@timb
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Tim Blowfield replied to the topic Acknowledging grief and depression in the forum CF and Depression and Anxiety 1 week, 2 days ago
How normal you are. Well done. Depression is neither an unreasonable nor abnormal part of the human condition. It is a reasonable part of grieving and has been seen as so for thousands of years. Was present as the Hebrew slaves sat on the banks of the river in Babylon so poignantly told in the Chorus of the Hebrew Slaves in Verdi’s opera Nebucco,…[Read more]
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Tim Blowfield replied to the topic Sunday Morning (69) Kidney Surgery in the forum Adults With Cystic Fibrosis 1 week, 4 days ago
Good to hear you got rid of those rocks. They are not nice. Great to hear that you are getting great support. Love to you both.
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Tim Blowfield replied to the topic Let's talk about burnout in the forum Adults With Cystic Fibrosis 1 week, 4 days ago
Patient Burnout! Yes, My wife & I were talking about it last week. She has had a very difficult last 2 years with CF support being reduced as medical support was redirected to COVID. Then last January she almost certainly had COVID and has been slowly recovering from long COVID since. In April her CF physician resigned and to date he is still to…[Read more]
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Tim Blowfield replied to the topic Sunday Morning (68): What about the Kidney? in the forum Adults With Cystic Fibrosis 1 month, 1 week ago
Ahh! The ‘Kidleys!’ as my anatomy lecturer said some 60+ years ago. Very important. one of the 2 garbage collectors of the body. But they do more than garbage collection – more than being the sewers. The work very closely with the nearby Adrenal Glands to regulate water and electrolytes. They also play a big part in Diabetes and glucose…[Read more]
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Tim Blowfield replied to the topic Trikafta – Expect more benefit than just to mucous and sweat, lungs and gut. in the forum Trikafta: Triple Combination CFTR Modulator 1 month, 1 week ago
Sorry Judy that you are still confused. Join the club!
The issue with Chloride in the lungs and other mucous membranes is that there is too little Chloride being pumped out of the cells, combining with Sodium to form salt. It is that salt that attracts water into the mucous and makes it less viscous. The lack of salt in the mucous leads to it…[Read more]
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Tim Blowfield replied to the topic Trikafta Side Effects in the forum Trikafta: Triple Combination CFTR Modulator 1 month, 1 week ago
Hi Robert, Sorry to hear of your issues. Restarting TK at a lower dose is reasonable. I would think your gut has been has been abnormal your whole life and is having trouble coping with normalization. Your Sauerkraut is good. I would add a probiotic and a soluble fibre supplement (eg Benefibre) both of which will alter the gut biome and reduce H2S…[Read more]
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Tim Blowfield replied to the topic What do you wish doctors understood about living with CF? in the forum Adults With Cystic Fibrosis 1 month, 2 weeks ago
I wish they knew a lot more about the effects of the faulty CFTR protein has on the whole body – not just the lungs – endocrine glands, muscles & heart, blood vessels, etc even nerves. And be open to seeking why TK is presenting effects in so many organs as well as the lungs.
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Tim Blowfield replied to the topic Trikafta Side Effects in the forum Trikafta: Triple Combination CFTR Modulator 1 month, 2 weeks ago
Any more comments on this thread? Side effects or normalising effects of TK? What are CF Doctors saying? What is Vertex saying?
