Kiko Matthews, Pituitary Cushing’s Survivor Solo Rows Atlantic to Raise £100K For Hospital That Saved Her Life

Adapted from an article at http://metro.co.uk/2017/07/24/ex-teacher-is-rowing-across-the-atlantic-solo-to-raise-money-for-hospital-who-cured-her-brain-tumour-6773756/

You’d imagine if you’d never set foot in a rowing boat before, apart from, say, an abortive attempt in a boating lake age 9, that you would set yourself a fairly tame goal for your first challenge when you did finally take up the sport.

Not so Kiko Matthews. The science teacher-turned-paddle board instructor and adventurer, this time last year a total beginner in a rowing boat, set herself the challenge of rowing solo across the Atlantic – before she’d actually picked up an oar.

Not only does she plan to raise £100,000 for King’s College Hospital with the row – after they saved her life when she was struck with a rare disease – but she plans to break the female world record for a solo Atlantic crossing while she’s doing it.

The previous record for a woman rowing solo across the Atlantic is 56 days, the male record is 35.

Kiko plans to do it in 45, taking 11 days off the current female record.

Her determination and dedication indicate that she’ll do it too.

She has been training daily for 7 months since she made the vow (she hadn’t even been drinking when she made it, she tells me) in order to smash the record for the 3,000-mile trip.

On the way she will encounter storms, freezing nights, scorching hot days, sharks – and a whole lot of solitude. ‘I have to be skipper, medic, my own best friend – and, sometimes, no doubt, my own worst enemy,’ she says.

She’ll have an emergency button in case of crisis — and not much else, besides her equipment and her ego.

A rigorous regime of on-land and on-water rowing, circuits, weights and cross-training with cycling and running is preparing her for the 16 hours a day of rowing she’ll have to put in to make the record crossing.

The months of 4am wake-up calls are, as you’ll see from her Facebook and Instagram posts, made somewhat easier by incredible sunrises, sunsets and glass-like oceans, but they are nonetheless gruelling.

However, they will have set her up for what will be six sleep-deprived weeks where she will try to shoehorn what sleep she can – a four-hour chunk and a few cat naps throughout the day – into the eight hours she has to eat and rest when she is not rowing.

No matter how much work she is putting in, the challenge is ambitious — but her chances are improved immeasurably not only by her tenacity (you have to meet her to believe it) but the fact that the boat she is using for the crossing is the same one that was used by the current male solo Atlantic World Record holder, Charlie Pitcher.

He set the new record for solo male crossing in 2013, taking 35 days to row the 3,000 miles in the carbon-hulled, 6.5m ocean rowing boat Soma of Essex.

His boat was the first of its kind to have the rower facing backwards into the waves rather than rowing forward, which made the boat far more aerodynamic and helped him to shave 5 days off the previous 40-day record.

And, as Kiko says, ‘when you’re in the middle of the Atlantic with nothing for miles either side, you don’t really need to see where you’re going anyway.’

Now, Pitcher has not only lent Kiko his record-breaking boat, but he’s helping to train her too. And, having been exposed to the whirlwind that is Kiko Matthews, he is confident she can achieve her goal.

‘I met Kiko at a charity function we were both involved with and we just hit it off immediately, like we had known each other for years,’ he says. ‘I wanted to lend her the boat because I believe she has what it takes to smash this, and not many others do,’ he says.

‘To break a tough world record like this, you need all the right tools in your bag. Kiko has the full house.’

The mammoth physical undertaking is all the more impressive when you understand how far Kiko has come health wise.

The once fit young woman was so rapidly debilitated by this mystery disease she had to drag herself upstairs on her hands and knees, yet doctors could not find out what was wrong.

Unlike most people with Cushing’s, who experience the condition worsening over a long period, sometimes years, the size of Kiko’s tumour meant the symptoms were aggressive and dramatic.

As she deteriorated, she was quickly referred to King’s College Hospital where she lay for a month believing she would die before doctors were able to diagnose Cushing’s.

Even then, her potassium levels were too low for her to survive surgery so she was taken to intensive care unit until she was strong enough for doctors to operate and remove the tumour.

