Diminished running ability after mitral valve surgery.

[ashadds]

if it helps you feel better about things, I'm totally not aware of mine and don't bother getting into it. I leave that as something for the cardiologist. I prefer to focus on only what involves me:

• managing my INR
• understanding why thrombosis occurs
• knowing how my valve works and the major parameters that effect blood cells and thrombosis
• being aware of my limits through listening to my body (and that's actually a very personal learning process, just like teaching someone proper stretching technique)
• having enough understanding to double check what I'm being told when and if my numbers aren't right

If its outside of my control I'm less interested in it.

Best Wishes

Hi pellicle this is an old post but i feel an important one.

I am very new to all this, I would like to gain more knowledge on these topics

1) Do we need to take aspirin even when we are in range say 2-3 INR ? Different doctors have a different opinion here
2) For a person who is starting warfarin, whats the recommended measure time of INR ?
3) I saw an algorithm that looks like this with a stable dose:

Result of INR is < 1.5 *
Increase total weekly dose by 10% to 20%, consider extra dose

Result of INR is 1.5 to 1.9 * ** ***
Increase total weekly dose by 5% to 10%

Result of INR is 3.1 to 3.9 * **
Decrease total weekly dose by 5% to 10%

Result of INR is 4.0 to 4.9
Option to hold dose for 1 day, then decrease total weekly dose by 10%

Just wanted your opinion whether these are reasonable guides on dosage adjustments

 

[pellicle]

Hi

ok, so, let me start with this

Just wanted your opinion whether these are reasonable guides on dosage adjustments

what follows is my opinion, so if someone else doesn't like my opinion ... well there it is.

I am very new to all this, I would like to gain more knowledge on these topics

1) Do we need to take aspirin even when we are in range say 2-3 INR ? Different doctors have a different opinion here

Firstly different doctors will always have different opinions. Even the research requires you to read and interpret how it applies to you.

I began by taking 80mg of aspirin daily, then after about a year asked my surgeon (yes, I was following up with him) if it was needed. He said not really, but if you find yourself having a TIA now and then yes it is.

I discontinued aspirin for about 8 years, when I found occasional "strange feelings" like being dizzy but not quite. I noticed that it was an eye coordination issue. These were quite transient (10 or so minutes) and rare. However I decided after one event to resume taking aspirin. For simplicity I bought from the supermarket 150mg tablets, cut them in half and had one every second day (recall that the half life of aspirin is about 20 min) and the half life of blood platelets is about 10 days. So this means that I get to mung up some blood platelets in the 20 min that the aspirin is in my system but have a day where fresh ones can be generated.

I've found this works for me and I've had absolutely no issues with GI bleeding anyway.

2) For a person who is starting warfarin, whats the recommended measure time of INR ?

not sure what you mean, but if you mean the frequency of making readings I don't think there is any specific guidance. I've found (based on my and other peoples experiences) that hospitals measure you daily until you're in range and then release you.

Myself when I'm helping someone start I suggest sampling every second day or twice a week for a few more weeks until they're confident (there's always something) and if we can I move to weekly INR sampling (and after 12 years I'm still sampling weekly with occasional mid week samples "just to double check something"

3) I saw an algorithm that looks like this with a stable dose:

there is no such thing as a stable dose for some people; either you:

• accept INR's go in and out of range around a median (essentially widening the range)
• make minor course corrections in the face of trends
• pick a place a bit higher and tolerate no lows but don't really mind the highs

Let me recite "that graph"

with respect to this

Result of INR is < 1.5 *
Increase total weekly dose by 10% to 20%, consider extra dose

Result of INR is 1.5 to 1.9 * ** ***
Increase total weekly dose by 5% to 10%

Result of INR is 3.1 to 3.9 * **
Decrease total weekly dose by 5% to 10%

Result of INR is 4.0 to 4.9
Option to hold dose for 1 day, then decrease total weekly dose by 10%

Firstly I have a real problem with speaking in weekly doses, its meaningless because you'll have to take something daily (unless you're going to down 45mg on Sunday night each Sunday night of the week and forget about it during the rest week). It feels like something written by some practitioner as instructions for a clinical nurse who doesn't have any real knowledge of you or your condition. In the absence of a proper model tuned to you its probably ok (but most people aren't going to know what a 5 or 10% change is or how to impliment it)

Are you on warfarin now?

