3rd OHS over and looking for advice.

[mitchhollar]

Hey Guys,

Thanks again for all the great support and advice found on this site. Well I went into surgery thinking this would be a simple ascending aorta repair as I had an anuerysm. Went into surgery at 6:30 am on the 24th. By eleven my family was told they where wrapping it up. Well then no one came back to tell them anything else for 2 hours. Ended up my pulmonic valve in the aortic spot from my Ross Procedure was pretty bad after putting me back to together, almost shredding in spots. So my surgeon went back in and put a mechanical St. Jude in and did some work on my Aortic Root as well. All in all it was a 12 hour surgery again, same as my Ross in 96'. Woke up at about 12:30 am and when I come too I come too. I know exactly what is going on. Intubated is not the most fun I have ever had but I had done it 2 times before so I knew what to expect. The problem was I had to breathe on my own with the tube in for a 1/2 hour before they would remove the tube. Not bad I knew that. After a 1/2 hour I felt pretty good and was ready. My ICU nurse had to verify it with the anesth. before they could pull it out. Well he didn't answer his pager for another 1/2 hour and then another one. She finally ended up calling someone else and I got it out. Ended up throwing up as soon as they pulled it out. I would have been fine if the anesth. would have answered his pager, I never throw up. So just a heads up to everyone on that, make sure your anesth. will answer his pager late night?

Recovery went very well with a one exception, A-FIB of course. I went into A-FIB the second day post op and got a bulas of Amiodarone. I converted back within two hours. Not to bad. I did have it after that but only for maybe a 1/2 hour at a time so I was pretty happy with that. Still having it at home but not terrible. I just need to keep telling myself my body just went through a huge ordeal for the 3rd time and it will stop eventually, Right?
One more thing how do all you St. Jude guys deal w/ the clicking in your ears? I am very skinny and my heart is really working well now, better than it ever has so it is extremely loud in my own head. No one else can hear it but I sure can. Any advice would be helpfull. Thanks again guys you are all great in my mind and all survivors, never stop fighting.

 

[geebee]

One more thing how do all you St. Jude guys deal w/ the clicking in your ears? I am very skinny and my heart is really working well now, better than it ever has so it is extremely loud in my own head. No one else can hear it but I sure can. Any advice would be helpfull. Thanks again guys you are all great in my mind and all survivors, never stop fighting.

Gain weight. - just kidding. Glad you got through all this with not too much hassle. You should notice the ticking less and less as time goes on. I am not sure if it is because we get used to the sound or if it is because tissue starts to grow around the ring (or both). I have to try really hard to hear my valve now but, interestingly enough, others do hear it in a quiet room. Does it bother you all the time or just when you are trying to sleep?

 

[Tom F.]

Good grief, third time around! Well hang in there, you have been through enough for one person. Hopefully this will be the last one.

 

[AgilityDog]

The ticking will soften over the next few months. I felt like Cap'n Hook's crocodile for the first few months! I rarely hear it any more, and I'm thin, too.
Glad you came through ok! Sorry you didn't get to keep the other valve, though.

 

[njean]

So glad to hear that you are doing so well after your 3rd OHS! I pray that this is the LAST surgery you ever have to endure!

Out of curiousity.....since this was your 3rd, did you have any scar tissue that your surgeon was worried about & put you in a higher risk?

Reason I ask, is because I too have had 3 OHS & the possibility of a 4th OHS looms over my head. But because of the pannus growth in & around my valve, the surgeon, & the doctors are very reluctant to perform any further surgery due to the high risks involved, and so I'm kind of in limbo at the time.

Stay well & please take it easy on yourself!

 

[Mary]

Glad you're home, Mitch, and I hope you are through will all surgeries. You've had enough for two people!

 

[mitchhollar]

So glad to hear that you are doing so well after your 3rd OHS! I pray that this is the LAST surgery you ever have to endure!

Out of curiousity.....since this was your 3rd, did you have any scar tissue that your surgeon was worried about & put you in a higher risk?

Reason I ask, is because I too have had 3 OHS & the possibility of a 4th OHS looms over my head. But because of the pannus growth in & around my valve, the surgeon, & the doctors are very reluctant to perform any further surgery due to the high risks involved, and so I'm kind of in limbo at the time.

Stay well & please take it easy on yourself!

Yes they where worried about scar tissue. But this time it was actually less than my last open heart surgery. My Ross Procedure took nearly 13 hours due in a large part to scar tissue from my first surgery in 1988. Wow number four huh, I am so sorry to hear that. You will make it though. I will keep you in my thoughts and prayers for you and the Dr.'s to make the right decision. I may be in for a fourth myself someday but for now my fingers are crossed.

 

[mitchhollar]

Gain weight. - just kidding. Glad you got through all this with not too much hassle. You should notice the ticking less and less as time goes on. I am not sure if it is because we get used to the sound or if it is because tissue starts to grow around the ring (or both). I have to try really hard to hear my valve now but, interestingly enough, others do hear it in a quiet room. Does it bother you all the time or just when you are trying to sleep?

Pretty much all the time right now. Believe me I am not complaining, it is there for a good reason. You guys have given me a lot of hope that things will lesson over time though. Thanks a ton.

 

[sheridan07]

Good luck with your reovery! All I can say is try to think about something else when you hear the ticking. My wife can hear my ticking at night. I Think my ticking is cool. My 6,4, and 3 year old boys love hearing my "clock" as they put it. Good luck

 

[Ross]

Believe me, they'll most likely screw up your INR so come see us in anticoag when you need help. I have yet to see a place that knows what they're doing.

The ticking will become unnoticeable soon. Don't worry about it. I know when I first got mine I though, "man I can't live like this" but it went away.

