I've crossed the line into severe and need to make a decision

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Chuck C

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this sort of 5hit is just impossible to weed out of the system ... to those who aren't without support from the experienced imagine what sort of message this sends to the patient and how long that may take to undo?
And the poor women on warfarin who believe the no razor nonsense, walking around with hairy legs. Well, I know that in Europe that may be appealing to some 🤣
 

jlcsn2015

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jlcsn2015- still happy with the decision to go mechanical? How long since your surgery? Any regrets? Thx
Happy to answer, "for me", the question when my surgeon interviewed me went as follows:

"Surgeon #2 in the country said to me: you can go either way, tissue back here on your high 70s ( i was 62), or never come back here for valve failiure.
One, no pill, the other must take pill" -

I then thought about it for 5 minutes and said to myself "Do i want to PLAN to be back in here at 70++??, HELL no;

"for me", does not make sense to PLAN to go back to a hospital at 70+, there are LOTS of things always around Hospitals "air" even before current VIRUS;
PLAN to put my family through this again ?, nah...., and THERE is NOT warranty that the VALVE-IN-VALVE (TAVI) will WORK in ALL cases, as it is a VALVE inside another valve....., and a lot happens when u place something inside your body

I did worry about possible noises, NO bother what so ever;

"for me", the hard reality of the situation was this: I understand re-current revenues of Big Pharma, and that IF i was 70 tissue would last more
than my left time around here, so why not,

But, as people age, i have known many people with no VALVES in need for Warfarin to prevent strokes, afib, etc; not uncommon,

Also, i do take a pill every day, i test INR every 10 days at home , 10 days works for me at the moment.

Most important thing is this: My peace of mind comes from knowing that the Mechanical Valve inside me
will TICK even when i am in the other world, no need to change because of a "Valve Failure"

I sleep with peace of mind, and happy i dont have to wonder, what new virus will come to us from other country
in the future.....

peace of mind..
 

jlcsn2015

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Sep 21, 2015
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Toronto
Great post


Interesting schedule, I'd sorta get confused, so just take my test every Saturday morning. How do you set reminders for that?
Hi, Glad you liked my posting, "YOUR" postings back in 2015 helped me a lot to think with clarity, thank you.

Reminders ?, I use one of those plastic boxes with 2 weeks slots, i do a test, fill the box with 10 days of
warfarin+81mg asa; when i come to EMPTY Slot, it means is TESTING DAY,

So far it works.
 

pellicle

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Queensland, OzTrayLeeYa
10 days of
ahh ... a 10 day pill box ... haven't seen one of them ... mine's just Sun > Sat

do the slots in the pill box have the day written on them? If they don't you've just forgone an important part of the process; the visual inspection

hey, its Tuesday and Monday's container is untouched ... damn I forgot to take it
 
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Chuck C

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Dec 5, 2020
Messages
481
Day 20 of recovery; First sneeze and getting smashed.

Ok, the "smashed" comment was a bit click baity, but I did do some moderately heavy drinking last night and have feedback on how it affected my INR. One of the things I like to do a few times per month is to watch the fights and toss down a few beers. Yesterday it had been 5 weeks since doing this and one of my friends was fighting in the UFC, so, I decided to have a little fun. Over the course of 5 hours I had 8 beers- but they were actually pints, so that is 12 beers. Yet, they were 4% light beers, so that is equivalent to 10 standard 5% beers. May seem like a lot, but over the course of 5 hours it is not nearly enough to get me drunk or put me in a situation where I believe I might fall down and hit my head.

I have my home Coaguchek kit now, and tested my INR after getting home at 10pm. 2.6. My previous reading was 2.8 two days earlier. I took my 3mg dose, later than I typically do. In the morning I tested at 2.9. My INR range is 2.5 to 3.5, so I am right where I want to be. At this point it would appear that I can safely drink a significant amount of beer without any significant movement in my INR- Yeah!

First sneeze today since OHS. A little bit of sternal pain, but very tolerable. I believe that my sternum has healed enough to where sneezing has minimal impact.

