How do you think of anything other than possible surgery?

[runningscared]

Hi,

My name is Mary and 3 years ago while visiting my Dr. for a running related injury he noticed I had a murmur. I had an echo done and was told, 'don't worry, it's innocent, only mild/trace reguritation.

So, fast forward to 2 weeks ago, I go to a new Dr. for yet another running related injury and while he listens to my heart he says, "wow, that's quite a murmur you have there". He too sends me for an echo. I went back for the follow-up this past Wednesday, he compared the two echo's, (I had brought in a copy from the first) and said he would feel better if I had a cardiologists take a look at it. All the numbers that I could see were in the normal range except for the part where it says, "the arotic valve appears to be trileaflet. The leaflets are echo bright, consistent with aortic sclerosis. Doppler estimates a peak systolic gradient of 43 mmHg. with a mean gradient of 24 mmHg and a valve surface area of 1.2cm. The increased velocities across the aortic valve may also be due to increased stroke volume and moderately severe aortic insufficiency. The dimensionless index using velocity time interval is 0.48 and using maximum velocity is 0.58. (Index equal to or less than 0.25 is considered severe aortic stenosis)

I'm just freaking out. I am so afraid of having to have OHS. I can't even think straight right now.

It doesn't help that my husband was just diagnosed with Liver Disease, yes,he is an alcholic, I was always the health nut, he was always the "happy drunk". I love him dearly, he is good man and a loving Father and husband. We have an 11 year old son.

My biggest fear is that my husband will not survive long and I may not be too far behind. I hate the thought of my son losing us both at such a young age.

How do I stop being so scared? I feel like I'm paralyzed, even though the Dr. told me I can continue to run, I'm afraid to now.

Thanks for listening. Please tell me what to do to calm down.

Thanks again.

Mary
(46 yr old female, never any health problems until now)

 

[tprice54]

don't be

don't be

Mary, welcome to the board. I just was diagnosed a month ago with aortic valve calcification, and the people here were a big help. I'm sure the seasoned veterans here will respond regarding your specific numbers, but as a runner for 20 years and 10 marathons, let me say if your doctor says it is okay, then go ahead. Feel free to wear a HRM and keep your heart rate lower. Exercise is good, and I'm sure you know how running can clear your head.

 

[Marguerite53]

Hi Mary. Okay, breathe. It's gonna be fine. There will be a lot more people on after me to "ditto" that.

Aren't you smart to have (a) gotten a copy of your echo in the first place and (b) taken it with you to your new doctor!! Knowledge is power in this game. You should definitely follow up with a cardiologist. It is important to have first rate technology doing the echoes and first rate techs and doctors reading them.

I just had my surgery 4 weeks ago. There were great drugs and very little pain (that I remember!). I have 3 children in college and a loving husband and it was definitely freaky to think of the possibilities. So I just didn't!! I kept my arms around all the thousands of success stories, all the wonderfully talented professionals and caring staff and high tech hospitals. I made sure I was completely confident in my choices (valve, cardio, sugeon, hospital) and just let 'er rip! It is what it is.

You won't know until you visit with the cardio (and go in armed with questions on a piece of paper ) how far away you are from surgery, or what the cardio will use as a guide (numbers, symptoms, etc.) to decide when you'll need surgery. Many of us waited years. Many of us are still waiting!!

I'm very sorry for your husband's illness. Perhaps they have caught it soon enough to help him survive it. I know some of us have had several huge things going on at once and it can be a mind-bender, for sure.

Please feel free to come here with any and all of your questions. There is a lot of accumulated information here. But none of our info will be as good as that you will receive from gifted professionals. We can only help formulate your understanding......not diagnose.

Hang in there.

Marguerite

 

[Ross]

Mary welcome to our world. We all felt that way when it was us too. Fact of the matter is, valve replacement surgery is NOT a death sentence. Maybe 20 years ago or so, but not any longer. Sure there is some risk, but far more people are alive then ever before.

First off, these guys are going off echo reports and echos aren't necessarily good for measuring much. The differences in labs and techs ability to do them properly makes a huge differnence in what is seen. If your Cardiologist is serious about finding out, you'll be having a lot more tests very soon. Those will tell the full story and the decisions will be made after those.

Until then, kick back, breath, relax as much as you can and rest assured, you will be fine in the end no matter what comes up.

