Hello world!

What is CF related? What is not?
As we learn more about CF the issue is very cloudy. The recognition that CF is not just a disease that causes abnormal mucous that affects the lungs and other mucous membranes but that the failure of the Chloride pump due to the faulty CFTR protein leads to abnormal intracellular electrolytes. If Chloride ions are…[Read more]

Sadly not all pet dogs are as fit and healthy as yours. Over my 50 years I have seen many severely disabled pets. Heart disease is too common, Cavs with syringomyelopacia, Dachshunds who get about using trolleys as their spine has been damaged, breathing issues with Pugs and so on. Many of the more severely are euthanased. Have not seen a genetic…[Read more]

Hi Paul & Debbie,
Labradoodle was first developed by Guide Dogs, Victoria (GDV) precisely as a low allergenic guide dog. The name actually is registered to them though now many breeders use it, many without permission. It is probably best described as a standardised cross between as the name suggests a Labrador and Standard Poodle (both breeds…[Read more]

Pets do give us enormous psychological and emotional benefits. We do miss Fluffy and Jute who both lived long lives with us. Fluffy, a ginger female cat and Jute a ‘mini German Shepherd’ (or that was his colour).
There have been issues raised about whether pets are a risk to persons with CF. Dogs do often have infections with Pseudomonas…[Read more]

Have you seen what the ‘little ol’ ladies’ do with Zimmer frames in the musical ‘The Producers’. In a show by the Production Company in the State Theatre in Melbourne, Australia they were cartwheeling all over the stage. Hope you feel that well soon!

Hi Paul met Debbie. I like your positives.

Fear not – computer (confuser) inexperienced or not – your comments are important. You will learn.

As a person who does not have CF but who married a girl who does have CF but did not know it. Indeed did not know it for almost 40 years though suspected it for the last 10. Not sure how I would have reacted had we known. But since we have known (she was diagnosed in 2009) our determination is to stay and support each other continues. There were…[Read more]

Good to hear you are progressing well. We as school kids referred to PT as Physical Torture. Now you refer to a Physio Terrorist! My wife has undergone 2 lots of spinal surgery as well as surgery on both shoulders. Her spinal surgeon, who has Asperger’s, does not like PT afterwards nor the use of a neck brace. He might have Asperger’s but is a…[Read more]

I certainly believe that most of the co-morbidities that CF’ers suffer are well connected to CF. I have posted many times that the faulty CFTR protein which stops Chloride being pumped from the cells causes high levels of the Cations Potassium and Calcium in the intracellular fluid. High Calcium in the parathyroid Gland cells is sure to affect…[Read more]

No surprises that Trikafta is causing side effects. CF’ers have often lived for years with not just abnormal mucous clogging up the lungs but abnormal electrolyte levels within every cell of their bodies. If Chloride (an anion) is not being pumped out then it may be expected to be high within the cells. Cations (Potassium and Calcium) will also be…[Read more]

Certainly we have. Prior to Diagnosis of CF in 2009 my wife had multiple comorbidities over many years – bowel issues, respiratory then heart – during the 2000’s she was accused of Hypochondria and being a malingera by a number of Doctors. It was indicative that they did not understand her and even after we thought that CF was behind it all and…[Read more]

Tobi & Deafness.
Nebulised Tobi should not cause deafness like i/v Tobi and other aminoglycosides do. Little is absorbed from the airways into the blood and on into the ears. Local irritation of the airway epithelium is why some may have their voice affected.

Paul, You are quite right. We do need to understand ourselves and not seek to find scapegoats. Yes there are some medical providers who do allow ‘gender’ to influence their decisions but much more common are other issues. WE have found having CF does affect what treatment is offered. Ageism is another issue. My CF partner has had a major public…[Read more]

Just remember Jenny: Those who have most birthdays live longest! Unless you are born on February 29th. I had an uncle who celebrated his 21st birthday aged 84.

Then there is O’toole’s Law “Murphy is an optimist!”
and you may also ask ‘Do you know “Coles Law?”
Spell (or say) it a little differently and you get ‘coleslaw.’

In 1976 in the Senior Staff Common Room of Egerton College in Kenya we had a great discussion comparing the political setup in Australia (2 major parties) and Kenya (one party).
I commented about the main Australian parties “Liberal’s lousy and labor is no better”.
In the years that have past all I can add is “They have proved it!”.

It is often…[Read more]

Chaos theory – alive and well in CF. So complex a disability!
Do stick with it Jenny.

Hi Becky,
Yes the liver is often affected. May be due to bile duct obstruction with abnormal mucous but I suspect it is more intrinsic caused by electrolyte inbalance. I prefer to refer to CF as a disability – a genetic disability that is in every cell of the body. While the lungs are affected most commonly by the failure of the lung cells to…[Read more]

Nothing should be out of bounds for discussion wrto CF – we do need to recognise that it is a complex disease with so many branches.
The bowel disease that Reva endured for over 20 years was very painful and difficult. There was a large amount of very smelly and irritant contents which was very high in mucous (obviously decomposed abnormal…[Read more]