Worse breathing

Hi can anyone help I feel desperate my breathing for the last 6 month or so is like having an exacerbation I cannot do anything for being so out of breath I had an appointment for breathing tests and the treadmill test then got a letter from my. Consultant saying he can understand why my breathing has got so worse as there is a considerable narrowing of airways he then sent me for a CT scan and I have a follow up appointment in march but march feels like ages away and I am really struggling can anyone relate to this video can

[2greys]

Nobody here can make a diagnosis, all I can suggest is a visit to your GP, it is possible that "a considerable narrowing of airways" is being caused by inflammation especially if you also have a wheeze. See your GP, who may prescribe a course of steroids for it, but remember this is just a suggestion, not a diagnosis, only your GP or consultant can do that, there are other causes for narrowed airways. The consultant should have sent a letter through to your GP as well.

[Hidden in reply to 2greys]

Thank you for your reply I think I will consult my GP maybe I do need steriods

[Hidden]

I suggest that you ring the consultant’s secretary. Tell them that you have had the ct scan and letter and that you are in trouble and need to see the consultant as soon as possible. These appointments are sent out at random ( usually from a central hospital office) to fill a diary without consideration of a patient’s circumstances or needs. The secretary has direct access to the consultant and they are usually very nice and helpful. Good luck.

[Hidden in reply to Hidden]

I have done what you suggested and contacted his secretary she said that the hospital has been so busy in the reality dept but she would keep me in mind if any cancellations come up thank you

[Hidden in reply to Hidden]

Good I hope that she manages to fit you in soon.

[Hidden]

I'm in the same boat & my consultant is flummoxed. Also, I can walk around indoors a bit but outside can only manage a few steps, even with thick scarf over face. Noone seems able to explain why! Does this ring a bell with you? I'm on the maximum of lots of meds but not getting any better.

I agree with Hidden , contact your consultant's secretary, they're often very helpful. Or, if you can find an email address for the consultant, all the better. If your breathing is really poor, they'd rather know about it than have you end up in A&E.

[Hidden in reply to Hidden]

Thanks for replying to me do you feel really down with this constant struggle

[san37 in reply to Hidden]

After the last 9 months and in and out of hospital and on the highest dosage of everything they can give me, and using between 12-16 puffs of ventolin a day to get through. Just tight and wheezy and when do anything out of breath, blood tests shown the last 8wks inflammation markers increased. The consultant has forwarded me to Birmingham heartlands hospital this month for a day of tests and see consultant there, so really hoping they can advise more.

Update I went to Birmingham Heartlands Hospital first what a brilliant place, full assessment done and seen consultant. Someone was finally listening to me and they don’t relate this to my chronic asthma/copd and being admitted in March for a week of CT Scans more depth and Bronoscopy etc etc to take biopsy’s from further down than voice box due to suffering speaking if in conversation. The main thing is if you think something not right don’t give up until a second opinion my last words from the consultant at the last hospital were “I can’t open you up and repair you” and your getting older and will deteriorate due to damage, of infections to lungs, and that was it after months of in and out of that hospital and all scans but never took biopsy’s or did a bronoscopy, and I kept saying I have never ever been breathless and can’t do anything at all fgs I worked full time and I had a good social life, enjoyed holidays and unable to do anything now. He then said you have puzzled us here and will have aword with Birmingham consultant but at to chase that up a few times. My grandad and great grandad both died at 64 with lung cancer from lung disease, but the advance medications were not available then. I’m using all the Spriva and symnicort etc and ventolin now 12-16 puffs aday etc etc. The pain in my shoulders and mid back, and neck hurts everyday. I’m just hoping now to get a diagnosis I really am and know I’m at the right place. If something don’t feel right keep on until they can bottom it. In the end we are nothing to Nhs but we are to our families!!!

