Tuesday, 26 February 2013

Working with (around) a CF Appetite (or lack thereof)

A continual theme I hear parents of a child with CF say is "my child won't eat" or "they don't like it", it's tempting to abandon whatever the quest was or resort to undesirable food choices, i.e. hot chips. Partically out of guilt, feeling sorry for ones suffering child, and also parental exhaustion. I hold no judgement towards others, it's a really tough challenge, no doubt about it. Sometime you have to pick your battles, it's all trial and error. In this post I would like to give you an insight to a child's experience in hindsight, things I have observed only in retrospect with my now adult mind can only comprehend certain contributors to this 'no appitite' factor. Perhaps a little encouragement to persevere...

"Patience is bitter, but the fruit is sweet" ~ Jean-Jaques Rousseau ~

I know what it feels like to have sub zero appetite, I mean 'nada'! The time in my 20's when I was hospitalised for 6 weeks due to a rib fracture I had to be on loads of medications; IV's, enzymes, fungus pills, acid reflux tabs, pain killers, oral antibiotics, nebbs, nausea tabs. I mean it makes you totally drugged up in feeling. I know many others have diabetes medications, over night feeds, plus other meds. no wonder I can only imagine what the pancreas, spleen, stomach, liver and kidneys are having to process. It would be interesting g if a 'normal' person could eat after that, let alone a person with impaired digestion! Coupled with excessive mucus and stomach aches after eating. It's a recipe for: "I'm NOT HUNGRY!".

The vicious cycle needs to be interrupted some how, that's the difficult part. As a child when I had a healthy lifestyle, active, and healthy foods, I had a HUGE appetite. My sister still remembers me going back for seconds. When I broke this healthy living pattern I got sick and lost my appetite. I believe this is the key to encouraging appetite. Lot's of physical outdoor activities. I was not allowed to watch TV much, maybe once a week if I'm lucky I was allowed to watch an old classic, 'Laurel and Hardy', Jerry Lewis, musicals, Shirley Temple movies. Never on a daily basis, our TV was packed away in a cupboard to prevent casual watching. I read loads of books this way too! The sedentary lifestyle TV and computer games are breeding are dangerous lifestyle, particularly to people with chronic illness. Just look at the obesity problem, multimedia is contributing to this on a massive (pardon the pun!) scale. Of course children now days may say "it's boring", that's also a product of entertainment, it makes life seem dull. I now minimise it for my boys too. I want them to have a healthy, thoughtful, creative, intelligent, upbringing. Principal axis, determining their happiness and changing their future. Don't get me wrong, I love a good movie!! I just believe they should be kept in their rightful place. A great way to objectively judge it for yourself is to think if by watching/playing this certain show/computer game is preventing my child outdoor physical activity, is that a good time to be doing it? Maybe not. Outdoor physical activity promotes a healthy appetite.

My early childhood heroine: Nadia Comăneci 

Food (you know I had to mention it!) what I eat it critical for my appetite. Like multimedia, fast foods, high trans fatty, processed, highly flavoured food choices are addictive, so when you stop eating it you get withdraws, cravings, making a fresh start very difficult for some. If I eat trans fat, processed food regularly I loose my hunger rapidly, even still now I'm on Kalydeco. It clogs me up. I don't just mean that literally, but just takes my body so much more effort to function. When my intestines get loaded with hard to digest food, that's it. I get a very congested chest, my mucus levels go up in my system and my bathroom visits are no good, a combination that renders me feeling very poorly and looking more pale than I naturally am!! I get weak, no energy, don't want to do physical activities, just want to eat fast food because it's 'yummy', then I get sick, chest infections, you know the routine after that! I have over the years noticed that it's all connected, it's not separate issues. One effects the other. Even worse determine the lifestyle you lead. Constant increase medication, hospital stays etc. By making a concerted effort to avoid this cycle with nutrition and activity, I can attest to the fact it really does make a difference!!

