Advocacy Stories

Patient Advocacy is a process of acting to insure that a patient is served adequately by the health care system. A Patient Advocate is one who promotes the cause of another person and safeguards the rights and supports the interests of the patient.  Here are some examples of real life situations that show just how important it is for a patient to have a Patient Advocate.

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If your body doesn’t feel right, it isn’t!

I debated whether I should post this or not. I’m pretty private. Since October, I was experiencing some chest and arm pains. I went to the ER in California where I live. They did a stress test, blood work, sonogram and other work ups. I was told it’s not my heart and to take some advil for the pain events. That visit was $12,000 dollars, and I was responsible for $3000.00.

I visited my pulmonologist who said it wasn’t related to my lungs. My next plan was to see my GI doctor thinking it could be GERD or Acid reflux.

Six months later, I’m visiting my mom in Florida and doing lots of repairs on her house. While climbing out of the attic, I had tremendous pains and almost fainted on the ladder. My mom gave me a nitroglycerine pill and the pain went away. OH OH. I immediately went to the ER here in Florida and they put me on a nitro IV. The next day I had an angiogram and a stent placed in my 99% blocked “widow maker” artery. Dr. said I could have died at any moment and I wouldn’t have lasted another week.

I guess the moral is, if your body doesn’t feel right, it isn’t and always get second opinions right away.

 

Mesothelioma.net brought hope

Virgil Anderson was recently diagnosed with mesothelioma cancer, which is a cancer caused by exposure to asbestos. He came in contact with asbestos while working on his family’s farm, but he was mainly exposed during his job as a press operator in the manufacturing of stovetops. Many other groups of people come in contact with a lot of asbestos and are also at risk.

When he was diagnosed with mesothelioma he needed immediate medical attention. He found a few websites on the internet that are supposed to help people with mesothelioma cancer but nobody got back to him.

Then he found Mesothelioma.net. Even though he contacted them on a Sunday one of their patient advocates gave him a call back within minutes. They gave him a great deal of helpful information on doctors and resources available to him.

As a result of their website, he is now being treated at the national cancer institute and the patient advocates have even provided him with financial assistance so he could afford a place to live during his chemotherapy. If he had not reached out to this website he would likely be homeless and more importantly in Hospice waiting to die. These people gave him his only chance at survival.

Fighting for Our Child

A father was playing ball with his 2 young children. His daughter got hit in the head with the hard ball. She seemed to be fine. On the third day after that incident, she started holding her head and crying that her head hurt her. The parents took her to the Emergency Room of the local hospital. Despite giving the attending doctor the history of the head trauma, the doctor diagnosed her as having a virus and proceeded to discharge her home to rest. The parents just did not feel comfortable with that. Their gut instinct told them that something was seriously wrong. When they asked the doctor to order a C-T Scan of the head, he got insulted and insolent. They had to refuse to take their child home and demand that the test be done. The doctor was totally surprised when the test showed bleeding into the brain, most likely as a result of the brain trauma 3 days before. Had the parents taken their child home to sleep off the virus that night, their child might never have woken up.

Benefits of Strong Advocates

I recently spent nearly a week at UNC Hospital in Chapel Hill, NC, with my son Phil who was being worked up for a liver transplant. We stayed at a family home similar to a Ronald McDonald house for the families of adult patients. Frequently the patients join their families at the home while they are receiving out-patient care. I started noticing that every single patient there had a strong full time patient advocate – usually, but not always, a family member. People wearing masks, people with no hair… you know they are cancer patients… and they are always in the company of somebody strongly advocating for them. There was the husband of the woman with burns admitted for her third surgery who figured out how he could do his job on line so that he could be at his wife’s bedside during her entire hospitalization. It made me wonder where the patients are that don’t have advocates. Are they not making it to a more sophisticated medical center? Are they not having access to the same level of care that my son is? I found that thought very disturbing. Where are the patients that don’t have someone to speak for them? There is obviously a direct correlation between having a strong advocate and getting the best care possible. Everyone needs an advocate to speak for them when they can’t speak for themselves or they don’t know the right things to say or do.

Surviving Cancer

My husband is a two time throat cancer survivor. We have learned the hard way about end of life conversations and ended up enjoying life. Never say the last amen!

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