Any One My Age Facing Heart Troubles?

[Harrybaby666]

Hi There Nadi!!!!

Hi There Nadi!!!!

Hi Nadi,

First, Let me tell you how thrilled I am to hear from someone in Missouri, as I have a cousin who lives in Marshfield, Mo and his wife is originally from Bolivar. This is way too cool. I begin to wonder if I had been in the same situation as you, but because they couldn't find anything difinitive, they had to chalk it up to something. As I have told others, I am considering finding a new cardiologist, as this one cancelled my last 4 appointments. I guess it's time to move on to another doctor. Thanks for your help, Take Care, and I hope we talk again soon.-Harry

 

[Gisele]

Harry

Harry

If you are close enough to Massachusetts you can contact me for a cardiologist referral. That is if your insurance allows you to go out of state. Finding a good doc can be difficult, but you might want to start with anyone who knows any nurses that work in the local hospital. They work aside these docs and they know who the good ones are, so ask around. Good luck.

Gisele

 

[Harrybaby666]

Thank You Hensylee

Thank You Hensylee

Hi Hensylee,
Thank You for your reassuring words It has been hard having no support system around my immediate family-Goodness knows why, but I am certainly grateful for the support that this website provides. I hope that all remains well with you, and I look forward to talking with you soon. God Bless Harry

 

[Harrybaby666]

Hi There Steve

Hi There Steve

Hi There Steve,

I am certainly glad that someone else is there who knows what I am going through as far as "what's coming down the road" I have had an idea that something has not been right for a long time, but couldn't get the docs to listen. I guess that they feel because they are the "doc" that they know it all, and that we don't know when something is not right with our bodies. As far as finding another doc, I hope that I can find one that doesn't cancel appointments 4 times in a row, and then wonder what my problem is...I have been through a couple of docs already, and I begin to wonder if I will ever find one that I am totally comfortable with...As for the waiting club, I guess I should ask the doc about this matter, and util then, please pass the doughnuts. lol lol Have a good one, and hopefully, we will talk again soon. Harry

 

[Harrybaby666]

Thanks Yokina

Thanks Yokina

Hi Yokina,

Thanks for the link. I will definitely check it out... Harry

 

[Nancy]

Hi Harry-

Don't worry just yet about getting a valve replacement. Don't want you to get too far ahead of yourself. Sounds like a wonderful idea to get a second opinion from another card. A fresh set of eyes can make a world of difference.

If and when the time comes for any surgery, you just stay here. We'll all work hard at getting you mentally prepared for the experience. After all, there are almost 800 members here who have had this done, or are close to someone who did, and we know how to talk ya' into it, LOL.

 

[Harrybaby666]

Tests

Tests

Hi JimL

I have had 2 catheterizations done. The first in 1999, which showed nothing, and the second one was done last december, of which they didn't tell me anything. I have also had numerous echocardiograms done, and thusfar, these seem to be the tests to indicate all. I have also had a stress test done, and I started to have chest pains during the test, but they still called it a normal test. Next Monday, I go for a cardiolyte stress test as I went rock hunting, and started having chest pains during the climb and decent, and ended up taking Nitro for it. So I guess this means I should take it more easy...Meanwhile, I hope that I can find a doc that will take a true interest in my cause instead of assuming because of my early age, that I should be in top notch condition. Thanks for your support and encouragement, and I look forward to talking with you in the future. Harry

 

[nadi]

Harry,

If you ever visit your cousins here give me a shout. Also if you do come for a visit I highly recommend my cardio.

Take care

 

[Nancy]

Listen Harry-

Don't ever let anyone tell you that you are too young for heart problems. They are not age specific. That's just bad science.

You need to find someone who believes you and who is willing to take the necessary steps to either rule in or rule out any heart related problems, or anything else that might be causing these symptoms.

Having chest pains upon exertion is always something that needs an answer.

You be your own best friend. Never mind what anyone else thinks.

 

[Harrybaby666]

Hi Gisele

Hi Gisele

Hi There Gisele,

Yes, it is nice to have someone else from New England on this site for support, I live in Rochester, NH and unfortunately, Medicaid will not allow me to go out of state to see a cardiologist, but thanks anyway. I like my current doctor, however, I do feel as though by his cancelling 4 of my past appointments, that he does not think of me as an important case, and this is why I am considering finding another doc. It's either that, or because I am on Medicaid, that I am low on the priority list. As far as your having your surgery at 26, I am sorry that you had to have it done so early, but it is comforting to know that if I have to have it done, I am not the only one who had to have it done early. Take Care-Talk To You soon- Harry

 

[Harrybaby666]

Hard To Deal With

Hard To Deal With

Hi Nancy,

I have to tell you, that it has been a long haul over the past year with my medical issues, and It is SOOOOOOOOOOO Nice to find such caring people who won't let me go through this alone. I have always maintained that when people tell me to not go to webmd, or HeartCenter Online because it will just scare me, that the websites don't know what they are talking about or that I dwell on my medical issues too much, I just think that these are people who just don't want to be informed, they would rather just avoid the issues instead of dealing with them head on. I figure being forwarned is to be well informed....Thanks ever so much for all your help and I hope your husband is doing super. Talk with you soon. Take Care Harry