Changing a child's routine is nothing short of traumatic in some cases (for parent and child!). The earlier you start them on a healthy way of living the better! For others who know their in for tantrums, food strikes and an emotionally stressful period, I do offer sympathy!! But like Super Nanny shows parents on her show, it takes time, perseverance and patience. Lot's of positive reward and reinforcements, sometimes a little tough love, but know it is possible to make a change for the better. I can tell you sometimes I hated (as kids dosome of the food that was served to me as a child, but I don't regret or resent being made to eat it. The opposite is true, I appreciate my mothers persistence, strength and courage to teach me the tools for life that I so depend on now. It was very very good for me. That's partly what motivated me to learn how to cook, to make it taste better!  Step by step.


Creating healthy hero's can be so inspiring for children. Mine was Romanian gymnast Nadia Comăneci and anyone who sang and danced! For our sons Robin hood, Knights and Jamie Oliver! Our boys enjoy to watching his cooking shows, and any other healthy hero's (though we don't call them that, they're just subtly esteemed). This healthy way of living is normal to our boys now, as it was for me.

Experimentation key, make food fun and an exciting adventure. My boys were reticent to curry, they went from Mango chicken (very mild) and now they ALL eat vindaloos!! (with lots of pickles and yogurt). Being a bit of a foodie myself , I collect recipe books. I love to pour through them, and our boys love reading them too, because I get so enthusiastic about different cuisines. We have a rule in our house: You must try everything at least once!! You know, it's fun, our boys almost have a competition who can eat the hottest/worst tasting things! Typical boys!! As a result they eat every cuisine I serve them, their favourite is Mexican, Indian, Sushi and of course English fare. It's taken effort and encouragement, but it pays off in the long run. Really important example to our boys that Mummy and Daddy eat healthy, I don't serve anything I wouldn't eat too... except sardines they relish them, not me though

Sebastian (aged 2) eating and loving Sushi I made for dinner (often)

If your having troubles trying to improve diets, adding new and healthy foods into your routines, don't loose heart!! Persevere and you be rewarded in the long run. It may no cure the lack of appetite completely, but hopefully improve it significantly and general well being. Even though children may no have a taste for something initially, with patience and persistence it's possible to develop a taste for good habits and improving the quality of life and the whole family's at the same time. xo

Saturday, 23 February 2013


What's Supp??
So your walking around the health store checking out vitamins, powders, liquids, shakes, Carob (don't bother *ha ha), omegas, etc. etc. etc. Everything has a benefit and you start to think, "wow, I really need this.. and this... and that". It's can be very overwhelming for the beginner or for anyone who doesn't know exactly what they're looking for. That's just the health store, wait till you go online! (which generally is the most economical way of buying supplements, unless the particular shop has a sale or clearance bin. Moral of the story: Shop around!!)

Relax. It's not that difficult. Much like a diet, you have your staples all year round; i.e. potatoes. Then there are seasonal foods, stone fruits, grapes, tomatoes, cabbage, asparagus etc. This gives you an idea of supplementation. The staples should be identified to suite you ailment (mine being CF) to restore the bodies balance, that your particular condition renders you deficient in or may need a little boost in certain areas. The following are the supplements I would have used if any of my children had been diagnosed with CF.

 Here are my top staple supplements for CF

1. Selenium Patients with CF are deficient in Selenium, by taking it helps promote glutathione production and protects DNA from free radical damage, reduces inflammation. I took it throughout my pregnancies to prevent CF in my own children. 

2. Zinc is an appetite stimulant, immune booster and is very beneficial for malnourishment helps with growth and healing.

3. Vitamin A. . Vitamin A thins mucus and reduces respiratory infections. As a child I was given 25,000IU emulsified A. Emulsified vitamin A is, as the name says it, already emulsified. In comparison with other precursors of the vitamin, emulsified vitamin A skips all the process beta carotene has to go through during digestion, taking a shorter time to get absorbed by the intestinal walls into the liver where it is distributed in forms ready for use to the parts of the body that need it. The Vitamin A I take now is from Fish liver oil, softgels, 25,000IU

4. Vitamin E is a very powerful antioxidant, protects DNA from free radical damage, and has been shown to protect lung tissue from damage. I take Vitamin E oil softgels.

