Thank you! & Here’s my story...

[Sob_in_oz]

Hi All,

This is my first post and I just wanted to say Thank you. I’ve been reading all your posts for 3 years now and it is the only place I find complete comfort. I’m sure most are aware that this AMAZING community can really lift us when we’re feeling down. Just by sharing your own fears, experiences and illnesses really makes it easier to deal with my own struggle. I know when I can’t sleep at night, scared for the future or confused about my Undiognosed condition (after my husband) this is the place I turn to. So thank you for helping!

Just for a quick run down... I have had Asthma since I was young and stupidly smoked (average 12/day) from 18-34 (on and off) I haven’t touched a cigarette since I quit and never will again!

I started getting sob after my wisdom teeth removal in 2016 (6 months after I quit smoking). I get sick A LOT more than I ever have and just don’t feel right. My sob isn’t all the time but I would say once a month. I have regular phlegm production and cough. I have significantly reduced the amount of exercise, mainly walking and sometimes weights. I used to be a great runner and now the thought of running long distances scares me!

I’ve been to multiple pulmonary specialists, had multiple pft’s, all blood test (alpha 1 etc) , ct scans etc etc and no diagnosis. It’s like I have all the symptoms of mild/moderate copd (bronchitis) but nothing on paper! It’s such a struggle. I’m on symbicort for my asthma and my pulmonary specialist gave me a script for atrovent which I now take daily. I believe that has helped a bit.

I feel that I’m in the early stages and drs can’t diagnose yet. I’m petrified as I have two beautiful young girls 2 & 5 and I need to be around! I just can’t see myself living a long life if I have this sob etc how long can you live with this??? I feel I’ve let them down.

Anyway, thanks for listening and I hope to get to know you all more. Sending hugs and strength to all xx

[sassy59]

Hello Sobcurious and welcome to you. It’s not great to not have a diagnosis but I’m sure that will change.

Please don’t worry about how long you might live as you can and will have a good long life. You’re already exercising as much as you feel able to so just keep taking good care of yourself.

Very nice to meet you. Xxxx

[Sob_in_oz in reply to sassy59]

Thank you Sassy59. Lovely to meet you. I appreciate your reply x

[Hidden]

Hi Sobxurious and welcome. Having carefully read your post I just have a couple of ideas. As regards the changes and progression of your lung condition I would be more interested in the fact that you are a lifelong asthma rather than the fact that you smoked. Lifelong asthma can often lead to the development of bronchiectasis. This is so often mis diagnosed as copd or not diagnosed at all, especially if it is on the mild end of the spectrum.

Most GPs and general respiratory consultants are not trained in bronchiectasis and have very little experience of it. Only a bronchiectasis specialist can properly diagnose it and formulate a plan for ongoing management and treatment. It is a complex condition and we are all different.

You say that you have seen many different respiratory consultants, who have all failed to give you a proper diagnosis despite your having all of the tests going. Do check to see if any of these were actually specialists in bronch ( not just claiming an ‘interest’). If not, fond one and insist on a referral.

There are, of course, many lung conditions which could be troubling you but givennyour history I would suggest that bronchiectasis is a good place to look.

[Sob_in_oz in reply to Hidden]

Hi Missyscarlet,

I appreciate your reply. The specialist I’ve been to see is apparently one of the best, I’m not sure if he is a Bronc specialist, I will look into that. Thank you. I’ll invedtigatevthis more see what I can find.

Thank you

[Darceydoo]

Hi there have you had a CT scan for a diagnosis? I have COPD I am a long Asthma sufferer as it was not properly controlled it’s now COPD because of it.Consult said 30 yrs stopped smoking that’s not the cause it’s the un controlled Asthma..

[Sob_in_oz in reply to Darceydoo]

Hi Darceydoo,

Thanks for your reply. This could also be the case. For a long time I would just use my ventolin and not be consistent with my preventitive. To answer your question, yes, I have had a ct scan (whilst 37weeks pregnant) At the time I had an infection and showed infiltrates in the left lower lobe which after strong antibiotics ‘largely resolved’

Thanks for your reply! I’ll ask my dr about this also. I’m basically my own dr at the moment!

Cheers and take care!

[PW_R]

Hey there, I am so similar to you. How are you doing now?