3 months post surgery, Doc wants to medicate me more than I'm comfortable with.

[dcarlson]

I posted all the way back in October about my upcoming surgery and I've mostly been lurking since then. I'm now the proud owner of a St Jude mechanical valve, and learning to be soothed by the mechanical.... ticking? clicking?... chirping?


I (39M) was diagnosed BAV at birth and went for an echo in October; I hadn't been in awhile due to Covid and things were not good. My valve has severely stenotic and I had a pretty severe aortic aneurysm. Because of the stenosis and some enlargement of my ventricle I was diagnosed as in Heart failure. When I had the surgery the surgical team put me on meds to support my heart while it recovers, which are similar to mild heart failure meds. (Carvedilol, Losartan, Atorvastatin) Now that I've been transferred to the care of my cardiologist, he wants to put me on their "heart failure regimen" which is much more significant. I'm very hesitant to agree to the meds increase because I already feel better than I've felt in probably 5 years and my heart has already shown some signs of remodeling from the enlargement. For some context, I'm not quite 3 months post-op and I'm comfortably running at least a mile every other day.

When I met with the cardiologist he literally said they don't know what to do with me because the rest of their patients are 60+ with chronic heart issues that have developed over years, and all their statistics are from that demographic as well. Meanwhile, I'm a relatively fit, athletic 39 year old with no issues other than recovery from surgery. He said it might be helpful to ask around to see what kind of med regimens other people who are young and otherwise relatively fit are on.

So, assuming this doesn't violate one of the rules (and my apologies if it does), anyone willing to share what kind of medication therapy you were/are on post-op?

I'm not really looking for advice just some other examples of people in a situation more similar to mine than my docs other patients, for some context in making my decisions moving forward.



I can give more details of what I'm on and what they want to put me on, if it would be helpful.

 

[pellicle]

Hey there, I'm not really able to comment on why you're on what but if there isnt' any justification for whatever medicine then you should question it (if not for just the sake of hearing the justification).

I've always had good results from asking them and seeking justifications as to why. Like are you actually in some sort of "heart failure" position now?

Presently I'm on warfarin, low dose aspirin and metoprolol (tartrate, splitting the 50mg dose across AM and PM)

I just focus on taking what is needed and managing my INR

as to forum rules about what's ok to say ... ¯\_(ツ)_/¯ IDK ... I just say it and excuse myself later if needed

Best Wishes

 

[jeffp]

He said it might be helpful to ask around to see what kind of med regimens other people who are young and otherwise relatively fit are on.

Your cardiologist said that? Why didn’t he just ask you to go on the internet and ask some random people on some forum?

Some cardiologists settle into the groove of everyone falls into the same treatment bucket. I had that after my MVR. He had me on so much meds that once when I complained that I barely had energy to walk around the block his was response was along the lines of “you can walk around the block? We’ll have to up your meds!”. Once I got my wits about me, I fired him and went elsewhere.

You need to look after YOU. 3 months post-op your meds should each have a target condition, not just “our standard protocol is to put everyone on these”. Be you own best advocate.

 

[Timmay]

It doesn’t hurt to shop around for a cardiologist. Use google and get a list of all the cardiologist offices within a distance you’d be willing to drive. Start your research and narrow it down to a few. Setup an appointment with a doc in each practice and discuss.

Make sure to get data too. Get an echocardiogram for sure.

I’m an onyx valve guy (just installed last year). I’m 51. I take warfarin and a baby aspirin.

 

[tom in MO]

Since your cardio stated "When I met with the cardiologist he literally said they don't know what to do with me because the rest of their patients are 60+ with chronic heart issues that have developed over years, and all their statistics are from that demographic as well. " Sounds to me like you need a referral to a more specialized cardiologist. Try Denver.

 

[Cormac_1989]

Hey Buddy, delighted your surgery went well and you are out Running. I had my operation done Dec 7th 2022, AVR. I am 33 year old male. I got an on-x valve. I am taking Warfarin, Aspirin (75mg), Bisoprolol (Beta Blocker 3.75mg) and Colchicine (Used to treat Pericarditis specifically, I developed post Op). I am meeting surgeon on Saturday so will ask about the Aspirin and Beta Blocker as I was hoping not to be on so much meds post op also. The Colchicine is for 3 month only.Best of luck.

