I did not expect this! Never could I have imagined, nor did I think it was possible. I did not expect this and defiantly not now. Living in chronic illness with COPD(1) and Pulmonary Mac(2) leaves you fighting everyday to breathe with a life less than enjoyable. To breathe without thinking of it is not a luxury I have. Every breath I take, I am very aware of it. I examine how good each breath is. Did I rattle, or struggle to inhale and exhale. Every breath I take matters and is crucial to my wellness. I do not take breathing for granite, where most people never even think about breathing. Is Cannabis giving me a life I never expected plus never thought possible?
In 2016, I contracted Pulmonary MAC lung disease on top of already having COPD (Chronic Obstructive Pulmonary Disease) for over a decade. My prognosis was less than desirable. My name had already been submitted to St Josephs Lung Transplant Unit for a lung transplant a few years earlier. After I had contracted MRSA pneumonia during a hospital stay placing me in ICU. I was denied being put on the transplant list due to an FDA approved drug called Oxycontin. A medication prescribed to help maintain my chronic pain from CRPS(3). Now that my body is unable to handle the treatments for MAC what is going to happen to my health and life?
For this reason I was referred to the CDC(4), which is always a little scary. I was first introduced to the CDC in 2009 for MRSA pneumonia and on 2 subsequent hospital stays with each for a different serious hard to treat infection. Let’s just say I attract the unusual difficult to treat illnesses.
CDC Treatment Plan
I went to this appointment, understanding they most likely would not have any treatment options to offer. The CDC explained treatment used to treat MAC is the same treatment we have used since the early 1900s to treat Tuberculosis (TB). A cocktail of 3 very strong harsh antibiotics with which I developed serious side effects that affected all my muscles and tendons. She was aware the treatment was stopped after months of difficulty. She informed me no new treatments are being developed or considered. I was told to learn to accept there is nothing we can do, and living life with MAC is going to be extremely challenging and harsh. We will do a CT scan of your lungs every 6 months and follow the progression. Just learn to accept.
Accept is the usual treatment plan I often am prescribed once I developed a life of chronic illness. At the time of this diagnosis in 2016, at age 58, I had already lived in life-changing chronic illness for over 27 years. Acceptance for me was knowing I needed to work at everything on my own to keep my mind and body as healthy as possible. Which was becoming increasingly harder with each new exacerbation, pneumonia, and lung infection! Likewise, quality of life was a moving target and balancing act. I was already trying to come to terms with being forced to reduce Oxycontin(5) after having been prescribed for 15 years. As I ask, what is one more medical challenge? Indeed, I left this appointment frightened, and understanding the average life expectancy living with MAC disease is 5 years.
My husband and I looked at one another as we got in the car, leaving this appointment both saying we will find a way. The ride home was very quiet as I was trying to decide how I was going to tell my 85-year-old Mom (who I was responsible for).
Accepting Pulmonary MAC and a New Life, I Didn’t Want
I was coming to terms once again with a prognosis that impacts more than me. Therefore, I need everyone in my family to accept and understand changes that need to be made if I was going to fight for my new life. A fight that I could not tell them what it looked like, but I was not giving up. I believed more than ever I was important, and my life mattered. Earlier, I had set a goal to live past 58 years old. The age at which my father died with lung disease, lung cancer and brain cancer. Never once thinking about what I would do when I reached 59.
In June 2016, I reached and celebrated 59 years of life. My Sister came to move Mom to Washington to live. My Mom’s caregiver was now my caregiver. I spent every moment that I could manage to study medical marijuana to help me reduce my pain and opioids. I needed to be successful at this, or I would never be able to fight MAC.
After Much Trial and Error
I began to establish a proper medical marijuana treatment for my pain. By understanding strains, terpenes, and learning how to use a herb tabletop vape to consume cannabis that did not harm my lungs. As well as establishing, I needed to reduce opioids at a slower healthier pace to protect my health and life. Critical after being rushed to hospital unable to breathe on my own. Being placed on a ventilator in February of 2016. I was luckily able to convince my doctor that I need to reduce at a slower pace. I still was struggling to understand how a doctor(6) was forcing me to reduce critical medication as I was so terribly ill. Literally I was fighting for my life day by day.
Breathing Changes and What They Mean
By late spring 2017, I began to notice I was forgetting to take my breathing treatments and medicine. Something I never forgot until now. This continued to happen over the next month. I was now just taking the medication out of guilt and to follow the doctor’s orders. By the end of November, I began to realize that maybe I do not need these medications any longer. They once were my lifeline and kept me breathing, but now they did not seem necessary. Leaving me asking is Cannabis giving me a life I never expected.
I began looking for research on COPD and MAC with treatments of cannabis. Finding several articles that cannabis is harmful to the lungs, and a couple that marijuana administered correctly might help the lungs. I should not be doing this well, according to my doctors and the CDC, with no treatment. At this point, I began to think cannabis just might be the reason my lungs no longer required the prescribed breathing medications. I was breathing as well without them as with them. By December 2017, we decided to stop all breathing meds to see how I would respond. This was when it was becoming clear medical marijuana just might be helping my lungs and breathing. This just made me more curious is Cannabis giving me a life I never expected?
