When Australian Doug Porter was born, the average life expectancy for people with CF was 13 years old. 47 years later, Doug Porter is still going strong. In this interview, Doug shares with us how he defied the odds by living so much longer than expected, and how he managed to have a successful career as a pharmacist alongside maintaining his health.
Martin) Studying at university and working as a pharmacist are both very time consuming activities. Do you have any practical tips for fitting in your healthcare needs (physio, nebs, IVs, etc) whilst also making a success of study/work?
Doug) I was very lucky to have been taught from an early age to become responsible for my own health. From as long as I can remember as a child I was always receiving effective postural drainage physiotherapy from my parents twice a day every day. Granted that now has been replaced by more modern techniques of airway clearance but it is still important to be vigilant with your therapies. It is certainly from those early days that my parents instilled in me the need to be organised.
The best advice I could offer anyone is to keep a routine with whatever treatments you do or are prescribed to do. This might mean missing out on some things but in the long run you will experience more of life and certainly stay out of hospital longer. There are no short cuts for those of us with CF that will allow you to live a long productive life and experience university and then, following that, workplace success, marriage and family life.
At University I received free physio sessions from the students at the University as they were looking for patients to practice on. I’m not sure if that would still be the case today. I was at University a long time ago (1987-1989) but back then it was a huge help for keeping me stable. They also taught me how to do my own postural drainage for the weekends.
I left home at age 17 and basically have been responsible for my own health since I was about 15-16. I began seeing the doctor myself (without my parents at age 14-15) although they would still be present at the appointment. Let’s not forget that in the late 1970s/early 80s there was no Google searches for information, so the only time parents or patients received information was at the appointment. To encourage me (a teenager) to see the doctor alone took a great trust in me by my parents. I’m not sure how many parents would follow this course today but I think it is one of the reasons I am still here.
This decision to allow me control must have been difficult for my parents but they believed that if I was to live a long life that I would have to be the main driving force behind staying well. Remember, back then life expectancy statistics were certainly nowhere near the age of 37. When I was born it was around 13 years of age.
I think at University I always thought I was a bit different to the others but to me that meant that I wouldn’t be able to participate in every activity on campus. Even though I was a little different I had a stubborn determination to prove that I was “normal”. I still did most things and played a lot of sport like football (soccer) squash, tennis, golf, touch football and swimming. I represented the college on their golf, soccer and squash teams. I played representative soccer (Sunshine Coast) throughout my school years.
I even regularly did quite a lot of running. In fact, to this day I am still the only student that ran the school cross-country over 5km and the 100m final at the same speed. I may have come last in the 100m by quite some way but did manage 4th place in the cross country from around 160 students. I used to just keep chugging along!
However things like nebs, Tablets, physio and exercise always had to be a priority. You just have to be disciplined. I had and still have a steadfast belief that statistics didn’t apply to me and that I would prove everyone wrong and last way beyond the average life expectancy.
The same structures needed to be in place when I started work. You really need to make health a priority but also remember to have some fun in your life. For me that was travel, sport and catching up with friends. We recently had our 27 year reunion Golf event for a group of friends that I made at St Johns College. Every year we play a game of golf with the winner receiving the coveted “Brown Jacket”. These guys are “my brothers” (called PUCS) and we have all become lifelong friends who catch up as a group yearly with the stories of the past getting bigger as we age. They are one of the main reasons for me staying well along with my beautiful wife and daughters.
I have travelled to many countries from Estonia, Russia, Poland, Thailand, Alaska, Canada and Switzerland to name a few. The important thing with travelling is preparation and be CF sensible while you are away.
Nobody, especially me, wants to live for CF treatment 24/7. You need to have other interests, otherwise, what is the point?
As far as tips go I think we all know what we need to do and we all might have slightly different regimes but basically if you want to keep going you need to stop cutting corners in treatments. Also, for me I tried to minimise antibiotic use as much as I safely could. That way, hopefully, when I really did need them they could still be effective. I tended to rely on physio and exercise to clear infections rather than drugs.
Young Doug
M) Working as a pharmacist on the frontline of a hospital exposed you to a lot of germs from sick patients. Did you have any ways to minimize exposure to these bugs?
D) I actually mainly worked in Community Pharmacy which is definitely at the frontline of viruses and bugs, however for the most part of my life I didn’t shield myself from the public. In the early 1990’s and into 2000’s bacterial hand gels and masks weren’t commonplace like nowadays. Sometimes I wonder by being exposed did that actually help me build up a reasonable immune system to many bugs? I’m not suggesting that everyone with CF hang around pharmacies and hospitals, but for me the only thing I was careful about was mixing with lots of other CF patients. We have all suspected for many years the dangers of cross infection but only recently has research shown just how serious it can be.
Growing up I never had the day off school or work if someone had a cold. I hear many stories these days of parents of CF Children keeping their kids at home if someone has a cold in the class at school. That was never considered an option for us. In fact I reckon I only had about 5 days sick leave throughout my 25 years of work outside of a planned admission, which I usually did on my annual Holidays.
