April 3, 2014

Darryl Summerhayes

LUNGS OF STEEL ARE NOW LUNGS OF MUSH

Too often thought of as a condition that only affects the elderly, Darryl found out that a diagnosis of chronic asthma, COPD and Vocal Chord Dysfunction was to dramatically change his lifestyle. Now 55 years old he has successfully adapted to the necessary changes to his lifestyle.My name is Darryl Summerhayes and I am a 55 year old male living in the Lake Macquarie area of NSW. I am married with three children, two grandchildren, two dogs and a bird. I have been unable to work for the past few years due to a severe back injury sustained in a head-on motor vehicle accident in 1987.

I was self-employed in the building/renovation industry when my family urged my wife and I to make a sea change, owing to my business increasing dramatically which was putting a lot of stress and additional strain on my body by having to work both on the job and in the office 7 days a week, just to keep on top of things.

So off we went moving from a new home at the base of the Blue Mountains in NSW to an old weather board home with water frontage and bush surroundings that required a considerable amount of renovation (but we didn’t mind as the home had a lot of character and potential). Once we settled in I tried to get a bit of work in the same field, but I found it very difficult to gain the confidence of the locals in an old country town. Then I was fortunate to gain the confidence of a few locals, and in no time I was pulling some good work.

Once again history was starting to repeat itself with the business beginning to get out of control again and my body and health starting to decline with more and more ailments. I was off to my favourite GP to hear some more good news. I was diagnosed with, High Blood Pressure, High Cholesterol, Hypothyroidism and Osteo-arthritis of the spine, (but far be it, to hear me complain) so it was down tools again.

Then after the 2006 storms in Newcastle, I was offered a position with a Queensland. building company to the insurance industry as a Project Manager, the work was good with the only tools required was a tape measure and note pad. Then early 2007 there was a massive hail stone storm in the Blacktown area, so off they sent me for five months, coming home every weekend. Coming close to the end of my tour a cyclone hit Mackay in northern Queensland, so packing the ute off I went on a 2000 km journey where I was until early October 2007. At this stage, I decided enough was enough, my health was deteriorating even further, and I returned home into retirement.

Well for the next 18 months or so I was able to complete the bulk of the renovations to my home with the help of a young but keen school leaver, even though I suffered severely by the day’s end I was able to have it done by Christmas that same year with the help of pain killers and scotch (not always together).

It was then time to slow down and regain my health and mental state, so I just pottered around doing a lot of menial tasks just to fill in the days, like cooking and housework as my wife is still working full time. It seems that the start of my major problems was when I finally decided to quit smoking (after about 40 years). On Father’s Day 2009 my wife, 13 year- old son and myself were celebrating the day with our other two sons. I had been feeling unwell over the previous few days, but this day was worse, it was hard to stay awake and when I was, my thirst was incredible.

With my wife being a type 2 diabetic for quite a few years, she decided to test my blood glucose level, the reading was that high that it didn’t register on her monitor. After a few more tests she rang the hospital who advised that I come in straight away.

Their readings were also off the scale of normality, so after a couple of insulin injections I was released being diagnosed as having type 2 diabetes. This is not the end of the earth, all it involved was diet change, exercise and a small amount of medication.

I was just getting into the rhythm of my new life with a new diet and exercise regime and was feeling quite well when I was hit again. I had just finished mowing the lawns with the push mower (ride on had broken down) and was feeling unwell with chest pains and shortness of breath, so I had a shower, tested my blood glucose and ate some lunch and rested for the rest of that day.

The following day I was still complaining (not that men complain) about my chest pains and shortness of breath, so my wife rang my GP for a consultation, which I was given that morning, within 5 minutes of my consultation he had me on the bed hooked up to heart monitors then proceeded to call for an ambulance to rush me to hospital with a suspected heart attack.

After spending eight days in a hospital bed, being pushed, prodded, pierced, probed, jabbed and jeered I was released from hospital having had all the tests known to mankind for the heart, but to the medical profession there was no problem with my heart, even though nearly every night I would have these intense pains over the heart area requiring anginen tablets and morphine to release the pain, but still no inkling as to what was really going on.

I was released on the Tuesday afternoon at around 4:00 pm with the typical letter to my GP stating my stay in hospital, what they found (or couldn’t) and to take 2 aspirin and call me in the morning scenario. By Wednesday evening I could hardly breath, I tried to lie down, but that only made it worse, so I ended up spending the night sitting upright in the lounge chair watching television (if you can call it that in the wee hours of the morning). Thinking about it afterward I know I should have called an ambulance but stupid me didn’t want to disturb my wife’s sleep as she needs to be at work on Thursday’s at 6:00 am for Payroll.

She contacted my GP when he opened on the Thursday and he basically saw me that morning when my wife could arrange a substitute to cover her at work. My GP gave me a referral to a respiratory specialist; she then returned me home and made me as comfortable as possible, then returned to work as there was nothing she could do for me at home.

My wife contacted the respiratory specialist, and surprisingly, made an appointment for that same afternoon. On arrival at the surgery the confusion started with them having no knowledge of her making any such appointment.

