Newly diagnosed feeling confused and afraid, it’s been a hard 6 months.

[Tezwik]

I don’t know where to start....

September 2018 I had pneumonia, the paramedics came out and thought it was pleurisy, I had a fast heartbeat, high Temperature, rapid and noisy breathing, I was put on 2 different nebulisers, I refused a hospital visit due to being a lone parent of a lad with autism. (It was my neighbour who called the paramedics as my son went and fetched her as I wasn’t responding to him) I saw my GP who prescribed prednisolone and doxycycline and a blue inhaler to take (no diagnoses of asthma at this point)

October and I had another chest infection, and another in November and December.

Decembers chest infection raised alarm bells with the GP and I was sent for chest X-rays and spirometery tests, the X-rays showed a small pocket of infection which the Drs believed is what kept coming back and reinfecting my chest, but the spirometery tests show absolutely nothing, not even asthma, so my GP got me to do peak flow readings for the next 4 weeks.

January came and I returned to the GP to discuss my peak flow reading and she said I have asthma, was given a blue and a brown inhaler, then mid January my brown inhaler was changed to a pink one due to my chest still not settling down...

Fast forward to March and yet another chest infection and another trip to the GP, at first she didn’t seem overly concerned and booked me in for an asthma review with the asthma nurse (10/04/2019 today)

Monday (08/04/19) had to have a medication review and the GP I saw seemed really concerned that I’d had so many antibiotics and steroid treatments in such a short time and is confused as to why my spirometery tests show absolutely nothing and yet the X-rays show a pocket of infection and has referred me to the hospital again for more spirometery tests.

So today I go for my asthma review, I feel like I got no where. I was told to buy a humidifier, lose weight (I am overweight) take 2 extra puffs on fostair on a bad day and that she thought I was a medical mystery and she would have a word with the GP who’s been dealing with my chest problems and to call an ambulance if my peak flow drops below 200 (I’m only just blowing between 200 & 240)

I just feel so out in the cold about my condition, I feel like I don’t know if I’m doing the right or wrong thing, I explained I couldn’t hold my breath for the recommended 10 seconds after taking my inhaler through my spacer, she didn’t even check my inhaler technique. I struggle some days to walk from the sofa to the toilet when I’ve got a chest infection, my chest rattles all the time, she didn’t seem concerned, she just said she understands I find it difficult and that was it.

I actually feel really alone.

[Tammoth]

I'm afraid I can't offer much advice other than to say I am similar to you, though with the exception of the infection (though bloods show I had a virus at some point.) Since December I've had loads of pred and antibiotics and increased inhalers as well as fostair 200 and normal spirometry but I am still really struggling. It would seem that whilst you are supposedly a medical mystery that you are not alone.....makes me wonder if this infection is an odd one

[Tezwik in reply to Tammoth]

It does seem that way, to be honest the nurse wasn’t very reassuring and left me feeling even more bewildered than I already am. I’ve never had chest problems till now so I’m finding it all quite scary as they all keep saying my symptoms and

Constant infections point to COPD yet the tests show nothing. I am so fed up with being so poorly all the time

[strongmouse in reply to Tezwik]

Have you had a clear chest xray? If not I would suggest that you ask for one to ensure that the infection has gone and that they are treating you with the right medication.

[Tezwik in reply to strongmouse]

Yes my last X-ray I had was clear, the infection clears up but seems to come back again just when I’m starting to think I’m on top of things

[corinneyvonne]

I am sorry that you have not had a good experience. My journey was initially similar to you with pneumonia in 2016 and then multiple hospital visits with exacerbations. My diagnosis was firstly COPD and now Severe Asthma but to get to the right diagnosis was so frustrating and incredibly lonely. The problem is that everyone is so different and so everyone’s treatment is unique to them. It will take the health professionals some time to get your treatment right. I am lucky that my current meds have almost ‘cured’ my asthma. I am on Mepolizumab (an injection every four weeks) and then daily Fostair and Montelukast. They tried everything before the right choice came along. It is hard, I know. It is frustrating, I know. It is upsetting, I know. But most of all it is lonely. No one understands what it is like to walk in your shoes because you are you and your journey is unique. I spent so many hours sobbing for the person I used to be. Talking about how you feel really helps and the Asthma UK helpline is great for this. Also going to a Breathe Easy group will also help. You can find your nearest one on the Asthma UK website. Singing also really helps as it strengthens the lungs and helps to control breathing. Your local group can also be found on the Asthma UK website. So three years on I am well and have gone back to work. It has not been easy and I am still adjusting to the ‘new’ me but I am still here and will continue to fight with every last breath in my body 😂. Try to be brave and when you are not, give yourself permission just to wallow. You need to grieve for the lost you. Always remember that you are stronger than you think and things will get better. My thoughts and prayers are with you and you are not alone 🤗🙏😄.

