Questions about post-op meds

[cherylchapa]

Chris is going to at the very least get a tissue valve. Don't know what kind yet. He may get some kind of prosthetic material patch or it could be his own tissue like before. He may also get some stents.

So my question is what meds, if any can we expect him to be on immediately following surgery. What can we expect him to be on for the long-term, if at all? What kinds of precautions will we have to take on these meds.

Oh, the cardiologist said there is damage to the left side of the heart from the original surgery that they may or may not have been able to avoid. It squeezes well but does not relax well. Cardiologist said he may put him on some meds for that but not right away. Any ideas what that might be and if there are precautions with that?

I know I can ask the surgeon these questions but I don't want to wait cuz I'm impatient My husband thinks I am crazy for wanting to know all this now. Thinks I'm putting the cart before the horse. Whatever

Thanks for any answers I can get.

 

[Maryka]

I have no answers, just good wishes for all of you!

 

[Lynlw]

Justin has a bovine pulm valve and dacron conduit. He is on no meds. After his last few surgeries, for conduits or valves, he was on aspirin for a couple months and pain meds for about 2 weeks.
As for the left ventricle, I can't help you, Justin does have abnormal movement because of his VSD patches, (I can look up the exact phrasing from his last echo if you want) but is not on any meds for that.

 

[laurad37]

I have a bovine valve and only on Metropolol but that's not because of the valve. Other than that, an aspirin.

 

[cherylchapa]

I have a bovine valve and only on Metropolol but that's not because of the valve. Other than that, an aspirin.

What does that medicine do? Do you have any special precautions to take with the aspirin?

Another one for everyone, do you wear a medic alert bracelet (even those without meds)? Just thinking ahead about how I'm gonna get my boy to wear jewelry if he needs one

Thanks for indulging my curiosity and worry-warting!

 

[deek]

I would imagine he would be on Metropolol, beta-blocker, as this helps the heart to relax and heal. I'm on this, plus Lisinopril, Lasix and Asprin. Can't say for sure, but the Metropolol is a good bet. I'm 9 weeks post-op and in CHF and my cardiologists put me on these to help. When is Chris having his surgery? I'll be thinking and praying for you guys! D

 

[COLLEEN S]

Hi, they make cool bracelets with frogs on them and everything. Just google medical bracelets for kids. I have one but wear it sometimes only. Used to wear it everyday.

 

[kfay]

I don't know if you should be basing what he might be on by what adults are put on. I would have to think there is a different protocol for little boys vs. a 45 year old adult. If he is getting a tissue valve though, I would think that he won't be on coumadin long term if at all and the patch material won't make it necessary either. I have both a tissue valve and a bovine pericardial patch for my asd and took coumadin short term after surgery but take nothing now.

Kim

 

[BackDoc]

I don't think anyone can even attempt to answer this question except his surgeon and his cardiologist. They may not be even to predict what meds if any might be indicated until they see how he is after his surgery.

I side with your huband on this issue. I believe you are worrying yourself needlessly at this point in time.

 

[Lynlw]

I know you asked about medic alert and having a son I understand you concerns about wearing a medic alert. To be perfectly honest, Since Justin wasn't on any meds that ER docs should know about ASAP and didn't have anything in him to make it that he wouldn't be allowed to have MRI, before his surgery when he was 10 and he got the pacemaker, I didn't push the whole med alert thing. When he had his pacemaker we got a gold necklace because he needed to wear one and alot of his friends wear wearing gold necklaces at the time so he didn't really feel "different" (except when he played sports and refs/umpires would tell him to take off his jewelry and he'd have to explain it was a medic alert and he HAD to wear it) and with a necklace, he could tuck it in his shirt and no one would see it. He also tried the sports bracelet with the fabric bands and HATED it because it was always wet and "slimey" from washing hands ect. He was great about wearing it because he knew with the pacer he needed it. After his pacemaker was removed when he was 17, he asked his docs if he really needed a med alert and they said he'd be fine with out, so he hasn't worn one since.
Did you ever think about Chris wearing one before the surgery coming up and if not is there something that will change after this surgery that you think would cause him to need one?

 

[Superbob]

What does that medicine do? Do you have any special precautions to take with the aspirin?

