Hi everyone I will apologise in advance for this moan! My health has definitely become worse this year & I catch myself thinking next year I’ll do whatever then thinking but I might not be here then! This illness is limiting because I don’t know how quickly I’m deteriorating or how much time I have left! So how to deal with this? Any tips please x
Ipf/emphysema : Hi everyone I will... - Lung Conditions C...
Ipf/emphysema
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Looseloafers
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So sorry Looseloafer,
This page may help you, there are links to other information and possible there could be telephone contact with a group in your area.
blf.org.uk/support-for-you/...
Hope this helps
Perhaps for now just do whatever you think you can, do things that you enjoy, crafts, reading, music, tai chi, humour, there are lots of free courses and loads of videos on you tube that may be of interest to you to keep your mind occupied and your enjoyment levels high.
You can of course call the BLF helpline during the working week for additional advice and support.
blf.org.uk/support-for-you/...
Best wishes to you
Thanks so much for your reply I do try to be upbeat but it’s hard sometimes. Good luck to you x
No apology necessary Looseloafers, I’m sure others feel as you do sometimes. This has been a very strange year.
I always encourage Pete just to focus on what he can do and make the most of each and everyday. I do wish you well and we’re here for you if you need to chat.
Take care xxxx
I seem to be unable to do more things every day 🥴🥴 but will keep trying. Hope all is ok with you and Pete x
Hi Looseloafers. Sorry your health has not been too good this year. I think, like the other replies, just focus on doing what you enjoy and take it day by day. To some extent we are are all in a similar position. Enjoy what you can today and let tomorrow worry about itself. Good luck my friend.
I am trying to take each day at time but keep thinking of things I used to do 😡grr! Daft I know xx
I can get the same way somtimes allthough my illnesses are different to yours. I try to plan things i can do. Stuff the house work i only have enough energy to go out to lunch with a friend. It realy is not good to think you may not be hear next year because you well may be hear. Plan ahead half the fun of doing stuff is in the planning but remember do what you can today phone a friend for a chat invite somone over for a cuppa ( observing currant rules.) Watch a favourite film. Phone BLF for some advice and help. Read one of Dom"s poems always makes me smile.
No one knows if they will be here next week, let alone next year. My dad had emphysema, thrown out of the army because of his cough, would give us away to the enemy.He worked as a bricklayer TIL retirement, died aged 79 at home in his own bed. Always active, enjoyed a drink, not a bad life, except for a poverty ridden childhood, but that was early 1900s. No help in those days. Love I ris x
I know I must stop feeling sorry for myself! I have so much to live for xx
It’s so frustrating isn’t it. I really pushed my consultant on how long I had left but got nowhere. I need to sort out finances . I’ve moved money, Enjoyed giving some expensive presents to people I love. That boosts me. simplified finances, made a will, made an end of life plan with dr. We have extended our house over the last year and Bob and I now live in a purpose Built extension for us and daughter, husband and 3 children are in our old house, which feels very reassuring. We had to move in with daughter during building works. It meant boxing up our lives which was traumatic, throwing away and charity shop for 70 years of treasures.however we got through that and now life is pretty well organised. . I’m getting a potting she’d next week as I love pottering in the garden, but can’t bend much.
