Tim Blowfield

My wife was recruited as a ‘patient’ for the annual Physician’s Exams, exams for doctors wishing to progress to specialist physicians. Candidates must get a detailed history from the patient. At one ‘practice exam’ the candidate asked “when did you get CF?”  She immediately knew he knew nothing of CF but that had changed by the end.

Another…[Read more]

Certainly it does happen. We are experiencing a nasty wave of the delta variant but the numbers ill who have been vaccinated are few, very few need hospitalization and none have died. So we can say that both vaccines we have in Australia are working well.

Fall! Here that was 6 months ago or if you are a ‘glass 1/2 full’ person will be in 6 months. Spring is here or almost so. Today a beautiful day – bright & sunny, 21deg – not too hot/ not too cold.

Certainly, Paul, inadequate amino acid intake and deficiency is sadly well known, Marasmus, Kwashiorkor etc are all associated with mental illness and malfunction. Individual amino acid deficiencies do occur such as of Lysine in high grain diets resulting in Niacin deficiency. Anxiety and depression are well known. PWCF should have the services of…[Read more]

Not at all surprising. Vertex has shown that there are at least 120 mutations that should respond to Ivacaftor yet bureaucracies continue to deny PWCF even a trial.

Specialist should be allowed to try these drugs on any PWCF they believe that the drug should work and to continue if they do.

The Ivacaftor containing drugs have been shown to be…[Read more]

I would agree with your thesis especially with someone with CF. CF resp disease is usually at the forefront. It is not unreasonable that a PWCF may have depression and mental illness  the result of their long battle. A proportion will have mental illness in similar proportion to ‘normal’ persons. But is some at least of the mental illness of PWCT…[Read more]

Wonderful, Jenny, to hear of your good response. Does not surprise as TK is such a new drug and thought experimental evidence suggests an appropriate dose rate experience may indicate other. It does not surprise that side effects such as insomnia, depression and others as the drug takes its effects. As I have said before this is probably the…[Read more]

Sorry Bailey to hear of your distress. Your reaction is very normal but that is also something  to be grumpy about. How we deal with the disappointment is an issue – do we let it cause issues with family and friends – esp in your case your daughter. It is difficult.

The great thing is today surgery has a great prognosis compared with 30 years ago.

What is the ideal waiting room?  What suits one person may be horrible for another. The chairs that suit one person may be painful for another. COVID has spread people out in waiting rooms which is beneficial for PWCF. Snacks – I would be wary – can bring your own. Books have largely gone from WR’s with COVID – again with a little planning can…[Read more]

I do hope that birthday was great and Debbie gave you a great day. You do know that persons who have most birthdays live longest. I’m working on it have had 77 so far – plan on another next year.

Do document effects of Trikafta on body systems other than the lungs. It is great to hear in the improvement in lung function and exercise tolerance.…[Read more]

Fantastic Vinny to read your story. Trikafta has been fantastic for most who have started on it with remarkable improvements in lung function. Few have commented upon improvements in bowel and pancreatic (diabetes) function. Have any men found improvement in sperm production.

I am interested to see whether PWCF may experience other improvements…[Read more]

Hi Judy, I doubt if the old Buddhist poet thought about the order. ‘May you be peaceful and at ease’; and ‘May you be happy’ may also precede ‘wellness’. I have known some amazing persons who despite severe illness were content and happy. Being well is the one attribute here which we may have no control over. We can determine to show loving…[Read more]

Paul has given you a lot of very good information and reasons why you keep culturing the same bacteria. That the bug is resistant to the A/B used is highly probable. That a sensitivity is done every culture is very important – can give misleading results esp with Pseudomonas but is still very valuable. My wife recently had a number of MC&S done…[Read more]

Much research and rethinking continues to be needed. Why are so many PWCF on Trikafta (T) having headaches, insomnia and other neuro signs?

I suspect this is because T is affecting electrolyte levels in the brain cells. Our researchers need to look closely into this and not just dismiss it as a ‘side effect’. Also the effect of T on other cells -…[Read more]

Sorry Jenny that you have had such ‘side effects’.  As they say in Swahili ‘pole sana’ – a term of condolence that you may use in all circumstances from stubbing your toe to losing your mother-in-law.

Not surprising to see such side effects considering the breadth of effects that the faulty Chloride transport in CF may be expected to have.…[Read more]

Next culture grew Citrobacter freundii which is resistant to Amox/clav and Cephalosporins but sensitive to Trimethoprin.

I suspect that it was previously present but identifies a as ‘normal faecal flora’ and as such considerred not a cause of UTI. Its response to Bactrim which contains T was good.

Shows value in identifying even what may be…[Read more]

Ah! So much wonderful progress! And rethinking of the issues! Discovery of the CFTR gene was a game changer as is the use of Creon and most recently the Potentiators/Correctors.

What next? Do we continue to concentrate on CF as a problem of mucous and mucous membrane containing  organs?

It is now apparent that the faulty CFTR gene affects other…[Read more]

Very true – there is so very much variability in CF. We understand so little of this chameleon of a problem. I have struggled to understand it just the little I do. The effect of abnormal intracellular electrolytes on cell function has been glimpsed at for a long time but sadly been ignored and put in the “too hard ” basket or seen as irrelevant…[Read more]

I have tried to insert a diagram I have that shows this more clearly but have failed.- can’t get it to show.