Another one for everyone, do you wear a medic alert bracelet (even those without meds)? Just thinking ahead about how I'm gonna get my boy to wear jewelry if he needs one

Thanks for indulging my curiosity and worry-warting!

Cheryl,

I am an old guy who wears a medical necklace.(for type 2 diabetes condition as well as the heart thing) Mine is plain stainless steel, but you can get them in silver or gold. It's usually under my shirt, not conspicuous but unless I'm mistaken the younger generation considers various kind of jewelry kinda cool, yes? I take one 81 mg aspirin a day and several other meds, but I wouldn't even hazard a guess about what someone else's prescription might turn out being -- this is a very individual thing.

All best wishes....

 

[briansmom]

Cheryl,
You are not being a worry wart (in my very biased opinion). You are in a situation where you have very little control and you are just trying to get a handle on it. Worrying about his medication (and organizing your folder) is one of the few things that you CAN worry about right now. You are a MOM and you sound like you are doing a great job.

I can't comment on his meds because my son was very ill when he got out of the hospital. I also don't know what med will help the wall motion. Is his EF normal?

 

[cherylchapa]

Cheryl,
You are not being a worry wart (in my very biased opinion). You are in a situation where you have very little control and you are just trying to get a handle on it. Worrying about his medication (and organizing your folder) is one of the few things that you CAN worry about right now. You are a MOM and you sound like you are doing a great job.

I can't comment on his meds because my son was very ill when he got out of the hospital. I also don't know what med will help the wall motion. Is his EF normal?

Thanks for the re-assurance. Not sure what you mean about the "wall motion" unless you're talking about the left side not relaxing well. And what is EF? Sorry, I'm kind of a newbie even though we've done this before. There were never any issues so I guess I never learned the language.

Did you ever think about Chris wearing one before the surgery coming up and if not is there something that will change after this surgery that you think would cause him to need one?

He never wore one before. It just never occurred to me that he might need one. He wasn't on any meds and I was always a phone call away. Now he's getting older and more independent and may be on meds. I'm so new at this, it was just something that crossed my mind. Again worrying about things I can't control.

 

[Cozycat]

Cheryl, I'm 67 and now wear a Medic Alert necklace. So much easier to wear than a bracelet. They will cut the chain length to your specs and have dog tag looking ones, etc. My grandson is 14 and his been type 1 diabetic since 2 1/2 years. He has worn all types and likes the sports bracelet, but he's a nerd so doesn't have problems with it getting all gooky and sweaty. But he is now thinking about a necklace since he has seen me wearing mine.
Midge

 

[Megan]

hi cheryl. i was 12 when i had my first open heart surgery (in 1982!) i only had my own aortic valve opened but i have all my med recors from then and it looks like they put me on a beta blocker for 3 months afterwards to help the heart slow down. i also had increased left ventricular wall thickness which did get better and go down after the surgery. if your son gets tissue valve it could probably be the same thing plus a baby aspirin. I was never on meds long term as a teenager so i never wore a bracelet but if he is gonna get a replacement valve its prob. a good idea if you can get him to agree.!

best of luck.

 

[Lynlw]

Thanks for the re-assurance. Not sure what you mean about the "wall motion" unless you're talking about the left side not relaxing well. And what is EF? Sorry, I'm kind of a newbie even though we've done this before. There were never any issues so I guess I never learned the language.



I think for wall motion she was referring to your saying the heart muscle in the left ventricle isn't relaxing (Diastolic ..IF it was not sqeezing well it would be systolic ). EF is ejection fraction and it is a number, usually shown as a percentage, that says how much of the blood that is in the chamber is emptied out with each pump. Also I am not 100% sure I don't believe having a diastolic problem effects the EF since the proper amount would be being squeezed out, it just isn't filling as full as a heart that relaxes well. USually when people are talking about EF, unless they say otherwise they are referring to the left ventricle, BUT they also do the EF for right ventricles and i'm only mentioning this now because with pulm stenosis the EF in the RIGHT ventricle could be abnormal... Justin's usually is, but tends to get better after interventions. BUT the MAIN number we always watch for the pulm stenosis, is what the pressure gradient is across the valve/conduit as well as the pressure and size of the right ventricle.

 

[cherylchapa]

Thanks for the re-assurance. Not sure what you mean about the "wall motion" unless you're talking about the left side not relaxing well. And what is EF? Sorry, I'm kind of a newbie even though we've done this before. There were never any issues so I guess I never learned the language.



