Genuine Support You Can Feel

“Thank you for letting me talk in words that I have a hard time saying out loud. I’m not in the mood to talk with my family or friends. I think I just want to be heard and to know I am not the only one who is going through this...”

Childhood Cancer…Research…the Need for a Cure

Saturday, November 24th, 2012 at 1:16 pm  
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A mother noticed that her six year-old son’s eyelids were not closing and when he walked, he was slightly off balance.  A few days later, his parents’ worst nightmare became a reality; they were told that their son has a brain tumor. His diagnosis did not come easy. Various pathologists could not give a definitive answer as to the type of cancer much less its Grade (I-IV). The eventual final diagnosis came from one of the world’s leading authorities on brain tumors. It was an Anaplastic Astrocytoma (Grade III), the most common type of brain tumor in children between the ages of 5 and 9 years old. The child had undergone a series of radiation and chemotherapy agents. He appeared to respond well to some treatments, but his tumor’s suppression was always short-lived, with the Anaplastic Astrocytoma always returning back to rapid growth.

Finally, a possible cure may be at hand –a drug that shown early evidence in adult trials to be effective at stopping the activity of a gene responsible for driving the growth of certain tumors including this child’s tumor. There is only one problem. The child was denied access to the drug. There are no remaining spaces available for him in phase I pediatric trial and the pharmaceutical company would not allow the child access to their drug under the FDA’s Expanded Access Compassionate Use program for patients desperately seeking a last chance for survival. While the drug was the final possibility, the drug is being withheld from him.

According to the FDA, expanded access – sometimes called “compassionate use,” is the use of an investigational drug outside of a clinical trial to treat a patient with a serious or immediately life-threatening disease or condition who has no comparable or satisfactory alternative treatment options. FDA regulations allow access to investigational drugs for treatment purposes on a case-by-case basis for an individual patient, or a group of patients with similar treatment needs who otherwise do not qualify to participate in a clinical trial. The investigational drug may be effective in the treatment of the condition, or it may not. They also may have unexpected serious side effects – a risk the child’s parents were willing to take.

Typically, compassionate use access is not given to drugs in Phase I tests. These safeguards are in place to avoid exposing patients to unnecessary risks. The risk to the pharmaceutical company in allowing compassionate use access, is that given the early phase of testing the drug for safety and toxicity, there are possibilities of an adverse event or unanticipated side effect outcome experienced by the patient. Even though the patient is not being handled as one of the tested subjects, the FDA will know of the outcome and the drug’s progress potential is may be hindered if not outright stopped. The risks are too great for both clinical and business development reasons. The policy of most pharmaceutical firms is that they will not authorize expanded access to clinical trials, even for compassionate use by patients seeking a last chance.

So, is there a “bad guy” in this child’s story, someone wearing a black hat, that we can point fingers at and a heap of blame? Not really. The pharmaceutical company stipulated their policy of not permitting expanded access to drugs undergoing clinical trials for compassionate use, regardless of the circumstances of any patient seeking it. Likewise, the FDA does not permit expanded access to Phase I trials. The business and medical reasons for denying the child access to the investigational drug are deemed as rational and prudent. The drug is not yet proven to be safe and non-toxic in children. Its efficacy in curing targeted cancers is still be determined, even if it passes through Phase I testing. And yet, this logic still begs the question: what does anyone, including this child, have to lose? Per this child’s father, I suppose that I understand why pharmaceutical companies and the FDA will not allow my son access to the trials for statistical integrity, risk, and even business development reasons. Yet, I am here offering my son as our last hope, but also as a test-subject opportunity for this pharmaceutical company to hopefully develop a treatment for this disease with no current cure whatsoever. If my son cannot be saved, maybe he can save other kids in the future. Is that too much to ask?”

Are there any other possibilities for this child, specifically for his type of cancer? The answer is no and the reason is that few, if any treatments reach clinical trials for children’s cancer. Cures for childhood, adolescent, and young adult cancers are basically side bets. They are not the driving force behind drugs such as this one.

Childhood cancer is classified as a rare disease. The FDA classifies any disease as a rare disease if its occurrence is less than 200,000 patients per year. Rare diseases are small markets for drug companies, not worth the cost and effort. Researching, discovering and carrying prospective new cures through all the phases of a clinical trial are extremely costly, over $1.3 billion, on average per drug. For large pharmaceutical companies, childhood cancer does not make business sense. The potential revenue returns do not justify the investment and risk.