[Hidden in reply to san37]

Hi I hope you can get some help I know exactly how you are feeling

[san37 in reply to Hidden]

Thank you

[Kristicats in reply to san37]

🤞🤞

[san37 in reply to Kristicats]

Thank you

[Hidden in reply to Hidden]

Lately I do, yes. I kept my spirits up for quite a long time but it's so exhausting, in the end it grinds you down. Today I suddenly started crying, which isn't like me at all. I'm trying to take one day at a time & pinning my hopes on the consultant having a plan to improve things. Are you on prednisone? That would help the inflammation. Ask your GP about it. Also, if you use a steroid inhaler, maybe you could ask about increasing the dose until you see the consultant.

[syntax]

Has anybody mentioned COPD to you at all.Because with your comments,that is what it sounds like to me.l have been living with it for nearly 12 yrs now,knowing it cannot be cured.If you put your mind to it and take it in your stride,you will find it easier.Sadly although l had help,it was not of the right kind so l went through Panic attacks and all that goes with it.I was lucky at one point in that l had meetings with this young lady who was assessing me.She gave me one really important piece of advice,important because most people spend years in the state l was in,and NEVER get out of it. She said " to be honest,

none of what you are going through IS REAL.It is all in your mind and if you think of it like this all of the time,one morning you will wake up and it will be gone " That young lady saved my life. !!!

[Hidden in reply to syntax]

I am sorry I did not make myself clear I do have COPD and like you I have had it for 12 years since I was diagnosed what do you mean by its all in my mind are you talking about the shortness of breath is in my mind

[san37 in reply to syntax]

Sorry but that person who said that was typical ignorance of someone who doesn’t suffer from breathing difficulties, because whatever way after working hard and good social like etc and when come to this it is totally life changing and yes we make the most of good days. That person helped you thankfully for saying that but it also could make someone deteriorate further. I will always say unless someone suffers with lung disease have no idea how it affects a persons whole body.

[Hidden in reply to san37]

I totally agree

[Shazrab in reply to san37]

I also agree 🌹

[syntax]

No,i was trying to say that is not a good idea to let the shortness of breath get to you.It did me at first,so l went into Panic attacks and Depression.This because the

Hospital gave me one Diazepam and would give me no more. The shortness of breath is

real enough,and as you know by now it can get to you at times.When you wake up every morning and you are short of breath,it can get you down.But it is nice to wake up !!!

[Hidden in reply to syntax]

Thank you it's just very tiring continually being out of breath

[syntax]

Yes,especially if you were anything like me and on the go all of the time.Now l cannot even walk my dogs.Been reading about a new inhaler, Trimbow,which l will be asking my Doctor to put me on.Here's hoping we can last another 12 yrs. Luck.

[Hidden in reply to syntax]

I was put on Trimbow last November before that I was on tiotrpium because my breathing has got so bad over last 6 month I went back on the tiotrpium 2 days ago although I don't see my consultant until April I just felt like I was worse on the trimbow so I am hoping he will take me of it when I see him I don't think it lasts the 12 hours you take it twice a day

[syntax]

Do you not have an emergency kit of DoxYcyline & Prednisolone ? Because you should

always have a spare one on hand,just for that purpose.

In the AM l have one dose Symbicort 12hr,and Respumat two puffs 24hr.PM one more

of Symbicort, as well as Salbutimol during day. But what is really helping,as mention before (hope not to you ? ) is, Amoxicillin (antibiotic ) twice a day ???

[Hidden in reply to syntax]

I have not heard of Doxycycline I always have a coarse of amoxicillin but I don't have a chest infection I don't have a coarse of steriods in the house but I think I might talk to my consultant because I do think it is inflammation that is the trouble do you take amoxicillin every day even if you don't have infection

[san37 in reply to Hidden]

Hi I have had Doxycycline a few times and it is a good antibiotic to help break the mucus although nothing helped much last year. I am on Spriva Respimat everyday 2 puffs in a morning, 3 puffs of symnicort 400 morning and night to which they didn’t want to increase from 2 puffs, on Montekulast tablet at night to help move mucus. Lanzapole to help with digestion of food, anti depressants, and fenbid gel for back pain and pain killers, flucanase nasal spray, and Ventolin taking 12 to 16 puffs aday which they have now said just use when required. Just wondered if you were on any of this medication.

