Dr. Susan Massad is a retired Doctor of Internal Medicine of 51 years.  Dr. Massad's focus was Doctor - Patient communication and the relationship in general.  She continues to lead workshops and conversations through the East Side Institute on creative aging, health and wellness and issues of dementia, death and dying. Susan has recently published a play about dementia, "Remember Remember" and co-directs a Senior Performance Improv Group at the All Stars Project in New York City.

Care+Wear and Dr. Susan Massad

I was first diagnosed with breast cancer in 2010.  A fit and healthy 73-year-old practicing physician I was not high risk and was determined that this problem was not going to slow me down. The cancer was low grade, hormone positive and easily treated with an uncomplicated lumpectomy and three weeks of radiation therapy. Aside from being acutely aware that I was joining the ranks of one in eight woman in America with breast cancer, my remembrance of the impact of the experience is that it was somewhere between having a bad flu and a sinus infection.  I was a lucky one, my cancer genes favorable for cure and I was able to return to work almost immediately.  Four years later the cancer returned in my thoracic spine, and I was unprepared for the intensity and pain of the recurrence as I quickly moved up the ladder from stage I to stage 4 cancer.  I am now officially a cancer patient, under treatment for, what I am told, will be the rest of my life.  And I am subject to all the measurements and follow-up surveillances that go with such a diagnosis. 

 

Shortly before the cancer reoccurred I had retired from 51 years of medical practice.  For many years my medical career had been intertwined with an active life as a volunteer community organizer, working in independent politics, youth programs, community health, human development and learning activities that I would continue into retirement.  The promise of entire days off also offered me the possibility of trying some things in my life.  I took art classes, joined writing groups and completed a short play or two.  Most of these forays into the arts were through workshops and classes offered by the cancer community - The Creative Center in NYC, Write Cancer workshops at Beth Israel Hospital and others.  I was drawn to these as they were all accessible and did not presume any expertise. I currently attend two weekly writing workshops and am an irregular participant in art classes. 

 

I don’t think it is too much to say that these experiences in the creative arts have transformed my life.  I am not sure why.  I have not been discovered, nor, except in my most grandiose moments, think I ever will be a published author.  The cancer experience is rarely the subject of my writing or, conversation.  In this sense it is not the cathartic experience that one reads about. Yet on most days I leave our weekly workshops absolutely exhilarated and derive a great deal of joy from the writing experience.

 

One of the impetuses to explore the relationship between my writing experience and cancer comes out of a deep and abiding interest throughout my medical career of defining and exploring a practice of health and healing that extended much beyond the medical model that continues to dominate our approach to medicine today.  The model says, you have a problem, you find the cause, i.e., the diagnosis, and you fix it up.  Although art therapy, music, happiness, laughter, joy, relaxation techniques are recognized as important adjuncts to the healing process, offered in many cancer centers, including my own, arts therapy and other alternative therapies are related to as being in the service of cancer care.

 

In a large National Cancer Institute survey on the effect of creative arts therapies on cancer patients it was reported that participation in a creative arts program significantly reduced cancer related depression, helped people adjust to changes in body image, cope with the stress of treatment as well as grief and fear.

 

I am not in disagreement with these assessments. To me, they do not take these findings far enough. Some of my experiences and others in the writing group including our leader who herself is a published author and person with cancer, is that participation in the creative arts, broadly speaking, gives one a way back into one’s life. 

 

The Cancer narrative is an extremely powerful and compelling one, can take over one’s life.  You are a victim, you are a soldier in the war against cancer, you participate in the conquest of cancer, you survive cancer and your first priority should be “cure.”  Organized by this rhetoric, Cancer can become our life as opposed to one of the things that are happening in our lives. I am a writer, a playwright, a community organizer, and a person with cancer.

 

Additionally Cancer is BIG.  It takes up a lot of space in my life, sometimes a great deal and at times, not much.  The demands of treatment, management of side effects, protocols, the testing, the waiting for results, can eat up our energy. The writing activity gives one a time out, another really important thing to do in my life.  It can change my life.  I have found that taking part in this creative activity helps me to be more creative in all aspects my life, including how I do my cancer.  For example I am not, like many people I know, a willingly medication taker.  When I am in pain I have been open to exploring other more creative things to do than taking pain meds.  I call a friend, breath deeply, go to the gym for some slow stretches. Pain, nausea, fatigue, depression, sleep problems are not infrequent components of the cancer experience and, like the writing experience, I can go on a journey to get to know them, embrace them and change them.