Frustration is growing for parents who witness a science culture where promising discoveries generally not only reach dead ends, but typically never get attempted for advancement. Throughout academia, the NIH, and most foundations, the system of honors, grants and tenure, continues to rewards basic discovery research, not the ensuing requirements needed to shuttle potential breakthroughs into (new diagnostics or) drugs. The child’s father comments, “Things need to change at both the NIH and foundations that fund research. The funding of just research, while appearing as major steps forward, is not sufficiently helping the advancement of cures for kids like my son. I appreciate the work being accomplished, but when are we going to see some real returns for all the hundreds of millions of dollars spent? Why do parents still have to go begging for researchers to help their kids rather than physicians with cures?”

Join us 11/27 @ 8pm ET for #treatdiarieschat and meet TNCI.org The Nicholas Conor Institute – a 501(c)(3) not-for-profit medical research organization that concentrates exclusively on cancers common to children, adolescents and young adults.  We will be tweeting with Founder and CEO – Beth Anne Baber.

Scleroderma – The Disease That Turns Your Body to Stone

Friday, November 23rd, 2012 at 1:47 pm  
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Unless you are personally affected by scleroderma, such as a patient or the family member or a friend of someone with the disease, it’s highly unlikely that you have ever heard of it. “Scleroderma” comes from the words: “sclero” meaning hard and “derma” meaning skin. It is a chronic disease where an overproduction of collagen disturbs a person’s connective tissue and autoimmune system, essentially turning one’s body to stone. The disease affects about 300,000 people in the United States, and women are three to four times more likely to develop it than men.

Scleroderma symptoms vary greatly in each person. Some people develop visible symptoms, such as tight, hardening skin, where everyday tasks like open doors or driving your car can become unbearable. Other people may experience “invisible” symptoms, affecting internal organs, like the heart, lungs or kidneys.

Many people living with scleroderma can also experience these other symptoms or overlapping conditions:

 

  • Raynaud Phenomenon. About 90 percent of patients experience this vascular response to changes in temperature or stress. The result is a person’s fingers or toes turning blue or white because of the lack of blood flow.
  • Sjogren Syndrome. This symptom is characterized by an unusual dryness in the mouth or eyes. The excessive dryness can cause problems speaking or swallowing.
  • Pulmonary Arterial Hypertension. An increased blood pressure in a person’s lungs can cause strain on his or her heart, while making every breath difficult.

 

Currently, there are no medications or treatments available for scleroderma. There are only medications available to help treat and manage the underlying symptoms.

The Scleroderma Foundation has 24 chapters and more than 150 support groups across the United States. We are committed to helping people improve their quality of life while battling this horrible disease. The organization also is one of the leading nonprofit funders of research to help find the cause and cure of the disease.

We hope you will join @scleroderma for the weekly #treatdiaries chat at www.tweetchat.com at 8 p.m. Tuesday, Dec. 4! We are on a mission to educate as many people as we can about this disease, and help them access the support and education resources to manage living with scleroderma.  We also encourage you to join TreatmentDiaries.com and connect with 1,000′s of individuals living with this condition in search of support and treatment insight.  It’s free, anonymous and only takes seconds to join!

If you’d like to learn more about scleroderma, please visit www.scleroderma.org or call (800) 722-HOPE (4673).

Experience of an Organ Transplant – The Golden Ticket…

Saturday, November 17th, 2012 at 9:53 am  
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For the 18 years I have lived with a new liver and in my role as a community educator for an organ procurement organization (OPO), many have asked, “What is the transplant experience like?”  While the experiences can vary among individuals, when asked, I go back to a favorite childhood movie, “Willy Wonka and The Chocolate Factory,” (Gene Wilder, 1972).  For those who don’t remember the movie, it opens with Charlie, a desperately poor schoolboy living in a small ramshackle London home with his mother,  four bed-ridden grandparents and little hope that his life will ever be better.

Many candidates and their families experience the similar feeling of helplessness when placed on the waiting list, knowing that only the “Gift of Life” offers hope for the future.  Deep down there is always the fear and uncertainty of waiting until, or if, “The Call” comes with news an organ is available.  After all, 18 people die every day in the United States waiting for a transplant.

Charlie’s version of “The Call” comes in the form of a “Golden Ticket” inside a candy bar he purchased with money found in a storm drain. The ticket promises an adventure by granting him admission to the previously hidden factory where never-before-seen Willy Wonka makes his world famous candy.

Entering the factory, like getting a transplant, begins a journey full of magical wonders, complicated machines, experiences that disorient and confuse, and at times terrifying unknowns.   At the end of the movie, Charlie, Willy and Grandpa Joe, board a glass elevator that races to the roof and just when Charlie thinks they are going to die, it breaks through the glass ceiling revealing the factory and the city below.  As Charlie is gazing out in wonder at the surroundings, Willy reveals that Charlie won the contest to be his heir to the chocolate empire.