5. Essential Fatty acids: Flax Seed Oil. Is essential for managing my CF. "The red blood cells in the lungs give up carbon dioxide and take on oxygen. They are then transported to the cell site via the blood vessels, where, they release their oxygen into the plasma. This released oxygen is "attracted" to the cells by the "resonance" of the pi-electron" oxidation-enhancing fatty acids. Otherwise, oxygen cannot work its way into the cell. "Electron rich fatty acids" play the decisive role in "respiratory enzymes, which are the basis of cell oxidation...". ~ Ed McCabe (p85, "Oxygen Therapies" ~
Cod Liver Oil in combination with flax seed oil, covers all my essential fatty acids needs. Cod liver oil contains reliably good levels of Vits D, A & E, DHA, EPA & ALA. Good for strong bones, brain function, eyes, nerves and digestion. Fun Fact: HM The Queen ('HRH Princess Elizabeth' at the time) took a weekly dose cod liver oil when expecting HRH Prince Charles in 1947 and subsequently with all her other Royal babies. Fit for a Queen!

6. Lugol's Iodine Antibacterial. Metabolism regulator. Another great food source iodine is kelp and seaweed, both of which I had in copious amounts in my diet as a child.

7. Probiotics: Lactobacillus rhamnosus gg strain promotes healthy digestive function. With the constant medications that people with CF need to take, in particular antibiotics, our gut flora is continually wiped out. This is bad news for general well being!! You need to have the good bacteria to correct the balance. Studies have shown LGG strain of good lactobac promote better lung health in cystic fibrosis too, reducing infections, improves lung function, reduces intestinal inflamation. Probiotics are seemingly silent but vital part of managing overall well being. You may not think its doing much, but in the long run your body will thank you!!

8. Chlorella  is nothing short of an amazing super supp! I chose it over spirulina simply because studies have shown it to be far superior (however you must be sure the chlorella product you chose has the chlorella cell wall broken down, this makes it 80% times more digestible). Contains naturally occurring: Calcium, CGF (phytonutrient), beta-carotene, biotin, carotenoids, chlorophyll, Essential fatty acids (EFAs), folic acid, inositol, iodine, iron, magnesium, PABA, pantotheneic acid, phosphorous, potassium, proteins, RNA/DNA, vitamins A, C, B1, B2, B2, B3, B5, B6 and B12, E and K, zinc. It detoxes heavy metals and radiation (a huge issue for CF with all the x-rays we undergo), anti-inflamatory, increases oxygenation and boosts energy. My vitamin D levels were the highest my clinic has ever seen in a CF patient, well within the normal range after approximately 8-12 weeks of regular chlorella intake. This super supplement makes taking many others obsolete. By clicking the Chlorella link you can compare your supplements to the the analysis value chart. No need to double up!

9. Colostrum stimulates your own Stem Cell production. I only discovered colostrum in the '90's and didn't realise the stem cell connection, if I had I would have taken it routinely. As I've written previously adult stem cells hold much promise for healing lung disease. By taking colostrum it helps to generate your own cells into action/production so they can start healing any organ degeneration around the body. It's a wonderful preventative for all degenerative diseases, one that I wish I had taken though out my lifetime!

10. NAC (N-acetyl cysteine) Is an essential amino acid and critical antioxidant for CF patients, it helps the body to produce L-Glutathione. I have only recently learnt about my own second gene mutation (G1123R; it effects the amino acid function) then figured how even more vital NAC is to my particular gene mutation. I have just started taking it and hope to see some long term improvements (I wish we knew about this when I was a child!!). One of the most important functions of NAC is it's ability to reduce inflammation, which is a chronic problem in CF and widely considered the root of all disease. Also increases immunity, lowers cholesterol, prevents liver damage. There has also been studies to show inhaling NAC helps fight pneumonia, asthma and bronchitis

11. L-Glutathione Is brilliant for anyone with CF, it helps to protect you from lung damage, stimulates white blood cells, breaks up mucus and has natural antibiotic properties. Glutathione has been a recent revaluation (like NAC) to me. I have started theranaturals.com inhaled reduced L-glutathione (buffered by bicarb). L-glutathione is a tripeptide (means consists of 3 amino acids) it's a linkage (Peptide; short chains of amino acids) I'm really impressed with this inhaled product, the bicarb is very soothing to the airways too (create alkaline environment), pretty well all the CF patients I've contacted about this (who have been using it long term) do not have pseudomonas. Pretty powerful testimony to the power of Glutathione!!

