Follow up blog, for those of you who want to know more, by Kevin!

Well, I was not expecting this at all -  I have had so much great feedback from everyone - CF and non CF about my last blog on Kev's life with CF that we decided to write a follow up.  Kev has been constantly judged and criticised over the years for his non-conventional methods so this blog is purely for those of you asking for tips and wanting to know more.  Kev agonised over writing this so we hope you enjoy and understand. xxx


By Kevin Bruns.


DISCLAIMER: I am not suggesting that you should rush out and stock up on alternative medicines or stop what you are doing or ignore your doctors. Without doubt you would harm yourself by doing that. I do however hope that my story shows you that there are possibilities beyond what you know or are told. I hope that you are able to open your mind and begin exploring all that is possible for yourself; don't take my word for it.


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"Your child has Cystic Fibrosis", I can't imagine what must have gone through my Parents minds when they where given the news. Although knowing them as I do now and knowing that they were already busy with my older sister who was born deaf, dumb and blind - after being told to put her in a home and forget about her as she would spend her life as a "vegetable" - I'm sure they took it in their stride! I have learned that they had not been told it was a life-threatening disease (or terminal as it was labelled back in 1966) until much later in my life.


I believe that this "lack" of knowledge and the fact that they had my older sister and two further children (my younger brother and sister) by the time I was diagnosed, aged 3, enabled me to have a relatively normal childhood. I wasn't treated any differently to my siblings; playing, getting dirty, germs, colds, all the stuff that children do, I did. In those days, remember we are going back to the late 60's, early 70's, my Parents were told to give me a high-fat diet with lots of fresh vegetables and fruit. They grew most of their own veg and we always had fruit from the trees in the garden and frequently went on pick-your-own outings, not always the legal kind! Only in hindsight and with 20 years research, can I see that they, unknowingly, set the health foundations that are so vital to me today. One thing I am thankful for is the advancement of digestive enzymes as just the thought of the pancrease powder I had to take growing up makes me physically heave.


Growing up I never had any vaccines, they were advised against back then, funny how things change over the years. Funnily enough I have never had a vaccine for anything, somehow that early indoctrination has always stayed with me. Given the contradictory information on them I'm glad it's something I don't even consider doing.


I don't know where my stubborn streak comes from but it was evident very early on. On one occasion it resulted in me completing 99 laps around our neighbourhood green as it took that many laps for everyone else to drop out. In the main it has served me well, sometimes though it can border on lunacy!


When people see me today it is easy for them to assume that I have just always been well and that I have a "mild" form of Cystic Fibrosis. Although I can understand that perception; it bugs me. When I was 9, I began my nebuliser. Not the cute little machines available today, this was the size of a car battery and took over 2 hours. I had to have that twice daily until I was 12. It was stopped when they developed a newer, more powerful oral antibiotic. Thankfully they only prescribed that when I was ill.


My first major health issue was with my stomach. Blocked. Six weeks in hospital. 32 Enemas. Literally one poo away from being operated on. In the words of Forrest Gump - "That's all I've got say about that".


In between diagnoses and early childhood, my Parents had two more children. Gina, the youngest, also had Cystic Fibrosis. Despite the CF she too, like me, had a very healthy childhood. Her challenges didn't appear until she was in her early 20's. Sadly those challenges robbed her of her life when she was just 31.


It was during her first battles and the newer medications she was being prescribed that I first became ill with a severe chest infection, one that didn't respond to the normal protocols. It also seemed that even though Gina and I lived together, sharing the same everything, including the air that we breathed, we never had the same bugs. Later on in life this was to set me on the road to researching the hysteria surrounding cross-infection but that's another story.


I needed to have Intravenous Antibiotics (IVs). Gina had already had these and I was not looking forward to it. They seemed to create a dependency. The more you have, the more you need, the stronger they have to become.  I already had all this whirring around my brain as I sat in the chair at the CF Specialist nurses station, awaiting my salvation.


Now, at this point, I had already begun experimenting with Aloe Vera and its possible benefits of helping during infection. It wasn't until after my first IV that I found the right quality and dosage that worked for me.  


My search for another way, for something outside the mainstream was truly ignited whilst sitting in that chair at the nurses station.



"You may as well get used to this. It's the slippery slope from now on" the nurse said to me as she administered my IV. I was taken aback. No, I was gobsmacked and furious!



"No" I said, "This is my first and last", she just smiled at me. Again, in hindsight, I have her to thank for where I am today. Had she not said what she did I may well have just continued to turn to the prescribed method of treating my CF. What I know call "CF by numbers".


I am pleased to say that I was right. It was my first and (to date) last IV. Why the "to date"? I may be stubborn but I am not stupid. If there comes a time when everything I have tried fails me I will use any other means I can. Probably the same attitude as most people with a life-threatening illness have, mine's just the other way round.


Since the age of 26, I am now 45, I have had to resort to traditional medicine 4 times and one of those occasions was caused by the wrong drug being prescribed in the first place! The others were either lack of funds or supplier issues of products I would normally use, never has it been because something hasn't worked. I do get ill. I do have the same infection challenges, weight issues and fears as any other person with CF. I manage them differently.


The last time I had to resort to seeking medical advice was in December 2010 with a follow-up appointment in January of this year (2011) This was my first hospital visit since 2002.  Long story short - they wanted me in for two weeks on IVs. Their test numbers showed: my Liver was not functioning 100% and needed medication. I had CFRD and would need to start Insulin immediately and I would need a heart and lung transplant within 2 years if I carried on ignoring their advice...


So, let's set the scene for the initial visit. I had come back from California in August after getting married and had caught a bug on the plane. My alternative product supplier had gone into liquidation in the UK and it was prohibitively expensive to import from the USA. I battled on, untreated in any way for 8 weeks. I got worse. I reluctantly called my GP. Can I have some Cipro. No we've got another drug - Augmentin. Now, this is like a smartie compared to Cipro, needless to say it didn't work. So, a further 4 weeks later I am coerced into calling the hospital asking for some Cipro. You have to be an out-patient. OK. You have to have all these tests. OK. You have all these issues (as above).


My thinking at the time was this; I have a raging infection that has been untreated since August. My test results are going to be rubbish and not acceptable. I pointed this out to them. I was told that it was not because of the infection but because "... your luck has just run out". Red rag to a Bull!


I have not been back to the hospital again. I no longer have an infection. I have gained weight. I do not take Insulin. My average daily blood sugars are 5.5. I can huff and puff with the baddest Wolf!


In the past 20 years I have developed a reliable armoury of "alternative" products. Since my hospital visit and the subsequent research on CFRD, Diabetes and weight I have enhanced my armoury with new dietary and exercise programmes that have given me truly amazing results.


So, rather than blabber on about everything I do and everything I have tried, we'd be here years, I hope that you will see from the insight into my life that I am not just lucky or that I have a "mild" form of CF (my sister and I had the same genetic anomaly, the most common one there is) but that I simply chose another path, a path that has been hard work, that has been built by trial and error and that is unique to me. There is no wrong or right, only what works for each individual; hence why I call the current system "CF by numbers"; it ignores the person.


I have found that by asking myself the following two questions whenever I am told something or read something I can usually cut out most of the b*llsh*t that's out there -


1) How do they know what they are telling me?
2) Why do they want me to believe them?


They may serve you well too. Apply them to my story.


I am happy and very willing to discuss "stuff" with you.