Thursday, 6 June 2013

A year on Kalydeco. Before & After (Photos & Scans included!!)



"Two roads diverged in a wood, and I... I took the one less traveled by, and that has made all the difference." ~ Robert Frost ~

May 22 2012 my life, no, OUR lives changed..... 

First dose of Klaydeco

Filled with a life time of fears, the apprehension I felt upon receiving Kalydeco after a 6 month long battle to gain access was overwhelming. I was numb. I guess I didn't wish to be disappointed. The question spun in my head, 'Was it a little too late for me?'. Within hours my question was answered. 'No', it's never to late! 

My lungs felt hydrated, wet, soothed. I was not even aware of how uncomfortable they had become. So inflamed. Raw. Then the coughing started. But not the old type of 'stuck' coughing, but the type that gets things up & out!!! What a feeling, the ease & comfort I had never known. Feels like a baby first tasting chocolate, first comes the shock and disbelief of how good it tastes, then the delight! I coughed up a lot that first few days. Yes I had little bleeds, but nothing serious. They happened when hard plugs were dislodge from deep down in my lungs. I was prepared for a dramatic transition after reading many different experiences, but for me I can only describe start Kalydeco as a peaceful, gentle & comfortable in terms of my lungs and digestion. My sinuses was whole another story!!! 

Totally unexpected for me as I had never had sinus issues. Within a couple of days I came down with what I thought was a 'sore throat', but it was very odd. The place of the burning was unusual for me, right at the place where your sinuses meets your throat... anyway, it got worse and worse and WORSE! I thought the worst, "oh no!!! I'm allergic to Kalydeco". Freak out! But the next a.m. I awoke and felt a very hard lump right at that sore point. I decided to suck it down (if I could) not sure if it was my sinuses or something else.... Oh. My. Goodness.!!!! It was like my sinuses gave birth to THE hardest, darkest plug I had ever seen. It was the shape of my sinuses. I had no idea it was there. The inflammation (severe burning) subsided instantly. I thought it was over, but no, this happened on and off for about a month. Better out than in! This was the beginning of my transformation.... 



Phoenix from the Flames

Before & After 
(Yes that's the same dress! I squeezed it back on just to show the difference... good thing it stretches!!)


Big Thank you to my friend Nicole for putting these images together!!! xo

These are my Lungs. Before Kalydeco were overtaken by bronchiectasis, infection and mucus. After less than a year on Klaydeco the bronchiectasis in most of my lungs has healed. Mainly present in the two upper lobes (the white in the 'after' picture is my heart). My lung function was 40% when I began Kalydeco. It is now sitting on 66.7%.




Another incredible improvement to experience once starting Klaydeco was my increased appetite. It was huge! I was hungry for the first time in recent years.. When I went into cafes I actually fancied the food on offer, instead of choosing something I could 'tolerate' I actually enjoyed the taste, smell & experience. This has been a great comfort to me as I have always loved good food, rich food just didn't like me! Before Klaydeco I would try eat foods that I enjoyed, but more often than not it would cause lots of coughing after. I gained on average a kilo a week. I started Kalydeco fluctuating between 37kg to 43kg. I was 41kg when I got Klaydeco. 
  • 6 months of taking Kalydeco: I gained 15kg. I weigh in at 56kg and have remained so (my perfect BMI) this whole time. 
  • Sweat Chloride Test before Kalydeco was 86. 6 months later on Kaydeco: 46!!!

My life on Kalydeco in short is a dream come true. Prayers answered... I have not enough words to convey what it means to me and my family. There are no words... 




Our year in pictures











If I had any advice to others starting Klaydeco or waiting for kalydeco. Stay as healthy as you can. Make healthy choices. Eat well, eat fresh, eat Organic, eat gourmet, but don't eat nasty packet "food". It will only make you sicker in the long run. Hydrate. Juice! Juice for nutrition, enzymes, oxygenation, minerals, vitamins, hydration, energy and healing from the inside out! And supplements really help!!
Grace Kelly always ate her fresh fruit!


