Wednesday, 28 November 2012

Kalydeco Effect: Emotional Aftermath of Cystic Fibrosis

Where do I go from my last blog, right?!*haha. Something a little more down to earth or shall I say 'of' this earth!... 

The surprising emotional effect of Kalydeco: I write this in the hope that it may resonate to others, for someone else who may at times feels the same. Also for the powers that be, a glimpse into the underlying emotional reality that we have to deal with. Kalydeco is a new dawn not just physically, but it will protect young Cystic Fibrosis patients from the phycological effect and impact that this disease has over time. 

After reading accounts by others on Kalydeco, it seems that for some there is an element of emotional effect that comes hand in hand with this foreign feeling of deliverance. The physical feeling of relief is very positive indeed, no doubt the most positive physical feeling in my life (well, to do with 'CF' shall I say!). My own personal fulfilment's and hopes of a happy family life have come true. There should be no reason to feel anything but elation, yes?

Then why does my heart feel so bad at times? I cannot explain it. It is disconcerting. My life really is reminiscent of being let out of prison, but there are moments the memories of the past traumas come back to haunt me. I may be free of the relentless practical rigours of CF, but the memories seem to become stronger? Incidental happenings trigger it off, a smell, a sound, a person. No ones fault, it is what it is. My challenge is how does One move through, feel better... how can I forget it? I would like to have no memory of it all to be honest (My first memories are from about 8mths old. You can imagine then, I remember a lot!). I do conceal it in my conscious mind. Its the uncontrollable, instinctive, flashes of the past flood my mind momentarily that I would like to prevent. An alcohol swab is enough to set me off!

It feels like grief. Grieving about the life lead dealing CF? Not to be confused with self pity, more just in retrospect the enormous weight of it all becomes more palpable once you stop having to desperately maintain it. Crashes down like a tone of bricks. Time heals nothing, it what you do in that time that matters, however what can I do about it? It happened. This disease altered and effected my life. I have to cope with that. I accept I've got CF. I am proactive in fighting it. I am naturally a sanguine person, humour, optimism and positivity come easy for me. Where dose this darkness come from? The sheer gravity of living with this disease over time imprint on your character I suppose, as much as we try to 'sweep it under the rug' so to speak. No matter how cheerful disposition you have, this is an unavoidable truth.

The emotion I feel about Kalydeco I find captured in art, or moreover the emotion about CF for me has been captured. It was a dream brought to life in the form of a fresco by the Renaissance artist Raphael and his assistant,'The Deliverance of Saint Peter'.


Better than any of my words could ever express. After lingering through the endless corridors or "rooms" in the Vatican Museum, on route to the Sistine Chapel, I was completely taken aback by this amazing work of art. The detail! So many times I have poured through art books, never really understanding how magnificent the fresco was. Nothing takes the place of seeing in person. Time stood still, I marvelled in awe. I felt like kneeling it was so moving. How terribly cliche of me to say "it spoke to me", but it really did. I related to the emotion and essence of this piece. Raphael seemed to know me, my fear, my love, my sadness, my trials, my hopes. I felt understood, it was comforting.



Breathtaking.... in a good way!


Kalydeco has given me the closest thing to deliverance in this life; The deliverance of me! My dream is closer than I ever hoped possible. My hope for all people living with Cystic Fibrosis, a Prayer the painful past experiences will become a distant memory....






Tuesday, 27 November 2012

Crazy Crazy Unbelievable Brazil

"To love means loving the unlovable. To forgive means pardoning the unpardonable. Faith means believing the unbelievable. Hope means hoping when everything seems hopeless." 
                                      Gilbert K. Chesterton 

It's taken me a bit of pluck to post this entry as the subject is very questionable. I have a little confession to make... my trips to Brazil weren't all just for fun; I also went to see a spiritual healer. Yes I'm serious, it's true (I know what your thinking; 'Say what??!'). Believe you me, this is the most 'far out' thing I've ever done! However, stay with me I'll try to explain best I can, it's not as freaky as you might first think... maybe it is... I don't know, but I did it!

Only in Brazil; Butterflies sit on One's hand
"I do not cure anybody. God heals, and in his infinite goodness permits the Entities to heal and console my brothers. I am merely an instrument in God’s divine hands.” – John of God.
Deep in the heart of Brazil is a tiny town call Abadiania. There is a man; Joao de Deus, or John of God, allegedly works through the gift God gave him when he was 8 years old (I believe? but don't quote me on that!). He is from a poor farming background and only has third grade education. No medical training. Saint Rita and Saint Ignatius are said to have appeared to him explaining his God given gift of healing. Ever since people from all round Brazil and now the world go to see him when all types of medicine have failed them. A last ditch effort if you will, to survive the odds... Joao does not claim to cure, "only God does that", he makes no false claims. His treatment at Casa De Dom Inacio is free. You are asked to donate $5.00US for 'the medicine' he prescribes for you (which is a series of traditional herbs) but if you can't afford it, you'll still receive them, no worries. There is also special holy water you need to drink, which is also free. If you google Joao, you'll get the sceptic's guide to it all, the good the bad and the ugly. That's fine, I'm not sure of it all either, but I know what happened to me! (Please Note: I was never told to stop my medicines, ever! and I didn't... my not having a nebs in Brazil was because the power adaptor wasn't generating strong enough power to make my nebulizer work there)




At this point I need to add, there are a lot of really odd people attracted to this place because they've named Joao as a "medium" which is actually incorrect. Joao is Catholic, therefore the Catholic name for him would be 'mystic'. His gift comes from Catholic origins, not New Age or other religions. They try to 'cash in' on his gift by offering you their gift! I was like Gene Symons,"no no no no.. no". One man said I was an great ' African warrior queen' in my past life... "huh? actually I don't remember that, so umm,  I need to go...away". I had to block the other stuff and focus on the core of what was happening. As a Catholic I do not believe in past lives or New Age beliefs, no disrespect intended. We can disagree, but no need to be disagreeable!

How Joao's healing gift works is beyond difficult to explain, or even believe!! I found it extremely difficult to rationalise, but now I kind of get it. Joao arrives at the casa surrounded by his assistants. He comes to the front the very large open room (hard to describe it, like an open hall). The space is always packed full of people, hundreds, sometimes thousands. It falls silent with one look around from Joao. We are asked to join Him in prayer; an Our Father and Hail Mary, Glory Be. Suddenly Joao's whole body moves like something has come over him and his head is down shut eyes then up he looks. Completely different countenance, appears to be a different person. This is the moment the "entities", otherwise knows as The Holy Doctors of Brazil take over his body for the following hours. Different doctors come different days, and on the feast of Saint Ignatius, the great saint himself is said to come. After they leave, Joao remembers nothing.