 

There are many other positive things to say about my experience with the creative arts and cancer. One that has meant a great deal to me is the community building aspect of these projects. In the writing workshops we come together every week, to write and read our work. After the workshop, we pair up to travel up-town or down-town on similar routes, and sometimes a shy invitation to a movie or a meeting is part of our interaction. We relate not as a community of cancer survivors, in fact we rarely speak about caner. We are a community of writers, story tellers, artists, creating a new performance of Cancer.

 

One of the others writing about illness and the arts who share in this understanding is Dr. John Graham Pole who founded the Arts in Medicine program at Shand Hospital in Florida. Graham Pole says, “we make a clear distinction between art that patients, and clients passively enjoy and art that participants create themselves.  …Participation is more effective in the healing process of illness both physical and psychological because the more involved patients are in the creative expression, the more able they are to take charge of their situation.”

 

I want to end with a quote from my favorite medicine in life expert, Patch Adams. “Creativity is great medicine for all, both the creator and the one who experiences it. It is not an indulgence; it is fundamental to medical practice.” 

 

 

 

 

 

 

 

Cathy Rosa is an art therapist and yoga instructor from Hunterdon County, NJ, living with Chronic Late Stage Lyme and multiple Co- infections. (Erlichia, Babesia, Bartonella). She's the Mom of a beautiful 3 year old daughter who she says keeps her going every day. When asked about her experience with Lyme disease, Cathy says, "I'm grateful to this disease for teaching me self-love, faith, how to ask for help, compassion for myself, and patience (although I'd never wish it on anyone :)  One day at a time is all anyone can do." Learn more about Cathy's Lyme journey below:

Living through a chronic illness has led me many times to live by the motto "fake it till I make it." A chronic illness warrior has to make a decision to press on, despite physical, emotional, and mental pain. We have to push ourselves to shower and eat and to resist the urge of falling into despair. Creating a sense of normalcy is paramount! Care+Wear covers absolutely help me in that process. People don't stare at me or look freaked out because they know there's something seriously wrong with my health, like they did when I wore the white cotton disposable infusion center cover.  Care+Wear covers fit snugly, like a comfy t-shirt. It is very easy to access my PICC line, my cover keeps the long cord contained and tucked away, and it's actually really cute! I have 3 different colors so I can coordinate. I don't have to identify as a sick patient, even though I'm battling a very serious illness. I'm a survivor and a fighter and any steps I can take to constantly remind myself of that is so necessary! Also, the experience of buying these covers was great. I received the covers quickly, outstanding customer service, as all questions and concerns were promptly handled. I can't speak more highly of this company and their products. Thank you so much Care+Wear!

Haley is a 23 year old Georgetown University graduate living in San Fransisco. She is currently being treated for Late-Stage Lyme disease, which she likely acquired at the Age of 11. Learn more about Hayley's complicated PICC Line journey below:

I had two PICC lines over a period of 4 months, and I will inevitably get another one this spring.  I’m being treated for Late-Stage Lyme Disease, which wasn’t diagnosed until a year and a half ago, even though I was likely infected at the age of 11 (I am now 23). After 9 months of oral antibiotics, my doctor developed a treatment plan entailing a few different types of antibiotics given intravenously over the course of 4-6 months. A PICC line was my best mode for these medications because it is easily accessible for me to give myself daily treatment.


Having a PICC line certainly comes with its ups and downs, and I had my fair share of complications. I got a blood clot in the arm with the PICC, then had to watch for certain symptoms to make sure it didn’t migrate and cause a Pulmonary Embolism. I developed allergies, and therefore nasty rashes, to the two main types of cleaning agents for the PICC site. My second PICC insertion was a painful nightmare due to my veins constricting and my body not responding to the numbing agent. I got Clostridium Difficile twice, a serious intestinal infection that causes colitis, and if not properly treated, can lead to a colon rupture, bowel perforation and even death. As I attempted to clean my second PICC myself while visiting family for Thanksgiving (normally a home nurse does it), 5 inches of it fell out, so I ended up having to pull the whole 39 cm of it out myself. As a result of all these, I made 4 different trips to the ER.

I knew there were risks, but I figured they wouldn’t happen to me. I wish I had been a bit more realistic with my expectations instead of thinking all would go as planned: smooth insertion, treatment, recovery, and removal.

