New IPF sufferer

Hi everyone I have just been diagnosed with IPF I have been researching this on the net but hope to be able to chat with other people with the same condition. I live in Auckland New Zealand but am British and travel on a British passport I have a wonderful loving husband who also British. I find the whole diagnosis quite frightening thus wanting to chat to similiar minded people Thank you so much for taking time to read my post. Warm regards.

30 Replies

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  • Hi

    Welcome not my condition but some reading for you.

    nhs.uk/conditions/pulmonary...

    Others will along with first hand experience.

  • Thank you so much Stone Will have a good read from the site you sent to me Kind Regards Trudy😊

  • Welcome and just wanted to say hi. Hope someone comes along who can discuss IPF.

    Best wishes to you. Xxxxx

  • Thank you Sassy59 I appreciate your welcome Stay strong 😊xxxx

  • Hi there!

    You don't say how old you are or what your condition is at the moment. I was diagnosed with IPF when I was 55. I am now 59. I managed to carry on working for 2 years after diagnosis but retired on ill health grounds a year and a half ago. I was a head teacher so things were pretty full on and I just didn't have the energy to keep going. Over time, my energy levels have gradually decreased but so far, I am not using oxygen but I do have to take things easy. Currently, I take Nintedanib to slow the progress of fibrosis and I am at the early stages of looking at whether a lung transplant is the way to go.

    Please get in touch if you have any questions and do let me know how you are.

    Take Care,

    Helen

  • Ho Helen I am 69yrs old in March I appreciate you getting in touch I get out off breath very easily and have pain between my shoulder blades I cant make the bed or walk stairs easily In NZ Pharmac doesnt fund the drug you are taking - shame Have a lovely day Please keep in touch Where are you based 💋xx

  • Hi Scottie-gal,

    I am in England. I have lived in Nottingham for many years but am originally from the north west of England (close to Liverpool). I'm guessing that you are from Scotland originally? The weather in New Zealand will be better for your condition than the UK. Shame that you can't get Nintedanib. The other drug available for IPF is Pirfenidone. I don't suppose you can access that either. Both drugs have only recently been authorised in the UK so hopefully they will be authorised in NZ at some point.

    Helen x

  • Thank you Helen None of those drugs are here as NZ is such a small country I doubt if they will fund the drugs in my lifetime Stay strong 😊

  • oioi welcome i had ipf and had tansplant in march anything you want to know plz ask

  • Thank you so much Sibkev How do you feel now after transplant?

  • very well just got back from walking dog about 2 mile

  • G'day Trudy

    Welcome to the "family".

    I reside in Victoria Australia (Just across the ditch).

    My wife Susan had... yes had... IPF... but thanks to a donor she received a bilateral lung Tx last July.

    Susan was diagnosed in May 2014 and made the Tx wait list in May 2015.

    We have had a rough journey, but now 6 months post transplant, things are looking pretty good.

    I have journal-ed our time since the diagnosis, and have learned so much about this beast of a disease.

    If you feel the need to chat please keep in touch.

    Either Susan or myself will give you any info that we feel may help you, if you wish.

    The 2 things you need to do if not already started

    1. Stick to a healthy diet

    2. Exercise...not the gym type but those which will keep your lungs working to their maximum.

    Are you under the care of a pulmonary specialist, or a hospital??

    Are you on o2 ?

    Have you had a lung function test? (Spirometry)

    Are you on any meds ?

    We know that folk from NZ are or have been accepted onto the wait list at the Alfred hospital here in Melbourne.

    Best wishes

    Will

  • Thank you so much Will for your help I am not on oxygen yet but have been hospitalised with oxygen I was diagnosed just Fri gone and it has been a big shock I and my husband Ian thought inhalers or steroids and I would be fine dah!! I do swim and will go to lung clinic I think I am still in shock I wish your darling wife wonderful things in the future Warm regards Trudy 😊

  • Thanks Trudy

    If I may suggest

    Purchase a finger oxymeter, they cost around $20...$30 dollars (Don't waste your money on an expensive one) You can pick them up on ebay or a pharmacy (The latter will probably charge more).

    Keep it handy and also have a note book to record the results.

    Susan used it when she had S.O.B (shortness of breath) This will tell you how low your oxygen levels are falling. Also write down what you were doing when the S.O.B started.

    Also use the note book to write questions that you may need to ask the Dr.

    We found in the early days that after leaving the Dr we had forgotten to ask some questions.

    Please keep in touch

    GOD Bless

    Will

  • Good advice.

  • Thank you guys I will take everything on board and see how I go I wish you both all the happiness in the world You will probably see me asking questions as I go along Thank you so much Trudy😊

  • Sorry you also have this condition. Have had same for 3 years so I'm now past that initial scary stage you must be at right now (it really does ease as time goes on). I found the hardest things to cope with at the start was the lack of any good information or advice about the disease. Also, living on a fairly remote Scottish Island, there are no IPF support groups. However, have since found this site and the American one to be very helpful. If you have not come across the American site this link takes you to it and a very good article for "beginners"

    inspire.com/groups/living-w...

    It contains some excellent links and advice (get a pulse oximeter if you don't already have one). Has some folk from NZ - this article talks about Pirfenidone in NZ

    inspire.com/groups/living-w...

  • Thank you Salmo I will take all you have said onboard. I appreciate it very much I am at that scary stage but I am pleased it does pass Kind thoughts Trudy😊

  • If you are on Facebook there is a very good group called pulmonary fibrosis uk , lots of help from fellow suffers there.

