A month ago I posted regarding my husband's pneumonia and pseudomonas diagnosis and that he now has bronchiectasis too, according to the consultant, which was shown on an earlier CT scan but no one mentioned it!!! Well he became very ill on Feb 1 and was blue lighted to hospital, put on iv antibiotics, steroids etc. and in the end was given non-invasive ventilation. I was told to prepare for the worst but he battled through. Then his heart rate went through the roof (220bpm). After four days of trying to control it with medication, they stopped and restarted it successfully and he slowly fought off the chest infection. He came home after 14 days and is now on nebulised colomycin as well as everything else. We saw his consultant two days ago and he said there was no chance of the lung reduction surgery now, due to the heart issue as well as deterioration in his lungs and it was a case of palliative care. My concern is that after improving for the first week or so after discharge i.e actually being able to walk around the house, he has now regressed and is very breathless again (although not particularly wheezy) and has a slight temperature but not coughing up anything sinister. As he has been in hospital more than out of it in the past three months, I am loathe to phone again - could he have yet another infection so soon?? Sorry to be so long-winded - but there are many very knowledgeable people on here, I am sure someone could advise. Many thanks
Pseudomonas and bronciectasis update - Lung Conditions C...
Pseudomonas and bronciectasis update
Im sorry you husband has been so unwell. Unfortunately because he has been so unwell his imune system will be very pore so yes it is possible that he has another infection
Please dont hesitate to call for help dont wait till monday thiese infections can take hold realy quickly.
Hi, thank you for your reply. I will keep a close eye on him tonight.
He could be reacting to the colomycin. I had my second try at nebulising it just before Christmas. After two weeks I was very breathless and I couldn’t cough anything up to empty my lungs. I stopped it. I am now just nebulising saline and ventolin and things have gone back to normal.
Hmm ... not too sure how we would deal with that one. The colomycin is supposed to keep the pseudomonas at bay so what would we do then?
Good question. We are all in the same boat. If the colomycin causes bronchial spasm it isn't going to fight the pseudo anyway. Maybe cipro, or more IV or nebbing ceftazidime. I have been nebbing that for 18 yrs on and off. It keeps the numbers down to managable levels. I am giving that a rest now and just using saline. I'm afraid that with bronch it is all suck it and see and working very hard yo get anything that is in there out.
In 2015 I had a community aquired pneumonia
I had to have 2 lots of IV then as my fever went back up two wks after finishing 2 wks IV. I had another 2 weeks and slowly got better. The pseudomonas may be nothing to do with the pneumonia but had been lurking in his undiagnosed lungs. The pneumonia could have given it the opportunity to have a party. I find that it usually does this if I get a virus.
Colomycin made me very short of breath so I was prescribed half the dose (about 5 years ago) and it seems to do the job most of the time.
That is interesting - OH is on two doses of 1000000 - would one be enough??
There are a few alternatives to colomycin so all is not lost on that front: tobramycin is a very common option, although in cf it’s usually month on/month off with another anti-pseudomonal. I don’t know if it would be a similar protocol in bronch patients. Meropenem, which our old consultant once described to me as antibiotic domestos because it kills ‘everything’, can be nebbed. Aztreonam is also very good and is the go to for my 11 yo for IV, and she nebs it and Tobi to keep the pseudo more under control day to day. Just a thought, but is your hubby taking ventolin immediately prior to doing his neb? If not, he probably should - if he’s having bronchospasm from the colomycin it will help. If he’s not having spasm, the antibiotic will penetrate further due to the airways being more open - a win-win in either case.
It’s so lovely that your little one gets everything that she needs and also such good care. Unfortunately in non cf bronch it is very different. We are not given many of the nebulised abs available to cf bronchs, similarly with IV availability and services. Colomycin is the go to nebulised ab for most non cfs and sadly many react badly to it. I have had tobramycin (not TOBI which is only available to cfs) which produced a vicious exacerbation, and gentamycin which closed down my lungs. Luckily for me my consultant has been giving me nebulised ceftazidime for some years by prescribing it off list. I know of no other non cf who nebulises this.
The government simply will not spend the money on us and get away with it by claiming that there have been no studies of these drugs in non cfs. They forget that many of us have trialled these drugs as a control in studies for their efficacy in cf and it has proved beyond doubt that they also work for us.
I live in hope that as more treatments become available for cf we ‘orphans’ will catch a few crumbs which drop from the table.