Reminds me of a story from the hospital. UCLA is a little bit over the top with Covid testing. It is a pain in the ass, but on the other hand, I'm glad that the hospital is a very Covid safe zone. I had to drive 5 hours round trip to get Covid tested at UCLA on March 17, two days before my March 19 angiogram. Then, because you need clearance 24-48 hours before any procedure, I had to drive up again the very next day on March 20, 5 more hours of driving, to get tested and cleared for my March 22 surgery. Both times they were a bit abrasive with the swab and it caused me to sneeze.

Day 5 in the hospital and I get a visit from a medical assistant who is there to test me for Covid- apparently it is their policy to test all those hospitalized every 5 days in the hospital. This is over the top, but it is their policy, so what can you do. But, I did say this to her before she gave me the test:

Me: " You realize that I just had open heart surgery 5 days ago, and one of the most painful things that people report in recovery is sneezing? I know that you have to do your job, but if you cause me to sneeze I am going to be very pissed off"

She then proceeded with what was by far the most gentle nasal swab test that I have had to date. I did not sneeze and was grateful. :)

Inspired by how much fun Pellicle seems to have on his electric scooter, when I went to Costco today they had them on sale and I decided to reward myself for getting through the surgery. It is a blast!
 

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jlcsn2015

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Sep 21, 2015
Messages
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Location
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ahh ... a 10 day pill box ... haven't seen one of them ... mine's just Sun > Sat

do the slots in the pill box have the day written on them? If they don't you've just forgone an important part of the process; the visual inspection

hey, its Tuesday and Monday's container is untouched ... damn I forgot to take it
No, same , blue side sunday-saturday, pink side same,
just have to count, 1,2,3,4,5,6,7,8,9,10--- empty => TEST !
I only fill 10 slots, not possible confusion.

:)
 

BillDaThrill

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Day 20 of recovery; First sneeze and getting smashed.

Ok, the "smashed" comment was a bit click baity, but I did do some moderately heavy drinking last night and have feedback on how it affected my INR. One of the things I like to do a few times per month is to watch the fights and toss down a few beers. Yesterday it had been 5 weeks since doing this and one of my friends was fighting in the UFC, so, I decided to have a little fun. Over the course of 5 hours I had 8 beers- but they were actually pints, so that is 12 beers. Yet, they were 4% light beers, so that is equivalent to 10 standard 5% beers. May seem like a lot, but over the course of 5 hours it is not nearly enough to get me drunk or put me in a situation where I believe I might fall down and hit my head.

I have my home Coaguchek kit now, and tested my INR after getting home at 10pm. 2.6. My previous reading was 2.8 two days earlier. I took my 3mg dose, later than I typically do. In the morning I tested at 2.9. My INR range is 2.5 to 3.5, so I am right where I want to be. At this point it would appear that I can safely drink a significant amount of beer without any significant movement in my INR- Yeah!

First sneeze today since OHS. A little bit of sternal pain, but very tolerable. I believe that my sternum has healed enough to where sneezing has minimal impact.

Reminds me of a story from the hospital. UCLA is a little bit over the top with Covid testing. It is a pain in the ass, but on the other hand, I'm glad that the hospital is a very Covid safe zone. I had to drive 5 hours round trip to get Covid tested at UCLA on March 17, two days before my March 19 angiogram. Then, because you need clearance 24-48 hours before any procedure, I had to drive up again the very next day on March 20, 5 more hours of driving, to get tested and cleared for my March 22 surgery. Both times they were a bit abrasive with the swab and it caused me to sneeze.

Day 5 in the hospital and I get a visit from a medical assistant who is there to test me for Covid- apparently it is their policy to test all those hospitalized every 5 days in the hospital. This is over the top, but it is their policy, so what can you do. But, I did say this to her before she gave me the test:

Me: " You realize that I just had open heart surgery 5 days ago, and one of the most painful things that people report in recovery is sneezing? I know that you have to do your job, but if you cause me to sneeze I am going to be very pissed off"

She then proceeded with what was by far the most gentle nasal swab test that I have had to date. I did not sneeze and was grateful. :)

Inspired by how much fun Pellicle seems to have on his electric scooter, when I went to Costco today they had them on sale and I decided to reward myself for getting through the surgery. It is a blast!
Beers and a new scooter - yeah, I think you surely have reason to celebrate!!! Really appreciate the details on the binge and the minimal effect on the INR. Was one thing I was concerned about. I can certainly go without the spinach (am purely a meat & potatoes guy) but, as a Mets fan, I will need several beers to get thru the season! Please keep us posted on your recovery. I am less than 2 months out from surgery and your posts are really helpful.
 

