seeking advice

[Samye]

Hi everyone,

I am just wondering if anyone has experienced any of the way I am feeling. I am a young at heart 80 year old but feel very down and desperate. I have always just tried to get on with it, but I am really struggling this time.

Following my last flare up over Christmas , for which I needed a 4 week course of antibiotics and prendisilone, to date I am still feeling so weak and exhausted all the time, breathless, and with just the slightest exertion I break out in a sweat, and I generally just do not feel right.

I was diagnosed with Bronchiestasis 8 years ago following a CT scan and was told I had probably always had it following measles as a child, and pleurisy, but it reared its ugly head after my my husband sadly died after me nursing him for four and half years 😢.

since then have I have 4/5 exacerbations a year. I am on azithromycin 3 times a week, plus 2/4 Carbocisteine daily, and Fostair twice daily.

When I have an exacerbation I treat it with my rescue pack 2 weeks amoxicillin and 5 days prendisilone. I see my Consultant every six months, who is excellent at the Bronchiestasis specialist clinic in Liverpool, where they are continually doing trials to help relieve Bronchiestasis.

I would be glad of any words of wisdom, as I am really struggling this time and beginning to wonder if there is something else wrong with me.

Thanks for reading this 🤗

.

[Phill1]

Have you had your sputum tested ? Sounds like you may have a bug that Amoxicillin does not knock out ..

[May7]

Hello Samye, sorry I've taken so long to get back to you, but I get so tired all the time. First of all, I want to say how sorry I am that you had to nurse your husband while suffering from Bronchiectasis, and then to face losing him. No wonder you have felt so low. It all must have weakened your defences. I am no expert on Bronchiectasis, as it is just one of my many conditions brought on suddenly ten years ago, by the autoimmune disease vasculitis. But it is the one which gives me the most day to day problems. It was a whole host of Blood tests which diagnosed the vasculitis, which is rare, as well as the lung disease. Prednisolone amongst others was prescribed, and I have to take it for life. I don't suffer with my Bronchiectasis as much as some people, but it leaves me prone to other lung complications. For instance, during autumn 2023, I caught a bad chest infection which made me suddenly feel suffocated, requiring help in A&E. This resulted in two antibiotics, plus Carbociestine, at 3 x 750mg per day, the latter being continued permanently ever since. I must say, that my mucus has been far better controlled since then, with the Carbociestine. I was also put on the Fostair/Luforbec inhaler. If you are feeling weaker and not quite right, despite your medications, then it would only be right to get checked out for other problems. Does your consultant have a nurse help line or similar, to ring when you are worried? I am under several consultants, and between regular appointments can ring nurses or secretaries to get help or ask questions. If necessary they ask the consultant for advice. Has your Bronchiectasis worsened, or is something else going on? Do you need more blood tests ? You should not suffer alone, and need to find out. BTW, have you had your RSV vaccine? I ask because of your given age, and hope you have this protection. My husband and I had to remind our surgery, because they seemed to have forgotten.

Anyway, good luck with all of this, and let us know how you get on.

Best Wishes May

[Active60]

I wonder if you have had ‘flu? I was feeling like you and the eventual conclusion by my drs was that I had probably had ‘flu. This made sense of the night sweats, listlessness and generally feeling weak and fed up even after my chest cleared. I had the ‘flu jab- but to no avail this year. Just a thought.

[Patk1]

I'd put a specimen in Samye to see if any infections still lurking.im on azithromycin every day as a prophylactic - it maybe an option to discuss with consultant.perhaps ring the helpline mon-fri 9-5pm, to talk over how yr feeling 0300 222 5800. It's worth making appointment with gp,to get Yr chest listened to+ tell thm how U are.get well soon.these flare ups take some getting over xxx