Post pulmonary embolism problems
Hello! Three years ago, I had a massive saddle embolism and massive bilateral pulmonary embolism, infarcts, and seconday pneumonia after the PE episode. I also had three stranded clots in the heart. My heart was compromised, enlarged, and signs of pulmonary hypertension. I was treated with thrombolytics, and even after treatment, it took several weeks until clots began to clear. It took several months for the ct to show no evidence of new clots. I was told that I should not have survived and it was the worst case seen by several doctors of someone who survived. SInce my episode, I have remained on Xerlto as I am less active and am at high risk of another episode. I have not been tested for a clotting disorder, and no one in my family has been diagnosed. My episode was triggered by an extensive neck surgery. My question is if anyone has had such a clotting episode and if so, what has it been like afterwards? Ever since my PEs, I have had a horrible "smoker's cough", but I have never smoked in my life. It is non-productive and it is present on a daily basis. My voice is a bit raspy, especially when I laugh. At times I can't move air, and in October was hospitalized for 12 days. I got very hoarse and could not get sound out. I have had it happen ever since my clots, but it usually only last anywhere from a few hours to a couple of days. In October, it didn't improve after several days, and when I called the doctor's office, I was told to go to the ER. I had to do breathing treatments every 4 hours. I initially did 3 breathing treatments in a row in the ER and there was no change in airflow, so I was admitted. After 10 days of extensive treatments, I finally moved air much better. My breathing function test showed that I had small airway disease or small vessel disease. After discharge, I did a bronchial challenge test, which was negative for asthma. My pulmonologist has not been able to pinpoint what I have. There are times that my oxygen level drops, but most of the time I stay within normal limits. Today I had a 6 minute walk test, and I didn't go below 95. My doctors seem puzzled. I have also been diagnosed with HFPEF (heart failure with preserved ejection fraction). I developed this after the clots, but my doctor does not believe it is related. Has anyone developed heart failure after having a saddle embolism, PE, or clots in heart? We are trying to figure out what may be causing all of my medical issues that all started afer my surgery. Hopefully I can find someone who has had the same experience to help me understand better what is happening to me. Thank you for your time. Any suggestions of where I can get the best help or what would be best to do will be greatly appreciated.