Any advice gratefully recieved..Bronchiectasis exacerbation?

[JetJet]

Good Morning all, just wanted to seek some help from those in the know ( albeit not medically trained).

Mum is 94, started going downhill 8 weeks or so ago, tired, more short of breath than normal and sputum hard to clear and change of colour.

Started her Co-amoxiclav but 8 days on no improvement so saw GP and he tried Doxy and said to start steroids too.

3 days later, even worse, 'fighting' to breath and even worse at night when lying down with oxygen levels dropping to mid to high 80s but usually low to mid 90s.

At 4am I had a call toast for help and we called an ambulance. Said vitals not bad at all but Mum demonstrated what happened when she lay down at which point oxygen dropped and they admitted her.

Oxygen off and on for first 48 hours. Her first time using a nebuliser. IV antibiotics. 5 days in hospital, got a little better but exhausted and still coughing, also found Artierial Fibrulatiin so now also on a water pill. She already had low phosphate and low platelet count and signs of infections ( think the count was 18)? Sputum sample showed candida only. Sent home with 3 days supply of Co-amoxiclav and prednisolone. She was 'better' for a few days but slowly deteriorated again.

I called Luton and Dunstable where she sees the respiratory team for Bronchiectasis and they saw her immediately. Ran more tests and bloods and sputum. They felt that she had not had a full 14 day course of Co-amoxiclav so started that again and another round of steroids and gave her a nebuliser to take home and she was asking two pods of saline 4 x a day in edition to Erdotin to break down mucus. Improvements were finally seen but think body exhausted. Less breathless most days. Now finished all steroids and ABs apart from Azithromycin 3 x a week as her usual defence. Also finished Erdotin and back on NACSYS as cannot tolerate carbosteine.

She is keeping the nebuliser and doing 3 times a day. Have had a letter on Friday to say more bloods required as platelet level still at 80 ( not the expected 150 to 400). Infection level is dropping.

For anyone still reading though ( apologies- i feel better explaining it all to you guys) I am worried as I am sure Little Pom has said Azithromycin can cause AF. I am unsure that blood thinners are safer for her than having AF? Does anyone live with Bronchiectasis without regular weekly antibiotics. Also as a first time nebuliser user what is a standard usage per day, she hasn't been told but I have asked for a repeat prescription rather than just the 6 days she was told to.use it for. I definitely feel this is helping as cough and breathlessness better but she has started coughing up coloured sputum again, could this be old stuff working it's way out from the depths as it had gone clearer or has an infection started again?

New blood test to be done next week to check platelets.

Apologies everyone, just trying to juggle meds so they don't do more harm than good and worried that infection is returning. Is it common to take months to recover from an infection/ exacerbation?

So sorry for the length of this!!

[peege]

Hi - no need to apologise for lengthy explanation. I can barely help at all however my good friend and next-door neighbour, 84, has had AF for quite some time. She has always taken blood thinners for it. She's just very aware of what she can and can't take (recent back injury was tricky re painkillers) whilst on blood thinner, she has very regular checks at surgery to check AF & it'it's medication .

I believe that according to N.I.C.E Guidelines that two weeks of a good antibiotic is recommended for patients with bronchiectasis.

The best advice I can recommend is to contact the excellent helpline. On 00300 555 2800 uk office hours, OR copy your post in to an email to them OR as a WhatsApp message. The details should be under 'Help' above. ......... congratulations on being such a knowledgeable, diligent and caring son or daughter 💙

PS if mum is still coughing a lot it could be the excess mucus bronchiectasis causes & her body trying to get it up. If physiotherapy sessions to expel it aren't possible then perhaps using an Aerobika might help (check with medics) or raising the head end of her bed may help - you can buy bed raisers or try to obtain via NHS. Some people use a foam wedge to raise upper body. It does take a while to recover from a severe infection & if it began with a virus there are some very horrible ones about, I caught one over xmas & still very fatigued & short of breath 3 months later.

