First time forumer and to this site!! Soooo many questions!!!

[kevstickle]

Hi I'm Kevin,
I'm an Asian american in the bay area and was I think born with a heart murmur. I pointed out I was Asian because growing up in an Asian family you always tried to avoid sensative questions. Not saying I never asked question but yeah anyway born with a heart murmur I think and had a mitral vavle replacement at the age of 5 I think again (not sure b/c too young to remember). Pretty sure it's mechanical cause I take warfarin and it clicks like a clock. Now I'm 18 and wished I stumbled on this site sooner Instead of using google.Sooooooo here we go with a list of questions that concerned me for the past few years. Any respectful answer will do.
How long will my valve last?
How long is my life expectancy?
I like weight lifting a little or weight machines but doctor says i can't? What kind of weights can I do?
I get a migraine once a month or so which interrupts me in class during work is it he meds?
Scars on chest are they removable?
I sometimes get a second of light headed ness is that the meds?
I get a lot of bloody noses and I tell my hemo but she all she did was give me nose spray that I don't like to use?
*weird question* so when I wad hospitalized I remember having tubes in the lower rib region that I think filled a tank of blood but anyways for my whole life I always feel a sense of vulnerability ther like when I'm sleeping in bed on my back I always have to cover it with my hands or a pillow, pretty sure it's psychological but can't hurt to ask
Back to the migraine thing I only take tyonol because of warfarin but is there any other meds bc it sucks it still hurts real bad the only way to by pass it is to sleep but I can't just sleep in the middle of a lectur and I can drive home to sleep bc my vision is all blurred up by then.
1 48 am on my iPhone just couldn't sleep bc had these question on my mind there are way more to come for sure. Meds are : warfarin digoxin lisinapril

 

[JimL]

Most of these are real good questions to ask your cardiologist; it will probably take some time to get good answers to them. I also have a mechanical valve, which I expect to last longer than I need it. The thing about weight lifting is probably the straining to lift; that can surge the blood pressure; reps are more important than total weight lifted. I hope this helps a little.

 

[kevstickle]

Most of these are real good questions to ask your cardiologist; it will probably take some time to get good answers to them. I also have a mechanical valve, which I expect to last longer than I need it. The thing about weight lifting is probably the straining to lift; that can surge the blood pressure; reps are more important than total weight lifted. I hope this helps a little.

Thanks for replying soo soon. Yes it helped a lot, I did ask my doctor a few of these questions but don't really give me helpful answers. Thanks again for takin the time in reading this post really appreciate it.

 

[dcc617]

Welcome to the forum. You'll find a great deal of information and support here. The first rule of thumb is 'Ask you doctor questions until you're satisfied with the answers'. You are the best advocate for your health.

Just curious - what hospital system are you using?

 

[Mentu]

Hi, Kevin, and welcome to VR. For what it's worth, it isn't just Asian American families that do not discuss problems. As I was preparing for the AVR at age 59, my surgeon asked me to find answers to a number of questions about my family. It was worse than pulling teeth. I eventually learned that my Maternal Grandfather died with aortic stenosis and that his son, my Uncle Bob, had two valve replacements while his brother who died suddenly at age 50 may have also had the problem. None of my cousins had any idea that they or their children might share some risk for heart valve disease. This provides a very different context for my younger brother, now in his 50s, who has a heart murmur. I have only the faintest of memories of my Grandfather but after my experiences of the past three years I feel a special bond with him.

As for the inadequate responses from your doctor, I would suggest asking them very directly when you next see him or send him a FAX with your written questions and ask for more complete answers. If my doctor failed to answer my questions, I would look for another who will. Again, welcome.

Larry

 

[dick0236]

How long will my valve last?
How long is my life expectancy?
I like weight lifting a little or weight machines but doctor says i can't? What kind of weights can I do?
I get a migraine once a month or so which interrupts me in class during work is it he meds?
Scars on chest are they removable?
I sometimes get a second of light headed ness is that the meds?
I get a lot of bloody noses and I tell my hemo but she all she did was give me nose spray that I don't like to use?
*weird question* so when I wad hospitalized I remember having tubes in the lower rib region that I think filled a tank of blood but anyways for my whole life I always feel a sense of vulnerability ther like when I'm sleeping in bed on my back I always have to cover it with my hands or a pillow, pretty sure it's psychological but can't hurt to ask
Back to the migraine thing I only take tyonol because of warfarin but is there any other meds bc it sucks it still hurts real bad the only way to by pass it is to sleep but I can't just sleep in the middle of a lectur and I can drive home to sleep bc my vision is all blurred up by then.
1 48 am on my iPhone just couldn't sleep bc had these question on my mind there are way more to come for sure. Meds are : warfarin digoxin lisinapril

