New kid on the block

I'm Sonny22 i became a member of your community in July after being diagnosed with Idiopathic Pulmonary Fibrosis and Pulmonary Hypertension my condition is moderately severe. My consultant has told me that not many options are open to me, oxygen to help my breathing and Perfenidone/Nintedanib to slow the progression, because of my age (76) a lung transplant is unlikely although I am a young 76. I see my consultant again next month. I was wondering if this is familiar to other members of the community who suffer with IPF any help and/or advice will be appreciated.

Thank You

22 Replies

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  • Evening Sonny. Bit of a bummer. I do not have IPF, but I do have a fibrotic airways condition, Obliterative Bronchiolitis. I also have a pulmonary vascular disease: Chronic Thromboembolic Disease, which is causing mild PH. Both of these were caused by PEs, six yeas ago. Like you I think there will not be much that can be done. I am seeing my consultant on Friday. I was going to float the idea of my trying Perfenidone. If it works for PF patients in slowing down the fibrosis it might work for me? There have been some trials using it on OB patients.

    I think these fibrotic lung diseases are nasty buggers. You are not alone, though. There are several here with IPF.

    Have you been offered Pulmonary Rehabilitation? I started the course but had to give up, i think the PH was making my symptoms worse. Have you talked about exercise wit your doctors? PH can be tricky, although everyone would encourage you to do as much as you can I think it might need to be monitored closely.

    I can only offer you the cliches, (which are cliches because they are true!): take each day as it comes, enjoy the moment, make the most of your precious relationships, and learn to pace your self.

    All the best,

    Love

    K xxx

  • Thank you Katinka I do excercise and apart from the obvious am still reasonable fit played golf three times a week until recently and I am a positive person. Thank you for your encouragement . Sonny

  • What I did mean to stress, but it was a bit late in the day for me, and I was not quite with it. This is a brilliant forum. The members are well-informed, wise, funny and massively friendly and supportive. You have come to the right place.

    It's great you are so active, that will help you immensely, both physically and mentally.

    K xxxx

  • I have followed the forum for a few weeks now and have been massively impressed with the friendliness and knowledge on the forum the information gleaned is top class, good luck to yourself on Friday.Best Wish's

    Sonny XX

  • Good to meet you, Sonny. I don't have either of those conditions but I know they're not nice. Your golf and your positive attitude will, I imagine, be advantages in fending off any deterioration. We've got a few others here who are in a similar boat, maybe they'll be along. Or you can put pulmonary fibrosis in the search box and find previous posts.

  • Thank you Hanne and pleased to meet you I will do a search and see what it produces I am on a big learning curve at the moment and it is surprising what comes to the surface, thanks again and Best Wish's

    Sonny

  • Hi sonny 22 my husband was told he has ipf caused by pneumonia and statins last year. He has been a groundwork contractor for 48 years and still works every day but is only in the office nowadays. His consultant told him next to nothing about what was wrong with him or what to expect so it came as a shock when we looked it up. She didn't even tell him it was incurable. He has got worse over the last year. He is 71 and has never smoked and was never I'll till he got a cough that wouldn't go away. the consultant has never mentioned to him about a transplant. He coughs a lot and sleeps a lot but he is strong in body and spirit and fit so I suppose it could be a possibility. I hope so. I hope things go well for you and you get the chance to have a transplant . Take care.

  • Many Thanks for your response e2dye your husband and I have something in common I had pneumonia whilst on holiday in Australia (that's a whole new storey in its self) last January and I also take statins although my consultant never made any comment, I begin to wonder if this is common with others who suffer with lung related issues. Thanks again and Best Wish's.

    Sonny

  • Hi sonny. My hubby took statins for years and he got a cough that wouldn't go away an was coughing badley. Doc sent him for X-ray and he was told there was spots on his lungs. He then see consultant and had a MRI and he had noudles and what they called 'ground glass ' areas in his lungs and scaring caused by pneumonia. He didn't even know he had pneumonia !! She told him to stop taking the statins and he had another MRI 3 mths later and the noudles had gone ! But the other areas hadn't. They were still there a year later. We realised we both had pneumonia at the same time when we thought we had a bad virus. It was the only time he had been ill. I also have lung damage but have been asthmatic all my life. I read a post that said the upper age for transplant is 65 so I guess that will count him out 😔 Best wishes .

