Just a simple 1 year now

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Keithl

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Apr 20, 2019
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337
Well it has been 1 year ago that I received my On-X valve and aorta graft at Cleveland Clinic. I was diagnosed in 2007 and checked annually. Last year the aneurysm beat the valve to the punch by getting to be 5.1. Since I had plenty of time to plan I was 99% sure I was going mechanical and if I could swing it financially would go to Cleveland. When the time came I planned it all out and the logistics and finances allowed me to to to Cleveland. They had a great process for out of state/county people and made it rather simple. We arrived the Sunday before the surgery so that we could get all their pre-screening appointments done on Monday through Wednesday with Surgery on Thursday. Surgery first thing Thursday and I would be lying if I said I was not terrified. Last time I remember was 7:04am on the clock in the OR and that was it. Next memory was waking up with the tube in my throat and realizing I better start showing them I could breathe on my own. That portion is a big blur and my wife says I was away with the tube for about 30-35 minutes, but I recall maybe a minute or so. They rest of that day is a big blur other than extreme nausea and throwing up 3 times and hearing the code blues from other recovering patients. The next day was I wain my own room, still very nauseous, but feeling fine. Within 24 hours of surgery I was on my cell phone doing work and calling friends. My recovery went so well they were going to discharge me on Monday, but did not because my INR had not reach ed 2.0 yet. I would up being in the hospital until the following Thursday evening when my INR hit 2.0. Once I was at 2.0 it was maybe 90 minutes before I was discharged. The day after they do post hospital tests and then I am done. We flew back that Sunday.

I did everything they told me to do, from walking and not putting any pressure on my chest. They did a full sternum crack, which they told me up front and I supported. They told me to pamper my chest for a total of 6 weeks, which I did then was fine and back to my normal routine. They encouraged me to be careful with my chest for 12 weeks, again which I did. The first ~3 weeks were rough sleeping om my back propped up, but I stated to get used to it. Within n a few weeks I was on home anti-coagulation testing and everything has been remarkably fine. The surgeon had told me post surgery that my valve was worse than they thought so it was a good time for both. I can tell as my stamina especially when exercising is better, I don't huff and puff as much. I have had no issue keeping my INR in range with maybe a few times it was either a tad high (3.4) or at the bottom end of my range (2-3).

I have zero regrets about picking a mechanical valve, even after I had a GI bleed issue post a recent colonoscopy. I rarely hear the ticking any more and my wife only hears it in bed if I lay on my left side. I feel very fortunate to have had a great experience both with the hospital and staff as well as with no complications. Calculating all the expenses for going to Cleveland cost me around ~$5K (airfare, hotel, ubers/lyts) that I would not have spent if I had it in Atlanta, but it is the best $5K I have ever or will ever spend.

I feel confident that even with the frequent colonoscopies I need to do going forward that this valve will outlive me by a long shot and I am truly lucky. This forums has also been a great fine (by my wife) that helped before during and still for my experience. I read all the great stories of folks with older mechanical valves going strong after decades. I am glad to be in your company and wish us all well with safe and happy futures!
 

dick0236

Eat the elephant one bite at a time
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Joined
Feb 10, 2007
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3,026
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louisville, KY USA
Well it has been 1 year ago that I received my On-X valve and aorta graft at Cleveland Clinic. I was diagnosed in 2007 and checked annually. Last year the aneurysm beat the valve to the punch by getting to be 5.1. Since I had plenty of time to plan I was 99% sure I was going mechanical and if I could swing it financially would go to Cleveland. When the time came I planned it all out and the logistics and finances allowed me to to to Cleveland. They had a great process for out of state/county people and made it rather simple. We arrived the Sunday before the surgery so that we could get all their pre-screening appointments done on Monday through Wednesday with Surgery on Thursday. Surgery first thing Thursday and I would be lying if I said I was not terrified. Last time I remember was 7:04am on the clock in the OR and that was it. Next memory was waking up with the tube in my throat and realizing I better start showing them I could breathe on my own. That portion is a big blur and my wife says I was away with the tube for about 30-35 minutes, but I recall maybe a minute or so. They rest of that day is a big blur other than extreme nausea and throwing up 3 times and hearing the code blues from other recovering patients. The next day was I wain my own room, still very nauseous, but feeling fine. Within 24 hours of surgery I was on my cell phone doing work and calling friends. My recovery went so well they were going to discharge me on Monday, but did not because my INR had not reach ed 2.0 yet. I would up being in the hospital until the following Thursday evening when my INR hit 2.0. Once I was at 2.0 it was maybe 90 minutes before I was discharged. The day after they do post hospital tests and then I am done. We flew back that Sunday.