Chuck C

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Dec 5, 2020
Messages
481
I can certainly go without the spinach (am purely a meat & potatoes guy) but, as a Mets fan, I will need several beers to get thru the season!
🤣
I believe that you will do fine. The feedback from others on the forum, going back a couple of decades, is that they can generally drink what they want with little to no impact. A very few exceptions, as some do not process alcohol normally-something like 1% to 2% of the population.

Thinking about how the medical community instills this myth about alcohol into the warfarin useres, the movie The Giver comes to mind.

The Chief, played by Meryl Street: "When people have the freedom to choose, they choose wrong, every single time."

To me, she represents the medical community and the warfarin guidelines. Better that they take away all freedom, so that we don't choose wrong and make mistakes.

In The Giver, people are taught that they must never cross the city boundary- terrible things will happen if they do. Yet, it is a place where there is color and emotion, contrasting with the black and white of the city inside the boundary. To me, this boundary represents the imaginary line of drinking. You like suffering through the Met's seasons and having a few beers, and I like watching the UFC as I down a few. Not the only source of color in our lives, but a source of color and emotion and something that we would not choose to give up.

In the movie, crossing the forbidden boundary is what ultimately sets them all free- kind of like when you have those first 3 or 4 beers and realize that you did not bleed to death and can live your life very much the way you did before warfarin. I know that I felt set free when I crossed that line:

 

DaveLee

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Joined
Mar 29, 2021
Messages
3
My first post here, howdy ALL and nothing but the best for you :)

My name is Dave (70 years old) and I had my valve replaced on 9-23-2008 before the relationship of valve and artery was known, so it was never checked. The most pain I have very felt was using that plastic breathing thing. I was at the point that I would not have my chest cracked open again EVER. Then on 1-13-2015 I had to have a pacemaker added to the stuff already in my chest. Damage caused to heart from the last minute valve replacement :(

For what its worth, I had no symptoms at all. It was found when I went in for a physical and they did a ultrasound check. To keep my story short I was on the OR table a week later. The week before my ultra sound I was out water skiing and was planning on the same the next weekend. The cardiologist told me they would of called it a heart attack. The surgeon told me after a 6 hr. operation that the valve was opening the size of the head of a pin. One more small Item, on my mothers side of the family in the 40 years leading to my operation, 3-4 members of her family died from this, 2-3 male and 1 female(26 years old) no symptoms, they just died.

There were a lot of family members looking to find the cause but the ones you would think would know did not. The best anyone came up with was marfans .

I had one very interesting experience with the pain drug Oxycodone after the Vicodin that I had a very bad reaction to. After somewhere around 20 days after I came home my pain was minor and I was taking one pill at bedtime and when the pain came back at about 4am I would take another one. One night I woke up and reached for the Oxycodone. Had one pill in my hand and reached for the water when it stuck me I was NOT in pain but my body wanted the pill. I did not take one that night or ever again. The next mourning I gave the pills to my wife and ask her hide them. I may have the drug names wrong its been 13 years :)

Dave
 

Chuck C

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Messages
481
Hi Dave,
Welcome. I found this forum in December of 2020, and it was critical for me in terms of mentally preparing for my surgery and making science based decisions on valve choice.

One more small Item, on my mothers side of the family in the 40 years leading to my operation, 3-4 members of her family died from this, 2-3 male and 1 female(26 years old) no symptoms, they just died.
There were a lot of family members looking to find the cause but the ones you would think would know did not. The best anyone came up with was marfans .
So, if I am understanding you correctly, 3-4 members on your mom's side died from aortic stenosis?
One obvious suspect would be bicuspid aortic valve, as there is a genetic link, but if they were guessing Marfans, I suspect that bicuspid was ruled out.
Has your family had their Lp(a) levels checked? If there are a high number of members on one side of the family getting aortic stenosis and it is not bicuspid, the first thing I would suspect would be Lp(a).

