What treatment/ lifestyle to be followed?

[HennaD]

New to the community and the forum, I am 55 years old. I was diagnosed with hypertension, Rheumatic heart disease, severe mitral regurgitation, atrial fibrillation, LV dysfunction (EF 30%) with Normal CAG. After I suffered an incidence of heart failure last month, I was diagnosed as AF with fast ventricular rate and reverted to NSR by DC shock.

I underwent Mitral Valve Replacement (St. Judes Mechanical Valve) through Key Hole Surgery 10 days back. Got discharged 5 days post the surgery. My ECHO at discharge read :

"PHV seen in Mitral Position, Mean PG 9mm Hg at HR 135/minute. Other sever valves are normal. LV is normal in size. Global LV Hypokinesia. LVEF 30%. LA is dilated. Mild to moderate TR (PASP 40mmHg). No PE"

Current medications include: Acitrom 2mg, Cordarone 200, Betaloc 25mg, Pansec 40mg, Lasix 20mg, Lasiclatone 20mg and Heam-up.

Since the surgery I have a consistent cough and have been hypersensitive to even cooking fumes which triggers the cough and breathing very badly. I have back pain and aches all over the body which makes sleeping very difficult. Anybody else faced these issues? How to handle them?

Since I stay in Delhi (India), air quality outside home is pretty bad owing to pollution, I am avoiding walks outside home for now. I am specifically concerned, anxious and impatient for my recovery timeline (what could be the timeframe and do's/don'ts?) and treatment/ lifestyle to be followed for AF, Global LV Hypokinesia, LVEF 30% and dilated LA.

Any feedback would be much appreciated.

All the best everyone!

- Henna
MVR (St. Judes Mechanical) 2017

 

[Paleowoman]

Hi Henna - welcome to the forum ! Back pain and aches all over which make sleeping difficult are universal after heart surgery. Even though you had keyhole surgery your body will have been maniupulated somewhat during surgery to enable the surgery to get to the right place in your heart, your ribs, for example, will have been pulled which leads to pain in the sternum and back. I couldn't lie down to sleep for six weeks after surgery so slept/dozed sitting/lying on a sofa. Slept very badly, even with sleeping medications. It takes time to recover. Your lungs will be more sensitive because of being deflated and stopped during surgery and then being worked by venilator - going out in polluted air is not a good idea so walking around indoors is the thing to do, and the breathing exercises you were instructed in at the hospital. You need to do walking exercise and resting to enable your body to recover. Certainly 10 days is not long at all. Did the surgeon not give you a rough idea of the time to recovery ? It's usualy several weeks minimum. At some point you should be able to do cardiac re-hab which helps more with recovery. Keep going !

 

[jwinter]

Welcome to our group! Like Paleowoman said, most all of us can understand your pain as we have had them. I slept in a recliner for many weeks after my first OHS.

Give yourself plenty of time and be good to yourself. This is your time to heal.

 

[HennaD]

Paleowoman - Thanks a lot Anne! Advice from a person having undergone what I am going through gives immense courage and confidence. My surgeon has given a time frame of 3 months for recovery but owing to hyperactive nature, I am already very impatient to resume my normal routine. Being tied down to the house, read room (mostly), doesn't help either. I am walking inside the house though. Is walking 3-4 times a day for 10 minutes each time enough or I shall step up? Other than the breathing exercises, any other exercises that I could take up? One more thing, any introduction or intensification of snoring while sleeping on your back?