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Tim Blowfield replied to the topic Trikafta and Mental Health in the forum Diagnosis Information and General Questions 1 month, 4 weeks ago
A good question is why? Why is TK ‘causing’ such mental health issues. With lung and bowel improvements one would expect mental health to improve as one feels better. Or is there an organic change in the brain caused by ion changes there-in. Lower chloride affecting the other ions (K, Na, Ca etc) affecting brain function? Does this suggest why…[Read more]
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Tim Blowfield replied to the topic Sunday Morning (61): From Infection to Inflammation in the forum CF Science and Research 2 months, 4 weeks ago
Yes. With most drugs reducing the dose is better than skipping doses. Various factors need be considered such as how long the drug is active in the body and the levels at any one time. The former is generally reported as the ‘half life’ – that is the time it takes for half the drug to disappear. The other is usually reported as a curve and also…[Read more]
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Tim Blowfield replied to the topic Sunday Morning (61): From Infection to Inflammation in the forum CF Science and Research 3 months ago
Yes: Inflammation and infection do go together. Infection without inflammation is generally harmless. Normal Flora is just that. Bacteria that exist in a commensual way. Inflammation is the body’s reaction to a foreign substance/organisism. The body may react appropriately, inadequately or excessively. If inadequate the organism may not be…[Read more]
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Tim Blowfield replied to the topic Caregiver Role Reversal in the forum Adults With Cystic Fibrosis 3 months, 2 weeks ago
Paul’s comment “love and be loved, love and let love be” is so true and appropriate. Being a caregiver is not easy but understanding love is a great help. Another Paul wrote a great passage on Love in his letter to the Corinthians (1Cor 13) – he concluded “the greatest of these is love”. He talks about other gifts and abilities and says “If I…[Read more]
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Tim Blowfield replied to the topic Trikafta and conjunctivitis in the forum Trikafta: Triple Combination CFTR Modulator 3 months, 3 weeks ago
‘giving precious advice’ We need to be wary of such – sharing experiences is great and appropriate but ‘advice’ needs to be weighed up carefully. There is a mountain of bad advice on the Internet – some dangerous. Sharing what works or does not work for you is good and may stimulate and suggest questions and possibly answers to the issues that…[Read more]
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Tim Blowfield replied to the topic Trikafta and conjunctivitis in the forum Trikafta: Triple Combination CFTR Modulator 3 months, 3 weeks ago
Yes. It is the shampoo with myconazole and chlorohexidine – also leaves the skin slightly acidic which also inhibits the yeast. – Sorry to hear of Budda’s paws – certainly worthwhile washing them (his paws) as soon as possible after returning from a walk. Can include a spray of Vinegar before drying too. Mildly acidic skin wipes are also a…[Read more]
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Tim Blowfield replied to the topic Trikafta and conjunctivitis in the forum Trikafta: Triple Combination CFTR Modulator 3 months, 3 weeks ago
Sounds suspicious. Maybe an allergist (Allergy Specialist) can test you to see what you are allergic to. Skin tests are routine these days – should not be difficult to make a test solution from a TK tablet.
Re your Labradoodle: yes the breed was developed by the Royal Guide Dog Society here in Victoria near to my old Practice and despite its wide…[Read more]
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Tim Blowfield posted a new activity comment 3 months, 3 weeks ago
We do have a lot of education to do. So much bad information about CF is out and about in the general medical population. This is just one piece. To all pwCF, their families and friends – keep teaching!
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Tim Blowfield replied to the topic Trikafta and conjunctivitis in the forum Trikafta: Triple Combination CFTR Modulator 3 months, 3 weeks ago
As the old add said “When you are on a good thing, stick with it!”. If Antihistamines work – it seems to be an allergy – on top of CF! There is no reason why pwCF should not get allergies.
Sodium hyalurate is quite natural – highest concentration is in joint fluid. Has helped Reva’s dry eyes.
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Tim Blowfield replied to the topic Trikafta Side Effects in the forum Trikafta: Triple Combination CFTR Modulator 3 months, 3 weeks ago
Not sure what a ‘pseudohole’ is but it sounds interesting. Drooling suggests that you are producing more and thinner saliva which for a pwCF is generally good. PwCF often have dry eyes & mouth similar to those with Sjogren’s (Indeed can have both) often causing swallowing difficulties. That the solutions within the eyes have changed should…[Read more]
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Tim Blowfield replied to the topic Trikafta Side Effects in the forum Trikafta: Triple Combination CFTR Modulator 4 months ago
Talk it over with your CF Physician & clinic staff. They may not know the answers and may try by modifying the dose for a while. Or adding something else. Tingling, etc, does seem to be a CF thing – Reva had ‘Restless Leg Syndrome’ for years before CF was diagnosed – seems to occur in milder forms of CF – prednisolone seems to have helped her. Dry…[Read more]
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Tim Blowfield replied to the topic Sunday Morning (56) Taking the bus to Paris in the forum Adults With Cystic Fibrosis 4 months ago
Oh! How philosophers get tied up in knots and so often end up as the G542X Cf mutation. So much nonsense. As a Christian I acknowledge that I am: as God made me and loves me. I need no other and my response is to love him and all he has created – even enemies though that can be difficult. I love because He first loved us (me!) and what good I do…[Read more]
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