https://givealittle.co.nz/cause/help-olivia-eat-again

Olivia’s Broken Stomach, Dunedin (2025)

28/05/2025

It’s been a whole year since my Hickman line was placed. And there has been a wave of emotion and thoughts surrounding this. On the 18th March 2024 I had my picc line placed in my arm for hydration and medications and then on the 23rd May I had that replaced for a Hickman line in my chest. This double lumen line in my chest is a tube that goes down into my heart through my jugular vein delivering medication and fluids directly into my bloodstream bypassing my gastrointestinal system all together.

This line in my chest changed everything.
It flows with more than just fluids and meds—it carries my ability to live.
Because of it, I’ve walked back into classrooms, sat exams with clarity, sung songs at camps, tutored many high school students, climbed upmany places in the name of adventure and laughed with friends. I’ve travelled, I’ve lived—in ways I thought I’d never see again. I like to think I got 1/3 back from Germany, 1/3 back for my central line and 1/3 is still to come with my GJ tube.

But it’s also been heavy.
The routines, the sterile rituals, the beeping alarms.
The blood that wouldn’t stop in those many many months.
The hospital visits—so many—for sepsis scares, for bleeding, for just-in-case.
I’ve learned to tape and wrap and cover just to take a shower.
To endure skin that flares, bleeds, burns and stings.
To drive while feeling every tug, every rub.
It’s constant. It’s exhausting. It’s not invisible.

And yet—I’d choose it again.

Because before this line, my world stopped at my front door.
Now, I have glimpses of the life I’d only dreamed of ever getting back.
And even on the hard days, I carry it not just as a burden, but as a lifeline.

It didn’t just give me hydration—it gave me back pieces of myself that I had accepted were gone.

But more than all of this—it’s God who holds me.�His promises of goodness and grace have never let go.�Even when I’m overwhelmed, He is constant.�He finishes what He starts, and I know—He’s not done with me yet. This journey, with all its pain and beauty, is being woven into something bigger than I cant see yet.
And in every step, He is faithful. Despite me not seeing it I KNOW he will complete his work in me.

28/01/2025

It is SMAS Superior Mesenteric Artery Syndrome awareness day. SMAS was one of the compressions which nearly took my life in 2023. This condition is a rare disease which many struggle to get diagnosed with around the world. The inability for food to get through my intestines due to this compression combined with the other compressions and co-morbidities left me travelling to the other side of the world to save my life. I was dying from malnutrition and dehydration and I will forever be in debt to Prof Sandmann and Dr Scholabach for their care, kindness and treatment & in awe of the power of my God.

SMAS here in NZ is not treated well, diagnosed easily or given the treatment that it needs. Unfortunately this disease does kill and has killed around the world.

Even though this disease only affects 0.013-0.3% of the population I am not too rare care 💜

20/01/2025

Belated new year post !

2024 was a year of new beginnings for me.

I feel as though that I need to once again pay gratitude and praise to Germany, to Sandmann for saving my life. Because I WAS DYING & I WOULD HAVE DIED had I not had surgery, my vascular compressions + malnutrition had my on the brink of death.
So while there are many avenues developing for the treatment of vascular compressions for those us who were in search of our last ditch hope of survival Germany brought us to where we are now. Despite the every day battle of living with such hard comorbidity conditions I know that every day, every breath and every moment is a gift from you all & my surgery that I will never know how to ever say thank you for.

This year has been one of high highs and low lows. So I’m not here to say that this has been an easy or triumphant year alone rather a hard fought battle, only by the grace of God have I walked each day.
A combination of incredible opportunities like the Bussines Hall of Fame, SADD national leader & board rep appointments, academic excellence & blues for music, debating + academia, like stock pitching nationals, jazz band awards and Sunday morning worship have filled my year. Amongst so many more incredible highs I have also been acutely aware of having to be reliant on feeding tubes and central lines, many many appointments and road bumps. Between blood infections, clots, pneumonia, raw skin reactions & so many other things.

May this serve as a reminder that life is precious and every single day is deserving of praise & a privilege rather than being guaranteed or a right.
Once again I owe my life to you all, thank you for fighting to give me life 2.0. I truly am one of the luckiest people to have been given yet another year of walking along so many different paths carried by God alone 🙌🏻

10/10/2024

It has just ticked over 1 year since surgery on Sunday. It doesn’t feel real that it has been 12 whole months.

My life looks completely different, I can walk and do life, I go to school, play music. I run Christian group at school, volunteer, play worship & kids church. I recently went to Auckland coaching the readers cup girls, coach and compete in debating. I have also been a SADD national leader !