 

[ashadds]

Hi

ok, so, let me start with this


what follows is my opinion, so if someone else doesn't like my opinion ... well there it is.


Firstly different doctors will always have different opinions. Even the research requires you to read and interpret how it applies to you.

I began by taking 80mg of aspirin daily, then after about a year asked my surgeon (yes, I was following up with him) if it was needed. He said not really, but if you find yourself having a TIA now and then yes it is.

I discontinued aspirin for about 8 years, when I found occasional "strange feelings" like being dizzy but not quite. I noticed that it was an eye coordination issue. These were quite transient (10 or so minutes) and rare. However I decided after one event to resume taking aspirin. For simplicity I bought from the supermarket 150mg tablets, cut them in half and had one every second day (recall that the half life of aspirin is about 20 min) and the half life of blood platelets is about 10 days. So this means that I get to mung up some blood platelets in the 20 min that the aspirin is in my system but have a day where fresh ones can be generated.

I've found this works for me and I've had absolutely no issues with GI bleeding anyway.


not sure what you mean, but if you mean the frequency of making readings I don't think there is any specific guidance. I've found (based on my and other peoples experiences) that hospitals measure you daily until you're in range and then release you.

Myself when I'm helping someone start I suggest sampling every second day or twice a week for a few more weeks until they're confident (there's always something) and if we can I move to weekly INR sampling (and after 12 years I'm still sampling weekly with occasional mid week samples "just to double check something"


there is no such thing as a stable dose for some people; either you:

• accept INR's go in and out of range around a median (essentially widening the range)
• make minor course corrections in the face of trends
• pick a place a bit higher and tolerate no lows but don't really mind the highs

Let me recite "that graph"
View attachment 889661

with respect to this

Firstly I have a real problem with speaking in weekly doses, its meaningless because you'll have to take something daily (unless you're going to down 45mg on Sunday night each Sunday night of the week and forget about it during the rest week). It feels like something written by some practitioner as instructions for a clinical nurse who doesn't have any real knowledge of you or your condition. In the absence of a proper model tuned to you its probably ok (but most people aren't going to know what a 5 or 10% change is or how to impliment it)

Are you on warfarin now?

I am a 33 year old monitoring a stenotic bicuspid valve which is close to needing surgery but not fully there yet. I wanted to make an informed decision with respect to anti coagulation management as a head start before getting the valve. I am an IT professional in the bay area originally from india. My entire family is in india , so I am open to even getting the surgery there . But I do have to manage travel between US and India

 

[pellicle]

but not fully there yet

Reach out when you are released from hospital with your INR over 2 and I'll give you a hand if you don't have a insurance middle man who wants to run the show

 

[ashadds]

Reach out when you are released from hospital with your INR over 2 and I'll give you a hand if you don't have a insurance middle man who wants to run the show

I def dont want them to control my life, I would like to be independent and take control. I will reach out to understand the techniques to be successful. My diet varies a lot for sure,

Do you know members here who have bought warfarin in india ? I hear they sell acitrom in india but I want the same drug in US + India

 

[pellicle]

Do you know members here who have bought warfarin in india ?

I do

I hear they sell acitrom in india but I want the same drug in US + India

they do ... I do not know if its state by state ... ¯\_(ツ)_/¯

but so what? I've taken 6 months supply with me to Finland on 3 occasions.

 

[Motion4663]

This is my first post and I only have a mitral valve repair and not a replacement so sorry if I'm in the wrong place. I've been looking for other people who might have a similar experience to mine after surgery.

I'm now 64 and have enjoyed running off and on most of my life, including the last eight years or so continuous. I discovered I had mitral valve prolapse with moderate regurgitation about ten years ago which progressed into severe regurgitation more recently. But I had no symptoms besides occasional a-fib. I could still run pretty well and my last 10K run at 60 years old was under 47 minutes. A year ago I finally got the surgery to do the repair. It was minimally invasive surgery. Recovery was easy.