Everyday life changes a bit when you have a PICC line, but it’s pretty easy to adapt. I got used to it, and my friends and I even named it, we called it “Picky”. Honestly, showering was the most difficult thing I had to deal with everyday – I have very long hair, so washing it with my dominant hand in a bulky arm cast cover was a challenge. And somehow I never remembered to clean that covered arm after I got out of the shower. Gross, I know - I think I’ll blame that on the Lyme brain fog! Another thing that changes is what clothes you can wear – if I was wearing the cover I was provided with, which looked like the Styrofoam covering that comes on apples, I couldn’t wear most of my fitted long sleeved tops or dresses, as they wouldn’t fit over the bandage and covering. Even just the bandage and the line extender without the cover add some bulk to your arm. After seeing the Care+Wear cover up close and personal, I wish I had one during my time with my first PICC lines. My doctor told me I will be getting another PICC in the next couple months to continue treatment, and I’m excited to have something snug to replace the Styrofoam apple cover! I also like that it’s made of an antimicrobial material and has a mesh window to monitor the site, as I worried about infection.

Those inconveniences didn’t bother me too much, but not wearing long sleeves means people see that you have something going on with your arm. Whether I’m wearing the “apple covering” or just rocking the see-through bandage out in the open, people notice. You get some questions. You get many more stares. At the few parties I was able to go to, I got a lot of weird looks as soon as my jacket came off. Some drunk people asked about it, but not in a rude way. And going through airport security can be a pain in the butt (I find it better to explain to TSA off the bat, or get Pre-Check if you can!). I got a pat down and questions every time. Before I had a PICC myself, I thought more people might know what one is, or at least have seen one. Reality check, they don’t. People are usually polite about their ignorance of it, but I got the occasional “What the hell is that thing?” or “Do you really have to wear that all the time?”

As far as the reactions of those close to me, some thought it was gross and didn’t want to look at it closely or watch my self-infusions. Others, who were either fascinated or pretending they didn’t think it was gross to be supportive, sat with me during infusions and asked questions so they could better understand what I was going through. For acquaintances and friends I’m not as close with, the PICC was shocking. They hadn’t realized quite how sick I was, and seeing that I had to give myself meds through a semi-permanent tube in my arm opened their eyes to what I had been dealing with for so long. Some people needed that physical symbol to understand.

From the beginning, I decided not to care what people’s reactions were. Of course I appreciated the support of family and friends, and didn’t mind answering questions. But I decided that I wasn’t going to let my life be further altered by trying to wear certain clothes to cover it up or pretend it wasn’t there. Having a PICC became part of my reality, and I didn’t feel the need to hide it. Plus, it was a necessary part of my long journey back to health. I viewed it more as a badge of honor than something to be embarrassed about, a symbol of what I have gone through and continue to endure. I had a plastic line sticking out of a hole in my arm, how badass is that?

Allie William's Lyme disease journey is nothing short of inspirational. She went from experiencing inexplicable symptoms and repeatedly being told that there was nothing wrong with her, to finally receiving a correct diagnosis: Lyme disease. Allie is now undergoing treatment using a PICC Line, and loves her Care + Wear violet PICC Line cover. Learn more about Allie's incredible journey below:

My name is Allie Williams and for four years, I was told I wasn’t sick; I was told that I was stressed; that I shouldn’t work, take classes, and play volleyball; that I should sleep more; that there was nothing wrong with me. I consulted countless specialists in NYC, San Francisco, Memphis, and Michigan; they all gave me the same answer: “Your tests are are normal so I guess there’s nothing wrong.” However, what do you do when you’re 21 and have to ice your joints in the morning before you can walk? What do you do when you take three ice baths a day, prescription painkillers, and a sleep aid just to be able to get through the day? What do you do when you wake up somedays and can’t walk? You keep searching for answers.

Steroid shots in sacroiliac joints. Xanax. Oxycodone. Ice packs. Sports massages. Acupuncture. Naproxen. Non-specific autoimmune disease. Humira. Mobic. Morphine. TMJ. Gluten allergy. Fluoroscopy. IBS. Dicyclomine. Xifaxan. Colonoscopy. Endoscopy. MRIs. CT Scans. Severe lower back pain. Back brace. X-rays. Bone imaging, whole body with Medronate. CT scan pelvis w/o contrast for better image of lesion on coccyx. No answers.

I had given up. I was resigned to feel like this forever. After being misdiagnosed and prescribed Humira, I ended up in the hospital in November of 2014 with what looked like Meningitis. I couldn’t move, open my eyes, eat, or speak. For four days. Looking back, it was a Lyme flare up. However, I had not been diagnosed yet so I carried on, burdened with an illness no one could name.

