How often do you get pneumonia in a year with bronchiectasis?

[KitKat1954]

I am curious to see how I compare with others who suffer from bronchiectasis. So far, I have had pneumonia 3 X in an eight-month period. It seems like a lot. My last sputum test in June 2022 showed stenotrophonoma and aspergillus. I do lung clearance once daily and Ventolin 2X a day. Also, Breo Ellipta for asthma, Flonase and Allegra. I eat healthy and exercise.

[peege]

I would think your immunity/resistance is very low now plus the possibility that the bacteria wasn't killed off with a decent antibiotic, adequate dosage and a given over a long enough period of time. I had it 5 times in 18 months 2012/13 until the respiratory nurse at an asthma review asked why I hadn't been offered the pneumonia vaccination. I've not had it since to my knowledge. Peege

[KitKat1954 in reply to peege]

Thank you Peege. In April I was hospitalized for 3 days and on intravenous vancomycin and left with a 10 day prescription for Levaquin. It did help a lot - it cleared up my mucous plugs and my breathing returned to fairly normal, so they did try their best. I had a pneumonia shot about 7 yrs. ago, and then the newer version 2 yrs. ago. So obviously that's doing nothing for me in my case. The stenotrophonoma is very hard to get rid of from what I understand. This time I had 750 mg. Levaquin for 2 weeks. I guess I am cursed.

[peege in reply to KitKat1954]

Oh dear, it does seem as though they did their best. Do you take vitamins, minerals or supplements?

[KitKat1954 in reply to peege]

I take probiotic, vitamin D 850, vitamin C 1000, Mucinex 500 (not DM) and multi. Any suggestions?

[peege in reply to KitKat1954]

Similar to me then, I do as much as possible to boost my immune system to fight off colds, coughs that would go straight to lungs. Daily I take 2000iu of D3 plus K2 to ensure plenty of the D gets to osteopenic bones. A multivit/minerals, I'll drink 1000mg of vitamin C at the 1st sign of a snuffle at least twice daily which seems to work really well. Also to combat bugs getting down airways from a sore throat I use an antiseptic throat spray to kill off the buggers. I take a few other bits n bobs for arthritis and CFS (CFS the result of too many pneumonia & infections).The only thing I can think of is do you expel all your excess lung mucous daily?

[KitKat1954 in reply to peege]

Yes, sometimes I'm spending 2 hrs on clearance. I haven't had a cold or sore throat for 4 yrs. It must be the steno just growing in me.

[Patk1 in reply to KitKat1954]

I would do yr lung clearance at least twice a day,so it shouldnt take as long.ersonally,i do shorter sessions 2hourly as im aware its there and im pretty expert at popping to loo,if ith anyone,and getting it up.if its in lungs,and only clearing once,its time to get hold.Peeges other advice is great x

[Hidden in reply to Patk1]

Same as me! It's the only way I can live a normal life. I have had this argument with physios and docs all of my life.

[KitKat1954 in reply to Patk1]

Thanks Patk, I think I do need the 2X day for clearance.

[peege in reply to KitKat1954]

It's great about lack of sore throats & colds, same here. It shows our regime works.It does seem as though the steno is lurking. Im surprised the pneumonia vaccine didn't protect you, it's like the flu jab in covering the most likely bugs so not 100%.

If you're in the UK why not give the helpline a call, they might have some advice. All the best. P

[Patk1 in reply to peege]

I dont respong well to differe0nt pneumococcal vaccines & get v little ptotection from them

[KitKat1954 in reply to peege]

Thanks peege. I am in the states, but I will call my pulmonologist. Yes, the steno is lurking because even Vancomycin didn't kill it in April.

[peege in reply to KitKat1954]

Several members who have bronch and colonised with stubborn bacteria seem to get strong antibiotics via IV . I'm so sorry we can't help much & really hope your medics help you out ××

[KitKat1954 in reply to peege]

Thank you so much for your reply. I am hoping they can do something for me. I am in area of excellent hospitals and medical care so I'm grateful for that anyway.

