Hi everyone, i was diagnosed with IPF 5yrs ago by accident, i had a scan because i was having some chest pain and they found some scaring in one of my lungs, i am now being treated at papworth hospital and was told that i have 1 to 3yrs to go, i was in shock and am having trouble of making any sense of this, i know this is a very sensitive subject to be asking for advice but my mood has dropped and i am struggling with the news, can anyone please talk to me.
Greg.
I was diagnosed with IPF in late 2008 and was aware that the median survival rate was about 3 years. For myself, I lived an almost "normal" life without oxygen until 2011. For the next 2 years I used only ambulatory oxygen until I had an exacerbation in 2013 which means that I now use oxygen 24/7. My quality of life now isn't wonderful but I am content. I am getting good medical care from my hospital Consultant, my GP and the Community Matron and I am getting lots of practical help from friends. It is almost the 9th anniversary of my diagnosis and I celebrated my 80th birthday in July. I regard my glass as being half full rather than half empty.
Why on earth have they given you this timescale? It makes me cross because it's ridiculous! You have had IPF for many years so why are they now telling you this now?! My guess is that they don't actually have a scooby... And generally none of us know when we will die. I don't have IPF but Hewiehex does and his advice seems sound. Keep talking and asking questions. X
Hi Greg,
I was also diagnosed with IPF 5 years ago. On diagnosis I was given an information booklet telling me that survival rate was 3 to 5 years from diagnosis. This doesn't seem to account for the stage a person is at on diagnosis. Some people are diagnosed far earlier than others so I don't think the 3 to 5 years is very reliable. You don't mention transplant so I am wondering whether you are too old to be considered. If so, my advice would be to keep as active as you can and ask your consultant about medication to slow the fibrosis process (Nintedanib or Perfenidone).
Good Luck,
Helen
hello Greg. I was told last year I had about 6 months, maybe 12 at the most. proved them wrong. it is a shock when you hear it but at my age not unexpected. Just enjoy life as much as you can while you can. Do things you would not normally do. try to do something different each week. I took up the clarinet. can just about manage two long notes blowing out now plus a few others. friend went abseiling for McMillan nurses. do as much as you can, but do not over do it. keep busy and occupied. I also bought a Tai Chi video and do a little each week. you can work at your own pace then. make a few small adjustments to your life and make the most of it. good luck with whatever you decide.
Great philosophy for living with a long term illness Spooks.
oioi i had ipf for nearly 10 years in total telling you 3- 5 is bs its the person also you can keep it at bay a small amount by walking every day i know you get out of breath but in this case its a good thing it makes you lungs work so the ipf dont overtake so easy . the walking is a must for 2 reasons 1 streach the lungs 2 if you have transplant it is vital for recovery make you time is hospital quicker and easyer i was down to about a month to 6 weeks to live when i had my tplant if you want to know anything plz ask me
Some really good advice so far. You have to keep positive. I am/was a scientist but believe strongly in the benefits of having a positive attitude. It will not prevent you from dying of this, or indeed any disease, but I have no doubt you will live longer with a positive attitude. It helps on so many fronts - diet, exercise, keeping on medications, pushing for the best medical treatment etc. The immune system and brain also "talk" to each other and there is a slight possibility that having a positive attitude will help. I'd stress its a pretty remote chance as far as I am concerned but you could just be the people in which it could help.
I would also say it's impossible for me (or anyone) to really comment and provide good advice on the 1-3 year estimate without knowing your situation. Has anything changed recently, is this the first time you been given a sell by date, are you on any medications at present or oxygen. What are your FVC and DLCO values. Without this information nobody can tell you if the prognosis is sensible or just plain guessing though one would imagine Papworth should know. Is this your first assessment there and did they say why they came up with that figure. If you can provide some more information it will help people help you.
Hello everyone thank you for all the advice it is appreciated, in my case i have been treated at my local hospital untill recently being refered to papworth, my lung function is dropping every time i go in, the consultant at papworth told me that the mortality rate is 3-5 yrs which hit me hard as i have children 2 girl twins aged 13 and a son 16yrs, it is good to hear so many inspirational people, as for keeping fit i walk every day and am slowly building and refurbishing my home which i do get very out of breath and exhausted but i do have a positive outlook, i think i need to ask more questions when i go to see the consultant at papworth next month, i want to get onto the medication to slow things down. Is anyone on the medication ? if you don`t mind me asking has it helped anyone?
good morning to all. sorry, not able to give a comment re the medication as not on any for my "lung condition.". yesterday saw the resp nurse who is to arrange for me to have a 6 weeks assessment course. End of it to see if Ox2 is needed. I then went swimming, well went into the water, but it was so cold. took my breathe away just going into the pool. did not stay long. Has anyone else tried ?
I live alone- no family, but three very good supportive friends, two of us are ex-nurses and worked on a chest ward at times as it was called years ago. it is important to stay positive although at times will be hard. I expect you already have, but get your children involved. keep them in the frame, they are part of your life and you of theirs. write down a list of your questions and theirs. Take with you to the consultant and make sure you get an answer if not send him a letter with those questions.
Now off to clean the car. takes me ages, but I get it done. soon it will have to be the garage for cleaning. have a good weekend. hope the sun shines where you are.
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