My Story
Follow me as I tell my story of how I got where I am, what brought me here, the people who were my support and how I am managing today.
My story is being told in three parts and I image that will be lots of revision along the way.
It would be great to be encouraged by you….so please let me know what you think.
I look forward to your comments and welcome you to contact me.
I worked as a college business instructor, and ran a small business. Ii was rare to have a day when there wasn’t a deadline to meet and I was busy, my life was busy but it was never stressful.
I’m Just Tired
It had been a long day and I had a right to be tired. I had been really tired for the last 6 months. On days that I was working part time I was coming home at noon and popping right into bed for an afternoon nap. That was very out of character for me. In passing I was concerned but not enough to get checked out.
The Aging Process
I could blame my age. I was, after all, turning 60. Age was catching up with me because I rarely had afternoon naps in the past. I had never been a good sleeper so I was aware that an afternoon nap usually meant no sleep at night. Lately, however, afternoon naps had not been affecting my night sleep. I could sleep until 5:00pm and go right back at 11:00pm.
Diagnosed
I was a pack a day smoker for a long time. So, it came as no surprise in October of 2015, when I was diagnosed with COPD. I was waiting to see a specialist. I learned that being a preemie, and having a history of blood clots, phenomena and pleurisy made me a bigger risk for developing COPD.
January 6, 2016
That night at about 10:00 pm, I was having a glass of wine before bed. I sent a text to my son to come up from downstairs. I don’t remember anything after that text. He knew it was a serious attack, he called my daughter. I told her that I felt like my heart was coming out of my throat. I was sweating and struggling and gasping for air. My feet and legs were burning from what I would later find out was lack of oxygen. My daughter tried talking to me, I told her I thought I was dying. That was when she called the ambulance.
VSA
By the time the ambulance arrived, I was vital signs absent. The paramedics revived me twice on my kitchen floor, got me stabilized and ready for transport. Transporting me was tough because of all the snow and ice around the house so they had to carry me out in a bag.
About half way to the hospital I lost vital signs again and having to pull over the ambulance to get my heart started a third time. My kids were in the car following the ambulance, they called my husband from work to meet us in the emergency room.
Emergency room doctors worked from 10:30 pm until 6:00 am getting my heart and lungs stabilized. My carbon dioxide levels were 3 times higher than normal, leading doctors to believe I was a retainer. I was placed on life support and put into an induced coma to rest my heart and lungs and I was moved to ICU.
In January of 2016, I would spend 5 days in a coma, 18 days in ICU and 23 days total in hospital.
July 10, 2017
My Story Part 2 Respiratory Rehabilitation
I am attending Respiratory Rehabilitation for Chronic Obstructive Pulmonary Disease. This is the beginning of another chapter that takes me back to the hospital for another 12 weeks.
My timeline of doctor appointments for February 2016
Feb 4, Pulmonary Doctor
Feb 11, Family Doctor
Feb 19, Pulmonary Doctor
Feb 19, Family Doctor
Feb 22 Respiratory Rehabilitation Clinic Inpatient
Thankfully, I live in a health care city. It used to be THE STEEL CITY but that slowly changed over 30 years and now Hamilton is a major health care hub for Southern Ontario. We have 4 major Centres of Excellence that includes
- Heart and Head trauma,
- Lung and Kidney,
- Cancer,
- Children.
We have many step-down clinics and supports for everything including gender and age based care. If your loved ones are in an accident and they are taken to Hamilton, just know they are in rough shape also in the hands of the best Doctors and nurses…..bar none.
When I had my first attack, I was transported to the hospital with the first available bed. That’s the way it is in Canada. Everyone gets treated, priorities first, but you don’t get too much to say about where you get treated. The task is to stabilise the patient and bring in the proper specialist to follow to manage it.
All of these hospitals under the Center of Excellence share resources, intellectual property and human capital. What they are not always able to share is equipment.
When specialise equipment is needed, the patient is transferred to other locations because plain and simple it is cheaper to move the patient then to duplicate resources.