 

[vitdoc]

It is hard to know what the cardiologist truly meant. He may have been sort of joking that you are not the typical patient that he sees. I hope he didn't mean he was out of his depth. A lot depends on the degree of "heart failure" that is determined. There are a variety of parameters to look at like cardiac output, elevation of certain heart related hormones and your symptoms such as retaining fluid, swelling of the legs/feet , pulmonary edema etc.. So treatment is determined on the basis of all of these measures. In your particular case you are improving due to the surgery with a non stenotic valve in place. So probably just watching with modest meds might be appropriate unless your parameters are fairly bad which they don't sound like. So if the doctor really is a drift and really feels out of his depth I would search elsewhere.

 

[preciosa1974]

I would run from that cardiologist! I find it odd he wouldn’t look at you as an individual! I am only almost 6 weeks out but no meds so far. BP meds are a maybe depending on how my BP does (right now it’s stable but it was creeping). I question every med. I have a st Jude but only needed AVR with no other issues. So right now I take a baby aspirin, my Levothyroxine (hypothyroid), and warfarin. My cardio always seems pretty open when I question a med

 

[carolinemc]

I posted all the way back in October about my upcoming surgery and I've mostly been lurking since then. I'm now the proud owner of a St Jude mechanical valve, and learning to be soothed by the mechanical.... ticking? clicking?... chirping?


I (39M) was diagnosed BAV at birth and went for an echo in October; I hadn't been in awhile due to Covid and things were not good. My valve has severely stenotic and I had a pretty severe aortic aneurysm. Because of the stenosis and some enlargement of my ventricle I was diagnosed as in Heart failure. When I had the surgery the surgical team put me on meds to support my heart while it recovers, which are similar to mild heart failure meds. (Carvedilol, Losartan, Atorvastatin) Now that I've been transferred to the care of my cardiologist, he wants to put me on their "heart failure regimen" which is much more significant. I'm very hesitant to agree to the meds increase because I already feel better than I've felt in probably 5 years and my heart has already shown some signs of remodeling from the enlargement. For some context, I'm not quite 3 months post-op and I'm comfortably running at least a mile every other day.

When I met with the cardiologist he literally said they don't know what to do with me because the rest of their patients are 60+ with chronic heart issues that have developed over years, and all their statistics are from that demographic as well. Meanwhile, I'm a relatively fit, athletic 39 year old with no issues other than recovery from surgery. He said it might be helpful to ask around to see what kind of med regimens other people who are young and otherwise relatively fit are on.

So, assuming this doesn't violate one of the rules (and my apologies if it does), anyone willing to share what kind of medication therapy you were/are on post-op?

I'm not really looking for advice just some other examples of people in a situation more similar to mine than my docs other patients, for some context in making my decisions moving forward.



I can give more details of what I'm on and what they want to put me on, if it would be helpful.

Sadly, I hope you are going to look for another Cardio, for his information we cardiac patients come in all ages from before birth to death. We are never too young to have issues. I was 38 and my aortic valve was ready to be replaced. Some doctors love to overmedicate with pain relievers. After surgery, most do wean one off the pain meds. Abd then we are using Tylenol, which I only use the extra strength of Tylenol, the generic version. So sorry you are going through this. For we need to have cardio's to trust with our health issues. Good luck if you decide to find another cardio.

 

[dornole]

My cardiologist specializes in valve patients and even did my repair. Maybe you could ask your surgeon for a referral to someone more familiar with valve disease monitoring and follow up? My father in law is on those 3 meds for heart failure and he gets out of breath sitting in a chair sometimes. Personally when I got a waffling answer like that from a doc ( me: “help my newborn twins throw up everything they eat and are losing weight” pediatrician: “maybe try making formula thicker? Or thinner?”) I asked at the NICU where they were born and got a great referral. That’s why I say maybe ask your surgeon. I personally am only on 325 mg aspirin (and atorvastatin but that because my cholesterol is high without it).

 

[dcarlson]

I really can't express how much I appreciate all of your comments... I think I didn't realize just how much I have felt like this doc doesn't understand me or how I want to approach my own health management. Or even just the fundamental stuff like... I want to use this new valve as a tool to get outside on my bike and running... I'm not so interested in medicating just because that's what they usually do.

I'm meeting with surgeon this month so I'll ask him about his recommendations for a doctor who's maybe a little less of a pill pusher.

Meantime, much love to you all, and thank you!

 

[pellicle]

I think I didn't realize just how much I have felt like this doc doesn't understand very much at all

I fixed your typing errors

Best Wishes

 

[dianatony]

I had a valve replacement at end of September. I'm in my 70's. There was a complication of a lung infection. Now 4 months on I do not feel good at all. I get breathless at very little excursion , can't walk far, feel nauseous, and worst very disorientated and dizzy. I see my cardiologist Monday, 2 months before the appointment she gave me because of this. I really expected to feel a lot better. I do have an irregular heart beat (most 0f my life) and now high blood pressure. On quite a lot of meds. Anyone else had this?

