I have been shorty of breath now for some weeks , doctor said I had some crackles on left side so advised my emergency ciprofloxacin which I have taken for 10 days, feel no better, I had an appointment with respiratory on Monday this week but it was cancelled, feeling rough I asked to see a doctor, he said I had crackles both sides and suggested water tablets? Sorry I’ve never heard of this before! I’m unsure what is happening, I have colonised pseudomonas sent a sputum sample prior to starting abs which obviously showed this but I’m not coughing up masses of sputum which is usual if I have an infection! I managed to speak to respiratory who say I wil receive an appointment but not until after Christmas , I am on ambulatory oxygen 1 litre, which was reduced from 6 litres about 5 months ago when I did a six minute walk test. Any help would be appreciated I feel so tired all the time
Short of breath: I have been shorty of... - Lung Conditions C...
Short of breath
I think that you may have to take yourself to A&E because you are being pushed off by GPs who know nothing about bronch and you need serious treatment asap. Any GP who hears crackles in a bronch patient who is colonised with pseudo yet suggests water tablets makes me wonder if they are actually qualified!With a bronch exacerbation it can reach the point where the mucus is stuck in the lower lobes of the lungs. So whilst you don't see large amounts as in a usual exacerbation it is actually breeding away in there and making you more and more poorly. No wonder you are breathless, all of the gunk is blocking you up.
As you are on oxygen I presume that you have a consultant. If so, call their secretary.and tell them your problem. If you do not have a bronch specialist it is not good enough just to be sent to a 'respiratory' clinic where most of the doctors are general respiratory and do not have enough training or experience in bronch. Do find yourself a good bronch specialist, usually at large teaching hospitals. Take the name to.your GP and insist on a referral. Don't take no for an answer because you need to be under the care of someone who knows what they are talking about and at present you simply are not.ĵ
Sorry started this earlier and lost it! The doctor I saw yesterday is not my doctor and tbh I was not at all happy with the way the appointment went, he yawned himself throughout which made me feel quite uncomfortable! I suggested that because of the persistent cough it may be a bronchiectasis exacerbation, he said he didn’t think so as I was not coughing up lots of infected sputum and I had no temperature, my sats were 94% . I’m afraid I showed my dissatisfaction with his comment on prescribing water tablets, I’m already on blood thinners for AF not sure if he figured that one, it may or may not be a problem bth I really wasn’t going to take his prescription for water tablets!! Instead I suggested I start my rescue prednisone and he agreed. I started the prednisone this morning and already I’m feeling better and my sats are fine at 94% I had a letter this morning from respiratory with a new date for my appointment of 8th January. The last exasperation I had was April when I was treated with IV with hospital at home, absolutely wonderful service and the IV Tazocin seems to work wonders for me, ciprofloxacin doesn’t always work! My consultant referred me to the Royal Brompton in London but due to covid have never managed a trip to meet up although have intermittent video calls and I can ask them to send sputum pots, I think in this case I will email Brompton and ask advice many thanks x
It's good that you only have to wait until Jan 8 although you really need proper treatment asap because with bronch pred only disguises a bronch exacerbation by reducing inflammation which aleviates breathlessness but does nothing about the exacerbation.. Only having bronch, I have never had oral steroids. Hopefully they will give you at home IV again. If things were organised properly we should have automatic access to the teams which help with this as we know when we need it. The other thing that many doctors get wrong is not knowing that we can be very poorly with an exacerbation and yet have no temp and consistently high sats. Mine are always 97-99 even when I have an exacerbation.Hopefully you will get sorted soon. Let us know.