 

[ALCapshaw2]

....I too have had 3 OHS & the possibility of a 4th OHS looms over my head. But because of the pannus growth in & around my valve, the surgeon, & the doctors are very reluctant to perform any further surgery due to the high risks involved, and so I'm kind of in limbo at the time.
QUOTE]

NormaJean -

Are you aware that the On-X valves have a Barrier to Retard / Prevent Pannus Growth from impinging the leaflets of their valves? You may want to discuss this option with your Surgeon(s). (and/or call On-X for more information on how their barrier works / performs)

'AL Capshaw'

 

[Freddie]

Yes indeed, in most cases the ticking will fade........in time.

 

[lilteach3234]

I am newbie at all of this and ONE OHS has been enough for me. Does having one surgery just make you prone to have others? This terrifies me. I hope to God when they went in this first time they got me fixed.

Does getting a new valve make other parts of the heart go bad or what?

I have a new aortic valve, have had the bentall procedure done and have a pacemaker. I had no idea I would have to get this dang pacemaker. That surgery isn't too bad as it is a local anesthesia.

I really don't know if I'd opt for another surgery and I fear I would not make it throught it after all the complications first time around.

 

[Karlynn]

Holy smokes - enough already!!!! Recover well. You've been through the ringer.
And yes, as everyone else has said - the ticking will lessen. In the meantime - think about composing some catchy songs to go along with the tempo you're hearing. Or drive those around you nuts by talking in time with the ticking. (1 of many Stupid Valve Patient Games we can suggest!)

 

[Karlynn]

I am newbie at all of this and ONE OHS has been enough for me. Does having one surgery just make you prone to have others?

No- There are many of us that have gone a long time without issue. (Dick - 40 years!!)

I know you are freshly out with all the nitty gritty being front and center in your thoughts. This will subside and you'll eventually come to terms with the fact that you are destined to live a good life.

 

[mitchhollar]

Believe me, they'll most likely screw up your INR so come see us in anticoag when you need help. I have yet to see a place that knows what they're doing.

The ticking will become unnoticeable soon. Don't worry about it. I know when I first got mine I though, "man I can't live like this" but it went away.

Thanks for the heads up Ross. I never really reaserched this area as I thought I was still going to have my Tissue Pulmonary valve in my aortic spot. My INR was perfect at 2.0 last time we checked I go back on Thurs. to have it checked again. My problem is every food that I eat and like is on the so called danger list. I am about as close to a vegetarian as you can get w/ the ecxeption of salmon, talapia, and the occasional chicken. Blueberries/spinach/broc./lettuce and all the others are what I love. How much does food realy effect your INR? I was told to eat like I always did and go from there, is that correct? Thanks Ross!

 

[mitchhollar]

No- There are many of us that have gone a long time without issue. (Dick - 40 years!!)

I know you are freshly out with all the nitty gritty being front and center in your thoughts. This will subside and you'll eventually come to terms with the fact that you are destined to live a good life.

I totally agree with you Karlynn. Don't worry about more surgeries before hand. Everyones situations are completely different, it just ended up that some of us for whatever reason have ended up in surgery more than others. If four comes around for me I will prepare my mind and body and get ready to roll. Now since I have the ST. Jude I am very optomistic that I can actually have a normal heart for the first time in my life. I am so excited about that. I would love to know more about home testing Karlynn, could you or Ross help me out with that? Mitch

 

[Karlynn]

My problem is every food that I eat and like is on the so called danger list. I am about as close to a vegetarian as you can get w/ the ecxeption of salmon, talapia, and the occasional chicken. Blueberries/spinach/broc./lettuce and all the others are what I love. How much does food realy effect your INR? I was told to eat like I always did and go from there, is that correct? Thanks Ross!

Yup - don't worry about "no stinkin' food lists".

Dose the diet - don't diet the dose.

 

[Karlynn]

What can we answer for you? What types of monitors, costs, how to get it?

You will need a prescription from your doctor for home testing for most companies and for all insurance claims. We have a few members who have skipped that route for whatever reason. But that is the usual way you go about it.

QAS (a sponsor of this site) will do all the leg work for you as far as contacting your insurance company. And they'll let you know what you need from your doctor. If your insurance won't cover the cost - companies will usually give discounted prices. My insurance covered mine - so maybe others who didn't have their covered could weigh in on what they did.

I would recommend that you start keeping track of your INR's and the corresponding doses now. For instance - Today's INR was 2.0 and the weekly dose leading up to it was 30/week. This way - you will begin to learn how your body responds to changes. And if you have any questions for us - you'll be able to tell us quickly what your recent history was.

 

[Ross]

Thanks for the heads up Ross. I never really reaserched this area as I thought I was still going to have my Tissue Pulmonary valve in my aortic spot. My INR was perfect at 2.0 last time we checked I go back on Thurs. to have it checked again. My problem is every food that I eat and like is on the so called danger list. I am about as close to a vegetarian as you can get w/ the ecxeption of salmon, talapia, and the occasional chicken. Blueberries/spinach/broc./lettuce and all the others are what I love. How much does food realy effect your INR? I was told to eat like I always did and go from there, is that correct? Thanks Ross!

...and so it begins. Already their giving you wrong information and your INR really should be higher, your just inside the door and that's all. Won't take much to put you too low.

DO NOT CHANGE your diet one bit. You eat like you always have in the past and that includes your veggies. Make them dose the diet you eat, don't diet the dose of the drug. Consistency in INR means no binging on something. In other words, don't sit down with a bag of spinich and chow down unless that's something you normally do all the time. Diet plays a very small roll in INR, but Vegetarians are a bit harder to control because of your wide variety of Vit K sources. Not impossible, just harder.