[Maricopa in reply to KitKat1954]

Those are strong antibiotics.

[Pipswhips in reply to KitKat1954]

They are several varients of pneumonia its like flu jab it dosent stop it all. But it does stop you getting it really bad and end up in icu or hdu in hospital mine was health care associated pneumonia they said.

[Hidden]

I have only had pneumonia once since I began proper management for my bronch in 1956 aged 6. I caught a a community aquired pneumonia in 2015. I agree with peege that the treatment for your pneumonias was not sufficient to see it off.. Also that you should get your GP to give you the pneumonia vaccine which covers against a lot of strains.

[KitKat1954 in reply to Hidden]

Thanks so much for your reply Littlepom. I always appreciate what you have to say.

[Batman1313]

I do not get that at all, thankfully.

[Firefly25]

It does seem like a lot. I started nebulising twice daily with 7% hypertonic saline in the spring followed immediately by airway clearance. Apart from the setback of getting Covid in June 😢 which went to my lungs, I generally stay pretty healthy. I’m sure that airway clearance is key- I like to think of there being nothing there for the bugs to multiply in! Do you take anything like carbocisteine? Take care x

[KitKat1954 in reply to Firefly25]

That's good to hear and I think you are right about lung clearance. I don't believe I can get carbocisteine here in the States. Maybe there is something similar. Thanks Firefly and keep healthy!

[Sutton5]

Can you get the pneumonia Jag? It lasts 10 years I think, It has saved my life a few times and just needed 2 sorts of antibiotics to clear it after IV, Still I felt the recovery long Take Care

[KitKat1954 in reply to Sutton5]

Thanks Sutton 5. I have had the new one and the old one. It's done nothing for me unfortunately, but I am going to look into antibiotics as maintenance meds.

[Patk1]

Ps ask them to do an immuity screen too as there r other vaccinations and infusions

[KitKat1954 in reply to Patk1]

Ooh, that's a good idea. Thanks Patk.

[B0xermad]

Hi I had it twice, with pleurisy the 2nd time and it took me 6mths to fully recover even though I was doing all the clearance every day. finally I was put on azithromycin 3 times a week and have been since. plus changed carbocysteine to nacsys 600mg effervescent tablets once a day for loosening the mucus and fingers crossed been free of bugs so far for 2yrs.I grew influenzae haemophillis bugs which caused pneumonia and bordered on sepsis.I wish you well

[KitKat1954 in reply to B0xermad]

Thanks B0xermad. It's good to know there are options out there for this.

[Rattle]

I had pneuomonia for a long time back in 2010, but haven’t had it since.I have asthma and sinus problems too, like you and take pulmicort (steroid inhaler twice a day) mometasone (steroid nose spray) and bricanyl (blue reliever inhaler) only when needed.

Like many here I also take vitamin C, D and multivitamin.

To help me sinuses I do saline rinses twice a day with a Neilmed bottle - I find that and sinus surgery has helped a lot in keeping me well. Hardly get colds, chest infections even.

Also: Exercising!

I stopped working 2 years ago and now have more time to work on my health. I walk, swim and ride a bike about 1,5-2 hours a day.

That has also helped my longs get stronger and makes it easier to clear them.

I appreciate not everyone is feeling strong or fit enough for that amount of exercising- but I didn’t start at that level!

Anything that involves moving and getting the heart beat a bit faster is a plus.

Hope you can get on top of your problems soon x

[KitKat1954 in reply to Rattle]

Thanks Rattle. I too, am retired fortunately as I wouldn't be able to take care of myself if I was working. I like to swim, walk and do yoga. Best.

[gingermusic]

I suffer from Bronchiectasis but have never had Pneumonia at all

[Digger0]

Hi, before I was correctly diagnosed I'd have 5 or more really fruity chest infections a year with collapsed lobes etc. Since bing diagnosed I'm on Azithromycin Mon, Wed and Fri every week and have been fine for over a year

[KitKat1954 in reply to Digger0]

Thanks Digger. I think I am at the point now too and will discuss with Pulmonologist.

