Woman urgently needs surgery
The key here is to listen to your body and don’t stop speaking up. Don’t stop asking questions. Don’t stop your research. Don’t take no for an answer. Pam Coburn
mum in hospital.
“Pam gets constant infections down her tube which is how she gets fed. To get that fixed she has to go to the Emergency Department at Tauranga Hospital,” says Jon.
“One day I dropped her off at ED at 9am and picked her up at 6pm after she’d had the five-minute procedure. That night there was an accident on State Highway 2 between Katikati and Athenree so we had to turn back to Tauranga, go over the Kaimai, through Te Aroha and Waih¯ı, and finally ended up getting home at 11pm that night.”
Jon says they went to see a rheumatologist in Auckland.
“He diagnosed her and put in referrals to a private specialist in Hamilton otherwise we wouldn’t have got anywhere,” says Jon.
“After a few hospital admissions, many doctors’ visits and self-funding specialists’ appointments, in September 2023 I found out I have EDS (Ehlers-Danlos Syndrome),” says Pam.
“I have been deteriorating fast since January 1, 2024, with more symptoms and increased older symptoms added to what I was already experiencing. “
This meant she had long bouts of being bedridden, and very little energy on days that weren’t as bad.
“This led us having to stop home schooling and send the boys to school. I now spend the time they’re at school sleeping, resting or both.”
On March 18, Pam received the specialist’s report.
She says she always knew there was more going on and kept pursuing answers.
“The key here is to listen to your body and don’t stop speaking up. Don’t stop asking questions. Don’t
stop your research. Don’t take no for an answer.”
She says her quality of life has been greatly reduced.
“I’m in a huge amount of pain, all the time. I have chronic fatigue,
nausea and can no longer manage anything orally. I have a pump for feeds and fluids through my NJ [nasojejunal tube].”
Pam’s mum Joy Veen and youngest sister Renee Taylor are taking over the task of advocating for her now.
“They are in control of the fundraising and media attention. I have reached the peak of being able to do anything more than function. It seems, once I’d received my diagnosis, my body finally let go of the push, and ‘gave in’ to the symptoms.”
She has found herself sleeping more the past week than she has in a long time.
The diagnosis, so far:
“My scans have been reported on by a private specialist in New Zealand and they have found I have Nutcracker Syndrome and May Thurner Syndrome,” says Pam.
“I am going to get further opinions from specialists in Germany and Spain costing about $1000 combined. These both will include a detailed report and their recommendations because it is possible there is more going on.”
Nutcracker Syndrome is a compression of the left renal vein.
“I have a severe compression. And it’s caused my body to re-route blood that would otherwise go to the kidneys into my ovaries and uterus.”
Consequently Pam’s left kidney is enlarged, and there is a risk of kidney damage leading to kidney failure if untreated.
May Thurner Syndrome is a compression of the let iliac vein. This causes a disruption in blood flow and could lead to deep vein thrombosis and a pulmonary embolism.
Both of these Nutcracker and May Thurner syndromes are life threatening. “They are also a likely cause of my inability to eat,” says Pam.
She is hopeful that surgery could lead to her being able to eat and drink again, and for the feeding tube to be removed.
“Even though I’m on a feeding tube, and taking medications to help store fat, I am struggling to gain weight.”
In three months she has put on a kilo and a half.
“I’m sitting at a BMI of 16. I cannot risk losing any more weight, as surgery and the recovery from surgery becomes very difficult.”
Surgery needs to happen sooner rather than later. The cost will be about $200k with airfares, postoperative care and further recovery, physiotherapy, and tests in NZ privately on return.
Renee says getting the funds together fast, is key.
“That means I can have surgery sooner, rather than later,” says Pam.
Having surgery sooner, means a better chance of recovery, with less chances of more going wrong.
“We need all the help we can get,” says Renee.
To help Renee raise funds for Pam’s surgery and to give her a second chance at life, please go to her Givealittle page — Pam urgently needs life-saving surgery overseas.