Advice needed for me with a husband with bronchectasis

[jaynebshp]

Hi. Is anyone else out there with a loved one with this disease. My Hubby is 48 and suffering with extreme exhaustion. Any one else struggle with this?

[Poohpoohmad]

Hi

Have been having tests for this. Am 55 and exhausted like l have never felt

[jaynebshp in reply to Poohpoohmad]

For some reason I can't read of all your message?

[jaynebshp in reply to Poohpoohmad]

Have they advised how to help the tiredness?

[mrsmummy]

We have members who have lived with this for a long time and who will be able to offer advice. In the meantime I just wanted to welcome you to the forum.

[Hidden]

Hi jaynbhsp. I have had bronchiectasis all of my life. There are good days and bad days. It can be very debilitating and also make one feel very downhearted especially when an exacerbation ( infection) is going on and we have to take strong antibiotics in high doses fot quite long periods. They in themselves can make you feel horrible. On other days anything seems achievable.

It can be hard to hold down a job with it because most of us don't look ill and some days we can put in plenty of effort whilst others we are wiped out. It is possible to live a full life with bronch though. It's a case of pacing oneself whilst making sure that the right antibiotics are being taken when needed and the lungs emptied every day. There are quite a few experienced bronchs on here and I hope that they will be along to tell you of their experiences.

[Jonn54]

Hi jaynebshp

I suffer with this aswell its not nice but there are worse things .

Just be there for him and try not to make a big deal of it

Im 55 and struggling but still manage to work and go for a walk every day and trust me the sun still shines

[Claudine]

I was told by a physiotherapist that it's not a disease - it's a condition, which can be managed. You need advice re managing it, which will probably include drugs to thin the mucus so it's to get up. This is important because otherwise it becomes infected if just left there. Exercise is good for stirring it up too. Don't let anyone tell you it's COPD - it's not and should be dealt with differently. Good luck.

[Hidden in reply to Claudine]

Oh Claudine, how wonderful to hear that at least one professional is informing people that bronch is Not a disease but a condition to be lived with. I have spent years and years fighting the description of bronch as a disease and a description of me as a 'sufferer'. Both disease and sufferer are terms which bring the person with bronchiectasis down in the eyes of others and is an awful way to spend one's whole life as I have. It has meant that I have always felt compelled to prove that I can do and contribute as people without bronch and that the nature of it does not make me 'not nice'. Keep up the message Claudine.

[Claudine]

It does seem to be the case though that it can take several years to diagnose. I went for several years with 'asthma', then changed to 'COPD' and only when I got an infection which wouldn't clear did the GP acknowledge it was time for a specialist. He of course did a scan which showed me the pictures of the difference.

Just recovering now from an exacerbation which necessitated the dreaded Cipro for 2 weeks (caught from the recycled air on a plane methinks). Just wondering now when to restart the normal schedule of 3x a week Azithromycin. I guess the Cipro takes a few days to work its way out of the system. Don't want to overload myself! Any comment on this? Would be grateful.

[Cassa37 in reply to Claudine]

Hi Claudine, I also have bronchiectasis, and, unfortunately repeated infections, I was told to take my azithromycin as usual while taking the other prescribed antibiotic, hope this helps🙂

[Claudine in reply to Cassa37]

That's very interesting! Gosh! I need to check now but was thinking of restarting the Azith tomorrow so that it falls into the Mon, Wed, Fri routine again. Must admit it hasn't been made clear to me. The last time I took Cipro was before the Azith routine started. Thank you for that.

[Hidden in reply to Claudine]

Hi, I have been told by my clinic that you need to keep taking Azithramycin with cipro as it has another role working as an anti inflamatory. The only time I had to not take it was when having the aggressive regime for pseudomonas eradication. Then I resumed Azith at the end of it.

[Claudine in reply to Hidden]

Well, I've certainly learnt something today - and not from the medics! Many thanks for that. Too late for me this time round but will remember for the future.

[Hidden in reply to Claudine]

They put me on Cipro and Colymicin after my first Pseudomonas colonization. It gave me Tendonitis, which I was told it might. Can't have it now.

[Claudine]

Which one gave you tendonitis? Cipro or colymicin? Sorry, confused.

[Hidden]

Hi, cipro can give you tendonitis, a real pain as you may then need IV antibiotics instead at the next exacerbation. This is what I was told recently for a flare up of pseudomonas.

[Michaela1965 in reply to Hidden]

Yes I have had it too very bad from cipro, I now can’t take it Ana as I’m allergic to penicillin I can only have IVs ... I have Bronch and colonised pseudomonas, which doesn’t go away it sits dormant in the ready ready to pop up when you least expect it! I have had three lots of IV antibiotics in three months and at the moment I seem ok but it’s only a week since the last lot! I sit and wait to see if it comes back. I’m 52 and was diagnosed with Bronch in January this year. My hospital locally is amazing so I’m very lucky so far. As others have said o think it’s about taking control yourself... hope all out there keep well ❤️ xx

[jaynebshp]

Thankyou for all your replie, but this is a recent diagnoses and is extremely tired and hot and sweating. Is this normal please? It's all so new to me!!

[shouty in reply to jaynebshp]

Me too. recently diagnosed, get very tired some days. if there any chance he could be Anaemic as well as this can make you tired and sweaty

[jaynebshp]

Had bloods done and all seems ok. Very strange . His whole body aches too

[Shaurene]

god he is so Early in age for this. I suffer with bronchitis many time and get very exhausted and short f breath but i am my own cause at lot i am 76 and still smoke. The times i have managed to quit for a few months my breathing has improved so much. He my be very low on Vitamin D & K. Get him vit D3, K and C. Plenty of protien like eggs, chicken and walking.