Living with Asthma and Bronchiectasis

[monkey]

I'm very new to this sort of thing so here goes!! I'm 37 year old lady who was diagnosed with Asthma as a small child I have spent many months in hospital and having lots of different procedures done. I have got used to being an Asthmatic, what I can and can't do what foods to avoid and knowing the particular things that trigger my Asthma off that I try to stay away from. In the latter part of 2010 I kept getting a persistent chest Infection, cough etc after numerous CT Scan and X-rays in July 2011 I was diagnosed with Bronchiectasis finally I have a name to what has been causing me so many Problems with constantly feeling unwell I have been taught all the new breathing exercise's and my medication has been completely changed. Too be honest I'm finding it quite a different experience living with this new condition I'm ill every other month I'm currently on my third batch of Antibiotics and steroids still without any improvement and have been signed off work for the 2nd week. I'm worried that this is it for me now just a lifetime of feeling unwell every other month it's starting to grind me down now and want to get back to how I used to feel. I'm sick off telling people oh I have another infection and I see pity in there eyes, I just want to get my life back on track enjoying every opportunity that comes my way... Any body that has any advise will be gratefully received. Thanks Louise

[Denise1026]

I was like that until they decided to make me take antibiotics all the time. It really does make life more normal again with only occasional blips. I also do various postural drainage exercises which were taught to me by a physiotherapist, The antibiotic is called azithromycin. I regularly see a chest consultant. My worst trigger, believe it or not, is a change in the weather from dry to wet. Keep in touch, Denise

[Maximonkey in reply to Denise1026]

Hi Denise, I have just been diagnosed and I am still ill 3.5 weeks out of 4. The consultant has mention putting me on anti-bio if they cannot stop the infections. Is this what happened to you? If so do you feel normal again once you start taking the anti-bio's? I am so fed up with being ill - I no longer even tell my daughters. I cannot make any plans I just live for the day. I too have found the weather changing makes me feel worse. Maximonkey

[Denise1026 in reply to Maximonkey]

When we first retired here to Tywyn the doctor put the antibiotics on my repeat list so that I could self medicate and eventually my consultant realised that I need them all the time. At first he asked me to have a week off each month but this then became impossible as I went downhill very quickly during the week off. The one I take now has to be taken only 3 days out of 7 as it is good at staying in the system. I am about to learn how to hang upside down to do the drainage as the bronchiectasis has spread to the lower lobes! Denise

[Maximonkey in reply to Denise1026]

Hi Denise 1026, I am overcome by what you have been through, I suppose I am looking of myself in the next months. It is all a shock to know I will never be my old self again. I came out of hospital on March 14 and I had a cocktail of antibiotics to take but I felt the best I have felt in 2.5 years. Unfortunately abt 2 weeks later I had an asthma attack and was back on steriods, back came the cough and now I feel I am back to sq one. I feel isolated so I have made a pact with myself to join some groups. Even if they do not work out I have tried. I took up quilting when I was first ill and altho I have missed many lessons due to illhealth it has awakened my love of sewing and knitting again. Things I had given up as I was too busy working and being a wife and mum. I hope to rediscover more hobbies. and to fight loneliness. Keep smiling. Maximonkey

[Denise1026]

Just hang on to the knowledge that this is a condition you can live with, if properly controlled you should feel normal most of the time. I do lots of exercise as my consultant said it is important; I have joined an exercise class and go to the fitness room 3 or 4 times a week; it all helps to strengthen the breathing and helps the expulsion of gunge. I have made lots more friends through the exercise activities. The only thing that makes me gasp for breath is exercise up steep gradients and stairs but other than that I am getting very fit. Ask your doctor about exercise: he may refer you to a special programme. Good luck!

[Maximonkey in reply to Denise1026]

Great you are getting fitter Denise, I was going to aqua aerobics and I felt really good but then I began on the roundabout of infection, well infection, asthma and so on. A senior nurse told me to go back to aqua but not to shower in the baths to dry and dress and go home for a shower, this way I should get fitter but not reinfect myself. I have not felt well enough to try since I received this advice but after reading your blog I feel I should try and go swimming asap. Thanks for the inspiration.

Maximonkey

[Maximonkey]

Hi Louise, I understand, I have been ill for over 2yrs and not known what it was. I just felt I was so ill I was fading away and not myself. Now I know I have bronchiectasis - at first I was devastated but my nurse assured me I will get better than I am now. I await confirmation from my consultant. in the meantime I am trying to keep my spirits up. I no longer work but I can understand how worried you must be about your job. As I am still learning about this illness I cannot help you but I wish you all the luck. I too feel people are feeling sorry for me all the time so I have stopped telling people about my illness just say I am fine today and try to be a listener, I have realised that everyone has their health problems but they do not want to talk about them. I am so glad I can speak to you folks and learn. Please try and keep smiling. Maximonkey

[monkey]

Maximonkey/Denise 1026

Thank you very much for your comments. I was having a bad day when I wrote my blog!! But I'm now feeling much more positive. Whats adding to my frustration is I have Plantar Fasciitis which is a damaged Achilles Tendon!! I'm currently waiting to see a foot surgeon (18th May). This stops me from doing any exercise even walking is a problem.I think I've got myself into catch 22 I want to do the exercise to help improve my lungs but my foot is stopping me. I had scan yesterday to see if the Bronchiectasis had spread and walked to and from the hosptial which did help to remove the mucus but was then in agony all evening with my foot in a bowl of Ice!! But on the more positive side I'm feeling so much better today. The only other thing that concerns me is that I have now been discharged from the chest clinic is this what its like for other people?? I do see a physio who is based at my doctors surgery who helps with all the breathing techniques. I am due to see my GP next week so will discuss with her about being on antibiotics full time and see if she thinks this is right for me .

Keep in touch!! thanks again