 

[Creed3]

Hi Harry,
I'm so sorry to hear that you are going through this, but believe me when I say being here on VR.COM is educational and comforting. You couldn't ask for a better bunch of people for support and information.
I am 34 years old and had my AVR 9 months ago. I had no symptoms except for one incident of back and chest pain that lasted for awhile. Because I was so young and the inital tests showed nothing wrong, they chalked it up to muscular pain. Eventually a physical showed that I had a murmur and an echo showed a moderate to severe aortic insufficiecy. Still, none of the docs would relate my one time pain to this problem. They seemed to think it was a coincidence and said that I would need surgery sometime, but it could be years before I needed it. I went through some other mistakes the docs made and I ended up going for a third opinion in another state. It's a good thing I did, that cardio found the real problem. The pain was a dissection occuring in the aorta and then an anuerysm developed. The dissection caused the valve insufficiency. My first docs never even looked into what might have caused the insufficiency. They just said let's wait and see what happens. Good thing I didn't. I was rushed out to Cleveland Clinic for surgery to repair both problems. Basically, it was like the docs didn't want to listen to me, answer my questions or take me seriously. I think they just thought I was worrying too much. My point to this story is, please get another opinion. You need to find a cardio who will listen to you and answer your questions. You need to know exactly what is going on with your condition. Don't let them try to push you around or put you off because you are a Medicaid patient. Your life is just as important as anyone elses. It may be tough, but the right cardio is out there somewhere. I wish you all the best. Keep us informed on what happens.

Take Care!
Gail

 

[Nancy]

Hi Harry-

Pay absolutely no mind to people who tell you not to do research on your medical conditions. Maybe you have good reason to dwell on your problems. No one is telling you what is going on and is blowing you off. You read as much as your little head can absorb. Instead of scaring you, it will give you information with which you can ask intelligent questions when you have to. When you finally have the answers to what is causing your problems, then you can relax for a little while. But, please remember to always be vigilant.

No one person on this planet can know everything. There is almost too much information out there and if you use good resources, it will help you. It matters not where the information comes from as long as it is a trusted resource, and not some far out site. If the information comes from you, someone you know, or your doctor, who cares, as long as every avenue is looked at.

If I didn't do some research on one of my husband's problems, pulmonary hypertension, and get him to an expert on the condition pronto, he wouldn't be here today. It's a rare disease, and requires the services that a specialist can give. Much of the outdated information on this disease says it's fatal. But there now exists several good new cutting edge treatments which can greatly diminish the symptoms, prolong the life span, and thus improve quality of life.

He almost died in December, he was slipping into a coma, couldn't breathe even when just sitting on the sofa, had enormous amounts of fluid all over. His spleen and liver were greatly enlarged, his kidneys were in failure, he was severely anemic and all of his labs were in terrible shape, even with heart enzymes elevated, but he is now able to go out and do yard work, his labs are doing exceedingly well and he's just glad to be alive.

So when I say be your own best friend, you just do what you have to do. If you aren't feeling well, find someone who will believe you. If you let it go without getting the necessary answers, then you are doing yourself no favors.

Best wishes.

 

[Bunny_Rabbit]

And I Am Only 29!

And I Am Only 29!

Hi HarryBaby,

I hear ya when you think that you're the only one out there with this sort of stuff happening to them. But you're not. Is that a good thing, or a bad thing? I'm not so sure yet.

I've got 3 leaky valves, 1 with stenosis, and 1 that has sclerosis, and a little bit of Pulmonary Hypertension thrown in there for good measure. All of my problems seem to stem from a bout of Rheumatic Fever I had as a kid. Although the RF came as a total suprise for my family and myself, as no one even knew I had it. Needless to say we were all shocked.

The good thing is that you've found ValveReplacement.com. You've got an array of first hand experience and knowledge at your fingertips. There's always someone here who can relate.

Take care, and no, you're not alone.

 

[ILoVeNY25]

Hey Harry,

I also wanted to chime in and say hello. Since I was mentioned earlier in the thread. I'm 20 years old and had my valve replacements at 19. My first angiogram at age 18 showed I was in Class IV CHF, And that I needed surgery right away. I had three troublesome valves due to rheumatic fever. I had my aortic and mitral valve replaced with St. Jude's and my tricuspid repaired. So, Obviously you know you're not the only one and you're certainly not the only one to say I'm only ____ Years old. I asked myself that since I was 13 and realized I would need surgery. I recommend you read some of our personal stories on the homepage and just hang tight. Trust me and everyone else when they say waiting is the hardest part. Good luck to you, Take Care and Let us know how everything goes.

 

[lcwhitney]

Harry,

People who tell you not to research your condition have never been through what you are going through and will go through as your condition progresses. The more you know the more you understand and the less likely you are to panic over small things and know when it is a big thing and time to get help. Family members who tell you this do not understand and doctors or other healthcare people who would tell you that like knowing more than anyone else at least that has been my experience. To have people who don't understand what you are feeling is not limited to heart conditions. I have a brother who ruptured 3 discs in his back and actually had doctors tell him that there was no way he could be hurting as much as he said he was. THEY WERE WRONG and anyone who discourages you is wrong too. Please remember that you are your own best ally.


