Going in for AVR on Aug 27th- On-X Valve

[PGARG]

My Story - I'm 40 years old. No major health problems...overall very in decent shape. Had a minor fender bender and got whiplashed. After 5 days of neck pain, and much pressure from friends and family, went to see a doctor. As he's checking me out, he keeps listening to my heart and informs me that have i ever been told about a murmur. I was like, i don't even know what that is.
He goes out of the room for 15 mins and comes back and says he's talked to a Cardiologist and this maybe related to the accident and that i should go to ER and get some tests done before i go home tonight. I go the ER and 6 hours and a CT Scan of the heart later, they say my heart has had no issues from the accident.
My doctor says that now we need to find out the real reason why i have a murmur. After the Echo test, its clear that i have a BiCuspid Valve (with potentially severe regurgitation), and my LV has enlarged a lot. Still no symptoms for me at all. I can work out, play and everything normal
After this i get referred to a cardiologist and i now get a MRI of the Heart and MR of Aorta. Everything checks out normal(normal aorta, no aneurysm). ....except the valve and LV enlargement issue. But thats enough for me to get referred to a Surgeon.
Surgeon and a second opinion both conclude i need surgery right away because of mainly LV enlargement.
So here i am now waiting for Valve Replacement, and after much reading and doc recommendation, selected the On-X valve. I did consider Valve Repair, but right now getting another surgery in potentially 7-10 years doesn't seem very palatable.

Of course i'm very nervous. All happening so fast that my head spins. I'm going for the Minimally Invasive (Mini Sternotomy). That's what the doctors do here for an isolated aortic valve repair case. (I'm in California bay area). My doctor is Dr. Vincent Gaudiani. He has been around forever and doing this for a while, so i'm hoping i'm in good hands.
And if all goes well, the thought of being on Coumadin and managing that keeps me up at night too.

Any advise/encouragement from this community will be helpful. - On any of the topics - Recovery, Valve Choice, Coumadin etc etc.
Has anyone had the minimally invasive....Not even sure how someone can compare both, unless one goes through both. But docs seems to suggest its faster recovery and less pain later.

I do plan to document my experience, in as much detail as possible, for the benefit of fellow members and future members. Hopefully i'll be able to go back to this post someday and have a smile and show it to my kids. Trying to be strong....

Thanks!

 

[dick0236]

My Story - I'm 40 years old. No major health problems...overall very in decent shape......

......Any advise/encouragement from this community will be helpful. - On any of the topics - Recovery, Valve Choice, Coumadin etc etc.
Thanks!

Hi PGARG and welcome. This is a forum of people who have been where you are and can provide a lot of advice and support. I was a little younger than you when I had the surgery, had no major health problems and was in good shape when my docs dropped the surgery bomb on me, I'll take a shot at your topics....
1. Recovery. I had the surgery shortly after graduating college and went to work with a major company four weeks after discharge from the hospital post surgery. Had no real problems, beyond being sore, and returned to a normal life pretty quickly.
2. From what I understand, the ON-X is a very good modern valve and should solve your problem for a loooong time.
3. Warfarin(Coumadin) is NOT a big deal.....but you cannot "play fast and loose" with this drug. As long as you take the drug as prescribed and routinely test your INR, it should cause no problems. My only problem was 40 years ago and it was due to my own ignorance. Today, due to all of the information about the drug and testing procedures, problems are held to a minimum and usually are due to patient mismanagement. My diet, life style or activity level has not been affected by warfarin.
4. etc, etc....There are not a lot of etc's. It's a "bummer" that you have to have this surgery, but I believe you will find it only a "bump in the road" and you will quickly be back on here helping others who have the questions you have now..

I assume you are a golfer from your screen name?....PGA RG? me too, and I'll be hittin' the little white ball tomorrow.

 

[PGARG]

Hi dick0236, All I can say is Wow....you are an inspiration. I can't believe I would get to hear from someone who has a mechanical valve for more than 40 years. Its very encouraging to hear that coumadin can be taken safely for such a long time. I'm a very responsible person and I know that I won't have a problem following the proper regimen and any restrictions or discipline that comes with it. It still strikes fear in me because who knows what else I'll get in future and how coumadin will affect me. Stories like yours will help folks like me and others in the future. So please keep on telling it. If I come out of this fine, I hope to do the same for future member who will no doubt need encouragement and advise, and most of all Hope. Thanks

 

[Ryan CA]

Hey PGARG,

Bummer you have to go through it, but things really will be easier than you imagine. I am 39 and had my aorta and aortic valve replaced on June 20th, On-X Valve. I am in week 7 of my recovery and have done 4 bike rides in the last 8 days. 5-7 miles each. You really can bounce back from this very quickly. Try to contain the nerves and relax before surgery as much as you can. Good luck.