In truth my joy is bittersweet; overshadowed by sadness and grief. For the loss of my dearest friend to CF and for those still awaiting their deliverance from this relentless brutal disease that is CF. I am not cured, no doubt, but I can say that if I didn't sustain all the damage from CF over the 31 years of my life without the assistance of Kalydeco, I would feel cured!!! 





It's time....
Australians Need Your Help!!!!

In AUGUST our Government announced the outcome of the JULY PBAC meeting which decided the fate of Kalydeco in Australia.  It was devastating news to the CF community that Kalydeco was INDEFINITELY deferred. As a community we are now trying to raise as much awareness & support for #YesToKalydeco. We are asking people from the bottom of our hearts to PLEASE help us send a message to the Australian Government and Vertex about why kalydeco is so important to CF patients!!! 
No matter where you are from you can sign our petition, every persons input counts!!! Please Click the link below, sign and share to help to make a difference to the future of so many lives... So many families are hoping for #KalydecoForChristmas

 Our Change.org #YesToKalydeco petition LINK:

To support further please like our Facebook #YesToKalydeco Page 



Last but by no means least; THANK YOU to all the hundreds of people who have written and supported what I am doing and making this blog a success for CF awareness! (last count CFMUDDA has had 30,000 views!!) My hope it that it gives you all HOPE and the courage to continue the good fight. I will not rest until CF stands for Cure Found! 


"We are all too young to die"
~ Florence and the Machine ~








































Friday, 24 May 2013

CF Superhero Supplements: Glutathione (GSH)



Ok so Glutathione what is it and why is it good for CF??...

Glutathione is the most powerful antioxidant in the body. It is made inside most cells, not the outside! It is produce by our cells to protect them from free radicals and plays a major roll in maintaining oxidation and anti-oxidation. 
Our bodies are constantly reacting to oxygen when we breath our cells react and produce energy. The product of this process is free radicals. Free radicals, the product of everyday pollutants, attack healthy cells, this cause oxidative damage to cells, genes, DNA, membranes, tissue etc. This is the case for all chronic illnesses and the cause of degeneration. ALL tissue damage and degeneration of disease is linked to glutathione deficiency!!! CF FACT: Studies have confirmed lungs tissue is effected adversely by oxidative stress.

Antioxidants protect our cells from free radical damage! We get these naturally through eating healthy fresh foods. Hence why Juicing is such a powerful help to our health. A few great supplements/antioxidant's that support our health are: Vitamin C, Vitamin E, Beta-carotene (in carrot juice and chlorella), Selenium, Lutein, Lycopene, Coenzyme Q10, Alpha-lipoic acid, Flavonoids. Note: that Vit C, Vit E and Selenium have all been proven to be directly beneficial to CF and that Glutathione is involved the  utilization of ALL these antioxidants in our body!

Whats the big deal about Glutathione???
It's a triple threat!!! A million times more powerful an antioxidant than Vitamin C, Glutathione protects our DNA from free radicals, boosts the immune system and detoxifies the liver big time. Glutathione also has potent antiviral properties. When cellular and blood glutathione levels are significantly increased, the replication of most pathogens are slowed down or stopped.


Dr Oz Talks about Glutathione 


The CF Connection

Studies have shown CF patients to be very deficient in Glutathione and here are some of the reasons I chose to supplement with it:

#1 It's an antioxidant (protection from degeneration)

#2. It's a Mucolytic (dissolves thick mucus)

#3. regulator of inflammation (Chronic problem with CF silently cause our cells damage)

#4. Immune booster (reduce lung exacerbation's. Fight disease)

#5. Repair Cells (repair damaged tissue)

#6. Digestive Health (commonly use to help IBS and any bowel issues)

#7. Aids liver health by destroying environmental poisons (drug build up, trans fats etc.)

#8. Elevate stress and anxiety (common with any chronic illness)

#9. Anti fungal

#10. Anti Viral

#11. Anti Cataracts (important on Kalydeco)

#12. Anti Kidney stones

#13. Anti osteoporosis

#14. Anti Allergenic 

#15. Natural pain reliever 

#16.  Anti Fatigue 


Practically how does it effect CF health?

