Articles & Stories

Living well with sickle cell disease: Palliative care is key

April 15, 2018

If your child has sickle cell disease, you know the heart ache of watching a child in pain and unable to enjoy the simple joys of childhood. There is a way to help your child feel better and live as well as possible: ask for palliative care.

Palliative care is specialized medical treatment for people living with serious illness like sickle cell. It treats the pain, symptoms and stress of the illness, with a focus on quality of life. Palliative care is provided by a team of doctors, nurses, social workers and other therapists who work closely with your other doctors to give you an added layer of support, based on your needs and what’s important to you. It can be provided at the same time as all other treatments to help you feel as well as possible and live your life. If you, or your child has sickle cell disease – ask for a palliative care consultation. The earlier the better.

Palliative care doctors are experts in pain and symptom management, and the most common symptom of sickle cell is pain. The pain can occur in joints like knees, elbows and hips, as well as in organs, and it can last a few hours, days or sometimes weeks. It usually comes on suddenly. These pain crises can be bad enough to put sufferers in the hospital. Your palliative care team can help with medicines and techniques to relieve pain, relax and get some sleep. The right pain management plan for pain crises could keep you or your child out of the hospital and safely at home. This can make a big difference for your child both physically and emotionally, and could support them in keeping up with school attendance, homework and hobbies.

People usually have the first signs of sickle cell disease in childhood, between the ages of five and fifteen. Sickle cell disease affects your red blood cells, whose job it is to carry oxygen around your body. Irregular sickle-shaped red blood cells can block blood flow, preventing oxygen from getting around the body. The poor blood flow results in inflammation and pain, infections, and sometimes damage to organs or strokes. But there is a lot that palliative care can do to help your child live better with sickle cell disease, so they can go back to being a kid.

Your palliative care team can also help you understand complex medical information and come to terms with what is happening to you or your child. There are some new treatment options for sickle cell, based on your child’s symptoms. By understanding what is important to your family, they can help you come up with a plan for treatment that will work for your needs.

Palliative care is available in hospitals, in outpatient clinics and in some areas, for home visits. You can find providers by looking at the Palliative Care Provider Directory.

Living with chronic kidney disease? Palliative care can help

March 25, 2018

If you have chronic kidney disease, you know that managing your symptoms and keeping to your treatment plan is hard on you and your family. Palliative care can help you cope by giving you an added layer of support.

Palliative care is specialized medical care for people living with serious illnesses like kidney disease. The goal is to improve quality of life for both you and your family by treating the symptoms and stress of the disease. Palliative care is provided by a team of palliative care doctors, nurses and other specialists who work closely with your other doctors. It is appropriate at any age and any stage of your illness, and it can be given alongside all your other treatments.

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Living well with serious illness: Cathy’s breast cancer story

March 11, 2018

Cathy, 62, has always loved jogging and doing step aerobics, but her true passion is tending to the flowers in her garden.

“I just love being outside and getting my hands in the dirt,” says Cathy, born and raised in Dayton, Ohio.

Cathy will be the first to tell you that gardening takes both patience and the willingness to start anew when a flower doesn’t grow like she’d hoped. “It’s okay when something doesn’t go your way out there. It’s all about adapting and moving forward,” says Cathy.

Cathy has had to apply those same principles to her own life as well. A diagnosis of stage IV breast cancer in 2012—the second time she had been diagnosed with this illness—halted her active and productive life. She faced an uphill climb of difficult chemotherapy regiments and an uncertain future.

After dealing with painful symptoms from the chemotherapy and the stress of managing the ups and downs of her battle for over four years, she asked for better care from her medical professionals. She was referred to palliative care who now work every day to get her back to her active life.

This is Cathy’s story.

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Treating pain and breathing challenges: Matt’s palliative care story

March 4, 2018

Matt is about to start another abstract painting. With classic rock music blasting in the background, he holds the brush between his lips, steadies his neck and presses the brush against the canvas.

A few months ago, Matt, 38, wouldn’t have believed you if you told him he’d be painting again. Fourteen years ago, a severe car accident left him paralyzed from the upper chest down. While his diaphragm wasn’t paralyzed in the accident, it was weakened significantly, which has caused Matt to have breathing problems that have grown progressively worse over time. Those issues coupled with severe nerve pain and the emotional stress of dealing with the traumatic events of the accident have been a daily struggle.

After a recent 13-week hospitalization for low oxygen saturation, Matt and his family asked if there was something more that could be done to help with the many symptoms involved with his physical issues.