A Visual to see how NAC & Glutathione work together
12. Noni Juice proven to kill pseudomonas and repair lung damage. Very powerful super supp!! Must be careful to chose a good brand, Tahitian Noni is said to be THE best. Most studies have been conducted on Tahitian Noni, I look forward to seeing studies on other Noni's (i.e. Fijian) in the future just to compare, but for now Tahitian looks like the way to go! A few benefits of Noni are immune booster, digestive stimulant, analgesic, anti-tumour, antibacterial, anti-inflammatory.

13. Vitamin B complexes help to maintain energy levels, normalise mood, fight depression. It's maintains the stamina to fight any chronic illness. Particularly B12 and folate helps to keep Iron levels in the body normal. B6 is primarily concerned with protein metabolism (protein is involved with some CF gene mutations function) it's helps immune function and is part of haemoglobin production. B3 (niacin) also helps energy levels. As well as assisting the body to use fats and protein, brilliant for circulation. Basically All B vitamins help general blood condition.

14.Colloidal Minerals great way to get all the trace mineral levels normalised. Very easy for children to take in juice. Again this is one of those supplements the can take the place of many pills .i.e. Zinc, Iodine, selenium. and others. You can check other supplement levels and see if they compare. It can simplify things, which is good for busy parents and fussy children! Minerals assist in the absorption of vitamins and food.

15. Curcumin for all the reasons I explained on my previous Turmeric post

Obviously this is a brief overview of each supp, there are many more benefits to each one that are amazing. Please click the links (names of the supp) to learn more if your interested. Note that ALL the supplements I take are derived from natural sources, no synthetic derivatives, artificial additives or nasty bits. I don't take Abdeck (prescribed at the CF clinic) for this reason. Sometimes artificial vitamins are unavoidable, for instance when I was breastfeeding for a year I got anaemic, my iron levels were quite low, so I took a pharmacy iron supplement prescribed to me to boost the levels very quickly. That's what I keep drugs and synthetic supplements for: serious situations, NOT MAINTENANCE. I also find that liquid form of any supplement is easier for me to absorb, so where possible I try to do that too, but always ensuring the quality of the product.  I hope I haven't forgotten something important, but will cover it a latter date if needs be. All of the above have been concluded by trial and error, research, many consults with holistic doctors over my whole lifetime. None of these suggestions have come from any of the CF clinics I have attended. A fact which makes me angry, beyond that, disappointed and outraged by this gross oversight. I personally believe more focus should be on supportive, preventive medicine than constantly prescribing drugs as a perpetual band aid for symptoms. Look at the cause!!!  Try and swing the balance of your body in your favour. My goal has always been to minimise my dependence on drugs and increase my health, longevity and the quality of life.

Always remember nothing replaces a naturally healthy diet. Supplements are just that, there to fill in the gaps. By eating whole foods and preferably organic fruit and vegetables, the need for lots of supplements should reduce. A little regularly should go a l o n g way! I encourage you to educate yourself and even better find yourself a holistic doctor who can guide you through the plethora of natural medicines to suite you individual needs. I never lose sight of the reason I do all this for, the ones I love. So we can be happy, relaxed and have a good life together for as long as possible...

I must confess before I loved my Love, Benjamin, and had our dearest sons, I had begun to lose hope. Everything seemed too difficult. I lost motivation and care for the future, I became reckless. They brought new hope, new joy and life to my life. Gave me a reason to try. I say this only to share what keeps me going, why I'm always open to learning and continue to go beyond the barriers of CF. Now, with my boys by my side (Benny included!), nothing is impossible... xo

Friday, 15 February 2013

What if I had a Child with CF?

"The only source of knowledge is experience"
 ~ Albert Einstein ~

Baby Charles

A question that often gets asked of me is "what would you have done if you had had a child with CF?". Fair question! Yes, I had a very clear plan in place if one of our children were diagnosed with CF. None of them have CF, but I will break down my own approach for you to look at.

