Cardiologist has referred me to a surgeon

[DanielB]

I saw my Cardio today to follow-up on my semi-annual echo. It has been one year since I entered the waiting room and though my AO regurgitation has remained pretty stable, I was borderline when it was diagnosed. Today, after telling the cardio about some new shortness of breath with stairs, chest congestion at night and getting winded with simpler and simpler tasks, he said I was good to go for surgery and referred me to a surgeon for consulatation. I'm hoping I can put it off until fall, but we'll see.

I was hoping for clearance for surgery, but I must say it still makes me step back thinking the time is really coming.:eek2: I can't imagine how much I would be freaking out if i did not have all the great knowledge from this site. Thanks again all for providing such good info and support -- I'm sure I'll be seeking more of both in the neart future

Dan

 

[epstns]

Dan - I remember feeling almost the same way. I knew for over 9 years that "some day" I would need surgery. I didn't even feel that bad (although looking backward, I realize that I was fatigued and without my normal energy for over a year before surgery). I kept thinking "some day. . . some day. . . Oh, Crap! It is NOW. I made the decision in December, interviewed surgeons in January and had my surgery on February 28. Fortunately, I was able to plan the surgery on my own schedule, making it easier to be off work and so forth.

The thing that made it all easier for me was to literally write down my game plan, with all the decisions to be made, dates, names, etc. Once I did that, I just "worked the plan" and did what I needed to do or was scheduled to do at any time. I made all the decisions, then let them be - no second guessing myself. With my schedule and plan, and all decisions made, I became almost surrealistically calm and was able to complete the program without any problems (at least mentally - had some complications at the hospital, but those were mine, not yours).

The "work the plan" approach helped me. Not sure if that is your way of doing things, but it helped me to stay calm and to feel that I had retained some measure of control over what was to happen to me. I am now 12 weeks post-op and doing pretty well, in spite of all the speed bumps I hit in the road.

So, I suggest that you get your question list ready and ask away. The folks here have a wealth of first-hand experience and are very good about sharing it to help others navigate the waters we have.

 

[DanielB]

Hi Steve,

I was told a year ago that it would probably be five years, then a hint after my last echo about my heart enlarging may 'change things significantly'. Turns out, symtoms got here first. I too am glad I should be able to do this on my schedule and I like your 'plan' concept. I am an operations manager by profession and planning is what I do best and would feel the most comfortable with one in place. Great idea!

Dan

 

[yotphix]

Hi Dan,

I knew back in 2001 or so that I had a leaky and stiffening valve, which would 'one day' probably need replacement. It wasn't until 2008 though, when I began to notice myself that I didn't have the same endurance I once had, that the doc began to think I was getting close. Sure enough, 5 months later I was meeting a surgeon and picking a month. I know what you mean when you say "it still makes me step back". One of the things that I wish I knew at that point, is how much, post surgery, I was going to feel relieved and pleased to be out from under the cloud. No one wants this for themselves but it is definitely better to be on the other side.

I noticed in your profile that you are a camper in Southern California and, though I'm sure you already know this, you will be a camper when you are done too. I spend a lot of time in Southern California and my wife and I load up the motorcycle with tent, stove and bag every chance we get and camp up in Cleveland NF or just at Casper's or San Mateo if I have less time. Great trails in all of them. Any tips of good spots in SD county?

Anyhow, back on your topic. Best of luck with this, you're passing a milepost on the journey now and in a few months you'll be giving advice to others in the waiting room.

 

[DanielB]

I was told last year that it would be five years in the waiting room, so this shows how you just don't know what to expect. I'm hoping to put it off until January as it fits a whole bunch of things in my familie's lives, be we'll see how I feel.

I have heard from many people that the other side feels so much better - I am exited about that for sure.

As far as camping down here, you have the best in the San Diego marea if you travel the Clevelend NF. Most of the forest closer to the coast has been hit by wildfires in recent years. I'm spending some time in the San Francisco bay area soon and will be visiting my favorite camping and hiking place -- Big Basin State Park. If you haven't been there and are passing through south of San Francisco, it can't be beat - a hidden gem as far as I'm concerned.

