CHRONIC ILLNESS

Many people, including a lot of retired people, have to learn to deal with chronic illness. I have severe asthma (SA) which affects my life everyday. Learning to live with asthma is challenging.

Chronic illness comes in many forms. Some we can mitigate with lifestyle changes or appropriate treatment. Eating lots of fruits and vegetables and getting adequate exercise often helps. If you are not very sick you may get some relief from "alternate" medical practitioners. But some illnesses don't get better and we have to learn to manage and live with them.

I learned a lot about asthma from my GP but he can't be an expert on every disease so I had to find other information sources. I found some reliable websites, such as the Mayo Clinic, that provide brief but accurate information on many diseases. However, the best source of information that I found for asthma was the Asthma Society of Canada website.

Image from Asthma Society of Canada

MYTHS ABOUT ASTHMA

There are a lot of myths about asthma and scientists knowledge about asthma is growing fast:

  • MYTH: Asthma is a children's disease. FACT: Many asthma sufferers are adults - including people in their 90s.
  • MYTH: You can grow out of asthma. FACT: You may have a long remittance and asthma symptoms come and go - but once you have asthma you always have it.
  • MYTH: All asthma is allergic. FACT: About 70% of people with asthma have allergic asthma.
  • MYTH: People with asthma are allergic to pollens, mites and dog danders. FACT: It's not always possible to identify what you are allergic to using standard allergy tests. The allergen could be specks of rubber tires in the air.

  • MYTH: Asthma is caused by emotions. FACT: Asthma is not caused by emotions but does cause negative emotions in people who have it. It's scarey not be able to breath.
  • MYTH: Neutri-pharmaceuticals like feverfew will cure asthma. FACT: They do not work for severe asthma.
  • MYTH: Asthmatics feel out of breath because they can't get enough oxygen. FACT: Asthmatics feel out of breath because they can't breath out the carbon dioxide in their lungs.
  • MYTH: Taking asthma medications is a waste of time. FACT: Many people use maintenace puffers on a daily basis and rescue puffers if they have an exacerbation. When you have the right combination of medications you should never have to go to hospital.
  • MYTH: There are no support groups for asthma. FACT: The Asthma Society of Canada can help people of every age.
  • MYTH: No-one dies of asthma. FACT: Asthma can kill you by blocking your airways. Fortunately most people with asthma do not die from it.

    MY ASTHMA STORY

    I am telling my asthma story in case it helps anyone suffering from asthma to understand the physical, social and political issues related to being an asthmatic. Everyone's asthma story is different. This is mine.

    Our son suffered from asthma as a preschooler. There were no puffers in those days and every time he caught a cold he had to go to our small local hospital for a few days. I would take my air mattress and sleep on the floor. He once had such a severe bronchial spasm that he had to be helicoptered to the Vancouver General Hospital for treatment. When he was a kid, children died from asthma. As a result of these deaths, more research was done and new medications created. One of our grandchildren also has asthma. He once had to spend Christmas in hospital. However, regular use of maintenance puffers seems to keep him symptom free these days.

    I was diagnosed with adult-onset asthma in 1991 when I was in my late forties. I had never had asthma before. I caught a cold, coughed for a year, and eventually a pulmonary function test indicated I had asthma. I started using a rescue puffer (Ventolin) when I needed it and all went well for years.

    In 2003 I caught another cold and my asthma flared up. I was so short of breath I couldn't walk a block and I coughed constantly. Rescue puffers were no longer sufficient so my respirologist prescribed Symbicort (a combined rescue and maintenace puffer.)

    I was in Australia when a doctor friend finally insisted that I take a weeklong Prednisone burst. I felt better almost immediately but it didn't last.

    Back in Nanaimo I never missed a day of work from asthma but colleagues said I looked like the walking dead. I took Singulaire and Thyopheline along with Symbicort and Ventolin, plus Nasonex for my sinuses. By 2005 I was feeling much better and only needed Symbicort and Nasonex. But when I went on a trip I always took Prednisone - just in case.

    In the winter of 2012, it started again. Another bad cold, more endless coughing, spitting and feeling out of breath. Constant wheezing. This time my eustachian tubes stopped functioning and I was often almost deaf. My respirologist told me I also had bronchiectasis - permanent lung damage. But, he reassured me, I wouldn't die from it.

    By summer of 2013 I needed another 10 day Prednisone burst. I had been boating and found I could not walk up the very level ramp at high tide. I was scared of Prednisone - would I really get necrosis of the hip as my GP said I might? My kind pharmacist said not worry. I think my GP was having a bad day and my pharmacist was lieing.



  • Image from Asthma Society of Canada

    My new respirologist needed to confirm that I actually had asthma - not COPD - so she could decide what to do. For her to make a proper diagnosis, I needed another pulmonary function test. But it was impossible to even get on the wait list for an appointment at my local hospital. I was so sick that even trying to eat dinner sometimes seemed impossibly hard. I lost a lot of weight.