First of all, you can interpret my having children anyway you like, but one things for sure, it's a testimony to the fact that I truly believe I have had a good life! I was not afraid to have children or for my children because from my experience life is still good, with or with out CF. We have never had gene/carrier testing done for Ben and the first 3 pregnancies were managed at a non-CF country hospital. It was as normal as could be! I was treated like any other expectant mother, mid-wives delivered them and it all went smoothly, my labours all averaged 45 minutes of intense labour. No CF problems at all, I never did lung function during the pregnancies, but was very comfortable with a check up and going by my own instincts. I never needed oxygen or wheel chairs, only in the last few months I slept on two pillows because of acid reflux (which I've read is a common problem for a lot of expectant ladies, CF or not) With my fourth baby; (after attempting to turn him 3 times) he was breech, we decided to have the pregnancy managed at the bigger hospital where my CF is also managed from, just in case I needed a c-section. Thank goodness I didn't need one and thank goodness for epidurals! Was the best delivery EVER!! Again it all went very very well (better than expected actually considering I had fractured a rib in a previous accident). I guess what I'm trying to say is I don't fear a whole lot about CF because I have experienced a whole lot! I am very comfortable in my own body and pretty good at knowing my limits.

What would I do? I would treat an unwell child very similar to the way I have my well sons. I feed them healthy choices and create good habits for life. I breast fed for as long as I could manage, one year with my first baby then got less with each one. I found an Organic Formula, as healthy as I could find at the time. Don't get me started on how bad some formula's are out there, similar to sustagen type drinks, loaded with too many bad ingredients. Some are just not healthy for a tiny baby, well or not! I did feel badly about this, but breast feeding long term took it out of me, I felt instantly better once I stoped feeding. I alternated the formula with freshly juiced carrots and apples.

"One should eat to live, not live to eat" ~ Moliere ~

Once solids start, that's when the real work begins. This would be a crucial part of my management of any child of mine with CF. I view what I eat as important as medicine. This is the foundation of your body, your cells your life! If you eat highly processed, preserved, packaged, flavoured, fried, lifeless "food", what do you expect? With CF our digestion is impaired, so eating all the recommend high fat, protein, sugar and refined carbohydrates is lethal to be honest. That's why they prescribe tones of enzymes, to digest the indigestible! We are not machines that need petrol, we have living bodies that only survive with living foods. I am not surprised by the high percentage CF patients developing diabetes, cancer & no natural enzyme function left (to name a few). With all the drugs, coupled with a the "CF diet", there can be no other long term outcome.

What would I feed a CF Child of mine? Fresh live nutrient rich foods; vegetables, fruit, wholefoods, whole organic dairy and meats. Fresh juices!! Zero junk food or rubbish drinks. It's not a treat to give a sick child bad food! They may feel emotionally warm and fuzzy at the time, but their body won't feel that way in the long run. Don't fall into the mistake of just thinking "oh that's the CF causing ALL the problems". It does matter what you eat!! It does make a difference!! What I eat makes or breaks me, I have experienced this first hand. I rebelled, I ate average CF diet in my early/mid teens. Whenever I err from a really good diet (i.e. Christmas) I become unwell not too long after (hence my recent down turn, I over did foods that are not on my regular diet. Too much sugar and refined foods). Sometimes it's permissible, if you bounce back, but (particularly as you get older) it can cause a lot of trouble, like when I got really ill at 15 when I was recommend to have a heart, liver, double lung transplant. Scared me straight! I turned my life around and rebuilt my body piece by piece. With nutrition and detoxing.

Me aged 18, after doing natural therapies full time for two years

This has been my journey, my experience. This is not suggesting I have no CF problems by eating a diet like this, but that by eating better the quality of life my life is improved on massively. I still have antibiotics and need medical assistance more than a healthy person, but I aim to keep it too a minimum. My only regret in life was that I stupidly dropped my bundle (health) in my teens, if I had stayed on the diet/lifestyle I had as a child, I would have prevented a lot of the lung damage I sustain today. I stayed out of hospital as a child for 13 years on a healthy diet coupled with an active lifestyle. Don't discount the power you have to make a better life for yourself. Having CF is a challenge, we must rise to meet it, sometimes it seems to require more than we think we have to give, but you'll be surprised how much untapped capacity you have to fight back... food for thought. 