The utter joy on Charlie’s face when he understands he can pursue his dreams  and care for everyone in his life, is exactly how I felt when my liver transplant shattered  the ceiling limiting my life.  This analogy is the closest I have ever come to describing the transplant experience.   Like Charlie, my dream for a new life was fulfilled by a complete stranger.  As Charlie becomes heir to a candy making legacy, we, as recipients, are entrusted with our donor’s legacy through the “Gift of Life.”

“For candidates and recipients, our heroes aren’t candy makers.  The real heroes and most important individuals in the process are the donors and their families. Without their gift there would be no legacy, no hope and more that 28,500 people would not get a second chance each year in the United States.”

As a staff member at the organization responsible for facilitating this gift, I get to witness first-hand the dedication of my co-workers accomplishing all the jobs necessary for the more than 116,000 patients on the transplant waiting list to have a second chance.  Personally, my biggest honor is meeting and working with donor families.  For many, volunteering with their local organ procurement organization is a way to honor their loved one’s gift.

Their support is invaluable as we work to dispel misconceptions that prevent Americans from choosing to Donate Life and joining their state donor registry. Donor family members telling an audience, “the hospital did everything in their power to save my daughter’s life,” can reassure somebody skeptical of the treatment registered donors receive in Emergency Rooms. That same mother talking about her daughter’s open casket funeral removes concerns that donation limits funeral options.

Ultimately, individual experiences vary, but the reality is that organ, eye and tissue donation is an opportunity for something good to come out of a tragedy.  As many as eight lives are saved and more than 50 can be healed through tissue donation, and donor families can hold on to this knowledge and in days to come realize the impact of a loved one’s gift.  As a recipient, with two kids born post-transplant,  I encourage those who have questions to visit www.donatelife.net to learn more about donation and discover how to register as a donor in your state.

TreatmentDiaries.com is a great place to connect with those awaiting a transplant, post transplant and those who care for anyone with a medical condition.  Join us for our weekly #treatdiarieschat w/ @LifelineofOhio and @treatdiaries on 11/20 @8pm ET!  www.tweetchat.com

The Most Important Lesson I’ve Learned from Mr. Rogers – Parenting Beyond Disabilities!

Friday, November 2nd, 2012 at 9:26 pm  
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In our job as early interventionists, we work with children and their families as long as they need us from age birth to three years old.  After three years old, in most, but not all cases, they transition to a public preschool program that offers therapies and instruction. Three years of working with a child and their family often seems to go very quickly and the bond formed is pretty outstanding.  We get the opportunity to become an extension of the family and are in tune with daily routines, extended family and friends, struggles, joys, dreams, and even the quirks of the family dog!

Some people work three years on a building project, a financial deal, or meeting a long -term sales goal. We get to work on building a happy child that can play, learn, and be safe out of their home and parents who feel comfortable with their child trying these new skills, without their parents’ presence, for often the first time.  If both occur, our shared “masterpiece” is complete.

It’s a very emotional time when we “lose our kids.” Don’t get me wrong; it’s not all triumph and happy tears along the way. We have seen too many tantrums to count, have been hit, bit, and thrown up on.  We’ve wracked our brains at bedtime trying to think of that perfect toy or object to motivate a certain child or how to chose the right words to get through to a parent that doesn’t yet value following through with suggestions we leave behind. But these things pale in comparison to the pride that is felt when that child says their first meaningful word instead of screaming in frustration, can take those steps to get the toy themselves, or can touch their parent’s face to show love and appreciation in their own way.

When the time comes to transition a child, I share some of the emotions of the parent, but in a different way I am sure. I find myself asking appropriate question to the skills I teach as a physical therapist like, did I think of how they’ll do getting around the classroom?  In and out of their chair? To the cafeteria?  And I find myself asking myself questions unrelated to my “PT role.” I wonder how the child will do on the bus ride? Will they be scared? Will they like new friends or will they be overwhelmed?  And then I worry about their sweet parents…have I prepared them the best I could? I am certainly a worrier of others and I am working on it! But what you can see is that these children become like our own and their parents by extension are as well.  I am fiercely protective of them and pray for their happiness and success years after the have left our program.

I guess that’s why when parents tell me about an experience they have had out in the community, where someone says something about their child that they take offensively, it breaks my heart. Usually people don’t mean harm, and parents for the most part know this, but when you hear “What’s wrong with him?” It’s hard to resist replying “Nothing, What’s wrong with you!”