    While surfing the internet, I discovered that the Asthma Society of Canada has a website with a lot of information about asthma. It encourages asthma patients to advocate for themselves. A board member even encouraged me with personal emails. I wrote letters to my MLA and the regional health department and suddenly I got an appointment for the test.

    The Asthma Society also recommends that anyone with asthma should have an Asthma Action Plan - what to do when your asthma changes. It's usually based on charting your "peak flow" by using a peak flow monitor. When you blow into the monitor, it measures the force of the flow. Your green zone is when your peak flow is near your best level (carbon dioxide is flowing out). Yellow is when you are lower and red is when you are at half of your top level. My Plan included taking prednisone when I hit red for one full day. Over the next year I actually had to take prednisone bursts a total of 5 times. I would quickly get better but then decline again. It was a roller coaster ride!

    Because I was also having hearing problems from related eustachian tube dysfunction, my ENT guy put tubes in my ears (like they do with kids). Because my sinuses had blockages which might be affecting my asthma, I got a referral to an "uber sinus specialist" at St Paul's in Vancouver. Since I could not get publicly funded surgery for 3-5 years, I paid $8,000 to have sinus surgery done privately. After the surgery, I took pulmicort for my sinuses and a variety of antibiotics for my ears, sinuses and lungs. My pharmacist became my best friend.

    When I still wasn't better, my respirologist referred me to an "uber asthma specialist" also at St. Paul's. He does research at UBC and has a technician who measures lung function before every appointment. He upped my Symbicort to 4 puffs 4 times per day - that's one Symbicort puffer per week (at $100 each) - way more than maximum advised by Symbicort. He tried Azithromycin as an anti-inflammatory but it didn't work for me.

    When I first saw my "uber asthma guy," my lung function was over 90% - probably because of the sinus surgery and prednisone. However, over the next few months (while we were travelling across Canada) it dropped down to 60%. During the trip one ear tube fell into my outer ear where it felt like a bug. The Emergency Department in St. John's Newfoundland couldn't see it and sent me on my way. When we got back to Vancouver, my "uber ear specialist" (also at St. Paul's) removed both tubes. They hadn't really worked.

    In December 2014, my "uber asthma guy" prescribed a new drug- Xolair - which I get by injection every 4 weeks at a clinic in Nanaimo. Xolair reduces the IgEs and prevents inflammation in people with moderate and severe allergic asthma. It doesn't work fast like prednisone but it doesn't have the bad side effects. If you are a responder you can take it indefinitely. Since some people have an anphylactic reaction to Xolair and it costs $700.00 per injection - you need to try everything else before you try it. Fortunately my health insurance covers most of my drug costs.

    Despite the Xolair, I had a bad set-back in the spring of 2015 - deafness and half an hour of coughing and spitting a few times a day. My peakflow fell and my lung capacity dropped by 55%. Another big prednison burst at the end of May worked its usual magic but it hasn't lasted. As of September, my lung capacity is down and my new diagnosis is that I am reacting to yeast (candida)in my lungs. The Xolair is slowing my decline but not stopping it. As of October 2015 I am taking 8 weeks of an anti-yeast drug, plus 16 puffs of symbicort, 2 inhalations of spiriva and pulmicort nebules for my sinuses every day, plus my monthly Xolair. I feel fine - but my peak flows are not as good as they were in the summer. What next? I don't know. At the suggestion of a friend at the National Asthma Patient Alliance I have started a blog about my asthma. For the next chapters in my story check out Penny's Asthma Diaries

    SELF-ADVOCATE

    Knowing I should self-advocate was very helpful. I took it seriously and highly recommend anyone with a chronic illness to keep insisting on getting the care they need. You are not being silly or selfish. Even with family support, you have to self-advocate!

    I think it is particularly hard to self-advocate when you are a retired senior:

  • Maybe you just don't want to admit you are sick. One way of dealing with illness is to simply deny it.
  • Maybe you don't want to be part of the demographic who are wasting taxpayers money on health care for old people - so you just tough it out.
  • Maybe you think you are just getting old and have to live with it. It's kind of the purgatory that comes after you go to heavenly retirement.
  • Maybe you feel so sick, you can't muster the energy to self-advocate.
  • Maybe you just can't figure out how to wend your way through our complicated medical system or you have got hung up somewhere in the bureaucracy.

    Whatever the reason, there are people in our society who can help you. If you have asthma or know someone who does, go to the Asthma Society of Canada website. It is aimed at patients (not doctors) and includes many resources. In 2014 I joined the board of the National Asthma Patients Alliance and hope I can help other people dealing with asthma.

    Back to Learning.