Pulmonary Fibrosis :: It Seems Little Is Known About IPF

My partner was diagnosed with IPF in June 2015 when he had terrible breathlessness, horrendous coughing and had lost a stone in weight. For the previous 9 months he was told he had Bronchiectasis. He is now 74 and was always a very fit man working as a part time gardener and going to the gym weight training and running until April 2015 when the breathlessness stopped him. He was referred for a CT scan and an appointment with a consultant. 5 weeks later he had the scan and 6 weeks later saw the consultant. By this time he struggled to walk farther than 20 yards. The consultant arranged for various tests to be done and said he would see him in 6 weeks. He would not give him any medication.Once the tests were done my partner was feeling very ill so I requested an earlier appointment with the consultant, he then required further tests based on the reults of the first ones and would see him in 6 weeks.Time is now marching on and he is quite ill and then he was told to go into hospital overnight as they thought he had a collapsed lung, which he didn't and he was then referred to a specialist and the appointment was 6 weeks later. At this appointment he was put on home oxygen and pirfenidone. 2 months later he had an appointment with the consultant who then said he would see him in 3 months.He has now lost 3 stone in weight, has no appetite and says food tastes like cardboard.We have not been given any support or contact for when things get worse. The pirfenidone does not appear to have made any difference and he is now on oxygen 24/7 and struggles to walk to the cloakroom - about 18 feet. Nobody told us anything about the disease, what to expect etc. At Pulmonary rehab he learned home exercises which was good and I mentioned to the nurse that nobody had explained the disease to us and she gave me a booklet from the BLF to read, something we could have found on the internet.

Last Sept/Oct my partners brother was told he probably had IPF and we told him to keep pushing for appointments in order to get Pirfenidone and not hang about for 6 months like we had to. In January he was referred to a specialist and in early March he was assessed for oxygen. This morning sadly he passed away without seeing the specialist and still not having oxygen.

Why does everything take so long. If you are diagnosed with lung cancer you are usually being treated within about 6 weeks not 6 months.

My partner insisted on being referred for a lung transplant as he saw a story on the BLF site of a man of 71 with IPF, always been very fit and healthy was given lungs and is still going strong.When we went to the specialist hospital it was all negative, too old and no tests were done and they even denied that the op on the 71 year old was carried out in their hospital. When we got home I emailed the story to them but they did not reply.

Everyone should have a chance of life.