I knew the situation was different for bronchs generally, and not in a good way, but hadn’t realised it was quite that dire for adults: we have a couple of non-cf bronchs under our cf team, and from chatting to the parents they do seem to get the same care. I’m not sure how they can really justify the stance when the bugs are the same - mechanism might be different, but bacteria are bacteria at the end of the day. It’s no longer a case of proper TOBI only with cf also as a result of cost - we use the generic tobramycin as often as we use Tobi or Bramitob, it depends on the script and stock on the day, so saying tobi has basically become shorthand. Mush has been lucky with side-effects generally, the only problem we had with colomycin was that for the four years she was on it it didn’t really work 🤷♂️ I’ve not come across anyone using nebbed cef, so that’s definitely an interesting one, and we couldn’t because she’s got a systemic allergy from extensive IV use, but my understanding is that gent is no longer an antibiotic of first choice in paeds cf management now. I’m not sure about the stance with adults.
Apologies to the OP if I’ve inadvertently given ‘false hope’ of an alternative. Definitely wasn’t my intention, and I apologise to all the bronchs here for my ignorance. There aren’t many ‘perks’ to cf, but ready access to appropriate meds is clearly one of them! 😳
Whilst in hospital he was on gentamicin but we were told colomycin would be better at home? Bit of a pain really as we have to vent it through an open window so I dont breathe in the antibiotic and it also can leave a sticky residue on everything.!!
Are you using the correct equipment for nebulizing Colomycin? There should be a filter on it. It should look like this:
evergreen-nebulizers.co.uk/...
Colomycin is sticky but I haven’t noticed it causing problems in the room.
I always clean and sterilize the assembly after each use.
Hi that is similar to ours but we dont have the filter disc - i suspect that is why they gave us the hose. The hospital respiratory nurse told us to vent it through the window and they gave us about 5ft of plastic hose!! Primarily so that no one else inhaled the vapour. I think I will ask about that piece of kit or just buy one myself. Thank you so much - might save my blinds - they were certainly buffeted about in the wind last night when we had to open the window!!
I'm glad that some non cf children seem to be getting the same treatment as cfs now. You can imagine how awful it was when I was a child. I only had the treatment that I did because my mother found a radical doctor in Leicester and my GP defied his local committee to give me basically the same treatment as we have now. Unknown then for most bronchs who, like most cfs at the time, just died when they had it as extensive as me. Still, we move on, we support each other and hopefully better things are round the corner. I do feel for you and your daughter.
Unfortunately I don’t need to imagine it as I went through it too from 1948. No education to speak of whilst in hospital in those days and when I was home at the age of 11 I left school twice a week at 2pm and took 2 buses to the hospital for excercise, saline sniffs, physio over the sloped slabs and waited in line with pot to have a graph coloured in. Then 2 buses home. Any wonder I turned out a bit thick!
Cx
Do you think that we should write the book?! Every time I go for my tests the physiologists ask me for stories because it is so far out of their experience. V funny
As a person with NCFBE Charlie I would say there is absolutely no reason for you to apologise. You are very far from ignorant. On the contrary you have so much knowledge and I welcome your posts.
Hope litte one is on an even keel.
Love cx
Which begs the question to the government ‘why has there not been any studies specifically for non cf bronchiectasis’. It has taken EU to put money 50M euros to be exact into trials to run concurrentlly for people with cf and people with NCFBE, which will run until 2020. What then!!!!
In spite of the EU money I have not heard of one drug trial running concurrently for both in the UK. I believe that this is because the UK govt don't want to pay for us to have any drug that is put on stream for cf. 2020 is a gift for them. They just go back to ignoring us. Sickening
It is mentioned at the bottom of this link but appears unobtainable now. My consultant showed it to me in clinic about 2015. I can’t find the original, probably because it is so long ago. I did send an email to one of the consutants involved the day after the referendum as I Was concerned the funding for EMBARC would be there until 2020. He did state they were very collaborative and there would be no ‘bronchie exit’. 2020 will have no effect on the government unless they choose to take up the slack and put their hands in their pockets!
qub.ac.uk/schools/SchoolofP...
This is an article which my con showed to me
healthunlocked.com/blf/post...
Cx
I appreciate the intention but I have yet to see any evidence of this money actually being used in the UK for ncfbe.
Sorry for sneaking in....first line drug for psedomonas is Tobramyacine and Ciprofloxacin for psedomonas...they usually give the pills first to knock it back, then tobramyacine for one month...
