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Newly Diagnosed

Posted , 7 users are following.

margiesgirl
margiesgirl

Hello everybody

firstly can I ask if anyone is near me (Southampton Hampshire UK) it would be good to hear from you if you are 

So a little about me , I have had a productive cough for a little over 2yrs during this time with recurrent chest infections , I do no smoke and never have incidently , I do have an under lining auto immune disease which I have had since 2005 (SLE & Sjogrens), I understand there is a possible predisposition to acquiring bronchiecatsis with SS??

I have recently had an admission to hospital , IV antibiotics, CT scan showed early onset bx , it's also been complicated by growing two funny bugs in my lungs and harder still that the antibiotics which could help I cannot take due to an allergic reaction last year (Steven-Johnsons Syndrome) :-( , it's been quite a journey this past 2yrs to reach a diagnosis 

I don't know anyone else with this condition and understand it isn't very common? 

I'm assuming that the tiredness, exhaustion, headaches , continuous coughing with or without productivity is the pattern? god isn't it just miserable :-( 

I live alone and it has made doing so a bigger challenge these past yrs , I find I have more energy in the mornings rather than the rest of the day does it affect anyone else like this?

I do try and do the breathing excercises but currently just can't seem to get the hang of it 

I was given an Acapella to try from the respiratory team am unsure if I'm doing that correct either 

More Youtube watching me thinks !

Best wishes 

Sharn (not mispelling) 

 

0 likes, 9 replies

9 Replies

  • Gill200
    Gill200 margiesgirl

    Posted

    Hi, I am 70 and have had bronx since I was 9 months old. I acquired pseudomonas  8 years ago which has made the condition much harder to deal with. I do ex as soon as I get up, another short session during the morning and during the evening. The ex I find most useful is postural drainage which is explained on utube. This type of ex I find easier - the head is lower than your backside which, along with deep breathing, leads to automatic drainage of the rubbish off your lungs which is relentless and constant. I never found the acapella much help. Its important not to get tired and to eat a good varied diet. I personally find the really cold weather does not suit my lungs and consequently I stay inside a lot this time of the year. Hope this helps a bit. Regards, Gill
    • margiesgirl
      margiesgirl Gill200

      Posted

      Thank you so much Gill200 for replying , I'm very low at the moment and tearful 

      I've only just come out of hospital but I fear the infection hasn't gone as I feel 

      quite rubbish today with much of the same symptoms I went into hospital with

      will see gp tomorrow morning 

      I will check out the Youtube postural drainage as I have been struggling with 

      the physio exercises given to bring up mucus etc....as to the acepella I'm 

      glad I didn't have to buy one (couldn't believe the price of them) but I haven't

      seen any benefit 

      Best wishes

      Sharn

    • Xxx_xx_xx_xx_xx
      Xxx_xx_xx_xx_xx margiesgirl

      Posted

      I'm new here - just wanted to say I'm sorry you're feeling so downhearted - give yourself some time to recover, take good care of yourself, rest as much as you can. These exacerbations are exhausting. All the best!

    • Gill200
      Gill200 margiesgirl

      Posted

      Dear Sharn, I hope you feel a little better today. Infections can take weeks to get rid of especially this time of the year when warm fresh air is not available. But it is essential to do exercise to get rid of as much rubbish off your chest as poss.  Have you had chance to look up postural drainage? What I do is put a wedge shaped pillow on top of the bed, put several ordinary pillows over that and lay over it making sure your backside is higher than your head so that stuff will automatically drain. Deep breathing also helps. The pillows will need re-piling as they move about, but I find it the easiest and most efficient way to clear my lungs. When I have an exacerbation, it takes weeks after finishing antibiotics to feel reasonable so do be patient, but do do exercise to clear the rubbish and don't get over tired. Also keep your home warm but well ventilated with fresh air. I've gone on a bit so will finish for now. Regards, Gill

  • Gill200
    Gill200 margiesgirl

    Posted

    Dear Sharn,

    Its easy to feel low and miserable during winter months. You never hear in the media about bronx and how difficult it is living with it and the lengths we have to go to to keep our chest clear, which in turn is tiring. I have 2 life long friends and they don't know the lengths I have to go to to keep 'well'.  I spend a lot of time on my own this time of the year because my lungs don't react well to the cold and I stay in. On the positive side, I make lots of vegetable curry (order my food on line), soup and cake so that its more healthy (less sugar) than bought stuff. This is one thing we can do to help our health. The TV  is always on - hate a quiet house. There are some good dramas on at the moment. Must go a do my lunch time exercises - a real bind but do feel better after this session and feel quite clear for the rest of the day,  tho always do some in the evening. Do you get out in these cold months? If not, do you know about taking Vit D3 and calcium - I found I had early osteoporosis 3 years ago, had no symptoms except when I got my height measured I was less than usual. I'm going on a bit but so will say cheerio for now. Regards, Gill

  • aitarg35939
    aitarg35939 margiesgirl

    Posted

    I have SS, SLE and BX. Per both my rheumo & pulmo, there is no connection between those auto-immune diseases & BX. The lung disease that can be a part of Sjogren's is interstitial cystitis. Quite different. This rumor of a connection is currently on this site in the SS forum, but it is a rumor based solely in people with SS assuming that everything that happens to them, including a knock at the door, is due to SS.

    Did anyone familiar with your lungs do the setting on your a capella then make you use it a bunch of times to check your proficiency? It is something that can't be set by watching YouTube. Has to be used many times daily for 5-10 minutes ea. Postural drainage can accomplish the same thing & YouTube is great for that.

    Sjogren's can make our mucus thicker and therefore harder to get up & out. Mention this to your doc/nurse & ask if you need a mucus thinner. I hope you feel better already.

  • Gill200
    Gill200 margiesgirl

    Posted

    Hi, me again. As aitarg said a little while ago, if mucus is thick it makes it hard to get up. My Doctor has prescribed Carbocistein - I take one capsule 4 times a day tho you can take a few more if its stubborn. Whatever you do, I find it different every day - bronc chests are very sensitive to what we do in our daily lives. Regards Gill
  • Forest55
    Forest55 margiesgirl

    Posted

    hi Sharn

    ​I am 62 and live on my own. I have bx since 2011 and my live life has changed so much, had to give up work and become more of a  recluse these days, when you not well all you can do is rest. I read and sleep and eat small meals every 2hrs and exercise by swimming gym and short walks it use to be long walks but now I get breathless. I not to keen on going to my GP as she knows very little about bx so I see my respiratory nurse who has more time. good luck.

    Ian 

  • jondrouve
    jondrouve margiesgirl

    Posted

    Hi Sharon 

    I live in Ringwood, so not far away. I've had bx since my early teens and had half my left lung removed in 1975. It was a very major op in those days (and I have the scar to prove it) but it made a huge difference.

    I know levels of severity differ but I've tried not to let it affect my life as much as possible and try to run, cycle and swim regularly to keep to stay one step ahead! 

    I'm happy to chat if you wish to.

    All the best

    Jon

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