I would suggest reading the study below and having Lp(a) checked at the next check up for your family. It is a relatively cheap test and one that all should get at least once in their lifetime. Since 2019 the European medical guidelines have recommended universal testing for Lp(a), but in the US we are several years behind Europe in terms of Lp(a) awareness in the medical community.

" One gene locus associated with Lp(a) levels, SNP rs 10455872, is also strongly associated with calcific aortic valve stenosis in several racial groups.5,6 This association of elevated Lp(a) levels and calcific AS appears to be mediated via the oxidized phospholipids and apo B components of Lp(a). "

.
 

newarrior

I have mild moderate Aortic Stenosis live Bangkok
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Hi Dave,
Welcome. I found this forum in December of 2020, and it was critical for me in terms of mentally preparing for my surgery and making science based decisions on valve choice.


So, if I am understanding you correctly, 3-4 members on your mom's side died from aortic stenosis?
One obvious suspect would be bicuspid aortic valve, as there is a genetic link, but if they were guessing Marfans, I suspect that bicuspid was ruled out.
Has your family had their Lp(a) levels checked? If there are a high number of members on one side of the family getting aortic stenosis and it is not bicuspid, the first thing I would suspect would be Lp(a).

I would suggest reading the study below and having Lp(a) checked at the next check up for your family. It is a relatively cheap test and one that all should get at least once in their lifetime. Since 2019 the European medical guidelines have recommended universal testing for Lp(a), but in the US we are several years behind Europe in terms of Lp(a) awareness in the medical community.

" One gene locus associated with Lp(a) levels, SNP rs 10455872, is also strongly associated with calcific aortic valve stenosis in several racial groups.5,6 This association of elevated Lp(a) levels and calcific AS appears to be mediated via the oxidized phospholipids and apo B components of Lp(a). "

.
Great research as usual thank you. Now if we could only get a cure for lipoprotein
 

Chuck C

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Dec 5, 2020
Messages
481
Day 28 of recovery. Fainting and rib pain

Up until about the three week point, my recovery had been pretty linear. I felt significantly better each day in the hospital and continued to feel better each day for a couple weeks after coming home. I stopped all the pain killers including Tylenol.

Then at some point, maybe day 19 or 20, although I was not feeling any sternal pain, I started to feel new rib pain. It was pretty bad at times and hurt if I took deep breaths. I was able to pinpoint the source of the pain, coming from between my ribs on the side and in the back. Mostly it was tolerable but it could be pretty painful in the morning or if I got up to use the restroom at night. One night when I got up to use the restroom, the pain was especially sharp and as I made my way to the bathroom I took shallow breaths to avoid the sharp pain, not realizing that i was hyperventilating. Before I made it to the restroom I realized that I was about to faint. I was able to make it to the couch just before going out- laid out and broke into a heavy sweat. It worried me a little and I wondered if I had just had a heart attack. Research removed this concern, as it turns out breaking out in the sweat is common when fainting or near fainting due to vasodilation.

The rib pain went on for several days, some days feeling worse and other days feeling better. I did some research on the topic and it turns out rib injury is common after sternotomy and presumably after mini sternotomy, which was the procedure which I had. I don't believe I had a fracture, but my hypothesis is that there was some minor damage to the cartilage between my ribs. Game changer for me was when I got out my old Thermalon heating pad. You heat it in the microwave for a couple minutes and it provides moist heat. It did wonders. I also went back to taking Tylenol when needed.
For anyone interested, here is the type of pad I used: ThermalOn™ Moist Heat Neck Wrap | Bed Bath & Beyond

What seemed a little strange was that this new pain came on almost 3 weeks after surgery. I suspect it was there all along, but that the pain killers masked it.

Other than walking, I had neglected my therapy exercises- somehow I missed them in the binder they sent me home with. About 6 days ago I came across them and started doing them religiously. The rib pain got better to the point where it has been almost totally gone the last 3 days. I am not sure if it was the exercises that helped or just that it self resolved in time.

