April 3, 2014

Trish Miller

I KNEW SOMETHING WAS WRONG

How many COPD sufferers have said “I knew something was wrong?” Diagnosed with COPD, Alpha 1 – Anti-Trypsin Deficiency and GORD changed Trish’s life. But from being absolutely shattered in 2002 and being unable to do even basic chores, through a series of remarkable medical interventions, she has been able to turn her whole life around and again has her life on an even keel.

For a number of years “I knew something was wrong” with a daily awakening of coughing spells, bringing up phlegm, and then facing ever increasingly difficult days of trying to do things without running out of breath. I refused to see a doctor about this because I simply did not want to know.

It was the after effects of the 11 September 2001 Twin Towers terrorist attacks that made me realise that life was too short, and I determined to get my ‘problem’ looked at by my local GP. Initial examinations led him to refer me to a thoracic specialist in January 2002. I was diagnosed with COPD.  Emphysema and chronic bronchitis were the ‘nasties’, but I had chronic asthma thrown in as well.

Since that initial diagnosis, I have since found out I have an Alpha 1 – Anti Trypsin deficiency which means I inherited my emphysema. I was also diagnosed as having G.O.R.D., Oesophagitis, and Fibromyalgia across the back and ribs. All of these conditions of course compound the pressures on and in the chest and lungs.

Unfortunately my conditions were not fully explained to me at the time or if they were, I didn’t listen and I certainly did not put it all together. I thought I could recover in a few months’ time. How wrong I was. Over the next few years, I very quickly learnt about my conditions and undertook pulmonary rehabilitation, followed strict medical and dietary regimes, and maintained quite a vigourous daily exercise program. These actions certainly improved my quality of life and although I knew my combined conditions would always get worse, things started to look good for once.

However, in 2007, my health started to deteriorate rapidly. My specialist referred me to a resident thoracic surgeon at the Prince Charles Hospital in Brisbane who he described as “a genius who just might have something in store that would be worth considering.” As it turned out, this doctor was about to trial a new technique for Lung Volume Reduction that did not involve cutting away the dead parts of the lung. It had never been tried anywhere in the world before and I was about to become the world’s first recipient of a Bronchoscopic Thermal Vapour Ablation for Emphysemaic Lung Volume Reduction (BTVA for short)

A short explanation of this procedure is warranted here to paint a picture of its significance for COPD patients in general. A BTVA procedure can only be carried out on patients whose emphysema is predominantly concentrated in the upper lobes of the lung. In my case, the top 10% of both my lungs were dead as a result of concentrated emphysema.

The procedure requires the surgeon to feed a tube down through the mouth into the dead portion of the lung, and then inject super hot steam into it. In my case, steam was injected for six and a half seconds. The steam shrivels the dead portion of the lung allowing the rest of the lung to move in and occupy that space. Same outcome as traditional Lung Volume Reduction surgery but without the long recuperative period and without the accompanying high mortality rate.

The procedure was to be carried out in December of 2007. However, in the final battery of pre-op tests conducted, a sizeable black spot was discovered in an X-ray of my right lung. It was feared I had a cancerous growth in that lung, so the procedure was cancelled and the surgeon instead carried out a Bronchoscopy to determine the extent of the growth. He never found cancer. What he found was a garden variety pea had become lodged in my right lung and it was this that caused the black spot to appear in the X-ray and panic in the hearts of everyone. To this day, that is still the subject of much laughter for all, me included.

With that cleared up, I then had the BTVA procedure done in January 2008 on my right lung. I was kept in hospital overnight for observations only because no one knew what might happen to me (remember, this was classified as experimental surgery), and sent home the next day in bright and healthy spirits.

Although the next 12 months required monthly check ups to monitor the BTVA effects, clearly my breathing capacity, my general wellness, and my outlook on life improved enormously as a result of having that procedure performed. That remains true to this day. In fact, subsequent events have convinced me that without the benefits of that procedure, I would not be alive today to tell this tale.

So what subsequently happened? By mid 2009, I had developed debilitating pains in both my legs which were getting so bad that I was having extreme difficulty in performing any physical activity. Certainly I was unable to walk 30 metres without tearful pains that forced me to stop. And it was not just the fact I couldn’t walk, but the knowledge that unless I maintained my pulmonary exercise programs, I would die. I was diagnosed with having an extremely high build-up of plaque in the arteries between the pelvis and the knee in both legs and this was stopping the blood flow to my lower legs. So in September and November 2009, the plaque was surgically removed from one leg and a by-pass graft performed on the other. A couple of weeks later I was back into my daily exercise regime once again.

Then, just as I thought I was on top of the world again, the G.O.R.D. and the Oesophagitis decided they were now going to play up. This became so severe that I was again unable to breathe properly and the chest pains became so severe that I eventually had to have Fundoplication and Laparoscopic surgery in June 2010 to relieve the condition. Whilst that has not completely removed all of the symptoms, I am nevertheless once again back to relatively good health.

From being absolutely shattered in 2002 and being unable to do even basic chores, through a series of remarkable medical interventions, adherence to strict medical and dietary regimes, dedication to exercise programs, and with tremendous support networks around me, I have been able to turn my whole life around.

Today, at age 63, I am now back working in a shop at least one day a week, I play competition League 10 pin bowls twice a week (6 games all up), I exercise every day in our home gym, I walk several laps of the length of major shopping centres at least twice a week, I assist daily with the maintenance of our family home and five acre block, and am now building up a small business making predominately baby’s clothing, novelty items and other associated products.

That’s far and away much better than I ever believed or imagined was possible back in 2002.