Nowadays, my lungs are at 28% and I certainly am aware of other people’s viruses and generally stay away because I only have a small margin for error, but even when I was at 40% I didn’t really worry too much about it. I guess parents and patients will have to decide about this for themselves when they face it.
I am not suggesting everyone approach their CF care the way I have done but the point of this article is for people to see what has worked for me so I am just listing what I did to this point in time.
Coincidentally I have been below 40% since 1998 so whatever I was doing must have been working ok for me at least. I don’t have a port, or a peg, or do night feeds and still have my original lungs.
Maybe I am just lucky or maybe I just don’t ever let CF win.
M) You recently (2014) retired from your career as a pharmacist on the advice of your doctors (& wife) due to this exposure to germs affecting your health. It must have been a really tough decision to make for you. How did you cope with that and move on in life?
D) For someone that has always tried to live like they didn’t have CF it was a tough decision to actually say “I’m tired and this is actually wearing me out”
That being said now that I have stopped work I have realised just how worn out I was. I can actually stay awake until 10pm now which is a lot later than the 8pm in the past. I was not the sort of person that would ever just sit at home and wait for a transplant, so after an initial period of rest for a month post retirement I have really found a niche for myself using my medical background, combined with the lifetime experience of being a patient, in finding part time work as a consumer representative on several hospital and high level Government Committees. I find this work really rewarding and not as demanding physically as work.
My health is always the priority so if I’m unwell I don’t attend the meetings (Skype is used) and it usually only involves around 10-15 hours per month plus a lot of reading. The best part is that any involvement as a consumer representative can be done in my time. This is very different to paid work in a pharmacy where you are required to be there from 8am -5pm on your rostered days and to serve customers even if you are trying not to cough. Sometimes it’s not a good look for the pharmacist to be sicker than the customer if they are out the back coughing up a lung!
Also my continuing to work was causing distress to my family as my wife and children felt like they were watching me get sicker and sicker and couldn’t do anything to help. As a father of two the last thing I want to do is worry my wife and daughters. So I relented and decided to retire. Even though financially we took a small hit we are still fine. Perhaps in the future more financial advice could be given to families and patients with CF about preparing for your future financially. This is an area we are currently exploring as my wife and I also run our own accounting practice.
M) You’ve far exceeded the lifespan that a CF sufferer was expected to reach when you were born. What do you attribute this to?
D) MENTAL ATTITUDE
As I said before I have always thought statistics like average life expectancy didn’t apply to me. I’m not sure why they wouldn’t but I was steadfast in my belief that I would live until I’m 80. I still think this even now when the Doctors are practically measuring me up for possible transplantation. My own family will attest to the fact that I am incredibly strong mentally perhaps too much so.
DIET
I have always been on the light side with my weight but resisted the urge by my team, about ten years ago, to do night feeds. I was vigilant with my supplements but I believe I have my mother’s genes – she has always been a “greyhound” so there is a fair chance that was going to be my build too. I resisted the idea of night feeding as I had read research that showed that a large proportion of those who did night feeding developed CFRD ( CF Related Diabetes). I did not drink Glucolyte until I was around 30 yrs of age as I did not know it was recommended for CF patients. I also only took 2 salt tablets daily until age 30 but now I take 9 daily. The changes at age 30 were significant in my treatment as that was when I first started at The Prince Charles Adult CF Clinic under the management of a full Multidisciplinary Health Team, not just one doctor. My lung function now, some 16 years later, is still the same numerically as when I first visited TPCH in 2001.
EXERCISE
I have already touched on this subject but I was very active my whole life playing many sports and basically never sitting still. Whilst I have definitely slowed down the level of activity is still relevant in that I push myself to just below my limits most days. I still walk approximately 600m for my six minute walk test which is ok I reckon.
I would definitely recommend swimming as an activity for CF patients and even use a heated pool particularly in the winter months if available.
LIFESTYLE
I have an amazing large group of people I call friends. People that have helped me over the years. When I was young I did party a little too much in terms of drinking but I always knew when to stop ( barring a few times when I misjudged it). I did make allowances for any parties by really making sure I had done all my treatments rigorously in the days leading up to it. It is nearly impossible to avoid drinking when you live on campus at University and maybe if I knew what I now do I would have slowed down a bit more but we did have fun so I don’t really want to change anything. I think I may have been lucky because my liver and kidneys were always pretty good at that time. Maybe others might not be so lucky.
The other big barrier for a lot of CF patients is that many patients resign themselves to a life alone. Whilst it may not be easy to find that special someone I was always of the belief that CF would not be the reason that would prevent me from finding happiness. I actually met my wife online in 2010 but as it turned out we actually met 20 years earlier when I first started work in a country Pharmacy. My wife Katrina was actually a sales rep for a sunglass and sunscreen company. Whilst we may not have gotten together back then it can certainly be said that my Chemist shop was always well stocked in sunscreen and sunglasses! The point is that when we actually did meet online I was 40 years old and sleeping with oxygen on. Many people would think “who would want to go out with someone with CF and is obviously sick” and many would perhaps not even try. I knew deep down that I would find someone and that I had a lot to offer so I just went for it and embraced the whole online dating experience. After one misfire when CF was an issue I dusted myself off and tried again and met Katrina. For both of us this is our second marriage and we have never been happier. I have two daughters and life, whilst presenting some extra challenges with a family, is very fulfilling and rewarding.