In His own words....



He (or the "holy doctor's") performs "visible" operations or "invisible" operations, your choice. He is said to have xray vision at these times and sometimes they even blind fold him during the operations to prove it's not Joao doing the work. I saw people being opened up and Joao's hand moving under their skin, no anaesthetic, hardly any blood, stitches them back up with invisible stitches (no needle or thread!) painless. No bodies wounds get infected. Tumours being removed, cataract's and who know what else he was pulling out of some?! But I can say for sure it was coming out of the people not "chicken livers" as some reporters have said. One girl was paralysed, could only move her eyes, she was walking within weeks, a bit awkward, but still walking! It was confronting to say the least, hence my choice of "invisible", It was so confronting that I was not totally convinced it was safe and wasn't prepared to take the risk.

I lined up to go into the "operation room". I was told to place my hands upon the organs that I thought needed help. I crossed my arms over my chest. I was to shut my eyes and pray. There were about 30 others in the room too. Suddenly I felt myself being leaned forward, felt like someone was supporting my face, I felt a sharp pressure across my back, near my spine. No body had touched me, it was one of the doctors. Then tears, tears, tears.  I was not particularly upset, just quiet tears, but I couldn't stop them. I have no idea why! Perhaps shock that I felt something. I honestly didn't expect anything. Afterwards the "patients" are to go and have a special soup (also free). It was kind of like Brazillian minestrone, it was actually really good! I ate up and went back to my pousada to rest. Later that day, I felt a bit of pain when I moved, I turned and looked in the mirror. There was a very dark purple bruise, right across where I felt the sharp pressure. About 4 inches long, directly behind where my pancreas sits. I ran out and showed everyone, they simply couldn't believe it. The western travellers come in spite of what we think is true, perhaps there is something here(?) deep down there's a lot of doubt, but when you see and experience things like that, it put a whole new light on things.

             
                   Pictured with Joao ... clearly my hair dryer didn't work with the power adaptor either!
(Very bad hair day!!)


I felt a bit like the New Yorker native and traveller, Antony Bourdain trying to relate to something I'm totally unconvinced about. Sceptical and dare I say cynical? It all seemed totally 'wack' to our hedonistic western minds, but I cannot deny what happened to me. I also can't explain it. At worst it's balloni, cost me $5 bucks... but the soup was good!

At best, perhaps Joao de Deus helped. Perhaps God has used it to deepen my trust in him or Faith to simply believe in something bigger then this life? I witnessed so many people with belief that it was heartening to see. They were happy, I was happy! Met and made some lovely friends. No regrets at all, I am very thankful for the journey, have total respect Joao and the work he does. I will return some day. Can't say I haven't tried everything to kick CF to the curb!

This is Oprah's documentary about Joao De Deus:



Home again. Ultra sound to check if anything thing had actually happened. My doctor at the time gasped, I had no Pancreatic Cysts ... To this day I have no diabetes's, I previously did have blood sugar problems. My father and sister have it. I'm just saying... can you deal with that???? I'm not even sure if I can!

Blows my mind....


Friday, 23 November 2012

The Happiest Place on Earth: Bom Dia BRASIL!!!!!



It's a big call; Disneyland is not THE happiest place on Earth (it's alright) but Brazil takes the top spot!... you heard it here first!! It's Crazy Beautiful....


From the age of 18 onwards I had the time in my life. I travelled more and experienced the happiest place in the world, Brasil!!! Oh, the happiness!! My first visit was during Carnival, that's probably a big reason why it seemed full of life. The entire country buzzes with excitement! I really did have the time of my life, I loved it!! The people are so full of life, friendly and generous. They don't care a bit what you look like. So funny some of the "swimwear" sported on the beaches, regardless of their shape.. I learnt a lot from them, to appreciate others who they are on the inside, not instantly judged by aesthetics (Being interested in Haute Couture, that was a pretty big lesson for me!*haha!). It was completely and utterly relaxing, I felt free to be myself. I couldn't resist another trip the next year, I was there for 3 months. (with no nebulizer either, the humid climate agreed with me at the time... or perhaps just being relaxed and very happy did the trick?!).
The plane landed at night. There was a spectacular thunderstorm, never felt turbulence like that before (only a few acute drops over Tibet made me panic once before). The light went out in the plane and all the passengers screamed... but I didn't, I gazed out that window in awe. It was truly the most incredible image. The lightening reflected the clouds that were the thickest I've seen in my life. It was like floating through a Disney cartoon!! We bounce and hoped on, through and over, them like puffy cotton wool... It was sublime. Felt like time stood still, in that moment I didn't mind if I died it was so awe inspiring! I only wish I could have captured a picture of it. The plane turned around to Sao Paulo to wait till the storm blew over Rio. I'll never forget that beautiful storm....

Rio De Janeiro is nothing short of breathtakingly beautiful! I stayed at hotels on spectacular Ipanema beach the first time, amazing Copacabana the second visit. Later I would stay in traditional pousadas, which were my favourite way to stay, the owners were lovely and made some really good friends. Can you believe it? I actually got a pretty good tan there... without burning a bit!!! Impressive for a Celtic lass! The food, my goodness... the food!! Who new Barzillian cuisine tastes sooooo goooood. I had no idea and ate like a queen for a song. The tropical fruits were top quality. Freshly made Juices on every corner. I bought a branch of green coconuts, dragged them back to my rooms, it had about 20 coconut on it!*haha.. and I drank them all!! The meat is cook over flames and cut straight off he sword onto you plate. Talk about service.. and always with the happy Brazillain hospitality! My little tip: Make friends with your Taxi driver, they eat in THE best local spots round town and you'll get a taste of real Brasil! Yuuuummmmm!!




My travels took me to the basin of the Amazon River, about 4 hours drive from  Brasilia. The jungle was incredible, little monkeys, hummingbirds everywhere, I heard Jaguars calling our at night, mozzies as big at your fist (I didn't know what it was at first!*haha) massive spider in my room (that the local man said can kill you)... ok so that's not the greatest experience I had.... I also just missed stepping on a 4 inch thick snack with inch wide red and black horizontal stripes. It slid off as I stepped over it... I did yelp about that!!


