Neal's Journal

Thomas Brusstar  My son was 13 when my severely leaking mitral valve was repaired.  He used to always rest his head on my chest watching tv, but I didn’t know he was listening.  After surgery he listened and said he missed the old heartbeat, it was more soothing!  Now it just sounded like an army marching.   For the record, I don’t miss the old heartbeat!

Susan Lynn  What an inspiring story! Glad you're feeling better and that fate brought you and that woman together. I'm sure she had a picture in her mind of what recovery would be and you just showed her that it is possible to be up and around in a short amount of time.
Hope you continue to improve and share your experience with others!

Todd Hanson  Great to hear Neal. I also had some extra fluid on my lungs one week after surgery. I was admitted overnight for some tests and monitoring and sent home with some adjusted meds and a 2 liter daily fluid restriction. Beyond that, every day gets better and better. Keep up the good work!

Marie Myers  That is a great story! I was on the receiving end of that type of comforting 6 years ago also. I was attending my 40th nursing school reunion, and I had just been given the daunting diagnosis of large ascending aneurysm and aortic root aneurysm. I found out that (of all people) my old roommate in nursing school had been through AVR 10 years earlier... I talked to her nonstop for about an hour, and felt so much better after hearing her story. Never underestimate how comforting you might be to a fellow human during a chance encounter!

Martin Smith  Regardless of worries and doubts you're feeling, protect your daughter from experiencing those feelings. Reassure her, downplay the risks. She doesn't need to perceive or understand the risk you face. Keeping will help you believe in your own positive outcomes. I wrote letters to my sons who are in their early 20's. These were only to be delivered in the event that I didn't survive. I survived!! and the letters live on, undelivered and unread, in the obscurity of a dresser drawer. Focus on the statistical probability that your surgery will be successful.

Martin Smith  Keeping it all positive and confident with her. For support share your feelings positive and negative with solid friends or family who are better positioned to help you.

Rose Madura  Well, you can assure her by telling her you chose the Cleveland Clinic because it is the best heart hospital in the world. Maybe use a visual with 100 pennies. Show her how many have positive outcomes. And even if you have complications, the doctors are trained to know what to do. Exude confidence and she'll feel more comfortable.

Randy Chapman  I have learned so much from this blog. It will be an entirely safe experience as so many have described. Look for me in the waiting room Wednesday, or if not, in the ICU or stepdown hallway. Hugs for your daughter.

Miriam Alejos  I have been as positive as I possibly can around my 7 year old son. It can be so hard but talking about the things we will do after my surgery and how he can help me around the house seems to help. He will occasionally ask how far away my surgery is and looks nervous but we just reassure him that things will be alright. 

Louise Moore  Not too long a wait for you now, Neil, and you'll be on the healing side. You can rest assured that your Doctor and place will see you through this and that's a good reason to be excited and feel positive. You speak for a lot of us, we're ready and ready to put this behind us. Onward and upward to better living with a better heart indeed!

Rose Madura  Hi Neal. I know that rescheduling can be frustrating but be thankful that you are not in an emergency situation. October is just around the corner. Please keep us posted.

Dan Baltazor  Hi Neal, I understand the frustration. To put things kind of in perspective for you, I was the guy on the other side of that coin. I was the reason why someone else's surgery was postponed and why someone else had surgery with a different surgeon other than the one they thought they were getting. My emergency situation took away from someone else, and because of that, I now have an understanding of these situations. Hang in there. It does seem painstakingly slow waiting, but when you get on the other side and look back, you kind of see how everything does line up for you. It's really hard, but patience is key. Take care.

Susan Lynn  Neal - I also had mitral regurgitation and I remember one surgeon telling me I could wait until "after the holidays" to have surgery. Our condition is pretty common and not a huge priority in the cardiology world, but I would request a telemedicine appointment with the doc - he might be able to squeeze in some time just to tell you if you need to be interviewing surgeons - or, you can always move forward and start the process knowing that if it's not immediate, it likely will be in the coming months or years. There are a ton of opinions regarding timing for repairing a mitral valve, but many surgeons opt for sooner rather than later to prevent overworking the heart and enlargement of the left ventricle. If you have a copy of your echo and TEE (if you've had this), you can start shopping around now. The first thing to learn in this process is that you have to be your own advocate - politely demand the attention and treatment you deserve. You'll be just fine.

Susan Lynn  Neal - There are definitely mixed emotions, but experienced surgeons repair, rather than replace, more than 90% of leaking mitral valves. Do your homework, find a high-volume mitral valve surgeon with a solid history of success, and you'll be confident on game day! Most of us will tell you, waiting is the worst part! You've got this! Best of luck to you!

dina hudson  I agree with Susan. Finding a high-volume surgeon that you trust is key to a good outcome. I was told to have mine repaired within 6 months (in June I was told this after my TEE) so I know exactly what you are going through. My surgery is (re-) scheduled for September 30th. One thing I can recommend from personal experience is if you like and trust the first surgeon you see, schedule with him/her a date. Then, continue to interview the others. This gave me some peace that I was moving forward. You can cancel with plenty of notice if you change your mind.