So sometimes we just have to give it a go and take a chance. Don’t let CF dictate whether you can find someone or not.
Doug receiving a special contribution award from QLD Governer General for personal efforts and dedication to the estabilishment of the Adult CF Unit at TPCH
M) You’re in the pre assessment phase of a possible lung transplant. You’ve mentioned to me that your plan is to prolong a transplant for as long as safely possible – how are you going about doing this?
D) Basically I am being sensible. I work on doing interval training in the gym with attention on quad strength as this is considered a good marker or measure of transplant recovery. I try and avoid colds and viruses which I know I didn’t always do earlier in life. I do however still use the same basic principles I have always done. Try and minimise antibiotics and try and exercise and nebulise, etc., as prescribed. I don’t wait for the need to present at emergency for an admission and have never really done this in my life apart from one time when I somehow contracted Parvo virus from my puppy. I am quite proactive when my lung function starts dropping and will then try and book an admission through the clinic.
I carefully manage my energy levels and try not to overwork myself with Committee work.
Sounds easy doesn’t it!
Doug with his wife, Katrina
M) Despite your doctors in the 1970s discouraging children with CF from exercising (as they thought CF kids were too fragile) your parents had the foresight to ignore that and made sure you exercised to strengthen your lungs. What advice would you give to parents of kids with CF now with regards to the importance of exercise for youngsters?
D) As I have said earlier I think the main reason I am still here is that somehow my parents took the approach to encourage me to exercise. It was either going to work or spectacularly backfire. Lucky it was the former. I would definitely encourage any CF parent to actively encourage their child to do some form of exercise that the child is happy to do. If there is a problem getting them motivated then, obviously, that may be a tricky one. I have two teenagers that are not big on sport so getting them active, even without CF, has been challenging at different points. That being said, at the moment they are both pretty good with it.
One thing I do remember as a child (around 14yrs) is that I was not keen on the supplements. Mum and Dad had me read an article that showed that at that time those CF patients that were vastly underweight (of which I was one) did not survive. I then started drinking supplements. Scare tactics worked on me but maybe they won’t work on every child. I would suggest that I was a sensible child when presented with this type of information and did not get depressed or lose hope. Probably because I didn’t think I was going to die before I was at least 80.
M) The strict, regimented lifestyle that those of us with CF should ideally adhere to (physio, nebs, eating right, not drinking too much, fitting in exercise, etc.) can severely impact on enjoying life. These days you adhere very strictly to your health care but that wasn’t always the case. In your younger days you used to enjoy a drink and partied as hard as anyone else at college. How important do you think it is for people with CF to ‘let go’ once in a while? With the benefit of hindsight, would you do the same again?
D) I may have already mentioned this that I probably wouldn’t have changed much but I certainly should have toned it back a bit. A lot of males at that age think they are bulletproof. CFers are no different but the reality is we don’t have the reserves that normal people do.
Whilst is it important to “let go” don’t be crazy about it. Maybe I was a few times and I won’t say a couple of things that come to mind that I did because they were a bit reckless, but I would like to think that my health was in good shape back at University so I probably got away with it. I cannot remember in the 3 years at University ever being admitted for a “tune up”. If I was it was only once.
M) Do you have any other words of advice for other people suffering from CF, or their loved ones, that we haven’t covered?
D) I think most of what I think in terms of advice has already been said but as a final thought all I can offer is;
Stick it out and be patient with your loved ones and family because there will be times that are tough and they live those tough times as much as we do as patients.
You will make some wrong decisions about what you think your body can handle. Learn from those mistakes and remember what worked well.
Be vigilant about things like antibiotic overuse, diet and exercise.
Don’t think that you need to do drugs and smoke to experience life. I have seen so many CF patients smoke, etc., in all my years but sadly I don’t see them anymore. Be sensible about your fun.
One last thing that I probably should emphasise is that during my life I tried to minimise a few things. These were –
Antibiotic use – this may prolong bug resistance and also extend the life of your kidneys and/or liver. This was not always the easy road to take but with hard work on the physio and exercise front I managed to stay out of hospital for longer periods. Even now at 28% on a good day I am still lucky not to be admitted any more than every 3-5 months.
Protect your veins as much as you can. I still tried to use different arms for canula’s and PICC lines etc growing up and still don’t have a port or peg for feeding.
And finally, drink lots of fluid.
A huge thank you to Doug for taking the time so share his experience of life with CF with us.
*ALWAYS ENSURE YOU SPEAK WITH YOUR MEDICAL TEAM BEFORE MAKING ANY HEALTH RELATED CHANGES TO YOUR LIFESTYLE*
CyFi Life - Advice on Leading Healthy and Fulfilling Lives from People with CF 