I celebrated my 18th, was 2nd nationally for stock pitching and was the best speaker, I was 2nd nationally for a university science quiz, was awarded a speaker award in Dunedin schools debating and placed 3rd with a speaking award for a debating tournament and just got a huge uni scholarship 🥳

Most of all I was chosen to fly to Auckland to give a speech as the class of 24 YES ambassador at the New Zealand Business Hall to Fame which resulted in being invited to meetings all over the country including meetings with Tend Healthcare, Sir Ian Taylor and many other opportunities. This was truly the definition of immeasurably more than I could have ever imagined. (THANK YOU !)

I firmly believe I would be dead right now if a year ago I had not been privileged enough to have had surgery in Germany. I will forever be grateful for the support, continual prayer and community that got me there.

While all of this is amazing my life is by no means easy. I still battle with severe gastropareis symptoms & EDS + POTS (&co) but my Hickman line has changed my life with hydration and anti nausea. The fight for acknowledgement, fair treatment or any type of feeding adjustment to make my quality of life better is still hard.

This year has brought so much good but it has also come with pneumonia, many infections and blood infection - almost sepsis scares. It has come with picc lines, Hickman line, bleeding, 10+ picc clots, a huge blood clot in my arm and blood clots in my lungs. It has come with prolortherapy, 2x weekly physio, a cracked collarbone and many days spent in bed BUT my life is 100% better than it was a year ago.

Here’s to 2025, my double degree in law and health science and all glory to God for the last 12 months!

(More updates to come)

21/07/2024

Update I posted on Insta about a week or so ago sorry for the delay!

So it’s been a minute since I posted an update and I’m so so sorry for that.

I’ve been wanting to wait until things had resolved or I had some answers before I posted but I’ve decided that I am going to give an update regardless. I’ve tried to say nothing because there has been nothing good to say at times things have been pretty hard!

I had a Hickman placed over 1.5 months ago and that was to be a better option as my PICC was failing, placement of the Hickman was semi brutal but all in all okay! A week after placement it began to bleed A LOT and is still bleseding which means dressings are coming off, it’s bleeding through onto things, I’ve got huge infection risk etc etc.

I have had to head into ED or to the IV team and even Peads helped me with one on a weekend, it’s been super frustrating not being able to get it changed once a week and be done.

This has happened because the cuff under skin isn’t being grown into by my skin, once the stitches come out that would mean my line would “fall” out. I’ve learnt how to do my own dressings and can do it all now which has been life changing.

Not a lot has been happening progress wise, I’m still struggling with my kings and pneumonia, keeping my kidneys alive with constant IV fluids and am beyond lucky to have access to IV anti nausea which is helping me to keep enough feed down to maintain my weight currently.

We are playing a waiting game with public specialists from all over the country and private ones too and honestly just a rubbish time of being passed around and just let down over and over and over.

I’ve just had the high cost treatment pool procedures being reviewed by parliament using my case & there are a lot of things in the works to attempt to change things for people.

Much love, more updates to come 🫶🏻

09/05/2024

Sooo as some of you will know I was booked for a Hickman line placement yesterday which was going to be amazing timing considering my PICC had blocked again & that my skin was covered in hives from the dressings.

After doing pre op bloods and assessments I was called the night before and told that I was not medically stable enough to have the procedure & general anaesthetic. That meant that instead of surgery yesterday I went in for a further conversations, to get my PICC unblocked + re dressed and just generally figure out what next.

So my PICC is unblocked but I need to head in today as well to get the best possible plan and advice about my skin. My Hickman has been rebooked for 2 weeks away, and we will be monitoring bloods, my chest and the other things that stopped me being able to have it done today.

It’s pretty gutting when you are literally doing everything right and everything in your control to keep yourself well & to be prepared for necessary procedures but your body just won’t play ball. It really makes you just want to cry because no matter how hard I try at the moment I can’t seem to get my body stable enough to have the procedures that will be life changing and beneficial to my quality of life.

28/04/2024

Middlemore hospital is not where I thought I would find myself after travelling to Auckland for an appointment with Fraser Burling among other things.

My appointment with Fraser went well, had 2 more prolortherapy injections and we discussed some next steps and treatments for some other issues related to my EDS.

I landed myself in hospitals and was diagnosed with a small bleed in my stomach, it has either come from a tear from my tube or another cause, we aren’t 100% sure but will continue to monitor this and am getting follow up once home.

We are still worried as I’m still incredibly sick and despite multiple rounds and types of antibiotics have still got huge infection showing in my blood and urine. The type of bacteria in my urine is particularly unusual and leads us to need to quickly investigate other causes, such as endocarditis or other source of infections. Depending what my blood cultures grow or don’t grow a plan will be made to treat things inpatient or outpatient.

