The Difficulty of Returning to the role of Heart Patient

[brucemacd]

I had my last OHS almost 25 years ago. The check-ups were pretty light over the years, and only about 4 years ago became annual. Apart from watching my INR it felt like real smooth sailing. However, in April at my GP I had High BP and High cholesterol detected for first time. And later, at the annual heart doc check-up, (usually a ten minute Hi and Bye) the echo showed ascending aortic dilation (4.5 cm). The CT scan done a couple weeks later was 4.9. In my mind I recall lots of talk of how well I was doing and that my valve would likely not need to be replaced (and is supposedly still doing fine). The likelihood of an aortic aneurysm was never broached, and I admit, I must have had my blinders on pretty secure because I see now that since at least 2009 the research has been showing this eventuality. So its been a real roller-coaster of anxiety lately and I am still trying to get myself around to accepting the fact that I will need OHS again. My first surgery when I was 13 was quite difficult (they had to go in again to fix some bleeding and I had an infection and a fever that was pretty trippy). When I was 21 and the St Jude was put in, there were some post-op troubles with my stomach and digestive system (I was not given an enema) and severe back pain. My cardiologist says right now he is thinking when the aneurysm hits 5.5 then we start talking surgery. My next CT will be next year but I will see him again in 6 months. I'm just started on a beta-blocker and monitor my BP regularly now. My main issue is that I don't know if this doc is on the right path with all this. He has been pretty cold about the whole situation. After not hearing from my GP about the CT results (they were not sent to him as I was told they would be) I called the cardiologist's office. The secretary told me he would call me back and when he didn't I called and was told by her that the CT results were "ok" and he would talk more about them with me when I saw him later the next month. Of course, to me 4.9 was not okay, and at that point I had not even been told what kind of dilation it was or any of the previous measurements on record. So bad I enough I had myself in the dark about the aneurysm likelihood, I still feel I am being kept in the dark. Finding this forum has helped allay that feeling. But the frustration and anxiety are still pretty intense.

 

[AgilityDog]

I'm sorry. I understand how you feel - getting cut on again.

I don't recall the "trigger" measurement for surgery, since I don't have BAV or aneurism issues (at this time), but I'm sure someone will be along to let you know what that measurement is.

You can always get a second opinion, or talk to a surgeon without a referral from your cardio. Either or both may make you more comfortable with waiting or accelerating your surgery.

 

[dick0236]

Hi brucemacd and welcome. I think you will find this forum very helpful. Like you, I never gave any thought to things like aneurysm, mostly because that kind of info was not easily obtainable and was difficult to understand.....I still don't understand much of it. I was just happy that my valve continued to work properly. Now, I realize that "other" things can happen. As others have posted, look for a doc who WILL take the time. I believe that "ascending aortic dilation" and "aortic root" measurements are the same thing....if so my "aortic root" has been at the hi-end (3.7cm) for over a decade, which might indicate that this measurement may stabilize for a long period of time.

PS: there are some on this forum that REALLY understanc these numbers and hopefully they will answer your post.

PPS: I have learned that a future surgery would not be as bad as I thought, although it is something I hope never becomes necesary. Demand that your docs take the time to answer your concerns.....you are the one who is writing the check, or signing the insurance authorization. I have found it helpful to go into the appointment with my questions written out for my docs to answer.

 

[brucemacd]

Thanks for both those replies. I am definitely leaning towards finding a new cardiologist. Part of my difficulty is I have spent decades under a false assumption that I was pretty much out of the woods. If I had known earlier about the high incidence of aneurysms with people with BAV I might have been less unprepared for all this. I do blame myself for that because I've always downplayed my heart condition. The other part of my frustration is based on my own work in the health care field and a sense that many within the profession hold knowledge, support and information back from patients at times out of laziness and a "I'm just doing my job" type approach. Again, this forum seems like a healthy corrective to all that.

 

[Lynlw]

Thanks for both those replies. I am definitely leaning towards finding a new cardiologist. Part of my difficulty is I have spent decades under a false assumption that I was pretty much out of the woods. If I had known earlier about the high incidence of aneurysms with people with BAV I might have been less unprepared for all this. I do blame myself for that because I've always downplayed my heart condition. The other part of my frustration is based on my own work in the health care field and a sense that many within the profession hold knowledge, support and information back from patients at times out of laziness and a "I'm just doing my job" type approach. Again, this forum seems like a healthy corrective to all that.