The waterfalls or Cachoeira, are a must. Local tip, don't swim in the ones the locals aren't swimming in... there's a good reason why they aren't!!!


Hands down the most touching wildlife experience was on one of our regular hikes around the country side, a group of us stumbled upon a little waterway coming off the river. I walked alone a little way up under a perfect arch of jungle. It seemed that it had been trained to grow in the shape a tunnel. Then I heard a flutter, so quiet it's hard to describe and thousands of brilliant butterflies enveloped me. It looked like thousands of feathers gently floating around. It was... exquisite.




Me at the Cachoeira (before I got a tan...Obivously!)


Obligda Brasil!! Someday I will return with my beloved , but untill that happy day my memories are the sweetest and I will cherish them forever... Love, Love Love. xox





Wednesday, 21 November 2012

Hola Mexico!

The point at which my health went down hill; age ten. Caught a chest infection off the Lung Function machine at my annual check up. Cough presented from then on out. On and off oral anti-biotics kept it under control, plus lots of VitC, Vit A, garlic, Echinacea and zinc supplements. Despite this health was deteriorating gradually. In Australia I saw countless of the best complementary medicine practitioners around, Ayurveda, Chinese medicine, Homeopathy, Osteopathy, Acupuncture, Chiropractic, Naturopathy... there's more, but you get the picture! Each one helped in their own small way, but could never completely fix the cough. It had already caused lung damage. You may be thinking,"well if the natural approach is so great, why did you get sick?". First of all, it only helps, assists and contributes to my general well being. The degenerative effects of CF are too big to tackle with a little remedy here and there (my goal being to slow down the degeneration). It seems common for CF to flare up during teen years, hormones and a teenage attitude probably contribute. Once lung damage occurs, its an uphill battle. Why didn't natural remedies prevent the damage? Like I said I hit 10 and beyond and became rebellious toward my health. I felt good and took it for granted. I didn't think it would hurt to have as much junk food as I could get my hands on while mum wasn't there! That's one reason, I also stopped physical activity by at least 75% compared to what I was doing before the age of ten. I didn't think, period!

Another cause to my health decline, without going into details, was that my family experienced a very difficult period. Which caused me more trauma than I can say. This traumatic period lasted until I was 17. Stress has a very detrimental effect on health.

I ended up in intensive care unit for a week, after a bout of serious pneumonia, which I might add had hit Adelaide in general that year with a vengeance. I flat lined. My oxygen level dropped below 75. I could hear them getting those electric shock paddles out. I was thinking,"I don't want to die, please God, not now, not now, not now, please please please". I felt my body floating just above my still body on the bed and then woosh, back it came... they said I needed to go on the list for a liver, heart and double lung transplant.

So Mexico? Why on earth Mexico? True they're not particularly renowned for CF treatment. But there is a cluster of hospitals across the boarder that provide sick people, mostly Cancer patients, with different choices of treatments and therapies. It is considered by the medical profession as radical and false, that's why the hospitals that do this have to set up in Mexico, because the FDA don't approve of them.


"Hatter: Have I gone mad? 
[Alice checks Hatter's temperature] 
Alice: I'm afraid so. You're entirely bonkers. But I'll tell you a secret. All the best people are." 

So what led me to this "madness"? Well first off, it's not nuts. That is an assumption made from ignorance. True, unfortunately there are false people in the alternative health scene that are to be avoided like the plague. Generally, people who offer quick expensive fixes are not to be trusted.
It was concluded that I needed hospital care. We consulted with the Children's Hospital, which unfortunately was also one of the most traumatic consults of my life. It was scary. I think had the doctor's manner been better I may not have been so terrified. The 6 foot + doctor manhandled me down the corridors by the back of the neck into the physio room to get percussion's from the physio, but he hurt me. It was so tight and rough that I was scared. Given the home issue, I was a bit hypersensitive too. They said admission "right now". Mum had the pen ready to sign the admission papers, I was beside myself. I tugged at her sleave and begged to go home. So we said we needed to go home to pack a bag and we'll be back later... Pack a bag alright!! To Mexico!!

Enter the mind of one who chooses to take an alternate path... In an instant I grew up. I took responsibility and for the first time grasped what was a stake. The inevitable end, which I could see my life leading to at the Australian hospital, was terrifying to me. I had experienced life without constant hospitilisation, I craved it again. I didn't want to live like that. I wanted a family. If I stayed on their course there was no hope of that. These thoughts were not talked about, nobody influenced me to think this. I surmised it by witnessing what the hospital's here offered, the life other CF patients had to lead. I wouldn't go down without a fight, this other path offered a glimmer of hope to me that I one day could have a family, live a better quality of life. Fortunately my father could afford to pay for it! So I grabbed onto it with all my might. Similar to an athlete, totally single minded and dedicated myself 100% to getting better. I had an absolute drive to survive this differently and live on to better things... right or wrong, it worked out pretty well!

In the endless reading about different therapies, mum discovered The Gerson Therapy. There are a lot of 'Nay' Sayer's about Gerson, but the results of the "proven" drug treatments at the time weren't a whole lot better to me! I rolled that dice!!
It was discovered by a German doctor, Dr Max Gerson, originally to treat Tuberculosis, which he had great success. A common misconception is that the hospitals in Mexico are rather lacking, but the opposite is true! The hospital provided standard hospital care: Doctors, nurses, physios, pharmacy that prescribed drugs if needed, oxygen, surgeons, xrays, emergency department. etc. The therapy was the primary treatment though and drugs were avoided unless absolutely needed. For instance, I ended up taking an oral course of Cipro whilst there, to help kick the puedomonas. The doctor's were world class, amazing, intelligent and very compassionate people. My first stay there was six weeks, I left feeling the best I had in years! The process of detoxification was painful, I persevered and reaped the rewards! Without the Gerson therapy I wouldn't have been able to have children. It restored my body to the best it could be. It took a long time though, 2 years on the maintenance therapy. I returned 4 times, also to  Ingles Hospital, Hospital Santa Monica, for oxygen based therapies would finally eradicate drug resistant MRSA ad Aspergillius (BTW: they make you feel like your dying!) that I picked up back in hospital in Adelaide 4 years earlier.
*Please see note at the end of this blog.