Your valve should last indefinately, but might have to be replaced with a larger one at some point since you where very young when it was implanted. This is a question for your cardio.
Life expectancy is normal
I use weight machines, up to 100 lbs, but I am older. Ask your cardio
I know nothing about migrains.
Meds can sometimes cause lightheadeness. Ask your doc or pharmacist.
Tendency for nose bleeds is aggravated due to warfarin since it is an anti-coagulant. Try to keep nose moist and "blow" softly. I have found that "sinus wash" products help a lot.
The "tubes" were for drainage but I would not let them bother me or cause me to feel "vulnerable".
Tylenol is a safe med for those of us on warfarin, but ask your doc if your migraines are severe. I would talk with a good cardio about your questions.......and if he can't, or won't, help, find one who can and will. Most cardios are busy people and don't have time for long conversations, and I write out my questions beforehand. Usually I get satisfactory answers by doing that.

Welcome to this forum. It is a VERY GOOD RESOURCE for both pre and post AVR folks.

 

[Superbob]

Hi Kevin and welcome to the forum!

Those are all good questions, and I think your doctor(s) may be the best resource for answers. But I am glad to give my layman's perspective on some of them:

How long will my valve last? This is something none of us knows for sure, whether we have a mechanical or tissue replacement. But a plus for the mechanical is its longevity, on average. Often it's said that they can last for a lifetime. I don't know how getting one at age 5 might factor into that. It is probably reasonable to think that at some time in the future a replacement will be required. Again, ask the medical experts about that.

How long is my life expectancy? As long as you take good care of yourself in terms of diet, exercise, and regular medical checkups (with heart monitoring of course), there is no reason I know of that you shouldn't have a good long life.

Weight lifting: I'm not into that, except for some light, 5 to 10 pounders for toning. I wouldn't go against my doctor's advice. You should have a conversation with him and ask if you can do light weights. His ban may be on the strenuous, really heavy stuff. Ask.

Migraines: Can be many causes for these. Meds is certainly one possibility. My wife had them for years and eventually was discovered to have a brain aneurysm that was capped with surgery. Not meaning to scare you about that, but being checked out by a neurologist and maybe an MRI could be in order if you're having serious problems with them. As I said, can be many causes. Just google "migraine" and you'll find loads of info. Again, talk to your doctor.

Scars removable? As an old geezer, I am proud of my scar (I like to tell war stories and bedazzle the young gals -- hahaha), but I can understand a young person might feel differently. There have been discussions on here about diminishing scars.There are scar creams and such. Do a vr.com search for "scars" and I bet a lot pops up.

Meds: you mention Lisinopril, and it is in several ways a very effective medicine, for bp and protecting the kidneys. However, coincidentally my doc has concluded that my long-term use of Lisinopril has led to a decline in hemoglobin (anemia) and he is switching me to something else. At your age, I doubt that Lisinopril-induced anemia is a problem, but who knows?

Lightheadedness: again, many possible causes, but low blood pressure can be one. Do you have a blood pressure monitoring device at home to check your bp? You can get one inexpensively. Tell your doc if your bp drops below 100/60 or so (or goes over 135/85 or so)... low bp can cause weak, lightheaded feeling.

Take care, Kevin, relax, enjoy life, and by all means ask away here anytime. There are plenty of folks who can offer their own experiences. Cheers....

 

[Lynlw]

Hi Kevin, welcome. I'm glad you found this site to help answer questions. You've gotten some really great answers so far and i agree IF you dont think your cardiologist is answerring your questions find another one. BUT Since you had surgery as a child, I would make sure your docotor specialize in adults with congenital heart defects, (CHD) or CHD. Regular cardiologist dont have that much experience with CHDs and mostly take care of older people needing bypasses etc.
Also you probably would like the forums at the adults with CHD site http://forum.achaheart.org/viewforum.php?f=1 they also have a listing of Adults with CHd centers there. Good luck.