I did everything they told me to do, from walking and not putting any pressure on my chest. They did a full sternum crack, which they told me up front and I supported. They told me to pamper my chest for a total of 6 weeks, which I did then was fine and back to my normal routine. They encouraged me to be careful with my chest for 12 weeks, again which I did. The first ~3 weeks were rough sleeping om my back propped up, but I stated to get used to it. Within n a few weeks I was on home anti-coagulation testing and everything has been remarkably fine. The surgeon had told me post surgery that my valve was worse than they thought so it was a good time for both. I can tell as my stamina especially when exercising is better, I don't huff and puff as much. I have had no issue keeping my INR in range with maybe a few times it was either a tad high (3.4) or at the bottom end of my range (2-3).

I have zero regrets about picking a mechanical valve, even after I had a GI bleed issue post a recent colonoscopy. I rarely hear the ticking any more and my wife only hears it in bed if I lay on my left side. I feel very fortunate to have had a great experience both with the hospital and staff as well as with no complications. Calculating all the expenses for going to Cleveland cost me around ~$5K (airfare, hotel, ubers/lyts) that I would not have spent if I had it in Atlanta, but it is the best $5K I have ever or will ever spend.

I feel confident that even with the frequent colonoscopies I need to do going forward that this valve will outlive me by a long shot and I am truly lucky. This forums has also been a great fine (by my wife) that helped before during and still for my experience. I read all the great stories of folks with older mechanical valves going strong after decades. I am glad to be in your company and wish us all well with safe and happy futures!
Congratulations on #1..........there will be lots more to come :D!!
 

BillDaThrill

Member
Joined
Apr 17, 2016
Messages
6
Location
Los Alamos, NM 87544
Thank you Keithl for your story. Like you, I have spent a long time in the 'waiting room' watching my aneurysm very slowly grow (now 4.6) and my valve slowly deteriorate, wondering when my time for surgery comes. Also, like you, I plan to travel to the Cleveland Clinic to have my future surgery (live in New Mexico). Helps with my confidence hearing the positives on such an approach. What age are you? As I am now 50, if I had to pick today would go On-X or Resilia valves. Fully waffling on the mechanical vs tissue valves but leaning towards tissue as I get older. Wishing you continued success!
 

Keithl

Well-known member
Joined
Apr 20, 2019
Messages
337
Thank you Keithl for your story. Like you, I have spent a long time in the 'waiting room' watching my aneurysm very slowly grow (now 4.6) and my valve slowly deteriorate, wondering when my time for surgery comes. Also, like you, I plan to travel to the Cleveland Clinic to have my future surgery (live in New Mexico). Helps with my confidence hearing the positives on such an approach. What age are you? As I am now 50, if I had to pick today would go On-X or Resilia valves. Fully waffling on the mechanical vs tissue valves but leaning towards tissue as I get older. Wishing you continued success!
I just turned 59. I actually had my surgery the week after my 58th birthday. I had mentally prepared myself to have it by age 60 for fear of making the recovery harder, even though my doctors bragged about all the people much older that had it done. We stayed in downtown Cleveland at a Residence Inn about 10 minute drive from the Clinic. They now have a new Residence Inn a few block from the Clinic. The advantage of downtown was shopping and restaurants, the disadvantage was being across from the stadium so at times was noisy. My surgeon was amazing, Dr. Unai. Everyone at the hospital was raving about him.
 

bizinsider

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Joined
Jun 27, 2016
Messages
75
Location
San Diego, CA
Hi Keith,

