Constant shortness of breath and cough

[greyarea11]

I was diagnosed with bronchitis in November of 2018. After 3 rounds of steroids and antibiotics I finally got better. Once the new year came in I started getting sick again. My PCP thought it was bronchitis again, but I couldn't take anymore medications because I already had too many steroids and antibiotics. She referred me to a pulmonologist who diagnosed me with Asthma. Growing up I had childhood asthma due to being born 6 weeks early. So finding out that I had it again was a shock. I was put on singular and symbicort for 3 months. After I followed up with my pulmonologist he was concerned because the medications weren't working. I was still having chronic coughing, like a constant tickle in my throat, and shortness of breath. I can't exercise without feeling dizzy. Back in November my PCP was also worried because my BP as a 20 year old was borderline hypertension. I am on adderall and came off to see if it would improve, but nothing. Now I am just constantly coughing and having extremely high BP and HR. I have seen a cardiologist to see if this is a cardiopulmonary issue, but felt as if he didn't believe my symptoms with me being as young as I am. I had a chest x-ray, a CT scan with IV contrast, whole blood work panel done, and a PTT test that all came back normal. I am at the point where I don't know what to do and feel like no doctors believe my symptoms. I am a college student just wanting to finish my degree and exercise, but can't walk up the stairs or walk to class without being winded or disrupting lectures because I can't stop coughing. Please help. I have looked into various medical issues to try and figure out what this is. I am concerned that if I don't figure something out soon I will end up with serious repercussions. Any ideas or tips?

[Katinka46]

Hello Greyarea. Love the name. I have been in the grey area with my unusual/rare conditions. I gather from your terminology that you are in the States. PCP and Pulmonologist are a dead give-away. I really shouldn’t try and diagnose but I can see you are in a bit of a pickle. Your CT with trace should have picked up any pulmonary embolism (PEs ie blood clots) but they can be difficult to see. A normal CTPA scan does not rule them out. The best scan for PEs is a V/Q scan, that uses radio-active trace in the blood vessels and then in the airways and is good at showing if there are areas of non-perfusion indicating a possibility of PEs. Have any of your investigations been looking at PEs? And have any of your doctors mentioned them as a possibility? They can happen at any age. Has anyone on your family had PEs? There can be a genetic tendency for blood clotting.

I am probably going in quite the wrong direction but I so identify with the difficulty of knowing that you have something not right in your lungs. I just hope they get it sorted more quickly than my ‘Greyarea’.

All the best and let us know how things go.

Kate

[greyarea11 in reply to Katinka46]

I had a lung CT with IV contrast, but I'm not sure if that would show it or not? My aunt does have blood clots but thats about it in my family and my great grandparents dying from heart disease. My parents are both in great shape with no problems. My sister has an autoimmune disease that they don't know yet, so were both kinda in the grey area. None of my doctors have said anything to me about any possibilities, which is why I'm hesitant to even go back to them. I feel like they aren't taking my issue seriously, but when it comes to breathing I feel as if that is a very serious matter. Thank you for replying! you are the only one that has even put me in the right direction of something!

[Katinka46 in reply to greyarea11]

Well, if you look at my profile you will see why PEs were uppermost in my mind. It took four and a half years to diagnose my chronic thromboembolic disease (CTED) and eight to diagnose obliterative bronchiolitis. In my case the blood clots came after a hip replacement operation. But they can happen without a cause. I had a CT scan with trace (CTPA) and initially a radiologist said no evidence of CTED. A year later at a specialist unit in another hospital the radiologists found evidence of it on the same scan.

Do you know much about your aunt’s situation?

It’s a tricky one.

Let me know how it goes.

Good luck

Kate x

[illawarra]

Dear greyarea I am sorry that you are going through this. Just something to consider- has your doctor referred you to an Ear Nose and Throat specialist? I have lung disease but I also have Idiopathic subglottic stenosis. Which is narrowing of the the trachea. A person suffering with this coughs a lot and gets very out of breath doing many things even speaking. Many people get diagnosed with asthma for years before finally being diagnosed when their airway is very narrowed. I do hope you can get the right help soon. It is not fair being so young that you are having all these problems. Best wishes from Oz.

[greyarea11 in reply to illawarra]

I am actually getting surgery in May for a deviated septum! I have been back in forth with my ENT and he referred me to pulmonology. I will have to bring this up because this is not something I have thought about. Thank you!

[illawarra in reply to greyarea11]

It may not be your problem however, yes do bring it up. The narrowing is caused by scar tissue that grows across the airway.