On February 19, 2010...
Hi Steve
Just wanted to say hi and hope you are hanging in there okay. I hope you are learning lots from the journals and getting some ideas and questions together for your surgeon once you decide. I hated the idea of having to make any choices at all and thank goodness a repair was done and the choices didn't have to be used. It's such a huge responsibility. From reading what some have been reporting about the future of Warfarin, it puts that into a whole new light.

Take care.
Cheryl, Ontario
On February 16, 2010...
Hey Steve,
Thanks for the kind words you left on my guestbook. I re-read your journal entry and I think you feel exactly as I do. I have a feeling that the psychological impact is as big as the physical one. I don't know about you, but I know I sleep a lot less soundly when it's been a while after tests. I feel so much better just scheduling my echo. It's like my "symptoms" are disappearing. I'm still going to go through with the echo as the peace of mind is just the best thing in the world. I'll be following your updates.
Patrick in STL
On February 15, 2010...
Hi Steve

I looked up the Mazankowski Heart Institute and can see why you would be looking at that hospital for your surgery. I'd drive 3 1/2 hrs for that kind of care too. Now you just have to find the doctor. When I went to St. Mike's here in Toronto I was pointed to Dr. Latter who specializes in mitral valves. I liked him when I met him and didn't look any further. He made me feel very comfortable plus I had received a very good recommendation from a doctor we know so that helped greatly.

What tests are you waiting for - TEE and angiogram? From my angiogram and TEE at the end of July, I was scheduled for late September for surgery. It ended up being Oct 1 because I got sick but once your tests are done, I imagine you'll get a date and then know where you're headed.

Cheryl, Ontario
On February 14, 2010...
Hi Steve
Thank you for posting in my guestbook. I wish you and your wife a Happy Valentine's Day. I found it had a special meaning to me this year in more ways than one.

Gee, that's quite a drive you have ahead of you to get to your surgery. You'll definitely have to make some good plans for your return trip when the time comes. There are so many things to think of. Don't forget you can claim travel expenses for income tax purposes.

Dr. Gillinov said the Ross method has fallen out of favour with some as there is something else that has replaced it. You might want to double check on that. Obviously you have been doing some research on what you want done and if you need the information before Dr. Gillinov's transcript comes out, you might want to correspond with Adam and see what he has to say. In the end though, you'll have to see what your surgeon thinks because you'll want him to be VERY comfortable doing whatever it is that gets decided upon.

When my surgeon asked me what valve I wanted should a repair not work out, I threw the question back to him for his suggestion so I could see what he was suggesting and then I weighed it from there.

Do you have much snow out there? Southern Ontario has just been awarded one of the best winters yet as far as I'm concerned. We had a little dropping of snow last evening and it was all gone this morning. Love it. Love it. Our snowblower is sitting in the garage all filled and ready to go and hasn't been used once this year. Six more weeks to go and then spring. We warmed up a bit today - 0C or 32F. I used to ski but haven't for a few years.

Keep in touch.
Cheryl, Ontario
On February 13, 2010...
I also recently found out I have bicuspid aorta valve stenosis. My valve opening is currently at 1.2cm and my gradient peak is at 26mmHg. I know that I will not need surgery now but will in the future. I do have extreme dizziness. What is your valve opening and peak gradient at this time? I am also athletic but have seen a change in my energy level. I wish you lots of luck with your upcoming surgery.
On February 13, 2010...
Hi Steven,
You have gone mighty quiet on your journal so take it no results yet? Thanks for your tip - for keeping warm here, I have hooked out my old thick wooley ponchos (they came back as a fashion statement in Scotland about 5 years ago) and a huge tartan plaid that I only usually wear on Burns Night. Our central heating system is great and we have a big wood burner in the lounge - I plan to position my recliner just along the side. My cardiologist has said that he would expect me to return to full fitness. I have set my goal for Valentines next year that I will be able to hill climb for 4 hours without getting breathless and do 20 full body press ups. That for me would be a return to full fitness as I was pre Oct 09. It will give me something to focus on and a 6 month training programme to plan for. Our business is health and fitness so I have no excuse! Stay in touch, warmest wishes from Penny (Scotland)
On February 11, 2010...
Steven, thanks for posting to my guestbook. We are the same age; I turn 51 next month. And, though, I have been highly active, I didn't hold a candle to your 70-mile weeks. I maybe ran 20+ miles a week. I miss it. Maybe one day I'll be back on track. I really love to take big hikes in the mountains; hoping that will be restored. Sounds like you don't have a surgery scheduled yet. I have signed up for your updates. Keep in touch, and I pray you will have a good outcome.

