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When and what happened when you were diagnosed?

How did you feel about it?

For me I was 23 years old, I had been in the hospital for over a week each time for the fourth time in a year.. The doctors couldn't figure out why I would be ok then in a matter of 2 days my oxygen would drop to 81 and I couldn't take 3 steps without almost passing out.. After tons of x rays, blood tests, cat scans, and different medications. Finally a doctor came and told me I had bronchiectasis and my life would be forever changed.. At that point I had a 2 year old and a 1 year old! My kids are sidelined as much as I am, I can't run around and be as physical as their friends mommys. Now I am 25 my boys are 4 and 2 1/2 and I just pray I'm not hindering their lives, I wish I could be a more involved and playful mommy

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10 Replies

  • Posted

    Hello introvert I really know how you feel. Luckily I was a great deal older than you when I was diagnosed, but it did change how I lived my life. Please believe me when I say you will adapt to your circumstances. Having small children must make you feel that you will be unable to do all you want to but your children will love you no matter what. I trust you have seen a Physio therapist who will help you to keep your lungs clear With the right help you'll get through it. I send you my very best wishes for the future. Life is full of good days and bad days. Stay strong

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  • Posted

    I am 45 and was diagnosed a year ago ,it's hard coping with bx ,but I try to stay has healthy has I can, even a little walking helps ,I go to the gym when my body is up to it ,but in winter I suffer more bugs so trying to keep infections of your chest is hard,try and stay positive .mixing parenthood is not a easy task when you feel so rough you can only do your best ,you will find other ways to be a good mum other than running round with your kids and I'm sure your a good Mum anyway

    Take care Joanne

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  • Posted

    Hello - I can't remember when I was diagnosed because I was only about 4 when it was diagnosed.  It was a much more common diagnosis in those days because my bronchiectasis was caused by my catching measles when I was a baby.  Measles and whooping cough were two frequent causes in those days (the 1950s, long, long ago!) as there was no vaccination against them then.

    My own mother had a serious heart condition and she couldn't run about and play much but she was a wonderful mother, always engaged in our lives, reading us stories, inventing games, and finding ways to be part of everything even if she couldn't run about.

    I decided not to have children. I was quite ill in my 20s and 30s and it wasn't really a good idea but the person who lives next door to me has bronchiectasis too (there's a lot of us about when you know where to look!) and she had two lively sons and she has brought them up well - they are both in their late teens now.

    You are not hindering the lives of your sons - just keep yourself as well as possible by obeying your doctor.  If you have been shown how to do proper physio to drain the sputum from your lungs that will help you more than anything but I know not everybody is taught this nowadays.  Make sure you cough up all the phlegm and get it away as much as possible.  Rest when you can and drink lots of fluids.  My doctor told me last week that even beer and long gin and tonics count!  A good positive mental attitude helps - the more stressed I am, the more I cough.

    You too can live to be 69 like me!  I worked for over 50 years (admittedly in office positions) and have lived a good life even though I get a lot of infections and all the usual rubbish that goes with bronchiectasis.

    I wish you lots of luck.

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    • Posted

      Hi introvert

      I agree with everything that has been said above. I have had bx since I was two....only diagnosed properly when i was about 30. I'm 66 now. I taught in a primary school for 26 years and raised two children. I had frequent chest infections but always managed to get through them fairly easily. The best way that you can serve your children is to stay as healty as possible. Everything else will flow from that. Exercise (maybe involve your children in that somehow), do your breathing exercises and avoid contact with anyone who has coughs, colds, sore throats etc. You will have a good life with your two children and your grandchildren!! Stay as positive as possible and take heart from the good people who contribute to the forum. Wishing you a good life!

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    • Posted

      operalyn, I am looking some advice. I, like you, have had bx all my life since I was two. Only properly diagnosed when I was about 30. I am now 66. All my life until last summer, I was able to get rid of infections with a single 2 week course of antibiotics. Afterwards, I felt fine and led a full and varied life. This past year however has been quite different. I never seem to get more than a month or 6 weeks at most without a new infection. Sputum is never tolally clear, (although when no infection present I do feel well). Thank goodness no really nasty bugs have come my way! Because of the closeness of our ages, I was wondering if your recent experience is similar to mine or are you in a better place? I know our lungs deteriorate with age and I can't help thinking that age has a lot to do with it. I would be grateful for your comments.

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    • Posted

      I have never had clear sputum for more than about five minutes so maybe I am not able to be much help. I am slightly better than I used to be because I now take montelukast which helps me feel much better. I think I have a certain amount of asthma as well as bronchiectasis so that could be why as montelukast is really an asthma drug. Age may change things - certainly my energy levels are much lower and I get more pain in my chest then I used to. I have colonised pseudomonas in my lungs so I do tend to get quite a lot of infections too. Do you see a chest specialist? If not I would try to persuade your GP to refer you. There's a lot of help out there but it's not always known to GPS. I also think that bronchiectasis patients sometimes just hit a bad patch. I had one three years ago when I just couldn't get right. Got there in the end but it took a lot of Antibiotics and patience on my part.

      Hope you get the help you need.

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    • Posted

      Operalyn, thank you so much for taking the time to reply. Your comments have given me hope that there is light at the end of the tunnel. I don't have asthma thankfully. I do see a chest specialist but even though the appointments are supposed to be at 3 month intervals, it invariably takes more like 5 or 6 months for a return visit. Last appointment was in Feb and no new appointment has come in yet. I am half expecting him to suggest long term antibiotic treatment like azithromycin but am only guessing. Like you say, I just must have hit a bad patch! But your kind words have given me comfort and hope. Thank you and keep well!

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    • Posted

      azithromycin changed my life when I was really poorly with bx.  constant sputum and coughing and very thin.  I've had no problems with being on azithromycin, have come off it a couple of times (pregnany and breast feeding) and have stayed well.  If you are feeling really poorly I would encourage you to try it.

       

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    • Posted

      Hi belabalou, thank you so much for your encouraging words. There is no better advice to be had than from someone who has had first hand experience. Can I ask how long you have been taking az (apart from your baby breaks) and whether you still get odd infections while taking them? If so,  how long on average would you get in between infections? Thank you so much for your interest. Stay well.
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  • Posted

    As a mum of 2 I know your kids will accept and love you as you are.  THe frustration is yours not theirs, so try to let go of it.  As your kids go to school you will hopefully find an amazing mums network and people are usually willing to help if you explain to them why you cant do as much as you would want, they wont be sidelined.  Have courage.
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