Archive for 'illness'

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

 

Kidney Disease, Cancer, You & Libre Clothing

Monday, April 23rd, 2012 at 11:46 am  
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In January of 2008 I learned of kidney disease, and inconsequently, dialysis for the first time. By February, I knew it all too well. My mom had been put into the hospital, and ultimately, put on dialysis because of sudden loss of kidney function for unknown reasons. It was scary and sad, and ultimately I wanted to help in whatever way possible. I wasn’t sure what to say or do. It was new to us all, and being away from her at school was harder than I had imagined.

From that day on our lives were changed, hers especially, with dialysis treatments three times a week for up to four hours at a time. She had to retire from teaching after 28 years so she could make her treatments and her life suddenly revolved around this disease and the discomfort of treatments that came along with it. People always say “Let me know if I can do anything to help,” but what can we really do if we’re not in the medical field? Offer kind and compassionate words, support them in whatever way possible? It wasn’t enough for me.

I struggled realizing how hard things were for her. She didn’t have the freedom she once had and now relied on a machine in order to stay alive and healthy. Daily tasks now put her on the brink of exhaustion, and it was hard for us all to realize that this disease was taking a bigger toll on her than we had originally anticipated.

In the Fall of 2008, I was a senior at Miami University minoring in Entrepreneurship and was looking for an idea to pitch to the class for our semester long project. I called my mom to ask how her day had been and realized that I was hearing the same problem over and over, “I’m so cold during treatment and I can’t cover up with a blanket, so I’ve been cutting holes in my old sweatshirts to wear. It’s pretty ugly but it keeps me warm!” Then a light bulb came on. Why should she have to sacrifice style and dignity just to stay warm for treatments?

That is when Libre was born, and there was no turning back. Myself, and three others (Mandy Eckman, Tess Schuster, and Bethany Skaff) forged ahead during our class project, winning the business competition at the end of the semester and vowing that this was what we wanted to pursue after graduation the following spring. That next semester we worked with professors to raise capital and research manufacturing to get things in place. In March of 2009 we became Libre, LLC!

Libre is a clothing line made specifically for chemotherapy, dialysis, and other infusion patients. Our clothing is an everyday staple in anyone’s wardrobe, but has discreet areas of access specifically for a patient’s treatment site. The clothing keeps the patient covered and warm while keeping the treatment site accessible, and visible, for nurses. Zip it open when you’re at treatment, and zip it up when you’re done.

I was not the only with personal ties to the disease through my mother; all four of us were connected to these diseases in one way, shape, or form. Our passion for Libre is driven by helping those we love, our very supportive customers, and all of those patients out there who can benefit from our products. “Libre” means free and open in many languages, it’s our goal to make patients days a little more Libre!

I’m happy to say that my mother was blessed enough to receive a kidney transplant from my best friend in December of 2010. it was an amazing and scary time in my family’s life, but knowing the new life, and freedom, my mom would gain was worth it.

As you can see, resources and support were a huge part of this process and having a place to go, such as TreatmentDiaries.com, would have been so beneficial for my mother and family. Knowing what to expect, and receiving support from those who have been through this first hand is something that everyone deserves to be aware of and be a part of.

Thank you again to Amy for giving me the opportunity to tell my story and more about Libre! We love what Amy and Treatment Diaries represent and we’re very excited to be working closely with her to bring positiveness Libre Testimonials, support, resources, and more to those who are willing to connect and help each other. deserves, to make their time through whatever illness that much more bearable.

 

*You can contact us at Info@LibreClothing.com, or go to our website www.LibreClothing.com

Your Online Resource in Navigating a Journey with Illness

Tuesday, March 27th, 2012 at 8:07 pm  
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A patient diagnosed with a serious illness can go through a range of emotions.  Being diagnosed with any disease is no laughing matter. Some people are able to accept a diagnosis and immediately act on a treatment plan while for others it may take a good deal of time before reality sinks in.  Those with loved ones on this journey with a newly diagnosed illness can also go through a variety of emotions.

