Waiting for diagnosis

[smarttart]

Hi there I'm new here so this is probably going to be very long winded. A month ago I started coughing then it gradually got worse and I was waking up at night coughing (about 8 times) and was struggling to breathe and retching, I had a really bad pain in my ribs just under my breasts. I ended up at the docs who checked my lungs and she said they sounded clear, said it was acid reflux (which I do suffer with) and a possible chest infection and gave me amoxicillin and omperazole and off I went and she signed me off work and told me to come back the following Monday to see how I was doing.

By the Friday I was in so much pain it was hurting to breathe so I was back down the docs again who said he thought he could hear a slight crackle on my lungs, told me to go home and rest up. Went back for my check up with original doc, still suffering with the same symptoms but lungs were clear so she sent me for a chest x-ray and reluctantly (I felt) signed me off work again.

On the Thursday I was in so much chest pain it hurt to move let along breathe so my oh took me to the A&E. They did an ECG and looked at my chest x-ray and everything came back clear, lungs were clear but I still had the hacking cough and pain in ribs. So the doc gave me Doxycycline and Codeine. I phoned my docs the following week to get my sick certificate extended and was asked to come in re my chest x-ray.

I finally feel that someone is taking me seriously, he said the x-ray was clear but I could have Bronchiectasis caused by the acid reflux and I've possibly inhaled small particles of food/acid into my lungs from the reflux. He is sending me for a CT scan which I think he said could take 3-6 months. My worry is how long this is going to take before I feel well enough to go back to work. I'm still in a lot of chest pain which has now extended to my armpit (which I'm guessing are my glands trying to fight off any infection) I'm not coughing so much at night now and it is now a dry cough (nothing comes up), during the day I am still dry coughing but I am now clearing green phlegm from my throat. The acid reflux fortunately seems to be under control. I have quite a physical job and have been off work now coming up for a month and there doesn't appear to be any light at the end of the tunnel and I am starting to panic that I'm going to be sat at home for evermore and end up losing my job. How long do the antibiotics take to start showing an improvement ? Is there anything I can do to help myself ? And most importantly does this sound like Bronchiectasis because I'd never heard of it until last week ?

[Clamdigger]

On a regular xray didn't show anything for me it was the CT scan that showed all the problems. I would go to out patients if green is coming up in the phlegm . If you go to the hospital at least they have what you need. Plus tell them your waiting for a CT scan to see what is going on with your lungs and say your getting worse you might get pushed up the list or they just might do one while your there who knows ... Plus they can't lay you off for being sick here in Canada it's the law.. Hopefully you'll get it straighten out soon and feel better. Not good having green phlegm

[smarttart in reply to Clamdigger]

I'm on antibiotics for the infection so hopefully they will start working soon. I'm not at deaths door so I can't go back up the hospital again. It's just so frustrating that you know something isn't quite right but you feel no one is taking you seriously. The last doc I spoke to seems to be on the case so hopefully I will find out what is going on.

They shouldn't lay you off over here but my company doesn't seem to take any prisoners but I've heard stories of people being ousted if feel you can't do your job properly. One thing in my favour is that I don't take a lot of time off sick and until this happened I've been quite healthy. Maybe that's why I feel so guilty about taking time off.

[Sohara]

Have you finished the Doxy yet? what dose did your GP give you? its possible you need a stronger dose. You could have just caused your ibs etc to hurt from all the coughing and retching you have been doing . You can read round the threads on this site, there are loads regarding how to keep your lungs healthy . Doing breathing exercises etc. Try to build yourself up by eating well and resting.

You have a CT coming which will tell the doctors more, but once your infection gets better you should be able to return to work , if that's whats worrying you.

There are many posts on this site that will help you to build yourself up during and after an infection

Good luck Sohara

[smarttart in reply to Sohara]

Hi Sohara, I'm still taking the Doxy, I had a week on amoxicillin which didn't touch it and then I was giving a week of Doxy by the hospital and on the last visit to the docs he gave me 28 tabs of 100 mg of Doxy to be taken twice a day and I've still got 10 days worth to take. Not sure about breathing exercises as I said this is all new to me so I'm going to have to investigate that. One more question, this site the posts all seem to be jumbled in together and there don't seem to be any separate topics for different conditions - is that correct ? Do I just trawl through all the posts or is there any way I can dig out what I am looking for i.e. breathing exercises or building yourself back up again.

I did wonder if I'd pulled something from all the manic coughing, let's hope it's just that and nothing else wrong.

[Sohara in reply to smarttart]

If you put a topic in the top right hand corner of this site, it should pull up all the relevant posts on that topic that have gone before,

[smarttart in reply to Sohara]

Brilliant I will give that a try, thank you.

