Not asthma

[Rainbows22]

I was in hospital for 10 days over Christmas and on all the usual asthma meds , after coming home my temp spiked again and was coughing up green gunk. Then I had to go back in on a blue light but was told by a new consultant after being registered disabled for 27 years by RBH with asthma that I did not even have asthma. But I was being treated with same medication . I was then told I had been re admission with incomplete treatment of ha pneumonia.

My discharge lettter says asthma and pneumonia and yet I was told is was very probable I never have had asthma . Had ct scan , now awaiting lung function, sniff test and broncoscopy with biopsy. I’m scared and confused and alone , feel such a fraud

[Lisacharman]

Hi

Do not feel a fraud I would look at things another way have the tests done and maybe then they can get your diagnosis correct and you will know for defo what it really is I am struggling to get my gp to recognise how severe my asthma is so your not alone but please do not think your a fraud any breathing disease is very hard to live with and at time hard to keep happy and alert and strong but this is what you need to do get stronger have your tests done write down some questions to ask your doctor when you get all the results in as it is always good idea to be prepared you might find they have answered most of the questions anyway but if not it is you time and use that time at the appointment so you have some answers. Good luck xx

[Rainbows22 in reply to Lisacharman]

Thank you , I really hope you have more luck with your gp , I would ask to have a specialist chest consultant apt , that way you’ll have the back up of a specialist too

[Lisacharman in reply to Rainbows22]

I do have consultants who look after my asthma and a specialist respiratory nurse who I can call and leave a message she has arranged for follow up urgently but between her phone calls I ended back up in with suspected flu which luckily it wasn’t it was another viral cold They have put me on Tammy flu and I have my home locked down being very specific as to who come in and when they do come in its aprons and face masks and go and wash their hands to try and cut the risk down I am immune which makes things even harder but it’s time rest and getting stronger day by day xx

[emmasue]

The last time I was in hospital, the consultant said it wasn't asthma, instead it was anxiety. I cried alone that night because I had had asthma all my life. When I went to see the GP, he said don't worry, I know you have asthma. So far, no one has questioned it again.

[Rainbows22 in reply to emmasue]

Thank you

[Lysistrata Administrator Community Ambassador]

Hmm so RBH presumably have done the tests already to.see what else it might be? Are you still seeing RBH, can you ask them their opinion or if not them your usual consultant? It is good to be sure you have the right diagnosis but at the same time, some consultants do like to swan in without properly reading the background and declare that they know better without considering that perhaps this has already been discussed and ruled out.

I would definitely want to ask someone who knows me a bit better about these tests but if you are still an inpatient and feeling ill I understand it is hard to be assertive. Could you perhaps ask them to get in touch with your usual consultant and/or wait for them to do tests if they feel it is necessary? Do you have a contact number for your team and could drop thrm.a message explaining?

You aren't a fraud at all but I do know how it feels when drs do that and don't even communicate properly just make pronouncements. Even if you.do have something else going on maybe alongside asthma, the cons could have handled the way they approached it much better. They don't seem to stop and think sometimes about how it feels.

[Rainbows22]

Thank you , just feeling very alone and mixed up , Brompton did all the tests 27 years ago and I ended up in itu ventilated there. On discharge this time they suddenly decided to say it was asthma and I had had pneumonia. Just feel attacked

[Lysistrata Administrator Community Ambassador in reply to Rainbows22]

I would feel the same! Maybe tests are needed but in your position it's something I would want to talk through with my own team, not a consultant who doesn't know me. There do seem to be some drs who come along and think they can solve a long-standing problem better than all the people who have handled it before. If you have a chronic illness and don't need tests or treatment urgently, I don't think new drs should really start throwing new diagnoses around that way, and order invasive tests without talking it through unless urgently needed. Also I can't see why having pneumonia means the asthma should be discounted. It's totally possible as I'm.sure you k ow to have both and they make each other worse!

Just to check was this in the Brompton with a new cons, or a different hospital? A bronchoscopy is quite invasive so.I think I would want a chance to talk all this through with someone I trusted and see what they think. Wondering if cons is actually a specialist in asthma or focuses on another area of respiratory? I find non asthma respiratory specialists can know less than they think about asthma - in my experience they are more likely than general medics to have a very classic view of asthma and refuse eg to believe that not all asthmatics wheeze.

[Rainbows22]

No this was in my local hospital , thanks for all your support .

[Hiker_chick]

I’m sorry that youve have been so poorly and are now feeling so unsure of everything. Please don’t feel like a fraud because you are not. Whatever the cause of your ill health is the symptoms are very very real and very difficult to live with. I hope you get some answers soon. Good luck x

[Rainbows22]

Thank you so much x