Kiwi fundraising to get life-changing surgery in Germany because New Zealand is 'letting her die'

Sarah Wills is fundraising to travel to Germany for surgery after New Zealand doctors continually dismissed her condition.
Sarah Wills is fundraising to travel to Germany for surgery after New Zealand doctors continually dismissed her condition. Photo credit: Supplied

Projectile vomiting after drinking and eating, constant excruciating pain, and never-ending exhaustion. This is daily life for Sarah Wills as she lives with a "heavily misunderstood" health condition that leaves her physically and mentally worn out.

The 20-year-old has median arcuate ligament syndrome (MALS), a disorder that puts pressure on her celiac artery, which delivers blood from the heart to the stomach, liver, and other organs. The blood flow is restricted, but it can sometimes grab onto surrounding nerves or damage them, which causes excruciating pain when eating or drinking.

It is so debilitating for Wills that she spends most of her time in bed feeling weak and dehydrated. She also gets into confused states from experiencing malnutrition and even starts moving and talking in slow-motion.

She says New Zealand "will let me die" and doctors have continually dismissed her condition rather than give her the treatment she needs to live.

So Wills, a Palmerston North resident, has taken it into her own hands and is fundraising to travel to Germany where she can get life-changing surgery - but it comes at a hefty cost.

'I don't know how much longer my body will cope'

Wills first started complaining of abdominal pain at the age of six, where the discomfort would appear monthly and last for about a week.

Once reaching her teens, she thought the pain was endometriosis and had an operation to check - but it came back with a similar condition called adenomyosis. Doctors had missed her endometriosis, so she later had a second surgery to remove this.

But even after this settled down, Wills' pain never got better and she says each year her health got worse.

She spent her teenage years in and out of hospital, trying everything under the sun to get better. Wills has tried different diets, been prescribed a plethora of medications, seen several doctors and had countless scans.

She spent so much time getting medical treatment as a teen that in her last year of high school, she estimates she was only actually at school for about a month all year.

Wills has been in touch with a doctor in Germany and is hoping to get surgery to release her vascular compressions.

She could be over there within the next couple of months. The plan is to get more scans done and then surgery, based on how urgent her case is, which could be a few days to a week later. Wills would then spend two weeks in hospital and another week in a hotel before flying home.

Speaking with the doctor in Germany last week made her feel quite hopeful, she says.

"I've been saying to my mum that I don't know how much longer my body will cope like this or how long you can survive in my state," Wills tells Newshub.

"I'm hopeful and I'm glad I've found a doctor who knows so much about it. He's got a lot of knowledge and it's just crazy to me, because half the things he said I didn't even know about. I feel safe and I trust that he'll be able to take a lot of my pain away and fix a lot of things and know what he's doing.

"But on the other hand, I'm extremely stressed about having to go so far and about how much it's going to cost."

The final amount still isn't clear, but Wills says it's likely to exceed $50,000. The exact total is dependent on what else they find in scans and if they need to do more during surgery.

Kiwi fundraising to get life-changing surgery in Germany because New Zealand is 'letting her die'
Photo credit: Supplied

Until she travels to Germany, Wills will continue to be in constant pain from her compressions, which worsen whenever she eats or drinks. Even going for a simple walk can be excruciating.

"I describe the pain that I sometimes get as a heart attack. I've had to go to hospital before and have had a couple of checks done because of how much pain I was in to make sure that I wasn't having a heart attack," Wills says.

She also gets a sharp pain that "feels like knives" through to her back, as well as pains in her ribs, kidneys, and pelvic floor.

Wills spends most of her time in bed dehydrated and feeling very weak. Her malnutrition puts her in confused and "spaced out" states, she says, and has been told she starts moving and talking in slow-motion.

"I pass out from my heart rate being too high, but also from just being malnourished. And in the last month, I've started having really bad insomnia, which is very hard because I'm so physically exhausted but I just can't sleep. Sometimes I only get three to four hours of sleep," she says.

"The feeling of being malnourished is something I can't explain, it's terrifying. Sometimes I close my eyes and I don't know if I'll wake up because I truly feel like I'm dying.

"I can't even have a sip of water without projectile vomiting and excruciating pain. Usually people are very shocked to hear water makes me so sick."

She has to really prepare if she wants to go out and try to have a "normal night" with friends. But a lot of the time she has to take drugs just to be able to stand and tolerate it or she has to cancel plans.

"At the moment, the pain spreads everywhere, so the surgery would be done in the hopes that it would take that pain away and reduce a lot of the symptoms that I have."

'This country will let me die'

For over a year now, Wills has been vomiting up to 30 times a day.