I’ve always loved Mr. Rogers. A family passed the quote below along to me years ago and I’ve always thought it was so accurate…

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or do other things that many of us take for granted. But what of the people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who are not able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” …

Fred Rogers

Mr. Rogers is so right!  So when you see one of “my kids” out in public, model to your kids an appropriate way to behave.  Look the parent and child in the eyes and say hello instead of looking away.  If you are curious about the child, treat them the way you would any other child. Ask their name, their age, and what they like to do for fun.  If you know a child that can’t see or walk, explain that in simple terms to your own children and talk through ideas of how your child can play with them. Maybe find cool things for a child without vision to touch. Play ball with the child who can’t walk.  Modeling these examples for your own children will teach them to be accepting and compassionate people who have an understanding that ALL people learn and play in different ways.

I’ve found that children with so-called “disabilities” often significantly excel in areas other than where they are challenged. A blind child is the first to notice my new perfume or wristwatch. A child who has trouble moving is the best 3 year- old conversationalist I’ve ever met!   Look beyond what makes children different, and look to what makes them unique.  In doing so you’ll learn an incredible lesson that can often help you with your own “disability.” Each time I do, I’m blown away by what I discover.

Parents of differently abled children often come to a comfort with their lives and their unique parenting role on their own.  This role is a dual one that includes the every day typical parenting things like tantrums, potty training, hugs and kisses, and enjoying play time, but also includes roles specific to the diagnosis or delay their child is experiences like finding specialists, understanding the purpose of various therapies, and using special equipment.  Many parents have told us, they find their unique groove in this dual parenting role on their own time, but frequently with the help of others traveling a similar path.

TreatmentDiaries.com is a great place to connect with those who strive to parent beyond the “disability” and embrace parenting their child.

Join us for our weekly #treatdiarieschat w/ @milestonesm and @treatdiaries on 11/6 @8pm ET!  www.tweetchat.com

 

The Looming Cloud of Alzheimers

Thursday, October 18th, 2012 at 5:49 am  
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When we got the news that my mother-in-law’s ovarian cancer had come back (if it ever responded to chemo the in first place), we were speechless – surprised, betrayed, aghast at the possibility that she was going to lose this battle.  We all hang on every positive word out of oncologists.  “We’re encouraged that the tumor growth appears to be slowing” means “you’ve got a healthy five years of carefree joviality,” right?  Wrong.

Interestingly, my father-in-law, despite ceaseless hand wringing, was far more philosophical than the rest of us.  “We all hope for a heart attack in our sleep,” he said, “but virtually none of us gets it.”  The big fear?  Alzheimer’s.  He said that as devastated as he was to lose his wife’s physical presence in his life, it would have been far more excruciating to watch her brilliant, encyclopedic, vivacious mind disappear while her body remained in the house.

In the past year, two of his closest friends have been diagnosed with Alzheimer’s — men with whom he’s shared 60 years of friendship, college buffoonery, new infants, challenging teenage parenting years, the tragic death of grandchildren, and jubilant trips to Italy.  His friends are gone now, unable to find the bathroom in the house where they’ve been visitors for years.  One is being lovingly but anxiously cared for by his wife of 55 years.   The other has been left by his much younger wife, who can’t cope with the demoralizing caregiving burden much less how to explain to her teenage children why the father who seemed completely age appropriate (he was extraordinarily youthful) no longer remembers that they were born.

And that’s where “the Greatest Generation” lives now – in daily fear that the grim reaper of Alzheimer’s will descend on them or someone they love.

Blessedly, my father-in-law has headed in the opposite direction.  At age 55, when on the phone with a delivery person, he was unable to remember his own address.  He put down the phone, walked to the front porch, looked at his house number, and returned to the phone able to provide his street address.  “We’re doomed,” we thought.  But 22 years later, he’s sharper than ever – still working and teaching, taking his students out to lunch, downloading apps onto his iPhone and then edifying us about how they work.  His social schedule is bustling (all managed via google calendar), and he only forgets the things he wants to (like how to operate a washing machine).   We are extraordinarily lucky.

But, like so many older Americans who don’t actually have Alzheimer’s, he lives in fear of it – not only that it will consume his brain but also that yet another brilliant dear friend will slip from his grasp, no longer recognizable due to this insidious disease.  It’s a cloud that looms at all times.  Deep, penetrating terror.

Roughly 5 million Americans currently have Alzheimer’s disease, and the latest statistics are that if you live to be 80, you’ve got 50-50 odds of getting Alzheimer’s.  Given that the population of Americans 80+ has increased by a million people or 20% over the past ten years, we’re talking about a big group of people.  Who will care for them? How will we care for them?