 

[Kathleen]

Worry

Worry

My oldest daughter was 9 years old when I had the first of four open heart surgeries. She is now 35 years old and just left with my beautiful 5th granddaughter after taking me to lunch. Never for a moment would I have thought I would not live long enough to hold, hug, kiss and love all my five beauties. You get through because it is all in the hands of the doctors and nurses and your part is to have the most positive attitude you can going in. I would do them all again to have what I have had and have now.
Kathleen

 

[Mary]

Hi Mary. Okay, breathe. It's gonna be fine. There will be a lot more people on after me to "ditto" that.
Hang in there.
Marguerite

Ditto! Ditto!

 

[twinmaker]

Mary, Welcome aboard! We're glad you found us. You have started out on the right foot by being involved with what's going on with you. Good for you! That's a lot of the battle, believe me. There are many knowledgable people on this site, and they can advise you about what questions to ask the cardiologist and other things to discuss with him. They are also great listeners. I have had two open heart surgeries, and as Ross said, we've all been where you are now. In fact, some of us with a lot of procedures and surgeries under our belt still get rattled about things. Just know that what you are experiencing now is NORMAL. After getting over the initial shock that there MAY be a problem, try to move forward and be proactive (which you have already done just by getting on this site). Also, I know it's hard, but try to wait until you see the cardiologist before jumping to any conclusions. Believe me, I'm not preaching...I still have trouble with that one even after over 30 years of heart problems. But again, as Ross said, there have been soooo many strides made in valve replacement and repair. The vast majority of people do fine. I know it's frightening when you have a young child involved, but getting checked by the cardiologist is the best thing for you and him. He needs his mom to be well. Many of us on this site have or have had small children while we were going through this stuff. I'm so sorry about your husband. We are also pretty good listeners with each other on here about the other tough things that are going on in our lives. These other things affect our lives as well as the heart stuff. Please know that we are here for you. Again, WELCOME! LINDA

 

[hensylee]

Hi,


How do I stop being so scared? I feel like I'm paralyzed, even though the Dr. told me I can continue to run, I'm afraid to now.

Thanks for listening. Please tell me what to do to calm down.

Thanks again.

Mary
(46 yr old female, never any health problems until now)

#1. You took the first step to peace by joining this site.

#2. read as much as you can - just get a cuppa whatever, sit down at your computer and read and read and read

#3. Ask as many questions as you can think of and somebody (probably a bunch) will give you answers.

#4. last, WELCOME to VR. We are here just for you.

#5. Blessins......

 

[Der Biermeister]

Hi Mary

Welcome to our zipper club

Ok - you are scared. Yep, btdt. All of us have.

I too couldn't accept the fact that I had a defective Aortic valve. Not me - not the big healthy lug that I am. (Btw - I am still trying to find out exactly what caused my AI, as I don't believe it was disease or calcification.)

You have so many things going for you IN YOUR FAVOR that the odds of a bad outcome are so miniscule, they don't even register in the stats. Your age for one thing. Then there is your physical condition. THAT is perhaps the best thing you can do going into surgery (which at this point you don't even know if you will be having surgery). But assume for a moment you have to -- just stay in condition right up to the day before your surgery and honestly, you will breeze through it like a hot knife through butter. On your 2nd post-op day you get moving again, and never look back. Simply choose a damn good surgeon and medical center and then RELAX -- or at least be less anxious about it.

You may get mixed signals about how intense you can exercise from now until surgery. If it were me, I'd cut it back to about 3/4 effort. But others, who are probably better qualified to answer, may say keep on keeping on.

Anyway - most of your questions will be answered here and be sure to do a keyword search on any topic in the archives.

 

[Janea]

Mary, I am a runner too. I felt the same way as you (scared to run, scared to die and leave behind my 3 cutle little kids). If you are worried about running, than walk. There are so many health benefits to walking. I stopped running and started walking hills and felt much more at peace and was able to stay conditioned. As for feeling scared, we all have to walk through the pain and sift through our fears. There is peace out there and you can find it, but it is like any mourning process. You are grieving the loss of your health (though do not depair, your surgery should extend your life and make you healithier). It's not the same though, you used to be the "healthy one" and now you are aware of your mortal frailties and you feel vulnurable. You are also mourning the loss of your husbands health. You have to experience this sadness but you can move through it. You will move through it. Just give yourself the time you need and give yourself permission to mourn It's totally normal and we have all been through it. Many people on this website have been through procedures and dissapointments I cannot even imagine enduring. I feel strengthened by their long suffering and ability to bounce back. The human spirit is truley amazing, as if God's ability to heal our hearts and bodies. Best wishes to you in your journey.
--Janea

 

[tobagotwo]

Welcome to the club. It hit most of us that way - like a sledgehammer in the gut. It takes a while to get past the shock and terror. You may run through an entire grief cycle.