thank you so much x
Hope Yr steroids ease the inflammation for u and things settle down.id also put another specimen in,to see if u need any further antibiotics x
hello l had a exacerbation in november 1st one in months l have emphesema and have had lobectomy due to lung cancer my gp , copd nurse are wonderful ...l was refered to a/e 1st who in due course sent me to the ward under the understanding l may have blood clots on my lung ..fortunately it wasnt so but since then to the present date l have been monitered closely by my gp who had submitted me again for another xray again will be ringing with the next course of action ....my sats is around 94/ 96 occasional have dropped below that but not often ....l feel very fortunately that l am looked after by the nhs adequately
Just to let you know that I have written to the Brompton this afternoon, I will let you know when I have had a response, thank you xx
Well done you. Looking after your own interests which is so imperative for us. X
Thank you x
glad you have done that ...look after yourself
Email Brompton sounds a good idea tell them your symptoms , you can’t wait until after Christmas
No joy…A and E
Still reeling from the idea of water tablets ! Prednisolone reduces inflammation but not infection .
I'm reeling from reading your post, I cannot believe the treatment you received by this so called doctor, s/he obviously knows nothing of bronchiectasis & pseudomonas or tge fact that it doesn'talways show in sputum tests. I cannot add to your brilliant replies from Littlepom, if you're with R. Brompton do contact them with a copy of your post. Good luck with it
I can only send good wishes and hope that you receive the treatment you deserve soon.
thank you x
Did your doctor saying anything about your heart Angie as water tablets are sometimes prescribed for problems with your heart. Your mucus for this condition is light and frothy (unlike Bronch which is thick) and it makes you breathless. It may be useful to get back to your doctors and ask for a fuller explanation as there could be another reason for you using water tablets to help clear this mucus which has not been explained to you. Good luck.
My mucus is not frothy and I have very little! I have recently been diagnosed with A Fib and am on blood thinners for that. Usually with an infection I cough up masses of mucus which can be horrid.
Then you do have a heart condition and that is probably why he prescribed water tablets. AF prevents the heart beating properly and makes your blood circulation erratic. This in turn prevents the effective removal of liquid from your lungs. Water tablets help get rid of this accumulated “water” and eases the pressure on your heart. The “new” doctor may have noticed and dealt with something your other doctor may have missed. Antibiotics are not generally necessary for this condition as it is not an infection. As both Chorkie and I have said find out what they have been prescribed for. The doctor may have done you a favour.
Actually, l was just thinking the same as Organiclady! It might be wise to double-check the reason that the GP thought water tablets were needed! Can you access your patient records online to see what he actually wrote regarding his examination? Might be useful & on the off-chance he found an abnormality with your heart/blood pressure, it's better to be forewarned & take meds if needed! Sorry you have been feeling so rotten & hopefully your regular consultant will help a lot more than the GP who sounds like he was vague & not at all reassuring! It's dreadful to have to wait so long for appointments when feeling poorly! Hope you feel much better soon!
I think the way you have been treated is disgusting if there don't care now what's going to change after Xmas me personally and I have done this I would've suggest other wise go to a e I know its the wait but they should do a good check on you and you' hopefully get you sorted
Hi
There is one doctor at my surgery I refuse to see as he knows nothing about me and unfortunately has caused me to be hospitalised in the past. It does sound like he’s thinking on fluid ie water tablets heart but he could be taking a guess because of your previous history. You definitely need seeing by a respiratory consultant for correct diagnosis and if you feel worse call 999 please don’t wait too late, these infections can get really nasty for us quickly.
Take care
Wendy x
Sounds similar to what led my MD to send me a pulmonologist fir pulmonary fibrosis. Look it up.
I too am colonizedwith pseudo..I’m on nebulized drug Colistin every other month… the Cipro probably isn’t working…ask about nebulized drugs.. you should be nebulizing 7 percent saline x2 a day during doingairway clearance, and nebulizing tobramyacin Cayston Colistin or gents ya in..usually start with To y.. submit a sputum and grow a culture asap..go to emerg if you have too
Thank you for your reply, unfortunately I have tried everything you have mentioned but have am intolerant to them, the only antibiotics I can manage are IV Tazocin and the cipro, I also have limited hearing and drugs like gentamicin I’m told will make what hearing I have worse, my consultant tells me we are running out of options!
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