Thanks for all the love and support, I’m doing well all things considered and making the most of the good moments whilst taking the bad as they come (which they keep on coming atm ahha )

Update since this was posted:

- the initial bloods that are back not the culture, have shown that I am anaemic (which makes sense), have still got high infection markers and that my blood is clotting too much even though I’m on blood thinners, and a couple other things that we are unsure about yet. Waiting for next steps and for cultures to grow which will give us more information.

18/04/2024

Today I received this beautiful gift in the mail from ! It was just the pick me up that I needed and was such a heartwarming encouragement.

They are a Christian organisation that send bundles to chronically ill people, you can nominate your friends who are need via their page and they will do their best to send you out a bundle ! I am beyond grateful for my bundle and the kind words included in it.

10/04/2024

Many of you are already aware but there will be plenty who aren’t, I have been VERY unwell for the last 2 weeks.
I developed a chest infection on Sunday 31st of March. I progressively got sicker and despite getting antibiotics early that week I didn’t get any better I got worse. I had no voice and could not stop coughing but again I though jt would be fine because it’s just a chest infection.

On Saturday I woke up with sharp pain my left lung when trying to take a breath, was extremely short of breath and honestly felt beyond awful but I didn’t think much of it I honestly thought I was just having a bit of a flare up. So I went about my day on Saturday, headed to a friend 18th etc but upon returning home I could hardly move, breathe and was very very unwell. On Sunday I woke up feeling pretty okay but by the time lunch came around I was in bed and slept though until Monday.

I went to the GP on Monday again to get more antibiotics where they said I needed to go to the hospital asap.
At the hospital I had testing done, meds thorugh my PICC while we waited for the results of the tests. They told me that I had pneumonia, a blood clot in my lung & a kidney infection. Had I not had my picc line and the ability to use it myself at home I would have been admitted.
I’ve got the power of strong serous antibiotics, blood thinners and plenty of fluid behind me to fight these infections + clots now!

It was disappointing to find out that my improved kidney function from the proper hydration is gone and my kidneys are really struggling again from all of these infections 😢

Today I saw blood in my second lumen. I went to flush it and it wouldn’t flush so I quickly ended up heading into the hosp with some enzymes to be put through my line. We did that and within an hour or so my line was working again 🎉

It has been decided by my team that a far better central like option for me would be a tunnelled Hickman line. So I am now on a waiting list to get this line.

It kinda feels like one problem after another after another at the moment but hey it’s all good and I’m on the mend!

05/04/2024

I’ve been sitting on the fact that I am 6 months post op for about a week now. On the 29th of March I turned 6 months & I cannot even describe how incredible it was celebrate the way I did.

I went to Easter Camp in Christchurch for Easter weekend and on the anniversary of my surgery I went up to the adrenaline forest. This is a confidence type course where you are harnessed in but 25m above the ground walking over obstacles and zip lining over a bunch of courses. I only lasted 3 courses and less than an hour but man was it an incredible celebration of my life 2.0.

It has wrecked me and my body (multiple visits to physio 😂) and a very long recovery nap but sooo worth it. Even though I was plagued with nausea, vomiting, pain & so many other symptoms over the weekend this would have been IMPOSSIBLE 6 months ago in fact it would have been impossible 2 weeks ago pre picc line. I was able to get adequate hydration and decent nutrition over the weekend which meant that I could go even though I spent so much time sleeping.

The best part of it all was that I was able to celebrate 6 months with Taylor . This was a full circle moment from finding out about AVCS, to staying with her family over summer and being soooo unwell to going to a confidence course and camp with her.

While I am still SOOOO unwell & by no means 100% better, I am well and truly 100% better than I was 6 months ago and even 2 weeks ago.

Even though I have a blood clot and hate the way these medical devices make my body look, they are all steps toward a better life while we wait with hope that as time goes on my stomach will recover and my body will start to function better day by day. But we also know that if this is as good as it gets once I’ve got surgical tube options for nutrition & bowel function surgery will still be 100% worth it.

I am choose to dance in the puddles and sing in the storm that is still my life because….
Life is so worth fighting for & there is hope + joy right around the corner of even some of the most hopeless feeling situations.

20/03/2024

PICC has been in for 3 days now and I am now able to run fluids at home whenever I need them as prescribed !
I’ve got a pump and am getting the rest of my supplies today which is going to be amazing! Thank you for all of your support :)

09/03/2024

Another day another hospital trip for dehydration and fluids. Unfortunately academics still call my name.
Poor little viens hardly holding on, while we wait for a picc line.

Calculus + ED for the win! (Right?)

Olivia’s Broken Stomach

28/05/2025

28/01/2025

20/01/2025

10/10/2024

21/07/2024

09/05/2024

28/04/2024

18/04/2024

10/04/2024

05/04/2024

20/03/2024

09/03/2024

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