Nice try but doesn’t necessarily work. With non cf bronch it is always a case of suck it and see. Oral cipro no longer works for me and nebbed tobramycin resulted in a massive exacerbation. Nebbed ceftazidime has been my long standing prophylactic with IV tazocin or meropenem as a possible back up. At the moment going along simply on nebbed saline and ventolin to give my lungs a rest. Every non cf bronch is different which is what makes it such a b....r to treat.
As he has a temperature I think that he should be seen again. There could still be some pneumonia deep down in his lungs. Quite often with pneumonia in bronch it is difficult to hear anything or cough anything up.It sounds as though he has been living with undiagnosed bronchiectasis for some time. There fore he hasn’t been managed properly which led to the pneumonia. Pseudomonas is just one of the bugs that take up home in bronch lungs. Check that the consultant he is seeing is a bronch specialist, not just a general respiratory consultant.
Hi, sorry, I replied to your post outside the reply box!!!
Apparently it was diagnosed by a bronch specialist following a CT scan in autumn last year but no additional medication then and we were not told about it. At the time there was so much going on with my husband it may have just been an oversight. The only slight glimmer of hope I can take from the current situation is that his SATS levels are 91 - not bad for him, they tend to drop to mid 80s if he is brewing an infection. Thank you for your input - it is so good to be able to communicate with others who know what I am talking about and offer advice.
Hi Bossidan sorry to hear your husband has been so unwell but I would keep an eye on his temperature could be the beginning of another exacerbation even though he was released from hospital 2 weeks ago. If your worried tomorrow ring 111 they will advise whether he needs treatment.
When I went to pulmonary therapy we were given a phone number to ring if we were ill or think we have a flare up,they assess you and if they think you were in need of antibiotics they would come to you. ask if they have that facility in your area. It helps not having to go to a&e. Good luck and let us know how you get on. Xxx😊
Oh thank you for your reply. We have not been given an emergency number - just phone 999 if concerned!! Shame we all dont get the same back up. I will monitor closely as I know he really does NOT want to go back in but needs must if necessary. Xx
I was told by my asthma nurse to invest in a sp02 pulse oximeter which reads your oxygen levels she said those readings with the peak flow readings, as I have asthma too, will warn you when you are having an exacerbation and the colour of the mucus goes from normal to green and a temperature. The sp02 pulse oximeter’s are on amazon at all different prices. That’s my warning my peak flow drops to 300-250 sometimes my oxygen doesn’t drop below 91. I also have pseudomonas with the bronchiectasis which can be alarming when they colonise but antibiotics knock it on the head for a bit. Mucus clearing is key it stops the bugs growing in the lungs. I was taught how to use the huff method at pulmonary therapy. They do have videos on how to clear the lungs on YouTube. I hope this helps. Xxx😊
Hi again, I have an oxygen monitor app on my phone which is amazingly accurate (tested by paramedics) so I do check that. Peak flow is out of the question atm - I doubt he would make 150! Sputum is clear but it was when he was admitted last time - it is all rather bizarre and worrying xx
Hi Bossidan what is the app called? It’s very worrying for you both especially when you suddenly find out and you don’t know what to expect. I wasn’t given any information at all I found this site which helped me a lot and I’m still learning two years later. Xx
Hi it is built in to the Samsung Galaxy - primarily as part of a fitness app but incorporates a finger pulse reader on the back of the phone. It read exactly the same as the paramedics device when checked before the last hospital admission.
Hi, sorry to read your husband's troubles. My Mum is due a CT scan next week after just having those same infections and I am sure I read how prone one would be to further infection after these and she always has an infection when she has a temperature. Hope your husband starts to feel better.
Regards, Phil
So sorry to hear of the difficulties you have both had to endure recently.I would say that even a slightly raised temperature needs investigation. Do please get help as soon as possible. And look after yourself too, please.
Oh thank you - i try to stay positive but it is getting harder. Xx
I have an iPhone but my husband has an android phone I will look. Keep us posted of how your husband is doing.
Xxx😊
I think it is only on Samsung Galaxy or those with the Samsung fitness app pre installed. The pulse meter is a red light next to the camera on the back. It also measures steps, heartrate and stress levels - i dare not look at mine atm !!!😂
Sometimes, the Health Food Store supplements for respiratory are more effective than what Doctor prescribes.
