walk into a hospital. . .

      23 October 2021
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    I have been back in the Transplant Unit in Auckland & the Liver Team have again confirmed I will be having a Liver Transplant in the near future.

    They paused everything for a moment to pinpoint the recurrent sepsis with a PET scan, this is confirmed to only be in my liver. Then to explore the possibility of removing a further 3 sections of my liver, unfortunately this came with complications as 1) they still don’t know why this happened so couldn’t rule out this surgery failing & 2) my Portal Hypertension needed further measuring to ensure I would avoid liver failure. After another group meeting, Dr Orr called me to confirm that a Liver transplant is the safest option, the hepatectomy holds too many unknowns & risks, especially as they discovered my entire liver is deformed & damaged.

    Bittersweet indeed, words I had already processed then a glimmer of hope for an easier path, but it is good to finally have the answer to getting out of this Curious Reality

    In December I will have my assessment week & my specialists are working out appropriate MELD score exceptions to ensure my MELD score matches my case as my case is so complex & rare, I don’t actually fit into the technical criteria. Luckily, I also have a rare blood type with a much shorter waitlist.

    Thank you again for all of your support as we continue to navigate this strange path. That was my 33rd admission in 28 months

    I really hope my strange, mysterious medical journey helps light the path for someone else in future. My medical team have been incredible & I am so grateful they gave my options so much investigation

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    • 24/10/2021 by Lynne

      Hi Hazel

      Lovely to hear from you. I am very pleased you are making good progress it has been a long journey for you and your family but there is light at the end of the tunnel now.

      I wish you well and I look forward to hearing from you in the near future.

      Kindest regards

      Lynne Barker

  • Episode 31

      14 September 2021
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    A little update for those of you following along. Firstly THANK YOU for your generosity. It’s humbling & incredible to feel so supported.

    Last week I had my 31st admission. A month or so ago, Auckland Liver Team put the breaks on, so to speak, as they were concerned about how often I get sepsis & my heart issues. “We have to make sure we won’t kill you” were the Drs heavy words. So they requested a specialist scan - a PET/CT which would use radiation to show where sepsis is happening, but I needed to have sepsis during the scan & it’s hard to book as it requires the tracer to be made in Wellington & flown up to be injected into me! Madness.

    Then, by some strange miracle, I stayed out of hospital for 5 weeks!! My longest time at home ALL year! Alas, then sepsis returned BUT it did mean the PET/CT could be done 🥳 So I am now awaiting the results. What we do know now is that it is ONLY in my liver, as Waikato expected, so now we await Auckland to make the next move as this proves a transplant should be safe.

    I also had an Angiogram {Camera into my heart through my groin} & they said my heart has healed & is acting normal again 🥳 I have a very mild heart murmur caused by a hole in my heart, but this may not really effect me now.

    I am doing my best to keep positive, one foot in front of the other & live life as much as possible between. Sorry for the delay updating this page, it just gets a little overwhelming sometimes, I still see your beautiful messages & support, it means the world to us xx

    Link to a video about PET scans:

    https://youtu.be/yrTy03O0gWw

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    • 16/09/2021 by Patrice

      Hi Hazel. Thank you for the update. I keep you and your beautiful family in my prayers. You bring so much magic and beauty to so many of us. I wore my gorgeous Mystic hoodie the other day. We’re in the middle of a HOT summer here in California, but I escaped to the cooler coast for a few days. I feel so special when I wear my hoodie and I always feel so close to you and your beautiful energy when I wear it.

      Stay strong dear Hazel. I am sending you so much love and healing energy. 💕✨💕

  • MRI number 10 & time is ticking

      26 July 2021
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    I had to take a moment to myself before this update.

    I was discharged on Friday as planned but this time they have decided they will nolonger give me oral antibiotics which means that at any time, I could end up back in hospital, we are just awaiting my next sepsis episode. Oral antibiotics were giving me a definate week or two at home, but I have become resilient & the team want to ensure I have some available after my transplant.

    I had another MRI on Friday to rule out an abcess in my liver which we are awaiting results for.

    My next scheduled appointment with the Auckland Liver Transplant Unit is in just over 2 weeks, although my team are trying to bring this forward if they can.

    I am so blown away by all of your love & support. When we made this page, we had no idea I was about to deterioate so quickly. It has been a strange 2 years of hospital, clinics, tests & surgeries.

    We are so grateful for you, I am struggling to reply to everyone but we are reading all of your wonderful messages.

    x Hazel & family

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  • Speeding up my transplant

      20 July 2021
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    The Drs are pushing for my transplant ASAP. They are keeping me until Friday & soon they may not be able to keep me out of hospital at all. Now I am awaiting an MRI which will be my 10th so far & they are requesting my angiogram to be urgent so everything is in place for transplant ✨ My body is deteriorating, we knew it would, just not this fast. My veins are collapsing, this picture is of a ‘blown’ vein, although it is hard to see. Both IV lines blew in 48 hours & it took 5 attempts to get another in.

    It all feels so real now. Thank you so much for all of your support, this went from 5 years away to 5 months away to asap in what feels like a heartbeat.

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  • Admission 29 & a thank you

      17 July 2021
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    Thank you so much for all of your support so far 💗 I am so grateful for you!

    I have just been admitted to hospital with sepsis again. This time my antibiotics finished only a day prior to what they are calling “Sepsis Flares” & the Drs are murmuring about my transplant being sooner again. 5 months felt soon enough haha.

    I am waiting on an angiogram to confirm that my leaky heart is strong enough but my specialist said it has improved in the last 6 months & he is confident the transplant is viable.

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