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Hello, New here and would like some advise please,
My Dad was just recently diangosed with IPF although we suspected hes had it for approx a year already, diagnosis got delayed as to the type of fibrosis he had due to him having a heart attack, - which became a priority has he had to have stents and then recover, then he developed a chest infection & was in hospital all over xmas, they couldnt do a CT scan until his chest infection had cleared completely, so they could see exactly what was going on. He has had a persistent cough for a long time, and very severe breathlessness, very low iron - which contributed to the breathlessness. He is home now on Oxygen 16 hours a day, they plan to ween him down off this gradually so see how he can cope, as he was on it due to the infection and low iron making his oxgyen lower than the fibrosis itself.
He is 73 with diabetis, high blood pressure, moderate kidney disease, they have advised us he will be sent to Aintree, Liverpool, where they will decide if my Dad will eligible for the new drug Pirifidene (spelling), does anyone know what they use as a qualifer? I am concerned they will dis-qualify my Dad as he is 73 with other ailments. He is in shock at the moment as he is worried he will die suffering soon, and he doesnt want to suffocate, this makes me sad, as I know this feeling myself after nearly dying from heart failure through pregnancy, choking and gasping for air (my life was saved and I am fine now, my heart recovered) and I dont want my Dad to go through this ordeal.
They have told him in July his fibrosis was mild, and just recently when they confirmed diagnosis last week, they said it had gone worse (probably through the infection) but only slightly. I just hope he will get this new drug - does anyone know how long it can extend life expectancy? I understand everyone is different. I am getting Married in August, and I know he is worried about walking me down the Aisle (but it has also been his dream) and I know hes very nervous about doing a speech and I worrying this would make him even more breathless. His breathing was so bad before Xmas, he was out of breathe just resting sitting down , and his cough was awful to watch. Hes improved since his antibiotics and iron tablets, I also worry about my Mum in all of this, she isnt well either, and they both live a hour away from me, I dont think they always understand what the doctor is telling the or what questions to ask. I try to go with them when I can
I am going to go with my Parents when Dad goes to Aintree to see if they will fund this drug for my Dad, but if they dont, can we go elsewhere to get this drug? Ive read and heard people pass away within months with this disease others live with it for years and years, can it stay mild for a good while then all of a sudden quickly progess? Does anyone have experience with this new drug?
Thank you in advance for reading.
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