I think that it may be five months since I have consulted this site regarding my diagnosis, three weeks ago I went for my appointment and could not believe what the doctor said, whilst reading my chart and not even looking at me she said “You have moved from severe to Very severe, There are four stages, A B C D and you are in the D stage! I am a changed person since this, very little sleep, and when I get maybe two hours I dream about picking my own coffin. I had a cat scan scheduled for 31st. October but they phoned yesterday to say my scan was postponed because they were in the process of upgrading the machine, I am finding this so hard to cope with and I will appreciate any advice that will help me to accept the process of this and how painful will it be for my son to watch
Eireann: I think that it may be five... - British Lung Foun...
Don’t worry these doctors have no bedside manners when I was admitted to hospital 2 years ago the consultant said ( just been reading your notes and didn’t expect to see you here) Why where did he think I was going I have had very severe on my notes for years doesn’t mean anything to me .i am 77 next so will probably die of something else
Good maybe if he hears it for himself he will understand your struggle and why this has made you feel so bad. My specialist explaned to my daughter what was going on with my health quite early on. I was unwell at the time and found it so much easier as i would not explane things properly. I have the alpah 1 antytrypsin deficiency and she is a carrier so i wanted her to understand everythig. Dr was very helpfull and obligeing. I think the stages can be misinterpreted it realy is more about how you are copeing with your breathing difficulties if you are exercising five times a week it sounds like you are doing well. Keep up the good work and try not to worry about nonsensical stages some doctor's like to pigenhole us others say its progressed but its about how you feel and what you can do. Personaly i like the second type.
Sorry to hear about how you were treated by the doctor. I don't know how they can't see that their lack of basic compassion or communication can be really distressing. At best it's not very professional. There aren't many jobs where one could get away with not making eye contact or explaining things.
Eireann, that is awfull and i feel shocked for you to be told that way. How are you feeling in your self? Do you feel you have got worse all of a sudden, if not hopefully the disease is still progressing slowly and you will still be able to continue as you are. I myself have just in the last few weeks been diagnosed as severe fev 43%, but not been told anything else or put on any meds, being assessed for PR at end of month, so hopefully will get more explained to me then. I feel ok in myself, i think, go to work etc, get tired some days, been putting that down to age (56) and not as active as when younger, as drive most places, why wouldn't you!! Just assumed my shortcommings were with age and not a great lover of excercise lol, although am slim and petite. Self medicated for years if got a cold, bought amoxicillin on hols and ventolin, and used if i felt needed them, very rarely see a doctor as the waiting times are ridiculous now
Hi Eireann. I’m so sorry to hear of your hospital doctor’s lack of helpfulness and such poor communication skills! Her laziness and unprofessionalism has caused you such distress! It happens, I’m afraid.
But take heart, there are lots on here coping well with a similar diagnosis, as has been pointed out.....and don’t set too much store by your reactions to air travel. I’m no longer able to use air travel due to the after effects of the AC in such a closed environment. I’ve got tricky asthma but still living an almost normal life, give or take, and I’m no spring chicken myself! 🐓
Yes, take your son next time, good idea. I find these sub-standard doctors work harder with two pairs of eyes facing them, and two heads to respond with questions....and to remember the answers.
Take care, Penny 🌸🍀
My heart goes out to you. I was told the same thing by a nurse after a spyometry test. My reaction was the same as yours and I kept seeing myself in a coffin. Every thought was copd and I have put a stone on in weight. After three months of hell I saw my gp who had a different view than nurse of the results. There are medications to control and there is this wonderful site. Read the postings many people who though not running marathons are living happy active lives with stage four. Don't go back to that consultant and keep reading the posts here. You will be fine. X
Oh You poor Love, To be left like that. I too am Very Severe stage 4 (D), it was my Nurse then that told me. It's been a few years and a lot has happened. You are my age,(66) so I was told when I was 63 and given the chance to go on Oxygen, which I still am on, I am on the Transplant List also. you have to Put your Positive Head on and fight the ...Dam Thing. which I see you are doing by exercise which I swear by. My Inhalers help me. I also have osteoporosis and this Morning with the Frost outside, my Body knew and told me it was aching and needed Paracetamol. We all have different stages of COPD and ours is the Emphysema, Hope you don't smoke. Your Son Like a Lot of people don't see or understand our illness, if it was the Heart, they would be all over you. This is very True.( My Transplant Doctor told me this). You know we are all here to help each other, maybe let him have a read of this Forum !!! keep on being Positive and Exercise Hun. Love n Hugs. Carolina XXXX
I'm quite shocked to read your post. I think some doctors ban these labels about willy nilly and often incorrectly. My husband is severe at FEV 20% and can only walk a few steps without getting breathless although no one has ever said that to him. It's written on letters and his notes. He's 68. If your son thinks you look well and you can still exercise five days a week I think you should stop worrying and get on with your life, taking good care of yourself, eating well, exercising, getting lots of fresh air and enjoying yourself. You are right about the dangers of flying and picking up bugs but there are ways to combat this using nasal sprays etc . Avoiding infections is important too.
Sometimes ,I find the doctors shocking how they speak to patients,I once went to the walk in center,told the doctor I had COPD, with that he said well your story is nearly over..I told my GP doctor and he was angry,so i try not to get myself upset regarding these ill mandered doctors ,so please don't worry,I had to see a Greece lung specialist last month,I could hardly understand him.i saw him for 5min so I was none the wiser.
I wish you all the best.take care.
Hi Eireann, you will be fine as long as you don't smoke and keep away from people who smoke, take your inhalers and avoid infections, but the most important thing is never never give up hope because there are new drugs and cures being found every day.Look up Zephyr Valves on line because it's just been approved by the NHS have a long life Tom
I hope these lovely posts have boosted you a bit. I don't look ill and when I walk Into a new doctor's office I often get a withering-time waster look. Then they read my notes and the attitude changes. On a good day I just laugh to myself - on a bad- I feel like walking out. So take your son with you next time if it feels right. You know yourself better than any medic.
HI Eireann I'm sorry the insensitive consultant has caused you so much distress. Its cruel to be so blunt. My consultant looked me in the eye about a year ago and calmly said I was going to die......I didn't flinch just looked back at him then he said I would be hospitalised....again I just looked back at him......wondering what he was trying to prove? I didn't respond at all then he said he was going to refer me back to my GP but he would put me on oxygen 16/24. LEts face it we are all going to die at sometime or other ...even the high and mighty Consultants! Thing to remember is we aren't going to die when they say in fact I've no intention of dying for a good many more years and I'm sure you aren't either. I'm rapidly losing respect for a lot of medical staff I've come across over the years. All the best 🍀💐
I am so sorry to hear that your consultant treated you with such callousness and disregard, I feel that deep down they are glad that we are suffering because of our smoking. What they do not realise is there was no smoking bans or even warnings against smoking when we were growing up. As regards us dying, I am very aware of that but some people do not want to mention the word so I have to be careful in how I word things on a public forum xxx
Very true I recall no warnings whatsoever when I was young and decided to smoke . I just don't understand those that smoke nowadays with full knowledge of the possible consequences.
That’s just awful .. some consultants/doctors come across as if they don’t give a hoot! They found a growth in my lung.. my consultant said “would you like to know your chances of having cancer?” .. then picked up his mobile phone and punched in a cancer app! I was speechless. Try hard to listen to your body .. I know it’s hard and sometimes you feel so alone .. use this site as your daily diary, constantly put up posts of how your feeling.. everyone on here are so helpful and even on they darkest days put a smile on my face .. hugs my friend x