CT scan 10 weeks ago showed pulmonary fibrosis and emphysema.

Had a routine x ray 13 weeks ago which came back saying I had enlarged lungs and chronic bronchitis. As I had no symptoms and no obvious signs of COPD I was referred for a ct scan. That came back showing I have in fact got pulmonary fibrosis and emphysema. I had to wait 9 weeks to get results from gp. Apparently as I have no new symptoms I won’t see a lung specialist for months. I was put on routine waiting list at same time as scan was requested and that’s 12 weeks now. Don’t have any info re stage it’s at or what to expect etc apart from google 🙈. Does anyone know how long I would expect to wait now before I can see a specialist.

[Nicholatracy]

If you have no symptoms then that’s a plus. Exercise if you can, stay active and please stay off Dr. Google 🐞

[Hidden in reply to Nicholatracy]

Thank you for your reply. It’s just not having any information as to my personal results. Have only a printout of the scan results and don’t understand what all the radiologists comments amount to. Totally frustrating. I am quite fit and to all extents am perfectly normal except for some breathlessness walking uphill but need answers.

[Nicholatracy in reply to Hidden]

Does your Do tor have a nurse or PA who could help 🐞

[Gingerninjas]

sorry your not getting any answers.. maybe see Gp again or ask the health expert team on here .

[Mellywelly]

You would think that some information would have come your way, but as you have no symptoms that's a bonus. Keep onto them chook. 👍

[Nitroblonde20]

Well I was admitted to hospital with a flair up (exasperation)on the 2nd February and I am still waiting to see a specialist and I'm desperate I can't walk from room to room

[Hidden in reply to Nitroblonde20]

I’m so sorry that must be even worse. Are you under the NHS as well?

[Alberta56 in reply to Nitroblonde20]

Try asking your doctor to see if he/she can ginger them up. Or phone the ward where you were treated and see if they can get things moving.

[Oatmealbanana]

You had to wait for 9 weeks to get the results from GP for the CT scan? Am I reading that right? 😲

[Hidden in reply to Oatmealbanana]

Yes and only got them because we made an appointment to see GP to ask why we hadn’t got them. She was pretty vague about the results saying she could hardly understand the results herself and she was a doctor but we really needed to see a specialist but it will take months as I was on a routine waiting list due to not having symptoms. She also said I’d get no treatment etc until I got symptoms? She advised not googling but where else can I find out what my condition entails!

[BrigidsFire in reply to Hidden]

No treatment sounds about right. Certainly for the fibrosis as there is nothing they can do about that as it’s irreversible. They will only be able to treat symptoms, i.e. cough, breathlessness etc. Even then it seems they can’t treat particularly well as I’ve had a chronic cough for the last 4 years and nothing seems to work.

[Alberta56 in reply to Oatmealbanana]

It's 8-10 weeks for an MRI scan in my area.

[Lee_Scoresby]

Information aplenty from Asthma+Lung UK plus, of course, the NHS websites. The delay in any proper advice and analysis of your CT results is shocking - can you ask for another GP to read your results? But as @Nicolatracy has said (and from my own experience) exercise is your greatest friend, particularly as you’re otherwise getting on fine. If, later, you have more trouble with coughing or breath, there are readily available medications that will help. Good luck 👍 and I hope you get some better professional advice. (I.e. keep asking!)

[PaulineHM]

Hello GrannyJean,

Fully sympathise with you and your situation and your diagnosis.

The poor NHS is really struggling isn’t it ? Most of us these days have to tightly manage our own health these days and then when you find yourself in a situation such as yours then it makes life even more difficult, anxious and hard to know how to manage.

All is not lost, there are a number of things you can do.

It’s is really good news for you that you don’t have any other symptoms than experiencing breathlessness whilst walking up hills. That’s where I was almost 20 years ago.

Could you identify what you need to know… ? That may help you ask the questions which you need answers to.

Keep a notebook for health questions and answers.

Can you contact the COPD nurse in your surgery and ask for an appointment to discuss your situation with them ?

Can you call the helpline Asthma + Lunk U.K. I have heard they can be very helpful. The website is very helpful as well.

Until you get more information, keep walking, eat as healthily as you can, get your vaccinations if eligible. Learn about what a flare up/ exacerbation/ lung attack is ( it comes with different names ) and how to manage it.

Keep in touch with us here. Wishing you well.

Pauline

[Hidden in reply to PaulineHM]

Thank you Pauline,

Questions like what stage is it. How will it progress etc. I have booked holiday in December to Tenerife. Will it be advisable to still go with it involving flying for 4/5 hours. Will I need further testing?

I will start writing down the questions that come into my head from now on and keep a list for if and when I see a specialist. That’s a very good suggestion! Thanks.

[Ern007]

Interesting post - I have Fibrosis and Emphysema and other pain in neck ailments.

I had and X Ray about 5 years ago and was told I had "Long Lungs" whatever that meant, never thought anymore till a couple of years ago, I had long lungs and I still don't know what they are?

[PaulineHM in reply to Ern007]

Hi Ern, Long lungs usually refer to hyperinflation of the lungs- when through damage they lose their elasticity and remain inflated. Hope this helps.

Go well.

Pauline

[Ern007 in reply to PaulineHM]

Thank you Pauline - I wondered what that was, I had to have extra xray - though was something to do with that,, Take care,

[Alberta56]

Emphysema is manageable to slow down its progress. You obviously need to be able to talk to qualified people about this. As others have said there is much better advice to be has on this site and the NHS site than on Google.. Some Google sites are unnecessarily alarmist . Best wishes.

[Ern007 in reply to Alberta56]

Ask Google if you want to be alarmed, been there, done that.

[Piperava]

Hi Hidden, most GPS haven't a clue what Pulmonary Fibrosis is. You could get in touch with either Action for Pulmonary Fibrosis or The Pulmonary Fibrosis Trust and someone there should be able to answer your questions. You should ask for an appointment to see a consultant at the Respiratory Clinic at your local hospital. Ask also for a Pulmonary Rehabilitation course which will be beneficial to you, talking you through exercises, breathing techniques etc. thus knowing your limitations. My late husband had Idiopathic Pulmonary Fibrosis, the Idiopathic part meaning they don't know the cause. Take care and good luck

[PaulineHM]

Great suggestion to contact Action for Pulmonary Fibrosis. ! These patient organisations are really helpful aren't they.

Unfortunately PR course are only available for people with an MRC Dyspnoea scale of 3 or more- so not always appropriate for many. However there are lots of community classes which can be great for increasing our fitness levels.

Go well.

Pauline

[bhanakatherine49]

I was extremely short of breath and constantly tired due to my Emphysema. I was advised to take Montair plus one tablet every night which would give me temporary relief and help my sleep. But I did not want her to depend on tablet fully which only offers relief not cure. I slowly started Ayurveda, and was introduced to Natural Herbs Centre, my symptoms gradually diminished including my shortness of breath, wheezing and fatigue. Reach them at naturalherbscentre . com. I know I'll get negative comments but I’m sharing this perhaps someone is also looking at genuine alternative treatment. I can vouch for this Ayurvedic treatments but you still need to decide what works best for you. Sending prayers