Sticky Blood-Hughes Syndrome Support
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shortness of breath

Hi all, I have had shortness of breath for the last 4 years. Originally investigated for clots,all negative, then foubd to have right ventricular outflow tachycardia. Had 2 ablations at St Thomas's unsuccessful, puit on max medication and warfarin 8mg daily.

Shortness of breath continued, saw respiratory consultant again, lung function test negative, had lots of antibiotics vareous times and doses. Still short of breath, swinging pyrexia, lethergy, chest infection every 6 weeks.

This time around got Chest infection, worked with it for a week and then had to sucome and go off sick, 5 weeks later, antibotics, steroids, inhaler later, still the same as 5 weeks ago, although t5he cough is a lot less.

Anyone any idea's?

Respiratory Consultant has me on 3 times a week antibiotics for 3 months, is thinking of repeasting lung function.

I feel so run down and useless, don't like giving in to this....

Rant over , thanks


5 Replies

Just a thought, but sometimes something missed. My children a few years back had the most awful chest conditions, which nobody could quite put a finger on, caused chest pain, and shortness of breath.. and eventually the paediatrician we were referred to in place of old one, spotted that they had Mycoplasma Pneumonia, which can be insidious and creep up on you, and can often be around for people with immune function problems:

It took six months of going to the GP surgery to get to the bottom of this!!

I am not saying it is this, but it could be in the mix and worth looking in to:

My daughter although not at asthmatic, had to have two types of inhaler for quite some time as her lung function was poor, she took up the Saxophone under my care in the end.. and this helped her out of that phase and she came out with better lung function than average!

Mary F x



I also had Mycoplasma Pneumonia as a complication of Glandular Fever, when I was 27.

Oxytetracycline, in hospital, sorted that out.

Good luck and best wishes.

Dave x


Me too. It's aften called "walking pneumonia" because it has a vey slow onset. Each day I felt just a little more tired and attributed it to job stress and autumn allergies.

It also takes a long time to recover completely. I had my last pneumonia coughing fit in a calculus class a good 15 months after I had been declared well

Story alert!: it was embaressing. I had no Kleenex and my coughing was seriously interrupting class. The coughing spasms were so compelling I couldn't even stand to leave the classroom. Just as the horrid junk was making it to my mouth,( remember, no tissue,) the professor -- still lecturing -- walked up to me and held a wad of tissue to my mouth just in the nick of time. He wadded up that tissue, handed me more with a flourish, interrupted his talk to ask of me " mycoplasma pneumonia? Diagnosed about a year ago? Right?" he asked. Still breathless I just nodded my head and whispered " Yeah. A year ago."


Do you ever cough up blood? If so, the APS could be attacking your lungs. This happened to me. Doctor performed a bronchoscope to confirm diagnosis. Also what is your oxygen level? Good luck


Thanks everybody for your ideas.

I did ask if maybe aps related, no answers forthcoming.

oxygen levels normal, just not moving air in the lungs. fine when do nothing, but with 2 boys under 12 not much chance of that, plus want to get back to work as a stroke nurse, which means lots of moving etc. getting fatigued quickly and short og breath plus sweating, but no temperature, coughing still but not much although productive.

just fed up..


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