[MoyB]

I have bronchiectasis and asthma. (I don't know if I've got COPD or not at the moment as having been told for years that I do, I now have people telling me that I have 'fixed airway disease' and not COPD after all. Still awaiting clarification re this).

I get three or more infections a year - not all pneumonia but some have been diagnosed as that, despite having had the pneumonia jab.

My consultant is not happy with three infections a year ie he thinks it's too many (and so do I!). I haven't always been given a name for the bug causing the problem, but know I've had morixella, pseudomonas and a number of other different ones, so they do sneak in and have a party when they can!

I know that lung clearance is important and there are times when I cough up enough phlegm to fill a glue factory, but I then go for a long time unable to bring up more than a little white lump now and again. The clearance has been easier since being prescribed carbosisteine.

In order to try and reduce the number of infections I have, the consultant has me taking Doxycycline through the winter (Nov - April). He would have put me on Azithromycin several years back but I was having a lot of vertigo then and, as vertigo CAN be a side effect of that med, he decided against it. My vertigo has become much less of an issue now and so he is considering Azithromycin this year if the Cardiology team are in agreement (another possible side effect is irregular heartbeat).

I have evidence now that when my peak flow remains low for more than a few days, it is sign that some little unidentified whatsits have made themselves at home in my lungs. I really do have my consultant on board regarding this which is good as the asthma nurse and GPs (other than my own) don't pay much attention to the peak flow.

Something to think about (if you haven't already) is whether you may be experiencing silent reflux as it is believed to have been the cause of my lung problems. I have a hiatus hernia which makes the reflux more likely, but it is also possible for people without a hernia to experience it. On at least one occasion I was diagnosed with 'aspiration pneumonia' as a result of the reflux seeping into my lungs at night. If you're not already receiving treatment for reflux, you could maybe give Gaviscon Advance a try and see if it makes any difference. Raising the head of your bed a few inches (they recommend between 4" and 6" I think) can also help. There's plenty of info on the net to read if you're not already well versed in it.

It may be that you have something longstanding in your lungs that cannot be cleared completely but can be managed so that you don't become ill with it. If other bugs can be prevented from joining in, that would help.

I hope you are getting good medical support. I believe it is considered that anyone having 3 or more infections a year should be seen by a consultant.

xx Moy

[KitKat1954 in reply to MoyB]

I really appreciate your reply. I actually do have silent reflux and take protonix 2X a day. My pulmonologist felt strongly I am aspirating in to lungs. So, I had the 24-hr. acid reflux test (no fun) but the gastroentologist said it wasn't that bad and I wouldn't benefit from surgery. I even purchased an adjustable bed and changed my diet, using the Acid Reflux Diet book. Yes, I do have stenotrophoma which I can't get rid of and is most likely the problem. I see a bronchiectasis in Sept., but I am going to call my pulmonogist today to discuss. Thanks again Moy.

[MoyB in reply to KitKat1954]

You're welcome! Sorry I wasn't able to offer any help or info that you didn't already know about. You clearly have quite a lot going on and it must be a trial for you.I hope you get some wise words and practical help from your consultant.

Re the reflux issue, I recently lost my voice after it being hoarse for a long time, and it was discovered that the reflux had damaged my larynx. I've since been taking bottle after bottle of Gaviscon Advance (which I detest!) as per the consultant's instruction. I've been taking Lanzoprazole for years already and still have to take that as well. My voice has come back and the quality of it has improved so I guess I will have to continue with the Gaviscon and all my adjustments (the head of the bed, change of diet etc ) like yourself.

I have had this hernia for years. My respiratory consultant says that it is 'very large' and 'incarcerated' so that, he says, 'most of the stomach is now in my chest'. whereas the gastroenterologist describes it as 'moderate size'. It's 2.5cm at the last measurement and I believe they can be a lot bigger. I have asked for an operation but have been refused. I understand that the operation to fix it is much more involved than it might seem to the lay person (i.e. yours truly) and the success rate is not as high as they would like it to be. Therefore it seems to be kept for extreme cases.