Pictue of me returned from Mexico after getting the all clear of Golden Staph & Aspergillus


Obviously, this is not for everyone, actually I was the first CF patient they'd ever had and only 2 years ago they got their second one! It's concidered extreme and risky by some, but I was always cared for by the best in their field. It was a very well informed, considered and calculated decision ("risk" some would say) on our part. I never risk more than I can afford to lose...



*Disclaimer: 26.11.2012

Dear Readers,

I am a big supporter of The Gerson Therapy & only have positive things to say about it. However today it has been brought to my attention that articles on the Internet exist about my medical history relating to The Gerson Therapy, that contain some inaccurate information. I have written today to the The Institute to get this clarified and corrected. My Cystic Fibrosis was NOT "reversed" as stated in the articles.
I am happy to state this much about the Therapy: It improved my digestion & nutrition, it helped reduce mucus production, it cleansed my body of built up chemical's, relieved my chest, slowed down degeneration and prevented me from having multiple Transplant's. Generally helped me get better from where I was & enabled me to go on to have children & better quality of life. I would return in an instant if my health required it! 
I was not cured and do not believe The Gerson Therapy can reverse CF. I believe that it helped treat my CF better naturally.
I wish to clarify these points so not to give false hope or misinformation about my experience.

Thank you,  Faye Upston

Tuesday, 20 November 2012

Cystic Fibrosis...Naturally

I would love to share with you a little of my health history. Things that contributed to my living as long as I have and being able to have children, what carried me through to this point.

My name Faye Amy, means "Faith Beloved", who knew it was to be so appropriate to my life?! The first six months of my life apparently were normal, I thrived and according to my parents was a happy baby. Until I was Vaccinated for Measels, Mumps, Rubella. (lots of unanswered question about this...???). I became very very ill and could not get over the reaction, many tests later, I was diagnosed with CF, immediately hospitalised because I was extremely sick. I was there for 3 months. My Scottish Grandfather, whom I share a birthday with (5th Aug) dubbed the crib I was in "The wee throne of death". Finally the doctors told my parents to prepare themselves, I would not make it through the night. Father Doherty was call in I was anointed, given last rights, Batised and Confirmed all at once, a prayer to ask God to spare my life. Sister Carmel was also by my parents side and blessed me with Holy water from the Sanctuary of Our Lady of Lourdes, France and gave me a pair of Rosary beads blessed by Pope John Paul II. My parents went home to rest. The next morning they anxiously arrived at the hospital. However, the nurses excitedly met them, "She pulled through! We can't believe it, this has never happened before!". I was sitting up and smiled for the first time since becoming unwell. My doctors told my parents to go place a bet on the races, they were so "lucky"!
This is the picture the nurses took for my parents, it was the first time I smiled in hospital after escaping death...



Finally I was home, my mother had to learn all about caring for a child with CF whilst raising my 3 older brothers and sister. It must have been very difficult. I was not a mild case, there were endless medicines and enzymes galore. As I mentioned previously, I'm not overly interested in science, but my mum is a 'science buff' for sure... actually obsessive! And that's a good thing for me! She looked into everything, ingredients, additives, tasted the stuff and finally found many natural alternatives. She knew there must be another way to manage this condition, without excessive use of drugs all the time. She changed my diet. I grew up thinking it was "normal" but in retrospect is was very healthy.


                                     
My family in 1980 (mum's taking the picky!), I'm the Baby, Dad, Lucy, Michael, Dominic & Simon.

Lets just say right off the bat: The diet that the hospital suggested at the time was S**T! Chips, deep fried foods, ice cream, soda, fast foods, jelly, lollies, cordial, margarine poured over all the food! Come on! That is just ridiculously bad for a healthy person let alone a body that can't digest!! No wonder they said 15 enzymes each meal for an infant; to digest to indigestible!! Where is the nutrition, the live food that contain natural enzymes? What habits is this setting someone up for in the future? I understand the need for calories, but for heavens sake Dietitians please encourage people to get those calories through making healthy choices!!!!

After my second admission at 18 months old, my brave Mum said "NO, there has to be a better way". Thank God! The research began. Macrobiotic was the first approach she found that addressed mucus reduction. So I was put on a modified version of that for the early years. Lots of natural (not synthetic) Vitamin A, which is a Mucus thinner. Vitamin C, fights bugs. Garlic, natural anti-biotic properties. Aloe vera juice, aids digestion and contains Mannitol (which is in new drug Bronchitol) Almost zero hospital enzymes (only if I ate out or something heavy). Fresh apple and carrots juices. I thrived no weight issues, no cough. stayed out of hospital till I was 16, only had an annual check ups at the CF clinic. This is why I never knew anyone with CF, I lived a fairly unaffected by CF childhood. Also, mum was very cautious of cross infection, so kept me as clear as possible from people with flu's and infections. If I was tired she'd keep me home for a day from school every now and then. Normal precautions.

We lived in the Adelaide Hills my growing up. I was constantly outdoors, running around, riding bikes. Walking my Bernese Mountain Dog, 'Paddy Bear' and my dear Neighbours Papillon, 'Jezz'. Despite their size difference, they were very good friends!
I always kept very very active. Played sports and swam at Brighton beach most weekends in summer and went sailing with my Dad. I didn't have a cough till I was 10, I didn't realise I had CF till I was 12. It was bliss. I just thought mum was really full on about what I ate and didn't really know why! All I wanted was sweeties. Typical kid,"get candy, get candy, get candy"!

I did get treats occasionally, but they were treats not everyday things. Which made them more special actually. I loved the times when mum and I would go to the cafes together, Cinnamon toast and hot chocolate. Lovely times we spent together. I felt very loved by my both parents, despite the fact mum is Scottish and Dad's 1/4 German nobility!!(neither the Scott's or Germans are not renowned for their affectionate natures!*haha) My CF softened them up, plus I was a very affectionate happy child apparently. Perfect me!*haha!

