Author: Lisa Hyde-Barrett
ADAO’s Mission Impresses Mesothelioma Nurse
The Asbestos Disease Awareness Organization was co-founded by Linda Reinstein and Doug Larkin. This organization was founded by the courageous duo who watched their loved ones pass away from the terrible illness caused by asbestos: mesothelioma. Linda’s husband was diagnosed in 2003. He endured chemotherapy and had to undergo multiple surgeries where his left lung, pericardium and diaphragm were removed, and his diaphragm was replaced with goretex. Sadly, he passed away in 2006 leaving behind his wife and daughter. Doug Larkin also lost a family member to this dreaded disease, and now he works tirelessly to serve his memory.
Together, the two have taken their grief and turned it into a positive example of helping the mesothelioma community and in fighting the world of asbestos. They are more than just a couple of individuals trying to prevent the spread of asbestos: they know what it feels like to lose a loved one to this disease and they have seen it happen to too many other families. Linda and Doug have a mission to ban asbestos globally. The ADAO started small, but today it is a 501c nonprofit, and is the largest U.S.- based independent asbestos victims organization.
The vision of ADAO is to eliminate asbestos-related diseases, like mesothelioma. ADAO works with public health organizations, healthcare workers, and many others to help ban asbestos. ADAO has three initiatives: education, advocacy and community.
You can find Linda at most mesothelioma conferences reaching out to help others who have been affected by the terminal cancer and other asbestos-related diseases. This month, she led the 12th Annual International Asbestos Awareness and Prevention Conference in Washington DC.
Since 2005, the annual conference has brought over 300 speakers ranging from victims, lawmakers, and experts to share their information. Gathering so many experts can only bring more education, awareness and long-lasting relationships.
Thank you for all who continue to work hard at fighting this dreaded disease and at educating the world about the harm asbestos is causing in our communities.
By increasing awareness of asbestos, the hope is that other people’s loved ones will not suffer as theirs did. For more information about the good work from this organization, visit the Asbestos Disease Awareness Organization website.
Constipation Should Be Addressed Quickly Says Mesothelioma Nurse
Understanding what to expect from mesothelioma treatment can be confusing and difficult to understand. Patients and family members seek out the latest cutting-edge research and clinical trials in which to participate with the goal to increase quality time with their loved ones. But, regardless of the selected treatment, care comes with its own set of issues. Some of the common issues that mesothelioma patients face are pain, shortness of breath, fluid status issues, and depression.
One of the problems that occurs all too frequently for mesothelioma patients, but no one wants to talk about, is constipation. Constipation is emotionally upsetting and embarrassing to discuss. But, this common problem that can be daunting to patients and families dealing with mesothelioma treatment is vital to recognize and immediately address.
According to the National Institutes of Health and the National Digestive Diseases Information Clearinghouse, the definition of constipation is a “condition in which a person has fewer than three bowel movements a week or has bowel movements with stools that are hard, dry, and small, making them painful or difficult to pass.” Everyone is different, and for some people, not going once a day may make them think they are constipated.
This condition is very common with 15% of the U.S. population being affected, and is very common post-surgery. The most common causes for constipation are a diet low in fiber; a lack of exercise; medications, especially pain medications; and changes in daily routine. Post-surgery pleural mesothelioma patients, or any post-surgery patients, can have all of these factors.
Treatment for constipation can include a change in diet and exercise habits, or change of medication. When taking pain medication, it is very important to be aware of the possibility of constipation. Laxatives are usually ordered by your physician and should be taken along with the pain medications. Common laxatives are available by mouth and come in many different forms, including pills, liquid, and powder.
Constipation might seem like a minor problem, but left unrecognized and untreated, serious complications can arise. As an example, a patient I called recently was constipated with a distended abdomen and he felt miserable. He had to be readmitted to the hospital for care. He and his family had been so focused on pain and fluid restriction that constipation snuck up on them.
Mesothelioma patients and families need to realize how this common problem is one that they should be aware of and discuss with their mesothelioma team. When dealing with a complicated disease like mesothelioma it is important to remember the basics and the role they play in a successful recovery.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
Mesothelioma Patients May Question Their Mortality
He was in the ICU from a complication after his surgery. His journey with mesothelioma had begun just three months earlier. He had presented to his local doctor with what he thought was pneumonia- it wasn’t. Previously healthy, he was diagnosed with epithelioid mesothelioma. He and his family had researched mesothelioma, came to an academic center, had surgery. Things had been going well and then he had an unexpected complication – treatable – but unexpected.
Physically he was recovering, mentally he was devastated. He knew about the possibilities of complications since they had been explained in depth to him and he had accepted the risks of the surgery. Before the complication he was beginning to see that he and his family could cope with and live with mesothelioma. He was beginning to feel that he had regained control of his life. Now, he lies in the bed wanting to know if death was imminent.
The psychological toll that the complication had taken on him was worse than the physical setback.