Studies into Glutathione (GSH) have confirmed that "the expression of the CFTR is associated with enhanced Gluathione (GSH) ), effux from airway epithelial cells, implicating a role for CFTR in the control of oxidative stress in the airways."The EMBO Journal Vol. 22 No. 9 pp. 1981±1989, 2003. Which basically means, respiration & tissues damage is improved and prevented. Here's a visual for you to understand the significance of Epithelial cells in CF the airways:


A side on view of how a CF airway eventually looks after CFTR dysfunction, oxidative stress, inflammation and chronic infection = Bronchiectasis


This is what nebulized GSH directly works on to improves and prevent, by dissolving mucus, reducing inflammation and helping the CFTR to function better. 

Taking an oral Glutathione will also enhance this process from the inside out. Fact is ALL the cells in a chronically ill body would benefit from glutathione. General inflammation, digestion , liver, absorption, pain, diabetes, bone health, dental health.... EVERYTHING! 

My personal experience
Along with the other supplements I have been writing about, I started taking GSH regulatory over 8 weeks ago. I started with just the inhaled GSH which made my airways feel mush better, less inflammation and the mucus was effected. A lot of coughing initially  but ultimately thinner and lighter in colour. It did hit a baseline and so I started oral liposomal glutathione (GSH) as well. This enhanced and gave an additional overall improvement. I feel energetic, deeper breaths, increased FEV and I feel like I am getting stronger all the time and the positive effect has sustained this whole time. I still remain off antibiotic over 8 weeks!! 
If feels like I've cracked the code of my CF!

This blog has been a challenge for me. It so complex, difficult and unreal to try to convey in a short space the potential of amazing antioxidant, whether your on Klaydeco or not! I could write on and on.. I am sure I will have missed something important!! (I may edit it in later) Please take the time to read some studies I have linked below, nothing I take has so many CF specific studies to prove how this will directly contribute to CF health.
My lungs and general health feel the strongest I have since starting Kalydeco a year ago... in fact since I was a child!!!! 

On fire!

Links Glutathione (GSH) Supplements that I found to be Quality

 Reduced L-Glutathione™ Plus capsules for nebulizing

ReadiSorb Liposomal Glutathione



LivOn Laboratories, Lypo-Spheric GSH

http://www.iherb.com/LivOn-Laboratories-Lypo-Spheric-GSH-30-Packets-0-2-fl-oz-5-4-ml-Each/25232

Always shop around online for sales!!!!

Please note: I make my own Liposomal Supplements now, but these retail versions were what I started with. If you do decided it helps your health I can say making Liposomal supplements is very easy and makes taking long term high doses affordable. The link below this is a recipe on 'how to make Liposomal Vitamin C'. I follow these guidelines for making both Liposomal Vitamin C and Liposomal Glutathione.




Further reading

New insights into the pathogenesis of cystic fibrosis: pivotal role of glutathione system dysfunction and implications for therapy: http://www.ncbi.nlm.nih.gov/pubmed/15658882

Glutathione:A Radical Treatment for Cystic Fibrosis Lung Disease? http://journal.publications.chestnet.org/article.aspx?articleid=1083089 

The Role of GSH in Cystic Fibrosis:   
http://www.americanhealthcarefoundation.org/cystic-fibrosis-md/GSH.cfm 

Dr. Clark T. Bishop, M.D.: Protocol for Augmentation of GSH Levels in Cystic Fibrosis Patients, and Related Information: http://uvicf.org/researchnewsite/glutathionenewsite/protocol.html

 Glutathione Metabolism and Its Implications for Health:
http://jn.nutrition.org/content/134/3/489.full.pdf+html 

New Insights Into the Pathogenesis of Cystic Fibrosis:
http://link.springer.com/article/10.2165/00151829-200403060-00003

Effects of Antioxidant Vitamins C and E on Oxidised LDL–Induced Adaptive Increases in Cystine Transport and Glutathione:http://atvb.ahajournals.org/content/18/10/1662.full

