Veteran's FYI

[SOBALSO]

I had a right lower lobectomy in Feb of 2019 followed by chemo. I never fully recovered from the procedures. As a matter of fact my breathing became worse after the operation and the muscle fatigue was devastating at times. It could take up to two years to heal I was told. Weight loss was another problem for me, which it is for most people who have cancer and chemo treatments. So I accepted the answers Then I was hospitalized with pneumonia in September of 2020 and my pulmonolgist insisted it was aspiration due to acid reflux. I was placed on acid curbing drugs but nothing seemed to work the dypsnea was getting worse. I was hospitalized again in January of 2021 for breathing issue's but this time I insisted on being admitted and demanded a neurological work up. After spending two weeks and numerous testing in the hospital I was diagnosed with ALS. After answering many ALS questionnaires I was put in touch with the VA.. Why the VA I asked? It was explained that more and more veterans are being diagnosed with ALS each year and that they don't know the cause as yet only that it's veterans related. My Navy time was 58 to 62 with time spent in the Mediterranean and southern Europe.

I am still living at home and get around with the help of a walker and wheel chair. I am now under the care of the VA and for the first time in my life on 100% disability. Looking back I think I may have had ALS for at least four years thinking that the muscle, weight, and balance loss was a product of old age.

There is also good news in this story, all test show that I am free of cancer. One more thing, I did catch the Covid and managed to survive that thanks to the care of my family doctor.

Only time and science will give us answers to the ALS questions.

[Feelingblessed2013]

I am sorry that you are going through all of this, but thank you for sharing your story. You got me thinking about my sister in law as she too was in the navy. She hasn't had lung cancer, but her lungs are really bad, she walks with a walker when going outside of the house. She is in constant pain, her energy is so low most days that all she wants to do is sleep. All those years on inhalers is weakening her bones and she is only in her late 50's. I think I need to do some research on ALS.Again, I am very sorry that you are going through all of this, but thank you for sharing your story.

[Denzie Moderator Volunteer]

Thank you for sharing your experience. Like Katherine you've got me thinking about a family member who was Navy and has been having some health issues.

This highlight it's so important that we share our stories. Cancer doesn't exist in a vacuum. People with cancer can and do develop other serious diseases and doctors should not assume that any ache or pain is cancer related.

I applaud you for doing such an excellent job advocating for yourself. Congratulations on you NED status. I'm glad you have that victory to celebrate!

[SOBALSO in reply to Denzie]

Thank you and Katherine for your kind words. You are absolutely correct, If you have/had cancer your care givers are focused on your specific cancer and its side effects and they should be. You know your body and sometimes you need to get your team headed down another road. I went on every medical website that I could to describe my symptoms. I actually thought MS came the closest to my symptoms because ALS doesn't strike 80 year Olds. Boy was I wrong.