Hi, I suffer from Idiopathic Pulmonary Fibrosis I was on the lung transplant list for 3 years but never got a call. I'm told it was my blood group, Oneg (very common) and my size, 6'1'' and 15.5 stone, so not huge. I have now been told that my lungs have deteriorated to the degree that I would not survive a transplant. They have told to "enjoy the time I have left with my family". Now, here's the thing I don't feel that bad, obviously I'm short of breathe and hitched up to an oxygen supply, both static and mobile, twenty four hours a day but other that that I keep quite well. Is that odd or is it just me?
I'd be interested to hear from anyone with similar experiences or thoughts.
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Baldie
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I have Pulmonary Fibrosis and apart from the breathlessness and being hooked to oxygen 90% of the time I feel pretty good as long as I take it steady, like now tapping a key board. I'm going for transplant assessment on the 26th of this month so everything is crossed. My blood group is O pos, but my lung's are rock bottom negative, anyway as you say life ain't so bad and pretty pain free so long may we continue Baldie.
The paperwork has'nt arrived yet but I think its only a 1 day thing to start with. I talked to the transplant co-ordinator today and she say's the detail's are in the post.
I knew someone with this condition, sadly he is no longer with us, the last 12 months were difficult, but I give this person his due he did as much as he could. In the time I knew him he climbed the Sidney Bridge down under, spent time volunteering and being a fab friend to me. I think it boils down in part to your mind set, and if you feel positive it really helps to cope physically, this goes for any condition. So your not odd, you are you! And besides if you are odd, why not better than being boring. By the way Baldie is that down to the lack of fur up top?
I'm afraid I am rather shiny on top and was given the baldy tag by my youngest son, what a cherub.
Hi Baldie, emphysema is what I have. Great to read about your positive attitude, and one share along with many on this site. At rest my pulse rate is over 115 and sometime over 124, my saturation varies from 88 to 94, ( I love the 94 cus I can briefly come of the Oxy. )Welcome every day and all that it brings. Sorry your transplant news is not what you wanted but keep positive. Good luck
Hi, I know how scarey a racing pulse can be not good. Like you I make the best of good days and get out as much as I can, although not easy this time of year as the cold and wind take what little breathe I have away. But hey ho we mustn't give in.
My dad had IPF, sadly passed away end of December. When he first started to decline in health, his specialist at the time said there was nothing that could be done. End of. Fast forward 5 months and a new specialist dad saw, whole heartedly agreed that there was hope of a transplant and set the ball in motion. Sadly, 3 days after dad died she received the news from the Papworth that dad was accepted. Had my dad seen her originally would dad still be here today?????? the million dollar question.
I am in the process of a complaint with the NHS over my dads care, or lack of and I plan to do a lot regarding IPF and the way it is treated/handled etc etc. I made a promise to my dad that I would do this because he felt he had been neglected and I agree. He was 65 years young and such a positive spirit. He was always laughing and joking and was so determined.
From what you have said Baldie, I do not understand how you can be 'too' ill for a transplant. I know there is a very fine line between being ready for it and not well enough but if you feel well enough yourself then maybe you should fight the decision or at least get a second and third opinion....that is your right. When dads specialist put him forward he was on 4lpm of o2 and dependant on it 24/7. He was unable to walk anywhere, he was wheelchair bound. So if you are in better shape than dad was, then that should be a big boost for you.
Hope that helps, if you would like to ask anything else, feel free.
Take care and enjoy life as best you can xxxxxxxxx
I'm sorry to hear your story about your dad's treatment. It really does depend on the doctor you see as to what treatment you receive. When I was first diagnosed I spent a year under a doctor who didn't know what to do with me. Fortunately he transferred me to one who did and my slide down a very slippery slope was slowed dramatically.
As why I am no longer a candidate for transplant, it has been explained that as the fibrosis destroys the lungs the diaphragm takes the space and there is no longer enough room to put in healthy lungs.
I to am on 4lp of O2 24/7 but am still able to get around and drive on my own and will continue for as long as I can.
I have just been diagnosed wih IPF I realy did not know the difference (COPD)I am getting to grips wth the breathing techniques, and I have been told that I need oxygen assesment to decide what level I need, I am 85 years old, so I am not grumbling about it after all something is going to get me. I am very heartned and yet chastened to hear of your experiences, my first thought was to curl up and conserve my energy but I can see I have a lot to learn.
Good luck to you all
DNOMxx
Hi Baldie
At 59 I decided that new lungs should go the young. It was an easy decision to make as my fibrosis is caused by rheumatoid arthritis. I too do not feel ill and sitting in a chair do not feel as if there is anything the matter with me. So with that in mind me and my faithful oxygen go everywhere together.
When walking am at 15l/min and cylinder follows me in a trolley bag. At rest and doing housework etc on double oxygen concentrator at 15l/min and in bed at 9l/min. Since coming out of hospital in Nov, drs, physios and nurses have all said it is a miracle that I am still alive! I therefore owe it to myself and them to be upbeat and positive and make the most of everything I am offered. I even have a faint hope of returning to work after Easter!
I love lung rehab and being pushed. The more exercise the better I feel. I have no idea how much of my lungs are left, who cares, I am managing with it. As long as I have enough breath to laugh I shall remain alwayssmiling.
Well done you. Like you I don't worry how much of my lungs are left and like you I try and carry on as normal a life as possible. We even bought a caravan last year and intend to roam with it and my oxygen around the UK later in the year.
I'm a similar age to you 62 and quite agree that any lungs available should go to the young. Some of the youngsters I saw at Harefield Hospital are quite remarkable in their outlook on life it made me wonder whilst I was on the transplant list if the age limit for the operation is set to high when there are so many youngsters on the list. I know that there will be a good many who disagree with this but it is what I think.
Keep smiling and keep well.
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