Month: April 2015

Nurse Inspired by Mesothelioma Survivor Who Comforts Other Patients

• Lisa Hyde-Barrett
• Nurse's Corner, Uncategorized

Survivors of mesothelioma and their stories are inspirational. From their stories we gather strength and renewed purpose. At a recent conference, a mesothelioma survivor talked about her journey, her leap of faith, and her life today, as well as the everyday challenges she now faces living with mesothelioma.  She  looked and sounded fabulous.

I watched her speak with and comfort a family member of another mesothelioma patient. Their story was not as positive, but she was powerful with the words that she shared. She left a lasting impression on those that attended the conference. Her road has been filled with challenges, serious issues, and adjustments that she and her family had to make, but she delivered her message with grace, dignity, and gratefulness.

As she spoke, one thing that struck me was her inhalation of breath, it was part of her life now with one lung. She spoke with truth about her life before mesothelioma, the diagnosis, the fear and her journey. She blindly put her faith in a surgeon almost ten years ago, when the medical world knew so much less about mesothelioma. She said she had no choice, but her treatment center gave her hope. I am sure it must be difficult to know whether the option you pick is the right choice. Clearly, this woman made the right choice for her.

As part of her legacy, as a young, long term survivor of mesothelioma, she always has her hand extended to help others. When she speaks with someone, she never really speaks about her situation. Instead she listens intently, and she puts her feelings and her journey aside while she puts herself in their shoes.

As a professional nurse, I find it amazing to see these patients think about somebody else when their lives have been turned upside down. She spoke about how community is so important and how that helped her and her family recover.

We all consider her cancer free, but she is still in the nucleus of the mesothelioma community continually giving back. Possibly, that is part of the recipe of a long term survivor.

If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].

Dad Continues to Bounce Back From Setbacks During Mesothelioma Treatment

• Joseph Belluck
• Family, Mesothelioma

It was time for Dad to start another round of radiation treatment in Philly. This treatment was supposed to relieve some pain in Dad’s side by hopefully shrinking the cancer. He would have 14 treatments, basically most of February minus weekends. There was going to be a lot of traveling back and forth to get treatment since Dad prefers to be at home and not at my place in the city, or the Hope Lodge that is nearby. My mom was able to get a leave of absence from work to drive him back and forth each day because, unfortunately, Dad can no longer drive himself to treatment anymore.

Dad got through the first week of treatment before the nurses at UPenn noticed that something wasn’t right. Each day, while he waited for treatment, one nurse would take his vitals and check in with him. On the fourth day of treatment his vitals were taken and his blood pressure was 80/30. He was immediately admitted to UPenn Hospital and tests upon tests were done.

Dad was found to be in renal failure and was in critical condition. There were a few reasons that his kidneys could have failed: severe dehydration, his blood was too thin, or the cancer was growing and causing a blockage. After countless tests it was determined that it was a combination of his blood being too thin and dehydration. This was a relief that cancer wasn’t causing any blockage. They had also conducted a scan of his brain to be sure that cancer did not spread there. They were concerned about this because he was very disoriented and confused about what was going on.

Dad stayed in the hospital and continued treatment while he was there. At first they were unsure what would happen, would his kidneys come back? Would he come out of the state of confusion he was in? There was a lot of uncertainty and it was scary to not know what would happen.

Despite the uncertainty of his hospital stay, we were glad that he was there receiving the best treatment that he could get. All of his Mesothelioma doctors were close by and would stop in each day, and he was able to be transported over to the neighboring building to receive treatment. My mom was also able to stay in the hospital room with him to keep him company and to feed him since he would not eat on his own.

He gave us a pretty good scare, but once again Dad bounced back. He was released from the hospital 11 days later with fully recovered kidneys and only three days left of radiation.

Dad continues to amaze me with his will to fight against this nasty cancer.

Know more about Mesothelioma and how you can deal with it.

Dad Keeps Up the Fight Through More Mesothelioma Complications

• Joseph Belluck
• Family, Mesothelioma

While living with mesothelioma there are so many worries on your mind that you do not even think about the small complications that could go wrong. Being focused on how fatigued the person is and how much pain they are in, it’s hard to notice other symptoms that occur.

The first signs experienced by my father are nausea and vomiting and we all knew something was wrong, but he didn’t do anything about it. This happened only one week after he was out of the hospital recovering from blood clots in his lungs. The doctors just told us to monitor him and make sure he was still eating and drinking. This was difficult because he had no appetite and could not keep anything down. One thing I was watching for when I was home on the weekends was if he was dehydrated.

I noticed he was dehydrated as soon as I came home one weekend. I finally got him to agree to go to the emergency room to get checked out because he was not eating or drinking anything and was still getting sick. He was checked into the emergency room and was treated for severe dehydration with multiple bags of fluids.

Another concern the doctors had in the emergency room was if he had C-diff because of the many occurrences of bowel movements. They tested him for that, and held him there until his results came back. Having C-diff would have caused a delay in him starting his next treatment. Thankfully this test came back negative and he could go home that night after being rehydrated and prescribed more anti-nausea medicine.