Congrats. Other than the nausea, and the fact that I was in the hospital 8 days, I can relate. I'm 2 months Wednesday and can't believe how good I've felt from early on. No heart-related complications, only an annoying distraction by an incidental finding. We arrived from San Diego on a Sunday with surgery Wednesday and stayed in Cleveland a total of 10 days post surgery; stayed at the Intercontinental with the skyway connected to the hospital. My advice to anybody, post-surgery: Walk, walk, walk - walk those halls. I was surprised, while walking, to see so many people in their beds. Frankly, I hated the beds and once I was out (even if it was 1 a.m., which was the case for a few days and trust me when I say - there is NOTHING on TV at those hours) I didn't get back in...certainly not during the day. When they say the CC is a machine, it's meant in the best possible way. I was surprised engaged the nurses were. It gave me new respect for nurses from the amazing folks in the ICU to the compassionate crew in the step-down. My only complaint that I was freezing throughout when in the halls, but I think that comes with post-surgery body temperature and the opening in the back of the skimpy gown coupled with the fact that they keep the place cold to hold down bacteria. It took about a week at home before my regular body temperature rebounded. Charge on!
 

Keithl

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Joined
Apr 20, 2019
Messages
337
Hi Keith,

My advice to anybody, post-surgery: Walk, walk, walk - walk those halls. I was surprised, while walking, to see so many people in their beds.
Ditto,

I was walking all the time, most days while still in hospital 1-1.5 miles circling the halls. It was funny how when a new nurse came on shift the old nurse would tell the new one not to worry about me I was doing more than I needed to be doing. It was good because I did not have to worry about nurses coming in all the time to nag me to do certain things. Same things to the spirometer exercises, breathe often and deep, same thing they would just bypass me as they knew I was doing more than I was supposed to.
 

bizinsider

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Messages
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San Diego, CA
Keith, curious - were you in pretty good shape going into this? I was. I'm just wondering if that explains the strong recovery. I was; really wanted to make sure my core was pretty strong, and it came in handy on the night my bowels decided not to cooperate. Let's just say I was out of bed every five minutes on Night 3 w/o the help of a nurse. Well, actually at some point I had to call the nurse because nature didn't cooperate the right way! 😱 She acted as if everything was normal. (Hint: It wasn't. And this was the middle of the night, but I digress...) I feel my pre-surgery exercise made my post-surgery ability to get up and going much easier.
 

Keithl

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Joined
Apr 20, 2019
Messages
337
I was in decent health and shape, a few pounds over, but I was exercising 4x a week with 40 minutes of cardio and eating decently as well, big on Omega-3 Fish Oil, Garlic, Potassium and Co-Q10. When they did the check for clogged arteries they told me I would likely never need bypass or stents as my arteries looked clean. Seems hard to believe as until 2007 I ate horribly.
 

Protimenow

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Aug 10, 2010
Messages
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California
I was told after my first two angiograms that my arteries looked good, and that I would 'never have a heart attack.' The casrdiologist was right -- a month ago my heart rhythm went crazy - on my angio two days after admission to the hospital, I had a stent to open up an OM artery. So - no heart attack - just a crazy heart rhythm.

The rhythm issues is better, but unresolved.

I've got to start exercising - although I was given no discharge instructions by the cardiologist or electrophysiologist who I saw in the hospital....I may just give it a try...
 

bizinsider

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San Diego, CA
Promtimenow, v sorry to hear about your current rough patch. It could happen to any of us - always a possibility. Walking is great. You can start by strolling and then work into a more active walk. I do a bit over 3 miles a day, at a good pace. Start slow with a goal. You'll probably surprise yourself.

As for bypass - I ate really well, was on statins, so would have thought I would have sailed through. I ace'd the stress test, but it's only 80% accurate. With a bicuspid valve, which I thought I had, many have very clear arteries. Imagine my surprise when they told me one of mine was 80% blocked - it's one that they said would've given me angina or a heart attack, not killed me. So I said to my cardiologist, "What's the point of eating so well if I still needed a bypass? (It was a single bypass - added 7 minutes to the entire procedure.) He said, "Well, maybe you would have already had a heart attack or had more blockage." I guess that's one way of looking at it.