Thanks jwinter! Will try my best to rest

 

[Paleowoman]

Advice from a person having undergone what I am going through gives immense courage and confidence. My surgeon has given a time frame of 3 months for recovery but owing to hyperactive nature, I am already very impatient to resume my normal routine. Being tied down to the house, read room (mostly), doesn't help either. I am walking inside the house though. Is walking 3-4 times a day for 10 minutes each time enough or I shall step up? Other than the breathing exercises, any other exercises that I could take up? [/QUOTE]
Hi Henna - When it comes to exercise it's best to listen to your body - if you are impatient and hyperactive in nature bear that in mind ! 10 mins walking 3 to 4 times a day could be upped, yes, but do listen to how you feel ! Do you have stairs in your house ? I had to go upstiars to the toilet at least 15 times a day due to the fact that we have only one loo, that certainly was exercise for me - I wouldn't recommend that number of climbs but I had no choice. Other than walking, breathing exercise and stairs, within reason, I can't think of any other exercise in the early days of recovery. When you go back to see the surgeon or cardiologist do take advice from them. Oterwise, just the general everyday things of life, making a simple meal, washing etc all take a bit longer till you get your strength back, but they are all part of recovery ! Make sure you don't overdo it !

 

[Duffey]

Welcome, Henna. You might check your medications to see if coughing is a side effect. Some do cause a dry, nagging cough. The walking is very important so up the duration and number of times if you feel ok doing so. Best wishes, Mary

 

[HennaD]

Paleowoman : Thanks again Anne. Your suggestion to climb stairs is very encouraging. I was a bit apprehensive of whether I could/ should climb stairs. How often should one visit the doctor post-op? My surgeon, after the first visit since discharge, has now called me after 3 months!

Duffey : Thanks for your wishes Mary! My surgeon has just changed a few of my medicines. I will wait for a couple of days to see if they help my coughing. Will try to walk though my recovery.

 

[Paleowoman]

I was a bit apprehensive of whether I could/ should climb stairs. How often should one visit the doctor post-op? My surgeon, after the first visit since discharge, has now called me after 3 months![/QUOTE]
Hi Henna - the hospital where I had my surgery made sure I, and all patients undergoing heart surgery, could climb stairs appropriately before discharge. I understood that was standard in all cardiac hospitals so they should have checked you could do stairs fine before you were discharged. There's no particular 'shoulds' to see the doctor post-op. The cardiac surgeon has given you an appointment for three months' time. If you have cardiac problems meanwhile, your cardiologist could be the person to see if your GP can't help. However, if your cardiac surgeon said to contact him if you have any problems you could do that. All the best !

 

[HennaD]

Thanks Anne!

 

[HennaD]

Want to extend a BIG "Thank you" to Anne and Mary for their encouragement. I am now waking around 1.5-2 kms and climb atleast one flight of stairs a day.

Had a couple of more queries. Anyone faced fluctuation of INR initially? Mine is currently fluctuating between 2.21 - 3.65 after following 2-2-1 gm of Acitrom (Mechanical Mitral Valve). And any experience with introduction if snoring or heightened snoring from earlier?

 

[pellicle]

Hi

Had a couple of more queries. Anyone faced fluctuation of INR initially? Mine is currently fluctuating between 2.21 - 3.65 after following 2-2-1 gm of Acitrom (Mechanical Mitral Valve). And any experience with introduction if snoring or heightened snoring from earlier?

me ... but not initially - still! Those INR numbers aren't out of the range of "common for many" and as I mentioned on an earlier thread going to 3.65 isn't specifically worrisome. If you could give more context (like actual time series data of that) I'd be able to make more comment. Here is my 2015 data (weekly in time series) with dose on the red dotted line [IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c2.staticflickr.com\/2\/1541\/25455579376_2a7ed70af3_b.jpg"}[/IMG2]



This is the 2016 data ... which shows a little more of a bumpy ride

[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c1.staticflickr.com\/1\/656\/32000655005_d5bcba8da1_o.jpg"}[/IMG2]

Still, its managable if you follow simple steps (like documenting things and making adjustments small so as not to set up really big waves)

As bumpy as that looks its actually still > 90% in range

From my initiation on warfarin (2011) to now my dose has shifted around a little (over 3 month periods) from as low as 6mg daily to up to about 8mg ... currently I'm taking 7mg daily to stay in my comfort zone (which is 2 ~ 3)

Snoring is about the same...

 

[dick0236]

Had a couple of more queries. Anyone faced fluctuation of INR initially? Mine is currently fluctuating between 2.21 - 3.65 after following 2-2-1 gm of Acitrom (Mechanical Mitral Valve).