For starters, as the world-renowned Tennessee women’s basketball coach, Pat Summitt, who took early retirement because of early-onset Alzheimer’s,  has most generously made known to us, Alzheimer’s comes in stages, and many people move through the process of cognitive decline at a pace that their families can absorb into their lifestyles, albeit with difficulty.   At BeClose, we encounter many families whose loved one if, for the most part, continues to operate independently provided they have a regular schedule of check ins and the technological support our system provides.

And in addition to technology, there have been tremendous advancements in assisted living centers, caregiving communities and agencies that provide support and assistance, but these live-in options are often far too expensive for most families.   So families have options for help, but painfully few.  This leaves caregivers and the sandwich generation often on their own, managing their own families, and caring for aging parents – often too much to handle.

Caring.com fielded a survey that showed that caregivers suffer from depression at double the rate of non-caregivers.  We will face the same challenges that society faced when mothers chose in great numbers to take jobs outside their homes; an ecosystem of caregivers, compatriots and social innovators will need to develop to address this rapidly growing need.  As Ellen Goodman, the renowned columnist is quick to point out, the largest group of adult child caregivers are the boomers right now.  If they could pull off the social revolution of the 60’s, the women’s movement of the 70’s, and the childcare revolution of the 80’s, they’ve got the right skill set to figure this one out too.

Special thanks to Liddy Manson for this guest post.  Liddy is President of BeClose and an emerging voice on Aging in America.  She will be our guest on 10/23 for our  weekly #treatdiarieschat on www.tweetchat.com.  Join us and learn more!

Simple Steps to Medication Management – Tips for Caregivers

Saturday, October 13th, 2012 at 8:01 am  
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Are you managing, organizing and coordinating medications for a loved one and/or for yourself? According to the report “Home Alone: Family Caregivers Providing Complex Chronic Care,” by AARP Public Policy Institute (PPI) and the United Hospital Fund (UHF), 46 percent of family caregivers perform medical and nursing tasks for care recipients with multiple chronic physical and cognitive conditions. 78% of family caregivers who provided medical/nursing tasks were also managing medications, including administering intravenous fluids and injections which there were not trained for. Another recent study by the National Alliance for Caregiving and AARP found one in five caregivers need help talking with doctors and other healthcare professionals.

Adverse medication costs

Medication management is a growing and costly problem for caregivers, seniors and at-risk individuals in the United States. Failure to take medications as prescribed by your physician causes more than 1.5 million preventable medication-related adverse events. According to the 2009 New England Health Institute (NEHI) data, the cost to the US health care system is approximately $290 billion annually. According to the National Council on Aging, older adults are the nation’s largest consumers of prescription and over-the-counter medications. On average, the older adult takes 4-5 prescription medications and 2 over-the-counter medications a day. According to a study of older adults taking five or more medications, 35% experienced an adverse effect from at least one, 63% required physician intervention, 10% required and ER visit, and 11% were hospitalized.Twenty-eight percent of all hospitalizations among older adults were found to be medications related 11% for nonadherence. Medication errors are the 5th leading cause of death for older adults and can create costly and serious, even catastrophic, health problems. There are estimated 7,000 deaths per year due to adverse medications events.

Caregivers Burden – Medication Management

Medications while helpful or even lifesaving, can come with several related problems such as medications interactions, side effects, contraindications or allergic reactions. When taking several medications, the chance of adverse effects increases.  Caregivers unfortunately sometimes become caregivers overnight and are expected to master how to do everything else including balance work, children, and their own health and manage medication for their loved ones without prior training or advice.  This is where pharmacists can help. Pharmacists continue to be underutilized resources. They are trained experts who educate, train, work and collaborate with physicians, nurses and other healthcare providers to manage medication related issues and improve patient outcomes. The likelihood of medication errors occurring decreases substantially when patients know their pharmacist and feel comfortable asking questions and seeking the pharmacists’ advice. Pharmacist is part of a health care team, working to ensure the best selection and management of your prescription and nonprescription medicines.

Recommendations

As a clinical pharmacist, a parent, and a caregiver, here are my top tips for caregivers on medication management below. Caregivers in doing everything for others tend to not ask for help from others. Caregivers should ask questions and more questions. Ask for help. Feel empowered.

 Know your local pharmacists:  Like anything in life, shop around. You must feel comfortable with your pharmacist. Get their name, phone number and hours. As the healthcare system is getting more complex, so are new medications, regimens. Pharmacists are an integrated member of the health care team and are well versed in providing advice to caregivers, patients and health care providers on the selection, dosages, interactions, and side effects of medications.