Doctor prescribed following : For infection, a friend of mine, was Doctor advised to take the "all-in-one" Mucinex. Also rec'd an antibiotic along with prescription for Prednisone (which is helping a great deal). To prevent infections....my friend has a cool-mist humidifier so that the air is better where they reside and rest, (also will be getting another one for bedroom area). Also to prevent infections: my friend has a 15 minute portable "steam spa" machine (does daily for 15 minutes). Does inhaler, of Trelegy (very effective), and does nebulizer of abuterol. I know this is a lot....but breathing, is something where one has to "keep at it" constantly, and of course rest (in between doing all the things doctor prescribed). Before taking any health supplements (ask the doctor about it). There is NAC
and L-Arginine. And a whole respiratory section usually in the health food stores. There is also a "Vest" that one puts one (isn't that expensive and is covered by Medicaid) where it cleanses the lungs (we always keep that in mind also.....). They say the vest is good for people with bronchiectasis. Hope this helps. (I know it's a lot.....but my friend is getting very much better).
That is very useful, thank you. Are you in the UK? I will see if the vest is available here. Thanks again for tak8ng the trouble to reply. 😊
The vest is available for private purchase in the UK for respiratory conditions but it’s a much (and occasionally quite hotly) debated issue amongst patients and carers: it costs a lot (several thousand) and it’s not currently endorsed by the NHS in respiratory diseases, but there are a fair few patients in the UK with cf using it that report it’s beneficial to them for airway clearance, and there are some that have been using it for many years now. I looked into it due to issues with non-compliance in more traditional physio methods and would personally advise to do a lot of your own reading and research and decide from there whether it’s something worth looking into further for your husband’s specific circumstances. But to start you off, this is the UK page for the manufacturer:
hill-rom.co.uk/uk/Products/...
I would suggest that you research beyond there, though, and look at both patient testimonies elsewhere and the research papers that exist and weigh it up. There is a clear conflict between what the professionals say about it and the anecdotal patient experiences. There are also other options that *are* supported by the NHS that have the same suggested benefits (e.g. where a patient is too unwell or fatigued to clear etc.) such as Cough Assist, albeit working via a different mechanism and requiring a bit more involvement. Eleven years on from my entering the world of respiratory disease, the vest is still quite a divisive issue and very much a case of horses for courses.
I will most certainly take a look - thank you. My husband has a flutter device but doesnt have the energy to use it properly when poorly. Catch 22 really!
I know, it’s really hard to know what to do for the best and horrible to see the ones you love struggling. Is he on saline nebs, too, or just the colomycin?
I know I’m coming at this from a parent’s perspective with a child, but the thing that I use and rate with littleun when she’s properly poorly but still at home is AAD - Assisted Autogenic Drainage. Autogenic Drainage is clearance via a specific, volumatic breathing technique (no equipment required) and is therefore done directly by the patient. Assisted AD is most commonly used with children who can’t manage the breathing for AD independently, but I have heard of it being used with adults, and someone essentially puts their hands onto the patient to apply pressure in a way that mimics the volumatic breathing, thus helping to move the mucus up. We actually do this whilst she’s doing her Aerobika for a bit of extra bang to our buck (aerobika is a physio device that combines flutter and PEP), and it does really help her clear when she’s not at her best. Not everyone likes it, it can take time to master, and AD and/or AAD has to be taught by a physio, but E much prefers it when she’s struggling. I actually find that if it’s done at the same time as her usual physio, her clearance can be just as effective as when she’s in hospital and using a Cough Assist machine tbh.
I’m not sure how you feel about reading research and papers, but this is a really good piece about AD (including its use/benefit in NCFB): physio-pedia.com/Autogenic_...
It might not help your hubby in the short term, but it might be something that he can learn in the longer term to assist with keeping as clear as possible. There are quite a few videos about AD technique available on YouTube, too.
I hope he starts feeling better soon.
That is really useful but not too sure how OH would feel about it. Will certainly research it, thank you.
Reputable site with some videos.
europeanlunginfo.org/bronch...
This one is for kids but might be easier or more fun for an appropriate adult.
gosh.nhs.uk/medical-informa...
Cx
Just having a quiet chuckle at memories of being laid on a cushion over a wooden, slatted, triangular frame and having the s..t beaten out of me twice per day from the age of six ( 1956) until I finally revolted at it aged 12! I had constant arguments with physios for many many years that I could loosen and remove secretions better by breathing and positioning and now we have developed these systems. I know that cf secretions are generally much more sticky than ours and require a somewht different approach but I am oh so grateful for the children of today that treatment is so much kinder than it was for me.
By the way you are a fantastic parent, your level of knowledge and involvement is wonderful and you are a real asset to the site.
Also....as articles have said and even doctor's....no matter what life has to "toss" you and if
one gets upset ; don't let it affect you so much, that it affects your respiratory system (breathing). Relaxation techniques are important also. It is a lot, but when it comes to one's breathing (and of course I am no doctor), one has to continually pay attention to it,
until the infection has cleared (and even thereafter for a while), and also of course, pay attention to one's health in order to survive. Good mental health is equally important.
