January 28, 2015

Ken’s Story

My name is Gina and I have been married to Ken for 35 years.  We live in the north eastern suburbs of Melbourne with two cats, chickens and finches (we have no children).  I have never voluntarily smoked, but I’d been a passive smoker for 25 years living with Ken, and 15 years working in a small office with my boss who was a heavy smoker as well.   About 1990, I  had a chest infection that would not go away.   The doctor sent me to the Epworth hospital lung function clinic where I had a number of tests.  The doctor there asked me how long I’d been smoking and I said I don’t.  Not willingly anyway.   When I told him about my husband and my boss, he said ‘If you don’t divorce your husband and quit your job, the pair of them will kill you’.   Ken kept smoking, but my boss bought an ioniser machine for the office and banned the staff from smoking in there.  Eventually we bought an ioniser for home as well, and it helped keep the air a bit cleaner.  I will say in Ken’s favour that when I requested it, he never smoked in the kitchen or in our bedroom.

Ken started smoking when he was about 15.  His father smoked, so I guess Ken figured if it was good enough for Dad, he could do it too.  He started off smoking a couple a day, but by the time he reached 50, he was smoking a full packet a day and this continued until 2001 when he was about 59, when a full packet by then was 50 cigarettes.  Four years before,  he caught a chest infection which didn’t clear up after a month,  so our GP sent him for X rays which showed Ken had the beginnings of emphysema.   Our doctor told Ken if he didn’t quit smoking he would be a basket case in five years.  Ken just shrugged and lit up another cigarette.

In late August 2001 Ken caught a cold that got worse very quickly.  On September 7th I drove him to our clinic and saw a doctor, who took one look and said ‘You’ve got pneumonia, we’ve got to get you to hospital.’  He called several hospitals but the answers were the same – ‘no beds, no beds’.   Finally he found a small private hospital not far away who said they could take Ken.  I drove him there and they admitted him, but within an hour he was barely able to breathe, and the nurses admitted they couldn’t do anything, and would have to call an ambulance to take him to a public hospital.   The paramedics arrived and loaded Ken on board while I sat in the front with the driver.  Half way to the Northern Hospital the medic tapped the driver’s shoulder and said ‘Let’s get rocking and rolling’.  The sirens came on and the lights were flashing and we were suddenly speeding through the night traffic.  I looked behind me but all I could see was the medic bending over Ken.  When we got to the hospital he was rushed into the emergency ward past a waiting room full of people. There must have been about 12 people working on him – Xrays, blood samples, breathing apparatus…one of them turned to me and said “Did your husband  know he has emphysema?” and I said yes but he wouldn’t stop smoking.  The doctor said “Well, there’s nothing left of his lungs and I don’t like his chances.  One lung has collapsed and he has gone into cardiac arrest”.

I was hysterical by this stage.  I called my sister-in-law  on my mobile and screamed “You have to come to the Northern Hospital in Epping – Ken’s got pneumonia and is dying”.  She and her daughter arrived within half an hour, by which time Ken had been taken up to ICU and I was given a cup of tea in a private room to wait.  We sat there for what seemed like hours, until a doctor came in and asked to speak to me on my own.  I said “This is his only sister and her daughter, who is a nurse.  I want them to stay with me”.  He explained that Ken was on life support, but they didn’t expect him to live more than 24 hours.   We were stunned – from a bad cold to near death within a week.

We went home, but went back every day after that to sit with Ken in the ICU ward.   I’ll never forget how kind the nurses were to us.  On September 11, the world was in shock over the events in the USA and I felt like my world had crashed to an end when the doctor told me they were removing the tube from Ken’s mouth and performing a tracheotomy.  I said “He’s going to die, isn’t he” and the doctor said “Don’t say that, he might hear you!”  He went on to explain that Ken wasn’t completely unconscious – just heavily sedated with morphine, and they never know how much a patient is aware of when they are in that state.  At the end of a week, they unhooked him from the life support and as he gradually regained consciousness, the doctors were cautiously optimistic for his chances of survival.  But they said if he ever smoked again he would be back in hospital and would not come out again, as the damage to his lungs was so severe.    The withdrawal symptoms were difficult, but Ken never smoked again.  He wouldn’t use nicotine patches or other drugs to help him, but he did have two acupuncture treatments to stop the craving, and after that he had few problems.