Welcome HennaD. You are very early after surgery and you can expect your INR to bounce around some until they get you regulated and your physical activity levels out some. I suspect your INR range is 2-3 and the readings 2.21-3.65 should not be worrisome. That said, you are on Acitrom which is similar to, but is not the same as, warfarin.....according to a search on the internet, Acitrom stays in your system a much shorter time than warfarin......that may account for some of the range variance ........making proper dosing and dosing timing a little more necessary. The vast majority of folks on this forum are on warfarin (I think) so take the advice you read with a little caution.

BTW, seeing INR readings in .00 rather than.0 makes me chuckle.....and makes the INR reading seem super critical.....which it is not. 2.2-3.6 is every bit as good as 2.21-3.65

 

[HennaD]

me ... but not initially - still! Those INR numbers aren't out of the range of "common for many" and as I mentioned on an earlier thread going to 3.65 isn't specifically worrisome. If you could give more context (like actual time series data of that) I'd be able to make more comment. Here is my 2015 data (weekly in time series) with dose on the red dotted line

pellicle : Thanks a lot for sharing your INR and dosage to ease my worry a bit. I am just into the 3rd week post-op, so I am getting tested much frequently than weekly currently. Below are my readings and dosage in the table ( I have been recommended to stay within the range of 2.5-3.5, preferably above 3)

April	Acitrom Dose (in mg)	INR
8	2	1.45
9	2	2.01
10	2	3.12
11	1	3.3
12	1	3.12
13	2	2.58
14	1
15	2	2.12
16	2
17	2	2.43
18	2
19	1	3.65
20	2
21	2
22	1	2.21
23	2
24	2

By the way, I understand your surgery took place in 2011 and you get your INR tested weekly? I was told it will be tested monthly after the initial months of my surgery.

 

[pellicle]

Hi

Thanks a lot for sharing your INR and dosage to ease my worry a bit. I am just into the 3rd week post-op, so I am getting tested much frequently than weekly currently.

Your welcome and that's normal ... I just posted something I just learned from discussion and then a quick literature scan that may be helpful for you to know also:
http://www.valvereplacement.org/foru...din-user/page7

so its probable that your dose will increase a bit in the coming months.

By the way, I understand your surgery took place in 2011 and you get your INR tested weekly? I was told it will be tested monthly after the initial months of my surgery.

well it all depends on your view. I surmise that the older regime is to reduce testing frequency "once stable" because testing was done a bit invasively with vein blood draws. This is costly, inconvenient and over a lifetime exposes you to more risks (such as damage to the vein from scar tissue) especially if you are younger.

Since the advent of Point Of Care machines many advocate weekly testing. I personally prefer it as the data on the basis for this is clear: the more you are within range the less you will experience any of the hazards associated with warfarin (namely bleed based injuries or clot based ones). Testing weekly has enabled me to remain within range at levels that exceed most clinic outcomes. At $6 per test I'm happy to spend $300 per year on the safety and convenience (lets face if you have to go to work then finding time during the day to go to a clinic for a blood draw is both inconvenient and time consuming ).

No harm can come from testing more frequently, harm comes from being high or low for extended periods and not knowing.

I'm the type to not wear headphones while walking in the city too ...
[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/media.treehugger.com\/assets\/images\/2012\/01\/ikill1.jpeg.650x0_q70_crop-smart.jpg"}[/IMG2]

 

[pellicle]

oh .. HennaD one more thing. Acitrom (I noted in your data sheet) is not quite the same as warfarin, it has a half life which is about 8-10 hours as opposed to warfarin being much longer (40 hours on average).

This will influence how quickly your INR drops if you miss a dose. My first thought was "which country is still using that" and so I observe you are in India.

Almost no one in the world uses the Acenocoumarol series (Spain, Bulgaria, India ... ) and your Acitrom is a brand name of that chemical type) and indeed some in Europe use others (Phenprocoumon) which have much longer half lives to make errors in dose (forgetting or taking two) less volatile.