Next time I will go through the different basic natural supplements that have helped me as a child that I would have used if any of my children had CF. 

I hold the same opinion about the CF/Hospital diet as Mr Jamie Oliver does about Britain's school dinners, for work which he was awarded an OBE by HM The Queen. The hospital food system needs to be revolutionised!! I strongly believe hospital dietitians across the board need to re look at what they are suggesting to parents and patients alike.

Our Children Deserve Better!!! 


Friday, 8 February 2013

A Page on Phage

A Bacteriophage

About 2 years ago I became seriously allergic to all IV (intravenous) antibiotics. Until then the only allergy to them was gentimycin when I was 16 (my whole face and brain swelled up, difficulty breathing). It started with itchy palms, then feet, then knee, elbows, torso... everywhere itchy. Then welts start appearing all over. A massive headache and my lungs feel like a bee stung them, blown up, hardly can draw breath... awful, but also dangerous because this level of allergies can cause a catastrophic anaphylactic shock. From then on I was given an adrenaline epi-pen when on antis.

Another common CF issue as you get older is when your pseudomonas get resistant to antibiotic, meaning the drug doesn't kill/effect it anymore because the little bugger mutated! This is the case for me now too. The pseudomonas bacteria is resistant to most antibiotics.

When I realised this was starting to happen my first thought was... (actually I won't say my first thought!) My second thought was, 'Oh, no. What am I going to do? It's going to be a quick slide down the transplant route'. Once Kalydeco came along it greatly reduced my pseudo levels, simply being able to clear your lungs of the thick mucus reduces the pseudo from setting up shop. However, my lungs being damaged I have not been able to completely clear them of pseudomonas. All the natural things I do help, without a doubt and I'm so glad I have them to help contain it and the only inhaled anti I can tolerate Colistin and, helps too. Ciprofloxacin (oral pill) helps in times like now when I'm doing extra to avoid IV's, but my pseudo is resistant to cipro, it only takes the edge off of it....

Then one day another lovely person on a CF Facebook group mentioned the Georgian Phage centre in passing. I messaged her to find out more. I'd never heard of Phages before. I went on to look it up and then read all about Phages, it' was like music to my ears!!!!

Whats a BacterioPhage?

A Bacteriophage (aka: Phage) is a virus that infects a bacteria then go's on to destroy it. These virus are found in water, oceans, rivers and sewage! Where ever bacteria is in these waters so too are phage virus found. Reports of healing waters, like the Ganges in India, since acient times have been know to cure leprosy and cholera. In 1915 British Bacteriologist Frederick Twort discovered the waters contained a virus parasitic to bacteria. Here's a visual animation, like your looking under a microscope of a Phage infecting a bacteria:

I have been in contact with the Phage Therapy Centre in Tbilisi. Polish Phage Center in Wroclaw, Poland. As of yesterday Special Phage Services in Sydney, Australia. I am so excited by what I learnt!! 

1. They are now doing human Phage trials at The Brompton UK (on CF bugs).
2. It is very effective on: pseudomonas, cepacia and other CF related bugs.
3. They are going to do human trials (CF) in Australia in the near future

For someone like me who struggles with antibiotic and resistant pseudomonas or any other drug resistant superbugs (i.e. MRSA) this is such brilliant news!!!  

Here are a few links to read some more detailed and technical information all about Phages:





A common concern is 'will the virus make another problem for my body to deal with, potentially bigger than bacteria I already have?'. NO. These virus' are very safe, they only live off and in one thing: the bacteria it's made for. Once their food supply is gone (the pseudomonas) they disappear too. I urge you to educate yourself on this amazing wonderful science that the western worlds is just catching up to, I for one cannot wait!! I'm firmly on this Phage journey now, I will share with you my experiences when they happen...

Wednesday, 6 February 2013

CF Clinic Memo

Had clinic today (5 hours of my life I won't get back, lot's of waiting) the verdict is I will continue doing what I'm doing, but if by Monday I don't really pick up, I will be booked in for desensitisation mid-week if needs be...