My health fell apart when I became a teen, became more sedentary and rebellious about my diet. Kept eating rubbish on the side when I was at school and friends places. This resulted in a week in the intensive care unit in Adelaide, followed by several hospital admissions. Plus, 4 different trips to Bonita Mexico, to 3 different hospitals that offered alternative treatments to regain condition and kick Golden Staph (MRSA) and Aspergillus, both I had for 4 years which I picked up in hospital and both not responding at all to heavy drug treatments. Cleared them both on the 3'd trip to Mexico, in 12 weeks at Ingles Hospital (I write another blog my travels to Mexico)


I wish when I was a teen I new then what I know now, I would have taken more care of myself, but can't cry over spilt milk. Just have to keep persevering with what I can do to make it right today. If I had a child with CF myself, I now realise there is no need to pick just the one 'diet' as such. Many cuisines around the world have healthy fresh benefits. Chefs like Jamie Oliver promote brilliant, tasty, quick and easy food that's good for you! So I think this is something I would do differently myself, but I have no resentments at all for the food I was provided with, it helped me stay healthy. Please don't misunderstand my message, I do not for a second think food will fix all the problems CF causes, but it can greatly assist and improve general well being that is vital for longevity. This has been my journey; I'm just saying think about making more healthy choices for life... xo



Please note: These are just my personal opinions and experiences. Please do not take them as judgments or advice, simply sharing my story and ideas, Thank You!

Sunday, 18 November 2012

Where the Rubber meets the Road: Life on Kalydeco

Okay, enough with the sweet talk already, whats life really like after six months on Kalydeco?
Let's get one thing straight: I am not cured of Cystic Fibrosis. 32 years of this deasease has well and truly left it's calling card on my body. However, Kalydeco is about living the control (as my friend Emily Schaller letsrockcf.org aptly put it). That's the best way to put it, controlled.

I still need to do my treatment's just like before Kalydeco, but they last longer and are so much more effective! Nebulizer am/pm: (Salbutamol, Ipratropium, anti-biotic) and in the middle of the day pulmozyme. The big improvement for me recently was that I was able to go off anti-biotic's for 14 days. You may think "big deal", but I've not been able to do that since I was 16. Baby steps! I went back onto a half dose because I felt a little sharp pain in my right upper lung, best to be safe than sorry. In terms of mucus (you knew mucus had to be talked about!) the production is hardly at all, what dose come up is from the damaged parts of my lungs. I have extensive bronchiectasis, a common problem in CF caused by chronic chest infections. So the pseudomonas is still present in those areas, hence the inhaled anti-biotic. I hope over time I will be able to kick the infections to the curb, it's still very early days. A more recent addition to my meds is Bronchitol, but I want give that it's own spotlight in another blog.

In terms of Physiotherapy. Before Kalydeco my daily routine included: 40 mins on The Vest with PEP. 20 mins Zen Chi machine which I have to add is still THE most effective physio equipment I've ever used! It relaxes all the muscles supporting the back and chest making the mucus dislodges like nothing else, huffing it up on the Zen Chi makes it easy work! 2nd best machine: Bipap about an hour before bed with pep. It was a life saver when really ill, I never knew taking a deep breath could feel so good! Really effective for clearing the lower lobes of the lungs. When I had a very bad chest infection the old faithful percussion was done by my lovely Benny! Now my daily routine is much less intense: Biggest change NO MORE COUGHING FITS!!! just after Nebs,  PEP for 10 mins is enough to clear what little production I have and that keeps me going all day (if I miss it sometimes, I don't miss it!) The Vest I use if I have caught a cough, so not much. Bipap, I still do before sleeping, but mostly because I love the deep breathing, so relaxing! (and I sleep like a log!!) Zen Chi, again is mostly if I have a chest infection.

 A bone of contention with my physiotherapist's was "what exercise do you do?", when your clearing your chest this much and not eating a whole lot, plus chasing 4 little boys around... well I had no extra energy to exercise. Walking was the most I could manage, sometimes.
Since Kalydeco, I can RUN! I ran with my boys and didn't need to stop to cough! I got a ski machine and manage 30mins no probs. I got an ab twister, 20mins no probs! And walk everyday 20mins no probs!! This was IMPOSSIBLE before Kalydeco. I now have my muffin top to motivate me too! (again impossible before K! *giggle) Still working on that one!

Enzymes are almost zero. Only have a couple with a heavy meal; i.e: Roast dinner or Lasangne. Even with hardly any on board I continue to gain weight, no stomach aches or toilet issues. I hope in time I'll not need them at all, but even this is a very agreeable change!

So there you have it, I still have CF no doubt about it, but its not that frantic chasing the cough business that I had before. (I have an important natural health routine too, which I'll blog about another time) Once I clear my chest, I'm off and away. I can make morning outings, which I couldn't do before. Social life back on track. I hope over time the upkeep becomes less and less. I'm a patient women, I am perfectly happy to sail along, as long as the direction is up Up UP!

This winter came and went, Spring is here in Australia and usually in November sometimes September I have an admission for IV anti-biotic's... NO admissions since taking Kalydeco!!! Colds and Flu came and went without the need of IV's, recently Impossible before Kalydeco. I've only taken Ciprofloxacin once the whole time, usually I would have had to take 4 courses of it at least over Autumn/Winter/Spring.

Funny thing happened the other day, I ran into an old family friend who catered for our wedding. She was staring at me, double taking, unsure if it was me. She turned away to get in her car because she didn't recognised me!! I said,"hello Liz, it's me, Faye!". She nearly fell over!! She said,"OHHH! I thought I recognised you but then I thought 'that can't be Faye'. You the picture of health!" She said she was going to visit me but thought I'd be too sick!! That's the first big reaction I've had from my friends, so funny! Made us laugh. Quite moving to realise people can see I'm getting better, these are the Little moments that really hit home.


Wednesday, 14 November 2012

When life throws you lemons, you gotta ride that lemonade!

“Do you know what I like about comedy? You can’t laugh and be afraid at the same time—of anything. If you're laughing, I defy you to be afraid.” Stephen Colbert

Can we measure the worth of positivity in battling a chronic illness? Surely there must be a scientific study out there! Well take it from an applied scientist (me!) the only way to keep going with a disease like this is Hope. The old adage,"where there is life there is Hope" Ive found to be very true.
Yes, I'm also realistic. This disease is gruelling and has given me a melancholic inner thought which I don't think naturally I would have had, but on the positive side also that depth has made me a better person.
Often situations are so intense that it's my penchant for superficiality that got me through many a dark time. We must hang on to laughter, be happy and optimism. Cannot live without it...
Acceptance I believe is at the core of coping, without it sickness makes us bitter and twisted. Self pity is the enemy, it will make all burdens seem insurmountable. Weakens our will and ability to keep fighting. The second I feel a bit self centred, 'boo hoo' for my self best medicine is watching a musical or comedy!
I defy you not to feel happy whilst watching 'Hello Dolly'! (okay, so might want to kill yourself if you're a guy, so feel free to watch 'Top Gear', feel better!)