It is so important to monitor your loved one closely for any small symptom. Something small could turn into something very harmful. If my dad hadn’t gone to the hospital that night, his kidneys could have failed from dehydration and postponed receiving any treatment. With this aggressive cancer there isn’t a lot of time you have to play with in between treatments.

Know more about Mesothelioma and how you can deal with it.

Another Scary Bump in the Road During Battle with Mesothelioma

• Joseph Belluck
• Uncategorized

Amanda’s father passed away on March 16, at home surrounded by his family. Amanda had written several articles about her father’s ongoing treatments and his determination that had not been published before his passing. She believes it is important for families dealing with mesothelioma to learn about her father’s ups and downs during his last six months. Here she discusses an issue with his Coumadin levels that sent him to the hospital. The next two weeks she’ll cover other challenges and lessons learned while fighting the cancer.

While Dad was still feeling up to doing household chores, he was loading up the fireplace with my brother Andrew. He bent over to pick up a log and collapsed. Andrew rushed to get his oxygen because Dad was gasping for air and was unconscious. It was very hard for him to regain his breath again, and he did just not feel right, so my mom took him to the hospital.

The doctors kept Dad in the emergency room for a few hours before deciding to admit him. They found that his Coumadin level was too high, and his blood was too thick. He had a few clots in his lungs and this was making his breathing very difficult. He ended up being in the hospital for four days recovering and getting his Coumadin level to where it should be. When a cancer patient is on Coumadin their INR levels have to be monitored regularly. Dad’s tests were too far apart and he should have been monitoring it much more closely with his local doctor.

Because of this visit, Dad ended up switching to the injectable Lovenox shots. These do not have to be monitored, and it does not interact with the patient’s diet like Coumadin. This is one less thing that needs to be monitored and one less trip to the doctor to have his INR level checked.

There are no “how to” guides on how to monitor and keep track of all symptoms that a mesothelioma patient could encounter. My advice would be to keep a daily log of symptoms and a list of conditions. The more you are educated about your condition and the more information you know about others living with Mesothelioma, the more aware you are going to be about your own symptoms. Also, with the amount of emergency room and doctors visits, it is a good idea to keep a log of names of the medications and dosage of each. This makes it easy when dealing with different doctors and keeping everyone on the same page.

Veterans Still Facing Long Wait Times at VA Facilities Despite Reforms

• Brian Eckert
• Veterans

A year after it was revealed that sick patients at Veterans Affairs (VA) hospitals were dying due to lack of care, the number of patients waiting more than 30 to 60 days for medical appointments remains flat, reports the Associated Press.

“VA statistics show that the number of patients facing long waits has not declined, even after Congress gave the department an extra $16.3 billion last summer to shorten waits for care,” writes the AP.

In April 2014 CNN reported that 40 U.S. veterans died waiting for appointments with the Phoenix VA health system. A retired clinical director from that system told CNN that the Phoenix VA deliberately covered up delayed veteran care through a secret wait list.

The scandal grew to include VA facilities nationwide. An investigation by Senator Tom Coburn released in June 2014 concluded that over a 10-year period, VA misconduct resulted in 1,000 or more veteran deaths. An internal VA audit ordered by the White House found patient wait time manipulation at more than 60 percent of VA facilities investigated. It concluded there was a “systemic lack of integrity” within some facilities.

The findings resulted in the resignation of VA Secretary Eric Shinseki and the $16.3 billion Veterans Access, Choice and Accountability Act. Signed into law by President Obama last August, the Act aims to speed up veteran access to healthcare by funding the hiring of more health care workers and allowing patients facing long delays to receive private sector care.

But according to a new report by the Associated Press, from August 1 to February 29 nearly 894,000 VA medical facility appointments did not meet the agency’s 30-day timeliness goal, including around 230,000 appointment delays of more than 60 days.

Delays were unequally distributed across the VA network, with a high percentage clustered in the Southern states of Tennessee, Kentucky, North Carolina, Virginia, Georgia, Alabama, and Florida. Facilities in these states accounted for fewer than 6 percent of patient visits but were responsible for 20% of the appointments delayed 60 or more days. Long wait times were also found at facilities in New Mexico and Colorado.

It’s worth noting that the VA is dealing with rising demand. VA system enrollees increased from 6.8 million in 2002 to 8.9 million in 2013. The VA added 800 doctors and 2,000 nurses between April and December and is building new health centers, but demand still seems to be outpacing capacity.

“We are doing a whole series of things…to deal with the immediate issue,” Sloan Gibson, Deputy Secretary of Veterans Affairs, told the AP. “But we need an intermediate term plan that moves us ahead a quantum leap, so that we don’t continue over the next three or four years just trying to stay up. We’ve got to get ahead of demand.”

The VA provides health care to nearly 9 million veterans. It also offers monthly compensation and other benefits to veterans.

You can use our online tool to find out whether you qualify for VA benefits.