Overwhelmed

[lildebkay]

I read all of this information and I am just overwhelmed. I am new to this web site and this is my first posting. I have a bicuspid aortic valve. I am going for a second opinion on 1/13. My original cardiologist told me (on 11/20) it is elective for me to have surgery now, but in a year it will be necessary. If the 2nd doc. agrees, I am scheduling my surgery for some time in early February.

I am 36, and he recommended I have a mechanical valve. I don't look forward to the Coumadin though. Maybe everyone makes it sound more dangerous than it really is?? I wasn't all too excited about the 1 drink limit either. I don't drink every day, but I do like to go out and have a few drinks. I bowl and we go camping and I have always had a few drinks at night when I do those things.

I am very short on breath even just talking to people, or while singing at church, or just walking up the stairs in my home. I have read a few other people's stories at this web site also. Is night sweats associated with a bicuspid aortic valve, or swelled feet? I always forget to ask my doc that.

Is it also common when scared of this surgery or stressed out to feel chest pains or tightness? It always goes away, but I can tell if I am angry or upset about something that my chest feels tight. I didn't notice it until after I found out I would need surgery soon.

Well, let me know what you think about any of my concerns. Thank-you and I'm sure I will be writing more soon.

 

[Harpoon]

Hi there! Welcome, you're in a real good place for a lot of support and good information. =)

Don't wait, get the surgery as soon as it can be scheduled. It sounds like you may be experiencing some symptoms of congestive heart failure, the night sweats and the swelling.

Oh, and don't worry about "congestive heart failure" so much, it's not as bad as it sounds, just means that your heart isn't pumping as well as it should and fluid (water really) is pooling up in your ankles because of it. That's very treatable and will probably get a lot better when your valve is fixed.

I have CHF and an artificial tricuspid valve I got back in March plus a congenital heart defect, something called transposition fo the great vessels which I've had all my life.

I'm pretty active, I'm a newspaper photographer and I started taking kung-fu back in December.

Just do what the docs say and stick to it.

You probably don't want to hear what I have to say about drinking alcohol....

First off, I'll say that I miss my Samuel Adams Boston Lager, but not too much. I never really had more than two beers in a night while hanging out with my friends so giving it up hasn't been that hard. On occassion I'll have a little sip of something or other, usually a nice wine at a restaurant that my wife ordered. Beyond that, I figure it's better to do without than to be in an ER because the alcohol is interfering with one of my medications. If you can give it up, you'll be MUCH better in the long run.

Oh, and I use wine in some of my cooking, the alcohol gets boiled off. If I had a recipe that called for beer, you can bet I'd be buying Sam Adams for it, though I don't know what I'd do with the other five bottles......

Maybe make a bigger batch and freeze the leftovers!


Look around here, there's all kinds of good advice to be found and lots of people who can answer all kinds of questions. It's also nice to hear other people's experiences and get a better idea of what to expect, before and after surgery.

 

[Harpoon]

Yeah...

Once I knew what course I had to go, there wasn't any options, just go ahead and do it. I wish it could have been sooner but Dr. Mee's a very busy guy.


I've always had a heart condition so getting this wasn't as big of a shock to me. I knew SOMETHING was going to happen eventually, I was just enjoying my good health for as long as I could (28 years is pretty good for someone with my condition.)

The CHF is manageble. I pay close attention to how much sodium (salt) is in my diet and I cook stuff for myself to be healthy for me. I still get potato chips from the store on occassion, even Slim Jim beef jerky (one of my many vices) but I do it sparingly. I also have to pay attention to how much fluid I drink in a day and take my meds when I'm supposed to. I can take an extra lasix pill in the afternoon or evening if I feel I need it and that helps a lot. My weight's been stable for several months now, it's higher than I'd like it, but it hasn't fluctuated which is pretty common in people with more serious CHF.

I know what I need to do and I do it as best as I can. I don't worry so much about the occassional slip, as long as I don't mess up too much or too often.

It just takes knowing what you have, what you need to do to be healthy, and doing it without worrying about the "what if's" and what might happen down the road.

 

[JimL]

Welcome Debbie! I'm sorry you're having these symptoms, but they are treatable. Don't put off the surgery; I had the same symptoms before I had my bicuspid aortic valve replaced.