The trouble is, I suffer with gastritis, duodenitis, oesophagitis and the acid has damaged my lungs, so I tend to think this is quite extreme - but the medics don't agree!

Good luck with getting things sorted out. Keep us posted, won't you?

xx Moy

[Trustyourmind]

Well I have had pneumonia mostly from aspiration of food particals into my lungs, and had it for 5 straight months. I had a stroke which affected my ability to swollow properly. I could not eat much and was on death's door step, lost weight was over 200 pounds entering the hospital and was 119 upon my discharge. I had to fight for a PEG tube for feeding, and I had a large mass in my lung that needed to be removed but was told I would die during the procedure. I was discharged and the very next day I was critical again could not breathe even with my 02 turned up to 8L on my concentrator.. Any pneumonia is a damage to the human lung, and for older people like me, it really took it's toll on my health over all. I am still fairly weak, have to use a wheel chair for any distance in a building (medical appointments) and I have zero going anywhere in my life like before having the medical conditions COPD, MS, Cancer. I've died 4 times, once at home and 3 times in the Hospital, heart failure, stroke.

On the flip side, I stay positive, have a wonderful loving Wife whom has walked through fire for me and hell and back. Have doggies and one cat, so we have a lot going on just in the home. I miss going to the Casino and going out dancing with my wife.

When you read up all the people here explaining what works for them, you see eventually it seems people find out what works for them or does not work, but you do see interesting "care approaches" for what is medically wrong, etc. It is amazing to see the education self taught on dealing with our lives. I could not say for anyone else to do what I do for my medical care needs as I tend to not depend on any MD to have the answers. In fact the MD's on my health issues have been such a negative impact...it is a shame. Example, losing weight not able to eat or swollow and I had to FIGHT to have a MD approve a PEG tube, I was on death's door and they merely wanted to send me home! I pray for everyone and ask the Lord to bless us all.

[Patk1 in reply to Trustyourmind]

Youve got a lot on Trustyourmind.gd U have yr wife.could u pethaps go in wheelchair with wife,on walks on flat? Might b gd 4u both xxxc

[KitKat1954 in reply to Trustyourmind]

Oh my gosh, that is a lot to deal with. It's so frustrating to have to fight for things that should be a given. You have a great attitude and I wish you the best.

[Maximonkey]

Hi KitKat, sorry to hear you have multiple episodes of pneumonia. Are you taking Azithromycin? I suffered 5 pneumonia bouts before diagnosis 11 years ago and my consultant put me on Azithromycin 3 times weekly I haven't had a bout again. What has your consultant said, have you been hospitalised? If you haven't seen your consultant recently I would try phoning his secretary and asking for an appointment ASAP. Take care and good luck. Maximonkey

[KitKat1954 in reply to Maximonkey]

Thanks for sharing this Max. It's been 7X in the past 2 years. I was hospitalized in April and treated with vancomycin and doxycycline (sp) and then Levaquin after leaving. I think this is great advice and will call my Pulmonologist today.

[Maximonkey in reply to KitKat1954]

Hi KitKat, glad to help. I hope you get an appoint soon. Take care, Maximonkey

[Stratos20]

We’re all different KK. Some of us are living with Bronchiectasis since childhood (I was 5 years old)Some of us have fantastic medical support, some of us don’t.

I take on board what the doctors say. I’m taking Azithromycin and Carbocistine. I tried many antibiotics over the years and now take Doxycycline for infections. I’ll never stop getting infections.

I’ve learned self management works for me. Clearance physio has been the most important part of my life for 68 years. Whether once a day (as it used to be) or 3-4 times a day (as it is now), I just get on with it. I count my blessings.

Be positive KK. We’re here for you. Best wishes Diane

[KitKat1954 in reply to Stratos20]

Thank you so much Diane.

[Pipswhips]

I don't know but i've had pleurisy years ago but two years i had pneumonia. Have you had the pneumonia jab if not i suggest you ask your gp or asthma nurse see if you can have it