Luckily, my mom is a warrior. She is a fearless researcher who does not take multiple doctor’s opinions as the only answer. She believed me. After four years of hearing “there’s nothing wrong,” she was fed up. I was coming to terms with feeling like this forever; she threw herself into more research. In August of 2015, my mom called me and suggested I see one more doctor. I said no. I was tired of seeing doctors who gave me no answers or told me my illness was in my head. She pressed me: “I think you have Lyme. If this doctor doesn’t listen, then we can give up the search and you will never see another doctor about this again.” I said yes. A few weeks later, I flew home to Memphis to meet with a doctor who was Lyme literate. During the appointment, I did most of the talking. And the doctor listened. I was amazed. This was the first time a doctor had actually listened to my story, my pain, my ambiguous symptoms. She did not tell me I just needed more sleep. She did not tell me I was crazy. She told me I was sick and that she thought I might have Lyme disease. So, she drew my blood and sent it to IGenex.

On my 23rd birthday, I flew home once again to visit this Lyme specialist to hear about my test results; I was diagnosed with Lyme, Babesia, Anaplasmosis, Mycolpasma and Rocky Mountain Spotted Fever. The blood tests had come back glaringly positive. I had an answer. Over the next year, I would try countless different combinations of oral antibiotics, antimalarials and herbal supplements, all with a limited degree of success.

Lyme and co-occuring infections manifest themselves differently in every person who is infected. That is just part of the reason it is to hard to diagnose. My symptoms were always ambiguous and changing. Lower back pain so intense that I can’t sit for more than 30 minutes at a time. Sometimes, I can’t sit through a play, dinner with friends, a movie, or class. Lyme affects your entire life. Upper spinal and neck pain so severe I sometimes go from touching the floor with my hands one day to not being able to move the next. Joint pain that keeps me up at night and moves from joint to joint depending on the day. Constant headaches and migraines. Stomach issues: diarrhea every day, painful digestion, and indigestion. Fatigue, bone deep fatigue, that is beyond comprehension and explanation. Weak muscles and no endurance. Most days, walking across the street to buy groceries feels like a marathon. This is #lymelife.

So, here I am now, a little over one year after being diagnosed with Lyme and coinfections and five years into this journey. I now have a PICC line in my left arm and I give myself antibiotics through the line every day, followed by a regimen of oral antibiotics and herbal supplements. I’m not better yet, but I have answers. I have doctors who listen to me and who know how to treat me. I have medicine that will help me get better. And I have a huge support group of family, friends, and a cat who are the real reason I have the hope that I can feel 100% again.   

Living with a PICC line was definitely an adjustment. I went into the operation not even knowing what a PICC line was. That’s my fault; I wish I had researched the procedure, post insertion protocol, and expected limitations of a PICC line. My arm was swollen and sensitive the first few days. I even passed out when my nurse changed my dressing for the first time. But each week it has been less painful! I am able to live a fairly normal life with my PICC line; it’s the antibiotics I’m on that really affect me: extreme fatigue, painful joints, and generally heightening all Lyme symptoms as of right now. Some days, I am even able to go on short runs and do bodyweight lower body workouts to keep myself active.

My friends and family are usually a little surprised when they see the actual PICC line, which is why Care + Wear is so great! My favorite color is the violet Care + Wear PICC cover. Having something to conceal it while in public is extremely helpful to avoid strangers stares. I’ve used Instagram to follow some really inspiring accounts of people fighting Lyme: from food suggestions (paleo, ketogenic diet, etc) to workouts and yoga poses to do with a PICC line, Instagram is great for connecting with people going through a similar experience.

The toughest thing I have faced with my PICC line is the frustration of being sick. For four years I was sick with an invisible illness and I was forced to continue to live my life as if nothing was wrong. Now, I have a name for my pain and have something physically on my body marking me as “not well.” This is mentally tough, as I have always been one to act okay even when I’m not. However, having the PICC line and forcing myself to dedicate all of my energy to fighting Lyme is how I think I will finally heal. If you are struggling with an invisible illness or you have a PICC line for another reason, I truly believe that there are answers out there for all of us. We can get better.

Much love,

Allie

Happy holidays and happy new year! We hope you have had a great 2016 and have a wonderful 2017!

