Had TEE yesterday and findings were mitral valve prolapse with min-mod regurgitation. Had issues this time with the TEE with heart rate going from 80 to 160 in less than a minute and blood pressure crashed. After recovery from procedure they did some more tests and they think I have dysautonomia that is the actual cause of my symptoms (tachycardia, low blood pressure, chest pain, fainting). I am glad that I am not having heart surgery - but still a little ticked off by how this was all handled. We were finally told yesterday that none of my tests had been reviewed until the morning we arrived, and that the TEE that I had done at home did not show a flail.....So we could have been told this over the phone prior to making this trip.....They are sorry.
Today was my first day of presurgical tests at Cleveland Clinic and it has been very frustrating and bewildering; and I honestly do not know what to think. Back home I was diagnosed by 2 cardiologists and a cardiac surgeon as having mitral valve flail with severe regurgitation that requires surgery. The surgeon back home said it couldnt be repaired and he wanted to replace with mechanical valve. Sent everything to Cleveland Clinic for 2nd opinion and 3 weeks later they called me, said they had reviewed everything, had same findings as local doctors, said they could repair instead of replace, and scheduled surgery. When I meet with cardiologist today he says he doesnt know who at Cleveland Clinic reviewed my tests but he doesnt agree with the findings. He says I only have moderate regurgitation, no flail, and mitral prolapse. He said he did not feel the risk of surgery outweighed benefits and will not give clearance for surgery. So after spending thousands of dollars and jumping thru hoops to get here this has happened. Sure I should be greatful that they are saying I dont need surgery.....but this is ridiculous after telling me the opposite over the phone to get me here. So my husband and I are at the hotel calling family and friends (many that were enroute to ohio) to tell them about change in plans. Then receive call from Cleveland Clinic that they discussed echo with another cardiologist and the surgeon; and they want me there in the morning for a TEE to " make sure we've made right decision before you head home". Don't know what to think, who to believe, who to trust at this point.......sorry post so long - just had to vent.
Surgery is less than a week away and I am starting to get very anxious, scared, and overwhelmed. The past week I have been so busy getting prepared that I haven't had time to think about it. Today I had my final presurgery task (dental clearance) before heading to Cleveland....and the anxiety is starting to take over. Will be so glad to get this surgery over with. Also very anxious because this will be the first time we have left my daughter for an extended period of time. She is 20 years old - but she has cystic fibrosis and needs a double lung transplant. Other family will be here for her - but its especially difficult going into this surgery and worried about her too.
Cleveland Clinic called and my surgery is scheduled for February 10th. Joseph Sabik is my surgeon and he is 98% certain he can repair the valve and will be doing the surgery thru a right thoracotomy. Now my nerves are really kicking into overdrive. I knew I needed surgery but didnt think they would get me in so soon. I want to get it over with and feel better but the reality of everything hit me today when I got the call......
Have gathered all records and they will be in the mail to Cleveland Clinic day after tomorrow. So glad we decided to get a second opinion and will have surgery at CCH. My ejection fraction is down to 50% (65% in September) and now severe regurgitation (mod-severe 12/12) per results of cardiac cath. Still having problems with my blood pressure being too low to take my medication (metoprolol) so my tachycardia has been keeping me up at night. Hopeful that I will get this surgery over soon and that 2014 will be a healthier year. Happy New Years Everyone !!!
My cardiac catheterization was done yesterday and we were told that my heart looks " outstanding other than your bad valve". Surgeon wanted to schedule surgery for January 2nd but we are getting a surgical review from Cleveland Clinic - so it will be put off until that is done. As of right now there is no damage to my heart - but dealing with symptoms related to hypotension ( 70/50 avg) so I still have to limit all activity.
Thank you to everyone that has sent me words of encouragement. I was up all night and we have decided to get another opinion. But, I have a question to those of you that traveled to have your surgery done.....how did you manage the travel, car or plane, so soon after surgery?? Were you able to do this comfortably (manage the pain)?? We are 8 hours from Cleveland Clinic and just the thought of riding in a car after heart surgery does not sound very comfortable.
Had appointment with surgeon today and it was disappointing news. First of all he feels I am not a candidate for minimally invasive surgery because of my size. I am a small, thin person (106 pounds) and he said the outcomes are not good in someone my size and it is not safe. Secondly, he does not believe he can repair my valve because it is the anterior leaflet that is damaged. Third, because I am 45 he feels the mechanical valve is the best choice or I will be going through this surgery again in 7 - 10 years. He also told me that I am "technically" moderate to severe regurgitation (ERO 38) and not severe (which would be ERO 40) so I could get echo in 3 months to see if severe at that time before getting surgery since my TEE does not show any heart damage. He said " its your decision" but he does want me to have a cardiac cath next week in preparation for surgery. I am so confused with cardiologist saying I need surgery now and surgeon saying I can hold off if I want. I am symptomatic (short of breath, feet swelling, nausea, tachycardia) ....but do I wait until I hit a magic number. There's not a chance things will get better, they will only get worse. Do I continue to deal with these symptoms and take a chance at developing afib or just get the inevitable done ???
Today is day 5 of bad days of being very short of breath with nausea. Its such a roller coaster where I am feeling great for days then feel like I have been hit by a truck. I have appointment with my surgeon in 2 days and just want to get this over with. I am having more bad days than good and have been told nothing can be done except limiting all activity, and surgery. I am on Metoprolol for the tachycardia but its not helping as well as when first started and cant be increased because my blood pressure runs low. Just sick and tired of being sick and tired as I am sure many of you can relate.
Its great to read everyone's journals, get an idea of what to expect, and know I am not alone. While some people state who their surgeon was/is and what hospital they were at, it would be nice to have this information on everyone. I will be having surgery in Louisville, Kentucky (Rudd Heart & Lung Center). I see a couple surgeons on surgeon finder for Kentucky - but there are no hospitals listed.