Tag: palliative care and lupus

As a speech language pathologist for young children, Ilene’s skills as an educator, careful listener and problem solver were keys to her career success. These factors also have played an important role for her through the many years she’s been treated for advanced ovarian cancer. It was a surprise diagnosis for the 68-year-old New Yorker that came in the fall of 2015 and changed her life dramatically.

She had a growing number of symptoms and side effects from treatments and surgery. When her cancer doctor referred Ilene to the palliative care team, Ilene didn’t know about the medical specialty. She had no idea how important it would be over the many years of her cancer journey, which included several recurrences. But ever-the-educator and problem solver, she went to the first appointment hoping for help to address many sources of discomfort.  … Read More

By Andrew Esch, MD

Did you know that most large hospitals in the U.S. have a specialized medical team that uniquely cares for people living with serious illnesses? If you or a loved one has any type of cancer, heart or kidney disease, dementia/Alzheimer’s disease, or any other serious illness, you should know about this extra layer of medical support. It’s called palliative care and focuses on relieving symptoms and stress that so often come with these kinds of illnesses.  … Read More

When Sarah, a mother of two young boys, was diagnosed with metastatic colon cancer at age 34, she was shocked and overwhelmed, but also determined to find the best care possible. She fought for a cancer doctor who would support her at every turn, and found specialists to address the many consequences of treatment she experienced. She enlisted her own pharmacist to help her understand and adjust the numerous medicines to minimize side effects. She found a pain specialist and physical therapist to help with difficult symptoms and side effects of treatment, and other doctors to round out her care team. She was willing to do anything to remain active and be able to care for her sons. 

“I think any serious illness is going to make a patient assess their life, their values, and their purpose,” says Sarah. “Patients deserve the highest level of care available and I wasn’t going to settle. Not for me and not for my children.”  

One day, she was telling a friend about the hand-selected care team she assembled to give her an extra layer of support through the cancer journey.  

“That sounds a lot like palliative care,” the friend said.  This is Sarah’s story.  … 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

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

The number of medical and patient support organizations actively recommending palliative care continues to grow for people living with serious illnesses, and for good reason: palliative care focuses on relieving the symptoms and stress of the illness, and the goal is to improve quality of life for both the patient and the family.  … 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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