And you get boring to the few people you can talk about it to. They seem to fall into three groups: 1) They think it's like clogged arteries, and is somehow linked to what you eat (it's not), allowing them to comment at length on your lifestyle; 2) They have horror stories about someone who had something just like that and (fill in the blank with some awful story); or 3) They just pass it off with, "Oh they do things like that all the time now," as if it were nothing.

Or you just wear their ears out. You're among fellows - we know what it's really like. So you get to talk about it here.

Of any of them, it's actually closest to number three. However, it ain't just nothin' if you're the one who has it. And there are more outcomes to consider than just complete success or death. It's scary and surreal.

A few nonhealthprofessional thoughts...

From the sound of the echo results, it appears you have some aortic calcification (being referred to as sclerosis) which is causing aortic stenosis. This is a fairly comon track for AS to follow, and is what my own did. It's a gradual process. It used to be termed senile aortic stenosis, as it usually happens in people older than you or me. It doesn't mean that you have any other arterial problems or sclerosis. My own arteries were very clean, other than my nasty valve.

The 1.2cm² aortic opening is generally indicative of moderate stenosis, as are the pressure gradients of the blood passing through the valve opening (the numbers measured in Millimeters of mercury). This means you are likely a few years away from any surgery. Surgery usually isn't contemplated until you're at least below .8cm².

You have a "normal" (trileaflet) valve. This means that there is a far smaller likellihood of troublesome additional issues, such as aneurysms and root dilation. When you do have surgery down the line, it's likely to be a simple procedure (well, simple to a heart surgeon). With average health otherwise, and your age, the odds on that surgery are as good as they get - probably exceeding 99%. That's better odds than crossing Rt. 1 on foot in Jersey.

Don't be discouraged. You'll have longer periods of not contemplating surgery as you go along. You'll be surprised - when the time comes, you may actually be eager to get it done. Until then, avoid shovelling snow.

Best wishes,

 

[bobcatrel]

You've come to the right site

You've come to the right site

After the Columbus Marathon in 2000, I went in for pre-op for knee surgery. Within seconds I was told I had a serious heart problem. That's how I found out about my aortic stenosis/regurgatation. So finding out this way is not unusual.

You have come to the right website for support and info. As you noted, you
will freak out and go through many stages of dealing with in. I spent hours at this site reading posts and trying to understand symtoms, measurements, treatments, etc. This site was great!

At this site you will find differences of opinion sometimes which I thought was very useful in developing questions for my cardiologist and eventually my surgeon. You may find this site for that also.

As far as activity, try to stay active as possible. I think the better shape you are in at the time of surgery the easier it and the recovery will be.

At the same time be aware that your activity may mask some symptoms. For example - an inactive person may develop swelling of the feet and legs. A runner or walker may not notice this as much because the muscle contractions, while running or walking, will help pump the fluids out of the limbs. The same goes for fluids/congestion in the lungs.

You may not get a lot of helpful advice from the doc on what you can and cannot do. Most cardiologists do not have a lot of experience in dealing with active people that are running and will give you extremely conservative advice on what you can do.

So I guess sumnming up my advice:
1. Stay as active as possible.
2. Moderate exercise is much better that pushing 100%
3. Read, read, and read posts at this site
4. Talk to people that have been in your situation - similar age, lifestyles, heart condition, etc.

Good luck!

 

[MarkU]

As far as activity, try to stay active as possible. I think the better shape you are in at the time of surgery the easier it and the recovery will be.

<EDIT>

So I guess sumnming up my advice:
1. Stay as active as possible.
2. Moderate exercise is much better that pushing 100%
3. Read, read, and read posts at this site
4. Talk to people that have been in your situation - similar age, lifestyles, heart condition, etc.

Good luck!