[JetJet in reply to peege]

Thank you Peege. I get the impression that the GP and nurse at local surgery aren't convinced blood thinners best thing for her. The hospital she was admitted to said they will do a follow up ECG. She saw a heart consultant a couple of years ago and he didn't spot anything so wonder if it is the Azithromycin causing it. Can but ask. Fearful that if Mum fell then bleeding could be a problem. I am her youngest daughter of 4 and seem to be the one that has taken the reins as best I can!! Thank you for responding, have a good Sunday.

[peege in reply to JetJet]

I added a PS above.....wishing you and mum all the best. Do contact the helpline- they're medically qualified and will give guidance on taking to mum's medics . P

[JetJet in reply to peege]

Thank you so much. She does have a wedge under bed and uses an Aerobika. She also takes anti acid as appears to have silent reflux that also causes difficulty breathing as night. Just so many things to juggle. I am sure she has had the stuffing knocked out of her and yes so many nasty bugs about. Take care

[Hidden]

First of all PLEASE Do not put words into my mouth. I did Not say that azith causes AF but that I had to stop azith BECAUSE I had developed AF. This was decided by my consultant. There is some warning about azith and AF but it was not proved that it caused my AF

I am really sorry that your Mum is having such a hard time. I think that the respiratory team are right. She has had insufficient antibiotic treatment for too long which has allowed things to get out of hand. Also co- amoxyclav may not be the right antibiotic. If she has pseudomonas in there only ciproxin will work She could also have a fungus.Lab tests are notoriously inaccurate. Pseudomonas takes a long time to grow and tests often come back negative. I m surprised that they did not give her IV antibiotics to give whatever it is a clear out. I suggest that you get back to the respiratory team asap and tell them that the treatment they gave has proved insufficient, that your Mum is deteriorating rapidly with signs of a serious exacerbation and needs to be seen now. Don't let it slide. They need to be looking more thoroughly to find the cause.

I don't take blood thinners because I have compromised veins in my lungs and risk of bleeding. I nebulise 0.9% isotonic saline and salbutamol once per day long term which helps to thin the mucus and keeps me stable. I cannot tolerate carbocisteine or nacsys. The usual dosage for saline neb is twice per day.

Platelets can drop whenever antibiotics are taken or given by I V but usually come back up again. You need to talk to the respiratory team about this because the hospital are seeing them out of context.

Your Mum needs serious attention to stabilise her and I'm afraid that you are going to have to push and nag until she gets it.

Good luck

[JetJet in reply to Hidden]

Sorry LittlePom, I should have re read your post but I just recalled that you had mentioned something. Apologies. Mum cannot tolerate Ciprofloxacin sadly. They did also test for aspergillus (?) . I will arrange to take her back tmrw for her bloods and speak with the respiratory team. They at least seem supportive so am sure will help further. Will also discuss with GP if blood thinners more dangerous than the AF. She would happily be medicine free. Thank you for help re nebuliser.

[Hidden in reply to JetJet]

If she can't tolerate cipro there are several IV abs that she can have followed by nebulised antibiotic long term to keep her stable. Some people take doxicyclin for pseudo but it is not always effective. I think that you should be looking for a bronch specialist for your Mum. They are the only people who really know what they are doing with it.

[JetJet in reply to Hidden]

Thank you LittlePom. I seem to have lost my response! I believe that Mum is seeing someone who specialises in Bronchiectasis, COPD and Tuberculosis? She was unable to see him this time but I will request her annual meeting when we go and have bloods this week. Thank you as always for your advice. She was on an IV during her hospital stay but I will speak to the 'team' this week. Is it possible to have IV done at home if community nurse has availability? Thank you again

[Hidden in reply to JetJet]

Yes it is possible to have IV at home, especially if you are confident enough to do it yourself. It depends on arrangements in your area. Don't wait for the appointment. Ring the bronch specialist's secretary and get a message to him that your Mum is in trouble. The secretaries are usually very nice and helpful.

[JetJet in reply to Hidden]

The secretaries are amazing and got Mum seen 2 weeks ago on the same day but not by the specialist as he was away. I will contact them tmrw and say that her sputum seems to be returning back to yellow from white . I was just unsure if this could be loitering from the depths. Thank you again.

