CF-MUDDA: An Integrative Story of Cystic Fibrosis
CF MUDDA – My Story
By – Faye Upston
So my life began much like anybody else on Aug 5th 1980. I am the youngest of 4 siblings. My parent had me vaccinated at 6 months old for measles, mumps & rubella. Everything changed from that point on. I became ill, very ill. Hospitalised for 3 months, they diagnosed me with Cystic Fibrosis. Doctors said I would not make it through the night, then Sr Carmel blessed me with Holy water from Lourdes. I was Baptised, Confirmed & given the last rights all at once by Fr Doherty. Enter the first miracle of my life!! Over night I was sitting up & smiling for the first time since becoming sick. the doctors told my parent to go place bet’s at the races because they had never seen anything like this before!
From this time on was the usual routine of colds & flu, medications & hospital admissions most children with CF have to endure. I was not a mild case. Until the age of three, when my mother finally thought to herself, ‘there has to be a better way??’. Then her journey of research started. She learnt the impact of diet and how much of a difference it can make. She looked at the hospital CF diet which consisted of high sugar, bad fats, bad salt, processed foods, lollies, lots of dairy all in the name of calories. Which was meant to equate to weight gain. However she noticed the more patients at these foods, the more enzymes they needed, the more sick they became. She decided to take another course and put me on a modified macrobiotic diet. When I say modified I was allowed a limited amount of chicken, rye bread, yogurt, carrot and apple juice, these are not things that are usually allowed in macrobiotic protocol, but given I have CF (and not Japanese!), it needed to be adjusted.
Guess what? It worked!! From the age of 3 to 15 I was hospital free!! I lived a very normal life & had a happy childhood. I didn’t even hear the words ‘Cystic Fibrosis’ until I was a teen! For this childhood I am forever grateful (I just thought my mum was full on about diet! haha!).
Integrative medicines played a major role in keeping me out of hospital, normal weight, on minimal enzymes, normal appetite and cough free. I think I must have consulted with every integrative doctor in Adelaide, but some of the things that really made a difference growing up are as follows (I hope I haven’t missed anything!): Vitamin C – oral & IV’s Garlic – Oil caps, Kyolic Garlic liquid & cooked in every main meal! Zinc – immune booster & responsible for many digestive enzymes Vitamin A – In very high doses to thin mucus & help mucus membranes Vitamin E – Protects lungs from oxidative damage Vit D – helps calcium absorption & assists with maintaining good lung function Selenium – maintain elasticity of the lungs Cod liver oil – essential fatty acids (I have since replaced with flax oil which helps the respiratory enzymes function) Probiotics – maintained healthy digestion & strong immunity B Vitamins – for energy & appetite Herbs Juices!!!!
*Note all the supplements I took and Take are all natural, never synthetic
Another important factor that kept me well was keeping active. I never did formal physio (percussion, pep, nebulizers etc. until the age of 15). I had no chronic cough because I was always active and on a diet that was made to reduce and move mucus, this is how I kept my lungs clear. I was always outside, like Forrest Gump… ‘I was running’! Ocean swimming tennis netball soft ball walking my dog table tennis gardening trampolining golf sailing bike riding running badminton trail riding (horse riding) bush walking I was not allowed to watch TV much at all, so this was a good way to get me thinking outside the box! (pardon the pun!)
Unfortunately when I was 16 things took an abrupt turn for the worse. A combination of a family crisis/stress and I caught a killer virus (it was an really bad flu season that year) it hit me HARD. I ended up with pneumonia, in intensive care. I flat lined, I remember feeling my body floating above me and I was thinking, praying ‘no no no no no, please God I don’t want to die now’, suddenly a surge of energy came back into me and the heart monitor started beeping again… second miracle! As a result of this bought I was told that I should be listed for a double lung, heart and liver transplant.
Say what?! NO!!!! It was all they could offer me at that point, so in my mind I had one of two choices, ‘roll the dice’ so to speak and go to an integrative hospital in Mexico or have these transplants?… hmmmm. Nothing could be scarier at that age tan to make this choice. But I said to my parents I would rather die trying than go through the transplants.
Hospitals sacred me. I looked around at what they had to offer, the life they offered. I saw the ultimate end. It was not for me, I didn’t want to live that way (particularly since I had experienced a life without hospitals, I wasn’t prepared to give that up so easily) I am a long term thinker!! I also was not prepared to give up on the dream of having my own family some day, this and the love of my parents, were the motivation behind all the effort I put in over the next five years.
In this five year period I went to Mexico four times, Brazil twice and through Europe once, on physical and spiritual journeys to heal my body and Soul. To the do the Gerson therapy hospital I went four times. This therapy single handedly saved my life at the time, and my organs! But it was tough, certainly not for everyone. I did it full time, sacrificed my life to it. Much like an athlete, I dedicated all my time into getting better. During this period I also kick a four year, drug resistant infection I caught in hospital; MRSA and Aspergillus at Dr Bradford’s hospital in mexico.
In 2004 I was married to the man of my dreams, we have had four sons together; Charles 8, Marcel 6, Gabriel 4 and Sebastian 2. All natural conceptions, full term, natural births (Sebastian was even breech! and yes, I caved and had an epidural with him which was THE best birth choice I ever made! haha! The other births were full on! No pain relief at all.. Never again!). Our boys are all happy and healthy, no CF.
For me, I have no regrets, only gratitude and hope, for the life I have and still lead using integrative and nutritional therapies as the foundation to my well being. It’s freed me mentally, emotionally and physically from the fears that CF can cause. Of course I have bad days, CF is a challenge. I still need medications now too, Kalydeco has brought a relief like nothing else, but fundamentally, you cannot stay well long term if you only rely on drugs and bad diets. Somethings gotta give! It’s all about balance and hopefully it is more heavy on the natural side than the artificial side.. because after all, we are natural beings CF or not! I wish you the very best of health to you! Never give up!! xo
Faye, a 32 year old mother blogs regular columns on her site http://cfmudda.blogspot.ie/ where she shares her journey and experience using integrative medicine, it is a massive resource full of life and insite from a highly experienced Cystic Fibrosis patient, we at the TLT4CF are very grateful to Faye for sharing her journey with us and allowing publication. Please note always consult your doctor or healthcare professional before making any changes to your medical regime, for information purposes only see disclaimer