 

[kevstickle]

Wow you guys are so helpful. Went to sleep with a list full of question woke up with a list full of answer thank you guys so much. I'm still at the age where everything is sort of transferring where I'm becoming more of an independant individual and not as dependent on my parents anymore. So lately iv been researching a lot on my condition and I find that finding someone's opinion that went through this more helpful than doctor facts, but yes I know that every human is different. And yeah to lynlw I was wondering when I actually would change all my doctors to adult specialists. My doctors never brought it up. And yeah most of these answers are similar to what my doctor said to me but I'm still glad I got another opinion. Soooo glad I found this site woulda been more helpful if I found it earlier. Always thought of myself as a statistic like I was one in a thousand people to have this because in all my schools the faculty were always astonished wow this kid had open heart surgery. It's a relief to find out there is a whole community on this topic.
I may seem clueless but ask me any questions if you want about me if you want I'm up to contribute as much as you fellas have contributed to me. Beutiful day today in Cali hope you all have an as wonderful day as I have and always be safe.

 

[AgilityDog]

Lots of us with MVP have a history of migraines. I take zomig 5 mg as needed when the aura first starts. No problem interacting with meds.

You don't have to worry about the tube sites, they are well healed. And they DID drain into a "tank" It was a little plastic bulb the size of a small tennis ball, which probably looked huge to you at age 5.

You really should find out all your medical info, including the type of valve you have. I second the notion that if your doctor does not answer your questions, get another doctor!

 

[Lynlw]

Lots of us with MVP have a history of migraines. I take zomig 5 mg as needed when the aura first starts. No problem interacting with meds.

You don't have to worry about the tube sites, they are well healed. And they DID drain into a "tank" It was a little plastic bulb the size of a small tennis ball, which probably looked huge to you at age 5.

You really should find out all your medical info, including the type of valve you have. I second the notion that if your doctor does not answer your questions, get another doctor!

Actually chances are it was probably quite a big container when he had his surgery,most likely he had a pleur evac container that is about a foot and a half square that had water in it to that made a bubbling sound as the tubes drained in it. they usually sat on the floor bedside I was always nervous when Justin had them in and wouldn't stand on that side of the crib since I was afraid since I,m such a klutz I would trip over it and pull the tubes out.

the small rubber bulbs are so much nicer,especially when you want to move around.
but as you said, there isno reason to worry about the drainage scars

 

[Jkm7]

Lots of us with MVP have a history of migraines. I take zomig 5 mg as needed when the aura first starts. No problem interacting with meds.

You don't have to worry about the tube sites, they are well healed. And they DID drain into a "tank" It was a little plastic bulb the size of a small tennis ball, which probably looked huge to you at age 5.


You really should find out all your medical info, including the type of valve you have. I second the notion that if your doctor does not answer your questions, get another doctor!

As Lyn says, chances are it probably was a big container. My first OHS, I had three drainage tubes and they emptied into a large container the size Lyn described. My second OHS, both at Mass General, I had four drainage tubes and again the large containers. They were lined up on the floor next to my bed. I was not permitted to try to lift them as I began walking. The nurse or aide always lifted them for me.

 

[Greg a]

Wow you guys are so helpful. Went to sleep with a list full of question woke up with a list full of answer thank you guys so much. I'm still at the age where everything is sort of transferring where I'm becoming more of an independant individual and not as dependent on my parents anymore. So lately iv been researching a lot on my condition and I find that finding someone's opinion that went through this more helpful than doctor facts, but yes I know that every human is different. And yeah to lynlw I was wondering when I actually would change all my doctors to adult specialists. My doctors never brought it up. And yeah most of these answers are similar to what my doctor said to me but I'm still glad I got another opinion. Soooo glad I found this site woulda been more helpful if I found it earlier. Always thought of myself as a statistic like I was one in a thousand people to have this because in all my schools the faculty were always astonished wow this kid had open heart surgery. It's a relief to find out there is a whole community on this topic.
I may seem clueless but ask me any questions if you want about me if you want I'm up to contribute as much as you fellas have contributed to me. Beutiful day today in Cali hope you all have an as wonderful day as I have and always be safe.

A heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters,(read no medical professionals) there are some minimally invasive surgeries as well so ask away, there is a wealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[kevstickle]

Actually chances are it was probably quite a big container when he had his surgery,most likely he had a pleur evac container that is about a foot and a half square that had water in it to that made a bubbling sound as the tubes drained in it. they usually sat on the floor bedside I was always nervous when Justin had them in and wouldn't stand on that side of the crib since I was afraid since I,m such a klutz I would trip over it and pull the tubes out.

the small rubber bulbs are so much nicer,especially when you want to move around.
but as you said, there isno reason to worry about the drainage scars

Yeah youre actually right it was like the size of the 22 inch computer or something. and the problem isnt that im worried about it its just like i get this feeling there like its vulnerable or something iono didnt feel like asking the doctor because it isnt a big deal.

 

[normofthenorth]

Kevin, if those long-gone tubes are making you feel anxious, then feel free to ask for answers, or help, about that. I've pretty much forgotten about my drainage tubes -- and I never saw what they drained INTO, which may be a blessing! But my sternum scar, which has healed 100%, very well, and long ago, still feels like a very "special" part of my body, 14+ months post-op. Sometimes, it just seems to need to be rubbed down, then it feels fine. Some times when I go to bed and my wife reaches over to me and her hand rests on my chest near my scar, it feels wierd -- maybe "vulnerable" is the right word, though there's no pain or discomfort at all. I'm not remembering anything traumatic, but I'm pretty sure my little "zipper" will never totally go back to being what it was pre-op -- just a random piece of skin. I'm fine with what I've got there, no problem; if you're not fine with yours, it's possible that somebody can help, either with some talk therapy or some anti-anxiety meds. We all have 1000 little things to get used to, and to cope with, before we turn 90, and if you can cope with that, that might be the best result. Or ask for help.

Migraines have many causes and triggers, many of them still mysteries to medical science. It's possible that one of your meds is bringing them on, and it's possible that you're just "lucky", like me. I had lots of bad ones when I was growing up, one a week for a long time. Fortunately, mine were usually triggered by "stress release", so they did NOT happen during classes, but they usually hit me while I was walking home from school Friday afternoon, so they ruined almost half of my weekend. In my mid-20s, I had the first one that I ever got at an inconvenient time. Pretty soon after that, I started out-growing them (many people do, probably most), and I usually got the visual aura for a while, but no headache.

We have some people here whose migraines have gotten worse after OHS/HVR, and some whose migraines have gotten better, and others who've seen no difference. I had a few visual auras a year pre-op, and I think it's about the same post-op. Good luck with yours.

Finally, for nosebleeds: Do you get to see your blood-monitoring numbers (your "INR")? If it's in the proper target range, I wouldn't expect it to make your nosebleeds much worse than anybody else's. I've gone through periods where I get nosebleeds, and lots of other periods where I don't. Obviously, anything you do to irritate your nose -- blowing it compusively, or picking it -- will make them worse. If you're in Northern CA, or in the mountains where it gets cold, a humidifier can help a lot, because dry heated Winter air is tough on all of our mucous membranes. And a simple saline (salt water) spray is usually helpful, as somebody posted above.

Finally, you might want to find a drug store that sells a "styptic pencil". It's a small white stick of minerals (alum, IIRC), usually used by people who shave with "real" razors, and nick themselves. The chemical in it is a powerful water-soluble astringent, that makes your skin go tight, which closes your capillaries (and even semi-closes bigger vessels), so you either stop bleeding completely or mostly stop, while waiting for the clotting to do the rest of the (smaller) job. (Ever eat pickles or sour food, and feel like your mouth is shrinking and closing? Same effect.) Styptic pencils are a little harder to find now that electric shavers are so common, but I found a local drug store that still sells them. I keep one in the medicine cabinet just in case I get a nosebleed or a cut that's bleeding too long (and I'm not on Warfarin). You just moisten it, touch it to the bleed, rinse it off, and put it away.

 

[drivetopless]

Welcome, Kevin~

You may have a little post traumatic stress going on from the tubes. Probably (I'm speculating) since you were only 5 young, they didn't explain what was going on and your mind created it's own explanation for what was happening. Children go through all kinds of phases, too, so if you happened to have this surgery in a "scary" phase, it really could have played mind games with you. It wouldn't hurt to maybe talk to someone if you are still having memories/flashbacks. Doesn't mean you're crazy--it is totally normal that going through something like that at such a young age could set you up for some physiological responses (meaning you mind knows better, but your body is working on instinct).

