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Nutcracker syndrome gets 0 stars. Please help me get it fixed in Australia!

  • Long overdue update

      1 April 2026
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    Hi everyone, sorry this is long overdue.

    Flights and accommodation are booked and we leave on the 9 May, returning on the 13th. I booked before the fuel crisis!

    Everything was much cheaper if we go the day before so we're hoping to do a little bit of sightseeing while we're there 🧑‍🦼💨

    Things are still rough and I feel like I'm balancing on a tightrope.

    The last 2 weeks I've been in hospital with bacteraemia. My central line was clear but it was pulled anyway and I'm just doing time until I can get another one placed. I need to have one more set of clear blood cultures and then hopefully my line will be replaced after Easter.

    Many of you have asked what the surgical options are, and to be honest I'm not entirely sure. There are a couple different options, but I've been told the mechanism of compression is different to others with Nutcracker as the portal vein is enlarged too and that does complicate things.

    It's going to be really good to see this surgeon in Canberra. He can see my gloriously unique bag of bones in person and we can make a game plan. I sense it's not going to be as simple as just booking me for surgery, but at least I'll have a clearer path forward.

    It's scary and there are a ton of unknowns, but for now, "when i am afraid I put my trust in God; I have no fear" Psalm 56:10

    Here's a pic of me having a cuppa for the first time in 10 days!☕

    With all my aroha,

    Nic 🌻

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  • Looking at flights!

      25 February 2026

    Hi you amazing people! Your support has been incredible! A couple of weeks down the track and the giddy high is dissipating 😍

    There is SO much to organise & I'm not a traveller. I much prefer wheels over wings, and my backyard over some distant land, so the thought of going overseas is daunting.

    I have a lot of extra considerations and it's not as simple as just getting on a plane.

    Firstly, I've spoken with AirNZ to see what's available, as I am a bit different. People assume that it's just my legs that are affected when they see my chair, but it's much more than that.

    I am connected to IV electrolytes most of the time through a bulky hospital pump. I really tank without (& quite quickly too) so navigating that while travelling is a mission, as the pump is not ambulatory & they won't give me a smaller, more manageable one.

    I'm unable to sit upright for very long either, as my spine HURTS. It also compresses my guts, giving me obstructive symptoms where I almost explode with air and bile so I'm going to need to book a sky couch. I'm not a princess, but don't see any other way of being able to travel.

    Things are slowly falling into place though and each day I get to tick something else off the list!

    "But for me, the nearness of God is my good; I have made Adonai Elohim my refuge, so I can tell of all your works"

    Psalm 73:28

    Until next time, with all my aroha,

    Nic xxx

    (Please keep sharing!)

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  • Wow!

      18 February 2026

    Hi you amazing people! I'm absolutely floored. I've tried drafting an update over the last day but kept deleting it because i actually don't know how to convey what I'm feeling into words! I have been so unwell and my current situation is pretty untenable so to have hope that things will change is so exciting (terrifyingly so!).

    I'll update more a bit later, but for now, from the bottom of my heart, thank you. Please share!

    "But in my mind I keep returning to something, something that gives me hope - that the grace of God is not exhausted, that his compassion has not ended. On the contrary, they are new every morning! How great your faithfulness!" Lamentations 3:21-23

    With all my aroha, Nic 🌻

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