 The Journal of Cystic Fibrosis: 'Improvement in Clinical Markers in CF patients using a reduced Glutathione regimen: An uncontrolled & observational study':


Published in Nature: CFTR directly mediates neuleotide-regulated glutathione flux


 Springer Link: 'Glutathione exhibits antibacterial activity and increase tetacycline efficacy against Pseudomonas aeruginosa' 


Journal of Applied Physiology: 'Systemic deficiency of glutathione in Cystic Fibrosis'


Brigham Young University Article: 'New insight into Pathogenesis of Cystic Fibrosis; Pivotal role of Glutathione':
http://www.glutathioneexperts.com/pdfs/glutathione-cystic-fibrosis-6.pdf
The importance of glutathione in human disease:

Potential for antioxidant therapy of cystic fibrosis:


Pseudomonas aeruginosa pyocyanin directly oxidizes glutathione and
decreases its levels in airway epithelial cells:































Tuesday, 14 May 2013

CF Superhero Supplements: Chlorella



Chlorella (Chlorella pyrenoidosa) is a single cell freshwater green algae. It's so tiny (microscopic) that you need a microscope to see it! The name 'Chlorella comes from 'Chlorophyll', Chlorella happens to contain the highest content of it in any plant. In addition to this is also contains a huge number of vitamins, minerals, dietary fibre, nucleic acids, amino acids, enzymes & CGF (Chlorella Growth Factor) and more... hence being dubbed a 'Super-food' and rightfully so!

What's in Chlorella?

Chlorella Under the Microscope


General:
  • Moisture.... 3.6 %
  • Protein.... 60.5 %
  • Fat.... 11.0 %
  • Carbohydrate.... 20 %
  • Fiber.... 0.2 %
  • Ash.... 4.6 %
  • Calories.... 421 /100g
Vitamins and Minerals:
  • Vitamin A Activity .... 55,500.0   IU/100g
  • B Carontene ....................180.8   mg/100g
  • Chlorophyll a ...............1,469.0   mg/100g
  • Chlorophyll b ..................613.0   mg/100g
  • Thiamine (Vit B-1)................1.5   mg/100g 
  • Riboflavin (Vit B-2) .............4.8   mg/100g
  • Pyridoxine (Vit B-6) ............1.7   mg/100g
  • Vitamin B-12 ....................125.9   mcg/100g
  • Vitamin C ............................15.6   mg/100g
  • Vitamin D..............................910   mg/100g
  • Vitamin E .......................... < 1.0    IU/100g
  • Vitamin K..............................1.12   mg/100g
  • Niacin...................................23.8    mg/100g
  • Pantothenic Acid.................1.3    mg/100g
  • Folic acid...............................2.4    mg/100g
  • Biotin..................................191.6    mcg/100g
  • PABA......................................0.6    mg/100g
  • Inositol...............................165.0    mg/100g
  • Calcium.............................203.0    mg/100g
  • Phosphorus.....................989.0    mg/100g
  • Iodine ................................600.0    mcg/100g
  • Magnesium ......................315.0    mg/100g
  • Iron ....................................167.0    mg/100g
  • Zinc.......................................71.0    mg/100g
  • Copper 0.08........................0.08    mg/100g
Amino Acids:
(expressed in 'W/W %'. w/w- an abbreviation for "by weight," used in chemistry and pharmacology to describe the concentration of a substance in a mixture or solution)

  • Lysine....................3.46
  • Histidine................1.29
  • Arganine...............3.64
  • Aspartic acid........5.20
  • Threonine.............2.70
  • Serine....................2.78
  • Glutamic acid.......6.29
  • Proline...................2.93
  • Glycine..................3.40
  • Alanine..................4.80
  • Cystine..................0.38
  • Valine.....................3.64
  • Methionine............1.45
  • Isoleucine..............2.63
  • Leucine..................5.26
  • Tyrosine.................2.09
  • Phenylalanine.......3.08
  • Ornithine................0.06
  • Tryptophane.........0.59

Fatty Acids:
  • Omega- 3 Fatty acids....54 mg
  • Omega- 6 fatty acids ....56 mg
  • C 14:0.................0.6%
  • C 14:1.................0.9%
  • C 14:2.................0.9%
  • C 16:0...............15.6%
  • C 16:1..................9.1%
  • C 16:2..................5.5%
  • C 16:3................17.1%
  • C 18:0..................2.0%
  • C 18:1................10.0%
  • C 18:2................15.5%
  • C 18:3................22.8%
Assay performed by Japan Dairy Technical Association, Tokyo.