Kiko says now that those were her darkest times. ‘I couldn’t see, I couldn’t speak properly or think. I was too weak to move,’ she says.

Ultimately, the disease could have proved fatal. But with the tumour finally removed, the levels of cortisol in her blood reduced from 3,000 mcg/dL to 30 mcg/dL in three days.

Within five, the brain fluid stopped dripping from her nose, the swelling in her body had gone down, her memory returned and diabetes and other symptoms vanished.

Soon after her recovery, Kiko left her role as a science teacher to set up SupKiko, a company teaching paddle boarding, and a charity, The Big Stand, that gives opportunities to young people and those with mental health problems.

While she still leads paddle boarding groups, most of her time is now spent training for the Atlantic crossing, which sets off from the Canary Islands in January.

….

Ironically, both the challenge and fundraising attempt for KCH has added poignancy now.

A few months into her training, Kiko began to feel ‘strange’ symptoms and, as they developed, she began to suspect the return of Cushing’s.

An MRI detected a 3mm tumour on her pituitary gland, confirming her fears, and she found herself back at King’s where Kiko says that the doctors, who remembered her aggressive and rare case 8 years ago, have been ‘fantastic’.

She is booked for surgery on 1 August when surgeons will go in through her nose to remove the tumour quickly so that she can continue her training.

‘With the help of an amazing team of nurses and doctors, I’ll be 100% fine for my row in January. I’ll make sure I am,’ she says.

‘The tumour returning has only made me even more determined to break the record and raise the money,’ she says.

‘The doctors will have saved my life not once, but twice.’

Read the entire article at http://metro.co.uk/2017/07/24/ex-teacher-is-rowing-across-the-atlantic-solo-to-raise-money-for-hospital-who-cured-her-brain-tumour-6773756/

A Retrospective Review of 34 Cases of Pediatric Pituitary Adenoma

Abstract

Purpose

The purpose of this paper is to study invasiveness, tumor features and clinical symptoms of pediatric pituitary adenoma, and to discuss some inconclusive results in prior studies.

Methods

We retrospectively reviewed 34 cases of children (<20 year-old) who were pathologically diagnosed with pituitary adenoma and surgically treated from 2010 to 2017. Data of general information, clinical symptoms, invasive behaviors, surgery approaches, and tumor features were collected and analyzed.

Results

Sixteen boys and 18 girls aged from 12 to 19 years old were included. Prolactinoma was most suffered, followed by GH-, none- and ACTH-secreting pituitary adenoma. Invasive behaviors were observed frequently and suprasellar extensions were most found. Macroadenoma account 70% of all cases. Meanwhile, unlike prior studies, a significant raise of incidence on invasive tumor and pituitary adenoma apoplexy were observed. Craniotomy and transsphenoidal surgery were both applied with zero mortality. Nine cases occurred with transient hypopituitarism and diabetes insipidus. Three cases of tumor recurrence received secondary surgery or radiotherapy.

Conclusions

Invasive behaviors were more frequent than previous prediction. Craniotomy is worth considering for total tumor removal. Pituitary adenoma apoplexy needs further studies since its different features between children and adults in present study. Specialized care and teamwork of neurosurgeons, pediatricians, and endocrinologists are important.

Keywords

Pediatric pituitary adenoma Invasion Pituitary apoplexy Transsphenoidal surgery 

Science Teacher Receives Support After Cushing’s Disease Diagnosis

I find it amazing that it’s newsworthy in this day and age for anyone receiving support after a diagnosis.  Of course, a diagnosed person should be getting support as a matter of course.  If she had cancer, everyone would be all over this.

For Kara Murrow, the most rewarding moments as a teacher come when students learn about animals in the classroom. So it’s difficult for the Bonham Elementary fifth-grade science and social studies teacher to be away from school while she prepares for surgery.

“I enjoy it, and I know my kids enjoy the class and enjoy science because of it,” Murrow said. “With the science club I do after school once a week, the kids get upset when it gets canceled because of meetings. Not having it now is upsetting, too.”