Image result for happy new year

We wanted to quickly thank you for an incredible year. In 2016, we saw our antimicrobial PICC line covers grow into a number of leading hospitals, pharmacies, gift shops, e-commerce sites and more. We added a number of new colors and designs, including our tonal collection. And we expanded our products worldwide

In terms of our products we added our industry-leading antimicrobial port shirts after having many patients and clinicians ask for a better solution!

We were asked to participate and speak at a number of conferences and events and started sharing our story publically

So what's to come? We will always keep working on better and more solutions for you. We continue to refine our industry leading antimicrobial PICC line covers and antimicrobial port shirts. We are bringing out more colors and designs and refining current products.

We're also working on exciting new products with the ultimate goal of building the brand that enables you to live your life and feel like a person again. 

We will never stop working for you! To that end, we're expanding our team and excited to continue growing. 

Stay tuned for more updates and we're excited to make this an even better 2017!

Happy New Year!

Susan and Chat, Co-Founders, Care+Wear

We were recently contacted by Jennifer who asked to write a guest post for us on the prevention stages of breast cancer. Please find her article below! Thank you Jennifer for adding your insights for our community. 

Everyone knows the importance of prevention of any of the diseases and especially those of which are life threatening. Every individual should try to follow these measures in order to prevent diseases like breast cancer. For this purpose, utilizing an earlier breast cancer screening device helps in finding out the changes in the breasts and with regular use changes in the breasts can be detected. This allows you to take the proper measures in order to stop the disease in its initial stage once confirmed. More and more research is in process to find out what all can enhance this procedure. Intervention is always the most positive aspect of any of the ongoing research methodology.

Initial or Primary Stage:

This is the initial stage which doesn’t mean that a person has breast cancer or any other disease but it is actually a stage to prevent the disease before its occurrence. In fact, this is where many dangerous diseases can be avoided. There was some great research done by our partners at the American Cancer Society.  Here's some examples of things that you can do.

  • Avoid all the unhealthy food items and stuff that can create a negative impact on your health
  • Help spread awareness as it is a very important factor. In fact, more health related awareness campaigns should be conducted to make people more aware of potential health outcomes
  • Immunization or many dietary measures can be taken at this stage of prevention

Secondary Stage:

This stage deals with two types of situations. The first stage is when you are in the process of detecting the disease and the second one is when you have already detected the disease. With the help of this Secondary prevention stage, cancer can be treated to avoid the future damages. The real purpose is to avert the disease by averting all of the risk factors. This is an important stage in your ability to fight cancer and can impact your future. This is the same stage when several tests and screening procedures are conducted to reach the real cause of the problem.  

  • As this stage is the detection related stage, many changes in your routine can make life easier for you, such as exercise and inclusion of healthy food in your daily routine
  • With the help of Physiological support many issues related directly with the disease can be sorted out

Tertiary Stage:

  • This prevention stage is the most important and critical stage. This is the treatment profession stage when a patient is going through the treatment of breast cancer or any other disease. This stage is used to help the patients and their caregivers to deal with the disease. Managing the disease and treatment of it is one of the crucial stages. This management includes behaviors, habits, depression management etc. We can further elaborate it by presenting few examples.
  • Cardiac or stroke reintegration programs, chronic disease management campaigns
  • Supporting campaigns and people who help others to get back in their routine life after indulging into serious diseases like cancer
  • Vocational trainings are also included to support breast cancer patients who are professionally working for people with jobs so they can start their professional life once again

Don’t think conventionally:

An out of the box approach here would be more supporting than the typical thinking to take up several things and situations.  Earlier breast cancer screening devices can warn you timely so keep it with you instead of waiting for the things to happen.

Changes in Daily Dietary Routine:

This is something that every individual should practice in his or her life. Regular exercise along with healthy diet is a must to avoid so many health issues. For women a healthy diet packed with all essential nutrients is really essential. Many new researchers have explored the link between a healthy diet and breast cancer prevention. Balanced weight can add to the benefits which can help a woman to avoid breast cancer.

Good News for Mothers:

Breastfeeding can be really very much helpful for women to avoid the breast cancer. It is really very amazing news for the mothers who are feeding their children. Estrogen levels remain stable when women use to breastfeed their babies.

Control Your Risks By Making Changes:

You can actually control your risks by making some healthy changes in your routine.  If someone is at the risk of getting breast cancer there are methods to reduce the risks to avoid the disease. These risks can be because of your age, genetic reasons or some other family history related issues.

