Tim Blowfield

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.

We have 4 children and 2 miscarriages. At the time they were conceived and born we did not know my wife had CF – indeed we knew nothing of CF when the first 3 were born. Labours were generally tough and long with the last 2 by caesarian.

Throughout her younger years she experienced quite nasty menstrual pain and frequent headaches. After our 4th…[Read more]

Hi Paul and all,

Yes it is well known the effect of hat faulty Chloride Channel on the Mucous especially in the lungs.

The elephant in the room is in what is going on inside the cells. As I have postulated before: Retained Chloride caused high levels of Cations (Na, K , Ca & Mg) within the cells as well as water. Cells may be expected to be…[Read more]

Whoopee! That is great.

Re: side-effects after starting these Corrector/potentiator drugs: many have been reported and some have reported that they decline as time goes by. This is almost certain as the body adjusts to being ‘normal’. The headaches and many other symptoms seem similar to what Vets see when sheep are provided with fresh water…[Read more]

Hi Paul,

or would it be more correct rather than pushing up the daisies you should read pushing up the Tulips.

Sorry Bailey, UTI’s are a bugger! Our CF Unit has prescribed a supply of Amoxicillin/clavulinate antibiotics for just this reason – so such infections can be jumped upon quickly.

Reva’s recent UTI was cultured but the report was that…[Read more]

I guess it is because we (my wife is 78 with CF) have had more years to develop problems with slowly developing issues such as cardiomyopathy and Atrial Fibrillation,  Hyperparathyroidism and Adrenal failure. Till I realised that the electrolytes within the cells need to follow the same basic rules of Chemistry re the balance of solutions all…[Read more]

Sorry Judy, please accept my apology. It was a convenient term I used without thinking it would cause you grief. Thanks for pointing it out.

We are certainly much more than our CF. What I wish to convey is that CF does affect much more than just our lungs, indeed much more than lungs, gut and Pancreas. It affects every cell in the body – some…[Read more]

Go for it! Yes even by moderating this you are doing a great job. Thanks.

Thanks for posting – wonderful news. As a CF community we need to document all these ‘improvements’ we experience with these new drugs. In this conversation not only has improved sinuses been documented but reduced inflammation. I do believe that many issues have gone under the radar. Reva has many issues that are not commonly reported including…[Read more]