Coumadin is no big deal. The key to taking coumadin is consistency. You want to take your coumadin consistently every day, at about the same time of day. You want your diet to be fairly consistent, especially as it relates to Vitamin K. You also want your alcohol consumption to be consistent; in other words, binging followed by abstinence has more potential for harm than consistently having one or two drinks a day.

Harpoon, I agree that Sam Adams is one of the best beers there is!

 

[ALCapshaw2]

Welcome to our World Debbie !

Yep, "overwhelmed" is a pretty typical initial response.

As you learn more about your condition, how to live with it, and that Open Heart Surgery is a highly refined art with a VERY HIGH SUCCESS Rate, you should become more comfortable. Remember, we've all 'Been There, Done That' and are still here to talk about it.

I do urge you to ask your Cardiologist if there are any signs of chamber enlargement (LAD, LVD dimensions from the Echo report) and if so, to proceed to surgery ASAP because enlargement MAY lead to permanent heart muscle damage which can 'slow you down' in your recovery and after.

I wasn't thrilled about Coumadin either, and in fact requested a Bovine Pericardial Valve made from a Cow's pericardium and shaped like a human valve. Unfortunately, my surgeon felt that a 'one time solution' with a St. Jude Mechanical Valve was more appropriate after he 'got in there' so now I'm on Coumadin for life. It's not as big a deal as I feared, although it does make having other invasive procedures a little more complicated. I use a 'pillbox' and medication recort / chart to track ALL my meds and manage to avoid 'missing a dose' pretty well.

I recommend browsing through the Pre-Surgery, Post Surgery, and Coumadin Forums for information. Feel free to ask any questions that come to mind.

Be thankful that your condition was diagnosed in time!

Best wishes,

'AL'

 

[Nancy]

Hi Debbie-

Welcome to the site. It's tough when you hear that you'll have to face surgery some time in the near future. But it's a condition that is at least treatable and the surgery is life-saving.

My husband's been on Coumadin for 26 years. He doesn't think it's a big deal at all. Sure, it fluctuates, but you get tested and make the necessary adjustments in dosage, and then simply go on with life. He takes a lot of pills, so one more is nothing to him.

As far as reading a lot of things, I think it's much better to be informed about what is happening to you. The more you read about things, the less it will affect you. It's tough at first, but does become easier and easier. This is happening to your body, so you might be better knowing what's going on than to be in the dark. Knowledge is power.

 

[fisher6476]

Welcome Debie

Welcome Debie

Wow you sound like you feel how i felt about 12 weeks ago. Went from not having been to a doctor in years to finding out I had heart problems, needed surgery, heard the words heart failure, got overwhelmed and then found this site. The good news here is that you know you have a problem that can be fixed.
So maybe you can relax a little and spend some time going through a lot of the posts on the site and don't be afraid to ask any question you can think of.
By the way, before being diagnosed with a bicuspid aortic valve, and an anuerism I did not experience "chest pains" or any of what I called the classic symptoms of heart trouble (even though in the back of my mind I knew something wasn't right) But after my diagnosis, I noticed slight chest pain and some other symptoms. Probably because I was more "aware and not because I was having more symptoms. My point here is that being overwhelmed, scared,confused,concerned, etc. was tty "normal" for most us. For me a lot of those emptions went away as I studied this site and asked lot's of questions. So relax a little if you can, jump in and get comfortable, learn as much as you can, and ask questions.
One final note on this long winded post. I had "elective" surgery on Dec 5. My surgeon told me on Dec 6 that he sure was glad we did it because my valve was much worse than the tests showed.
I think if you asked everyone here, most will tell you there is no reason to procrastinate here. You will be just fine,
Steve

 

[Jan]

Hi Debbie

Welcome to our wonderful family, so glad you found us,

So you need surgery, well you are among friends now who have either had surgery or are waiting for surgery,

So you are not alone,

Surgery is no fun, but after it your quality of life will be so much improved

Coumadin is not as awful as it sounds, many of us here take it and still lead a normal life, including a beer each day, as Jim said be consistant and you will do fine

Take care

Jan

 

[Kenny F]

You certainly came to the right place!

It sounds like you are further along than many of us - when you start to experience symptoms it is time to get the job done! You are making a wise decision to move ahead.

Do your research on tissue vs. mechanical. I am 45 yo and went with a homograft (human tisue) over mech. I asked for a bovine but my aortic root was in such bad shape my surgeon went with the 'graft.

There is no perfect solution - but you have to live with your decision, not anybody else.

It is certainly overwhelming, but if you will methodically browse thru here, ask questions, take charge of your medical care, you can make it work!