[JetJet in reply to JetJet]

You really are a life line for us all. Your help and support is so much appreciated. X

[Hidden in reply to JetJet]

It's not loitering it's partying. Get it clobbered before it goes green. You are a fantastic daughter. Your Mum is very lucky to have you fighting her corner.x

[JetJet in reply to Hidden]

I don't want it to party! It needs to put its nasty little feet up or.leave the party. Thank you. No doubt I will be back asking for help again x

[Hidden in reply to JetJet]

☺️ anytime.

[Alberta56]

So sorry you have this worry. You are battling heroically for your poor mum. It does take a long time to get over an infection, especially if you are old and frail. Best of luck in getting her the best treatment and best wishes to both of you. xxx

[JetJet in reply to Alberta56]

Hi Alberta56, we are banned from using the F word! She may be older but does not see herself as frail and was highly offended when my partner described her as such. She is a tough old bird but everything is taking its toll and quality of life not as she would.like. She was a PE teacher who loved/loves all sports but sadly trapped in a failing body but bright mind!

[Alberta56 in reply to JetJet]

Apologies for the f word. I hope I will be a tough old bird when I get to 94, if I ever get that far.

[djbctla]

Hi JetJet,

Your Mum is lucky to have u and you deserve the best of everything yourself.

Bernardine 🌹

[JetJet in reply to djbctla]

Thank you so much, she is a great Mum and Grandmother, just trying to fix her as best we can x

[Digger0]

My Resp consultant said that if I need extra AB's I should have 14 days supply. Remember that you mum will take a while to improve as she has been poorly for 8 weeks or so, so thing will take a while to get back to normal. I can't help with the nebuliser as i have only had them in hospital, but try feeding her up with little and often. I lost over 9kg when I had the dreaded pneumonia 3 years ago (I was only ill for 2 weeks at home and 2 in hospital) but it took ages to get my strength back. With most people it can take 6 months to recover from the same as your mum. Hugs to you both

List of improvement times

[JetJet in reply to Digger0]

Thank you Digger, yes it makes total sense that she will take time to recover and she doesn't sleep well which doesn't help as always exhausted. I think the swapping and changing antibiotics didn't help but she has now had her 14 days of Co-amoxiclav. Will get more bloods done and see if inflection level has dropped and talk to them re sputum changing again. Her appetite is not great but she will eat little and often and drinks plenty if fluid. Thank you again, that chart is quite useful as a reminder that recovery is not quick.

[Digger0 in reply to JetJet]

I used to have thick creamy yoghurts and chocolate buttons - not at the same time I hasten to add! The buttons I could have 1 at a time and just suck them till they melted. xx

[Izb1]

I cant add anything to the wonderful advice you have received on here but wanted to say what a lovely daughter you are looking after your Mum so well. I am the youngest of 4 and it fell to me when Mum got old and sick and I was still working so found it really hard not just physically but emotionally to deal with all the worries you go through as well as fighting the system to get things done. I dont have a partner so nobody to discuss things with makes it harder. I hope your Mum starts to feel better soon and things ease a little x

[JetJet in reply to Izb1]

Thank you. We will get there I am sure. Yes I know what juggling feels like. My daughter is 12 so sometimes I feel she misses out as I spend a lot of time caring. I also find Bronchiectasis such a tricky condition. Mum isn't great at listening to her body so I watch her like a hawk looking for signs of the next UTI or infection but she always says she us fine...then we reach crisis point if I don't step in quickly enough. Anyway, rambling now. Thank you x

[Digger0 in reply to JetJet]

Remember, your mum is of an age where they just get on with it! She was 0ver 30 when the NHS was started!

[watergazer]

morning. I have bronchiectasis with asthma. I recently had to have 3 weeks of doxycycline to get rid of the partying bugs. My Gp said I could take it for 3 weeks and as I had recurring flare ups I thought it best to do this. I seem to be ok now Usually I only take my fostairnexthaler daily and no other meds. Hope your mum is feeling better soon xx

[JetJet in reply to watergazer]

Thank you. So no regular antibiotics as prevention? I know somepeople just use in winter months. Hard to know what to do.

[watergazer in reply to JetJet]

It depends on how poorly you get as to whether you need regular antibiotics during winter. I don’t usually need them however this winter I had to have 3 doses of antibiotics. I’ve found doxycycline suits getting rid of the bacteria I get take care x x