Growing up I had a particular devotion to Saint Padre Pio. He suffered so much for God and was serene whilst enduring his trials. One of his messages to the people was, "Pray, Hope and don't worry". That has always resonated with me and I always have aspired to do so. There has been a scientific study into patients who pray or who are prayed for have 70% better recovery than those who don't, that's something to think about!

You know, I'm not delusional by saying 'I like having CF', but I accept that its something I have to deal with it. If I had a choice of course I'd say 'no thank you, I'll pass', why else would we fight it so much? I have my moments like everybody else. We must focus on the positive to keep motivated. Our family, work, interests, the wonderful people in the CF community.
No doubt CF has brought me closer to my family, it would've taken years to be this connected in such a good way. We realise life is short. Our devotion to each other, I'm incredibly thankful for.. what a Blessing. If I died tomorrow, I can say I felt truly loved. I would not exchange that for the world! Isn't that what life is all about anyway?

Please don't give up, or let CF rule your heart. It's a thief. It has no right to hurt us, I do not deny the pain, but I won't let it take my spirit down with it. It make take our lives, but not our souls...

                             "Remember the Tin Man, found he had what he thought he lacked"




Tuesday, 13 November 2012

Kalydeco: The Discovery

“So do all men who live to see such times. All we have to do is decide what to do with the time that is given to us.” 
J.R.R. Tolkien, The Lord of the Rings ~

A constant question I get asked by people,"how did you find out about Kalydeco?".
One evening I was watching a documentary from the UK spotlighting different diseases and the genetic links. Alcholisim, MS and a young women with CF appeared on it looking into the new drugs in the pipeline. That's the first time I'd heard of gene therapy. I got interested then googled new treatments from CF...KALYDECO!! I had no idea it was even being developed, since the mid '90s. I read further and saw it was only for a certain gene mutation, only 4% of the CF population. I didn't know mine. 'What are the chances?' I thought. Never the less, I always face things head on so I requested my CF gene's be identified. In the end they could only identify one (I'm to see a genetic counsellor soon to find out the second). Two weeks of  w a i t i n g... what if? who knows? What will I do?.. then on the Friday night my doctor called, very happy and excited for me and my family; I was G551D. The words floated in my mind, it was just one of those stunning moments in life, like after birth! Surreal. Then all I could think, 'why me, not Katie?'. She passed away a week or so later.
So it was the best of times and the worst of times, but over time it has sunk in and I realise what a gift from God this has been in our lives.
The big lesson I learnt is that you have to be proactive in your health care. Always look, seek, search. High and low. You never know whats on the horizon. I should have been more so in retrospect. Just 18 months before I knew about K, I was considering the transplant list. I made the decision to make that call the next day to go on the list, when we had a total surprise package; I was expecting baby Sebastian... I hyperventilated, I thought we were going to die. About a year before I had an accident and seriously fractured a rib when my health went downhill, I had been resisting the transplant for over a year. Initially it was a very scary time, but I underestimated my capabilities through fear. I was fine, full term baby natural birth, no oxygen or wheelchairs (in any of the pregnancies), shopping, taking care of my other boys right till the end. First breech birth to boot! Everything went perfectly well and I realised I'm stronger than previously thought. A lot of mental trauma made me spin, the transplant talk made me see stars and the consult room appeared to jump. I was terrified and it played on my mind constantly. Nothing can prepare you for it, but I think after the experience I could cope with facing it better now. I hope Kalydeco puts it off for a while yet though!


Always keep your eyes wide open and ears pricked, you never know where life will lead you! God knows, it always work out for the best. xo

Monday, 12 November 2012

Let's Get Physical

Freaking out just a little bit about my K-bod! Since starting Kalydeco I have steadily put on an average of 1-2 kg a week. I was cool with that, I was embracing my inner Marilyn .... problem (?) My fat don't sit like her fat did!... and IT'S NOT STOPPING!!!! How ironic, years and years of battling to eat and trying to keep the pounds on, now I can't stop it. I'm like Violet Beauregarde (charlie & the chocolate factory), only my 'gum' is turning me into a giant rice pudding!!

Weighing in at clinic is a routine part of the CF check up, one feels like a jockey before the big race, "correct weight!". Generally my weight remained the same, only much less if I became unwell. I was always apprehensive stepping onto the plate. 41kg was my average before Kalydeco, but it was going down gradually over time. My perfect BMI is 50-53kg... since the last month when I was 53.2kg,  I am now literally sitting on 55kg!!! I've gone up from Australian size 4-6 to an 8-10. Heads up: a new wardrobe is expencive, start saving now!

One of the new lovely experiences in my K world is for the first time I walked into a patisserie and my mouth actually started to water and I could taste the delights on offer! Words fall short to convey what this means to me, as I've always adored cooking, epicure, gourmet wine and food; cliche foodie. Now I can really enjoy it all! As you can tell by my weight I have been taking full advantage of this new super power!
What is one to do? I bought a ski machine and ab twister!! ha ha! .. And 'yes' I've used them, clearly not as much as I should. This new dilemma is really tricky, going from skeletal to festively plump!
I have had the help of a secret weapon, Baked Rice Pudding! I eat it anytime of the day...
Here's my recipe for those who wish to pack on those extra pounds:

Baked Rice Pudding
6 tablespoons of Organic Aborio Rice
200ml Organic Milk per Tablespoon of Rice
6 tablespoons of Double Cream
2 tablespoons of raw Castor sugar
1 teaspoon of ground Cinnamon (or 1 stick)
1/4 teaspoon of ground Nutmeg
1 teaspoon of Organic Vanilla extract
3/4 cup Sultanas

1. Set Oven to 160C
2. Butter heaving baking dish (at least 2 litre capacity)
3. Sprinkle rice, cinnamon, sugar, nutmeg, vanilla & sultanas over the bottom of the dish
4. Pour milk over top
5. Place in oven and cook for 2 hours. Stir every half hour and then at the last 30 minutes stir in the double cream and increase to heat a bit to 175C.
6. Serve steaming hot or eat chilled. (I have mine with Strawberries: Crush them, stir in 1 teaspoon of sugar and 1 teaspoon of balsamic vinegar leave to sit for 30 mins) ... YUM!!!
My mouth is watering right now!!!  MUST BE STRONG... but I hope you enjoy!