The reasons I chose take Chlorella


Chlorella Tablets


# 1. Chlorella growth Factor (CGF) is a nucleotide-peptide complex of substances found only in chlorella. Nucleic acids are the basic building blocks of life, and are critical to keeping your natural defense system working in peak condition. Studies have show that CGF can enhance your body's natural defense system activity, help to remove the multitude of impurities in your body, and renew cellular strength and integrity. CGF promotes faster than normal growth. The DNA and RNA we eat do not directly replace human cellular DNA and RNA, but their amino acid combinations after digestion and assimilation immediately provide the "building blocks" for repair of our genetic material. Scientists are documenting its potent cancer fighting abilities including its ability to repair damage to DNA and influence gene expression.
 Chlorella influences how genes express themselves! By taking Chlorella extract (a concentrated form of CGF) with tablet/powder of chlorella it increases the efficiency, giving quicker results. Wound healing is acceleration by 24% in most cases.
My CF Goal for taking it: Heal & Reverse Bronchiectasis (Damaged Lung Tissue)



#2. ImmunityImmunology studies have show Chlorella to stimulate B-Cells (bacteria fighters) T-Cells (virus & cancer fighters) & Marcrophages (large cells that are located in tissue such as liver, lungs, lymph nodes, thymus, abdominal, blood,bone marrow etc.). Macrophages clean things up (this process is called phagocytosis). Since there is only a finite amount of macrophages in one persons body it makes the clean up process limited. Studies have shown that Chlorella stimulate the immune system by way of macrophage stimulation.

#3. Oxygenation. Chlorella cleans the bloodstream. Hemoglobin is the protein in our red blood cells which binds with oxygen and gives blood its bright red colorChlorophyll cells are nearly identical to hemoglobin, with one exception: chlorophyll has a magnesium molecule at its centre while hemoglobin has an iron molecule at the centre of it. Chlorophyll is effective to strengthen the body against anemia and stimulates the production of red blood cells in the body. It also helps carry oxygen around the body and to the brain. Red blood cells are essential for a strong natural defence system and blood/tissue oxygenation. 


#4. Protect good bacteria/Protect against bad bacteria. Chlorella is not a killer of bacteria per-say, but does have a definite anti-bacteral growth action and displays some bacteriocidal effects against certain organisms under the right conditions. It does promote good intestinal bacteria (lactobacillus) to grow at 4 times faster than normal!

#5. Liver Health. Chlorella has been proven to protect the liver from toxic injury due to ethionine. The livers detoxification process is enhanced by chlorella. (a good thing while taking Kalydeco. Kalydeco can effect the liver adversely, long term side effects are still unknown. I take Chlorella as a preventive)

#6. Bowel Detoxification. Many studies have shown the link between poor bowel/intestinal health and chronic disease. Clearly with CF this is an issue. I personally have found that when my gut health is looked after, my overall health is better. Chlorella can clear bowel toxicity within a few days of taking it.

#7 Infection control. Chlorella induces higher levels of interferon (a natural secretion of the body thought to be a simulator of macrophages). Interferon has been shown to promote the killing of many kinds of bacteria: Toxoplasmosis, Leishmaniasis, Listeria, Mycobacterium intracellulare (associated with chronic Lung Disease) and Mycpbacterium leprae (leprosy). It also prevents pneumonia.

#8. Enzymes. Chlorella contains digestive enzymes such as chlorophyllase and pepsin, plus more... 

#9. Amino Acids. My second CF gene (G1123R) is involved (or causes problems) with amino acid function, the more naturally occurring amino acids I can get the better!