So sorry to hear of your hubbys health problems, what a worry for you, its terrible that we seem to be left with sorting out our own problems and not enough information to do this. This site has been invaluable to me as I have learned so much about bronchiectasis and couldnt have got that knowledge from the system or even from some doctors. I think the most important lesson is not to leave it when something is wrong as things get out of hand really quickly. I hope by now things have either settled down or you have sought medical help. Please keep us updated and look after yourself x
Just to update ... temperature is now 37.2 so that is good - down from 38.5. SATS on the low side at 89 but still within his accepted range. Not able to do anything atm but I live in hope that he will improve. If he doesnt get any worse I will just have a word with respiratory nurse tomorrow. Thank you to all for valued suggestions and advice 😊
Bossidan, If hubby has regressed so quickly, please contact your doctor. Perhaps he has another infection and if so it will need treating sooner rather than later. Best wishes. Lilianne.
So sorry to hear your dh has been struggling so much. Unfortunately it can be that you can have a run of infections which are so draining. I have been unwell with exacerbations since late November. Did my own IVs Meroperem whilst away at my family over Christmas and New Year. Had two lots of abs since then. I know I am not alone with this scenario this winter. The weather hasn’t been bad but it does seem to have been a bad winter for viruses and bacterial infections.
I have nebulised colomycin in the past but became so breathless that I couldn’t put a sentence together and my gp sent for an ambulence. Tobramycin did the same but to a lesser extent. It may well suit your dh though so don’t be put off if they suggest Tobra, as I am intolerant to many drugs.
I am so glad your dh’s temp has come down somewhat and I hope you get some help tomorrow.
Love cx
Sorry to hear your husband has been so poorly but I wouldn’t hesitate to contact the consultants secretary to get advice.
Just wanted to let you all know DH is back in hospital with pneumonia - taken in yesterday, despite being visited by GP on Monday, who upped his steroids just in case. He is feeling very fed up but accepts he needs to be there. Not too sure how we can stop this happening every few weeks now as he doesn't even seem to have the tell tale symptoms of an infection any more i.e. localised pain and coloured sputum indicators.
Hope he gets well soon x
I live in the US. Where breathing is concerned, (and in the US the vest is covered by Medicaid (I guess somewhat)….I don't care how much I would have to spend on a person to help them breathing or myself, I would try just about anything to help the respiratory system to be better with COPD. Such a "struggle" and all because years ago, people didn't know. Life can be hard enough without respiratory problems. At times, the COPD is almost "idiopathic" which makes me think it is the atmosphere (which I now have 3 machines to add humidity to residence. ) Idiopathic (really not sure what exacerbates and gives one all the mucus (pneumonia, etc...) at times. A few of the inhalers , the side effects is "more susceptible to pneumonia" and also the side effects to some inhalers is "trouble breathing"; so go figure. With all the technology in the world, I would think that this would be priority (research on COPD and other respiratory distress) over the game boards, and latest communication devices. (where that has become a million, billion dollar industry).
The all-natural way might help. But I do know that one does need prescription steroids and drugs at times for COPD...maybe a "head start" with the steroids at first, and then switch to using a good all-natural supplement or supplements in place of the prescription drugs and inhalers that can cause side effects that one is trying to prevent in the first place. I never dismiss the "all-natural " way. Many people of course want to stand by what
their doctor prescribes (the doctor does know the situation....however, he also is very aware of the side effects). The doctors are in the medical field, they make money off of their work, and part of their job is to prescribe. So I always check out "herbal remedies" or supplements , vitamins in place of the prescription. Not easy at times,; but worth checking into.
Hi, thanks for your input. I totally agree with you on both counts. The problem with natural remedies is that they don't work for everyone, it seems, and by the time you have found out that they have not done the job, more damage has been done. If I was the patient, I would try anything but as I am the one sourcing on behalf of my husband it is a difficult one to call. In the UK the NHS funds the treatment and I don't think prescribing doctors have any vested interest in the issue of certain drugs, other than not being able to sign off items which have not been recognised by NICE due to high cost. I still have difficulty in reconciling that the pharmaceutical companies successfully produce effective medicines which they then charge exhorbitant fees for to cover their research costs so NICE prohibits their use. Surely the costs have been incurred anyway so the companies should accept a reasonable offer? Then at least the companies would get some recompense, eventually balancing the books - but I suspect I am being too simplistic.
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