In essence, I was in the wrong hospital and they could do little more than stabilise me and get me hooked up with a specialist. They did an amazing job.
I was lucky enough to obtain a referral and an appointment with one of the best doctors at The Firestone Institute for Respiratory Health.
I didn’t know it then, but that doctor would save my life and thankfully he would become my Pulmonary Specialist. I will be eternally grateful to him and his staff for their superb care. He had me on an action plan to be admitted back to hospital and attend Rehab but before I could attend I had to be stabilised. He felt I was in lung failure and in danger of a re-occurrence. I had just spent a week in a coma followed by a month of no exertion. Pryor to that, for a good four years I had done little or no exercising, was virtually hiding my symptoms and was living a sedentary life. I was constantly short of breath and doing as little exertion as possible it was the exact opposite of what I needed to stay alive.
They tried a few methods of steroid injections and eliminating and adding or changing drugs to speed up the process. One of the drugs that were causing me problems was the Beta Blockers. They made me feel like I was carrying an extra 30 lbs. I agreed to go off of the beta blocker since heart tests had been negative for any issues or disease. I had an entire team of 10 people working with me to achieve that one goal of getting strong enough for rehab.
Among the chaos in walked this tiny lady who would yield much power over my rehab. She would be my Respiratory Therapist once I was admitted and as we made eye contact she must have felt my confusion and fear about the process. She came right up to me and whispered in my ear, “It’s OK Barbara, I know it is intimidating now with all these people working on you but we are going to get you walking again. Just you wait and see.” Interesting I thought, to walk again would be a novelty. I couldn’t walk across the kitchen to get a glass of water most nights and she was making these lofty promises of walking again. I had not walked for so long that I had forgotten that feeling of freedom to just walk and think and be in the moment. I thought “Oh, you may have gotten others doing it but not me, for I am far too sick….”
I resisted Rehab at every turn pleading my advance stages of COPD and being far too sick for repair. I didn’t want to go at all especially after just getting out of hospital but with the urging and insistence of my daughter and therefore the rest of my family, I was admitted to the inpatient program and stayed as a guest in the hospital for 4 weeks coming home every weekend. Then I was discharged and spent another 8 weeks as an out-patient and attended Rehab every afternoon.
It turned out that Respiratory Rehab was the best thing that ever happened to me and I strongly urge anyone given this gift and who has the opportunity and is brave enough to attend.
Rehab opened my eyes to the joys and benefits of exertion, exercise and education. I saw many people at various stages of this nasty disease with various lung disorders and diseases. I began to realise the severity of this illness and buckled up to educate myself to save my life.
It is not just about the exercise; Rehab has a few other important components including education by experts including a Pharmacist, Nutritionist, Physio, Occupation and Respiratory Therapist, Psychologist and graduates of the program.
We learned about the whole body, about breathing, meditation, strengthening, mental health, socialization, diet as well as community and government supports.
They started me off slowly with simple stretches and built up my endurance. I was thrilled to be able to use the peddler
for my arms and upper body and Nu Step for my legs.
I was using 5 lb weights for upper body stretches
and 10 lb weights on my ankles for leg stretches. I was very soon strong enough to stop using oxygen.
I used a walker and walked around my block on weekends when I was home. I got the mail and met the neighbours and felt like a new person. I worked harder than I could ever have imagined. After my time at Rehab I would return to work and begin my new life.
July 14, 2017
June 4, 2016 (Back Then)
The lessons started in Cognitive Behavioural Therapy while I was in Resp Rehab but I didn’t fully grasp the concept of it. My daughter, who is my savior, encouraged me and reminded me to be mindful of my actions and my environment as a means of returning to life.
She had been teaching me Mindfulness to manage stress, encouraging me to journal, to meditate, to stay in the moment and enjoy the moment as it is without trying to change it.