#10.Pancreatic Health. Chlorella helps pancreatitus, which is inflammation of the pancreas and Chlorella promote healthy blood sugar levels


So there are just some of the reasons I take it (yes there are more!). Beneath I will add links to some of the studies and articles I have read on Chlorella. As an anecdotal testimony I can say I am MUCH healthier when I take Chlorella than when I don't! I started high dose's of Chlorella when I was told to have a transplant (2009) for the simple fact I wished to accelerate the healing of my advanced lung disease and preserve any healthy tissue too (stop the bronchiectasis spreading rapidly) . If I had any natural chance of doing this I new Chlorophyll needed to be used/involved (as it was when I avoided lungs, liver & heart transplants at the age of 16). In my experience Chlorella is the closest natural thing I can take, next to Stem Cell therapy. Along with healthy diet and lifestyle (all the things I have covered in my blog previously), Chlorella has truly been the building blocks to my health over the past 19 years (in particular). I have used it on and off (a fact I regret as I believe I should have been taking it non stop!), but regularly once starting Kalydeco,  to once again build back my lungs. Early on on Kalydeco I peaked to FEV 65% the dropped almost immediately to 50% when I ran out and forgot to get more, I was hovering between 45%-55% for the last 9 months. I started again 7 weeks ago and I have gone back up to the 65% plus added to it!! There is no doubt in my mind there is a connection. With the help of Klaydeco correcting my G551D gene, it has accelerated the time frame in which I would have improved, but I still am convinced that even without Kalydeco, Chlorella builds back health, no doubt slower, but still does it. When I was 16 it took me a good 5 years to feel strong again regain my FEV to 50% at the age of 21. So you can see that Kalyeco has certainly made this process quicker/easier! 

Bottom line: On kalydeco, without chlorella, I was consistently going down in health, albeit MUCH slower than I naturally would do!!! Once starting Chlorella with Kalydeco I am constantly improving!!! My FEV shot back up to 66.78%. I feel stronger everyday and as my CT scan shows, my Bronchiectasis is healing. In my books it's win/win!!!!

A Chlorella Pond




Some Further Reading



Feasibility of a Photosynthetic Artificial Lung: "To build a model of such a photosynthetic artificial lung, the photosynthetic capability of a high temperature strain of the algae Chlorella pyrenoidosa was maximized at a cell density of 25 million cells/ ml to serve as the O2 producer and CO2 remover."




Detoxification with Chlorella:



Studies of sulfate utilization by algae 18. identification of glutathione as a physiological carrier in assimilatory sulfate reduction by Chlorella:http://www.sciencedirect.com/science/article/pii/0304421178900019



Chlorella: The Ultimate Green Food: Nature's Richest Source of Chlorophyll:



Chlorella Super DNA Repair Systems:

Chlorella Library:


Identification of anti-lung cancer extract from Chlorella vulgarisC-C by antioxidant property using supercritical carbon dioxide extraction:
http://www.sciencedirect.com/science/article/pii/S1359511310002047

Impact of Adjunctive Therapy with Chlorellav ulgaris Extract on Antioxidant Status, Pulmonary Function, and Clinical Symptoms of Patients with Obstructive Pulmonary Diseases: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3447618/




Dietary Supplementation with Chlorella pyrenoidosa Produces Positive 
Results in Patients with Cancer or Suffering From Certain Common 
Chronic Illnesses:



RESEARCH STUDIES ON CHLORELLA GROWTH FACTOR C.G.F:"The height and weight of all the children were recorded on a regular basis. At the end of the experiment in which the test group received two grams of Chlorella daily (except on Sundays) for 112 days, the average increase for boys taking Chlorella was inch in height and 2.3 pounds in weight. The boys in the control group grew 0.6 inches in height and gained 1.6 pounds in weight. The girls of both groups gained an average of 0.9 inches in height, but the girls who took Chlorella gained an average of 4.2 pounds, while the controls gained 2.7 pounds."

http://chlorellagrowthfactor.co.uk/research-on-cgf/



Dr. Mercola Interviews Ginny Bank on Chlorella




Here's to you CF. Tables are Turning... Ciao!