I am 84 years old and in generally good health - apart from the following!
I have Idiopathic Pulmonary Fibrosis, first diagnosed in 2013. My breathing only started giving me difficulties in 2017.
At the beginning of 2018 I was put on nintedanib, then in July 2018 I had a stroke. This was a simple stroke i.e. it's main effect was to paralyse the left side of my body. However this is a complication I could do without as the symptoms of IPF get mixed up with the after effects of the stroke. The recommendation of the stroke people regarding exercise is not to fight the post stroke fatigue that affects me still, but IPF wise I need plenty of exercise.
I have recently been issued with a fairly hefty oxygen concentrator, instigated by my GP, but a recent visit to my hospital consultant suggested that it would be more appropriate for me to have an ambulatory device. I await developments.
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modelrailway
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My goodness, what a time you've had. It must be such a challenge to have undergone all of that. I'm sorry I don't have any good advice, but I just wanted to say hello and I'm glad you found this forum. Take care.
Hi modelrailway and a very warm welcome to you 🙂. I am sorry to hear of all your struggles and hope you get the ambulatory 02 sorted soon. You might want to ask doc for a referral to pulmonary rehabilitation, where you will have supervised excercise.
Welcome to you modelrailway and hope things get sorted out very soon. Take care xxx
Hello and welcome modelrailway! You've certainly had a tough few years there- I do hope that you manage to get an ambulatory device sorted out soon and that 2019 turns out to be a more stable year. x
Welcome modelrailway, You will feel the Love on this Forum, someone here will have IPF and will offer you there experience. I too am on Ambulatory 02 for Mobility, and the Concentrator for home. (COPD). Enjoy all the Lovely Comments. xxxxx
Hello modelelrailway and welcome. I too have IPF and was also first diagnosed in 2013, and have seemed to have followed the same pattern as yourself. I am 76 and it was the cardiologist who first commented on the crackling in my lungs and suggested I ask the GP to refer me to the lung specialist. I had been getting a persistent dry cough for a few years each winter/spring and in each of the previous 4 years had had a chest xray which had shown "nothing". When the lung specialist looked at them he immediately suspected IPF and sent me for various scans, etc. and concluded I did have it but was a "slow-burner". Like you, the breathing started getting worse in 2017 and the lung function tests showed it was time to try the magic pills. To get these I had to transfer to a different hospital miles away but it was found I could not tolerate either, so earlier this year was transferred back to the original consultant and the onto oxygen in August. I did it the opposite way to you out of choice but recently swapped from the tank plus thermos to the concentrator because it is lighter to carry and also does not give me nosebleeds like the other system. The nurse said this is not unusual as it is a less intense flow. They have at present left the tank with me as well for a few months to see how I get on but warned that in time I will have to switch back as my symptoms are getting worse - we'll see! Hope they give you the same options.
Hello from New Zealand. I have IPF diagnosed four years ago. I am at the stage where my specialist is talking drug therapy but I am held back by the side effects. I am not yet on oxygen. I am an 80 yr old widow always been sporty and never smoked.
I will be interested in your progress which I hope will be positive. Every good wish for easy management.
Hello and a warm welcome to you modelrailway, what a hard time you have had, do you have family that live near to help? I hope so coping on your own after a stroke is hard. Lets hope you get sorted with the ambulatory device and things settle down. Heres hoping you have a good 2019. Irene x
Welcome to the group modelrailway . We oldies tend to confuse the medics with our multiple ailments mixed in with our age related problems, but you seem to be battling on successfully. I try to avoid discussing ailments, there are plenty of others on the group better placed than me to do that, but I'd like to hear about why you call yourself by your chosen name. 🤔
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