Duane Hunt, Florida
On February 9, 2010...
Hi Steve
Not to worry about missing the chat. Adam is going to have the transcript posted as soon as it is available which should be a couple of weeks. I think you'll find it really interesting and hopefully help you make your decision. Dr. Gillinov talks about the proposed ease of a resurgery and my one big question would be if our doctors here know how to do the same procedures with such ease. We are a smaller population so naturally our doctors can't be expected to do as many surgeries. I doubt very much you can go outside your province for medical care so you have to find the best one there. If he doesn't think a reoperation is easy, then you are looking at a mechanical valve. This is a tough decision to have to make.

I was asked to try a new annuloplasty ring that was in trials in Canada. 200 Canada-wide had to be implanted before it would be available for general use in Canada. Three hospitals were in the study - one in Halifax, my hospital in Toronto and one out west. The study had only 2 months left of its two year run so when I asked how many were implanted in Canada, only 40 in total. I asked how many had my hospital put in - NONE. My decision was made. The States had implanted 650 already and the ring was being used there. I just was too chicken to be the first for my surgeon/hospital. Makes you think.

When do you think you are headed for surgery? How much time do you have in which to get your facts? If I can help with any research, I'll do what I can. Just let me know. Cheryl, Ontario

On February 9, 2010...
Hi Steve
Did you manage to sit in on the chat with Dr. Gillinov? I came away totally rethinking the tissue value situation and ended up being more for it than I was previously. I was lucky in that the doctor managed to repair mine. I still have a wee leak, but nothing near what it was. I'm disappointed I'm not totally fixed but I suppose the doctors think I only have so many more years to live so this will probably do me. My surgeon recommended a mechanical valve because of my age, saying he didn't want to see me have a resurgery because of a tissue value. But, after listening to Dr. Gillinov, I would reconsider.

Do you have a good lot of surgeon's to shop from in Alberta without getting another's nose out of joint? If you do, I would research my doctors and see what they have to say. Dr. Gillinov even said he wouldn't hesitate at putting a tissue valve in children because of their active lifestyle.

Getting tested for the INR isn't that big a deal, but it's time out of your day. There is a machine much like a diabetic's machine that can measure your INR. If I was going to be on Warfarin for much longer, I wouldn't hesitate at buying one. They can't be that expensive. You still need to let the doctor know the readings and every now and then show up at the clinic for a proper blood test though.

Cheryl, Ontario

On February 8, 2010...
Hi Steve
Been there. Done that and more than once. I went first class though - by ambulances. I even got plucked off one of the major highways in Ontario. I'm surprised I'm still married. My husband is just the best. Once, when the attendants came to the house they ended up being associates of my husband and no way where they checking my heart! I could have died of embarassment. It was after that last episode I started seeing a cardiologist on a regular basis - finally! Maybe Adam should have a "most embarassing moment" section. Heart palpitations do funny things and once you start getting the pains to boot, what do you do? It takes getting a diagnosis to begin to live with this while you are waiting to get worse. It's good you an laugh at yourself. You are among friends here. Good luck with your tests. Cheryl, Ontario
On February 6, 2010...
Hey Steven! I can so relate to your experiences. Luckily, I do have a good cardiologist; it's his nurse that I have an issue with. She & I have had a "come to Jesus" talk & she now knows that when I call, she'd better acknowledge me ASAP.
Only you can know what you are feeling, and if something's not right, you have every right to find out why. Keep looking & find a doctor that will listen to you and help you. I had to do that with my psychiatrist and am still looking for a good one.
You are not an idiot! You are just aware of your body, and that awareness will serve you well.
I'll follow your updates as we musicians should stick together!
Kathy
On February 6, 2010...
Hi Steven,
You are not an idiot and you have no reason to feel apologetic! You know your body and when somthing if off kilter. It's like your car engine, you wouldn't accept a mechanic saying that all was ok when you instinctively feel a shudder or misfire or loss of power. Get a 2nd opinion from a recommended cardiologist to find the cause of your symptoms - I started to feel neurotic when both my GP and my cardiologist kept telling me that my lungs were clear of fluid and that there was no reason for breathlessness. It was only after I admitted myself as an emergency that a chest x-ray confirmed significant fluid build in the lungs and legs and that I was in congestive heart failure. My (ex) cardiologist still didn't see the need for any further tests but upped my medication and wanted to see me again in 4 months. That's when I found this website and Adams book and the confirmation that I needed to seek out the best that the UK could offer. You deserve the best quality of life - fight for it!
Warmest wishes Penny