They say pulmonary fibrosis is 3-5 years from diagnosis but this is changing and extending. I’ve had 3 years now. (Aged74) My first consultant said 20 years was achievable. I’ve gradually over the three years needed oxygen and now on it 24/7. The converter was a nightmare on noise originally but now I don’t notice it., so we get used to things.As the others here say hey ho, enjoy what we can every day. I Could go under a bus tomorrow. At least I can be a bit selfish and do what I want most days. Ive just been hit by the flu jab side effect of complete exhaustion for 3-4 days. Breathing worse again, back on high steroids, but much improved today and Fortunately have supportive family. I was lucky to be very healthy and active until this hit me. , which makes it very frustrating, but I continue to enjoy life at this snail pace. Good luck and let me know how you get on. Xxx job
Thanks for your reply you could have been writing about me! Oh well onward & upward! I must stop thinking about what I used to do and concentrate on what I can do, which is very little 🥴🥴🥴 but will keep going xx
Completely understand looseloafers as I am in the same position, I also have IPF and am in year 5 of this illness. When I was first diagnosed the consultant said 5yrs, and although I have taken that on board , I tell myself that everyone is different even though we have the same illness . I am at the moment trying to tidy up my life and agree with the advice of living in the present which I am doing . I concentrate on what I can do rather then what I can’t and try to focus on other things , although the tears and the reality of it all are never far away. I am lucky that I have a busy life and I don’t look ill and I am not the only one in my immediate family that is ill , so the focus is not all on me , but I agree it’s frustrating when you are trying to plan in advance , because you just don’t know , although the consultant did say back in June that I would see this Xmas but could not say beyond that as an infection or pneumonia could claim my life . I would say do things while you can as things can change very quickly. This Forum has been invaluable to me for help and advice , and I hope you find the same . Stay safe and well and keep going . Warmest wishes x
I empathise with all you have said! I am trying to be positive & we have plans for Christmas with family. Hope all goes well for you xx
Thank you! Glad you have got plans for Christmas with family, I am doing the same . Will look out for your posts and let’s hope we both stay stable for a time !!!! Xx
Yes 🤞 fingers crossed xx
Im glad to see you have got to 5 years now, so evey month is a bonus. I was only diagnosed in May with IPFand its very scary not knowing how quickly the disease will take hold. Take care
Yes that’s the thing - not knowing and trying to make plans ...,,,...,,
I was diagnosed age 60 and was shocked that this had happened to me , because up until that I was quite healthy and hardly got a cold , but started to get chest infections and it was after several of these that I got referred. I am also on Ofev but only started it last November, a bit too late. I was also taking supplements and everything was fine until the February of this year when I got a chest infection and had to take antibiotics, and the combination of them and the Ofev and supplements made me vomit every day for a week , so I had to come off everything, let things settle, and then back on the antibiotics, and then re- introduce Ofev , which worked .
I am planning to re- introduce Vitamin D to get me through the winter , and will re-assess my other supplements . I have taken supplements all my adult life , but realise now that I also need to Up my food intake to accommodate all this , as the nurse pointed out that it was an absorbsion issue and that’s why I was vomiting.
I have a small appetite and unable to eat heavy food , but am going to try, especially as we have the added fear of Covid to contend with as well. I hope it all works out for you. Good luck and keep well. X
Thank you for your reply. I have found if i dont eat enough breakfast the Ofev really affects me, i have side effects all day, but if as i do now, eat as much as i possible can for breakfast, i spread it over an hour. The side effects are a lot less.
I have blood tests this morning to see uf liver is okay as they reduced my Ofev to 100mg as liver ALT was high with the 150mg. Im hoping it will be okay.
Take care and lovely talking to you x
Hi Suzie , I also do the same with breakfast , it’s the best meal of the day for me !! I have 3 monthly blood tests , had mine last week, and so far all ok having a flu jab this morning. Good luck with the blood test , hope it comes back ok . Keep well and warmest wishes . Xx
Hi Looseloafers,
I haven't written for some time, probably felt sorry for myself. I empathise with you I too have emphysema on oxygen 24/7 and now require to wear an NIV mask each night as my lungs cannot get rid of carbon dioxide for which I was hospitalised last year several times. I have a great family support particularly my children and I am grateful for it all. I am limited in what I can do but love my garden and just do what I can, rest and do another bit. It's a horrible illness but as previously said we are still here so be thankful and accept wheat we are capable of doing accepting in small doses that's the difference, 'accepting'. I wish you all the best look forward and don't dwell on your illness.
Tarapup5
I do what I can, which isn’t much, but just keep going 🥴🥴 keep up the gardening & keep well xx
I’m the same as you 24/7 oxygen and 18+ hours NIV just of it to eat and shower. I have a nippy NIV as well so I am able to go out in he wheelchair with that and my portable oxygen. Can’t do much in the house but daughter and two sons are always here to do things. I do the cooking with slow cooker and air fryer and some of the nicer ready meals. The rest of the time I’m usually reading or sleeping. Highlight of the week yesterday was going to the ice cream parlour. I just do what I can and don’t worry about what I can’t anymore.
That's the way to think great you like me have family to help out. I feel it is harder during this pandemic and no sign of a vaccine also thoughtless people not sticking to the rules.