[shouty]

Am in the same situation waiting for CT scan after viral bug leading to bad chest infection had the same antibiotics and the same nasty pain too. Hope you get the scan soon I was told about 2 weeks and it's been that already. Trying to keep positive though

[smarttart in reply to shouty]

I think he said 3-6 months for my ct scan, he could have said 3-6 weeks but I'm sure it was months, trouble is the doc bombarded me with so much information that I wasn't taking everything in at the end of the appointment. When I had an ovarian cyst I had an ultrasound appointment through within a couple of weeks, perhaps they don't consider this as an emergency. Have you tried ringing the hospital and giving them a nudge Shouty to see how far up the queue you are ?

[shouty in reply to smarttart]

Think will ring hospital tomorrow to check. Guess it all depends which area we live as to waiting times for scans,

[Hidden]

Hi I know very little about bronchieastas but if it is that you need to take a sputum sample to your doctors to get the right ab, otherwise it is just trial and error. Ask your doctor about it. Good luck and I hope you get answers soon. I hope you haven't got it too. x

[Carnival567]

Bronchiectasis can only really be diagnosed with a ct scan, also when you have an infection it is often necessary to have several different abs until they find the right one for you and you need two weeks of abs for an infection with bronchiectasis. Once the infection is cleared you should be able to go back to work. Coughalot is right about the sputum sample.

I have bronchiectasis too.

[Kerry65]

I coughed for 18 months always put on antibiotics and steroids. All xrays were clear but then a gp thought I had clots on my lungs so sent me for urgent scan. Diagnosed with stage 1 emphysema. ....I still have issues with the cough and chest infections. Hang in there

[Salmo]

With respect to the acid reflux it may be worth checking with doctor that it is really under control. Some folk have breathing problems caused by silent reflux (no heartburn) so it is a remote possibility that your reflux is not completely under control and that some reflux is still happening and causing cough. This article is quite old but has some basic information on this

medscape.com/viewarticle/49...

In your case it hopefully sounds like things may be clearing up and the current problems are more related to sensitisation of throat to coughing and sore ribs from coughing which can take a while to clear up even after coughing stops. However, its probably worth taking this opportunity to make sure your reflux is under control and is not causing any longer term lung problems especially if your doctor thinks this was the cause of your current problems.

[smarttart in reply to Salmo]

Hi Salmo, I think it probably is silent reflux I have as I never suffer with heartburn. I just feel like I have a golf ball permanently stuck in my throat and have been vomiting very late in the evening/in the early hours. I've been trying to eat sensibly and been on omeprazole for the last month and as the golf ball feeling and vomiting have stopped I presumed so had the acid reflux. I've still got 3 weeks supply of omeprazole left so I'm going to carry on taking those. I do feel a lot better than I was when it first started and I reckon another week of antibiotics and reflux meds will see me right.

I think you could be right about sensitisation of the throat as I know if I breathe deeply I want to cough and the cough feels like it is coming from my throat not my lungs if that makes sense. Also a couple of times when I've been eating it feels like food is going down the wrong hole which brings on a coughing fit.

I tried clicking on your link but you have to be a member to view anything and it won't let me sign up.

[Salmo in reply to smarttart]

Ditto to all your symptoms - extremely well described. I have silent reflux with only possible symptom being the same golf ball stuck in my throat, loads of what I would call upper respiratory mucous and a cough triggered by breathing deeply. Also often get revolting dripping nose - possible nasal drip ?.

Regarding the cough trigger I have found that breathing in through my nose and out through my mouth (pursed lip breathing) reduces the feeling that I need to cough though this can be difficult to start. Raising bed and sleeping on left hand side and not eating after 6pm also seems to help but dificult to be certain.

Sorry about article not being accesible. The bottom line of article is that some folk still have a lot of reflux on once daily omeprazole (20mg) and may need to take it twice a day (morning and tea time), or higher doses, as it has a short duration of action. Even then reflux can occur at night and PPIs like omeprazole usually do not work at this time so you may also need to take ranitidine (H2 blocker) at bed time. Finally, it is not just the acid that causes damage, The other stomach contents (enzymes present to breakdown food) can cause problems if they get into your lungs. There is no simple way of stopping this (the other treatments only affect acid) but its possible that something like Gaviscon (with alginate) may help. It lines the food tube and may at least help reduce the other type of reflux (cannot drink anything after you take it or you lose the effect). Final final point is that you may need to take omeprazole before eating as it needs to be absorbed to have an effect. One suggestion is take it 30mins before eating breakfast but ask your doctor.

