Hello I am new on here

Hi I am Michelle, I am 46 years old and have been diagnosed recently (april) with ipf. I am on 24/7 oxygen 2l sat 4-6l moving. I am also on a 3 month course of prednisolone to see if it will reduce the inflammation I have. I am waiting for a lung transplant assessment appointment from Newcastle and would love to chat to anyone who maybe going through or has been through this procedure.

hugs

Michelle

17 Replies

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  • Welcome to our family on BLF Mitchypoo ! ( what a great name - it made me chuckle.) Anyway,I don't have IPF but lots of folk on here do and I'm certain you'll soon have replies flooding in. Hope you are having a good weekend.

  • Welcome to this site. Everyone here is very helpful and supportive. There are many members with IPF:: it has to be one of the nastier lung diseases. There are those who are on the same journey as you. What a tough time you are having. Everything I have heard about Newcastle sounds brilliant. I do hope your appointment goes well, with a good outcome.

    All the best and keep us posted about how things go.

    Love

    Kate xx

  • Welcome to the forum. I have Emphysema but just wanted to welcome you.

    Kim xx

  • Mitchypoo a big welcome to the site and good luck the hospital visit x

  • Hi I am new too I am 62 and on oxygen 20/7 well I try for 20 but don't always make it ....I have COPD and heart failure aggravated by the fact that I lost my right lung from cancer nearly 11 years ago.... been fine up until this year when I keep getting rapid heart beats and very very low oxygen levels in my blood .... just done 2 weeks in and am on 2nd week out so hopefully things will settle down x

  • Hi and welcome to you both, make yourselves at home xx

  • Hi Michelle, I was diagnosed with IPF 3 years ago. My lung function was decreasing year on year but has recently stabilised. I am not yet using oxygen so am in a better state than you. I have been to Newcastle recently to talk to Professor Fisher about transplant but am not yet bad enough for the assessments to be carried out. I have another appointment at Newcastle in 6 months time. To reassure you, everyone at Newcastle was lovely and their transplant success rate is higher than the national average. Professor Fisher is very easy to talk to. Good luck with your appointment.

    Helen

  • Thank you for your reply Helen. I have probably had IPF for two and a half years now as that is how long I have had symptoms. My first consultant diagnosed me with bronchieactasis about two years ago, but in november last year i was getting worse and I didn't feel as if i was being listened to. So I went back to my GP and he referred me to a specialist at Sheffield hospital where I got my correct diagnosis and they have been brilliant in the care they are offering and hence my referral to newcastle. Would you mind telling me how long you waited for your first appointment at Newcastle?

    hugs

    Michelle

  • Hi Michelle, I waited around 4 months but I wasn't an urgent case, so hopefully you will be seen quicker than that.

    Helen

  • Thank you all for your warm welcomes, I have had a good look around and have found the forum very positive thinking which is defiantly what I need right now. I look forward to making good friends to share experiences and journeys with.

    Hugs

    Michelle

  • A very warm welcome to you. cx

  • Hi Mitchipoo,

    I was diagnosed with IPF in June 2013 and attend the Northern General at Sheffield. This Hospital is a Centre of Excellence for Lung Disease and I am very appreciative of the care which they have given me.

    I am not on oxygen but since July 2013 I have been taking a relative new Anti-Fibrotic drug called Pirfenidone which helps to slow the progression of IPF. You need to enquire if you fit the criteria to receive this drug which is not suitable for everyone.

    In addition to Pirfenidone there is another new drug called Ofev which tackles the progression of the disease in a different way.

    In the meantime keep positive, you have dedicated team of people looking after you and all the best with your review at Newcastle.

    Benji.

  • Hi Benji, Thank you for your reply, I have not heard of these drugs i will have to have a read up on them. At the minute i am on prednislone 30mg a day for 3 months to see if it stops the inflammation getting worse. How have you found the medication does it make you feel better and how is your shortness of breath? I am back at the northern general later this month i will mention it to them.

    Hugs

    Michelle

  • Hi Michelle,

    As far as my SOB is concerned it is relative to my over exertion.

    I avoid more than 2 flights of stairs and walking up steep hills. I try to take a brisk walk most days and keep as active as possible.

    Once you are stabilised you should consider doing a course of Pulmonary Therapy which was beneficial to me and the Hospital's Interstitial Nurse will give you guidance on this.

    My last CT Scan earlier this year showed no progression of fibrosis compared to the one taken in 2013 before starting on Pirfenidone.

    All the best

    Benji

  • Just wishing you well not as bad as you and made it to 58 before suffering repeated infections and other shitty effects of Bronchiectasis. I'm seeing consultant soon and worried he'll say I'm able to work again. Cos know I ain't same at all!!! Wud rather be poorer and alive. Hope your assessment goes well. All the very best love! Take great care of yourself !!! 😘

  • It is with great sadness that I must inform you as Michelle's husband that she was snatched away from us on the 17th August. I'm so sorry to be the bearer of bad news on such an up beat positive forum but feel I have no choice, she would most certainly have wanted you all to know x i will be asking for donations at the funeral, all of which will be forward to the BLF xx God bless to you all, and may I take this opportunity to thank you all personally for giving Michelle some hope and positive thoughts..

    Kindest regards Paul xx

  • Thank you and sorry for your loss.

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