This may look like slops, but it'll pack on those pounds in no time!! 



Welcome to a Women's World....





Thursday, 8 November 2012

Keep Kalm and Kalydeco

Warning: This blog contains really gross details!! I'm not proud of it... but at at same time I am (?) What have you turned me into Kalydeco!! It's just not Audrey... *sigh

First dose: 11 a.m. I bought full fat yogurt with wild berry topping to eat it with, because you need fat to make Kalydeco work. As I opened the lid, it spilt all over my Alannah Hill jacket ($17 dry cleaning bill...I know right?! rip off!) Anyway... so I took my Kalydeco... anti climax! It's such a quiet action, 'swallow'... we pursued this moment, thought about it and finally here it is!




It felt oddly 'normal' (is that an oxymoron?), and guess what? That's the way it should be! 'Normal'!!
So I took it... waiting waiting waiting ????... then ever so quietly, gradually; it began. My chest felt very 'wet', lots of  noisy wet sounds. To cf people, you'd know it to be like taking double pulmozyme and hyper tonic saline all at once. Not painful or dramatic. Just really wet! I coughed up a fair bit and then I coughed up a very old looking bloody plug. I called my Doctor immediately (at 9:30pm! Thank you Jude for always taking my calls!) She said keep an eye on it, if the bleeding gets worse come to emergency dept, but otherwise it's a good sign Kalydeco is working... it's WORKING!!!! I was so happy to get a reaction. My lungs didn't bleed anymore and my chest continued to clear. I must add, it was not nearly as bad as I had expected, very gradual. The next morning I was afraid of a massive coughing fit (as usual) but was surprised at how easily everything coughed up. Very easy and not out of control fit. This was at the time THE worst part of my day! What an apsolute RELIEF!!! Even if this as all Kalydeco did for me, I'd be happy. Within a week of starting I hardly had a productive cough and was sleeping through the night. My appetite began withing the first day, I put on 1kg in the first week. My energy gained back rapidly, as soon as I could eat it improved. Before Kalydeco I was on tremadol for back, joint, muscle and stomach aches, and frankly to dull my mind! It took the edge of the stress within 20 mins of taking it I felt my issues wash away, it's could be very addictive for the wrong person, no doubt, but I didn't need tremadol (pain killer) from day one, or ever since!
A bit left of field to what I expected, because I've never seemed to have sinus problems before. I got smell like a hound dog, trust me with four boys you need a good sense of smell! Anyway, a day or so in my 'throat' started to burn, it was right were you sinus reaches your throat. It got worse and worse, couldn't swallow big things or talk much. I thought the worst: side effect! The next morning it was much worse, but I push through the burning, sucked back or down and to my surprise it was a HUGE plug of hard old mucus, at least an inch long and the base was like a 10c piece, who new?! The burning and pain subsided instantly. WOW!! The next morning, the same process started again and then eventually another plug was dislodged from the other side! This continued for about a month until everything was cleared out. Kalydeco is amazing!! The journey had begun, it was my biggest "reaction" to start with. Better out than in!!




Monday, 5 November 2012

Over the Rainbow... and Moon!

The day finally arrived: K-Day!!
Benjamin and I drove to the hospital together. I was consoled; there was as we emerged from the church on our wedding day, and as on the birth of our first baby, Charles, a beautiful rainbow illuminated the sky. Perhaps a sign from God? (and given these special events were all at different times of the year) maybe, maybe not, but I'd like to hope so...

I was not as excited as I should have been. I was apprehensive, nervous, fearful and sceptical that Kalydeco would be as good as it sounded, well not for me anyway. Too late? I felt so sick. 40% lung function (dropped lower with infection), endless coughing, couldn't eat or sleep. Hours of physiotherapy a day just to try and save my lungs from anymore damage. The vest, zen chi, bi-pap, pep, nebulizer after nebulizer, pain killers and worry... it was simply desperate. I had no energy, left I was so exhausted and yet could not rest. I was driven by my family. Often I thought I could go no further, then I'd hear my boys coming and I'd be 'on'. With the support of my parents, we have protected them from the harsh reality of CF, they've not even heard 'cystic fibrosis' mentioned. They need not worry their little hearts about that at their age and I will do my best to protect them from it until they are older. They know mummy was born with a cough, and now it's getting better! Indeed, I myself only became really aware of CF and what it was when I was in my teens (I'll explain why in another blog). I am SO thankful to my parents for protecting me from that and giving me an innocent childhood. I was not worried about my health as a little girl and simply was looked after and trusted my parents as all children should.

As we drove, my mind raced and yet stood still.  It took 9 months of constant phone calls, emails, letters and consults to be finally approved for Vertex's 'Named Patient Program' (NPP). The NPP is a compassionate program set up for exceptional circumstance's, patients who are FEV 40% and under or have other life threatening health complications. Even still, we needed to get our government and hospital to give permission for access. We were like a dog at a bone!! My doctor said it was our persistence that made it happen as soon as it did. I was the first at my hospital to be granted approval, now there are quiet a few more. We blazed a trail! Unfortunately there are still some hospitals in Australia who are still not permitting the NPP, because of inhumane legal red tape. A fact that makes me furious! But we are working slowly but surely to try and change this. I will advocate persistently for Kalydeco to be available in Australia to all G551D patients, until that day we just have to keep spreading the word and taking action where we can. There is a Face Book group, 'Kalydeco for Australians' https://www.facebook.com/groups/343431685698805/. Please do join an support our campaign! It'll be heating up next year when it go's before the PBAC board, we'll need as many people's support as possible!

My doctor came out to meet us at the hospital cafe, beaming, holding 3 boxes of life changing cargo. Two little blue pills a day. My mind boggles at such a small thing could change my life. I started feeling the difference within hours. My troubles were really melting like lemon drops...