You need to visit the consultant to talk about your risks and the changes you can make to lessen the intensity. You need to follow the healthy ways of life to avoid disease like breast cancer and also should look for the changes by using earlier breast cancer screening device.

Author Bio:

Jennifer is an enthusiastic writer and a researcher who tends to follow a path which leads her to the road of wellness. 

We are always happy to feature guest bloggers such as Jennifer and help promote your research and learnings to the community. Thank you Jennifer for contributing to the community! 

Recently, we had the chance to sit down and chat with one of our amazing customers. She's been fighting lymphedema and we were so inspired by her story. Please see below for some tidbits from our catch up with her! 

How has living with a PICC line been?

It has been good and bad, easy and difficult. It's a day to day thing with me. Sometimes, I hardly know it's there but at times I can't focus on anything but the discomfort I feel because of it. 

What did the PICC line still allow you to do?

Not much really.... it has a lot of limitations. I can't lift anything over 20lbs., lift my arm over my head, take baths or go swimming. There is a lot I can't do.

What did you wish you had known before getting your PICC line?

I wish they would have asked me if I had sensitive skin and or anxiety. Knowing that it dumps out right over my heart, kept me up at night when I first had it put it. It is also causing all kinds of lesions around the insertion site due to the skin being covered by sticky bandages. 

What do your friends and family think about the PICC line? Did they ask you about it?

Yeah, I usually let them know as soon as they notice the tube hanging out of my arm before they even have to ask. I'm sure it looks out of place and scary. I made sure to let my small boys know before I even had it put in so they wouldn't be frightened and so  they would also been extra cautious around my left arm. (They're boys and are kind of rough).

What was the toughest thing you faced with your PICC line?

The itching has been a constant struggle as it is crazy intense at times. 

How long have you had a PICC line for?

I've had it in for three months and have four more weeks to go. 

Why do you have a PICC line?

I decided to have it put in because my veins were starting to collapse on my left arm and they no longer can take blood from my right arm due to the removal of the cancerous lymph nodes (lymphedema).

What are some good online resources that you used on educating people on PICC lines / learning about them for yourself?

I found your website on google when typing PICC line covers and I also found good YouTube videos "How to shower with a PICC line" by Steven Leven, M.D 

Which was your favorite color of the Care+Wear PICC line covers?

I chose the tan and black covers as I feel they don't stand out and therefore my PICC line doesn't stand out. 

What did you enjoy about your Care+Wear PICC line cover?

I love how soft they feel on my skin and I also feel confident while wearing short sleeve shirts.  I don't like bringing any more attention or sympathy looks when I go out and the covers make me feel like my PICC line is not the center of attention.

 

Thank you so much for sharing your story! Remember that you're not alone and we're excited to be able to help! 

This week, we are partnering with Emily’s Entourage, an organization started by Emily Kramer-Golinkoff to raise awareness and funds for Cystic Fibrosis research.  Until December 3rd, we will be giving 10% of proceeds from our Violet covers to Emily’s Entourage.  The story behind this incredible organization is an inspiring one of hope, endurance, and the strength of grassroots organizations in achieving real change.

 Emily Kramer-Golinkoff is 31, already getting close to the life expectancy for people living with Cystic Fibrosis.  The disease is genetic and fatal, and affects 30,000 people in the United States and 70,000 worldwide.  The disease causes persistent lung infections and gradually reduces the ability to breathe over time.  A thick buildup of mucus occurs in the lungs, pancreas, and other organs, which clogs airways and can lead to infection by trapping dangerous bacteria in the lungs.  Over time, this causes lung damage and respiratory failure, and mucus in the pancreas can inhibit the body’s ability to absorb vital nutrients. Both Emily’s parents carry an Ashkenazi mutation, a genetic mutation which causes the disease. 

 Five years ago, Emily’s family decided to do something to help not only Emily, but the tens of thousands of others with Cystic Fibrosis worldwide.  They started Emily’s Entourage, a nonprofit organization that used Emily’s story to fuel fundraising efforts to improve and accelerate Cystic Fibrosis research.  It began with one video, made by Emily’s brother and sent to family and friends, with a request to donate and share her story.  The video campaign made $45,000 in one week and Emily’s Entourage has now taken in over $2 million in donations.  The organization, run by Emily and her mother Liza, organizes fundraising events and accepts online donations. 