As the nurse, I know that he will get better from the complication physically, I can point out all the evidence that it will happen, he is ex-tubated, his vital signs are good, he is not on oxygen, he will soon be transferred to the step down unit. All positive signs that he is on the mend.
What about his mental state? He had done everything that was asked of him after surgery, and had landed back in the I.C.U- what does that say about his prognosis? Once diagnosed with cancer, and when having treatment, finishing treatment, whether it be surgery, chemo, radiation, or clinical trial, in the back of every patient’s mind is the question, “When will I have a recurrence?” Every patient needs to process and deal with this possibility.
The way to help is to listen and support the patient. Know that everyone responds to complications differently. Point out the positives in the patient’s situation, for example, physically you are better. Acknowledge that it takes time to adjust to a diagnosis of cancer, and that there are ramifications. A cheery pep talk might not be appropriate, but simply pointing to the facts might help. Like every mesothelioma tumor is different, every patient’s reaction is different. It is important to accept that and adjust your approach.
I am happy to report that the mesothelioma patient in ICU did get physically and mentally better. He is adjusting – time, family love, and support can be the best medicine!
Mesothelioma Nurse Encourages Patients to Find Their Strength
Most patients who have mesothelioma will need to go to rehab facilities after surgery, or at different points on their journey. These experiences are as varied as the patients themselves. Recently, while visiting a patient in rehab, I noticed a sign that read, “Find Your Strength.” Having been to this rehab many times, it struck me that I had never noticed this sign before.
Reflecting on the message, and the mesothelioma patient I was visiting, it struck me how much physical and emotional strength is required to deal with mesothelioma. The physical strength can be quantified by how the patient is breathing, his oxygen level, how well he is walking, appetite, pain level, and generally how they are feeling. The physical strength to deal with mesothelioma often comes with time, therapy, and patience.
The strength to deal with mesothelioma on an emotional level, however, can be daunting. What are your coping mechanisms? Are you a talker? Do you exercise, run, swim, walk, and did that help you to deal with stress before your diagnosis? Do you know what your emotional strengths are?
During crises in your life, you deal with things that you never thought you had the strength to get through. Your support system may be helpful at this time, but you need to let them know what you need.
The mesothelioma patient that I was visiting seemed to have found his strength. Tucked away in a sunny corner of his room, with his eyes closed listening to his wife reading to him, I found it hard to believe he was the same person that had left the mesothelioma hospital one week ago. He had been weak physically and emotionally withdrawn. He had reluctantly agreed to rehab.
Now, the scene in front of me was of someone at peace. His wife was reading from a book of spiritual readings. He appeared to be reflecting on the message and her voice. As the visit progressed and we talked of all they had been through, he made a request: “Say a prayer for me.” As I responded yes, the sign at the entryway came to mind.
“Find Your Strength.” This patient and his wife found theirs together.
Deja Vu: Woman Faces 2nd Mesothelioma Diagnosis in the Family
One of the most rewarding parts of being a nurse is meeting different people, hearing their stories, and learning from them. This past week a couple in their late 60’s, he has pleural mesothelioma, were sharing how mesothelioma had been a part of their lives for quite a while. Unlike most victims of mesothelioma, though, they had been aware of the devastation that mesothelioma causes: the woman’s father had died of mesothelioma nearly forty years ago.
At that time, her father was told by his doctor to go home and get his affairs in order. She remembered how devastating the news, and his subsequent death, had been on her family. Her father’s diagnosis turned into a death sentence that happened within six months of his diagnosis.
In the fall of 2015, after her husband had not been feeling well, he was diagnosed with pleural mesothelioma. He was told by his local doctor that he should go home and get his affairs in order. But once this wife and daughter of mesothelioma victims was able to process the latest news, she sprung into action. Her husband’s diagnosis and care was going to be different.
Thirty years ago we did not have the internet, and this woman refused to believe that no progress had been made and that, still, nothing could be done. She found some very helpful web sites, researched some leading doctors in the field, and attempted to find any clinical trials that might apply to her husband. Together they set their plan into motion.
She also located support for herself and her husband in dealing with mesothelioma. None of these resources were available to her father or her family so long ago. As she talked about what options they now had with mesothelioma, she shared her shock that her husband and father had been told the same thing. Now, with the benefit of the internet, and progress with mesothelioma, they felt they had options.
Listening to her story, I was struck by how much still needs to be done to help the newly diagnosed mesothelioma patient. It is not easy to wade through all the on-line information, it it time consuming and not all the information is current or accurate. Clinical trials are sometimes difficult to understand, and the process to becoming enrolled in a trial, and researching options can be overwhelming. Dealing with a new cancer diagnosis and all the changes that brings in your world is a very stressful time.
The chances of a woman having a father die of mesothelioma and then her husband being diagnosed with the same disease have to be astronomically low. But this time the woman and her husband have different options and are going to fight back. Hopefully, the outcome will be much different.
If you have any questions regarding any aspect of your mesothelioma treatment, feel free to email me at [email protected].
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