TreatmentDiaries.com is a social network for patients diagnosed with illness in addition to those individuals who care for loved ones.  Being diagnosed is often the beginning of the journey.  Many struggle with the length and complexity of the journey which is why it is comforting to seek support and encouragement from those who can relate.  By sharing experiences, people who are diagnosed with a similar illness can exchange their experiences, treatment approaches and how they navigate an illness. This is often the best way to adapt to struggles and to feel better with the exchange of valuable information from those with a similar experience.  Writing is an excellent outlet for expressing your emotions as it relates to a diagnosed illness. Thoughts and fears which are difficult to express and often bottled up inside to prevent your family from being concerned, can be shared anonymously at TreatmentDiaries.com.  The opportunity to express yourself without concern for how it will affect those who know you physically and to connect with a community, who understands your experience, can provide peace of mind and overall well-being.

If you are diagnosed with a serious illness, sign up with TreatmentDiaries.com today and connect with people who understand.  Share with those on a similar journey and be inspired to feel better despite your illness. Being diagnosed with a serious illness can have a huge impact on your life; you don’t have to navigate this journey alone.  Let TreatmentDiaries connect you with those who care so you can live life to the fullest!

Rare Disease Day 2012

Wednesday, February 29th, 2012 at 2:11 am  
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How do you find the individuals who truly understand the disease you live with?  Imagine a disease so rare that you are one in a million or possibly one in five million?  It’s certainly not like having diabetes or breast cancer; unfortunately these connections are easy to come by.  On the flip side, rare diseases come in many forms; there are roughly 5,000 – 8,000 known throughout the world.  Many of these rare diseases are difficult to spell, pronounce and even treat let alone understand well enough to share the details with those who don’t have them.  In this scenario, the need to find someone who is “just like you” is vital to your peace of mind, well-being and ability to relate to others for encouragement and support.  This is a goal often difficult to achieve and can prove challenging.

Rare diseases affect so few people that they are often referred to as “orphan diseases”.  There are some diseases that are truly one-of-a-kind and usually happening because of a genetic defect, it can be difficult to find the support you need to feel better in your disease; connecting through shared symptoms and treatment insight can provide perspective on what might be misdiagnosed, undiagnosed, and incurable providing the encouragement you need in a world of isolation.

Social networking can assist an individual in finding that connection (needle in the hay stack) of rare diseases.   As a result of living with a rare disease, there are fewer medical professionals with a focus on these medical conditions and often fewer proven treatment options to consider.  Learning how others are living with a rare disease and their treatment approach is invaluable.  Preserving your anonymity and protecting your privacy is also important in meeting this need. Treatment Diaries is a great way to find people who understand.

Actual TreatmentDiaries passages:

“It is so frustrating when you KNOW you’re sick and the doctors just want to “pick” a diagnosis so they can get you out of wherever you are and on your way. In all fairness to them, I do think they mean well, for the most part. My GI wants to pin IBS on me because he can’t find anything else even though I have tons of esophagitis, white plaque coating the esophagus and severe gastritis, not to mention it feels like someone is putting a curling iron into my large intestine and trying to curl it…maybe I have a rare disease!” EDM

“I disguise my disease very well. I smile, I laugh, I cry every day! I try to enjoy my life as much as I can. But sometimes I feel overloaded and frustrated with my body, with my health and with the crazy mix up way that this disease and I get along. The disease usually wins out in the end, but I want to fight!” TAC

Would you like help adjusting to living with a rare disease?  People, friends and family mean well and want to offer sympathy through words like, “I know what you’re going through.” In actuality, the only people who can really relate are people who are dealing with the same disease or one like it. They can offer insight for dealing with symptoms, experience with specialists, advice for preventing complications, and most of all, an encouraging ear from someone who really understands. You may just need to vent, or you may need more in the way of communication with others and access to resources.

Do you have a rare disease or know of someone who does?  TreatmentDiaries can make a difference in a life affected by illness.  Isolation is no longer the only option. Users from around the world care about personal struggles with rare diseases and the conditions which consume your days.  Find someone just like you at www.treatmentdiaries.com and start feeling well in your illness.

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