 

[HennaD]

Welcome HennaD. You are very early after surgery and you can expect your INR to bounce around some until they get you regulated and your physical activity levels out some. I suspect your INR range is 2-3 and the readings 2.21-3.65 should not be worrisome. That said, you are on Acitrom which is similar to, but is not the same as, warfarin.....according to a search on the internet, Acitrom stays in your system a much shorter time than warfarin......that may account for some of the range variance ........making proper dosing and dosing timing a little more necessary. The vast majority of folks on this forum are on warfarin (I think) so take the advice you read with a little caution.

BTW, seeing INR readings in .00 rather than.0 makes me chuckle.....and makes the INR reading seem super critical.....which it is not. 2.2-3.6 is every bit as good as 2.21-3.65

Thanks for your advise dick0236! Congratulations on a golden jubilee (either already achieved or shortly to be achieved) for your mechanical AV! You sure are an inspiration....

I understand your point about difference between Acitrom and Warfarin. I have read more on the two after you pointed it out. I will bear that in mind.

Recommended INR range for me is 2.5-3.5 (preferably above 3). How often do you get your INR tested? Any tips to keep the INR in check?

 

[pellicle]

ahh ...

... That said, you are on Acitrom which is similar to, but is not the same as, warfarin.....according to a search on the internet, Acitrom stays in your system a much shorter time than warfarin......that may account for some of the range variance ........making proper dosing and dosing timing a little more necessary.

I see you already had it covered

missed your reply or I'd not have mentioned it

 

[HennaD]

oh .. HennaD one more thing. Acitrom (I noted in your data sheet) is not quite the same as warfarin, it has a half life which is about 8-10 hours as opposed to warfarin being much longer (40 hours on average).

This will influence how quickly your INR drops if you miss a dose. My first thought was "which country is still using that" and so I observe you are in India.

Almost no one in the world uses the Acenocoumarol series (Spain, Bulgaria, India ... ) and your Acitrom is a brand name of that chemical type) and indeed some in Europe use others (Phenprocoumon) which have much longer half lives to make errors in dose (forgetting or taking two) less volatile.

I was on warfarin prior to my surgery, but my surgeon has put me on Acitrom (Acenocoumarol) post surgery. Since, I am still in the initial stages of getting stable with an anticoagulant drug, should I check with my doctor to switch to warfarin?

 

[pellicle]

I was on warfarin prior to my surgery, but my surgeon has put me on Acitrom (Acenocoumarol) post surgery.

Curious ... you're the second I know of from India. If you were already on warfarin (what for may I ask?) then why shift you from a known to an unknown? (I'm guessing he just likes it ... but that's a guess)

Since, I am still in the initial stages of getting stable with an anticoagulant drug, should I check with my doctor to switch to warfarin?

I would say:

• if you end up having no troubles its not worth switching
• definitely discuss it with your Dr as frankly these things are best done over longer terms with a steady hand. Expressing your question is always a good start
• wherever possible do these things in consultation with your doctors

 

[dick0236]

Recommended INR range for me is 2.5-3.5 (preferably above 3). How often do you get your INR tested? Any tips to keep the INR in check?

For thirty years I had lab draws monthly....the following fifteen years were INR "finger sticks" monthly at my docs office......the last 5 years have been "finger sticks" weekly by self-testing at home. After you have some experience try to go to self-testing.....it is much more convenient and, in my opinion, much more accurate since you spot INR trending faster and can make medicine or diet changes more quickly. My only tip is "take the pill as prescribed and test routinely"....and then live your normal life keeping your anti-coagulant therapy (ACT) in the back of your mind. People get way too uptight about ACT.....it is not that difficult.

BTW, my range is also 2.5-3.5 and I am seldom outside that range.....but I don't get nervous anywhere between 2-4.

PS: it might be a good idea to try switching to warfarin and joining the rest of the world. If, or when, you do switch you will probably need to reestablish your dosing needs with warfarin.....I've had to do that, on occasion, even when switching warfarin brands.