This has been a struggle for her because doctors and specialists in New Zealand don't know a lot about compressions, she says, so they test for other conditions and resign themselves to the idea that there is nothing wrong because they can't find anything.

In the past, Wills' dietitian trialled using a nasogastric tube, which runs from your nose to stomach. But the unfortunate timing of trying this approach meant Wills was in hospital for Christmas.

Wills says she tolerated these feeds for a while, but it wasn't comfortable and still hurt. She then started vomiting them up because it was still food going into her stomach.

Next, they put the tube into the first part of her small intestine and she thought that she would be able to get enough nutrition and fluid from that to keep her stable.

But she still couldn't tolerate it. Wills had excruciating abdominal pain and vomited bile up - "which isn't pleasant". She tried different formulas in the hopes they would stay down to give her enough nutrition, but says the feeds caused more pain than eating at times.

Kiwi fundraising to get life-changing surgery in Germany because New Zealand is 'letting her die'
Photo credit: Supplied

As she was going through this ordeal, doctors started dismissing her conditions and began suggesting non-medical alternatives to help with her pain.

"The doctors that I was seeing were telling me things like, 'You just need to do yoga'," Wills says.

"I had seen quite a few specialists that would ask for things like IV fluids to control my condition called PoTS [postural tachycardia syndrome], which is when your heart rate jumps too high when you stand up, and it gets a lot worse when you're dehydrated.

"At the last appointment, my mum was nearly crying because she was so concerned about the hydration and he said, 'Well, she's still here and if she wasn't getting any fluid, she wouldn't be with us'."

Wills has gone to the Emergency Department in the past because she has been so dehydrated. On one occasion, her resting heart rate was measured at 145, but the doctor believed this wasn't high enough to do anything. He even said that Wills doesn't need her treatments. 

"[He told me] I just need to gain weight, get off my medication, that I'm not getting the IV fluids, and then told me that I haven't fallen off the cliff yet so I don't need it," she says.

"It's constant, the being dismissed, because vascular compressions are quite rare and I guess we live in a country where there's not many people here, the doctors don't want to research it, they don't want to learn about it, they look at information from years ago.

"So that's why I eventually took it upon myself to find someone else - because this country will let me die… people I know of who are currently in hospice care, they haven't been able to receive the proper treatments."

Wills says it makes her angry that New Zealand - the country she grew up and lives in - isn't giving her the healthcare she needs to stay alive. She has had to work with her therapist on letting these emotions go because they stress her out and get her worked up, even though there's nothing she says she can do about it.

"I wish there was. I don't want this for the next person and I know there's going to be many people out there like me in this country struggling to get help, and not everyone will be as fortunate as me to be able to find a doctor elsewhere to do surgery or be able to go overseas for surgery," she says.

"It is disappointing that they don't seem to want to learn about any of these things and they don't care enough."

'It would give me my life back'

Being young and watching her friends have all the typical teen and young adult experiences that she can't do has been "depressing and hard to cope with".

"I had to watch all my friends go off to university while I just got sicker and sicker," Wills says.

"My whole life, I thought I'd finish high school and then I'd go onto nursing, but then I was way too sick to do that and now I don't know if I'll ever be healthy enough to do that still."

Kiwi fundraising to get life-changing surgery in Germany because New Zealand is 'letting her die'
Photo credit: Supplied

Getting surgery would also mean relieving the constant pain she is in.

"I can't really explain the pain to people unless they're in it. A lot of people can't understand that you can be in pain 24/7," she says.

"I'm used to it to a degree, I guess, and it's more that I can't spend every single second screaming and crying from it. I would prefer to be able to eat and drink things without suffering so much."

Along with having MALS, Wills also has nutcracker syndrome, where arteries compress the left renal vein in the kidney, and May-Thurner syndrome, where arteries compress the left iliac vein in the pelvic floor.

The German doctors also want to check for another condition called superior mesenteric artery syndrome (SMAS), where two arteries compress the first part of the small intestine and block food from being able to get in.

Wills has never had a scan for this because it is more specialised. It is also the most severe compression out of them all and has a mortality rate of 33 percent.

Her main condition is the connective tissue disorder hypermobile Ehlers-Danlos syndrome (EDS), meaning there are problems with her collagen, which is essentially the glue that holds the body together.

It is believed her compressions have to do with EDS.

Getting surgery in Germany would be life-changing for Wills, she says, but the high cost and the amount of time she has to spend over there are causing her stress, so she has started a Givealittle fundraiser to help cover some funds.

"I think [surgery] will save me. I don't know how I would continue living like this. I'm obviously not getting enough food or fluid or anything really," she says.

"It would give me my life back to be able to go out and enjoy things more and not have to constantly worry about the consequences that come with things."