Since the formation of Emily’s Entourage, Emily has become a spokeswoman for Cystic Fibrosis awareness and research.  She’s lectured at a medical conference at Stanford University, been honored at the White House, given a TED Talk, and been featured in magazines like People and on television.  Her focus is accelerating research on genetic defects, like the Ashkenazi mutation, that cause many diseases and disorders.  Emily’s Entourage has helped fund research on genetic mutations at McGill University, The Hospital for Sick Children in Toronto, the University of Alabama at Birmingham, and The University of California San Francisco.  Emily has also donated her own cells to research studies and is currently the only patient enrolled in a trial at the University of Alabama at Birmingham.   Although Emily worries that a breakthrough won’t come in time to help her, the work she is doing could be critical in helping people with Cystic Fibrosis in the future. 

At 31, Emily is down to 35% lung capacity, but she is seemingly unstoppable.  A cum laude graduate of the University of Pennsylvania, Emily has a master’s in bioethics and is tireless in her work with Emily’s Entourage.  She travels frequently, walks 10,000 steps per day, and is constantly on the phone or meeting with people to garner support for her cause.  Cystic Fibrosis may cause her to have to take extra precautions to avoid bacteria, go through three different procedures daily to combat the disease, take 30 daily pills, and inject herself with insulin four times per day, but she doesn’t let it slow her down.  Emily is the driving force behind Emily’s Entourage, and her strength and persistence makes it easy to see how the organization has risen to such prominence in the fight against Cystic Fibrosis.

 We are giving 10% of sales of our Violet PICC line covers to Emily’s Entourage all week until December 3rd and are proud to show our support for their work.  If you’d like to learn more about Emily and Emily’s Entourage, visit them online at www.emilysentourage.org

We wanted to write a quick blog post to say thank you to our entire community. You have helped us build an amazing brand and we wouldn't be here without your help and support. So today, we say thanks to all of you and want to share a little more on why we started the company and what makes our initial products so special. 

Almost 2.5 years ago, we set out to find a solution for loved ones. They had been told to wear tube socks over their PICC lines and just were not comfortable while wearing the tube socks. The socks were a constant reminder of what they had to go through and we felt helpless as we saw them struggle with their PICC lines. As we consulted with clinicians, designers and patients, we found an incredible opportunity to do something.

We realized that there was nothing on the market that actually served the needs of PICC line patients. In speaking with the nurses and doctors, we realized that breathability was a key factor for the PICC line. In fact, the dressing that you place over the PICC requires air for it to function!  That immediately explained why you couldn't wear the elbow sleeve that NBA players such as Lebron James wear! As we started to prototype designs and breathable options, nurses and doctors asked for a way to see the insertion site - it's important to monitor for infection / leakage and so they wanted to be able to view it at all times. We thought by creating a mesh window (patent-pending), we'd be able to solve for both the breathability and visibility issues.

We also found it odd that people were selling products without an EPA approved antimicrobial treatment. In a situation where dislodgement and infection rates are quite high (12-25% of the time!!), why would people want to put themselves in added risk? Why not be able to wear something that avoids this additional risk completely? Seemed like a no-brainer to us and so was something we absolutely wanted to do. While others may claim antimicrobial, they have never been able to share test results, talk about how long the treatments last or any details on their "antimicrobial" treatments. We not only have this handy, we like to share it with nurses and doctors and continually have them come back saying "wow, this is fantastic!" 

And of course - washing and drying. Why would anyone in the 21st century ever try and create products that must be hand washed and dried? It was imperative for us to make products that are machine washable and dryable and it's something that we have absolutely focused on. The last thing you want to do is have to hand wash your PICC line cover and then wait for it to dry! 

Finally, design has always been a huge component of what we do. We partner with leading designers and patients to make sure our products are products that you actually want to wear! For too long, companies have solely focused on function or finding an easy solution. People have taken the easy path instead of finding something comfortable and enjoyable to wear. We spend the extra time focused on finding the perfect solution that is both functional and fashionable to allow you to get back to being yourself and living your life. 

This is just the start of the innovative healthwear movement. We've started with our antimicrobial PICC line covers and antimicrobial port shirts. Leading hospitals, designers, and patients have already begun to take notice. But this is just the beginning. We're furiously working on new products to help even more people. We're going after any and all solutions - our ultimate plan is to be able to help you with whatever treatment or injury you have. And we'll never forget our initial products either. We're continuing to refine our current products as well. No product is ever finished - and your feedback and comments can only help make them better. 

So thank you for joining us in designing innovative healthwear and building products that enable patients to be people again. We can all make a difference and we can always do more. Like our community, we will never give up and never stop trying to make a difference - no matter how big or small. 