Murrow was diagnosed this month with Cushing’s disease, a condition that develops when a tumor on the pituitary gland causes it to secrete too much adrenocorticotropic hormone. Murrow, who moved to West Texas from Arizona three years ago, said she has received support from Midland ISD employees and others in the local community.

Murrow’s mother, Louise Gonzalez, also appreciates Midlanders’ concerns for her daughter.

“People in Midland have been wonderful, considering how new we are to the area,” Gonzalez said. “The school district sent out the GoFundMe page and there’s been an outpouring of support for that. People at my church always ask me.”

Murrow’s family is collecting donations from the website GoFundMe to cover the costs of medical and travel expenses. Murrow and her husband, Kai, recently spent money on hospital stays connected to their 4-year-old son’s food sensitivities.

“They’ve been paying off those bills and doing OK until this came,” Gonzalez said. “Plus, she’s been going to the doctor about this. Because Cushing’s is so rare, doctors don’t recognize it.”

Murrow was diagnosed with the disease after medical professionals discovered a tumor on her pituitary gland. For six years, she experienced symptoms — including weight gain, dizziness and headaches — but said doctors couldn’t determine the cause. Murrow was thankful when she received an answer.

“It was a huge relief to finally have a diagnosis and know that I wasn’t crazy or making things up,” Murrow said. “It’s weird to be excited about a brain tumor. It’s a relief to know what was happening and that I have a solution.”

Murrow traveled this week to Barrow Neurological Institute in Phoenix, where she’s scheduled to undergo surgery to remove the tumor. Though Murrow said recovery lasts several months, she hopes to return to the classroom next school year.

Jaime White, fourth-grade language arts and social studies teacher at Bonham, said both staff and students miss her presence. She said Murrow expresses concern for her students during her time away.

“She’s worried about how kids will do on the STAAR [State of Texas Assessments of Academic Readiness],” White said. “She doesn’t want them to think she abandoned them. The disease has to take center stage.”

At school, White said she noticed her colleague’s dedication toward helping her students understand science.

“She’s hands-on,” White said. “When it comes to science, she’s always making sure the kids are doing some sort of experiment. She wants to make sure the kids grasp it.”

Murrow teaches students about animals through dissections and presentations. Before she became a teacher nine years ago, she coordinated outreach programs at an Arizona zoo.

When she came to MISD, Murrow saw an opportunity to generate enthusiasm about science. She launched an invite-only science club for fifth-graders who show interest in the subject.

“I started it because there wasn’t really anything,” Murrow said. “They have tutorials for reading and math. There’s not a lot kids can do with science after school. They get science in the younger grades, but the focus is on reading and math. Science is something kids really enjoy.”

Though Murrow is disappointed about not being able to facilitate the club, she recognizes the importance of her upcoming surgery. She’s happy her mother, husband and two children will be in Phoenix for support.

“I hope that it will bring about a sense of relief to all the symptoms I’ve been dealing with and provide a chance for myself and my family to continue along with a full life,” Murrow said.

From http://www.mrt.com/news/local/article/Science-teacher-receives-support-after-11026581.php

What I’m doing for Rare Disease Day

rare disease day

 

Each and every day since 1897,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards.

