I was diagnosed with Pulmonary Fibrosis last September.
I tend not to search about the condition on Google too much, the prognosis is not good and sometimes ignorance is bliss.
But after attending rehabilitation exercises I was determined to keep it up and give myself the best chance of leading a reasonable life for as long as possible. So far, so good. Though I realise things could change dramatically at any time.
I’ve not read many posts about people with the same condition and just wanted to see if there are any other sufferers around. I’d also like to give a little heads-up to a free online book I’ve found useful and hope it’s not against forum rules.
If you are on Facebook join the Pulmonary Fibrosis UK group - lots of people with PF/IPF, relatives of sufferers and carers. Very supportive, informative and lighthearted.
Thanks Angie. I’m going to take a look later today. I’m not a member of any groups on Facebook yet, up to now I’ve just used it for family and friends.
All being well (if I figure it out in other words) I’ll speak to you later.
I joined one of the Facebook groups..Pulmonary Fibrosis Support Group by Breath Support. But as you said in a previous post it seems mainly geared towards sufferers and carers in the USA.
Have you got the name of one that is more U.K. orientated ?
Hello RichmondBlue my husband has Pulmonary Fibrosis, he was diagnosed 3 years ago. The worst thing you can do is search Dr Google which was the mistake he made. He never reads the posts on here in case of bad news, but I always read them and tell him the relevant ones to help him. He is not doing too bad at present, still go out and about with friends. But this illness has changed his whole personality, we live in Spain and he was always very active doing various projects around the house. Now he has no interest in anything anymore, his hobby was learning to play the guitar, repairing watches. He no longer has any interest in any of these anymore, he just wants to sit on the terrace. He does exercises which I push him to do as we both know how important it is. As I said before we still go out for meals and entertainment with friends, but he hardly says a word. I feel I have lost the man I married which makes me very sad. Sorry to ramble on so. Sounds like you are doing OK, long may it last.
This is so sad to read Johnsel, that your hubby has taken this so badly and has stopped him from being the person he is. It could be a type of depression and fear making him withdraw from his everyday life. Is there any counselling over in Spain that could help. I do hope so, it must be difficult for you handling this on your own. Hope things improve for you both x
Hello again RichmondBlue The medical care here in Spain is excellent and they are doing all they can for John. He had been also seeing a psychologist for the last 9 months but he just gives John antidepressants and none of them seem to work.
My husband has severe emphysema and we both read Noah Greenspan's free online book a few years ago and found it very useful.
It's a great introduction to anyone new to lung diseases as it gives so much practical advice.
If you want to actually buy the book don't use the link as the packaging and posting from US makes it very expensive. It's on Amazon UK for paperback and kindle. All his YouTube videos are on his website or you can go straight to YouTube to watch them. He's a bit of a larger than life character but his advice is very sound.
Don't know much about PF but there are plenty of others on the forum who do and they'll be along soon.
Thanks for the reply. Yes, I did look at buying the book from the link given, but I think it was over $50 with postage and packing from the US.
As you say, I might look on Amazon and buy a paperback version. I do like his positive attitude, though his chapter on hygiene and avoiding infections seemed a bit over the top. After all, it didn’t do Michael Jackson much good in the end, did it ?
Hi Richmondblue, dont have any answers for you, but you seem to be handling things well and have kept a very good positive attitude. I am sure there will be plenty with this disease that will reply to you. Thanks for the link, it looks like interesting reading x
Thanks for the reply. Yes, I’m trying to stay positive but I do realise it’s very early days yet.
I think it helps in a way that my wife has been a type 1 Diabetic since she was 16 years old, needing to inject herself every day. My condition didn’t arrive until I was 73.
That has prevented me feeling sorry for myself. I’ve probably got off lightly, smoking and drinking for most of my life.
My husband was diagnosed withIPF in his lower lungs and emphysema in his upper lungs in July 2017.Everything was fine until January of this year when he went on ambulatory oxygen,six weeks later he was on LTOT 16 hours a day but his lung condition hadn't changed !! He is now 4 classes into Pulmonary Rehab ,is having an Angiogram on Wednesday and has now been told he has Alzheimer's with a significant decline in his memory,he has surrendered his Driving Licence and we are now looking to buy a wheelchair as he cant walk more than 10 yards.He is also type 2,diabetic for over 20 years and now going on insulin.I have been type 1 for 65 years.12 months ago he was fine and we had 5 cruises .No holidays now of course the insurance would be sky high.So do as much as you can while you are still able and make the most of every day.Your wife and I have gone through some memorable times and made us the strong characters we are.
Thank you for your reply. I’m so sorry to hear of the sudden change in your husband’s condition. Something like that must be terribly difficult to come to terms with however strong you are.
But I admire your philosophical approach to life, creating memories while you can. And as you say, the best thing to do is make the most of what you’ve got for as long as possible, you never know what is waiting around the next corner.
Anyway, thanks for the kind advice. And I do hope your circumstances improve as much as can be conceivably possible.
the best thing you can do is walk walk walk keep those lung streached i did not and had double lung transplant but walking as far as pos every day will help loads
I Am pushing myself to walk 3000 steps a .Day .Stats drop 85 on exertion ..Hoping get on transplant list before it’s too late .Retired Hoping to go on lots of Holidays .But not possible to fly now with the use of oxgen it becomes such a Hindrance.
Richmond, I’m sorry to hear you have been diagnosed with this awful illness. If you ever need any help and support there are two great UK charities - Pulmonary Fibrosis Trust and Action for Pulmonary Fibrosis x
Thanks LozzieC, I’ll make a note of those organisations.
It is a shock when you’re diagnosed with a condition that’s only going to get worse. But you just have to take all the advice and try to make the most of the time you’ve got.