[Hidden in reply to san37]

Apart from ventolin I don't take any of the ones you are on I do take cocodamol as I had a part of my right lung removed and always feel pain from that due to the scar tissue jam on Trimbow and if I get an infection I use amoxicillin I also have a nebuliser

[san37 in reply to Hidden]

Probably be worth speaking to your doctor to see if something else possible to stabilise your breathing. I was told not to use so much ventolin by respiratory team but consultant said to just use it when required. They don’t want me to use my nebuliser though because said how else would they treat in any admission to hospital other than antibiotics and steroids. But it sounds a little while before you have an hospital appointment, and really drains you struggling constantly. I really hope they can get on top of this for you quickly.

[Hidden in reply to san37]

Thank you for your support it feels good to talk to someone who understands

[san37 in reply to Hidden]

Understand entirely. Take care and I would go and talk to your doctor to see if advise more. Keep in touch

[syntax]

I do,because it stops me (generally) getting an infection.

Far harder to get rid of one.Than to get one,then lose it.

[Shazrab]

Hi I understand exactly how you feel , my breathing suddenly gets so bad it terrifies me. I have copd, I still don’t understand this condition as iv spoken to people just recently who have it yet their life’s havent changed much ? My sister has it also she is 20 yrs older than me I’m 48 and she just said same thing as iv said above she can’t understand why we both have this but she can just about does all the things she loves ? She actually thinks iv got something else ( cancer ) and I’m not telling her . I’m so unwell things gradually got worse for about 3 years now . Iv need on doxycycline but they made me so ill I took allergic reaction iv tried many different antibiotic over the years there’s only one I can take now along with 40 mg steroid for 5 days it helps to break up phlegm better . My heart goes out to you because your suffering so much and I do really understand god you feel last year I found myself just going into floods of tears , I was feeling sorry for myself because I felt I can’t go on with baisically just being an existsance. I wish you all the best I do have other things wrong with my lungs but I won’t go on anymore. I would love you to get s sooner Appt with specialist and hope to find out how you get on . My luck for me is that my hubby now stands up to drs for me as I’m a nervous wreck and he just keeps throwing more & more questions at them I also record every meeting with my phone it’s amazing the things you don’t hear them say anyway good luck I will keep you in my prayers . Thank God for this group or we would never get the support we need . Please please keep us informed in how things are 🌹🌹

[san37 in reply to Shazrab]

After investigations and my hospital puzzled about medications not helping my Severe Asthma/COPD diagnosis and me saying for the last 8mths Iv never ever been like this before and pain in neck and shoulder and back and voice awful so faint and graspy, and lost my grandad and great grandad to lung disease which developed to lung cancer both at 64 (I am 59), they transferred me to Birmingham Heartlands Hospital which I went on a full day of tests and see consultant last Wednesday, what a thorough brilliant professional person he was, he doesn’t relate this to my condition and sending for me to spend a full week in hospital for CT Scans etc etc for all biopsy’s be taken. Someone has finally listened to me couldn’t thank him enough. Fingers x

[Shazrab]

That’s great news I’m so glad someone is looking after you in the medical side, I do hope you get some good news and a lot of help while you go through these tests and all the best of luck for what ever treatments you get hopefully the best. Take care and keep in touch let us all know how things go 🙏🌹🌹

[Hidden in reply to Shazrab]

Will do thank you

[Shazrab]

Sorry ian1, iv just realised the reply was from san 37 I thought you had written this I had obviously misread it although it seems san37 has also been having a hard time but is now thankfully getting some help 👍. I wish you both well all the best 🌹🌹