Adding to websites, blogs and more that I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

~~~

Today is Rare Disease Day.

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency…

If you’re interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/

 

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What You Should Know About Pituitary Tumors

Ask the Experts

Igor Kravets, MD
Endocrinologist, Assistant Professor Division of Endocrinology,
Diabetes and Metabolism
Stony Brook Medicine
Raphael Davis, MD
Neurosurgeon, Professor and Chair Department of Neurosurgery
Co-Director, Stony Brook University Neurosciences Institute

 

Where do pituitary tumors form?
Dr. Kravets: A pituitary tumor is an abnormal growth of cells in the pituitary gland, which is a small, pea-sized organ located in the center of the brain, behind the nose and eyes. The pituitary is a “master gland” of the body; it produces many hormones that control other endocrine glands and certain functions of the body.
Are they mostly benign or malignant?
Dr. Davis: Most pituitary tumors are benign (non-cancerous). However, because of the location of the pituitary gland at the base of the skull, pituitary tumors can cause problems since they grow upward. Eventually some will press against the area where the optic nerves intersect, causing vision problems. They can also cause hormonal imbalance.What causes pituitary tumors?
Dr. Kravets: No one knows for sure what causes pituitary tumors. About one to five percent of pituitary tumors occur within families. Most are not inherited, however there are certain, rare, inherited conditions such as multiple endocrine neoplasia type 1 (MEN 1), that carry a higher risk of pituitary tumors.

What are the different types of pituitary tumors?
Dr. Davis: Adenomas are benign tumors that develop on the pituitary gland behind the eyes. These tumors can change levels in hormone production or cause vision loss. Craniopharyngiomas are benign tumors that develop at the base of the brain where it meets the pituitary gland. They commonly affect children 5 to 10 years of age, but adults can sometimes be affected in their 50s and 60s.

What are the symptoms?
Dr. Kravets: Symptoms vary depending on the type and size of a pituitary tumor but not all pituitary tumors cause symptoms. Many pituitary tumors are not diagnosed until symptoms appear. Some pituitary tumors are found incidentally on brain imaging obtained for a reason unrelated to the pituitary. Certain symptoms may develop when pituitary tumors grow so large that they exert pressure on surrounding structures.

Such symptoms include:
• Changes in vision (particularly loss of peripheral/outer edge vision)
• Headache

Other symptoms are related to either deficiency or excessive production of certain hormones. Common symptoms caused by such hormonal disturbances include:
• Menstrual cycle changes (irregular or lack of menstrual periods
• Erectile dysfunction or loss of sex drive
• Weight changes
• Production of breast milk by a woman who has not given birth
• Accelerated or stunted growth in a child or teenager
• Growth of the hands, feet, forehead and jaw in adults
• Development of a round face, a hump between the shoulders or both

How is a pituitary tumor diagnosed?
Dr. Kravets: An endocrinologist will ask you about the symptoms you are experiencing, and about your personal and family health history. He or she will perform a physical exam and order tests of your blood and urine. A magnetic resonance imaging (MRI) scan or computerized tomography (CT or CAT) scan may also be ordered to obtain detailed images of the brain and the pituitary gland. In rare instances, a biopsy (surgical procedure to remove a small sample of the tumor for examination) is required.

What treatments are available?
Dr. Davis: Treatments may include surgery, radiation therapy or medication. Transsphenoidal surgery is surgery performed through the nose and sphenoid sinus (located in the very back part of the nose, just beneath the base of the brain) to remove a pituitary tumor. It can be performed with an endoscope, microscope or both and is a team effort between neurosurgeons and ear, nose and throat (otolaryngology/ENT) surgeons. Radiation therapy uses high-energy x-rays to kill the tumor cells and is recommended when surgery is not an option, if the pituitary tumor remains, or if the tumor causes symptoms that are not relieved by medicine.

Why choose Stony Brook?
Dr. Kravets: Our Pituitary Care Center provides access to all of the coordinated expert care you need in one location, close to home — which can make the course of your treatment easier. Our team includes specialists from endocrinology, neurosurgery, otolaryngology (ENT), radiation oncology, neuropathology, neuroradiology, neuro-ophthalmology, and patient education and support.

To make an appointment with one of our Pituitary Care Center endocrinologists, call
(631) 444-0580. To make an appointment with one of our Pituitary Care Center neurosurgeons,
call (631) 444-1213. To learn more, visit stonybrookmedicine.edu/pituitary.

All health and health-related information contained in this article is intended to be general and/or educational in nature and should not be used as a substitute for a visit with a healthcare professional for help, diagnosis, guidance, and treatment. The information is intended to offer only general information for individuals to discuss with their healthcare provider. It is not intended to constitute a medical diagnosis or treatment or endorsement of any particular test, treatment, procedure, service, etc. Reliance on information provided is at the user’s risk. Your healthcare provider should be consulted regarding matters concerning the medical condition, treatment, and needs of you and your family. Stony Brook University/SUNY is an affirmative action, equal opportunity educator and employer.

From https://www.stonybrookmedicine.edu/patientcare/pituitarytumors

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