Hi RichmondBlue, I was diagnosed with Pulmonary Fibrosis in 2007 after a diagnosis of Lupus in2006. The lupus which I had for some years before the diagnosis damaged my lungs.
I live a fairly normal life with the help of my friend and shadow ambulatory oxygen which I have been using since 2013. I had to ask the consultant if I could have the oxygen and I had to go and be tested to see how much I would need per litre a minute.
I go on cruises and last year I flew to Jamaica for a holiday. I went with TUi who supplied the oxygen I needed to use on the plane for free.
Your life is over yet, exercise by doing the things you did before the diagnosis. I go to church and I sing, I go and do voluntary work when possible.
Hope this help, I will pray for strength and peace for you.
Hi Maureenpearl, thanks for your reply and kind words.
It sounds like you are beating the odds which is great..and encouraging. I’m already using oxygen for exercise, but so far haven’t needed it for everyday tasks.
I’ve been wondering about flying. We cancelled a holiday to Barcelona last October because I was declared unfit to fly, but that was immediately after diagnosis and I was unprepared and still a bit shocked.
I’m still working on a part time basis, only about 12/15 hours a week. It’s among people I’ve known for years and it helps keep the mind alert. Your singing must be both enjoyable and good for the lungs though, sounds great.
Hi RichmondBlue, I had to have a fit to fly test done to see how much oxygen i would need during the flight.
The insurance was difficult to get and a few quote £4000 so I went without insurance and thank God he got me there and back without any medical intervention.
You could try another fit to fly test for a holiday or try cruising to the Med.
Hope it all work out for you and you will live many more years.
Hi Maureenpearl, yes I’m expecting a frightening quote next time we try to take out insurance. I already have Atrial Fibrillation and take Warfarin etc which counts against me in any quote.
My wife is a type 1 diabetic as well, so the insurance would be likely to cost more than the holiday.
Might just take a chance like you say, but will the airline supply you with oxygen for the flight without insurance ?
Anyway, we’ve decided that the Isle of Wight will have to do for this year. Off to Shanklin for a week at the beginning of August.
The airline does not ask for insurance but I think it's only long haul that you get the oxygen for free. If you travel to any of the countries in the Euro you will be treated for free if you have a EHIC card but it's the flight home you will have to pay for if you were to miss your flight because you were taken ill.
Hope you have a wonderful peaceful time in the Shanklin.
Thanks Maureenpearl, I’ll bear that in mind and make some inquiries when/ if we decide to fly. I guess Brexit could change things around Europe as well ?
I Have been suffering with IPF with 6 years from first diagnosed .Last few months on oxygen and more out of Breath doing the normal things .So Frustrating .
Hi Guvernor. Are you now needing oxygen for more general everyday living ? That must be frustrating if you’ve been active without it up to now.
I was advised to carry it for walking, shopping etc but so far seem to be managing just using it for strenuous exercise, going to the gym etc.
But although they’ve been very good with rehab etc, the team at the clinic I attend have been pretty vague about oxygen. Great delivery service, but the usage seems pretty much up to me. Is that normal ?
They advised me to use it on exertion .I have been reluctant to use it in public .I manage slowly to get about so far .This hot weather has been a struggle .Its only late evening i manage to get about .
My father had this condition and led an active life. The key is to stay active and follow your doctors advice. He sadly passed a few years ago but not from the PF.
He initially was on oxygen therapy 24/7 but he was able to only have to use it at night. PF did not stop him from enjoying what he liked to do.
Remember to stay active and on top of your overall health.
I’m certainly going to try to give myself the best chance possible to lead a reasonably normal life for as long as possible. I’m probably doing more exercise now than I’ve done in the past 30 years or more.
But it is a nasty, insidious condition and I’m under no illusions. Things could change at any time.
Leon,you sound like a very level headed and sensible person and a small amount of googling never hurt anybody with such qualities.
You will find that there are two main drugs used to try to halt the progression of fibrosis, pirfenidone and nintedanib.often you are offered one or the other but recent trials have indicated some success with taking both and it may be well worth while talking to your consultant about your treatment plan,something i imagine or hope you have had the opportunity to do already.
My wife had IPF and i decided to put some effort into researching the condition,under control and with the proper health and exercise regimes recommended many people have lived near normal lives for a good many more years than the standard prognosis.
You obviously enjoy travelling and may i suggest the purchase,perhaps of a well maintained and serviced second hand portable concentrator if that is suitable for your ambulatory oxygen requirements and can also be used on short haul flights such as the flight to Barcelona.
I am on level 2 oxygen on exertion .I am seen my consultant t Moro .He seemed to say last time I saw him a portable Concentrator was not suitable for Ipf ..I am hoping to convince him it would be of benefit to me .I want to visit family either by car and boat or by flying .Any thoughts .Be easier than trying to arrange oxygen where ever I go .
There is no reason that i am aware of why somebody with IPF and already in receipt of ambulatory oxygen therapy could not use a portable concentrator unless it was unable to deliver the required rate of litres per min.Although possibly some people could not adjust to pulse breathing.i would definitely ask him for the reasoning behind his argument as if you say you are on level 2 i presume you mean 2 lpm and there are many portable concentrators available that will deliver up to setting 5 which is more or less 5 lpm.
However,i would imagine that he may be indicating that their usage for LTOT would not be very practicable given their short battery life and also most are not suitable for sleeping overnight which often requires continuous oxygen delivery.
Regards Ski's with the disclaimer that i am not qualified to give this advice and only your oxygen prescriber can safely do that.
Thank you for your reply .Will keep it in mind when Talking to him .He said people with Ipf take short breath s and concentrator would not give enough oxygen on pulse ..Will put up an discussion .Would Be of Benifit to me I know for Traveling . Just seems so hard to get any where with some consultant s
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