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/

We’re 17 Years Old!

happybirthday-2015

It’s unbelievable but the idea for Cushing’s Help and Support arrived 17 years ago last night.  That’s a long time for anything online.

I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m making some helpful differences in someone else’s life!

The message boards are very active and we have weekly online text chats, occasional live interviews, local meetings, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Of course, we now have a Facebook page and 2 groups.  Both are secret, so if you want to join, please email  or PM me for an invitation.

Other sites in the Cushing’s Help “Family”

 

maryo colorful zebra

Sloan Kettering (New York City) Clinical Trials & Research

 

Clinical trials are research studies that test new treatments to see how well they work. Our Pituitary and Skull Base Tumor Center is leading clinical trials investigating new medical therapies for patients with Cushing’s disease and acromegaly. They are also involved in quality-of-life studies aimed at improving long-term follow-up care for patients who need it.

Our experts can help determine which clinical trials are right for you. The following clinical trials for pituitary tumors are currently enrolling new patients.

To learn more about a particular study, choose from the list below. For more information about our research and clinical trials, call us at 212-639-3935, or talk with your doctor.

High cortisol: Symptoms and signs

When we become stressed out bodies release cortisol – the stress hormone – which helps us cope with challenges. Cortisol’s role is to convert protein into energy by releasing glycogen and counteract inflammation. When cortisol is released in the body temporarily, this is okay and won’t have long-lasting detrimental effects to health as it is a natural response to a stressor. But when cortisol levels remain high chronically it can eventually begin to tear your body down thus causing health complications. This is why numerous health experts recommend the reduction of stress as much as possible because in the long run it can harm our health.

High cortisol levels over the long term can destroy healthy muscle and bone, slow down healing, impair digestion, metabolism and mental function, and weaken the immune system. Additionally, adrenal fatigue has been linked to numerous other health conditions including fibromyalgia, hypothyroidism, chronic fatigue syndrome, arthritis, premature menopause, and many others. High cortisol levels are also associated with many unwanted symptoms which we will outline below.

High cortisol symptoms

If you’re concerned about your cortisol levels, the following signs and symptoms associated with high cortisol levels can alert you and prompt you to make the necessary changes in order to reduce cortisol levels.

  • Unexplained weight gain
  • Skin symptoms including acne, skin infections, lesions, thin-appearing skin, bruising, growing facial hair, and reddish purple streaks on skin
  • Muscle and bone symptoms like a deep pain in the bones, weak muscles, chronic backaches, increased risk of bone fractures
  • Gender specific changes such as women developing male-pattern hair growth, irregular menstrual cycles, low libido, infertility
  • Neurological symptoms such as depression, irritability, headaches, chronic fatigue, and anxiety
  • High blood pressure (hypertension)
  • Poor sleep or lack of sleep
  • Swelling of hands and feet

If you notice any of the above symptoms, you may want to have your cortisol levels checked to confirm diagnosis. Living with high cortisol levels over the long term can have detrimental effects on a person’s health. Treating high cortisol as soon as possible can lower the risk of long-term health problems.

Causes of high cortisol

There are two main causes of high cortisol: Chronic stress and more rarely, Cushing’s disease. Cushing’s disease is caused by a hormone-secreting tumor on the adrenal gland which results in the release more cortisol than required.

Living with chronic stress also leads to high cortisol because the release of cortisol is a natural response from the body when it is stressed. The hypothalamic–pituitary-adrenal [HPA] axis is what regulates the timely release of cortisol during acute stress, but when stress becomes chronic the feedback from the HPA becomes damaged and so cortisol continues to be released.

Conditions that can contribute to chronic stress and high cortisol include:

  • Depression
  • Panic disorder
  • Generalized anxiety disorder
  • Post traumatic stress disorder (PTSD)
  • Anorexia nervosa
  • Bulimia nervosa
  • Alcoholism
  • Diabetes
  • Severe obesity
  • Metabolic syndrome
  • Polycystic ovary syndrome (PCOS)
  • Obstructive sleep apnea
  • Working in shifts
  • End-stage kidney disease
  • Chronic pain

Tips to lower high cortisol

Here are some tips that can help you lower your high cortisol levels and thus prevent long-term health problems associated with high cortisol. [MaryO’Note:  These will not work if you have active Cushing’s!    You must remove  the source of your Cushing’s first.]

  • Eat a well balanced meal with plenty of fruits and vegetables, avoid sugars, consume low glycemic index foods, avoid processed foods, eat a wide variety of health foods to ensure you receive all essential vitamins and nutrients
  • Exercise on a regular basis
  • Take time out of each day to relax – listen to music, meditate, pray, perform your favorite hobby, anything that promotes relaxation
  • Take up yoga or tai chi
  • Ensure you are getting adequate sleep
  • Drink tea
  • Watch funny videos or hang out with a funny friend
  • Go for a massage
  • Do something spiritual – attend a service
  • Chew gum
  • Limit caffeine intake
  • Stretch

By incorporating these helpful tips into your life you will find that your high cortisol symptoms begin to diminish and your overall health begins to improve.

From http://www.belmarrahealth.com/high-cortisol-symptoms-signs-look/

 

16 Years Old!

happybirthday-2015

It’s unbelievable but the idea for Cushing’s Help and Support arrived 16 years ago last night.  That’s a long time for anything online.

I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m making some helpful differences in someone else’s life!

The message boards are very active and we have weekly online text chats, occasional live interviews, local meetings, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Of course, we now have a Facebook page and 2 groups.  Both are secret, so if you want to join, please email  or PM me for an invitation.

Other sites in the Cushing’s Help “Family”

 

maryo colorful zebra

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