When I walk around the block every day, I am not reading or listening to music but being Mindful. I am mindful of the flowers and the trees, mindful of the cracks in the sidewalk, of the sights, sounds and the smells. I was drinking it all in and enjoying my new-found mindful freedom. I walked and walked like Forest Gump had run. I was feeling encouraged and grateful. I was grateful for life, for the family that is supporting me to get better and to return to them. Mindfulness helped me to return to the same life although now with a few restrictions.
That morning I had walked my usual mile around the block and talked to a few neighbours, who hadn’t seen me since my cardiac event. I sat in my walker and watched my husband gardening. Then I came in to lie down for a few minutes to get ready for the evening. I was very excited to be back to the land of the living as I was resuming activities I used to take for granted. Since I had vowed to start leaving the house socially, this weekend would be Cocktails and Canvas with the girls.
I was just about ready to go and I began to feel a pulse in my neck. It continued and I started feeling palpitations in my chest and I called my daughter. She asked me if I felt like I needed an ambulance and I said no, let’s wait, I so did not want it to be that again. My heart rate was increasing and I didn’t know how to control it, so I agreed to have her call and get the paramedics to check it out. And a good thing I did because by the time the paramedics got here I was, once again, vital signs absent.
Bam, I was right back in ICU. I woke to intubation. It was not nice. I felt like it was Groundhog Day. It happened again at the same place, in my kitchen. I had been saved a second time, as I would find out later; by the same paramedic team. I really do thank God for them every day; however, this time when I woke I was a little less grateful. I’m not totally ungrateful but really….. Is this going to keep happening every 6 months?
As I became conscious, and before I lost my mind, I started to use the lessons from Mindfulness and it got me through that first night. I wasn’t thinking about the future or about what happened but of my walks and the sights and sound and smell that I love. I can feel every crack and bump in the sidewalk as if I was right there. Thank God for Mindfulness and for the calming voice of my daughter that I heard playing over and over again in my head. It saved my sanity that night.
I wasn’t put into a coma this time and was conscious in about 8 hours. But it was a long night and I had a tube in so I couldn’t communicate. The nurse came to see and said my family had just left. Damn, my daughter would make them take the tube out, but she just left. Relax, go for a walk in your mind and tomorrow will come soon enough. Thank God that nurse gave me a sedative to help my drift off until daylight.
When I woke my family was there, and the tube was removed. I was transferred that day to the step down ward and then to a real ward. Doctors had not clued into what to do with me. For now I was on Telemetry and they could monitor my heart.
One doctor who was a cardio specialist came in to visit me and told me this attack was my fault for not using oxygen. I told him I was not prescribed oxygen but I had been on and off of it earlier in the year. He said he was not prepared to do anything for me. My daughter was there and that’s when the fight began. From the days of my first admission I had kept in touch with one of the ICU nurses and so I contacted her and asked for her advice on how to proceed.
It wasn’t easy because I wasn’t in a fighting mood but fight I did to see another Cardio doctor. I had the staff doctor talk to the paramedics and they, thankfully told them what had happened before they could get a strip to prove it. My daughter fought with me and I finally was granted an audience with a top specialist. He said that he would set me up an MRI of my heart and then he and his team would go over the results to see if they could do anything to help me find a solution. It sounded encouraging but I was so claustrophobic that I had a hard time thinking of being in the MRI. Mindfulness came into play once again.
After a 3 week wait and still a guest at that hospital I finally got my answer. The Cardio team would be willing to implant
an Implantable Cardio Defibrillator (ICD) with a pacer.
The ICD would offset any further SCA’s and allow me to continue fighting the good fight with COPD. Doctors did not know how or if the two were connected but they did know that I had stage 3 COPD and was treating me for that.
Once the decision was made the surgery was scheduled pretty quickly and I was transferred to another hospital to have the surgery. I was expected to be discharged that same day.
However,being very drug sensitive Beta Blockers had a double effect on me so ended up with no heartbeat and I spent another two days in hospital.
I would end up spending the total of one month in hospital I was OK and on the path to healing and I was very happy to be coming home once more.