Tim's Journal

I have some horrible news. Our daughter who had Stage 3 Complete heart block died suddenly of Cardiac Arrest on July 17. I tell you this because since I have a BAV with a rising Aortic Aneurysm. I know this will not cause pain in itself, but the night she died along with several other nights have been the most stressful I have ever had in my life. I see my regular cardiologist on 9/11 and he has a Ultrasound scheduled. I am wondering if that amount of stress would cause it to grow. Back to my daughter, she was only 20, she was born with the condition and has had a pacemaker her entire life.

My wife and I went to my surgeon in Winchester back in November. He looked over the MRI and saw no real change. He prefers CT scans he like the modality to stay the same. We talked about why I went down to Duke for a second opinion. I told him that when his nurse met us in his place she made my wife and I feel like surgery was going to happen sooner than later. He apologized for the misunderstanding and was sorry she made us feel that way. He then asked did I want to stay with him or go with Dr. Hughes at Duke who I received the second opinion from. I told him I would stay with him. The hospital here in Winchester VA is having a new Cardiac area built that includes a work out area for recovery and many other items. My aneurysm was 4.7 in the MRI but with a Bicuspid Valve the surgery size is usually 5. My next CAT scan is in May. Have any of you tried Superbeets. I just ordered a 90day supply to try it. I hope all of you enjoy a wonderful Christmas.

Update.... I spoke to my home surgeon about getting an MRI the next time. I just had a CT at the end of May and he wanted another in November. The surgeon at Duke (Dr. Hughes) thought I might be better off getting an MRI instead of another CT. Back to the call. My local surgeon still thought I would be better off with another CT so that the modalities would be read the same way. I expressed my concern about getting a CT every 6 months and the radiation. He said he understood and would prefer the CT and that it could wait until May. I then countered with why not get the MRI in November and then if it shows something we get the CT in May this way we would have each view to compare. He agreed to that. I explained to him that his NP made me feel in May like surgery was going to be happening this year. He said no and apologized for her misleading my wife and I. He then said the radiologist which is an expert with valves was concerned and he is the one that mainly wanted another CT in 6 months since I did see growth in some areas. Well, I see my cardiologist tomorrow to discuss all the surgeon stuff. I remember what my daughters cardiologist told us 19 years ago with her, a cardiologist medicates, a surgeon cuts.

Yesterday on Thursday August 2nd. I'm at with dr. Hughes of Duke, he is the director of thoracic surgery there. I'm letting him serve as my second opinion. I met with his nurse practitioner first Melissa she's wonderful very knowledgeable loved talking to her. She was able to answer all of my questions that I have for the doctor. After that the doctor came in and I met with him whenever a few of the questions that she said he should answer he was able to answer those perfectly. Then I asked him about the lifting restriction that my hometown thoracic surgeon at put on me and the ability to ride roller coasters. He said I could lift just don't do any maxing out or anything like that in other words if you have to hold your breath to pick it up don't and he said I could ride roller coasters is no scientific evidence saying I cannot. When he measured my aneurysm he measured it at 4. 7.. he also said that my aneurysm may not be the reason I get surgery sooner he was more concerned about the leakage around my valve he said that would pull me into surgery sooner but they would fix both when they go into my chest. He also said the surgery would more than likely be within the next five years not anything within the next year unless the leakage increases. I told him about this website he's interested in it looking into it. And a few hours after I'm fully awake I will drive 5 hours back home. So in my honest opinion a second look an issue like this as well worth it. I had my doubts prior but I do not know and I am glad I got the second opinion. He is also going to send his report to all three of my hometown doctors my primary care my cardiologist and my thoracic surgeon. One more thing dr. Hughes does not like giving CT scans every 6 months he likes to do an MRI once a year this way he can see both what the echo shows and the CT shows but all in one image or video so when I get home I will be asking my thoracic surgeon to have an MRI done instead of another CT scan.

Today I saw my regular doctor who explained all my numbers in detail. She has been my primary care for the past 12 years or so. She's also the one that heard the murmur. She explained that after my blood test I just had how my heart efficiency has decreased. Also my flow is 45 with the 4.6 aneurysm and that is why the surgeon said I should not lift more than 30 lb or do anything that requires holding my breath to pick up also why I should not ride a rollercoaster my flow is increased too much. I asked her does she think I should get surgery now and she said yes I should get it sooner rather than waiting.

Well I have an appt at Duke with Dr Hughes on Aug 2 for my second opinion. another update, as I love roller coasters I am not allowed per my current surgeon, I decided to ask him via email this morning. I want this surgery so I can ride them again.

I just read the book that Adam wrote. It was the seventh edition. I found it a good quick read. I do recommend it for both the person with the valve issue and their spouse and or family. I find his story much like most of what all of us are going through and the thoughts we all must have when we found out that we have a heart issue. His family and loved ones respond in much of the same way as most of ours do. I like how he has some personal stories from us in there along side of his story. Thank you Adam and God bless. In your words..... Keep Ticking....

When should I consider surgery? I have BAV with an ascending Aortic of 4.6. One year ago it was 4.5. My surgeon has told me not to lift over 30 pounds and to make sure I breathe when I do lift that amount. Is it too early for me? I am in the process of scheduling a second opinion with a surgeon many miles away.