Hoping to meet with Dr. Pettersson

[chaconne]

ocunurse,

I just had an On-X aorta valve installed a little less that 3 weeks ago. It seems to be functioning well and it is relatively quiet. As far as it being better than others like ATS and St. Jude. I don't know. I don't know that there is any conclusive proof that one is better than the others at this point. As an engineer, I chose the On-X because it had features that made sense to me and may end up proving to be an advantage. However, it's possible that all of these "improvements" are minor compared to all the other parameters and variables that are involved in the function of the heart. I like having an On-X because of the "cool" factor, but I think any of the others I mentioned are good and will serve you well.

 

[Lynlw]

Hi Ocunurse, I'm around 3 weeks now with my on-x valve. I'm impressed with how quiet it is, most times I never hear it at all. My surgeon put in the largest size available for myself, I'm 56 and hoping this valve will carry me till the end . I'll have more questions for him when I meet up with him this coming Tuesday, it will be our first post op office meeting.
I also wanted to be part of the study, it does come with some added benefits including echo scans, paid drugs and home blood monitoring. Everyone has to take the warfarin for the first 3 months . I found it to be pretty attractive myself with the added medical test and free drugs. I'm not sure of the negative consequences and would not even know how to get info on this. It sounds like you made a good choice in surgeons now from what I read, I would highly recommend more time off before the operation.
My bosses wanted me out when they heard I was having OHS, I kept coming in and doing my job, then on the second week as the date got closer I realized I was not focusing on my job as much , so decided to exit until I got fixed. We were all happier with my decision, I felt relieved to be able to have time off before surgery. I ran around and fixed all the little things around our house that needed attention.
I really feel you will be happy with the on-x choice, lets just all pray this will be a valve for life. :smile2:

As far as i know the "negative", would be increasing the risks of having a stroke compared keeping at the current reccomended INR. I'm not sure of your or anyones insurance or plans, but would they already pay for any echos, meds( I believe gneric coum is on the 4 dollars a month list at walmrt and othersanyway?)) or home testing? That this would save you alot of money? IF you do end up with a stroke, do they help with THOSE cost? That would be my questions, especially since the early results http://www.valvereplacement.org/for...inical-study-interim-results&highlight=proact showd the same "composite thromboembolism and hemorragic rates" OR Total number of "events" between arms but when you look at the breaks down more of the lower INR had TEs and normal range had more bleeds, of course they say not to draw conclusions, but IF it were my body/brain at risk, Im not sure i couldn't help but to draw conclusions or at least think hard before agree to take part, most likely I wouldn't since people rely on me right now, I would definately reccomend family members not to take part, but it would be up to them

"I spoke with someone at On-X. They report composite values because there is not yet enough data to compare bleeding and thromboembolism separately between the study and control groups (she said if you look at the numbers individually, though not significant, you will see more TE for the study group (low INR) and more "bleed" for the control group (normal INR); but cautioned against drawing conclusions."

Nothing against your medical team, but I find it interesting they didnt make VERY clear, the risk and give you alot of information so you could make an informed consents to take part in a trial

 

[bradvo]

Hi Lyn, first off I would like to say thanks for the read. I guess with any study there is some controversy , or pros and cons. My medical team did not point out the negatives as much as the positives of this study group. I guess I'm wiling to give them the benifit of doubt that this is not a bad thing.

My life style is certainly not wild and crazy with extreme sports that could create bleeding issues, but it is neither one that is a park walker or couch patato either.

I am an avid boater and take excursions out for 2 weeks at times that do put me in rough waters, rough terrains and what we call Boat bruises.
I do enjoy a good hike which with this new valve may now enable me to partake again.
I'm looking for the best normal I can get before the valve and mantatory warfarin usage.
Still learning, I'm only 3 weeks post op and have not been a confirmed candidate for sure. I hope I am tho, would really like to participate.

 

[ocunurse]

Thanks Lyn for the information,

I decided not to take part in the study. The nurse wasn't very convincing in regards to the stroke risk. I just had a gut feeling that I should not do the research study. It's a 50-50 shot which group you would be put into, and I don't want to add stress to my life by having to drive 200 miles for check-ups, which according to the study nurse are not allowed to be reviewed by other doctors. So I'll go on coumadin. I would love to help, but this time around, I'm focusing on myself and reducing my psychological stress. I spoke with my cardiologist and told him how symptomatic I had become. He has cleared me from work until my surgery. He also mentioned that he using AMS labs to monitor INRs and that the AMS lab has cardios on staff who dose your coumadin. Dr. Hanzel said its a national thing. I had not heard of them and can't find them when I do a google search. Perhaps, I misheard him. Oh well, there will be plenty of time to figure that out. I got two weeks!! Phew....I just recently bought a kindle fire, so I plan on doing lots of reading!

