Cathy's Journal

It’s been almost 3 months and I’m still healing and dealing with severe nerve pain down my chest and arm and stomach. I just started on a new medication and hoping it help. I can move my right arm better but the shoulder still won’t go up . I am walking about 40000 steps a day now and almost done with cardiac therapy ! Yay! This is definitely a journey much longer than I expected !

My mitral valve repair was Nov 5 and they took me back into surgery for a bleeding muscle or something early Nov 6. Surgery was min. invasive and main incision is below right collar bone. I spent 1 week in hospital. Surgeon went on vacation November 9 so I have not seen him since a few weeks before surgery that I know of. Just started cardiac rehab last week and going in for rehab to get use of right shoulder back in few days . I could only have Tylenol and tramadol for pain and it doesn’t work that well. Slow healing and a lot of nerve pain and center chest pain. I just started getting more than an hour or two of sleep a day last week and that has helped a lot. Hoping for some timeline and info this wed when I get to see surgeon this coming wed.

Can anyone prepare me on what I may need help with once I’m home from the hospital if the surgery goes as planned . The surgeon is going between my ribs on my right chest.

So final answer is I need mitral valve repair. The chords need replaced and angio ring put in. We have caught it early enough so that I will not have any perm. Heart damage . My new surgeon at st Vincent is a valve specialist and has reduced my death and complication percent by a lot .. less than 1%. Incision is on right side going between ribs . So thankful for that ! I’ve been diagnosed with ptsd due to previous medical procedures so the surgeon is trying to get a plan in place since I also have a vagal nerve response and pass out without warning . Dr just pit me on 2 anti anxiety meds that knock me out and the surgeons office wants me to have 2 months worth of medication to get me thru before during and recovery . Whew ! I’m absolutely terrified ! Harder not being able to see my family and loved ones . Not sure how to get thru this so prayers please and can use all the tips and advice I can get . Pre op is Nov 4 and still waiting on what all that entails and surgery is Nov5

Going to st Vincent in Indianapolis the Oct 13 and 14 with the TEE scheduled for early morning . Unless there is an emergency my second opinion surgeon is supposed to be available to go over the results afterward. Fingers crossed and wish me luck ! I may finally have some answers after almost a year of circles.

Met with Dr Heimansohn. It was a short visit but he thinks all my symptoms are from my mitral valve regurgitation. He “thinks” it may be time for surgical repair but he is scheduling a transesophageal echocardiogram first and then will go over everything with me. He also told me that the vagal nerve response with my heart stopping 4 hours after the heart cath could be from the mitral valve too. He is doing the test at St Vincent and I feel in much better more knowledgeable hands. Hoping if I need surgery he will take over my case rather than send me back to home hospital. I already feel better now that all my symptoms are from my heart instead of thinking I was just going insane. 2 doctors and 3 cardiologists and 1 surgeon have all told me all my “symptoms” were not my heart and no big deal. I have been so frustrated and upset since it’s all getting worse - from all over Edema, exhaustion, hard to catch my breath to chest pressure and pain and increased anxiety not to mention the heart stopping thing 🙀 Really praying I’m finally with the right surgeon !

David A. Heimansohn, MD Surgeon in Carmel, Indiana My cardiac surgeon sending me to Indy sept 30 for second opinion . Hoping to finally get some questions answered 🤪 Wish me luck and knowledge !

Finally feeling better ! Cardiologists and surgeon had consult a week ago and I’ll be going somewhere for second opinion and a secondary surgical consult back with Elkhart surgeon . Still waiting on more info from cardiologist on what first option is and the details since heart cath results were great but echo stress test showed I needed mitral valve surgery . Fingers crossed for good news please

Any one have tips on helping with sore ribs from chest compressions. The nurse said 3 days and it would be better and it is except the pain moved to sharp pain in left center of chest and I still can’t lay flat in bed without it really hurting. Tylenol really helps a lot. But it’s been a week and at this point not sure what else to try. Still no call back on test results and their plan after the dr group conference last wed. Figure I will give them till end of next week to go over all the tests.

Had my heart cath Friday . Was horrible experience until the doctor finally agreed to sedate me completely. My heart stopped when they tried to sit me up after the four hours down and the nurses did heart compressions to get me back. Guess my heart cath showed minor mitral valve regurgitation and doesn’t match the echo cardiogram or echo stress test either . I’m supposed to get a call after tomorrow from a staff member with what the cardiologist department decide after they have some group consult. No clue what in the world is going on and it’s beyond frustrating ! Very relieved to hear that Dr saw no issues at all!

I have a massive major medical phobia . It’s pretty bad and I’m trying to get answers or find dr who will work with me. I have a heart cath scheduled tomorrow and I’m beyond terrified . I just don’t know how to trust a medical team that keeps changing the story and what and how they are going to do something . Is this just normal with all surgery procedures and testing?