RE/ Scars- Didn't you hear--scars are cool now. But if you want to minimize it there are several options. The type of scar you have dictates the treatment so you'll need to see a dermatologist or a plastic surgeon for dramatic change in appearance:

1. Z-plasty-- sometimes the scar needs to be released. If you had surgery at a young age and the scar didn't stretch/grow with you, it can be very tight and may need to be released to eliminate a puckering/quilted effect. Doesn't happen much on the sternum, but definitely a possiblity on the abdomen.
2. Collegen injections--If you have a thick raised scar, this can help minimize/flatten it.
3. Laser treatment--This can lighten a scar if it is dark/red.
4. Tatoos-- If the scar is too white, you can actually get a medical tatoo to tatoo the scar more to match your skin tone.
5. Silicone Patches -- This are GREAT, in my experience. It can help flatten/soften even an old scar but you'll have to wear them for several months.
6. There are also several OTC treatments (Mederma, etc) that can help.

OKay, that's all I know about scar maintenance.

Good luck~


Glad you found us.

 

[kevstickle]

Welcome, Kevin~

You may have a little post traumatic stress going on from the tubes. Probably (I'm speculating) since you were only 5 young, they didn't explain what was going on and your mind created it's own explanation for what was happening. Children go through all kinds of phases, too, so if you happened to have this surgery in a "scary" phase, it really could have played mind games with you. It wouldn't hurt to maybe talk to someone if you are still having memories/flashbacks. Doesn't mean you're crazy--it is totally normal that going through something like that at such a young age could set you up for some physiological responses (meaning you mind knows better, but your body is working on instinct).

RE/ Scars- Didn't you hear--scars are cool now. But if you want to minimize it there are several options. The type of scar you have dictates the treatment so you'll need to see a dermatologist or a plastic surgeon for dramatic change in appearance:

1. Z-plasty-- sometimes the scar needs to be released. If you had surgery at a young age and the scar didn't stretch/grow with you, it can be very tight and may need to be released to eliminate a puckering/quilted effect. Doesn't happen much on the sternum, but definitely a possiblity on the abdomen.
2. Collegen injections--If you have a thick raised scar, this can help minimize/flatten it.
3. Laser treatment--This can lighten a scar if it is dark/red.
4. Tatoos-- If the scar is too white, you can actually get a medical tatoo to tatoo the scar more to match your skin tone.
5. Silicone Patches -- This are GREAT, in my experience. It can help flatten/soften even an old scar but you'll have to wear them for several months.
6. There are also several OTC treatments (Mederma, etc) that can help.

OKay, that's all I know about scar maintenance.

Good luck~


Glad you found us.

Pretty sure it's not PTSD i don't get flash backs more like memories I had the surgery I think in st judes but I was in UCSF recovering as a matter of fact I'm here now taking my weekly INR test.... Doesn't someone think that excessive once a week blood test. My first hemotologist retired and she used to give me one once a month. Anyways yeah the nurses were real nice and comforting.
And the scars I wish I was like superbob with fake or real war stories to tell I'm only 18. Maybe if someone can make me up some fake stories that prove why I have some symetrical scars hahahaha Thad be great. But yeah ehh don't mind the scars but if I had a chance to get them off Thad be awesome. It sucks I have this one where its like a second belly button lolol well my number gtg

 

[epstns]

Kevin,

I still go to the gym 5 days a week and sometimes get "odd" questions from young ones about my scars. I tell them a story like this. . .

The mid-line sternum scar I say is from the knife fight I "almost" lost.

The drain tube scars are from small arms fire (could be while in th emilitary or just in the 'hood).

The pacemaker and its scar are said to be non-removable shrapnel.

You'd be surprised how quickly the looks and questions stop.

Of course, I'm nothing to look at anyway, especially at my age, so who's looking anyway?

P.S. I have lots of other scars from all sorts of things, like animal bites, car repair mishaps, surgeries, etc., so I'm just messed up that way. None of it ever bothered me.

 

[selma]

You go, Steve! Wear 'em with pride.

 

[kevstickle]

Hahahaha epstns you stories are funny but you say you have bunch of scars so it looks natural mine are symetrical all I could say would be I was invading the forbidden palace and twin ninjas came to attack m.