 

[Lynlw]

Thanks Lyn for the information,

I decided not to take part in the study. The nurse wasn't very convincing in regards to the stroke risk. I just had a gut feeling that I should not do the research study. It's a 50-50 shot which group you would be put into, and I don't want to add stress to my life by having to drive 200 miles for check-ups, which according to the study nurse are not allowed to be reviewed by other doctors. So I'll go on coumadin. I would love to help, but this time around, I'm focusing on myself and reducing my psychological stress. I spoke with my cardiologist and told him how symptomatic I had become. He has cleared me from work until my surgery. He also mentioned that he using AMS labs to monitor INRs and that the AMS lab has cardios on staff who dose your coumadin. Dr. Hanzel said its a national thing. I had not heard of them and can't find them when I do a google search. Perhaps, I misheard him. Oh well, there will be plenty of time to figure that out. I got two weeks!! Phew....I just recently bought a kindle fire, so I plan on doing lots of reading!

I'm glad you weren't botherred that I offered my thoughts with out you asking and gld you thought about it and asked alot of good questions. I personally think you made a good choice for you, since you are young and hoping to start a family soon etc, it makes sense not to increase the odds of having a stroke which could be devestating.

my soapbox..sorry but Sometimes I think medical staff or companies who can make alot of money from certain research don't really make sure patients, whose bodies are the ones that could be effected, really think about what the downside COULD be. Even if the odds are still low of a bad outcome, somtimes from what I read around here it doesn't seem like some places really are doing "informed consent" and just gloss over the bad side, while making the plus seem to good to not take part... Especially in taking part in a trial like this, that the early results so far DID show an increased stroke for the people with lower INR than what is reccomend now, I wonder IF they even mention that to the patients, my guess is not all do. I'm sorry but using "free meds or free testing, that for most people with insurance they already wouldnt pay that much to begin with, IF anything seems more like an infomercial than a serious discusion of benefits and risks, for a trial that if you dont take part in it and just do what is normally done you live a pretty good life, with reatively low risks.
but Im not in the room with them during the discussions so I could be wrong, I actually hope I am.

 

[ocunurse]

Been an interesting road since when I started feeling symptoms in September, but the time is now. My dad is flying into Detroit tomorrow. Get to spend a day with him, then we are headed to cleveland along with my wife and her parents. My inlaws are staying through the rough days, Monday and tuesday. I will never forget that my dad only left my bed for two hours to shower during my last OHS. A wonderful man. Well, everything is in order. According to the cheesy prop videos and nurse, I should be somewhat lucid by Monday night. I'm bringing my tablet and my phone, so you all will be hearing from me again soon.

Trey

 

[ottagal]

Positive vibes and prayers coming your way, Trey! We will look forward to an update from 'the other side'. :thumbup:

 

[Lynlw]

Enjoy the day with your dad. I'm looking forward to reading your updates

 

[ocunurse]

I will! We bought tickets for him and the I laws to see TransSiberian orchestra's Christmas. They do the Christmas rock show. Should put me in the right mood! Lol

 

[markp66]

I highly doubt the ON-X valve will ever be completely free of warfarin or similar anticoagulants. Thrombosis will always be a problem no matter how good a vlave is. However, the main advantage is the reduced anticoagulation. Most bleeding events happen when a patient is out of range, especially over 3. If the ON-X can have a target INR of 1.5-2.5 then this will reduce the chances. I never let my INR (at least try not to) go over 2.5 anyway and so far it seems very easy to control (bring on the antibiotics..../ illnesses etc!)
All mech valves are generally reported to last 200 years, low reop rates and low INR- 2-3.
I like the on-x valve because it has many potential beneficial features. I think it is obvious that it isn't a bad valve. The ATS seems to be another great valve and Carbomedics, St Judes are also just as excellent in long term follow up. I'd like to think the ON-X valve was superior because it is newer and hopefully more technologically advanced. Hard to say though without full randomised trials.

 

[John & Joann]

Our very best to you. You are in the hands of the best in the business.

God Bless!

 

[ocunurse]

Out of surgery, third daypostop, fourth day here. I'm on the step down floor, which I'm thrilled about. The ICU could use some constructive feedback into organzung patient care/ disappear for two hours while they talk about getting drunk at the nurses station right next to you and are unable to identify a faulty chest tube. Then again I've had some good ones, but you really have to advicate for yourself. My two remaining chest tubes which were both leaking needed a chest ray to verify. Without reminding them 5 times, then it would have never been done.

I haven't been awake enough to speak to Dr. P, but what the nurses are telling me, they replaced aortic valve, root, & arch in about four hours. Impressive, thanks Dr. P. The on call surgeon is great too.

 

[Boston Tiger]

Glad to hear that you came through well and are now in the recovery mode. Keep getting better!

 

[John & Joann]

Great news!!!!! We had a fairly good experience with the intensive care nursing. It is SO much better when you are placed in the step down area. You will be walking A LOT very soon.!!!!!!

 

[ottagal]

So glad to get your news. Sorry to hear about the faulty chest tube.
Wishing you a smooth and bump recovery moving forward. Remember take things one day at a time.

 

[esvaja]

You know, I thought the conversation i overheard during my post-op had something to do with partying - I thought "how inappropriate". I had surgery w/Dr P too, & I thought it was the fentonyl talking in the ICU. I know that a patient crashed twice in the ICU while I was there. How bizarre! Other than the bad ICU experience, everything else went fine.
Of couse there was the pericardial effusion 2 weeks after discharge.
esvaja