Back in December I gained 20lbs in 15 days. By January I was 24/7 on oxygen. End of February, they found my PFO. In March, I had the ASD out into close my PFO. During surgery, the found I have
vasospasm endothelial dysfunction (main artery spasms).
Waking of from surgery, I felt good, could breath, wanted exercise, and even got off the oxygen. The edema went down a little but never got back to pre swelling size. My Gastroparlysis even improved to where I could eat some cooked veggies and processed fruits again. I had only vomited a hand full of times since surgery instead of every 4 days.
Throughout the summer, I had a few days the spasms were very bad and oxygen dropped but I was able to breath through the pain till it past.
Every month the DIA part of blood pressure started to climb. In September my Blood pressure reading were 130/118 with pulse of 120. The edema cam back and I have put on 8 more additional pounds above my high of My fluctuations during the day. Instead of a 14 lb change in a day… I am down to 3 lbs. I am now on 2 water pills twice a day and blood pressure meds. It has brought my blood pressure down to normal range again but edema is still gaining. Additionally, I started to need the oxygen daily and as of yesterday, the Pulmonologist put me back on oxygen 24/7.
My Gastroparlysis is acting up and I barely eat soup once a day. My hair is falling out in clumps and the Pulmonologist said I lost 1/3 outer hair in my eyebrows. He pressed on my leg and said the flow back us delayed. My toes are light gray again. The Pulmonologist is back to thinking there is Pulmonary hypertension in 3rd chamber… I told him cardiologist said they ruled out Pulmonary hypertension when they closed the PFO.
The cardiologist says it is not my heart, Pulmonologist thinks it is. I feel like I am back in December and January before I had the extreme crash with TIAs causing temporarily paralysis in face and left side.
I never want to go through that feeling again.
What do I do?