Kathy's Posts

Since my last post by the end of Sept after the Metoprolol ER had been increased to 50mg bid some things became clear. The dynamic (super pounding) heart had improved to where I only felt it with exertion yet I still had significant exercise intolerance and shortness of breath all the time. My heart rate was usually in the 50’s at rest with BP 90’s/50’s yet the loud murmur hadn’t changed and I had noticed I could see my R Carotid pulsating (so weird). There were so many things I was noticing that I started thinking maybe it was an overworked imagination from anxiety. I was definitely depressed from the life interference and unknown so PCP started a low dose anti-depressant. Saw my Cardiologist 10/1 she recommended a 2nd opinion or surgery etc at Brigham and Women’s Hospital. She ordered a right and left cardiac cath and angio to rule out blocked coronary arteries and measure pressures and thought it would be done within a couple of weeks as she preferred one of two partners to do it. 10/5 it was booked with one of the MDs she had mentioned to me for the 12th, amazingly quick! Then the next day the scheduler called back saying my cardiologist preferred the 2nd md and the next date for him was the 20th. I was disappointed but it was only 1 week more. 10/7 I had an in-depth conversation with my cardiologist stating that after she reviewed my echoes with the md doing the cath thought the problem most likely is Prosthesis Patient Mismatch but because I had Pericarditis he recommended a breathing Echo to rule out Constrictive Pericardium. She still advised an out of state center and my insurance covered NYC not MA so she had a cardiologist.name. Because I had researched on this site I had decided if possible I wanted to see David H Adams MD as a surgeon. She had the same name. Her plan was for me to reach out which I actually had already done to see if they needed a referral and how to proceed. Since I knew they would need the cath results I was going to wait until it was done. Echo scheduled for the 19th. On the 12th I received a call to tell me the procedure had to be rebooked because the dr had to take an exam and was changed to 11/3!!! Of course this poor person had nothing to do with this but I was shocked and politely expressed my dismay and concern about it re; now severe pulmonary hypertension and Covid ramping back up. Then was told the dr knew my case and had discussed it previously with my cardiologist and he said I could wait!!!! Easy for him to say he’s not the one impacted by this and I have been waiting since at least May getting more and more symptomatic not knowing if this could cause permanent pulmonary damage. I was beyond discouraged and disheartened by the consistent scheduling issues with this practice. If I didn’t have such a competent cardiologist who has treated me for over 20 yrs and always honest and transparent I would have left before now. Then I decided enough is enough I called Dr. Adams’ office to see if I might be able to get an appt there having them take over. Kim was great! After they received info they would see what came next. My recent Echoe results were faxed and the next am Kim called and said the surgical APRN said that I needed a surgical consult. The soonest appt is 11/11 so to do the Echo and Cath and get cd and reports to them asap in time for then. So it seems now I have hope to get this sorted out and taken care of in extremely competent hands. I’m so grateful for this support site! Yesterday the breathing Echo was done and did not show any constriction of the pericardium which was a relief and she is still believing it is Prosthesis Patient Mismatch. I am showing signs of CHF and have started Lasix. I just hope when sorted out there is no permanent damage. Thanks everyone for your help and support. Please stay safe and well!