Sputum sample was taken for culture. FEV down to 49% (was 55) but with regular Bronchitol, physio we have no worries it will go back up. My doctor listened to my chest, was better than I expected, brilliant news is the bases of my lungs are clear! (my GP listened last week and they were not great). Shifting gears and putting in the extra effort has paid off in that respect, just have to keep it up for a couple of weeks intensely. We will do a CT scan of my lungs next clinic, I've not had any ex rays or scans since starting Kalydeco last may, that will be very interesting to see. I wonder if there will be any improvement in my lung condition?

Weighing in on the bigger issues of life: 55.5 kilos!! I was 56 a few days ago (I cut out curry every night) lost 500 grams yay! *ha ha. Yes, ironically in the twist of my Kalydeco life weight keeps pileling on. About a month ago I cut out bread in an attempt to stabilise it. My BMI ideal is 50kg -53kg. 55kg was reserve. 56kg is confronting! As I've said previously if my 'extra-ness' was distributed like Miss Monroe's then I wouldn't mind a bit, but it's not. I'm petite (SHORT) you get the picture! This weighty issue blows my mind, I've never worried about putting weight ON in my life?! Nice problem to have though after years of being very underweight...

So it's a tentative dodge of the IV bullet... I hope I can continue to improve. Very relieved and happy about it, for now. Will keep putting in all the effort hope it will keep me home... and hopefully will reach my goal since starting Kalydeco:


Thank you one and all for your encouraging messages on my facebook, really apreciate your support. Knowing your there when I need a kind word lifts me up... Here's hoping it's just a storm in a tea cup! xo

To I.V or not to I.V, That is the question....

The thing about CF is you can be in cruise control for quite a while, then a series of unexpected happening can tip you scales, much easier than healthy people. This is what's happening to me this week, it's the end of 6 weeks summer holidays looking after the boys, which has been lovely, but coupled with a heat waves, bushfire smoke and a month of no antibiotic's (being so busy I got a little slack with my Bronchitol), coupled with that extra special time of the month (ladies you know what I'm talking about!) well my body started to get tired. No matter what's happening, never lose your sense of humour!

Very funny man, Dylan Moran talking about his friends who have no kids. Hilarious!

So I thought I'd take the opportunity to share with you what it's like for someone like myself who prefers 'naturelle que possible'. What do I do when my CF needs more attention than normal? First, I had a sputum test cultured as soon as the colour changed and I felt more production. The growth is moderate, fortunately it's been caught before it got out of control. 

Medication wise, I started on Colistin inhaled antibiotic as soon as I started feeling poorly, but it wasn't improving at a satisfactory rate. So added Ciprofloxicin dispite the pseudo being 'resistant', I did this a few days ago and have felt the improvement within a day. Hypertonic saline 2-3 times a day, double Pulmozyme, Bronchitol, Ventolin & atrovent 3 times a day. 

Physiotherapy: I pulled out The Vest, Zen Chi 2 times a day. pep, percussion's, trampolining. I love it, not just for kids! *ha ha, neighbours laugh at me jumping out there, but they should give it a go to be honest, having fun and keeps you fit! (before Kalydeco I couldn't trampoline at all, the impact would hurt my lungs, not anymore!) I dedicate a lot of hours a day to all the above during periods like this.

Naturally: I consolidate my energy. I do what I can manage, doing all the above tires me out a  lot, so doing all my natural treatments is more difficult to fit in whilst looking after me and children. I increase my juices to at least two litres a day. I can't tolerate harsh thing on my tummy due to cipro, so haritaki is temporarily on the wayside. I increase my LGG probiotic, 8 Flax seed oil capsules, take Iron + Vit C. Making colostrum, whey powder yogurt drinks. Cucumin reduced to two capsules a day. 1 teaspoon of bicarbonate soda a day. I try to alkaline my body as much as possible. Cut out meat. Increase vegetables. Take Colloidal silver. Inhaled glutathione. Drink extra filtered water.