Lettitia

 

[Mara]

Hi Harry
So I thought about not even posting because everyone already said it all.

I was diagnosed with congenital bicuspid aortic valve, AI/AS at about age 4. Had first cardiac cath at age 5. Ross Procedure at age 33 (five days after getting married) and on July 12, I will be two years post-op. I turn 36 on August 23!

Played competitive soccer in a women's league this past Spring for the first time in my life and loved it! I was restricted as a kid to non-competitve sports.

Life goes on, life gets better.

I think this site is proof that valve problems are common among younger people.

Good luck

 

[scottvant]

Harry--

How funny--I just posted my first message to this forum last night, and mentioned the same sort of "Lone Ranger at my age" feeling... The whole experience was jarring because I never knew about my heart condition until it became a sudden life-or-death situation last November. I didn't have time to dig up information, meet others like me, or contribute in any meaningful way to the decisions affecting my treatment. I didn't even have time to get scared. When the doctor told me the news, it felt more like I had been given an unpleasant task to do, like go to the DMV or something. It wasn't until I was a couple of days post-op that it sunk in--"Holy sh*t! What just happened here?!?!?"

In any case, I had my aortic valve replaced at Christmas, and am now dealing with some of the usual issues faced by heart patients--some cardiomyopathy, LVH, too-fast heartbeat (for which I'm on medication), etc. I don't know why but the age thing really got to me, too. The same thoughts just kept repeating in my head--"I'm too young for open-heart surgery," "I'm too young to be taking blood pressure pills!" "I AM WAY TOO YOUNG TO BE DEALING WITH THIS CRAP!!!"

Turns out, I'm not. And neither are you. It just seems like that when you hit the hospital and everybody else on your floor is 65+ years old having coronary bypass surgery. Stick around forums like this one and you'll find out there are PLENTY of "cardiac kids" your own age.

Doesn't mean it doesn't get me down sometimes, it does. I find that if I don't watch it, I can very easily get stuck in the "why did this have to happen to me" trap and spend my days jumping back and forth between feeling sorry for myself and feeling pissed off about everything.

At which point, I have to remind myself of the positives that have come from this--the major one being that at age 35 I have quite literally been given a second chance, a new lease on life, and even WITH potentially limiting heart conditions, I am still young enough to take advantage of the enthusiasm for living that this "second go-round" has offered me...

Hang in there.

Scott

 

[scottvant]

Re: Hi Nancy

Re: Hi Nancy

Hi Nancy,

Thanks for your encouraging words. I do know that 3 of my valves are trace leakage, but my mitral valve is leaking at the mild stage, but I have a funny feeling that it may be worsening by the way I have been feeling lately. I have been soooooooooo tired to the point that I don't want to do anything but sleep, and I have been having bouts with chest pain, to which I have to use my nitroglycerine. As I told Latisha, I am having a hard time communicating with my Doc. The last time I talked to him, I asked him about my valves, and he told me that it wasnt the valves that were going to kill me, it was "some form of heart failure". Did he mean that I have heart failure or was definitely going to develope it? I This is all to overwhelming.

 

[scottvant]

Sorry about that "quoted text but no reply" reply just now. I don't get along well with message boards, usually. Here's what that was *supposed* to say:

<<The last time I talked to him, I asked him about my valves, and he told me that it wasnt the valves that were going to kill me, it was "some form of heart failure". Did he mean that I have heart failure or was definitely going to develope it? >>

Harry--just some further info that might help:

My first post-op echo (one day after) indicated trace to mild regurgitation on all four valves, including the two which were replaced. Still, in my surgeon's operative report (which I have a copy of), he indicated he was "extremely pleased" with the outcome of the surgery and said that, per his own interpretation of the echo findings, both valves were "working perfectly." I asked my cardiologist during a followup how the echo findings could show regurgitation and the surgeon still calls that "working perfectly..." He said that trace to mild regurg is so commonplace it's practically considered normal. In other words, it would appear that even after surgery and a glowing report from all my doctors, I have the same "leaking valves" problem as you--and that unless it worsens, it probably really is nothing to worry about.

Now, re: "heart failure." In case nobody has told you, that isn't actually as dire a situation as it sounds--it's not a "sudden death" or heart-attack scenario at all--it's simply the condition of your heart not pumping blood as efficiently as it's supposed to. It *is* a degenerative condition that *will* eventually have dire consequences if the etiology of the problem is not discovered and repaired, but it isn't going to make you keel over dead suddenly tomorrow, like the name "heart failure" implies. Your doctor probably didn' t mean that you have heart failure now, but if your aortic or mitral valves are leaking more than "mild" regurgitation, your heart muscle will work harder to compensate and that *will* cause heart failure down the road. Which means you need to keep a close eye on things and act as soon as your condition worsens, if it does.

Scott