Good luck and stay safe. Tarapup5
The medics all tell me to keep as active as I can. I do at least 20 minutes walking a day unless I’m really bad. I sometimes do 1.30 mins. I find at moment can only do 40 steps then have to rest. What I have found that in these rest periods , sometimes more than 5 minutes, I drift into good memories of things I used to do. I used to be a good wild water canoeist and go down torrential rivers, and sea canoeing. I canoed into Fingals cave. I find in these little rest periods I relive some of these times and have come to really enjoy the memories. So - no regrets , have little visits to the enjoyments of the past. It’s just a different way of looking at it. Hope that helps a bit.
Xxxjo
I share your concerns as I suffer a similar condition. I simply constantly remind myself that I only have today, right now in fact is my only reality and I try hard to appreciate all the many aspects of this reality to be grateful for.
Hi Looseloafers, Just a few rambling thoughts... The possibility of IPF was discussed for going on 3 years, then last February's HRCT results showed some progression of fibrotic tissue. My pulmo said "Well, that's it. It is IPF. You need to go on Ofev." So I did, hoping that it helps stop the progression. I go for my first PFT since I began taking Ofev later this morning. Fortunately, my oxygen requirements have stayed the same since my first symptom, which was desaturation. (Fifteen hours a day, no oxygen when sitting; 2 lpm casual walking; 3 lpm if working in house, dusting, running the vacuum. ) I take supplements to keep my immune system as effective as possible. I believe that this has prevented me from having any respiratory infections, which I believe is our biggest threat. When I began having symptoms, I had no idea what it was, but I did know that chronic oxygen desaturation probably meant something real serious. I decided right then that I am going to live as well as I can for as long as I can. Keeping that in mind, as each day winds down I make a 'sort of' plan for the following day, always making a deliberate effort to include something to do that is absolutely frivolous (An example: If Estee has a gift with purchase, I go for it! Or, I might just go sit on the river bank and watch the barges pass.) Something to get myself out of the house. We all know that 'life itself' is terminal, but when told that we have terminal illness, that puts a different perspective on "life itself." So many here wrote real good ideas we can all benefit from. Thanks for bring IPF up for discussion, Looseloafers. J
Can you tell me what supplements you take please. I have IPF and take Ofev. Thank you
Hi Suzie42, I take 10,000 iu Vitamin D3 daily, B-Complex with Zinc, Ubiquinol, which is coq10 for seniors, Magnesium, Vitamin K7 for absorption, and a one a day multivitamin. I upped the Vit D3 from 5000 iu to 10,000 when the virus hit. The lower limit Drs use for D is way too low. Your reading has to be 70 to 80 for your immune system to fight off viruses. One is not over the limit on Vit D until they hit a 150 read, then they need to watch for symptoms. I watched a seminar on You Tube given by an Indian doctor who quoted the 80 read is necessary to ward off viruses. It made sense to me.... I just had blood work done last week and it was all good. I increased the D last March, so if there had been anything negative, it would have shown up then. . Hope this helps...J
Gosh i only take 1000 iu, isnt it dangerous to have too much and can i ask my gp for a blood test to know what mine is?. Another qustion, the other suppliments are they okay to take with Offev ?
My pulmonologist requires all of his patients to bring in a complete list of all medications that we take. He never has said that I was taking too many or too strong supplements. Primary care drs here seem to know very little about supplements. Yes you can request a test to check your Vitamin D levels. If you are low, take D3. Drs will often prescribe D2, which takes longer to be absorbed by the body. In the states, it is estimated that 80% of all people who reside north of Louisiana's northern most state line are D deficient. This is due to longer winters and less exposure to the sun, which is the only way to get Vit D naturally. I don't know how much sunshine England gets. There isn't much D in foods. Even D fortified cereals or milk. The lowest acceptable level is 30, and that is too low to keep a healthy immune system. 50 is the absolute least it should be, and, according to the Indian doctor who has the video on You Tube, 80 is required to help fight off corona viruses. My thought is that it is always best to discuss anything of this nature with one's own doctor, since they know their patients better than anyone else. Dr. Campbell seems more knowledgeable about Vitamin D than most doctors know.... Hope this helps...J
Had my PFT this a.m... There was no change in myy DLCO #'s, which reflect how efficiently my oxygen is transferring to my blood. Thinking that the Ofev must be helping.... Yay! J
Thank you very much for your long detailed reply, very interesting. I will get tested tomorrow when I go in for other blood tests. Glad the Ofev is working. Keep it up and thanks again
I had my Vitamin D blood test and it came back 105, so quite pleased with that. My liver function has remained normal so assume i will stay on Ofev.
