Butch's Journal

Betty Atwater  Hi Butch, I hope you can patiently wait for Cleveland Clinic to contact you because it is definitely one of the very best places to go for heart surgery. After my medical records were sent to CC in early Sept. I finally heard from them about two weeks later. The surgeon I wanted (Dr. Gillinov) must be extremely busy because I'm waiting 3 months for my surgery (it is scheduled for Dec. 13). I feel it's worth the wait. But depending on the surgeon who will do your surgery, you may have a shorter time to wait.

Cathleen Weed  Keep calling them. Speak to the Nurse Practitioner if you can. They get things moving along. Don't just wait for them. Squeaky wheel and all is true. 💛

Jill Krajnovich  It took 2-3 weeks for me to hear from the Cleveland Clinic after sending my records for review so I would think you should be hearing from them soon.

Michael Meyer  Butch, it depends on the surgeon's availability and probably severity. You may require to specific surgeons since you need both aortic and mitral valve replacement. I had mitral valve repair in 2014.
Cleveland Clinic can handle it. I had about a two month wait and was open to a cancellation, sometimes people get sick and cannot have surgery.

Cathleen Weed  Hi Butch! I had your same surgery in 2005 at age 33 (aortic valve and aneurysm). Everything went smoothly. Many people on this site have experienced the same situation you are in and I'm sure they will reach out. My journey has been long and adventurous with my BAV (bicuspid aortic valve), starting at age 19, so I've kind of been through it all. I did recently have my bovine aortic valve changed out again in 2015 (age 44) with the new TAVR technique. Your doctor is right that you are lucky to have been aware of this for a long time and you are able to make informed decisions about surgery and avoid serious complications. I know it's hard, that's an understatement, to face open heart surgery. It really does take someone who has been through it to understand everything that is going on in your mind right now ( I call it the "silent suffering" ). But you know what? Life really truly does go on and there's a sense of accomplishment to it all when it's all said and done. Having to work so hard or go through something so challenging to stay alive sends a message to yourself and others that you are here on purpose. I have learned to let go and absolutely trust my surgeons because they are experts at this. I let them do their job and I do mine...which is to stay healthy and positive and to be a "good patient" by doing everything I'm supposed to do to get better and stay that way...and I'm great at my job lol...so I leave the hard stuff to them :). I would recommend that you do outpatient cardiac rehab after your surgery. It's a great way to build your fitness and confidence back up quickly. It's basically a private gym in a medical setting where you are monitored by nurses and physical therapists a few times a week
as you recover your strength. Your cardiologist can prescribe it for you. You'll meet great people there too who can relate to you. I hope you find lots of support on here. I joined a couple years ago and like to pop in and offer any advice/encouragement I can because I know how tough this is. Best wishes on your upcoming surgery and long, healthy life!!
Cathleen

  Welcome Butch! I recently had my aortic valve replaced. The anguish you have before the procedure is the worse. My family could just look at me sometimes and I would burst out in tears. But, I just kept reminding myself that surgeons and cardiologists do these procedures every day with great success. If you have any questions, this group will help you greatly. Many have been to Cleveland Clinic. Will keep you and your family in my prayers. You got this.

Butch Nisbet  Thanks for the encouragement. I keep telling myself that open heart surgery today is like taking your tonsils out was 30 years ago. Its hard to keep your mind in check when you think about it though.

Rose Madura  Welcome to the site Butch. The angst prior to surgery seemed worse than the surgery. You worry about everything. Remember that they do this every day and, while there are risks and complications, the doctors know what to do and how to treat it. Stay positive and we will help you through the process. Let us know if you have any questions.

Jill Krajnovich  HI Butch, At the end of July, I had my bicuspid aortic valve replaced (it was actually found to be unicuspid when they got in there) and an aortic aneurysm repaired by Dr Lars Svensson at the Cleveland Clinic. I did have a few episodes of a-fib following the surgery which approximately 30-40% of cardiac surgery patients will experience, but other than that am doing well and my a-fib has not returned since mid-September.The Cleveland Clinic is kind of like an assembly line for cardiac surgery. It is a very efficient process and I think they have seen about everything so you will be in very competent hands. If you have any questions about my experience, please feel free to ask. Best of luck to you!

Gerald Poulton  Hi Butch and welcome to the club 🤝 I am 13 weeks post opp tomorrow and doing great. OH.s with full sternotomy due to a bicuspid aortic artery and aortic valve annurism and doing great. Walking, jogging, hauling and stacking firewood and life is great. We all go through the same initial shock emotionally. Even though I also knew for years that the surgery was inevitable, when after a long stint of 6 months ECG's my cardiologist told me it was time to make an appointment with the surgeon, I was shocked. Soon the acceptance took over and I was anxious to rid my body of the diseased valve, graciously accept the gift from the 🐂 Get the annurism repaired and move on, recover and be healthy. For most as it was for me, the surgery and recovery is not even close to what you are fearing now. My pain was minimal, more discomfort than pain and after a couple of days on pain medication ex strength Tylenol did the trick. Once home, I only took tylenol for a couple of days and that was it. I was lucky and sleeping in my bed and on my side from the first night home. My discomfort probably only really lasted a week but my back hurt when sitting in the recliner for a couple more weeks and that was about it. I was walking for miles before my surgery and it didnt take long after surgery until I was walking miles again, you can read my journal if you wish and see my documented recovery and progress. Looking back, the fear was not warranted
And even though I experienced a few temporary complications from the surgery, it was not near as bad as recovering from a badly broken leg and surgery several years prior and the pain was nothing in comparison. You can and will get through this 👍and I will be here to welcome you to the recovery side. If I can help in any way just let me know.

John Mugan  Hi Butch
I know this is not a competition but I am 6 weeks post op for an aneurysm at 6.5cm of the acending and aortic arch.
It was all replaced by a dacron graft.
It's incredible what they can do now.
All the best. the waiting is definitely the hardest.

Shannon Gray  Hello! I had your same surgery almost 2 years ago at the CC. I experienced a difficult recovery, but wouldn’t trade the care I received for the world. I have since learned to just focus on each day and taking the best care of yourself... everyone experiences this surgery differently. My best to you!