COPD (never smoked)

[Brenda2849]

COPD (never smoked), left paralyzed diaphragm, CTEPH, DVT, 3 blood clots in lungs, Factor V Leiden, hypoxia, afib
None of my doctors are giving a clear understanding, prognosis, or what to expect

[Sara_MHModerator]

Hi Brenda.  I wanted to check in and see how you are doing?  

[Brenda2849]

I have ongoing shortness of breath, I also have a left paralyzed diaphragm of unknown origin, CTEPH from PE and sleep apnea. I was unable to tolerate a CPAP machine because of the paralyzed diaphragm.  I have been having some new symptoms over the past few weeks, at night when I inhale, the inside of my body shakes, not the outside, it’s waking me up at night, and uncomfortable, I also seem to be using my abdomen muscles more to breathe when I’m lying down?  I have a constant cough and chest tightness, yet the doctor says my lungs sound clear, I recently had a CT scan that stated “mosaic attenuation: and “heterogenous lungs”.  I live in an area with adequate medical options, but it seems no one can tie everything together and also the A-fib

[Sara_MHModerator]

Hi Brenda, sorry that I missed your follow up. Your result was a non descript finding.  Have you had any follow up to that?  

[Sara_MHModerator]

Hello and welcome to MedHelp's forums.  We're really sorry to hear of your diagnosis and that's unfortunate for anyone, but especially a non smoker.  There are other causes of COPD including air pollution and that type of thing and up to 30 percent of those with COPD never smoked.  When dealing with what will now be a chronic illness, it is really important to have a doctor you trust and have rapport with.  If you write out your questions prior to an office visit and take someone along to take notes during the visit, this can be helpful.  In the moment it can be hard to think clearly.  And doctors should provide you with any information you request.  Was this an emergency situation in which through determining what was going on with your breathing and discomfort, they ran tests to find these things or was it a slower process than that?  

Here is a fact page on living with COPD: https://www.webmd.com/lung/copd/10-faqs-about-living-with-copd#1.  There are medications/inhalers that make it much better for many.

Typically, blood clots in the lungs are very serious and considered a medical emergency.  A pulmonary embolism can be fatal.  Were you hospitalized for this? https://www.webmd.com/lung/what-is-a-pulmonary-embolism.  Are you now on blood thinners?  That's a usual course of action with pulmonary embolisms.  

You may have had the blood clots in your lungs due to Factor V Leiden which is a condition that results in blood clotting abnormally. This is an inherited disorder treated with blood thinners as well as they may recommend compression stockings and other things.  https://www.mayoclinic.org/diseases-conditions/factor-v-leiden/symptoms-causes/syc-20372423

Hypoxia means that oxygen was not adequately circulating through your body. This would be expected with all you had going on.  Obviously this is not a good thing but with treatment for the other issues you were having, this should get better.

DVT is deep vein thrombosis and involves blood clots in the leg.  Again, due tot he Factor V Leiden this would increase your risk for that. The compression stockings and blood thinners would help this aspect to your diagnosis if you and your doctor agree to this. Your pulmonary embolism actually could have started there. You may also want to avoid sitting for long periods by getting up and moving which helps with DVT.

CTEPH is chronic thromboembolic pulmonary hypertension.  Your doctor should be working with you closely with this diagnosis. It can develop from pulmonary embolisms or the blood clots in your lungs. Is surgery being recommended?  Unfortunately, what can happen is that with repeated blood clots in the lungs, scar tissue can develop narrowing arteries in that area. There are a couple other treatment options if they are not doing surgery.  https://my.clevelandclinic.org/health/diseases/17635-chronic-thromboembolic-pulmonary-hypertension-cteph

Here is information on atrial fibrillation. https://www.mayoclinic.org/diseases-conditions/atrial-fibrillation/symptoms-causes/syc-20350624.  This is another chronic condition to monitor and take action if necessary.  Treatment options vary from patient to patient.  https://www.mayoclinic.org/diseases-conditions/atrial-fibrillation/diagnosis-treatment/drc-20350630

As to prognosis, that is individual to patients and all that they have in their medical history.  Your medical history sounds to have gotten quite complicated. The genetic disorder of Factor V Leiden has created a bit of havoc in your body.  A good question to ask is if this is adequately managed, will other health issues be controlled.  And what damage has this abnormal clotting done that is now permanent.  Learning to live with a chronic issue is difficult but can be done.  It always helps to be your best self in terms of lifestyle.  Exercise if your doctor approves that, keep at a healthy weight, eat properly.  

Let us know what else we can answer for you.  You do deserve a good discussion with your doctors to understand fully what your next steps are and what you can do to improve or live with the diagnosis.  All the best to you.