Still can't exhale

I have just about taking every test under the sun in dealing with my inability to exhale/breathe the CT scans and X-rays, PFT's, Spirometry test etc... show normal lungs no asthma, COPD, bronchitis, emphysema etc... my GP and gastrointestinal Doctors seem to think it's a side effect of my hep C Cirrhosis . The pulmonary doctor said my liver / spleen are swollen & I can only exhale at approximately 70% which is Moderate but I will bet that number has dropped as now I am light headed and dizzy. The constant wheezing / coughing can be heard without a stethoscope. I am going to see yet another pulmonary specialis soon. However I was curious if anyone has experienced this wonderful problem or have any knowledge of probable causes or anything. Nothing has worked inhalers, nebulizer etc... I would love to figure this out and get back to breathing somewhere close to normal.

Dld 🤠

8 Replies

  • Could be heptopulmenary syndrome. The hyper dynamic circulation caused by earlier portal hypertension can cause blood vessels in the lungs to expand (along with everywhere else). This can cause coughing / shortness of breath.

    At least that's what I've read in my trying to work out why I have a cough/ shortness of breath.

    I think I saw one other person on here have a transplant 9 years ago for it.

    Ask about a pulse oximetry test for it. Might not be anything to do with this but I know its one thing that can happen.

  • Thank you I will mention this

  • Hi yes im having all the same resst. My chest x ray is same. Although ive always had a bit of hayfever and irritable tubes. Just waitinf for my spiro test and take it frome their. Let me know how you get on x

  • Sounds like heptopulmenary syndrome, also can look into portopulmenary hypertension. Did you have a angiogram done on your lungs? Angiogram would be much more conducive in this situation, since it's more than likely an issue with the blood flow and not the atomic make up of your lungs.

  • My partner has pulmonary hypertension caused by portal hypertension. This was found during transplant assessment. Apparently it is rare and often overlooked it is high pressure in the lungs leading to right heart failure. It is diagnosed with a right heart catheter test to measure pressures.

  • That sounds like a fun test , my Dr's & I know I have something my wheezing is all day long sitting or lying down whatever. It's hard to sleep because I wake myself up wheezing . Is there help then ? Do they correct it or is it after transplant it's gets better?

  • I was very similar for approx 18mths. Had respiratory investigations everyone under the sun no exaggerations. Outcome - all normal!!!!! My respiratory consultant referred me on to Physio for Pulmonary Rehabilitation. After 2-3 sessions relearning how to breathe normally. Various techniques to reduce stress etc I am now attending gym at my hospital twice a week where I am doing exceptionally well. Good workout walking and coping strategies for managing normal inhale/exhale. It is worth asking for a referral to Respiratory physiotherapist for Pulmonary Rehabilitation. Good luck

  • My friend ended up with a oxygen tank as he was short of breath due to enlarged liver and spleen.It helped him a lot . Cathy

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