Today when I woke up I felt very normal. I really have to be careful now to constantly remind myself that I am still in recovery. I have been tightly obeying the rule not to lift anything over 10 pounds. I just hope that my wife does not ask me to open a jar for her. I would need to decline assisting and, as a man, this is one of those tasks that validates our purpose, so it will be extra difficult emotionally for me 🤣
 
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newarrior

I have mild moderate Aortic Stenosis live Bangkok
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Glad you made it to the couch, that you realized sweating was a sign of fainting not a heart attack and that tylenol and the pad helped....I will have to fly 100% solo post op unless I hire someone so your situation scares me...I've lived alone the last 21 years...
 

tezza

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Joined
Nov 4, 2020
Messages
65
Day 28 of recovery. Fainting and rib pain

Up until about the three week point, my recovery had been pretty linear. I felt significantly better each day in the hospital and continued to feel better each day for a couple weeks after coming home. I stopped all the pain killers including Tylenol.

Then at some point, maybe day 19 or 20, although I was not feeling any sternal pain, I started to feel new rib pain. It was pretty bad at times and hurt if I took deep breaths. I was able to pinpoint the source of the pain, coming from between my ribs on the side and in the back. Mostly it was tolerable but it could be pretty painful in the morning or if I got up to use the restroom at night. One night when I got up to use the restroom, the pain was especially sharp and as I made my way to the bathroom I took shallow breaths to avoid the sharp pain, not realizing that i was hyperventilating. Before I made it to the restroom I realized that I was about to faint. I was able to make it to the couch just before going out- laid out and broke into a heavy sweat. It worried me a little and I wondered if I had just had a heart attack. Research removed this concern, as it turns out breaking out in the sweat is common when fainting or near fainting due to vasodilation.

The rib pain went on for several days, some days feeling worse and other days feeling better. I did some research on the topic and it turns out rib injury is common after sternotomy and presumably after mini sternotomy, which was the procedure which I had. I don't believe I had a fracture, but my hypothesis is that there was some minor damage to the cartilage between my ribs. Game changer for me was when I got out my old Thermalon heating pad. You heat it in the microwave for a couple minutes and it provides moist heat. It did wonders. I also went back to taking Tylenol when needed.
For anyone interested, here is the type of pad I used: ThermalOn™ Moist Heat Neck Wrap | Bed Bath & Beyond

What seemed a little strange was that this new pain came on almost 3 weeks after surgery. I suspect it was there all along, but that the pain killers masked it.

Other than walking, I had neglected my therapy exercises- somehow I missed them in the binder they sent me home with. About 6 days ago I came across them and started doing them religiously. The rib pain got better to the point where it has been almost totally gone the last 3 days. I am not sure if it was the exercises that helped or just that it self resolved in time.

Today when I woke up I felt very normal. I really have to be careful now to constantly remind myself that I am still in recovery. I have been tightly obeying the rule not to lift anything over 10 pounds. I just hope that my wife does not ask me to open a jar for her. I would need to decline assisting and, as a man, this is one of those tasks that validates our purpose, so it will be extra difficult emotionally for me 🤣
Great to hear of the rapid recovery of the rib pain with doing the therapy exercises. I am curious as to which exercises you have been doing. I have been given very little in the way of exercises, other than side bends, rolling the shoulders and raising the arms vertically and of course, walking. Are there some other exercises I could add that you have found helpful? I have also added in neck rotation, flexion/extension, as well as some squats and calf raises.
 

Chuck C

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Dec 5, 2020
Messages
481
Great to hear of the rapid recovery of the rib pain with doing the therapy exercises. I am curious as to which exercises you have been doing. I have been given very little in the way of exercises, other than side bends, rolling the shoulders and raising the arms vertically and of course, walking. Are there some other exercises I could add that you have found helpful? I have also added in neck rotation, flexion/extension, as well as some squats and calf raises.
Hi.
It sounds like you are doing most of the exercises on the list that they gave me. 1) shoulder rolls 2) side bends 3) trunk twist 4) 1/2 squats- I do a lot of these for leg and core strength 5) calf raises they also have me do 6) side kicks - lifting each leg as far as I can to the side 20x each and 7) shoulder retractions- inhale as you bring your elbows back and exhale as you bring the elbows forward. 10x

I think that they help work out some of the pains and get things moving and lubricated again.
 
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