I've gone into above in such detail as silent reflux is probably the cause of my lung disease and a lot of folk with similar lung disease to me follow above approach to treat silent GERD though I would have to stress that this is extremely extremely extremely rare (1:100,000 ?) so please do not think that if you have reflux you are doomed to have severe lung disease - just worth being cautious due to possibility of this and other complications of reflux.

[smarttart in reply to Salmo]

Thank you for the info. I've just tried the nose breathing technique and that does seem to make a difference so that's a good top tip, I just need to get into the habit of doing it. Saying that I've just walked around the shop - first time in weeks - and I had a couple of coughing fits on the way round so I just hope it was just the cold air that was a shock to my lungs.

I try not to eat at least 3 hours before bedtime as I know that makes reflux worse and I've ended up vomiting. I also read about the raised head of the bed thing but with Bronchiectasis I read somewhere it says to keep your feet raised so I'd have to get one of those beds that fold in the middle !!! God I sound like a right know it all, I'm not really but you know what it's like as soon as you're diagnosed with something you're straight home and onto google, well you are if you're anything like me and the trouble with google is, what starts out as a headache then ends up as a brain tumour !!! Just to prove I'm not a know it all I'd not heard of the sleeping on your left hand side.

They did start me off on 2 tabs of omeprazole for the first week then it went down to one a day to be taken 45 minutes before I eat breakfast. My doc did say that I could have aspirated acid or food particles into my lungs (didn't even realise that was a possibility) so maybe a glug of gaviscon could become my bedtime drink.

I am feeling a lot better than I did a month ago so things seem to be on the mend at last. Fingers crossed I don't have Bronchiectasis I'm just going on what the doc said but I won't really know anything until I have the CT scan. All I can do is try and eat healthily, losing quite a bit of weight wouldn't go amiss either, keep myself fit, have plenty of sleep, keep the reflux under control and stay away from people with colds

[Salmo in reply to smarttart]

Really encouraging to kow that GPs are treating it seriously and gave you sensible advice. Also good that you research things for yourself - it certainly helps in doctors appointments when they start getting technical. Good luck and hope this clears up soon.

[shouty]

Rang hospital to see what's happening and they said no appointment had been made & would i like to do it now ... so Monday pm it is then

[smarttart in reply to shouty]

Blimey that was pretty speedy I might have to try that lol. Let me know how you get on - although they probably won't tell you and the results will go back to your docs.

[shouty in reply to smarttart]

Yes worth you ringing them too let's see if we can get 2 bookings in one week

[shouty]

Any news about your scan yet ?

[smarttart in reply to shouty]

No it's all been a bit of a palaver Shouty, apparently I'm not being referred for a CT scan - the Dr. can't do that, only a specialist can do that - but I am being referred to a Consultant Chest Physician at my local hospital. I went to see my Dr. on the 22/2 and the letter got sent out via email on 28/2 - well you can't rush these things !!! I've just been back to the Dr's this morning because after a month of 2 different types of antibiotics I am still coughing up green phlegm. She told me to stop the ab's as they obviously aren't making any difference and she's given me a pot so I can get a sputum test done at the hospital. Luckily I'm only 5 mins from the hospital so I will take it directly there. My coughing is worse in the morning and eases off during the day so that will get done tomorrow. I hope I haven't got to fill it to the top !!!!

I also got a copy of the letter that had been sent to the Chest Physician that says my chest x-ray showed up that I was had mild peri-bronchial thickening in the right lung base. When they looked at my x-ray when I went to the A&E with bad chest pains the Dr. I saw there said the x-ray didn't show anything up - who's blooming x-ray was he looking at then at as to me mild peri-bronchial thickening is definitely something !!! I've been in touch with the hospital to see how far up or down the queue I am for an appointment and am waiting for them to call me back and I have been signed off work for another week.

Moaning aside how are things with you, have you had the results back from your CT scan ?

Sue

[shouty in reply to smarttart]

Poor u what a going on can't understand why GP can't refer for CT mine did. My results probably not back for couple of weeks. Its the waiting eh x

[smarttart in reply to shouty]

It's all very confusing, the Dr. that referred me (who retired last month !) said he was sending me for a CT scan. Today's Dr. said that they can't do that only the specialist can do that, so one of them doesn't/didn't seem to know what they were talking about. It's a blooming nuisance when you keep seeing different Dr's, nothing's consistent. Oh well at least I've been referred to a Chest person.

I'm of the theory that they take so long in giving you an appointment/referring you on that you have either made a full recovery or you're dead and so saving them time and money lol. God I'm a ray of sunshine today aren't I !!!

You're not wrong about the waiting, if we know what's wrong with us then at least we can start doing something about it, but until that time .....

Oh well the sun is shining, onwards and upwards

Let me know when you get your results back.