  • Thank you nigelp I will look into that It is nightime here and I am off for my rest Very tired at the moment 😊

  • Hi Scottie-gal and welcome, I also am a sufferer of IPF and associated PH I was diagnosed last May and thought my world had come to an end but with the help of family, friends and members of this wonderful forum life now seems much rosier I still feel crap but now it's more happy crap (no jokes please) live about 15 miles from Derby but was born and bred in Bootle Liverpool been living down here some 50 years now but still have my scouse accent, I received some excellent advice from members one was Helen who has already spoken to you I think, others as well have been an insperation to me and I can't thank them enough. Had a little bit of a knock back last week was due to start on Nintedanib but another problem has cropped up and now I'm having to have a CT Abdomen scan at the Queens Hospital Nottingham in two weeks so they are delaying start of treatment in case there are other issues so it's fingers crossed again. What is the medical situation where you are do you have problems obtaining your medications, are they readily available I know when I took Ill out in Australia last January in Philip Island Victoria it was not a problem, well I hope you enjoy your stay on the forum. Take Care and Best Wish's

    Sonny X

  • Hi Sony lovely to have your welcome. Here in NZ we are not funded by Pharmac for any IPF meds I am still in early stages with IPF so dont know what the future holds for me. I can only hope that Pharmac comes to the party in some way regards Trudy 😊

  • Hi Scottie gal, my name is Linda,I was diagnosed with pulmonary fibrosis in 2015 . My lung function as got worse over the last few months and I've not yet been offered medication, but my consultant explained that while some people are given these drugs that can help slow down the condition it does depend if they know how you got IPF. Mine has come about because I have rheumatoid arthritis and the rheumatoid nodules have grown in my lungs causing thickening and scaring. Apparently they don't know if the same meds slow this kind of pulmonary fibrosis down,but there is a trial maybe due to start towards the end of this year. I think we need a lot more research into any IPF diseases. Take care Linda x

  • I am in the same boat Lesley_ann I het very tired and cant do much as I get very breathless and my chest hurts Lets hope here in NZ they fund some sort of meds for people like us Thank you for getting in touch My scaring is from lots of chest infections Warm regards Trudy 😊

  • Hi Trudy, yes I've just had an awful weekend,just lately I seem to have to have a sleep within an hour of getting up and then that carries on for the day. I spend time with my family less now than I did when I worked because I'm always asleep ! Linda x

  • It is awful isnt it Linda It is midday and I have just had my shower Where do you live and how old are you I am 69yrs in March Are you on oxygen Thanx for chatting Linda xxx

  • Morning Trudy,

    in fact very early morning, I'm in UK so it's just gone 4am here, but as we know having these kind of illnesses kind of alter your 24 hour body clock so chancers are I'll be back asleep when you are at some point today ! I am 58 in June Trudy though right now feel like 88 !!

    As you have probably researched we ,well here in the UK aren't usually diagnosed untill this awful disease is already in its stride as most people don't get many symptoms for quite a while. I actually started getting breathless and pain in my chest and shoulder blades about 4 year's ago but all the doctor's put it down to rheumatoid arthritis in my breast bone. I think its so easy to blame symptoms on existing conditions. I am seeing my consultant early March where we are talking about a possible lung biopsy and starting on oxygen.

    I also have a very supportive family Trudy, which I think makes us extremely lucky. I live with my husband, our daughter who is 17 and studying her A levels,also as I had a really bad few months since last spring our youngest son( 31 ) and my future daughter in law moved back home with us so I've always got someone around as they work shifts. The lovely thing is as well, our eldest son ( 34 ) and his wife live across the road from us and they have just had our first grandchild, a beautiful little girl caller Genevieve who as just turned 9 week's old.

    It's lovely having a chat, it's almost like when we were younger and you had pen pals...... just a modern version ! Have you been living in N.Z long and where in the UK do you come from?

    Speak soon hope you have a lovely day. Linda xx

  • Ho Linda yes I know about the pain in between your shoulder blades and behind your breast bone. I am Glasgow born but lived in York, and Ipswich Came to NZ in 1974 We are coming for a visit to my sister who is in the Cotswalds We have booked flights for June Just out of interest were you ever a smoker I did 30yrs ago Have a good day I will be trying to put a chicken shnitzel together for dinner with salad I should be fine as I have been very lazy today Luv Trudy x

  • Sounds lovely,thats what I have struggled with Trudy,learning to pace myself so I don't over do thing's but I'm getting better since I stopped working. No I've never smoked, but this is one disease that it doesn't really matter if you smoked or not. I know for me being around certain chemicals irritates my lungs like body sprays and hair spray.

    What a coincidence, my future daughter in law originates from the Glasgow area and my niece is in York after going to university there, I love York and the surrounding area. Also we have just booked a cottage for myself and daughter, daughter in law to be and my 2 sister's and niece ,a girly weekend. In June,in the Cotswolds ! In Minster Lovell near Whitney.

    Enjoy the rest of the day, I am going to be logging off shortly as need to recharge and I think after having a lovely chat I can sleep a while before the rest of the household is up xxx

  • Yes try and get some more sleep Linda you will be better regarding your strength I live with my husband and we have two sons Steve the oldest has a lovely little 2yr old named Chelsea Amelia The apply of our eye Nite nite lovely lady We will catch up again soon xx

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