Bronchiectasis & Atelectasis update

[Otto11]

Hello everyone

Thank you all for your replies & help with my question about Atelectasis which had shown up on my recent CT Scan a few weeks ago.

I was trying to decide on the best way forward as my Respiratory consultant had said in his last phone appointment he would discharge me back to my GP (without ever being seen since I was diagnosed with Bronchiectasis in February 2020 from a CT to monitor lung nodules).

I called the Respiratory consultants secretary to inform her that I had had a CT which included my lungs & she said I was down for a review in August & that if I hadn't heard back by the end of August then to inform them. I knew nothing of this so that was a surprise. I was expecting a phone call but this morning a letter arrived from my Consultant saying that he understood that I had recently had a CT Scan of my chest under Rheumatology for potential Long Covid & more breathlessness than normal. It was headed ILD Results letter, and he thinks quote, that given the passage of time it would be helpful to get an up to date breathing test so that it can compared to your previous one to see if any action is required for your breathing. Unquote. Well I wasn't expecting that but now I'm annoyed as I feel they are just covering themselves as they have not seen me since I had Pneumonia in 2019. My one & only Spirometry test was done when I was first referred with nodules in Feb 18 so quite a long time ago.

Well I will have a list of questions that's for sure.

What do others think please? Is he covering himself? Not really sure why I am posting but just somewhat annoyed & let down & needed to get it off my chest so to speak. Thanks for listening.

[peege]

I think what s/he's suggesting is a full lung function test at the hospital rather than just a spirometry Otto which I'd welcome if you've had no consultant meet up since 2019.

[Katinka46]

I am sorry that you feel let down but I am also a little puzzled. I am not sure why you are disgruntled. The consultant is concerned and wants you to have a pulmonary function test which looks at all aspects of the way your lungs work in three stages: forced breathing, FEV1, the ratio between FEV1 and FVC, peak flow, the way the smaller airways work: then it looks at the way your lungs process oxygen; and then the capacity of your lungs. When the test is done he will contact you to interpret the results. Isn’t that what you want? I hope it all works out for you.

Kx

[Otto11 in reply to Katinka46]

Thanks for your reply. Im confused as Ive been told repeatedly Im being discharged then Respiratory Secretary called me in 2020 to say my CT showed Bronchiectasis & I needed to be seen & he would send an appointment. Then lockdown happened. I then had a call from my Rheumatologist in april 2020 to say she had had a letter from my Respiratory consultant to say I had been diagnosed with Bronchiectasis. & that they needed to see me. I then had a phone appointment from my Respiratory consultant in June 2020 to say I didnt have Bronchiectasis only Asthma & lots of infections & inflammation seen on every CT for past 3 years. He said he would discharge after a further X Ray to check nodules. I then had a further letter from the same consultant in october 2020 to say that he wanted me to go for a further X Ray as had Bronchiectasis & also Pneumonia on my last Ct. this was the opposite of what he said 3 months earlier. I had a call from him again in January 21 to say I'm complicated & have inflammation but not Bronchiectasis but he will call me again in 6 months. In the meantime my GP arranged daily Doxycycline due to the amount of stuff I was coughing up He also wrote to my consultant who responed to say I needed Carbocystein for my Bronchiectasis. I was again confused. I had covid in aug 21 followed by a chest infection when GP said she could hear Bronchiectasis in both lungs. My GP increased my fostair inhaler but this hasnt made any difference to my breathlessness & cough since Covid so she asked my consutant if I could be seen. He wrote to say no but called me to say that I only had Asthma & that he would discharge me as discussed previously. Its been yes you need to be seen then no you dont. You have Bronchiectasis no you dont repeatedly. Then told im being discharged yeta agin. An recently had a CT of full Lungs abdomen & Pelvis done by Rheumatology & received a letter to say I now need to be seen by Respiratory consultant who had discharged me. this is why I'm so confused.Sorry this is so long winded. I just dont know whats going on or what I have or dont have.

[Katinka46 in reply to Otto11]

Gosh. Yes, I can see why you are in a muddle, no, you are not in a muddle, your doctors are. But it does sound as if your lung chap has had a change of heart: wants to keep you on board and check things out. I bet there’s a zebra (rare disease) in there. It has been very hard.

[Otto11 in reply to Katinka46]

Thanks & sorry for my long response ( that was the short version) 🤣I think it’s left hand right hand. I hope you are wrong with the Zebra ( not heard of that ) take care

[Ergendl]

It sounds as if the CT scan results have encouraged your Consultant to reconsider his previous decision to discharge you back to the GP, which is good. The full lung function test will tell you a lot more about what is going on and how best to treat it.

[Otto11 in reply to Ergendl]

Thanks you are right its just been such a confusing & contradictory few years. My GP is also confused which is why he asked for me to be seen face to face in April.

[CDPO16]

I would be pleased to have received that letter, to have more detailed tests and a follow up appointment. I think that the consultant is acting in your best interests.

[Otto11 in reply to CDPO16]

Thanks. I am pleased just very confused.( see my reply to previous comment by Katinka 46. I thought I was discharged.