Is Cannabis Really a Quality Treatment for Lungs?
CT Scans and lung health 2017 to 2019
January 2017 rolled around, and I realized I had not had one lung exacerbation or hospital stay for my lungs since January 2016. When I was fighting for my life. This was not normal for me. I cannot recall when I last had a year without at least one illness impacting my lungs before I introduced cannabis.
In May 2017, I had my CT scan, and to our surprise, my lungs were stable with no advancement of MAC. My search for education and research intensified while reaching out to Physicians to see what they might know or if they would help me understand. No one really understood or was willing to help me. Which just made me more determined to understand cannabis and the lungs.
January 2018, I still not one lung exacerbation, or hospital stay for my lungs. Plus I am not using any traditional breathing meds now. My doctors are surprised at how well I am doing but say you are just one person, so we can’t know its because of medical marijuana.
May 2018 CT Scan again no advancement of MAC disease and lungs stable. The doctor didn’t understand why or how and can’t explain it, but it’s not cannabis.
You Tell Me
Is Cannabis giving me a life I never expected? How have I lived with COPD for over a decade, riddled with land minds of exacerbation's with many blowing up into serious lung infections? One after another, until I began medical marijuana and now none, zero for 3 years. As 2019 approached, I began reflecting on how I have lived 3 years now without one lung exacerbation, lung infection, or hospitalization. Not what I was told to expect. This is really mind-blowing and life-changing. I am far from a healthy person, but this is sure a life I like and want to continue. Something, I am sure everyone that lives with COPD or MAC wishes they could have. Again I ask is Cannabis giving me a life I never expected.
Encouraging and Rewarding
July 2019 I received a phone call I never expected and never thought I would get, nor did I even think it possible. The doctor wanted me to call to tell you the CT Scan you had preformed in June (2019) shows your lungs are improving. Wait, I think I heard you wrong did you say my lungs are improving. Yes, this is what the doctor told me to tell you. What does that mean, I ask? This means your lungs are improving. I hung the phone up in shock. I just knew there had to be a mistake. Lungs just don’t improve without treatment and in general, not at all.
I cannot find the correct words to express how this made me feel. Indeed, there just are no words strong enough or powerful enough to capture the magnitude of this news. I felt like I was just flipped over the moon. No one has ever told me since I was born with asthma who struggles to breathe that my lungs are improving.
What is the Current Status of My Lungs?
Nodules that have developed by the Pulmonary MAC are starting to shrink and are disappearing. My lungs are sounding clearer than they have since 1998. I no longer wheeze or sound like a cat. It is actually strange to not hear that wheezing sound. It is something I have been doing since I was a little kid; with asthma. Now I can take in a deep breath, and it does not hurt. I no longer cough and gasp for air when I do a pulmonary function test. I do not recall when I could breathe so easy. The doctor says my pulmonary function is still declining due to the COPD, but I cannot tell that at all.
Health and Life Before and After Cannabis
It is really hard for anyone, unless you have lived this life to fully understand the positive impact of medical marijuana on ones health. When I introduced cannabis, I continually struggled to breathe and lived in constant chronic pain. In fact, I needed oxygen and assistance 24 hours a day. I was confined to a wheelchair, giving up more of my independence every day. Consequently, no longer capable of my own personal care, cooking, household duties, or driving. Not to mention, I lost my ability to have a job or take care of my Mom. I was no longer the wife, mother, or daughter, my family once depended on. I was like a full-size baby that was always sick, who fully understood what was going on. Being chronically tested was interrupting life for anyone around me.
Before Cannabis Medicine
My family felt like they could not leave me home alone. Not even for 10 minutes. Nor could I be around people now that my immune system was no longer in working order. Not to mention going to the doctor had become my only outings that now is like playing Russian roulette. So scary, the fear of picking up a germ could be that bullet that ends my life. Germs that most people aren’t even aware they have and are of no harm to them. Is what makes being around others so dangerous for me. Leaving us to know I am always at high risk of picking up a life ending germ, not even realizing it.
Not a life I want but a life I struggled through with all of my medical conditions. Should I just accept? As a matter of fact, 2016 was a extremely hard and horrible scary year. To explain, I was being forced of opioids, diagnosed with MAC, and had a ruptured tendon in my left foot that would not heal. As a result, leaving me to deal with how to reduce my opioids safely, withdrawal symptoms, and pain through the roof. Without any real concern or help from my regular doctors. Then grappling with now confined to a wheelchair, unsure if I would ever walk again. Developing all the symptoms for MAC and experiencing serious side effects from treatments that were more harmful than helpful. Realizing I would not be able to treat the MAC as I was just learning I am immune deficient.
Doctors left me on my own to just accept this new life. With little to no support or advice of how to learn to live this unwanted life. I refused to accept this as my new life I have to live. I began learning everything I could about medical marijuana and how to apply to my health.