Welcome, Sorry to hear this was such a shock. I was wonderring is your cardiologist one that specializes in Adults with Congenital Heart Defects? If not I really reccomend seeing one, since you had surgery as a teen and young adult. FWIW my son also had heart surgery in 88 and another in 89 he had a couple more recent ones and there was a big difference in alot of the experiences especially the time he was in the hospital post op and they weere much better at preventing or taking care of some of the more common complications. Hopefully you find it much better when you need your surgery too.
You might want to check the forums and information at the Adults with CHD org http://www.achaheart.org/ there are alot of members who thought they were "done" actually one of their main focuses is trying to get the word to to all the other people who were lost to the system thinking they were "fixed"

ps There is a difference from the Aortic root and the Ascending Aorta, the root is the section of Aorta right after the valve and is usually quite a bit (maybe 1 cm) larger than the rest of the Aorta. The Ascending is after the Root and right before the Arch.

 

[DebbyA]

Hi Bruce,

I'm sorry you have had this shock after so long feeling in the clear. I hope you can find a more responsive doctor, or at least find your current one more responsive when you start asking more questions. I also hope it helps to learn that management of open heart surgery patients has improved a lot since your surgery, both in survival rates and comfort of the patient--that's what my surgeon told us.

 

[Duffey]

I'm not sure how your health system works in terms of finding another cardiologist, but I would want a consult with another cardio to review the CT scan. I think waiting until the aneurysm reaches 5.5 to talk surgery is rather reckless.

As Debby mention, there has been a world of change in valve/aorta surgery over the past 25 years. I had my valve replaced 7 years ago, and there have been continued improvements/refinements in the surgery and post-op care.

Please keep us informed as to what's going on.

 

[Rachel]

So sorry to hear that you're facing another surgery, but as others have mentioned, there have been many improvements in OHS since your last one 25 years ago.

I understand your frustration with your doctor, I had a really bad "keep me in the dark" type cardiologist, so your description of your doctor makes me cringe, and I would definitely find another cardiologist if you can. I also agree with Duffey, I wouldn't wait (and didn't wait) until the aneurysm reached 5.5

Thinking of you,

Rachel

 

[Bina]

Hi Bruce, and welcome to the group.
Since you had your st.Jude put in so long ago, you must have never thought about another surgery at mid life, but stuff
happens and be thankful that you live in modern times and Toronto is a great place for heart surgeries.
If you are really not comfortable with your cardio doc maybe another doc's opinion is going to ease your mind.
My cardio was correct to push me into sugery, but I balked for much too long....just pure chicken ;-)

Anyway, how are your BP readings?
Which beta blocker are you taking and is it working enough?

There is alot of info here on aneurysms, but it can be overwhelming and some of it may not apply to your situation.
Hang in there.

 

[UWMike]

I probably can't offer you much comfort since I will only be going in for my first OHS within the next few months but I must say that the 5.5 cm quoted by your cardio is surprising and a little alarming to me. Personally I share some of your frustration since I myself was only informed of my dilated ascending aorta and the consequent need for an eventual surgical intervention (on top of valve replacement) a little less than a year ago, despite having a BAV. Obviously it comes as a bit of a shock at first since I was always under the impression that the only problem with my heart was the valve itself.

Back to the numbers though. My ascending aorta was measured to be 4.3 cm back in May and my cardio told me that this is 'borderline' for considering a surgical fix. She told me that once it reaches 5 cm they generally strongly recommend surgery and that if I didn't have this fixed while they were replacing the valve, it would in all likelihood lead to a second operation down the road to go back and fix it. If I were in your position I would definitely seek a second opinion. 5.5 cm sounds dangerous to me.

 

[brucemacd]

Lyn,

Excellent suggestion about the Adults w/ Congenital Heart Defects. I am following up with the Adult Cardiac Congenital Clinic here in Toronto this week. This never occurred to me. They will be an excellent source for a second opinion and possibly a new cardiologist. Thanks so much.

Bruce

 

[brucemacd]

And thanks to everyone for your advice and support. I am following up on all this this week and feel much more confident and aware of my options. UWMike, saw your post elsewhere and can relate to your apprehension about being at the start of one's adult life and facing OHS/valve replacement. Even though I think I went a little too far in the "pretend it didn't happen" dept and never kept up with all the developments that are nowadays just a mouseclick away, I did feel ready to move on in a positive way once the whole process was over with. In some ways it kinda motivated me to act on my wishes with more determination than otherwise. I have been married for twenty-five years, got two great sons and enjoy what I do for a living. All done to the accompaniment of a little "click-click" that now mainly only I can hear. I appreciate your support and will keep you in my thoughts as your surgery approaches. There is light and a possibly some ticking at the end of the tunnel.

 

[Lynlw]

Lyn,

Excellent suggestion about the Adults w/ Congenital Heart Defects. I am following up with the Adult Cardiac Congenital Clinic here in Toronto this week. This never occurred to me. They will be an excellent source for a second opinion and possibly a new cardiologist. Thanks so much.

Bruce

Im glad to hear that. They have a very good Adults with CHD center, from things i've heard. Hopefully they will take the time to explain everything well. It always bothers me that regular cardiologists who dont have that much experience with CHD patients, dont reccomend they go to the doctors that do specialize in CHD and all the things that can go along with it.