They asked for palliative care.

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Improving quality of life for people living with congestive heart failure

February 11, 2018

Life with congestive heart failure (CHF) can be a difficult journey. Your symptoms may get in the way of day-to-day activities, your family members may worry about how to take care of you, and you may be unsure about what to expect and how to plan for your future. Palliative care can help make that journey easier on you and your family, so you can live as well as possible.

Palliative care is team-based medical care that is focused on improving quality of life for people living with serious illness and their families. It provides an added layer of support to control your pain and symptoms and to coordinate your care. Your palliative care team will work closely with your heart doctor and any other doctors who are treating you, to make sure your treatment plan is right for you. … Read More

Living well with serious illness: Gregory’s lung cancer story

January 28, 2018

Gregory has never been much of a runner. When it comes to exercise, he’s always preferred hiking. But tomorrow, along with his wife and two young children, he’s going to attempt to run his first 5K. For any of us who don’t run very often, a race like this would seem like a challenge in and of itself. But for Gregory—who has been living with stage IV metastatic non-small cell lung cancer for a little over a year now—it’s much more than that.

“If you had asked me back then if I ever thought I’d be here preparing to run a race, I wouldn’t have believed you,” says Gregory from his home outside Atlanta.

Back then, shortness of breath coupled with the painful side effects of a surgery to remove fluid in his lungs were consuming Gregory’s life. He needed support to relieve his symptoms and he needed help understanding how to best prepare for an uncertain future. Most of all, he wanted to get back to being the active person he always was.

That’s when Gregory found palliative care.

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Living well with serious illness: Barbara and Laren’s pancreatic cancer story

January 14, 2018

For 50 years—three years of courtship and 47 years of marriage—Barbara and Laren of Atlanta have always struck the perfect balance. Barbara, the retired nurse and eternal optimist, is a bubbly dreamer who loves spending her free time in her garden so she can “hold mother nature’s hand.” Laren, the scientist and down-to-earth realist, is guided by practicality and a strict adherence to facts and numbers. Yet ever since the two met riding bikes while in college, they’ve been inseparable.

“We are very different people but it’s always just worked for us,” says Barbara. “Laren is the calm and patient one,” she adds through laughter.

Barbara has always been her family’s rock. While raising four highly-accomplished children or helping Laren deal with the struggles of his heart condition, Barbara has always been there standing strong. But more than two years ago, Barbara was diagnosed with pancreatic cancer, and seemingly out of nowhere, the couple’s lives flipped upside down.

“Barbara was always the one who took care of us and held us together. Now suddenly things are reversed. That’s not easy,” says Laren.

This is a story about finding a sense of control amidst an uncertain future. This is a story about doing everything you can for the ones you love. This is Barbara and Laren’s palliative care story.

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Introducing the New and Expanded Palliative Care Provider Directory

January 9, 2018

Looking for palliative care in your area? Here’s good news: GetPalliativeCare.org has just launched its new, expanded Palliative Care Provider Directory for patients with serious illness, their families, friends and caregivers. The new Provider Directory is specifically designed for users to identify and locate palliative care providers in their area, quickly and easily, in both hospital and community-based settings.

Palliative care is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

Because of the growth, availability of, and demand for palliative care services beyond the hospital, the new Palliative Care Provider Directory lets users search for palliative care based on the setting where they can get the care: Hospital, Home, Nursing Home and Office/Clinic.

Along with the Provider Directory, the website has also been refreshed and relaunched. GetPalliativeCare.org is now easier to navigate and provides improved features such as webinars, briefings and multimedia presentations.

The Palliative Care Provider Directory is available at GetPalliativeCare.Org, CAPC’s online resource for patients and families. The website focuses solely on providing information on palliative care from the point of diagnosis.

Three ways palliative care teams help caregivers  

December 17, 2017

When your loved ones are facing serious illness, you won’t let them tackle the obstacles alone. Their struggles are your struggles. Their pain is your pain. Their fears are your fears. You listen to them, care for them, and walk their disease journey with them. You’re their rock on the days when everything seems too difficult to handle. You’re there to help them in any way you can.

But who helps you?

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Living well with serious illness: Karena’s colon cancer story

December 3, 2017

Many patients facing serious illness say that some of the most difficult things to deal with are pain, stress and a loss of control. This is because an illness like cancer, COPD, kidney disease or ALS can make an independent person feel helpless for the first time in their lives.

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