 

[Superman]

The challenge at your age is finding a cardiologist who specializes in adults with congenital heart defects. Heart defects are typically the domain of pediatric cardiology. Sounds like you’ve got a heart attack doc who go just doesn’t do congenital stuff. I’d be looking. I went through it as well and it took a long time before my local hospital finally put a team together. So much better when they’re reading the same stuff I’m reading.

Presently I'm on warfarin, low dose aspirin and metoprolol (tartrate, splitting the 50mg dose across AM and PM)

Same. Been that way since I was 36. I’m 50 now. Prior to my aneurysm repair, I was only taking warfarin from when I was 17 to 36. St Jude for over 32 years now.

 

[thomas999]

I was on beta blocker (inderol), digoxin, post surgery, neither did I tolerate well. Now I am only on a light dosage of lisinopril 5mg 1/day for heart maintenance. Warfarin I alternate 10mg/7.5mg 1x/day.
I had an aortic valve prosthesis with St Jude mechanical valve .

 

[Midlo_dave]

I am 50 yr old male and got my ON-X aortic valve and aortic root installed last Wednesday. I was easily the youngest patient in the Cardiology ICU ward, by 20 years. I am currently on a few short-term surgery recovery meds (KCl, Lasix, extra strength Tylenol) as well as Metaprolol, Warfarin and baby aspirin. Warafin is a given. The beta blocker (Metaprolol) is probably very helpful while my heart heals, but I plan to question whether this is needed long-term.

 

[dick0236]

I will be 87 (in a couple of weeks) and I had this surgery when I was 31. I remember being put on Warfarin along with a couple of other meds for several months. Warfarin remained my only long-term med for several decades.......until I reached my 60's when a hi-blood med was added. In my early 80's a couple of other diagnoses have been added that require Warfarin as a treatment drug which I was already taking for the valve. My other routine meds are 81mg aspirin, a water pill, and a mild anti-depressant along with the normal OTC drugs as needed.

I have to "chuckle" when I hear young folks opt for tissue valves because they don't like taking pills........little do they know about growing old with any chronic condition. Meds become a way of life LOL.

 

[pellicle]

(in a couple of weeks)

my goodness, is it that time again ... if I miss it, please accept my best wishes for more happy returns.

I have to "chuckle" when I hear young folks opt for tissue valves because they don't like taking pills........little do they know about growing old with any chronic condition. Meds become a way of life LOL.

I personally think its some sort of mental obstacle to facilitate them maintaining denial of the reality of ageing, and help them continue believing "age is just a number".

 

[thomas999]

I will be 87 (in a couple of weeks) and I had this surgery when I was 31. I remember being put on Warfarin along with a couple of other meds for several months. Warfarin remained my only long-term med for several decades.......until I reached my 60's when a hi-blood med was added. In my early 80's a couple of other diagnoses have been added that require Warfarin as a treatment drug which I was already taking for the valve. My other routine meds are 81mg aspirin, a water pill, and a mild anti-depressant along with the normal OTC drugs as needed.

I have to "chuckle" when I hear young folks opt for tissue valves because they don't like taking pills........little do they know about growing old with any chronic condition. Meds become a way of life LOL.

Which valve was replaced, and with what type of valve ?

 

[epstns]

@dick0236 - Good to see you, old friend! Glad to hear you're still here, giving it a good go.

I think one of the more important things for any valve patient (or maybe just for any patient) is to have an effective two-way dialog with any doctor who is going to be on your care team. I've been lucky enough to find docs like that for my cardiologist, electrophysiologist, gastroenterologist, urologist, radiation oncologist, ophthalmologist. . . you get the picture. I insist on only "keeping" doctors who will talk WITH me, not TO me. I am able to discuss research papers and studies, along with new and experimental treatment options with them, whether these are options that may be needed for my own care, or maybe just of interest to me. The docs I've met who cannot or will not conduct this dialog can take care of someone else. . . not me.

I often "negotiate" medications and dosages with my specialists. Often I bring up conflicts that they just haven't seen in my chart yet. I keep track of where my meds "may" have contraindications, and I debate with my docs whether those potential contraindications are of concern, or are merely things to watch for me. I think that by doing this, I am able to achieve a better level of care and better quality of life. If I want to "live on the wild side" I will confer with the applicable specialist and if their concerns are real, I will follow their advice. Often the issues are out in the "grey area" so we can agree that I will live on the edge.

I do agree with those who recommend asking a prescribing doctor "what does this med do for me?" "Why do I need it?" I do hate it when I need a new med, but then need others to relieve the side effects of the first.