Tim Blowfield

Oh! CF! So complex. Great to hear your story Judy and sorry about you failing to get pregnant.
We do tend to blame the thick mucous for everything wrong in CF but it does not answer a lot of questions. Why do CF persons have so many drugs that they don’t tolerate? Why so many co-morbidities? Are they CF caused?
Heart disease was considered as not…[Read more]

Thanks Paul, That is fantastic.

Rare! We are definitely so. My wife was not found to have CF till she was 67. Is now probably the third oldest in Australia. While she has the common G542X mutation on one Chromosome she has a rare mutation (R75Q) on the other. Many considered the latter not to cause CF but of a checklist of 25 common problems seen with CF Reva showed 20. For a CF…[Read more]

Nothing like a nice cheese snack for morning, afternoon or evening tea. Melbourne may often have all 4 seasons the one day, but so did Egerton (Agricultural) College in Kenya when we were there in the ’70’s. The College had a small dairy factory for teaching Dairy Science and often produced a very nice cheddar. We would often get up to a nice cool…[Read more]

A recent discussion with her Dietician suggested pretzels as better than salty chips as a source of salt.

CFers have enough to cope with that Depression and Anxiety (D & A) should be not unexpected. Coping with CF is likely to lead to frustration, D & A.
But is that all?
May well the intracellular electrolyte inbalance also be a reason (cause) of these mental issues. That this is a probability is shown by the side effects being seen with Trikafta as…[Read more]

Yes. This needs to be watched very carefully. I do hope that it is just part of the adjustment process and that most will adjust. Restarting at a lower dose is always a reasonable thing to do – gradually working up. But a lower dose may be all some need.
My wife was recently started on the new Heart Failure drug at 1/2 the smallest sized tablet -…[Read more]

So much that is unknown about this drug and CF. Rhabdomyolysis may well be due to the person on Trikafta being able to exercise more and to suddenly and too rapidly increase muscle activity. It would suggest there is a marked change in muscle cells. What were the results on electrolytes? (I do believe – as said before- that intracellular…[Read more]

“Words, Words Words” so sung Eliza in a rather famous musical. they can be so powerful. ‘Inclusivity’ – a word with so much meaning, so powerful and so often misused. So often it it used in a way that simply pushes ‘my agenda’ to the exclusion of others – often to the exclusion of established mores. Minority unconventional groups often use it to…[Read more]

Nothing surprises me here – so many angles! Gender certainly is a big issue – there are still far too many Med Practitioners who talk down to their patients esp if female and do not listen. Too many assumptions are made usually based on what the textbook says – or less.
Patients MUST develop a healthy relationship with those charged with their…[Read more]

I agree with Steff. This is an exciting drug showing much promise.
Eloxx. can you do some stage 2 trials in Melbourne, Australia. Prof John Wilson of CF Unit, Alfred Hospital, is willing as is my wife who is heterozygous for G542X. She is an excellent person to trial the drug as she has complex effects of the failure of the ion (Chloride)…[Read more]

How can I encourage you? Certainly not by tearing you down, refusing to allow you to be comfortable in your body, safe in your decisions. Love is not that. Love is standing with you, supporting you as you struggle with life (and boy! CF’ers do that in heaps). Listen but don’e judge.
There may be sometimes when a contrary argument is warranted but…[Read more]

Sorry to dillusion you Paul. The Turkana area in NW Kenya where Leakey found those famous bones from which we are postulated to be descended from is now an arid harsh inhospital environment where swinging from tree to tree is just not possible.

Nobody likes change! Well almost nobody!
The unknown. A few are challenged by it but most fear it. Whether it be Columbus’ sailors who feared they would sail off the edge of the world as they sailed west. The astronauts may have had much preparation before setting foot on the moon but there was still huge risk. Or just a CF’er starting on…[Read more]

My condolences to all suffering from this ‘global warming’. So many suffering from the failure of electricity supply.

My wife has had pain in so many ways. Currently back pain but pain in the hip area, legs and other places common. When she had Hyperparathyroidism pain was a feature till the offending ‘Adenomas’ were removed. We believe it developed as a result of the CF causing abnormal Calcium levels in the Parathyroid cells.
She has also been shown to have…[Read more]

Sorry to hear of your woes. Yes a stomach upset can make one dizzy and nauseous. Not nice. With my wife it may often be a harbinger of a blockage (not uncommon in those who have no large intestine). She has been found to have Gastro-Oesophagael Reflux which is affecting her Larynx but not causing pain.
This is why we need drugs which…[Read more]

Well said Paul. Bodies are amazing even the bodies of CF’ers. But when things are tough it can be difficult and for a CF’er to be struggling is understandable.
Personally I believe that it is/was God who made us but others may talk of ‘nature’ not believing in God. In either case we can still ask ‘why the defects?’ and not find a satisfactory…[Read more]

Paul, You are right – there is not much room for the “+’s” as CF affects every cell in the body. Yet they surely exist. But even if not caused by CF the Cf abnormality will affect the body’s response to both the disease and the treatment. Our experiences with Rhumatologists have been most disappointing, Missing such as ruptures Biceps Tendon and…[Read more]