Sunday, 4 November 2012

R.I.P

"Everything reminds me of her, there isn't a day that go's by where I don't think of her. One day she didn't feel well, the next day she was... gone"
~Meet Joe Black~
No further can I go without acknowledging the brave souls who have tragically gone before us to this devastating disease.
October 2010 was the month I had my last baby, Sebastian. Little did I know on the other side of the world, my dear friend and only person I knew with CF began to feel unwell.
Katie and I met through mutual friends when we were 20, nothing to do with CF, so it was a refreshing start to our friendship. She was always happy, positive very funny and determined to live a life full, not letting CF get her down at all. She's my hero, we completely understood each other. I felt as long as she was alright, I would be too...
Katie had a transplant new years eve 7 years before. Everything had gone beautifully well up to this point. She travelled the world, had a stellar career as a nurse and was engaged to the man of her dreams.
She was diagnosed with cancer early 2011. It was a side effect of the anti-rejection drugs. Had it been caught earlier, who knows? She flew back to Melbourne to be surrounded by her dear family and friends while she battled the cancer. Fought so hard right till the end, but tragically lost her battle last September. She was 31, 3 weeks younger than me.
My heart broke, I cannot speak about her without breaking down privately. Everything dose remind me of her and that she is gone. My world was turned upside down, my rock was gone.
How could I go on?!.. I found out that Kalydeco existed one month before she passed away, it literally was the only thing that kept my hope alive for my life during those dark days.
There are countless stories like Katie's repeated around the globe, that break the hearts of their loved ones. If this is your story too, I am so very sorry for your loss. We must find a way to live on without them and Honor our dearly departed. It's so hard. I will try my best for my family and for Katie's sake, I know that's what she would have wanted. I hope we will be together again in Heaven, always in my prayers.
but I miss her...

May the Souls of the Faithful departed though the mercy of God rest in Peace. Amen







Saturday, 3 November 2012

Genetic Jungle

Hands up, who's not really scientific?... ME! Although I comprehend it fine, science has never been my strongest interest. By life's course I have been thrown in the deep end of one  l o n g  science lesson! Sometimes it's like an outer body experience,"Wow! Is my brain actually absorbing this right now?", I'm certainly not naturally that way inclined!
KALYDECO (For none scientific people) is a light blue tablet that actually makes you feel better!
For all the science buffs out there (and I really do appreciate your aptitude!), I'll have to point you in the direction of my friend Genevieve  http://magicbluepill.wordpress.com/cystic-fibrosis-and-kalydecowho has an incredible knowledge of all things CF and Kalydeco! She explains everything for us non-science people in an easy to understand fashion. Thanks Gen, I don't know how you do it!!

Here are some basic facts about Kalydeco:
* It corrects CFTR function
* People need to have at least one copy of G551D for it to work best
* Two pills a day
* It improves lung function
* It improves digestion
* It's not yet on Australian government PBS, but that process will start next year
* Vertex (drug company) are working on and trialing new drugs as we speak for other CF mutations (so relatively speaking, it's not far off!)
* There is a Vertex compassionate program avalible in Australia for G551D patients who have FEV below 40% or who also have other serious health issues. It's called the 'Named Patient Program'. If this applys to you, Please ask your clinic about it! If you don't know your CF gene mutation PLEASE get tested. There are so many meds in the pipeline, it's vital you know what will help you. Keep your fingers on the pulse!

Personal progress: My mucus production has dropped by at least 95% and I hardly cough anymore, no more coughing fits!! My FEV1 or Lung Function was 40% when I began taking Kalydeco 6 months ago  (briefly peaked to 65% but due to asthma droped.. I'll explain later) now it's sitting on 54% !! This was an impossibility before Kalydeco. I was advised by my doctor that a lung transplant was the next step, within a couple of years (not anymore!). The other incredible change is my weight. I am now absorbing my food and have a normal (to big) appetite, almost no enzymes (only if I have a heavy meal at night I have a couple). Before Kalydeco, I was never hungry and only ate what I could tolerate, otherwise I'd have a coughing fit and throw up. I was 41kg and now I have a perfect BMI and weigh 53.2kg!! Colds and Flu came and went this winter without an admission or IV's. I only have taken Cipro (antibiotic) once since starting K. I sleep, eat and have energy to do normal everyday things. I'm still in shock!! Words cannot described how much better I feel and I'm getting stronger as time go's by, as opposed to getting weaker as I was before Kalydeco.
Save the best scientific evidence for last! The Sweat test: This is the test that determines a CF diagnoses. You get a number according to how much sodium chloride level is in your sweat. A normal persons score is under 30. A person with CF is 60 and above (in between in considered boarder line). Mine was 86 before Kalydeco... now it's 46!!
Only in my dreams did I think this could happen. xo





Friday, 2 November 2012

New Girl on The Blog...

How do you do! My name is Faye, I'm 32, married to the Man of my dreams Benjamin for 8 and a bit years, and we have four beautiful (healthy) boys together. They are my world, My Boys Brigade!

"Whatever does 'CF Mudda' mean?" I here you say! Well please do let me explain; I have a degenerative disease called Cystic Fibrosis. I have created this blog to share my journey with you in a hope it raises some awareness about CF. You don't have to be a mother to be a MUDDA! It's a state of mind. This name is a homage to all of those to continue to fight the good fight, who breathe as much as they can and who never NEVER give up! It's a tough school, but we can handle it. Cystic Fibrosis effects all organs of the body, but most particularly the lungs and digestive system. The average life expectancy for people with CF is around 40.  CF patients need to take a barrage of medicines to stay healthy, as well as loads of physiotherapy for our lungs, which clog up with excessive mucus, causing a chronic cough. Our lives have revolved around hospitals and chest infections and ultimatly we need to have a double lung transplant to live...
However, I don't wish to dwell on the trials so much as the New HOPE that comes in the form of two little blue pills a day, KALYDECO Kalydeco.com. This is an orphan drug (meaning the first of it's kind) that address the underlying cause of Cystic Fibrosis. It's equivalent to insulin for diabetes. It has transformed my life, our lives! In this blog I will share my Revolutionary journey. The ups, the downs ... it's pioneering territory so who knows what tomorrow will bring? But I'm sure glad I've lived to see this day!!
There is so much to cover and I'm excited to begin this blog! I hope you will join me as we move towards a better brighter future for Cystic Fibrosis.
So till next time I'll leave you with the sounds of a great songstress, Tracy Chapman. 'Talkin' bout a Revolution' ... Cystic Fibrosis as we know it is changing, Finally the Tables ARE starting to turn!!! There is so much Hope to be had.... xox