Help get Life-Changing Surgery

Okay, I've listened to all the encouraging messages to get over my fears, to set up this fundraiser for my upcoming necessary surgery.

(TLDR, short-version included if not interested in the full story).

Target updated Oct 8th (scroll to bottom for more)

Background - What happened?

Hello! I'm June. Most know that I'm a solo parent, a fitness trainer and over the past few years I have run a specialist exercise studio for women, which brought me great joy and pride.

In April 2023, I woke up after a supposedly straight-forward procedure, in severe pain. Pain that brought me to the floor, crying in agony and I have not had a pain-free day since.

I spent months in and out of the Emergency Dept with extreme pain and high heart rate, begging them to investigate why this was happening. Instead, I was consistently undermined, dismissed and even told my physical pain was psychological. The consultant refused to do any imaging and suggested I seek counselling instead.

Thanks to the support of my incredible GP, I secured MRIs, CTs, Xrays and a transfer to another hospital for laparoscopy. These investigations concluded that I had SIX significant conditions - some directly caused by the procedure in April, and some simply 'missed'.

I have had 3 surgeries in twelve months, numerous hospital admissions and several pain management interventions (including IV morphine and even stronger meds) but nothing reduces the pain.

I'm still in pain 24/7, 365.

The Impact.

When your entire life revolves around severe pain, it is very hard to even imagine light at the end of the tunnel, let alone see it. It's a very dark and extremely lonely place for an exhausted mind and it has pushed me to my absolute mental limits.

I've lost my ability to exercise, to stand long enough to cook regular meals, to socialise, to enjoy any of my hobbies and obviously it has significantly impacted my business and income - rendering me essentially disabled.

My personal training sessions became replaced by hospital appointments (and just full days in bed, unable to move with pain). And until the lease for the gym is expired, I've had to pay other trainers to take several of my group sessions.

So, Now What?

I've been referred to non-expert consultants in Ireland and have learned about waiting times of 2-3 years. Even then, doctors in Ireland do not have the up-to-date specialist skills or MDTs necessary for the complex surgeries.

After hearing incredible reports from other Irish women, I recently travelled to a centre of excellence in Bucharest for specialist MRI imaging and a consultation with a specialist surgeon.

There, they identified Stage 4 D.I.E. - a systemic inflammatory disease which has infiltrated my organs, pelvic structures and is also now growing on my nerves - explaining my difficulty with walking.

The disease was described to me as complex, aggressive and progressive, with potential for organ failure/loss if left untreated.

BUT - unlike the doctors in Ireland, the multidisciplinary team in Bucharest do have the up-to-date skills to excise all the problematic tissue to save the organs, resection parts where necessary, and do a neurectomy for further pain relief.

This would essentially free me from my 24/7 pain and allow me to have a normal life again!!!

The Tricky Part (as if it wasn't already tricky enough)

The HSE will reimburse a percentage of the surgery abroad (not all) but I need to be able to pay it all upfront, as per protocol. Flights, accomm, essential post-op medicine, recovery time and additional costs also need to be factored in. Meaning I need to gather approx €10K before my surgery date on the 8th of November. (Read updates below for info on these costs)

The lending institutes can't support my application for a loan, because a self-employed person is not an ideal candidate (let alone a clinically disabled self-employed person with a dependent, on a solo income). Which is also understandable, because after the surgery I will be unable to return to work for a while.

My family have been an incredible support up until now and I will need them to support other vital things, aside from this surgery. Such as recovery care and income loss.

Your Support.

I find it VERY difficult to ask for, or accept, help from others. It hasn't always been a great experience in the past. So, doing this is making me quite nervous.

But my friends keep reminding me that this is not a personal failing. Instead it's a massive failing of our system to respond to Irish women's health needs (once again). If nothing else, this is also awareness- raising.

I don't expect anything major from this, but every little helps.

If you can't get involved financially, I fully understand. Please just keep the inequity of women's health in mind when you go to vote in coming months.

Once I get back on my feet, I will pay the kindness forward to other women - as I always try to do anyway. And certainly will be an advocate for others facing the same conditions.

The TL;DR Short version:

Irish hospitals failed to recognise, diagnose or properly treat significant disease - causing me extreme 24/7 pain.

I've recently learned it has reached stage 4 (i.e. infiltrating some of my organs). It is progressive and aggressive, and if it isn't treated promptly, there's a risk of organ failure or loss.

Irish doctors do not have the skills/MDTs necessary to surgically treat advanced stages and complex cases of this disease.

Therefore, I need to travel to a Specialist Centre in Europe for excision surgery on the first week of November 2024!!

Lending institutions can't back me up (detailed story above) and I need to have the payment in advance of surgery.

Many friends and advocates have suggested this as a way to allow others to help out. But please don't feel obliged. Times are tough for everyone!

I'm so grateful for all the support so far, even just the supportive messages landing in my inbox daily.

Xx

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An unexpected update 8/10/2024

Firstly, thank you so much to everyone who has supported so far, by way of either donation or passing it on. It's incredible and overwhelming to receive so much love, and to see the support rise so fast.

So what's the update?

Early Monday morning, I received some documents from the hospital abroad and got a shock to see figures I hadn't seen before.

My initial estimation was based on a conversation with the surgeon. He gave me a 'ballpark' cost, but I wasn't aware that this number was for surgery alone (and the 'ballpark' was a rather large ballpark).

I also didn't realise that there would be additional costs for surgical materials, post operative care and the medicine I'd need etc.

What are the differences?

For surgery itself: €1500 more than originally estimated.

'Special materials' (surgical) - €500 max

Post- operative injections: €200

Medicines: €200

And a whole list of costs for 'possible' post op care (depending on resectioning) eg catheter / stoma / IV Perfusion

Now what?

I've been advised to prepare for all costs in advance. Everything must be paid when I'm there. I can't go home and pay the bill later.

Previous donors have been incredibly understanding of this update and have encouraged me to adjust the overall 'target' on the fundraiser to reflect the extra costs.

I'm anxious doing this, of course. A change like this could be misinterpreted. But I'm happy to be transparent with anyone who would like to see the emails.

Despite this hiccup:

I'm so grateful that it's possible to do all this for 10K or less.

I received messages from some Irish women over the weekend who had similar surgeries here for €20,000 +

And because Irish surgeons are not excision experts, they are still in a lot of pain and require further surgery

It's truly horrifying that 1 in 10 Irish women need this specialist care but are blocked from accessing it due to lack of expert care, extremely long waiting lists and of course - finance.

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TL;DR (Too Long Didn't Read)

I received information from the hospital abroad on Monday morning.

The actual costs are somewhat higher than the original estimation.

I've updated the amount to reflect this.

More info above.