post H1N1[swine flu] long term symptoms

[LaneyH]

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???

[Katinka46]

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

[LaneyH in reply to Katinka46]

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

[Lyd12]

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

[cofdrop-UK]

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

[LaneyH]

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

[cofdrop-UK in reply to LaneyH]

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

[LaneyH in reply to cofdrop-UK]

thanks for the reply - cheers

[Hidden]

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.

[LaneyH in reply to Hidden]

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

[Sued1958 in reply to Hidden]

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.

[cofdrop-UK in reply to Hidden]

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

[LaneyH in reply to cofdrop-UK]

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.

[cofdrop-UK in reply to LaneyH]

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

[Hidden in reply to cofdrop-UK]

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

[cofdrop-UK in reply to Hidden]

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

[Gillukpong in reply to Hidden]

Omg I cannot believe u have the same symtoms as me, I have a voice problem for 15 months now, they gave looked and said I have nothing wrong, but when I lift my right arm up I cannot get any words out of my throat! I have attacks similar to asthma but I have told everyone I know what I have is not asthma, heat and cold will set it off, if I do to much pyshically I cannot talk, and sound like I serious laryngitis, I'm physically tired every day, I'm under a respiratory doctor again but I'm happy to see I'm not alone.

[Hidden]

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.

[cofdrop-UK in reply to Hidden]

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

cx

[Hidden in reply to cofdrop-UK]

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.

[sultana35]

hi i am suffering the same thing .... after 2009 swine flu. dr. giving me astema puffs meds but that r not working for me. befor swine flue i dont have any breeth prob. now a days i cant anything bcoz of breath prob....

[LaneyH in reply to sultana35]

Have you been diagnosed with bronchiectasis or tracheomalacia post swine fly??

[Gillukpong]

Hi laneyH, I would love it if u are still able to reply to my post. I too got the swine flu in 2009, was fit and healthy previous to that, could work 12 hour shifts on my feet all day, no problem.

After getting the swine flu my life totally changed.

Couldn't do anything without getting out of breath, diagnosed with asthma ',well controlled' given inhalers, had physio, little improvement, then had to change my job.

Continued to live like that for several years, but now I'm seriously out of breath on everything I do. I now have a problem with my voice and cannot talk well, if I raise my right arm, I cannot get any words out at all. Under respiratory doctors again. I too have rib pain, in right lung, fatigue every day, congestion on my worst days I cannot even think bcs I am so tired and heaving for breath, I'm on another inhaler duorispo and it is not doing anything, I was on seretide which helped but stopped working, and now for the last 15 months have been like this, asthma attacks often, tiredness coughing, cannot breath in temperatures of heat or cold. Not allergic to pets, out of breath on walking talking, doing housework, anything heavier than light housework, I'm laid up in bed for days bcs of exhaustion. I thought I was alone, but happy to find out someone like me.

[LaneyH in reply to Gillukpong]

Have you had a CT scan to confirm any bronchiectasis.

[LaneyH in reply to Gillukpong]

Ps a chest CT needs to be done to confirm bronchiectasis. Bronchoscopy to confirm tracheomalacia. Have you had this confirmed yet.

[ONYM]

Hi everyone. Late to this thread but was diagnosed with tracheomalacia earlier this year and share similar frustrations as to lack of support, funding and information out there for adults with tracheomalacia. Would be more than happy to help organise groups and so whatever needed to get the message out there. I've started a blog to share experiences of the condition and trying to find others. It's still early days for me but feel quite powerless and just want to raise awareness in any way I can. The blog is anomaly anomaly.wordpress.com but would love to chat via DM.

Hope you're all as well as can be at this time of year.

[Sierra40]

Back in 2009 I took the H1N1 VACCINE and life changed for me dramatically. I was a healthy and walked 50+ km a week. I had a reaction within a few hours of the vaccine that caused massive swelling in the arm up to my face. I developed pneumonia 2 days later. After 7 courses of antibiotics & 2 courses of Prednisone over 6 months I was diagnosed with Asthma. My lugs never cleared up with these treatments. I was tried on many puffers and Singular but I lost 50% of my lung capacity and never recovered. I can no longer walk outside without feeling like I'm going to have a heart attack. Walking flights of stairs is exhausting ( pre vaccine I hiked mountains). I coughed for 2.5 years and never thought I would stop. I can lose my voice for up to 5 days a time. I can't tolerate wood smoke or sitting around the fire pit without feeling like I'm losing my breath. I had no prior illness and I never get colds or flu's. I only took the vaccine because I worked in health care.Three years in I finally saw a a respirologist who told me my asthma was severe and if I has the actual virus I probably would have died. I never truly believed I was diagnosed accurately and the meds haven't been greatly effective. Reading these responses have got me thinking.....thanks for sharing.