Forum Replies Created
October 27, 2021 at 8:10 pm #17639
That was an excellent answer, Paul.
Re: laxatives: I am very wary but they are used widely in CF. But they often seem to lose effect after a time. Adequate soluble fibre in the diet is important for the bowel to function well. In the push to get as much nutrition into pwCF it is often neglected. Fibre in the diet modulates the faecal consistency – hard faeces are softened and very soft and fluid faeces thickened. Constipation is common in pwCF as the bowel is abnormal and affected by the thickened mucous. Fibre should help mobilise by helping it through the gut. The modulators (Orkambi, Trikafta, etc) should reduce the thickness of the mucous allowing more normal intestinal function.
If you need a laxative so be it but adequate fibre is essential and should be the start for most people.
September 27, 2021 at 8:12 pm #17510
Thanks Jenny and Paul,
Your discussion of what has happened post starting trikafta/kaftrio is very important. May be CF was was protecting you from other respiratory problems. (Sickle Cell Anemia largely protects against malaria. Not sure which is better!) Such protection can lead to selection for a mutation – what may CF do?
September 27, 2021 at 8:00 pm #17509
You are amazing Bailey. We all fail to various amounts . Recognised by many philosophers and teaches in the past. The writer of the Bible book of Romans notes it in Chapter 3 verse 23 and even Jesus himself replied “<b>No</b> <b>one</b> is <b>good</b>—except God alone” (Mark 10:8) acknowledging that we all fail.
But the way you pick yourself up and carry on is wonderful. Many do fail and are unable to pick themselves up. They need our help and encouragement. The Christian’s recognition of failure is not the end. That end is in the hope that follows: hope declared in the Gospel and the very grace of God.
So much for my ‘preaching’ but it is hope that is the counter to failure. As pwCF there is is hope that new treatments and understanding will resolve all the negatives of CF and allow pwCF to live a normal life.
Keep up your HOPE!
September 27, 2021 at 7:30 pm #17508
Hi Rasmus, Thanks for sharing this.
Hair loss occurs when the hair follicles stop producing hair cells and keratin. This normally occurs cyclically but increases with many illnesses (eg severe infections) and treatments (cancer treatments are notorious). Why it may have happened in your case we can only speculate. Was it the result of Kaftrio (TriKafta) or not we don’t know. It may be that kaftrio caused a new spurt of hair growth that for that patch was syncronised so all got to the end of its growth phase all at once and was shed all at once. In that case you may see some new growth in a few weeks. Adrenal corticosteroids are well known to promote hair growth.
Tell your CF team to record it as a possible minor side effect of the drug. What other ‘side’ effects have you noticed. Not all are detrimental. Has your Adrenal function changed? Blood Potassium levels?
September 27, 2021 at 7:12 pm #17507
Nothing about CF surprises me. My wife has had variations in red cell size & shape for as long as I can remember. She also has vasculitis and Sjogren’s syndrome. On ultrasound her blood vessels are ‘small’ and she has had obstructions in the Right Femoral and R Renal Arteries. Blood squeezing through constricted vessels may be expected to cause altered cell shape. The Sjogren’s is almost certainly a reaction to the chronic inflammation of her CF. Vasculitis? Is it a direct result of the faulty CFTR or of the chronic inflammation? Inflammatory markers are often high in pwCF.
A question for pwCF taking Trikafta: Are these ‘weird’ symptoms improving.
September 11, 2021 at 6:00 pm #17445
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 doctor when he heard she was an exam guinea pig remarked “That’s cruel”, as her case is so complex and large.
August 21, 2021 at 6:18 pm #17357
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.
August 21, 2021 at 6:05 pm #17356
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.
August 21, 2021 at 6:00 pm #17355
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 a good dietitian and most do have supplementary vitamins and minerals. It will be interesting to see what changes with the use of the corrector/potentiators.
August 17, 2021 at 9:47 pm #17339
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 the result of the abnormal electrolyte balance within the brain cells such as high salt, potassium and calcium together with high intracellular water. This needs investigating but has to date been largely ignored.
Is the effect of the corrector/modulators affecting these intracellular electrolyte and hydration levels and thereby affecting mental state?
August 17, 2021 at 7:50 pm #17338
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 result of electrolyte and water adjustments occurring in brain cells as in all other cells of the body.
August 5, 2021 at 8:57 pm #17287
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.
August 5, 2021 at 8:47 pm #17286
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 bring your own.
Our local CF at the Alfred Hospital now schedules appointments such that the time spent in the waiting room is minimal, go ASAP into a cleaned consulting room (CR) where Drs, Physios, and ancillary staff come in one after another all in PPE. May wait a while in the CR.
August 3, 2021 at 5:53 pm #17271
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. Has it improved adrenal function, heart function, bone health or even the brain? We need to document all it’s effects. Will it help PWCF who have already had lung transplants?
August 17, 2021 at 9:57 pm #17340
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 remarkably safe and in the CF Clinic context are extremely well supervised,