I have a CF clinic appointment tomorrow, so we will see what the next step is. I hope to continue to improve, schools back so I have more time to concentrate on getting well... I loathe IV antibiotics (doesn't everyone!!) especially because I am allergic to ALL of them. They desensitise me to them and I have to be attached to a 24 hour drip to keep the levels right. The desensitisation stops welts, but I still have a very druggie achy feeling, particularly in my head. This is the second time since starting Kalydeco I've been close to doing IV antibiotic, but with a little bit more effort I hope to avoid it again, but if I have to do a course I look forward to a clean slate and will focus on detoxing the drugs from my system. I'm curious to see if I could become pseudo free now I'm on Kalydeco! 

One things for sure it's time like these that Kalydeco shines. I would have been admitted last week if it weren't for these two little blue pills... it's given me a chance to fight back properly. It's brilliant! Let's see what tomorrow brings...

Friday, 1 February 2013

Kalydeco Lament for Ireland

Reluctantly I write about this subject, it is however the underlying truth that we hide from the world, deny only to cope, protect our loved ones from, but it is the underlying reality that is Cystic Fibrosis. I write it for the removed outsiders who are pulling strings like Gepetto, with little experience or insight into the life we have to lead, but we are not puppets made of wood, we are people for God's sake! Not a statistic or a monetary figure.

"A conscience is that still small voice that people won't listen to. That's just the trouble with the world today..." `Jiminy Criket Pinocchio

There are CF sufferers all around the world who have to wake up day in day out and do gruelling routine of treatments, from nebulizers to physio therapy and beyond. The older you get with this disease the harder you need to work at keeping your body going. The older you get the harder it gets to work hard! If you want a day off too bad, it's not going to happen. You may spend you whole day clearing your chest one day, when you wake up the next day you will choke on the mucus because you've filled up again. We have no appetite. Our digestion is poorly resulting in crippling stomach aches and malnutrition because we can't absorb much of the little food we manage eat. Endless pills, hospital admissions, needles, tests. Coughing fits. Many go on to develop secondary illnesses, like diabetes or cancer. We're expected to clear our chests, eat more than the average person and then do loads of exercise all the while feeling exhausted and in constant pain... we're not lazy, we're exhausted. After all this we then face having adouble lung transplant to save our lives. This is just a little of what we go through.

Uncomfortable? Yes, so are all the CF patients who are waiting for relief, beyond uncomfortable! This is the practical reality of those of us living with CF. This was my reality for 31 years until Kalydeco. Thankfully Scotland overturned their decision about  Kalydeco and approved access for G551D patient living there, but I was prompted to reflect upon this dark side of CF because of the rejection of Bronchitol in the USA and the continual refusal of Kalydeco for the Irish. Both these new medicines are a massive, a long awaited break through. Bronchitol will help the airways of all CF patients, no matter what the CFTR mutation. Kalydeco is nothing short of life saving for those who carry the G551D CFTR mutation.

This Irish denial is an irony that it certainly intolerable! The Irish make up most of the G551D CF patients, 11% of CF patients in Ireland carry G551D, "the Celtic gene"!! Kalydeco is their life saving drug!!!

Mentally and emotionally it' humiliating, isolating, sad, fearful... each day living with the cloud over our head is  making a scar on our souls, hearts and minds. To needlessly suffer this is truly cruel.

There is little doubt my own G551D comes from the Emerald Island, my maternal Grandfather's parents were both Irish. I'm not sure I can convey accurately to you what I'm about to describe, however I need to try... We have accepted this condition because there was nothing that could correct it, medications in the past just managed symptoms, but Kalydeco is different, it's as vital as insulin is for a diabetic, it's a fundamental treatment for CF. The frustration, agony of knowing there is something in the world that can help you or your child, but you cannot access it due to legalities, politics, capitalism: MONEY...  It's gut wrenching painful, heartbreaking. I know I waited too, but not as nearly long as others. My heart is always with all those suffering this brutal disease with no relief at this moment. "There but for the Grace of God go I" ....

Have mercy on these dear people, who by no fault of they're own suffer endless pains of CF, there is something that can release them from this languishing existence: Kalydeco. It is nothing short of inhumane torture of the innocent.

Please allow access to Kalydeco in Ireland!!!!!