I have now been diagnosed with SLL (small lympocytic lymphoma) so yet another illness ive got to cope with.
I hope you are staying well
105....That is great! WHen I became ill, my read was 7....which was depleted as far as any health consideration. I have been taking 5000 iu since May 2017, and began taking 10,000 when the pandemic began to appear widespread here in the states. I'm still just at 72.5 after 3 yrs, taking one daily, and two since pandemic. J.
Wow that's not good it's taking you a long while to get it up. My gp said that she treated someone last week with vitamin D poisoning, she was taking 10,000iu daily and her count was 250. So we need to be careful nit to over do it. I'm going to increase to 1500 daily now. Take care
After 3 years and 4 months, I have only come up to 72.5, with 5000 iu until six mos ago when I began taking 10,000. I still have a long way even to get to 100. According to the Indian dr. who I watched on You Tube, 80 mg is sufficient to help ward off viruses. That is where I am trying to get to. Where I live is listed as a southern state, but it is real close to being midwest, too. So if we get outside, we have enough sunny days. How I got into deep trouble was our daughter was bedridden for 9 years, and I literally only went outside when I went for medicine or groceries. Nutritionists say that just ten minutes a day in the sun will get all the D we need. I'm going to keep taking the 10,000 until the 'virus' is gone.... J
Susie, I just saw the new diagnosis. I am so sorry; one challenge at a time is quite enough! How will this be treated?J
Gosh Jmsutt, you have certainly been challenged. How is your life now, do you get out more, you say your daughter was bedridden , can I ask if she better now.
The new illness will not be treated at the present, although I have to have a certain type of blood test Monday to make sure it's not a leukaemia. Its specialised and the hospital where I have the test have to send it to a major London hospital to get it analyzed. Fingers crossed.
Take care and stay safe
Heather and I always did everything together. It was difficult after she passed to get used to her not being with me when I went out. It took a few years; I really was just getting used to it when Covid hit. Heather passed away in 2015.. Heather had Down syndrome, although that is not what took her, actually. She had had a couple of open-heart surgeries, and , although, her heart was not 'diseased,' there were holes that had to be closed when she was six, and then a sub-aortic stenosis that required another open-heart-surgery when she was twenty-nine. Anytime she got any sort of respiratory illness, bronchitis... her pulmo put her in the hospital to observe her to be sure that it didn't turn into pneumonia. The last week of Dec. 2007, she developed bronchitis and was put in for observation. After a couple of days, her dr said she was okay to go home as soon as the nurse got her up to walk her to make certain all the bronchial junk was out. Before we got her out, a medication mistake was made, a nurse gave her a med that was not ordered. By this time, all meds had ceased. On top of that, the med that she was given is one that is particularly contraindicated in persons that have Ds. Instead of going home, she went to ICU and was put on a ventilator. She made it out, we got to come home a month later. She, with what they thought was Tardive Dyskinesia. In reality, the med had set off an Encephalopathy. She lost her entire neuro-muscular system within a couple of months. She passed at 48. Heather was high-functioning, she read and comprehended very well, did fundamental math. Her favorite thing was traveling. For one who was born with challenges, she made the most of everything she did have. She was a delight to have for a daughter. We had a wonderful life. One never really gets over the 'missing', Susie. We just get used to it. Life is as good as it ever will be. I am so sorry to hear of this new diagnosis. Prayers going up for the best results from Monday's blood work. J.
Thank you very much for sharing what is a very personal, emotional and traumatic time in your life. I cannot even start to imagine what it must feel like to loose a child.
You have all your wonderful memories to take comfort from.
Strangely enough about 3 years ago I had open heart surgery to replace my aortic valve due to stenosis and have always wondered if that triggered the IPF.
Take care jmsutt and stay safe
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