Well!!! You could imagine her distress having to watch me sitting in a chair gasping for every breath I could take, as well as try to get through to the receptionist that she had made the appointment for this day, and her saying that they do not have any such record, so it was agreed that what had happened  was in all the confusion and the way the referral was typed my wife inadvertently misread the form and made the appointment with the GP and not the respiratory specialist, an easy mistake through teary eyes.

So to cut a long and boring story short, the specialist shuffled his schedule and saw me straight away, firstly diagnosing a severe lung infection. After having more and more tests it was established that my condition was a combination of chronic asthma, COPD and VCD (vocal cord dysfunction) at this stage (but this I feel is about to change).

Up until then both myself and my family had never heard of this disease, so naturally they all went to the internet to find out more. Do you realise how much information you can retrieve from just entering one basic word? Anyway they were all a bit dumbfounded as to how it came about all of a sudden, but have all read and understood the symptoms and can provide basic assistance for me when and where required.

I was forwarded on to the Cardio-Pulmonary Rehabilitation Unit run and operated by Hunter New England NSW Health, which is headed by Jenny Darcy, Respiratory Rehabilitation Nurse, whom without a doubt, is the most caring and passionate member of the medical profession that I have ever come into contact with. Jenny also has some of the most dedicated and professional staff under her banner who are an absolute joy to attend there lectures and exercise classes, where even the majority of the staff also suffer from or deal directly with there own form of respiratory and other problems.

As a result of the support and dedication I decided to start my own self-help support group called LIPS (Lungs In Poor Shape) to try and keep the motivation and interest for self-help as well as a social gathering of fellow air suckers like myself, which is slowly turning out to be a successful little group.

It is now just under 12 months since I was diagnosed with COPD and at this moment it does not seem to have got any better. If anything I feel that it is a little worse, but I am slowly learning to pace myself a little better. It all takes a while to understand that what your mind says you could do your body now says ‘bugger off’. I’ll do it my way and in my own time!

My life has been once again thrown into turmoil and confusion with the onslaught of COPD, VCD, and asthma, as to say that family events are now planned around my accessibility and comfort; which is nothing to be sneezed at, but at times it is extremely disheartening, embarrassing and mostly upsetting, to be unable to participate in many activities, but as long as you can still get a cuddle at the end of the day, it makes it all worth while.

These diseases have caused some very severe restrictions to my former life style, like going for a long walk, now I can only manage quite short distances and need to use a walker to aid my breathing and I am afraid to venture out alone in case I experience problems.

This, plus a multitude of other issues like general maintenance around the home, driving, (something I once used to really enjoy, but now it feels like it’s a chore), camping, golf, heaven help – even sex, etc. Even down to the really bad days when it is painful to shower and dress, which is where my loving wife comes in to action once again and provides me the assistance that I require.

Some things that I was always aware of but took for granted was disability access; as an example, my wife and I decided to see a show and stay in Sydney for a couple of days for our wedding anniversary back in October. The drive down was fine, naturally, until you hit the city, we found the hotel and parked the car. Keeping up so far. Now we start, there was no disability parking available, we had to walk up steep ramps to the lift, (no lift to lower levels) once at street level we had to contend with the lift being share with a courier company. So off we went dodging parcels, drivers and vehicles only to exit to the street behind the hotel (sorry, forgot to mention no access direct to hotel lobby).

When we finally made it to the front door of the hotel (lugging suitcase, overnight bag and anything else my wife could pack) and me in tow puffing and panting and sounding more like Darth Vader from ‘Star Wars’ ever minute, only to find, you guessed it no ramp and no bloody help. OK so we made it up the 6 or so stairs to where we were told if we had come through the bottle shop next door to the parking station, the share a goods elevator with the public bar that shares the hotel foyer. Buy the way this is the NSW Rugby Leagues Club.

Still with me!! Off to the room we went, naturally with no help. The room was nice, small, but very clean, but a bit stuffy which wasn’t a major problem as we had rested and I had regained my composure and breath. So we decided to go for a walk leaving the air conditioner on so we could have a lie down after our walk.

Well guess what!  The air conditioner didn’t work properly and unfortunately the way the laws are now, you can’t even open the window on high rise. Anyway we were given another room with little help from the staff (but anyway we now know where to never stay again). The walk to and from the theatre was uneventful, although very tiring and the show was well worth all of the earlier issues. As a mention though I needed to go to the bathroom once the show had started so as I stood I had one of the ushers on my arm helping me to the door, the two ushers on my return. Just shows you the difference of people that have a position, and those who take pride and compassion in their position.

I know this would sound very morbid to most, but I am in the midst of writing instruction sheets on the maintenance and use of things like the swimming pool, spa, lawn mowers, change tap washers, maintenance of vehicles insurance details and so on, because I believe that my life has inevitably been shortened by the contraction of these diseases, whether they be from years of smoking or working in old and dirty buildings with the dust and asbestos (and yes you guessed it ‘no mask’) floating freely through the air.

You can remember what we were like back then with ‘Lungs of Steel’ now it is ‘Lungs of Mush’. Anyway what I am trying to convey to you is that these problems have seriously reduced my quality and undoubtedly my quantity of life. So suck it up and get on with it, and don’t forget there’s always someone that is worse off than us!