Really, we could start this story when she was a wee lass, growing up in a very small community in Scotland where her family home was heated by burning coal, but let’s fast forward a few years. She lives in Canada now. My brother and I are grown and have families of our own.
We always knew that our Mom had problems with her lungs like Asthma and mild COPD (Chronic Obstructive Pulmonary Disease), and we knew lung problems ran in her family, but things really began to escalate when in January 2012 she got her first bout of pneumonia.
Because of the already weakened state of her lungs, her diagnosis of mild COPD became chronic. That winter was the worst; her first bout landed her in ICU for 10 days and on life support for 3. Over the next few years she would visit the hospital twice more and contract a severe case of pneumonia 7 more times.
During that time she had such a severe anaphylactic reaction to a medication that her lungs stopped functioning. It was really by chance and a case of the right place at the right time that saved her life that day.
Each case of pneumonia was slow torture; as my Mom describes it, “I felt like someone had put a plastic bag over my face with one tiny hole to breathe through for weeks at a time.” She was put on strong antibiotics which would clear the infection up for a while, but then she would gradually get sick again.
It took some time, but eventually it was discovered through a barium test that each time she swallowed, a minute amount of the food or liquid was going down into her lungs causing these infections. There was great concern that she might choke to death on food and the only way to deal with it was to put in a feeding tube. She was told that this would be for life and that she would never be able to eat or drink anything again.
The prospect of this was daunting and took all of her courage to face. About 1 week later the feeding tube was planted just above her belly button. The incision became severely infected and required a trip to the ER where they manually removed the infection which she says was excruciatingly painful but necessary.
While on the feeding tube she began to question one of the medications she was taking for her COPD. Although her doctors didn’t believe her she became convinced after reviewing her own medical records that one of her puffers was causing her cough. All of her doctors disagreed with her and felt the benefit of the medication was more important and did not believe it was the cause but that her cough was a symptom of the COPD.
Since being on the feeding tube her cough had receded and so she conducted her own experiment. She took herself off the medication she suspected and within 2 or 3 days she was able to drink a whole glass of water without stopping, successfully.
She then called and made an appointment with her respirologist who arranged for a second barium swallow test. It was performed on the exact machine and by the same technician who was amazed to find that her swallow was now entirely normal. Her Doctors agreed she was having an allergic reaction to her medication and immediately took her off of it. She had correctly identified the problem and her feeding tube, rather painfully was removed.
By this time though, and as a result of these several aspiration pneumonias, my mom had already developed a secondary lung disease called bronchiectasis. She has been on supplemental oxygen for about 2 years now and her usage has gone up quite dramatically.
She now can’t be without oxygen for more than 5 minutes. If she contracts any sort of lung infection, head cold, common cold or flu, her doctors tell her it’s very likely that she will die. She is permanently on antibiotics to avoid this. She is now starting down the long road of preparing for a complete double lung transplant.
The hard work for her has already begun to prepare her body, to help keep it as fit and healthy as possible, for the incredible task ahead. The risk of rejection in this sort of procedure is high so the work done before and after in incredibly important. There’s a 20% chance she won’t survive, but we are putting our hope in that 80%. She takes pulmonary exercise classes twice weekly and works out in the pool 3 times a week, taking her oxygen as far as it will go with her, and does what she’s able to.
For the last year she’s undergone much testing, has been deemed fit in all other respects and was invited to go to Toronto University Hospital for final assessment before being placed on the wait list for transplant. The process requires that the patient have a support person with them at all times and they that they live in Toronto close to the hospital for at least 3 months and possibly up to 2 years post-surgery. My parent’s home is about 300 km from Toronto, so they are obligated to move and sell their house.
The cost of living in Toronto has reached an alarming high, it’s now almost impossible to rent a 1 bedroom apartment for under $2,200 CAD a month and to be close to the hospital that could be up to $3,500 or more. For one week in Toronto for testing, living and staying as frugally as possible, they spent $1,500 just for accommodations, gas and food.
My Dad works 2 jobs and is attempting to start his own business. I won’t go into their financial troubles, but they’ve had their share, and are now faced with selling their house, moving expenses, medications and other medical costs, hotel and travel expenses, wear and tear on their vehicle, finding healthy and happy homes for their many pets, and must either have my Dad stop work to support her or pay for a support worker. With a conservative estimate of $3,000 a month, for a year to live in Toronto that’s $36,000 in rent alone. The money that we raise here will go to their living and medical expenses through this process.
This is the most personal thing that I, or my family, have ever shared and my Mom was very reluctant to participate. Watching her go through this however, and the quiet strength of my Dad as he supports her in so many more ways than just financial, breaks my heart.
If I could pay to support them through this, I just would. Sometimes though, you need to ask for help. And if money isn’t what you have to give, a ‘like’ or a ‘share’ can go a long way. From all of our family, her husband, children and grandchildren, thank you for staying till the end of our story and for helping us give to it a happy ending.
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