Know your medications: Doing tip#1 will help with doing tip #2. To many, medications mean one thing – prescription. The word “medications” should always include OTCs, prescriptions, herbals, natural supplements. When talking to your pharmacist and physician, make sure to

Make or have a medication list & get organized:  If you have tips #1 and #2, the developing a medication list should be as easy as ABC. Remember, this list should include OTCs, prescriptions, herbals, and natural supplements or remedies. With any adjustments or changes, medication list should be up-to-date as well. There are so many resources, forms and tools to use to stay organized. Microsoft excel is great. American Society of Health System Pharmacists has an awesome form called My Medicine List™. In addition to developing a complete medication list, caregivers can use a pillbox to stay organized and smart phones or phone alarms as a reminder scheme to avoid missing doses.

Medication reconciliation: Caregivers should be part of the hospital discharge process and have access to the discharge notes with list of medications. One obtained, medication list should be updated and communication with primary care provider should occur. Talking to your pharmacist will also be key to avoid therapeutic medication class duplication

Use one pharmacy:  In efforts to save money and get discounts, many patients, families tend to switch pharmacies. This means getting reacquainted with another pharmacist. Using one pharmacy – saves caregivers precious time, save money (as your pharmacists can recommend using a mail order pharmacy, if you have insurance and take chronic medications; tips on how to enroll in prescription assistance program (PAP) for those without insurance or their party coverage.

Buying medications online: Before doing so, follow tip #1. Pharmacist can help instruct & advise caregivers and patients on the safest online pharmacies to use. The US Food and Drug Administration (FDA) recently launched BeSafeRx, a national campaign to raise awareness of the dangers of buying prescription medicines from fake online pharmacies. To learn more about this campaign, please click here.

Resources: Below are more resources to help.

Remember – October is American Pharmacists Month and the team this year is “Know Your PHARMACIST, Know Your MEDICINE.” Caregivers – practice this daily for patient safety & better healthcare outcomes!

Contributor and #treatdiarieschat Guest 10/16/12 – Dr Goldina Erowele, (PharmD) – Clinical Pharmacist, Caregiver, Patient Care Advocate & Cofounder, CareNovate.com

 

Preparing for a Doctor’s Appointment to Maximize Precious Minutes

Saturday, September 29th, 2012 at 4:59 am  
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No one likes to go to the doctor. It makes us nervous. We may be worried about our health, and the unfamiliar surroundings don’t help. We realize that our medical care is in the hands of someone else and we aren’t sure we trust everyone involved.

Even if we do trust the medical providers, we might still be anxious. We sit in the exam room, listen to what is happening outside the four walls and wait. We are alone with our concerns until the doctor walks in. We understand she is pressed for time so we try to cram everything we want addressed into a very short period of time, usually 7-15 minutes. We enter into a conversation with our doctor, are asked questions, report our symptoms and what is occurring with our health, become sidetracked and …bingo!..we forget the important questions we wanted to ask the doctor.

 Why?

 Stress interferes with our memory. It happens to all of us. It’s not uncommon to leave a doctor’s office and remember an important point of our visit that was not addressed. All because seeing a doctor about a medical issue is stressful.

If you prepare ahead of time, you’ll feel more confident and more empowered as a patient. It’s about taking charge of what you can. It’s not easy being a patient, and believe me, I’ve been a patient for a long time. For 16 months I had a severe chronic pain condition (lower abdominal pain) and ended up living each chapter of my new book, The Take-Charge Patient: How You Can Get the Best Medical Care. The journey was not an easy one. Ironically, six months into my interviews of over 200 physicians, nurses, other medical professionals and patients for my book, unrelenting pain forced me to use the strategies I’d developed and gleaned from my research. I saw 11 physicians of differing specialties, 3 alternative medicine practitioners, went through 15 procedures and tests and was prescribed 22 medications. I received 10 misdiagnoses. To say that I was discouraged, exhausted, depressed and disillusioned with medical care, is an understatement. But through my research, I found my own diagnosis and the surgeon to heal me. As it turned out I had a muscle tear in my C-section site with nerve involvement, an inguinal hernia with a nerve passing through the hole, and two belly-button hernias. Because hernias in women are rare, no medical provider I saw thought of it.

Tips to prepare for a successful doctor’s appointment:

1. Prepare a list of questions for your doctor. What do you want addressed in the office visit?

2,  Create a brief health summary that includes:

-your top three medical concerns

-your list of current medications and their dosages, over the counter medications, herbs and supplements

-any symptoms you’ve been having, when they occur, what makes them worse or better (for example: exercise or eating) and what you have tried for symptom relief.

-List any medical professionals you’ve seen for your current condition or for other conditions that pertain to your visit.