Good luck & God Bless!

 

[Karlynn]

Welcome!

It sure sounds like you have symptoms that warrent you getting your valve replaced now. Postponing it several month just means more effort for your heart and the possibility of permanent damage. Doctors seem really hesitant to operate on younger valve patients. My doc was one of those, and I wish I had it done about a year sooner than I did. I was 32 when I had my valve replaced, and I just turned (cough) 45.

There are draw backs to coumadin, as with any prescription drug. But I think you'll find it very "liveable". As was already mentioned - the key is consistancy. A glass of beer or wine every night is preferable to 4 or 5 every now and then.

I think you will be surprised how much better you feel over all, after you have the surgery and have recovered. (Not gonna lie, you'll feel like a truck hit you the first few weeks after).

Keep coming here for support. This group will give you strength to do what you need to do.

Karlynn

 

[Tom F.]

Debbie - as other have said before me, it is very natural to feel fear. I know that I was very afraid when told I needed surgery, but afterwards I quickly recognized that I should not have been so afraid of it. The success rate is very high, and you will be fine.

I would urge you, at your young age, to at least investigate and consider the Ross Procedure. If that is possible for you it could well mean that you get a one time fix that also avoids coumadin. Coumadin is not the end of the world, but if it can be avoided do so. Many surgeons do not do this procedure because it is very difficult and takes a great deal of training. So you will have to go to a major heart center hospital to find a doc to do it. It may be a better fix for you than a mechanical.

Good luck to you!

 

[MarciaB]

Hi Debbie,

In the beginning, I was sure that I would never want a mech. valve. But the more I read on the web site, the less I was afraid of it. I assume you plan on no pregnancies after this point or the choice would be clear. At you age, a tissue valve would almost certainly need to be replaced. One thing to keep in mind, the second surgery is not like the first. Your body will form scar tissue with each surgery, and the scar tissue can affect the performance of your heart. But . . . also the aortic tissue valves can last a long time.

I am also not sure how I will handle the alcohol part of it. Consistancy is the key to Coumadin. I have found that as I get older, I pay more for that second or third drink anyway, so maybe it's not such a big deal to give it up. We river raft and there always seems to be a lot of alcohol consumed on these trips. I think I would rather deal with that than deal with another surgery. It's not just the surgery itself that worried me, but the "failing" part that comes before surgery.

If your cardio thinks you should have surgery in the next year, I would start planning for it now. It will take some time to set everything up and get your life arranged. It seems that the cardios are willing to wait longer than the surgeons are. My surgeon felt that the most important thing was that we did it before I started having arrhythmias. If you have them before, they are especially hard to get rid of after. Also you don't want there to be a chance of permanent heart damage. Is waiting 6 or 12 months worth the chance of that happening? I asked my cardio about he extra time I would be on Coumadin if we went ahead with the surgery, he said that I would be on Coumadin (or something else when they get it) for 40 years, what's an extra one?

Marcia
MVR 12/9/03

 

[lildebkay]

Thank-you for the replies!!

Thank-you for the replies!!

I certainly am getting more relaxed than I had been the first month after finding out. I am planning to do the surgery in February if the 2nd opinion cardio doc agrees which I will find out 1/13.

Everyone is very nice and helpful here. I will try to get my picture on here. I also hope my husband will check this web site out.

Marcia, I am adjusting to the idea of Coumadin. As you said, by the age of 36, hangovers aren't real fun either and life wouldn't be bad to stop after 1 or 2 drinks. I am not planning to have more children and was told a year ago NOT to get pregnant by my cardiologist. That scared me already then. And yes, I can thank God that this is no surprise. I have been monitoring the heart murmur for several years.

You all have given many tips of good advice including the pillbox. I'm already on four different meds including Crestor for high cholesterol. This is another reason to do the surgery because I can't excercise at all to help my cholesterol. It is high due to genetics the doc says. My last total reading was 264 and my tryglicerides are really high.

One other problem I have had over the last 2 years is that I gained about 20 pounds. I have always been fortunate to be very "skinny". Could this also have to do with my condition? Just curious.

Ok, good night to all and thanks again for your replies. I look forward to talking with you all again soon.

 

[lildebkay]

Wisconsin

Wisconsin

One more question ~ are any of the members of this website from Wisconsin? I am curious if anyone has had surgeries done in the Milwaukee area.

Thanks,

Debbie