Definitely some good advice.
Being in good shape definitely helped me get through my valve replacement surgery.
I would second the advice about moderate exercise - one mistake I made was pushing too hard in the months before my surgery and developing some enlargement of my left ventricle due to the inefficiency of my bad valve.
Another thing to know is that today valve replacement surgery is rather routine (yeah, I know that's easy to say when you not the one facing it...). Sure there's some risk with any surgery, but the odds are way in your favor of coming through it fine. I was 47 when I had my AVR. They had me sitting up that afternoon and out of bed walking the next day.
Hang in there. Lots of good folks here to offer help and support.
Mark

 

[OldManEmu]

Don't Panic

Don't Panic

Mary as tobagotwo says you have some time until your facing surgery so you can investigate all your options in that time and choose the one that most suites you life style. MarkU has given some good advice stay active however don't push yourself and end up with heart enlargement. It can be a shock to think that some day your chest is going to be opened with a power saw. This is not the end of the world; most of us here have undergone VR and come out the other side.

 

[KAJ]

Mary,

Those of us who have been through OHS ,and those who have family/friends who have it can testify that your feelings and fears are perfectly normal. There are many different things you can do to help reduce the stress and anxiety especially if surgery is needed. Sometimes the waiting is the hardest part. What helped to reduce my fears was that I kept telling myself that God had sovereignly placed each member of the surgery team in that OR. Therefore, their hands are God's hands. I will always believe that. I even told that to the surgery team just before they put me under. Others have and will continue to give you suggestions on what helped them cope with getting ready for OHS.

Karl

 

[marky]

Ditto to everything said here.. I just found this place myself a few weeks ago before my 'surprise' surgery! this is good avice found here and a great community.
Take a deep breath, it will be ok
..and welcome!

 

[Kristy]

Hi Mary,
Your fears and anxiety are real and normal. This forum will help you connect and hopefully give you encouragement and strength. For me, reading posts from those who had already been through surgery gave me hope. Keep reading and asking questions, your not alone.

Kristy

 

[runningscared]

Hi All,

I can't thank all of you enough. You have already put my mind at ease. I was just totally flipping out on Friday, but I did do alot of reading and soul searching and reallized, if it needs to be done, then it needs to be done. I am just thankful now that I live in the day and age where it can be corrected.

I did go for a 3mile run/walk on Saturday, and I really think that made me feel better. Like I said before I am getting over a running injury currently so I am not running my normal mileage anyway. But it just felt soooooo good to get out in the sunshine and do what I truly love, run.... (okay, jog)

I have an appointment with the Cardiologists tomorrow to go over the report. Should I get a second opinion regardeless of what he says, good or bad?

I wish I could find a way to help my husband stop drinking, that is what he needs to do now in case he should ever need a liver transplant, which is the direction he is headed in if he doesn't quit drinking, and he won't be able to get one unless he is sober for at a minimum of 6 months, ahhh, but that is another story.

Again, thank you all so much for easing my mind a bit. I'm not ready to jump right onto the table yet but I feel better knowing I can come in here and express my fears and emotions to folks who know what I am going thru.

I have alot of belief in online support type forums because without them I never would have quit smoking over 6 years ago.

So, if you don't mind, I'll be hanging out here and if you're interested I will let you know what the Dr. says tomorrow.

Thanks again!

Mary

 

[twinmaker]

Mary, please be sure to let us know what the doctor says tomorrow. We care! LINDA

 

[inlaguna]

Mary,

There is some great advice listed above. I lived with my AS for 40 years ( diagonosed at 18 months with BAV) and I was actually thrilled when my valve stayed at 1.2cm2 for two yearly echos in a row. It was 6 years plus after that when I had my surgery.

I would say ask about those other tests and it's always good to get second and third opinions. I talked to 2 cardios, a GP and 2 surgeons and that doesn't count the other docs I discussed it with the throughout the rest of my life.

I exercised up until a week or so before surgery. I was at the point where I could only run 12 minute miles ( at best ) , but I did what I could. Spent a lot of time on the bike and elyptical machines. I also did some very moderate lifting. I am convinced that being in better shape help me recover more quickly.

As for being scared and wondering about all the other what ifs......we all did. I was on surgery number two ( and there are many other here beyond that) and I still was quite scared. I will agree that most reach a point where we accept it and just want to get it done. I did and actually moved my surgery date up several months to get it over with.

Good luck with all!

Dan