I think for wall motion she was referring to your saying the heart muscle in the left ventricle isn't relaxing (Diastolic ..IF it was not sqeezing well it would be systolic ). EF is ejection fraction and it is a number, usually shown as a percentage, that says how much of the blood that is in the chamber is emptied out with each pump. Also I am not 100% sure I don't believe having a diastolic problem effects the EF since the proper amount would be being squeezed out, it just isn't filling as full as a heart that relaxes well. USually when people are talking about EF, unless they say otherwise they are referring to the left ventricle, BUT they also do the EF for right ventricles and i'm only mentioning this now because with pulm stenosis the EF in the RIGHT ventricle could be abnormal... Justin's usually is, but tends to get better after interventions. BUT the MAIN number we always watch for the pulm stenosis, is what the pressure gradient is across the valve/conduit as well as the pressure and size of the right ventricle.

Wow! I have none of this information. Should I be asking for copies of the reports after each procedure/test? Is this information that I should know and understand as the patient's mom? I guess I always thought I should leave the medical stuff to the doctors. But now it seems like I need to really understand all of this stuff to be an advocate for my son's health. It's all so overwhelming!

 

[Lynlw]

Thanks for the re-assurance. Not sure what you mean about the "wall motion" unless you're talking about the left side not relaxing well. And what is EF? Sorry, I'm kind of a newbie even though we've done this before. There were never any issues so I guess I never learned the language.



He never wore one before. It just never occurred to me that he might need one. He wasn't on any meds and I was always a phone call away. Now he's getting older and more independent and may be on meds. I'm so new at this, it was just something that crossed my mind. Again worrying about things I can't control.

Wow! I have none of this information. Should I be asking for copies of the reports after each procedure/test? Is this information that I should know and understand as the patient's mom? I guess I always thought I should leave the medical stuff to the doctors. But now it seems like I need to really understand all of this stuff to be an advocate for my son's health. It's all so overwhelming!

It's up to you how much you want to know, and I'm saying that is the nicest way possible, many many heart parents I know don't know all the numbers details ect and for the most part just the basic understand of the defect and surgeries is fine (that's want my husband knows for the most part) and sometime the more you know the more confusing it all is and for the most part you don't really need the teeny tiny details to make informed decisons.
As long as you think the doctors explain things that YOU can understand and are willing to answer your questions and you TRUST them that is fine.
It couldn't hurt to have copies of the reports, just to tract how the number that are important to Chris's heart go. Most of Justin's ongoning problems are pulmonary, so usually I pay attention to the right ventricle/right atruium and the rest isn't as important. I also have now alot of time to kill and when Justin was born and going thru alot of his worse issues, I worked at a big hospital and one of my friends was a heart surgeon resident so he explained things in more detail than I (or most parents) really need. But I think as long as a parent knows the basic details of what is wrong with their child ( I do MUCH better with diagrams to understand, both the CHDs and repairs) and if docs recomend something, you can ask why and they take the time to explain it that's good.
MAny, maybe most parents are fine with basic knowledge, just like most adult heart pateints are fine just knowing the basics, and don't really want to (or need to) know the smallest details, so don't think you've been lax at all.

 

[briansmom]

Cheryl,
I apologize, I certainly didn't mean to add to your list of things to do. I agree with Lyn 100%. Most people don't know much and they probably sleep a lot better than me. I happen to be a control freak and as my therapist put it "knowledge preserves my illusion of control". I am also in the situation where my son's first docs almost killed him because they were sure that all of his symptoms weren't heart related because he was only 16. So...Even though I absolutely love his current docs, I will never again trust docs 100%. I think my research and my knowledge have paid off. I was very involved with the docs in making the decision to remove my son's LVAD without a heart transplant and I was instrumental in choosing an On-X valve for my son.

You are doing a phenomenal job and already know way more than many heart moms.

 

[cherylchapa]

Deanne - no need to apologise. I always feel like I should know more but don't seem to retain the information I have read. And I certainly have been unable to explain what I have read/heard/learned to anyone else, especially my husband. I am getting no help from him in the research department. Probably because he doesn't feel the need to control this. He'd rather leave it up to the docs. Not me! I hear ya about not trusting 100%! Now that I know what I know, I feel the same way.