post H1N1[swine flu] long term symptoms

in 2009 i had severe swine flu. since them i have eventually been diagnosed with mild adult aquired tracheomalacia [post bronchoscopy] and mild bronchiectasis [ct scan]. Before swine flu I was fit and healthy -Since having swine flu I have shortness of breath after about 20 minutes of walking up a small incline, constant clearing of the throat - mucus stuff, fatigue, poor sleeping, rib area pain,I cough and choke especially in humidity and any smokey areas- bonfires, around smokers, chimney smoke etc . The respiratory specialist initially diagnosed me with asthma and chronic nasal polyps - had an op for that - no difference/change. Puffers didn't work for me. For years I have been trying to find someone like me. S.O.S. Anyone???

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  • Welcome to this brilliant forum. I can so identify with your frustration. What is tracheomalacia? A disease of the trachea? Several members here have bronchiectasis and will help and advise you. And we really all here, whatever our conditions, to offer support.

    All the best and keep in touch

    K

  • tracheomalacia is a rare condition in adults [more common in children]. The walls of the airway [specifically trachea and bronchi] are weak. This can cause the airway to be narrow and collapse. The condition is typically progressive in time and can be caused by things like trauma, chronic inflammation. Mine- post H1N1 influenza is mild, thankfully - gives me a wheeze/crackle noise at night, often cough and choke if there is smoke around, constant clearing of throat etc. It is best diagnosed with bronchoscopy as often it is missed in a CT scan - thats because the tracheal collapse is seen more on expiration not inspiration [as often happens with a ct]. For this condition a CT on inspiration and on expiration should be done and then compared.

    Mine is called Adult Aquired Tracheomalacia or secondary TM

    The one picked up in children is called congenital TM

  • I have bronchiectasis and can identify with fatigue, mucous, cough, rib area pain, that getsme down the most. Fatigue has been worse lately, put it down to this warm weather. Trachiomalacia is unknown to me so can't help there. You were very unlucky to get these conditions from swine flu, wonder how common that is, iris x

  • Hi and a very warm welcome to you.

    I had severe H1N1 too in 2009 and was hospitalised but it was not the cause of my bronchiectasis as I already had bronch, since I was a baby. Is there anything specific about bronchiectasis which you would like to ask? As Katinka says there are a few folks on here with bronch who will be more than happy to advise and support you. No experience of tracheomalacia I don't think.

    Love cx

  • Thanks for the reply - I know a fair bit about bronchiectasis but wanted to know if someone out there has been diagnosed with it post influenza in particular H1N1. Thanks. Regards Elaine

  • It's a no for me. BE followed double pneumonia and whooping cough as a baby and a double whammy following measles aged 19.

    cx

  • thanks for the reply - cheers

  • Hi I also had a virus that attacked my respiratory system & left me struggling. I have Tracheobronchomalucia as my bronchi have also collapsed I also have bronchiectasis & VCD - vocal chord dusfunction caused by the tbm this causes severe attacks like asthma but unlike astma you cannot get air in at all it can be very frightening & smells, heat, strong pefumes are all triggers to an attack that starts with a choking feeling. Sadly there is no cure to either condition and the BLF do not support either condition! I am in the process of setting up a support group for tm & tbm pm me and ill give you the details.

  • thanks for the reply - there is a facebook page for kids TM. Thats all I could find

  • I have tracheobronchomalacia and bronchiectasis and thanks to my forward thinking respiratory consultant in the U.K. have recently been put on CPAP - usually a treatment for sleep apnoea! which has dramatically changed my condition. My o2 sats were dropping seriously low - into the 70's thankfully after using CPAP they are back into the low 90's a much more acceptable level.

    I can wholly recommend this treatment which I believe has recently been researched in America.

  • Don't know about BLF with regards to TM but I have to say with regards to BE BLF have and are doing so much more than they used to re information and funding eg. co-organising the recent meeting in London Medicine and Me, which was specifically for BE and had consultants and physios at the top of their game speaking. I think BE has and is having a much higher profile than it ever has (that's still not saying much in 2017, as I agree it has been a very neglected condition for many years).

    cx

  • couldn't agree more. The first world bronchiectasis conference was only held last year 2016. I think that bronchiectasis has usually been put under the umbrella of asthma or COPD. Its only just coming to the fore.

  • Yes isn't it amazing it has taken so long for the 1st World Bronchiectasis Conference to take place in 2016 - I have waited all my bronchie life for this to happen. I had a role within the ERS/ELF with the Patient Group and would have been at the 2nd World Bronchi Conference in Milan last week but 2 weeks ago, after 18 months with them, I withdrew from the role for personal reasons. There is much going on within the bronchie field at long last. There will be another meeting in September in Milan, The International Respiratory Congress. I went to the one in London last year to our meeting and one regarding EMBARC but of course I will not be at the Sep one, although there are some really good folk working on our behalf.

    Love cx

  • Hi Coffdrop I have spoken to BLF in great detail over a lengthy period of time and they dont support rare lung conditions like Tm, Tbm, Vcd and I was told that they dont and many others they do not support all lung conditions as they are only a small charity. I personally found this hard to believe as they are called the british lung foundation but not there for everyone!! I asked if they would create a link for me on their website to set something up for rare conditions & after much conversation this was agreed last year but nothing has been created yet. Therefore I am working at setting up a website & a lung support group for dynnamic airway disease and to raise funds & get support set up for those not covered by the BLF & funding for research. The Ers on the other hand were more than happy to work along side & start supporting these conditions

  • Hi Joolz

    Apologies I misread your post, thinking you were referring to TM and Bronchiectasis but on re-reading I realise you were referring to TM and VCD. I have always and still do to some extent find it very frustrating how slowly over the years BE has come to the fore but I can't imagine just how frustrating it must be for you and for other people dealing with these lesser known but just as difficult to live with conditions.

    I find your efforts to raise awareness and funding inspirational and I wish you well with your endeavours. I wonder if there will be anything re DAD included at this years resp congress.

    Good luck and please let us know how you get on with this. I am sure we are all rooting for you.

    love cx

  • There was a huge error with that vaccine. I had my asthma condition deteriorate drastically after having it that vaccine. My whole immune system just crashed.

    I'm glad you posted this topic as it's kind of a gut feeling of mine that that vaccine made my body just gradually become autoimmune like it is now.

  • I'm so sorry to hear this Weezer - very concerning for you.

    cx

  • Sad thing is when you realise it was that one split second decision that cost me 8 years of stressful medical conditions (flares) and my life totally altered.

    Just for a precautionary vaccination I should have actually waited to see if I even got it instead of agreeing so readily.

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