Dan

 

[yotphix]

"I'm hoping to put it off until January"

I hope that works out for you. I had the luxury of picking my month, though I was told not to make it more than six months out. I picked June because it worked for family, for my employers, and so that I could recover in summer in Canada. A SoCal winter recovery would be nice too. Not too hot for your crucial early walks. Come to think of it, San Diego is probably the best city in America to recover any time of year! You've got more miles of walkable waterfront than any other place I've been.

Thanks for the Big Basin tip. I'll have to check that out when we are up that way, hopefully this fall.

 

[epstns]

And, IIRC, San Diego has the highest probability of nice weather every day in all of the USA. Something like 90%+ chance of warm, sunny weather.

One time when I visited SD, one of the locals told me that you could plan a picnic for a year from today's date and still have a 93% chance of nice weather. Not bad -- especially compared to my early recovery during a longer than usual Chicago winter!

Good luck! We're here for you.

 

[DanielB]

Hi Steve,

We are spoiled out here with the weather. I've lived here (16) years now and the worst it's been weather wise was a bit of frost on my winshield ONCE. We're so spoiled that I am working on planning my surgery date to miss the 'hot' weather - August/early September when it can get to 90+ degrees with 60% humidity! It's all what you're used to I guess. I'm originally from Illinois, so I understand your weather. We do have to deal with earthquakes, wildfires and a cost of living that is out of sight (we call that the 'Sunshine Tax'), but it's all worth it. Home is home, wherever you are.

Dan

 

[hansong]

Sooner might be better than later, since the potential effects of cardiac problems can't be predicted with 100% certainty.

In my case undiagnosed aortic valve stenosis with a bonus aneurysm thrown in could have resulted in a clot to the brain or quietly bleeding out for no apparent reason. Fortunately for my creditors, my first symptom was convulsive syncope, and after a few weeks of medical misdirection I found out about the valve on Wednesday and had it changed out the following Tuesday. Things might not have so rosy if my first symptom had been dropping dead, but since I didn't know anything about the problem there was no possibility of doing anything about it. You're lucky to have some warning, but that places you on the hot decision-making seat.

Good luck!

 

[ChicagoMammy]

Hi Dan,

Yep - you really have to factor in the weather. I had my surgery on November 29th in Chicago. Bad, bad time of year here. It was recommended I should not go out on days where the wind-chill was below 20F. Let's just say I never got out much for a while. I had no exercise equipment and was in a tiny apartment. Next time I'll go for late summer (fall recovery) or early spring.

It is really scary but you're in the right place as you acknowledge. I was told at age 22 that I might need surgery in my 50s. At age 28 when pregnant I was told - you have severe heart disease. 3 months after my daughter was born I went into AFib and was told I needed surgery. 3 months after that, the day my daughter turned 6 months old I was under the knife. There never is a good time. I can't imagine ever feeling prepared. I am now in the same situation you were in. 6 month visits, turned to 12 months visits (once), back to 6 months and now 3-6. I'm waiting for the ax to fall again. It's great to have people like you and everyone else around here to get us through.

 

[DanielB]

yotphix -- Sorry, I missed inlcuding you in my last reply. hansong, thanks for the input.

I hear you on delays can be hazardous. I'm leaning toward October/November the more I think about it. My cardio did mention that valve stenosis is much more time driven and that my leaky valve does give me some latitude in planning. The good news is I already have a CT scan scheduled on June 15 to check the plumbing out and my cardiologist, in saying I could wait, did add he would do another echo in September if the surgery was later than that to make sure all is okay. One thing that is bearing on my decision is that, no matter when I schedule it, I could get up tomorrow and have symptoms that would take me in right away. It will be an important factor on my final decision, which I plan to make after my CT results are in and I get to sit with the surgeon and get his opinion.

Dan
Dan

 

[hansong]

That's great that regurgitation gives you some breathing room. As I said, my limited experience in cardiac problems was wham-bam-thank-you-ma'am, would-you-like-some-surgery-or-would-you-like-to-die? Your way's probably better.

