Tag: cystic fibrosis

Rae Anne was at a concert with friends when she found a lump on the side her neck. Worried, she left and scheduled various doctor appointments to figure out what it could be, as she didn’t have any other symptoms. Over the course of a few weeks, the lump grew, and she was diagnosed with stage 4 head and neck cancer.

After several rounds of chemotherapy and 35 radiation treatments, Rae Anne was told by her oncology team that she needed to wait at home for 3 months until her next scan, in order to see if the treatment worked. While living with anxiety and side effects from treatment, Rae Anne received a phone call from the palliative care team at the hospital where she received treatment, to schedule an appointment. She had never heard of palliative care and didn’t know what to expect.  … Read More

At a clinic in Dayton, Ohio—which provides chemotherapy treatment to cancer patients—there’s a man known by all as “Rock Man” Willie. When he’s there, Willie stops at each station to chat with people who could use a good distraction. He carries with him small hand-painted rocks he’s designed, and he hands them out to cheer up others who, like himself, are facing cancer and other serious illnesses. In return for these support rocks, Willie only asks for one thing: a smile. … Read More

By Andrew Esch, MD

If you are living with a serious illness that involves severe or persistent nerve pain, you know that it can take a toll on your quality of life. The pain can prevent you from everyday activities and doing things you enjoy. It can cause depression and anxiety. But it doesn’t have to be this way. While no single treatment works for everyone, there are ways to manage nerve pain to help get you back to living as fully as possible.
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“I wish I could have videotaped JoAnn in her first palliative care session so that she could look back and see how far she has come,” says Mark Curtis, an advanced practice registered nurse and palliative care specialist. Mark has been helping JoAnn—a woman in her sixties—deal with the symptoms and stress of non-Hodgkin’s lymphoma since 2016. Today, JoAnn is well enough to help care for her grandchildren and take part in charity walks, but when she first arrived to meet with Mark, these goals seemed unobtainable. 

This is JoAnn’s palliative care story.  … Read More

If you care for a loved one living with Alzheimer’s disease or another form of dementia, and are looking for ways to help them cope with loss in memory and brain function, you’ll want to know about a program called Music & Memory.  … Read More

By Andrew Esch, MD

If you have colorectal cancer, you know that your pain, symptoms, and the side effects of treatments can take a toll on your quality of life.  Therefore, they can stop you from doing the things that are important to you. They can also lead to unwanted hospital stays. But palliative care can help. … Read More

On good days, you can find Paul in his house intently focused on one of his woodworking projects. It’s hard work, but it’s a labor of love.

“I’m not the type to sit still. I’m at my happiest when I’m working with my hands and creating something new,” says Paul.

The fact that Paul is able to get up and do woodwork is something even he couldn’t have imagined five years ago when he was diagnosed with Ewing sarcoma—a rare cancerous tumor that grows in the bones or in the tissue around the bones. A tumor in his spine caused immense back pain, made worse by symptoms from chemotherapy, radiation, and several spinal surgeries. He couldn’t do even the smallest of tasks.

That’s when he was referred to palliative care. … Read More

Would you like to know about a medical team that can help you manage the symptoms and stress of living with a serious illness?  If you have cancer, COPD, heart or kidney disease, Parkinson’s, or any other serious illness, you might benefit from palliative care. If you don’t know much about it, watch and listen to the webinars, podcasts and videos on GetPalliativeCare.org.  You will learn from other patients, caregivers and palliative care experts as they explain how a referral to a palliative care team can help provide improve your quality of life. … Read More

When Kelly—a central New Jersey woman in her early 30s—is asked what brings her joy, she doesn’t have to think very hard.

“It’s definitely being with my young son. He’s my world. His smile lights up my life,” says Kelly.

Since she was 12 years old, Kelly has faced an array of medical issues. Over the years, she has dealt with lupus, mitochondrial disease, a clot in her lung and main vein to the heart, and autonomic neuropathy. These issues have caused additional heart and bladder problems, as well as gastropareses, which affects the normal movement of muscles in the stomach. Kelly had done her best to deal with the chronic pain for nearly half her life, but in 2016, the issues became unbearable, and even the smallest task became an issue. … Read More

If you or a loved one is living with a serious illness and struggling with pain, stress or other symptoms, a referral to a palliative care team can help provide relief and improve your quality of life.  While a doctor referral is usually necessary, here’s a place to start: the Palliative Care Provider Directory on GetPalliativeCare.org.  The Provider Directory is designed to help you find and locate palliative care in your area, quickly and easily.  

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