Pseudomonas advice, please!

[OTTERfun70]

Hi everyone

Haven't been here for a while but really am quite anxious about being diagnosed with pseudo, on top of my bronchiectasis. I have finished my Cipro and, today, handed in a sputum sample, so will await the outcome.

Can anyone answer these questions:

*. My sense of taste and smell are both horrid...can't quite put my finger on the taste/smell but they make everything the same...I might think, slightly smokey? Unsure...just horrid. Why has this happened? Will it improve?

*. I am not in a relationship but am worried about kissing anyone, and friends are not hugging me now or being quite so affectionate in their interactions. This makes me really sad and makes me feel very lonely and isolated. Also, should I meet someone on a romantic level....can I actually kiss them?

*. I have elderly relatives....is it ok to visit them, hug, them, be with them?

I'm very unhappy about this condition and had no idea I could even get it (possibly from a jacuzzi in Canada, in September). Have never had much info or help with my bronchiectasis, apart from antibiotics and carbocisteine.

Any advice gratefully received.

Thank you. X

[Hidden]

Hi OTTERfun70. Firstly you cannot infect anyone else with pseudomonas. It gets into our damaged lungs from the outside atmosphere or, as you may rightly think, things such as jacuzzis. Some people with cystic fibrosis can pass a certain strain on to other cf s because of the genetic problem but there has recently been research that shows this does not apply to non cf bronchiectasis. I have had bronch for 67 years and have never passed any organism on to my family, children or relationships ( and there have been plenty). They, on the other hand have brought lots of their virus infections to me which usually develop into an exacerbation needing antibiotics. You should take the bull by the horns and educate everybody whom you associate with on this point.

Do you have a bronchiectasis specialist to help you manage your bronch and tell your doctor which ab to give you and in what dose. Unfortunately most GPs know nothing about bronch, treat it like copd and do not give a strong enough course of cipro for long enough.

If you don't have a bronch specialist do set about finding one. They will also have a specialised physio who will help you with breathing and tecniques to get the mucus out.

The most important thing with bronch is to empty your lungs of mucus every day so that bugs cannot breed in there. I don't need carbocysteine to make it thin enough to dislodge but some people find it useful. If you can work on emptying your lungs before you go out or mix with people you will be more comfortable and cough less which will not attract unwanted and curious attention.

I will leave it there for now . I am sure that some others will be coming along to fill in the gaps.

[cofdrop-UK]

Hi Otter,

Is it the first time Pseudo A has shown up in your sputum? Littlepom has given you some good advice. I can’t emphasise enough the importance as LP has said of having a respiratory consultant who specialises in bronchiectasis.

To answer your questions:

I know only too well the taste you speak of. When I was in a Patient Group I mentioned taste when we were talking about symptoms but they didn’t put it down in the list of symptoms. I used to be able to tell the difference by taste and pattern if I had pseudo, HI or strep p but such is bronchiectasis that I can’t do this so well now. My con asked me what the taste was like and like you I found it very difficult. The best I could come up with was a kind of musty odour. I don’t notice it when I haven’t got an active infection. Do you think yours is there all the time?

LP has really answered your second quesstion. You really will be able to kiss someone in a romantic way.

You can visit relatives unless unwell or their immune system is compromised. I am not speaking specifically about pseudo here.

What concerns me is your comment about never having had much information on your bronchiectasis.

You might find this link helpful to dip and out of.

europeanlunginfo.org/bronch...

Cx

[OTTERfun70 in reply to cofdrop-UK]

Thank you so much to both of you.

I have only ever given 2 sputum samples and yesterday's was of my own volition, as I am so worried about the pseudomonas. I did wonder if the taste/smell problem might be connected to Cipro...but really think it's the pseudomonas...hence me doing my own sputum test.

I will make a doctors appointment and try and insist on a referral.

My local hospitals are Basingstoke or Frimley...so if anyone has any prior knowledge of consultants in these areas, please let me know.

Xxx

[cofdrop-UK in reply to OTTERfun70]

fhft.nhs.uk/services/cystic...

I used to live in Basingstoke. I have heard excellent reports from a gentleman on BRUS who speaks very highly of his treatment at Frimley Park.

Good luck.

Cx

[OTTERfun70 in reply to cofdrop-UK]

Thank you. I have researched paying privately because I don't think I will get an appointment or a referral for months. I have found a Dr Matti at the Hampshire Clinic...know anything about him? I will call Frimley, too, and see what they say.

Thank you so much. Will let you know how to all pans out! X.

[cofdrop-UK in reply to OTTERfun70]

Do you mean this one

hampshirehospitals.nhs.uk/o...

It doesn’t look like bronchiectasis is one of his special interests. Up to you.

Cx

[OTTERfun70 in reply to cofdrop-UK]

Yes, that's him. Will look into Frimley. Thank you.

[Claudine]

Hello OTTERfun70, I can't really add anything to the others who are well experienced except to say that colonised pseudomonas is fairly common with Bronchiectasis. I take Azithromycin 3 times a week through the winter months to dampen it down (as do a lot of us). I've had a recent exacerbation which has been difficult to clear entirely. The Consultant gave me a 10-day course of Cipro which improved it a lot but did not eradicate it. GP then gave me a 5-day course which did nothing. I have submitted another sample and got a text back saying they could not grow anything. I think they should hold onto it for longer (this was after 2 days!) Last time it took 2 weeks. The daily physio is very important - you definitely need to see a physio. Good luck. Keep us informed.

[OTTERfun70 in reply to Claudine]

Thank you so much. I wish I could meet you all. I'm not loving this...was ok with the bronchiectasis...but am very anxious about the pseudomonas. Am awaiting the results of my sputum test, then I will take it from there. Really feel let down at the moment...I'm sure it will all pan out...but I might have to pay privately for a consultation. Have never seen a physio, apart from 30 years ago, when I had my op. I will keep you all posted.

Thank you. X