  • Hi e2dye sorry I had to brake off our conversation this morning but I was due to play crown green bowls this afternoon for my club our last game of the season could not help ponder if i will be fit enough to play next year anyway I digress, we was talking about statins and pneumonia, I too have a nodule in my right lung which the doctors can't yet determine I've to have another CT scan soon to assess any progression. In November last year I had what thought was a heavy cold as I had booked a flight to Australia for January with all the arrangements made off I went still suffering with a bit of a cold (I thought) arrived in OZ land (Melbourne) feeling awful no problem I was told jet lag you will be ok in a couple days, to cut a long story short after four days I was in medical centre having X-rays . Pneumonia Bacterial advised to rest up for the rest of the holiday take the antibiotics and drink plenty of water. Take your X-rays and medical notes back home with you and see your GP asap the rest is history as they say, so could Statins be a contributory factor? mmm worth a discussion.

    AH I feel better now that's off my chest( sorry for the pun)

    Take Care. Sonny

  • hi sonny you have had a rough time of it. I don't know if statins have caused your noudle but I would ask your consultant. Do you still take statins ? My hubbys noudle went when he stopped taking them but he still has ground glass areas 18mths later. He has another MRI in Nov. Let's hope you can still play bowls next year 👍

  • Thanks e2dye, I am still taking the statins but my mind is now working overtime I will have a long think and then discuss it with my GP, I truly hope all go's well with your husbands MRI will keep my fingers crossed for both of you, with me having to cut back on my golf my bowling is going to be my main activity next year so fingers crossed.

    Take Care. Sonny

  • #Sonny22 Hi I'm 48 with copd and sarcadois emphysema pulmonary hypertension oxygen 24 hr take it every where I go waiting for treatment center to contact doc for evaluation for transplant Hang on in there

  • Thanks Six and nice to meet you, I hope you hear from doctors soon and the news be good you take care and have a good day.

    Best Wish's. Sonny

  • Hi Sonny, I was diagnosed with IPF 3 years ago. I haven't got pulmonary hypertension yet but am showing signs of right heart strain, so it's probably just a matter of time. You are correct in your summary of the options. I don't know if you are in the UK, but here, the upper age for a lung transplant is 65. I think this is due to being fit enough to survive the surgery and post operative treatment and also, the limited number of organs available for transplant. I am in my 50s, so a transplant is still an option but I am currently too fit to go on the transplant list. I am taking Nintedanib and in the trials this was effective in slowing the progression of the disease by around 50%. My best advice to you would be to avoid chest infections as these can cause permanent damage. Try to keep as fit as you can and don't worry about life expectancy - many of us are now defying the published statistics.

    Take Care,

    Helen

  • Many Thanks for your response Helen may I say how pleasing it is to hear from someone who was diagnosed with IPF three years ago remains so positive that alone has lifted my spirits no end, I try not to worry about life expectancy but will admit it is at the back of my mind, I am resident in the UK in the Derby area if you say the upper age limit for a transplant is 65 then that rules me out BUT rules can be broken so I will play on the fitness factor and see where it leads us to bearing in mind life's disappointments. Thanks for the advice regarding chest infections I will take that on board. Nice to meet you Helen. Best Wish's and Take Care

    Sonny

  • Hi Sonny, I'm glad you're feeling a little more positive. I've had longer to get used to the diagnosis than you and hopefully, as time passes, you will see that you can manage this disease. You sound like a fighter and that's good. Ask your GP about pulmonary rehab as that can also help.

    It turns out that we are quite close geographically as I live in Nottingham and used to work in Derby. Small world!

    Take Care,

    Helen

  • Hi Helen I am seeing my doctor next Wednesday I will ask him about Pulmonary Rehab in a few words what do's it entail? and I see my Consultant next month are there any specific questions I should be asking.

    Thank You. Sonny

  • Hi Sonny, pulmonary rehab is a mixture of an exercise class and information sessions. Most people there will have COPD, so not all the information is relevant if you have IPF, but some of it certainly is. The exercises are aimed at improving your fitness and stamina and improvements are measured throughout the course. The main thing to check with your consultant is whether you are eligible to take Pirfenidone or Nintedanib, which hopefully you will be (it depends on whether your lung function is within a certain range). You also need to make sure you have contact details for the respiratory nurse (will support you with any problems between consultations) and details of any support network meetings.

    Hope that helps.

    Helen

  • Thanks Helen should have mention that I've had a lung function test and was just over the threshold but because it was very close they are going to retest me before I see the consultant next month. Again many thanks for your help and advice.

    Sonny

  • Hello Sonny22 .

    I have the same condition as Katinka. So not quite the same thing as you have. I just wanted to say hello and so glad you joined up. This is a marvellous place to be. A great support to be sure.

    Take good care.

    Cas xx 💐🌸🌹

  • Hi Caspiana nice to meet you and thank you for the welcome, I am certain I will enjoy the forum and hope to positively contribute to it in return for the good advice and best wish's I am already receiving . Thank you Cas and all, have a brill day.

    Sonny

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