Tim Blowfield

My father said: “If work interferes with play, give up work!”

He did and then he died (some 20 years later at 86).

It still appears that these issues with Trikafta (TK) and electrolytes are still not being addressed by Vertex nor by most if not all researchers and CF Physicians.  CF Physicians need to be not just specialists in Respiratory Medicine but good General Physicians.

The discussion on this needs to progress. Side effects of TK need more…[Read more]

Have your CF Drs explained why the liver was affected? No it does not suit everyone. But why? We can expect that the liver cells will be affected by changed electrolyte transport. Maybe that caused the bile output to increase into an already congested/partly blocked gall system. Have you gall stones? Many pwCF do.

We appreciated 5 Feet apart. Yes it was not perfect and it dealt with one particular couple. Others with CF may have different experiences. No two relationships are the same nor are experiences with CF the same. There is much that is common but we are all unique. So no one film or documentary will cover all experiences. But 5′ Apart did deal with…[Read more]

Hi All, Any more reports of side effects? Please keep them coming. Any heart issues? Endocrine? Muscle strength and Neurological?

Just a little knowledge of 1st year Chemistry – Think of anions and cations as things with – and + charges on them – and for a solution of them to work well the need to be in the correct proportion – balanced. If not balanced – then the cell does not work well. Too much of one such as Calcium (Ca) which is a cation, a +, and the cell may be…[Read more]

Osteoporosis is well reported in pwCF. Usually considered to be the result of inadequate nutrition caused by poor intestinal absorption. That may well be part of it but I suspect that abnormal intracellular Calcium may be a big part. If Chloride is retained within the cells then it (an anion) needs to be balanced with high cation levels. Cations…[Read more]

Hi Jeanne,

Your story does not surprise me.  But that your fingers have improved is wonderful. The side effects of TK are many and varied and such indicates the wide effect of the faulty CFTR gene in our bodies. It suggests every cell in the body is affected – the failure of the Chloride channel having effect to some degree or other in EVERY…[Read more]

CF – can stand not just for Cystic Fibrosis (CFib) for Chronic Fatigue (CFat) or Cardiac Failure (CFail). All three of which are common in persons with Cystic Fibrosis. Our experience is Chronic Fatigue is caused not just by the lung disease – Reva has CFail and Pulmonary Hypertension – all caused by the faulty CFTR gene & protein. So much is…[Read more]

Yes; Shows a total misunderstanding of CF.  I too dislike the term “late onset ” with regard CF as it really shows not just a misunderstanding but a lack of perception – Symptoms were present but just not seen. Sadly even CF physicians and doctors are not immune especially with regards to CF co-morbidities. These are too often dismissed without…[Read more]

There is a big problem with CF:

Use it with any but the CF community (including many Emergency Depts)  and they immediately think of;

CF = Cardiac (Heart) Failure

CF = Chronic Fatigue

So we need to be careful where and how we use it. We need be careful with any acronym to make sure the ‘other’ person really knows what we are saying. Can’t assume!

Hi Wendy, It is great that you are getting somewhere. Fungal sinus and lung infections are common in people with CF (pwCF). Infections are the most common problems but what of other co-morbidities? PwCF report so many other issues – Hormonal, (eg Hypokalaemia, Adrenal failure, hyperparathyroidism), Vasculitis, Pancreatic malfunction, Diabetes even…[Read more]

I would add

pwCF   = person with CF

My wife was diagnosed in 2009 aged 67 – now 80. I did hear of a lady in California diagnosed at age 94 after her 59-year-old son was found to have CF.  Now that is a LATE diagnosis!

Late diagnosis – but not ‘got’ CF at that age. Many have shown symptoms all their life – oft diagnosed as Asthma. And asthma they had as the word asthma simply means…[Read more]

LF has declined but is still quite good for a pwCF. Her issues are the Co-morbidities – cardiomyopathy, muscle weakness, hypokalaemia & Adrenal failure, Hyperparathyroidism, Diabetes, etc. all appear to be caused by intracellular electrolyte abnormalities caused by the faulty CFTR protein reducing Chloride transport.

My wife recently turned 80. Not bad with CF. Was not diagnosed till age 67 though we suspected it for 10 or so years. For many years she had presented a variety of vague and mysterious symptoms (mostly bowel and an inability to tolerate altitudes) which our Doctors could not make sense of. More than once she was accused of being a hypochondriac…[Read more]

Hi Robert,  How are you going? How is your gut?

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]