[HannahBenson]

Dear Tezwik, I know you must feel so exhausted as these back to back infections take a Toole on you. I had a similar situation and went from Pulmonologist to Pulmonologist and was given steriods and antibiotics over and over. My CT showed an infected place on my left lobe that would not clear up. I finally went to a Pulmonary hospital in Denver US and they finally informed me that I had untreated asthma plus once they did sputum samples, it showed NTM which is mycobacterium aviam and must be treated with a series of meds. that are used to treat TB...although this is NOT TB...and not contagious. I did have a bronchoscopy and the tissue taken from the infected area confirmed I did have NTM. Usually people with Bronchiectasis will develop asthma and all types of secondary infections. I don't know if you have Bronchiectasis but that could be the reason you are getting so many infections. My breathing was never affected until later on and then I could hardly walk up a flight of stairs. I was put on the meds. that control the disease (ethambutol, Rifampin, and azithromcin) for a year and then on a dose of Zithromax , twice a week for a couple of years until I gained my strength back. It does come back but I go back on the meds and that is where I am now...back on those meds. for the third time. Well this is twenty years later and I am still able to bounce back after many illnesses. You need to see what your sputum sample is saying and perhaps have a bronc. to see what is growing in that infected area of your lung. It can be treated. Part of the stress is your son's illness. My grandson has been diagnosed as spectrum and autistic. He had early intervention and was able to make eye contact etc. and now goes to regular school...5th grade but it is still a struggle as he needs meds to deal with his compulsions and temper. When you think it is just something that will pass with time, you realize that you have to deal with it in different stages of their lives and it is very hard on my daughter who has to work all the time so I know some of the stress you are under. I feel that too whenever I get an infection and have difficulty breathing etc. I think "Who is going to help my daughter" but I am better off thinking about doing as much as I can...taking care of my health as best as I am able and then letting go of what I cannot control. You can get help for your health but you must go to the right Dr. and have the sputum in your lungs analyzed. Take a day at a time because the less you stress, the better you breathe! (easier said than done)...good luck and hope you feel better and get an answer soon. Hannah

[xxggtt]

I'm in a similar situation at the moment. I've been asthmatic since early childhood - initially severe, but has been mild since. Last summer, I started getting worse completely out of the blue and I thought all I would need was a slight increase in inhaler dose and that would sort it. Wrong! I had change after change to meds, endless courses of pred and antibiotics, visits to A&E, hospital admissions the lot (a bit of a shock after having it so mild for so long) - and still no improvement. I'm utterly exhausted, struggling to breathe, struggling to do everyday tasks, and not getting anywhere. In the past couple of months I've had 2 normal feno tests and 2 spirometry tests - one better than predicted for my age, height etc., and one with reduced FVC, which confused the consultant a bit!! (he now thinks this was because of air trapping in my lungs). Repeated chest x-rays all normal.

We have finally made some progress in the past couple of weeks - with 2 blood tests showing that my immune system isn't working as it should be, and the consultant now thinks I might have some kind of chronic infection in my lungs - possibly fungal.

Basically wanted to say - there is hope! I'd completely lost all faith in getting better, but it's now looking like there might be some improvement to come! It might also be worth getting bloods done to check your immunoglobulins etc. to see if there's something going on with your immune system which is causing you to get all those infections.

And please don't give up trying to get help, even if doctors and nurses brush you off. I almost did because I wasn't getting anywhere, but my family pushed me to keep fighting for help. I really hope your doctors find a way to help you!

[Nanny1086]

Hi , at the moment I’m quite poorly myself with pneumonia,just come out of hospital, first I can’t hold my breath either ,but ask for a spacer then you don’t have to ,unless an infection is cleared completely it will linger and reignite itself ,,so antibiotics 2week course every time , ask gp to refer you to Pulmary Rehab they are life savers in my opinion, Doxycycline is what I’m on it’s a good antibiotic, I cantadvise any further , good luck ,