A memory popped up on my Facebook page recently that left me speechless. I think that sometimes we are so busy simply placing one foot in front of the other and plodding through our daily tasks that we forget to appreciate how far we have come and the battles we have won.
Two years ago, I was admitted to the hospital due to breathing difficulties. I thought that perhaps I had become so unfit that climbing stairs was too much effort. I had no inkling that it could be something more serious. I still remember the day I went to the doctor.
During a trip to the shopping center to find a gift for my sister, I had to frequently stop and sit down. I felt clammy and faint, and my heart was pounding in my chest. I had to concentrate on drawing in deep breaths and felt as if I had aged about 40 years.
I walked into my doctor’s office and was brought to the nurses. They sat me down, gave me water to drink, and took my blood pressure and pulse. Both were through the roof, and my doctor came to see me immediately.
I had an arterial blood gas done that showed that my oxygen concentration was extremely low. My doctor said she wanted to admit me to the hospital. I wasn’t even allowed to drive home to get a change of clothes. They came to fetch me in a wheelchair, and I was immediately admitted into ICU.
More blood tests, X-rays, and scans followed before a surgeon came to discuss my condition.
It was not good news. The doctors suspected it was lung cancer due to the tests results. My lungs were only functioning at about 30 percent. I was put on supplemental oxygen as well as drips containing various kinds of medication. I had to have an immediate open lung biopsy.
But there was a significant risk that I wouldn’t wake up from the surgery due to my poor lung function. I told my family that I wanted to be an organ donor and asked that no extreme measures be taken. I didn’t want to live the rest of my life in a hospital, unable to care for myself.
When I awoke from the operation, I was in extreme pain. I don’t think I have ever been so sore. But the physiotherapists stressed the importance of sitting up, and they got me out of bed as soon as possible. I would have to be on oxygen for at least another three weeks as my lungs recovered, but we were still waiting for my results to explain what had happened.
Cancer was still being discussed. I was absolutely terrified. The first result came back. It wasn’t tuberculosis. My first win! But they didn’t find an infection. Oh, dear. Now what?
Eventually, we got the results. The surgeons who had performed the lung biopsy said my lungs were in a very bad state. And we finally had a diagnosis: Pneumocystis pneumonia.
This infection is more common in patients who have AIDS. But the powerful immunosuppressants I was on to control my myasthenia gravis had put me at risk of infection. I had tried to remember to wear a mask when out in public but had become lazy about adhering to this precaution. And my carelessness led to my picking up the infection.
I was lucky that it didn’t kill me. Six months of antibiotics and antifungal medication reminded me that I needed to take care of me.
The Facebook memory was the first day I managed to sit up in a chair on my own. I remember holding onto my morphine button tightly and feeling as if I had an elephant sitting on my chest. I had a drain snaking out between my ribs to drain excess fluid, and I couldn’t even make it to the bathroom on my own without collapsing from a lack of oxygen. Walking down the hall with the physiotherapist felt like I was climbing a mountain — a metaphor for my life’s challenges.
I feel like I have reached the top of that huge mountain, and now the small hills are overwhelming me. But when I look back at the challenges I have overcome, my eyes fill with tears. I shouldn’t be here today. But I am. And I will never again take life for granted.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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