I expected that since my valve was no longer leaking I should be able to run at least as well after the surgery as I could before. Maybe even a little better. But the opposite turned out to be the case. I can only run much slower now. Roughly about 2/3 the pace and it's very difficult compared to before. Sometimes I even need to stop and walk. Not enjoyable or rewarding as it was. (If you like to run you know what I mean.) I'm currently working with my cardiologist to try to find out the problem but no clues yet. All tests so far look OK.

I'm just wondering if anyone else has had a similar experience even at any age. Have you been able to get back to your ability before surgery? Or have you seen a significant drop? I'm trying to find out what might be wrong.

Hey Jim,

I came across this thread while looking for a similar experience. I had a mitral valve for severr regurgitation repair 10 months ago with a 35mm annuloplasty band and clefts between P1, P2 and P3 sewn closed, and P2 re-anchored. After steady improvement through cardiac rehab and subsequent exercise, I saw gradual improvement up until a month ago. I am now unable to jog for more that a 1.5 minutes before becoming short of breath.

I had a stress echo today, and told there was not even trace regurgitation. But I do not think they were looking for stenosis. I am now scheduled for a pulmonary function test, so my cardiologist 8s following the same steps as yours. If its inconclusive I am planning on requesting a nuclear stress test. Did you ever get to the root of the issue?

 

[dornole]

Have they checked you for afib?

 

[3mm]

I am now unable to jog for more that a 1.5 minutes before becoming short of breath

Another possibility is PVCs (Premature Ventricular Contractions). Like Afib, this is found using an EKG (Electrocardiograms, or ECG) or a Holter monitor.

I had mitral valve repair and installation of a mechanical (On-X) valve Sept, 2023 using a full sternotomy. By last spring I was within, say, 10% of my pre- heart disease endurance and strength. But then I started to stagnate. This fall I am having occasions when I am very weak, fatigued, and out of breath. I have PVCs about 20% of my heartbeats on average. When there are PVCs, it reduces the efficiency of my heart (my ejection fraction goes down), so I lack adequate oxygenated blood. I usually do not feel anything wrong in my heart while this is happening. I only know it is happening by looking at an EKG. I have a Kardiamobile 6L EKG that I purchased which provides this information. I've also used a Holter monitor for 7 days so my electrophysiologist can evaluate me.

 

[Motion4663]

@3mm I ended up getting a second opinion with another cardiologist, and am very glad I did. My 1st cardiologist (who diagnosed the MV regurg) told me after the stress test that I should 'exercise as much as I want.' They seem to be content that I am back to work and no longer in acute heart failure like when I met them. As it seemed they are not taking me seriously, I met with another cardiologist who decided to start fresh: full panel of blood labs and 2 week Holter monitor. After hearing my timeline of symptoms and triggers, they did bring up the possibility of PVC's or arrhythmia's, but want a clear diagnosis to be able to determine the best treatment plan.

I did get good news from all this; 2 cardiologists and my heart surgeon all confirmed through the stress test that the valve repair is holding and functioning as designed. I was told there would be ups and downs with recovery and life after surgery, and that sure is accurate.

 

[MartinF]

I recently found this thread. I had mitral valve replacement 12 years ago. I have been running most of my adult life. Before the surgery I ran a 21:55 5K and was getting back into shape. I think I was 53. Then the surgery when I was 55. In cardiac rehab they had me running 15 minutes on the treadmill. I could do that. But after recovery it was difficult at the start of the run. It felt like I was hitting the wall. I had to go slower for about the first 10 minutes and then it was more normal. But I never got to the same speed or distance as pre-surgery. My longest run has been 7 miles and best 5K was 27:15. That was years ago. Now I'm not running much but it's a motivational issue. I walk daily.
I always say my muscles don't get enough oxygen. I attributed it to low EF (47) and the fact that my heart muscle was cut and probably not as strong. The valve is a 33mm tissue valve.
My last 5K was in Oct 2021 and I ran 35:50 on a sandy and hilly course through vineyards. I wasn't running much then and was happy with the time. My notes say 4th in age group (60-69).
It sounds like my experience is similar to others. Now that summer is over here in FL and temps are cooler I hope to get some runs in.
Martin