3.  Prior to your appointment, obtain copies of any test results and reports that were done by other physicians. Bring these copies with you. Never rely on a doctor’s office to send them as medical offices are very busy and your request can be easily overlooked.

4. If you are seeing this doctor for the first time, create a brief health history including major medical events such as surgeries, serious illnesses, medical conditions and more.

Preparing in this way will allow your doctor to view your entire medical picture. This saves time and prevents you or the doctor from lassoing the information from other doctors or your pharmacist. Putting it together also familiarizes you with what is happening with you medically, where you’ve been, whom you’ve seen, and what medications you are taking.

This is about being in charge of you as a patient. And taking some of the control eases anxiety, and increases self-confidence.

Written by – Martine Ehrenclou, M.A. Patient advocate, patient and award-winning author of The Take-Charge Patient and Critical Conditions.

Join us for an hour with Martine and learn more 10/2/12 @ 8pm ET www.tweetchat.com #treatdiarieschat

Kindred

Wednesday, September 19th, 2012 at 1:51 pm  
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“What did you want that you didn’t have while you were a child being treated for cancer?”

Without fail that is one of the MOST common questions I have been asked through the years of my survivorship.

My answer has NEVER changed: a friend in kind, kindred.

Friend is defined as one who is attached by affection.

To me, this definition is too broad, incomplete, and altogether inaccurate.

It brings to my heart-mind an acquaintance more than a friend. It speaks to a feeling which we all know to be fleeting [and] it is silent with regard to the choice, an act of the will, involved with being a friend.

It’s akin to a Facebook “friend”, a fly on the wall of your life, representing an interest, but no real investment into you, your life.

Nevertheless, I concede that you must choose to confirm or ignore a friend request.

Please do not get me wrong, I think there is a place for these “friends” on the walls of our lives. In fact, I am that kind of “friend” to 400 individuals and counting.

This post, however, is about a friend in kind, the kindred friend; the ONE thing I wanted MOST but did NOT have as a child being treated for cancer in 1978. You see, the cancer world was not appreciating overwhelming success in the treatment of Ewing’s Sarcoma in the late 70′s, so there was no one, not even one child to come alongside of as a fellow traveler.

Kindred is defined as a connection in kind.

Ergo, a kindred friend is a friend who is attached by affection [and] a common life experience.

A kindred friend is that friend who KNOWS what you mean instantly because they have walked a similar path.

The kindred friend is different, unique.

The kindred friend is set apart even from the friend who relates to you based on their knowledge of you [and] the history of their friendship with you.

Kindred is knowing versus knowing about; facts undergirded by experience versus facts alone.

The kindred friend is the kind of friend who has lived the right to speak into THAT moment of your life.

For me, where there is kindred, there is comfort.

 

 

Treatment Diaries [and] MHYH have been working together to bring together the individual missions of our organizations in a way that reaps the MOST benefit to individuals [and] those who love them facing any point along the cancer trajectory.

Today, TD in collaboration with MHYH launched a page within their site addressed specific to those facing cancer, their loved ones, their caregivers, and those who are simply curious or perhaps new to the club so to speak.

Personally, TD has provided a place, my personal diary, where I can scribble the thoughts of my heart, then choose to share or not share those thoughts with kindred kind of friends.

Today is a great day to scribble in your Treatment Diary that you might reap the benefit of Shared Healing.

Simply,

Stephanie

Stephanie D. Zimmerman, MSN  President [and] Co-Founder  myHeart, yourHands Inc.

When Life hands you Lemons…

Tuesday, September 18th, 2012 at 8:35 am  
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A guest post from our TweetChat guest - Deb Stanzak who is the Founder/CEO of RonWear Port-able Clothing®. This chat is scheduled for 9/18/12 @8pm ET www.tweetchat.com #treatdiarieschat!

The old adage: “When life hands you lemons, make lemonade” is true.  But you have to

1) squeeze them into the pitcher, 2) add sweetness 3) share the goodness!  With that said, I share my ‘lemonade’ story.

Since I was 10, the fashion industry dominated my thoughts.  Starting with learning to sew, landing my first job as a sewing instructor for Sears at age 16; going to college for Fashion Merchandising, and beginning a lifelong career in textiles and apparel.   Upon graduation, I landed a position as an Assistant Buyer in Fabrics for the May Co, Cleveland.  My fashion career went on for the next 35 years.   Life happened and I got married in 1992 and had my only child, Jaime in 1996.  Life continued on–working, raising a son, being a wife, caring for a home.

