Eireann: I think that it may be five... - British Lung Foun...

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Eireann

Eireann
Eireann

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

43 Replies
oldestnewest

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

Take care

Dorothy

Eireann
Eireann
in reply to newlands

Thanks so much for your reply, I am 67 years old and I am fighting this disease with exercise five days a week for ten years. I know that it is progressing, but I am still in schock at the diagnosis and the way that I was told, my own GP told me to ask for a senior doctor when I go again

Eireann
Eireann
in reply to newlands

Thanks so much for your reply I do appreciate it at this time of hopelessness, I cannot see the woods for the trees, the problem is that my son does not believe me, said that I look too well, and he wants to be at my next appointment

corriena
corriena
in reply to Eireann

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.

Eireann
Eireann
in reply to newlands

Thanks Dorothy xxx

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.

Hidden
Hidden
in reply to HungryHufflepuff

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

Eireann
Eireann
in reply to Hidden

Hi Suki, You are fine with 43%, I had 47% but I knew I was becoming worse, anytime I traveled via airplane I developed a chest infection, also I am 10 years older than you, so you do not have to worry until you are older. In the meanwhile keep up the good fight xx

Yatzy
Yatzy
in reply to Eireann

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 🌸🍀

Eireann
Eireann
in reply to Yatzy

Thanks for replying Penny your words are a great consolation to me xxx

How dreadful to hear that from someone meant to care for you without any sympathy.you will soon get to hear from other members on here who had the same diagnosis years ago and still enjoying some quality of life. Wishing you well. Joyce

Eireann
Eireann
in reply to joyce74

Thanks for replying Joyce, your kind words really help xx

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

Eireann
Eireann
in reply to rossie1942

Thanks for the kind words Rossie, they are very uplifting xxx

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

Eireann
Eireann
in reply to Hacienda

You are a very brave and positive person, thanks so much for replying I really appreciate it xxx

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.

Stay well

Best wishes

Corin

Eireann
Eireann
in reply to Corin1950

Thanks for replying Corin, your words are very uplifting, I hope that your husband keeps well as he has a good carer in you.

Hi Again Hun, I have for the past hour been trying to upload an Article I saved about "Easy way to Know about COPD" for your Son to Read. I am sorry It won't upload ? I will try when Hubby gets Up,(nights). Love & positivity Hun. XXX

Eireann
Eireann
in reply to Hacienda

Thanks Hacienda, I do have lots of literature regarding this disease, I have always shielded him from my illness but if he wants to be at my next visit with the doctor so be it!

Really Eireann, the figures mean nothing at all. What does matter is how you feel and how you pace yourself. I did not know anything was wrong and was diagnosed as very severe. That was several years ago. I am 76 and am fine with no oxygen, good food and plenty of gardening.

Eireann
Eireann
in reply to kernowdame

Thanks so much for replying, it is comforting to know that I can cope with this. Keep well and keep gardening xx

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.

Eireann
Eireann
in reply to Susan1200

What a disgusting thing to say to you, I think some of these doctors go power crazy and think that they can play God! Keep well Susan and thanks for replying

Duff1953
Duff1953
in reply to Eireann

Eireann what a beautiful name just remember that you know more about your own body than any doctor or nurse

Eireann
Eireann
in reply to Duff1953

Thanks for that, my real name is Bernadette but they asked for a user name when I signed up and as I come from Ireland I used Eireann which is the gaelic name

Duff1953
Duff1953
in reply to Eireann

Hello eireann I sort of worked that out as i am from Monaghan my lovely wife passed away 7 years ago now I have severe copd and I find it so hard to cope but I do

Duff1953
Duff1953
in reply to Eireann

Hi eireann i live in the uk I am not to sure what the difference is with treatments I have been waiting for six months to get onto a pulmonary rehab course I have been told that it will help me my doctor at hospital tried to get me on to the transplant list but they refused as my bmi was to bad

Eireann
Eireann
in reply to Duff1953

So sorry to hear that your wife has passed, you must miss her so much, there is a waiting list here as well but if you are bad enough they insist that you do it

Your FEV1 can very for many reasons including different times of the day and your next test may show you are back in the severe range. You should be able to tell by how your exercising is going if you have lost that much lung function.

Eireann
Eireann
in reply to jackdup

Thanks for that Jackup, I have noticed a big change over the last two years especially when walking, my breathing is laboured and I find it hard to talk while walking, I had not had a lung function test in nine years so they were alarmed.

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

Eireann
Eireann
in reply to treetops

Thanks so much Tom, I have not smoked in ten years, I will certainly look at your suggestions.

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.

Eireann
Eireann
in reply to goat-lady

I will indeed Goat lady, and yes, I do find the replies very uplifting and hope that I will be able to offer advice to someone as well xxx

Hi eireann I can tell by your posts that you are a very strong person i am also of the belief that my family not in a bad way don’t believe or realise how bad my breathing is fev 29%

I do try to be strong and especially where my son is concerned, he is an only child—man of 44 married with two lovely children—but I know he worries so I do not want him to hear anything that will frighten him. I am surprised that you were asked to have a transplant as 29% seems manageable for some

I agree Eireann, doctors today think they are God's .

Take care ,all the best 🐘

Hidden
Hidden

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 🍀💐

Eireann
Eireann
in reply to Hidden

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

Hidden
Hidden
in reply to Eireann

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

Eireann
Eireann
in reply to Candyred

What a horrible experience for you to experience, I feel that my doctor was not too bad, even though it was bad for me! Thanks for replying Candyred and keep well xxx

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