[CDPO16 in reply to Otto11]

Have read that Otto. If your consultant has changed his mind it's definitely in your favour. Maybe you could ask him when you see him. Wishing you well.

[Otto11 in reply to CDPO16]

Yes I will thanks.

[Hidden]

With bronch It is usual to do full spirometry tests every one / two years to determine if there have been any changes in lung function which ct scans do not point up. It has been over 4 years since you had yours and so I think that it is a jolly good thing that the consultant seems to have woken up and is paying you attention. Hopefully you will see him to discuss the results and how to progress with your management. No I don't think that he is covering himself. Hopefully just doing his job.

[Otto11 in reply to Hidden]

Thank you very much. I'm just so confused by it all. Yes definitely being seen is a good thing .

[Patk1]

Regardless of why,U should be seen Otto11.Youve had & have a lot going on and yr entitled to feel as U do. Do take yr list of questions with you.i hope U get the help u need x

[Otto11 in reply to Patk1]

Thanks I just dont know what I have or havnt got any more. Some answers would be nice & just to know that Im getting the right treatment.

[Davegt]

Someone is offered a thorough lung test to check the current position and they are annoyed! They are doing this to cover themselves! That does not make any sense whatsoever.

I would suggest that this is being done to help you, not to cause inconvenience or cover themselves.

Feeling let down when offered a thorough test. Again that makes no sense at all.

I had that thorough test about 8 or 9 years ago. I have not been offered it since. My transfer rate from lungs to bloodstream was only 38% (tlco). I would welcome another test and certainly not be annoyed.

I hope you receive this in the spirit it has been sent and do go and have the test and not moan.

[Otto11 in reply to Davegt]

Im sorry to hear you have such a bad transfer rate. I will be going for the test & Im NOT moaning at all. If you read my previous posts you may understand my confusion as its been a roller coaster of the last 5 years. I'm just trying to understand why the change of heart having been told I only have Asthma & am being discharged.

[Davegt in reply to Otto11]

Oh I must have misunderstood, sorry. Anyway glad you are going for the tests, which will clarify your current situation and hopefully lead to more focused treatment.Take care.

[Otto11]

Thanks. I struggle with right words since diagnosed with Epilepsy recently & was upset yesterday then got stung by a wasp which was (is) so painful so wasn’t probably the best day to post my feelings! Take care.

[Alberta56]

Any day's a good day to post and get thing off your chest. I'm not surprised you're confused. I hope these new tests will give you the answers you need. Good luck.

[poppyshola]

Hi Otto11, I understand your annoyance at the consultants inconsistency in his opinion because we depend on their opinion/diagnosis to understand why our bodies are acting differently to the norm ... and if he/she can't make up their mind then how are you to have confidence that you are not being neglected allowing your health to get worse... but just wanted to say that the Carbocisteine you have been prescribed would hopefully help you as much as they have me ! I have been taking then for a few years now and have found them to be very beneficial ..

[Otto11 in reply to poppyshola]

Thank you. The carbocystine definitely helps to get things up. I really struggled before. It’s definitely the inconsistency & it’s the fact it’s all based on 🤷🏻‍♀️ As they havnt seen me since 2019 prior to last CT showing Bronchiectasis. GP put me on daily Doxycycline but after a phone appointment with my Epilepsy nurse I mentioned it & she said any antibiotics long term affect Epilepsy meds so they had to be increased. Then Respiratory team said they wanted to try Carbocystine instead. I’m still on higher Epilepsy meds though. Just feeling a bit let down in case more damage is being done in the meantime. Anyway onwards & upwards as they say. X

[poppyshola]

I know ... I understand... they could at least see you to check ...I'm with the Royal Papworth hospital for my Bronchiectasis and was also sent there in the heart department after having a heart attack .. I really can't fault any member of staff there ... they are all so nice.. the consultants ask you questions and actually listen to what you are telling them ... and even through the pandemic they still rang me to check I was OK ... plus if I feel I have an infection they ask my GP to take my blood and if I have an infection they'll book me in for Home IV antibiotics to get a line fitted and administer them myself ... so ... don't let them off ... and don't worry about making a fuss ..

Tell YOUR GP you feel that no one seems to be worrying about your illness except you ... let them feel a bit guilty ... and hopefully you'll get there in the end ... Good luck x

[Otto11 in reply to poppyshola]

Thanks for your reply. I’m very pleased to hear you’re getting good treatment & care. I don’t want to make a fuss as I know it’s mild but need some reassurance I think. My GP’s practice is dreadful I could write a book! I have no confidence in them at all after being told for 4 years that my funny turns were down to depression & panic attacks when in fact I had Epilepsy. I don’t think they feel at all guilty however I did go in last year & had a real rant. He sat in silence & if he spoke I said I havnt finished yet. Not like me at all but at least I got to say my piece. Thank goodness that seems to be now under control 🤞my Epilepsy nurse is also lovely which helps a lot to have someone to talk to.

This group is amazing with all their advice & support. Take care x