I did have difficult-to-control BP, regardless of the cocktail. And it was getting worse. Turns out I had a unicuspid valve, not a bicuspid. Now my BP has been surprisingly close to where it should be every time I take it (3x a day.) I'm wondering if it was b/c of the unicuspid valve, which was stenotic, to boot. Crazy thing, I had or thought I had no symptoms. Apparently my heart muscle expanded in size (they call that an "athlete's heart, though I'm no athlete) to compensate for the valve's insufficiencies. The heart apparently will now remodel its size down to a normal size.

The most notable change since surgery is that during my walks I seem to be less fatigued toward the end and capable of keeping up my pace better-than-before. The surgeon said I would have more energy; that must be what he meant. On very steep hills I used to feel some pressure, almost a dull pain, in my chest. I thought it was my valve getting ready to go. Turns out it was probably the blocked artery.

All's well that ends well!
 

Protimenow

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I'll start walking (although I do make runs through grocery stores, with a cart to overcome any dizziness). I'll probably use the treadmill, too. The hospital gave me a pulse oximeter, and I use it to get a read on my pulse rate -- I've watched it go from as low as 39 at rest, to the high 70s - even though I'm in the same position, still at rest.

Perhaps this 24 hour holter will confirm this.

I may have an ablation where they go through the septum to get to the problem areas, some time soon -- if my HMO will finally approve my electrophysiologist.

It'll certainly be in another post, but I'm wondering if anyone who reads this has had a similar ablation procedure.
 

bizinsider

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Could this qualify you for cardiac rehab? (I know, I know... there is none, but they're probably there for email/phone/virtual consults. I know they are here.) If you're dizzy and using a cart it would seem you need to be monitored by a person. Also on the pulse oximeter, make sure you're using it right (and that your finger is warm and it is seated inside the device properly.)
 

tom in MO

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...Apparently my heart muscle expanded in size (they call that an "athlete's heart, though I'm no athlete) to compensate for the valve's insufficiencies. The heart apparently will now remodel its size down to a normal size...
Your heart will shrink now that the valve has replaced and it doesn't have to work so hard. It might not shrink to "normal size" though. After 7 years my heart reduced in size but is still on the large size. Per my cardio, this is "normal" for someone with an aortic valve replacement at 55.
 

Protimenow

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Bizinsider - I assume tht your comments were made for me. Around the house, I don't use a cart of walker - there are plent of walls and doorways to use if I need a bit of a course correction.

I got a pulse oximeter yesterday, and it seems to work well -- I didn't warm my finger, but it think it was warm enough for some accurate testing. My heart rate seemed to be on its own clock - from 39 to mid-70s, with no logical reason for the jump or drop. I was wearing a holter monitor while using the oximeter. I'll see if they saw the same kind of irregularity after they review the holter results.

I don't know when I'll see the cardiologist or his PA, but I'm certainly interested in learning the results - and having a copy faxed to my electrophysiologist for his review.

I still don't know what kind of activities are allowed, and which should be avoided.
 

bizinsider

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Your heart will shrink now that the valve has replaced and it doesn't have to work so hard. It might not shrink to "normal size" though. After 7 years my heart reduced in size but is still on the large size. Per my cardio, this is "normal" for someone with an aortic valve replacement at 55.
Tom, thanks for the info. Sounds about right? Did you have a unicuspid? What I am noticing is that my BP seems much easier to control w/the new valve, though worried I'll jinx it by just saying it.
 

Protimenow

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bizinsider: If we can jinx things just by saying them, I've got a lot of things to say that I may want to jinx:

I don't have much money, but don't need more, either.
My health sucks.
I have a serious heart arrhythmia that will never be resolved.
I don't want any good jobs.
My wife is sick, but we don't care.
This pandemic will last forever.

If this jinx works like it should -- well, I won't say, because I don't want to jinx it.
 

tom in MO

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Tom, thanks for the info. Sounds about right? Did you have a unicuspid? What I am noticing is that my BP seems much easier to control w/the new valve, though worried I'll jinx it by just saying it.
I had a bicuspid with severe stenosis. Per the surgeon when it was removed it was "ready to fail."
 
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