After Cannabis medicine
Today I can breathe better than I have in over a decade. I am living a life I never thought possible and definitely never dared to think life could be this good again. The wheelchair is no longer necessary. I can walk on my own and able to breathe at times without oxygen while sitting. Surprisingly no longer do I feel like an elephant is crushing my lungs and the air out of me. Equally important, I have returned to doing some things for myself. I look forward to waking up every day. A transformation I never once thought possible. Cannabis is giving my family and I a better life.
If I had just followed the CDC and my doctors recommended treatment of Acceptance, I would not have this life I enjoy right now. Yes, Cannabis is giving me a life I never expected, and I want to keep it. Finally, how do I share and use what I have learned, experienced with cannabis, and my health to educate others?
Advancing Health and Cannabis
What am to do with all this? How can I show that cannabis is helping my lungs, pain, and overall health? Yes, I am living a life I never thought possible and definitely never dared to think life could be this good again.
Now it is time to ensure others learn so they might have a chance to improve their health and life. It matters what we do when we are ill. To emphasize, it is our life, our health, and we are the ones living it. By all means, invest in yourself by listening and learning how medical marijuana might help you. A fact, nothing has ever been more critical in improving my quality of life.
For this reason, why I started EffectiveCannabis.com. In brief, a place to share, learn, and study cannabis with other medical marijuana patients. Working together determined to understand the effectiveness on our medical conditions. By providing a safe, non-judgmental environment to Share Your Cannabis Story to ensure we know cannabis medicine along with dosing and proper safe administration.
I Need Your Help
I do not believe I am the only person to experience and achieve positive results from cannabis. You have my respect for the work you are accomplishing improving your health and life. Only you and I working together can prove we are more than one person improving medical conditions. Every voice matters and is critical as we work to learn to educate cannabis medicine. Join with me and others at https://effectivecannabis.com.
My Lung Disease Symptoms Before and After Cannabis.
Before Cannabis After Cannabis
Drowning in Productive Mucus Less Productive Mucus
Extended Coughing Occasional cough
Shortness of breath Breathe easier
Inability to sleep Improved sleep (more than 4 hrs per night) Extreme Fatigue Easily Fatigued No Appetite Increased appetite Weight Loss (not a recommended Diet) Weight gain (I will take it to have this Life) Stressed Relaxed Anxiety Calm No energy Enough energy to attend to my personal care Miserable/ broken-down Uplifted/ feel of value Frequent respiratory infections No respiratory infections Night sweats
# of Exacerbation by year # of Hospitalizations by year
2005 4 1 / pneumonia
2007 1 - took 6 months to recover
2009 2 – sending me to ER 1 / Undefined lung infection Extremely ill into 2010 1 / MRSA Pneumonia - ICU
2010 3 – last one pushed into 2011
2011 1 continuous one all year
2012 3 – each lasting 2 months or longer 1 / Human Metapneumovirus Pneumonia
2013 3 - each lasting 2 months or longer 1 / Hemophilus Pneumonia
2014 3 - each lasting 2 months or longer
Introduced Medical Marijuana December 2015
2015 2 - One early fall ran into 2016
2016 2 - fighting for my life 1 / Flu & MAC Lung - Feb. 2016
Medications used to treat my lungs
Before Cannabis / Date Stopped After learning Proper Cannabis Dosing & Administration
Prednisone Prednisone - 4 mg a day
HyperSal 7% HyperSal 7%
Serevent Diskus / 12-2017 Marijuana leaves
Asmanex / 12-2017
Pulmocort / 12-2017
Spiriva Inhaler / 12-2017
Daliresp / 12-2017
Foradil / 12-2017
Rifampin / 9-2016
Ethambutol HCI / 9-2016
Clarithromycin / 9-2016
Nystatin / 12-2017
Benzonatate / 12-2017
Medications Used to Treat Other Significant Medical Conditions
Before Cannabis / Date Stopped After Cannabis
Oxycontin - 240 mg a day Oxycontin - 30 mg a day forced reduction began 12/2015
Oxycodone / 12-2015
carisoprodol / 12-2015
Spironolactone / 12-2015
Omperazole / 3-2019
1. Office of Communications and Public Liaison NIH -National Institutes of Neurological Disorders and Stroke. National Institutes of Health. Bethesda, MD 20892 Date last modified: Tue, 2019-08-13.
2. Genetic and Rare Diseases Information Center NIH -National Center for Advancing Transnational Sciences. PO Box 8126, Gaithersburg, MD 20898-8126.
3. Medline Plus Trusted Health Information for You NIH -U.S. National Information of Medicine. U.S. National Library of Medicine 8600 Rockville Pike, Bethesda, MD 20894. Page last updated on 7 November 2019.
4. Center for Disease Control and Prevention. U.S. Department of Health and Human Services.
5. Living Inside the Storm Being Forced Off Opioids. Effective Cannabis 4 August 2018