Here come the lemons…  In 2001, my husband Gary was diagnosed with Multiple Myeloma, a rare cancer of the blood in the bone marrow.  In 2004, my brother Ron ended up in the ER with complications from diabetes, and my mother, who Ron lived with ended up in the ER the next day with Congestive Heart Failure.  My mother-in –law fell and broke her hip shortly thereafter, and she was in the hospital, also.

Add the sweetness…This went on for the next several years:  my husband on chemotherapy, my mother getting blood transfusions, and my brother Ron on dialysis. They all complained of the same things during their treatments:  it was cold in the treatment centers, and it was very immodest—especially in a hospital gown.  My brother Ron was the first to complain.  I wanted to fix the problem, so as a seamstress, I made him a makeshift warm fleece shirt with a zipper in the arm.  I brought it to the hospital and said, “Here, try this.  Just put on the warm shirt, unzip, connect to your port, get your treatment, and stay warm”.  The next day he told me everyone wanted one and I would be a millionaire.  I had no time to produce anymore, as I was caregiving for the other family members also, as well as tending to a young son.

Share the goodness…My brother passed on in 2005, my mom in 2006 and my husband in January of 2008—and HIS dad died 10 days later.   Now what?  How do I go back to a busy retail job—nights, weekends, holidays, and leave my then, 11-year-old son, who lost all those who helped raise him, alone?  I couldn’t.  So per my doctor, who asked what I was going to do for the rest of my life, I sat down with a couple nurses, and redesigned what I now manufacture for all chemo, dialysis and infusion patients:  RonWear Port-able Clothing®.  Named after my brother Ron, I have built a treatment clothing company that helps all patients with ports be warm and comfortable. RonWear was also recently recognized by Chase and Living Social as a winner of the Mission: Small Business Contest. As a winner, RonWear was awarded a $250,000 grant to continue our mission. RonWear put the ‘band aid on the bubble’ that my brother, mother and husband lived in with their diseases.

So from lemons, to lemonade, my adversity isn’t so adverse anymore.  We lost 4, but now we can help thousands stay warm, comfortable and dignified in RonWear.

 

Deb Stanzak is the Founder/CEO of RonWear Port-able Clothing® which provides clothing for chemotherapy, dialysis and other infusion therapy.  Her business is based in Beachwood, Oh. 

Curious about Autoimmune Arthritis Disease Types? Meet IAAM!

Sunday, September 2nd, 2012 at 5:11 pm  
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The International Autoimmune Arthritis Movement (IAAM, pronounced “I Am”) is the first and only nonprofit created to focus solely on primary joint diseases with an autoimmune component.  They realized these 7 diseases (plus Mixed Connective Tissue Disease and the Undifferentiated Connective Tissue/Spondyloarthropathies)* are the most similar to eachother in onset, disease symptoms and treatment plans.  Recognizing this, both as a patient and as a doctor/therapist, can bring not only much needed awareness to these diseases but also can better the understanding to promote early recognition, and in turn, earlier diagnosis.  Given 50% of these patients face complete disability 10 years after ONSET, early detection is essential. However, currently time to diagnose averages 2-3 years, yet the recommended time to aggressively treat these diseases falls at 6 months after onset in order to ensure a better chance of remission.  Clearly there is an imbalance; IAAM is working to bridge the awareness and education gap!

In addition to this wellness sector, IAAM focuses on Awareness and creating a Global Network of resources, yet often all three of these goals overlap.  The best example of how all three objectives merge is in their establishment of World Autoimmune Arthritis Day (WAAD), an online, virtual convention that runs for the duration of May 20th in every time zone around the world (totaling 47 hours).  This event provides tools for awareness and education by uniting the world of Autoimmune Arthritis under one roof; participants include patients, doctors, therapists, support groups and nonprofits from anywhere in the world.  In addition to an extensive database of donated resources, there is also a Virtual Lounge, where patients can communicate with others around the world in real time.

While WAAD occurs annually, the rest of the year is spent on programs that bring awareness and wellness education to those affected, including the Media Awareness Hotline, a new Medical Awareness Hotline and educational program and most recently the IAAM ACE’s, a collaborative art exchange program that allows patients to advocate by collecting cards (or ‘stories’) about those who are important in their Autoimmune Arthritis circle.

IAAM has teamed up with Treatment Diaries as part of our Global Network and wellness initiatives. While they as an organization do not offer support programs they do seek out quality sites and groups who can offer assistance and then will recommend them to those seeking help.  Mental health is an important part of managing Autoimmune Arthritis diseases and IAAM encourages the use of programs, such as offered through Treatment Diaries, to fill that need.

Join us for our weekly #treatdiaries chat at www.tweetchat.com on 9/4/12 @8pm ET to learn more!

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