The cardiac CT scan is a sore point with me, since I may be stuck with the bill for mine if the company doesn't reimburse me. Out of the blue I got a letter from the feds requesting a CT angiogram "for further consideration". My cardiologist was a good sport about it and ordered the test, in the absence of any medical necessity for it, but it's a lot of radiation exposure if there's no legitimate diagnostic reason for the test. The good news is, you'll find out your cardiac calcium score, for what it's worth.

 

[DanielB]

I have read where the CT scan is controversial as a replacement for an angiogram. My medical group has been doing them for a number of years and they prefer them in my case. I understand they are not as good as the angiograms for some things, but, if the CT turns up anything that is suspicous that is unclear, an angiogram can always be done. Another benefit of having some time. This way I avoid the whole process that comes with the angiogram of getting checked into the hospital, knocked out and all that. That's makes the CT route sound good to me.

Dan

 

[Jason]

Sooner might be better than later, since the potential effects of cardiac problems can't be predicted with 100% certainty.

In my case undiagnosed aortic valve stenosis with a bonus aneurysm thrown in could have resulted in a clot to the brain or quietly bleeding out for no apparent reason. Fortunately for my creditors, my first symptom was convulsive syncope, and after a few weeks of medical misdirection I found out about the valve on Wednesday and had it changed out the following Tuesday. Things might not have so rosy if my first symptom had been dropping dead, but since I didn't know anything about the problem there was no possibility of doing anything about it. You're lucky to have some warning, but that places you on the hot decision-making seat.

Good luck!

This is similar to my story, in that I didn't have much time between diagnosis of an aortic aneurysm and surgery. I think looking back on it that for me this was ideal. I am not sure how I personally would have done knowing that in six months I would have the surgery, as the prospect of surgery made me quite anxious. As it was, I didn't have too long to wait and worry about it.

Dan, you are very lucky to have found this site before your surgery, as it has a pretty good calming effect on you to read others' stories of 'been there, done that'. I look forward to hearing how your situation progresses, and hope all the best for you!

 

[Bryan B]

I saw my Cardio today to follow-up on my semi-annual echo. It has been one year since I entered the waiting room and though my AO regurgitation has remained pretty stable, I was borderline when it was diagnosed. Today, after telling the cardio about some new shortness of breath with stairs, chest congestion at night and getting winded with simpler and simpler tasks, he said I was good to go for surgery and referred me to a surgeon for consulatation. I'm hoping I can put it off until fall, but we'll see.

I was hoping for clearance for surgery, but I must say it still makes me step back thinking the time is really coming.:eek2: I can't imagine how much I would be freaking out if i did not have all the great knowledge from this site. Thanks again all for providing such good info and support -- I'm sure I'll be seeking more of both in the neart future

Dan

Dan,

It seems quite normal even if you want to have the surgery to feel better. I had aortic root and ascending aorta dilation that was rapidly deteriorating but I needed financial assistance (cardios had me on no work order for 2 years so I didn't have health insurance). After about a year I finally got approved and I was so relieved. Then it hit me like a punch in the stomach that now I actually had to have the surgery even though this was my second one. After I found out the news the first time I needed surgery, when I got to my car after the appointment I started crying like a baby lol. It is normal to feel this way so hang in there and try to think about feeling better after the surgery. Easier said than done but with the symptoms you are experiencing it is true.

 

[DanielB]

Hi Brian & Jason,

I expect that once I get a chance over the long weekend to get everything organized, it will be alot better. The cardio took me off the ace inhibitor and onto a diuretic Monday and that is already making me feel about 50% better. I expect it will take about a week to to get my body used to the new drugs and off the other. I am indeed just a bit anxious -- I hate loose ends and I'll have a bunch of those until I get past the CT scan and finally sit down with the surgeon. All in all though, all is getting better by the day and I know from experience how time will just fly and it will be surgery day before I know it.

Thanks for the support.

Dan