We wish you a happy thanksgiving and happy holiday season. 

Susan + Chat

Co-Founders, Care+Wear

Recently, we had the chance to participate in the 2016 Association of Vascular Access Scientific Meeting (AVA). We always love getting to speak with the great nurses and doctors and as we spoke with some at AVA, we realized that members of our community may be interested in learning more about what vascular access really means.

In general, vascular access procedures allow medical providers to easily access the veins of a patient’s body. Surgeons can use an AV fistula, AV graft, or PICC line or Temporary Venous Catheter for more temporary access.  These vascular access methods can be used on both adults and children and may be used for IV antibiotic treatment, chemotherapy, long-term IV feeding and blood transfusions.  Prolonged vascular access can be beneficial to the patient because it avoids countless repeated needle punctures, providing a less painful way for patients to receive long-term treatment.

An AV fistula is created by a vascular surgeon and is a connection of an artery to a vein for dialysis.  The arteries help to carry blood from the heart to the body while the veins do the opposite, carrying blood from the body back to the heart. The AV fistula tends to be placed in the forearm or upper arm, where it causes both extra pressure and blood to flow into the vein. The larger vein makes for easier and more reliable access to blood vessels.  An AV fistula helps to provide sufficient blood flow for dialysis, lasts longer than other types of vascular access, and is less likely to get infected or cause blood clots.  However, the AV fistula frequently requires at least two to three months to mature before it could be used for hemodialysis

The AV graft is a second vascular access method that many healthcare providers turn to if an AV fistula is not an option. The AV graft is a looped, plastic tube that connects the artery to a vein.  A graft can also be a man-made blood vessel used to help connect the artery and vein together.  The graft is usually ready to be used two to three weeks after the surgery.  One risk of using a graft is that it is more prone to infection and clotting than an AV fistula because it is a foreign object in the vessel.  Blood clots can develop and block the flow of blood through the graft, but if well cared for a graft can last several years.

For more temporary vascular access, a PICC line is often used.  A PICC line is a special type of catheter (a thin hollow plastic tube) that allows vascular access for IV treatments such as antibiotics, chemotherapy, and pain medications.  PICC stands for Peripherally Inserted Central Catheter and refers to the fact the catheter is placed peripherally (in an arm vein) with the tip of the catheter located centrally, as in a central vein in the body.  PICC lines are placed when patients need IV treatments for a duration of weeks to months.  

A Temporary Venous Catheter is also a more temporary form of vascular access.  A tube that inserted into the vein in the neck, chest, or leg near the groin, a Temporary Venous Catheter is only used for short-term hemodialysis.  Once the tube exits the body it is split into two tubes that have caps connecting the line that carries blood to the dialyzer and the blood back from the dialyzer to the body. Venous catheters are not suggested for long term use, as they can cause blood clots, infection or even vein scarring that causes veins to narrow. However, this method allows immediate hemodialysis which is necessary in some urgent cases.

There are many risks associated with vascular access which may lead to prolonged treatment or even surgery.  Common problems with vascular access include the potential for infection and blood clots which could reduce blood flow.  Both infection and low blood flow tend to happen more frequently in AV grafts and Temporary Venous Catheters than in other methods of vascular access.  Low blood flow caused by AV grafts may require an angioplasty to widen the narrow veins.  Temporary Venous Catheters are most likely to cause clotting problems and infection, but antibiotics are often used to prevent infection. Other medication such as Warfarin or other blood thinners may be used to keep blood from clotting in the catheter. 

There are many ways for patients to take care of vascular access devices and protect themselves while receiving treatment.  One of the most important ways is to make sure that the healthcare provider checks regularly for signs of infection or other problems.  Patients must also keep the vascular access sites clean at all times and follow the guidelines for care given by their healthcare providers.  Looking out for redness, being careful not to bump or cut the line, avoiding heavy lifting and avoiding applied pressure to the site can help ensure that complications do not occur.  Patients should also avoid wearing both jewelry and tight clothing as well as sleeping with the access arm under the head or body.  Maintaining breathability and visibility is important for caring for a vascular access site and preventing complications.  Our PICC line covers were designed with these guidelines in mind and provide an antimicrobial, comfortable, washable option and a mesh window for maximum breathability and visibility.  

We are committed to providing products that help patients with vascular access feel comfortable and care for their access sites.  We are always excited to share more on topics that interested you, so please reach out to us at wecare@careandwear.com with suggestions.

 

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