Ken was off work for six months (he was a bus driver), and went back for only a few days a week until he built up his strength.   In the first year after that event, he had a stent put into an artery, and was sent to a lung specialist, but only went there once.  The man was so rude and obviously disgusted with anyone who had done so much damage to themselves by smoking, that Ken was so intimidated he refused to see him again.  He was on dozens of medications and inhalers for a year or so, but they were gradually reduced in number as his health improved.  I was warned by a number of medics that Ken would probably only live for about a year, but as time went by and he continued to live a relatively normal life, the time frame was extended to five years before he may have to go on oxygen therapy, I was told.

Ken hated taking all those drugs and insisted on knowing what each one was for.  He consulted a naturopath and said he wanted to get off the pharmaceutical drugs and use natural remedies.  To her credit, she told Ken he would never be able to stop taking the drugs as they were keeping him alive, but she prescribed herbal medications to build up the heart’s strength.  About a year later, the cardiologist said “I don’t know what you’re doing, but keep doing it.  You’ve gone past your use by date and you’re actually improving!”   But a few years later, he told us that Ken’s heart was now so bad that the left ventricle wasn’t functioning , and he would have to have a defibrillator implanted to keep the heart beating well enough to survive.

This was done in due course, but Ken insisted that he didn’t feel any better in spite of what the surgeons had told him – to expect a miracle after the ICD implant.   The cardiologist monitored Ken every six months, and diagnosed the cause of Ken’s continued weakness – a blockage in the artery, so bypass surgery was performed.   Again he was told he would feel like a new man, but breathing was still a major problem.   About that time we saw the heart surgeon who did the bypass surgery and I asked him if he noticed Ken’s lungs while they had his chest open.  He said flatly “His lungs were black”.

I always attended Ken’s medical appointments with him, and it was driving me mad that nobody mentioned his lungs.   When I asked the cardiologist if Ken should see a lung specialist he replied that he only worked with hearts, not with lungs.   So we asked our doctor if he knew of any lung specialists, and he referred Ken to a respiratory specialist, who is one of the best doctors on Ken’s team of medics – he has a great sense of humour and he is sympathetic to Ken’s condition.  Ken had been using a long-acting muscarinic antagonist since 2001 and the specialist tried Ken on several other medications, but none of them did much good until he got on to a inhaled corticosteroid/long-acting beta2-agonist  combination medicine.  They help to a degree, but when the specialist mentioned a procedure called lung reduction, where the diseased part of the lung is removed and the breathing can improve by 20%, Ken jumped at this.  He badgered the specialist for a year, until the doctor finally told Ken the truth.  Lung reduction will not work in Ken’s case because the damage to his lungs is so severe the surgery would not be possible.  Oxygen therapy would be of no use either.  The only thing that would help Ken is a complete lung transplant, but because he has chronic heart failure, and there are so many issues with the heart, he probably wouldn’t survive the transplant operation.    All he can do now is exercise when he feels up to it, eat the right foods, keep physically active, but pace himself so that he doesn’t overdo things and get overtired.

I’m proud of Ken.  He is outwardly philosophical about his health, but now and again when he is having a bad day he will curse the day he smoked his first cigarette.   I give him an anniversary card every September to mark the number of years since he quit smoking.  He turned 71 last year after retiring from work.  He gets up and dressed every day and goes about his day as he would normally, unless he tires himself out by walking too fast, walking up a hill or up steps (fortunately our house is all on one level), or carrying something heavy.  He can no longer mow the lawn or even do any simple gardening like weeding because the act of bending over puts pressure on his lungs and reduces his breathing capacity.  He can still drive safely and we often go somewhere for a drive in the country and lunch out somewhere.

I call him my Bionic Man, and joke with our friends that he’ll never die, because if the heart stops, the ICD will restart it with an electric shock, so I’m stuck with him forever!  (I wish.)  I occasionally wake up in the middle of the night and get scared if I can’t feel or hear him breathing.  Many a time I’ve put my hand on his back or chest to feel for a heartbeat and the poor man wakes up with a fright and yells at me!  I don’t know what would happen to Ken if I died first.  I’m not technically his carer, as he looks after himself personally, and has no problems eating or moving around.  But I can’t see him cooking meals, and certainly wouldn’t be able to do the washing and housework on his own.  His COPD hasn’t restricted us a great deal, as we are both getting older and slowing down anyway.   But he hates the thought of ending up bed ridden and gasping for breath, and I don’t know how I would cope with that if it happens.  We don’t talk about it and don’t even think about it really.   We just take each day as it comes.