 

[haggis basher]

Hi PGARG.
I am surprised that you are having a 'minimally' invasive operation, as I though it was mainly for the 'older' patients, or people having a valve mend!
Anyway, good luck in your operation.
See Ya
Brian

 

[Paleowoman]

Hi PGARG - It's weird isn't it, having no symptoms but being referred for surgery. I had so called "minimaly invasive" surgery for aortic vavle replacement due to bicuspid aortic valve, it's normally done for isolated aortic valve replacement these days. I preface it with "so-called" because it's not really minimal by any stretch of the imagination ! It's just that instead of a full sternotomy you get a shorter strernotomy - here a link to a section of the forum where I posted some photos of my incision scar so you can get an idea of the incision: http://www.valvereplacement.org/foru...-incision-scar

I had a lot of sternum pain post op but I believe this was because I have a slightly depressed sternum so they would have had to manipulate me a lot during surgery, and because the hospital handled things badly - after being on good pain meds at the start (morphine) I was moved onto others which caused side effects and weren't effective at pain relief either. This is all definitley an individual thing/response.

I'm now seven months post op and still not back to the level of fitness and stamina I had before surgery - I was extremely fit, even up to the day before surgery doing weight lifting (with restrictions which I didn't feel I needed !) and lots of walking. I started cardiac rehab at about eight weeks post op so I'm getting there, but things slower than I'd like.

All the best for your surgery and for a speedy and smooth recovery.

 

[Harley2000]

Hi
I had a minimally invasive surgery 2 years ago go in between the ribs instead of splitting the breast bone). Dr did a replacement of the aortic valve with an mechanical valve and a mitral valve repair all through a 6 inch slice between the ribs.

Hospital stay is the same as any open heart surgery but after that (for me anyway) recovery was rapid. No breast bone connection issues or discomfort.
Dr said that he always does the minimally invasive surgery (has been doing it since 2007) as long as there are no other issues needing attention such as bypass and aorta repair. I am very happy he did mine that way but have almost no scar to show that I had surgery.

Warfarin use has been no problem. Get it checked in clinic and usually do that every 4 or 5 weeks. Only a few times required checking more often.

Have a good one!

Mike

 

[Harley2000]

Sorry for double post

 

[PGARG]

Hi ,
Ryan CA : That's amazing. I'm glad you recovered so fast and it certainly brings me hope that there will be light at the end of this tunnel. Was yours a mini incision or a full incision.

haggis basher (brian): I think you are confusing the TAVR procedure, which is done for old folks and is truly minimally invasive. In fact i dont think why they call the mini sternotomy as minimally invasive. They cut 3-4 inches instead of the full sternum. It's a marketing term i guess. I'm getting the smaller cut basically. Its supposed to have a faster recovery and less pain...because the breast bone is still partially intact. (not sure how much it helps).

Harley2000(Mike) : I have not heard from anyone about the in between the ribs procedure. None of the docs have offered it to me either. This seems quite amazing. I'm not sure why its not being done by everyone. I will research and in fact ask my doctor about it. Although i think its too late for me to make changes.

Paleogirl : I understand what you said about this still being pretty invasive. Sorry to hear that your recovery has been longer. I think i see different folks going through different experience. It all seems to depend on your body, the surgeon, your luck.... but seems majority folks get there in the end. (trying to be optimistic).

Thanks everyone for your stories and words of encouragement.

 

[Heart Of The Sunrise]

Hi pgarg:

Monday the 18th I am 17 months post-op with my ON-X valve. At my 1 year follow-up I was told that my LV has returned to normal size. My EF has gone from 45 pre-op to 60+ post-op.
I do not need to see my surgeon for two years for the next follow-up. Coumadin has not been a problem I just started home testing with the Coaguchek XS meter.
Life is good...best of luck!!!!

 

[Paleowoman]

Hi PGARG - I think you're right, TAVR is truly minimally invasive and they should call it that, and call the short sternotomy something else !

Yes, most of us get there in the end, always best to be optimistic - do post your expereinces here.

 

[knotguilty]

I am sure you will be fine as long as your doctor has had some practice in this field. You have youth and good health on your side. I had surgery on a wednesday morning and was wacthing the show Survivor wednesday night. Try not to worry too much. I know I didn't realize just how much better I would feel down the road.

 

[PGARG]

Heart Of The Sunrise : I am glad to know that your LV returned to normal size. Thats one thing i'm worried about. My EF is still around 50 so its able to function properly but my LV is enlarged really severely.

knotguilty: Good to know that you had a smooth recovery. My doctor apparently has changed over 1000 valves and overall 10K heart surgeries. So i think in the experience department , i'm all covered. In my case since i have no symptoms, i have been told i wont feel much different from now. That in a way is strange because i feel like i'm having surgery for no reason. If one has symptoms, you at least feel like fixing anything....but i do get it...i will eventually get symptoms and it maybe late then and i may end up with permanent damage to the heart.

 

[MrsBray]

42/f On-X on 3/5/14 Clearwater FL I feel a jillion times better than pre-op. I didn't know how bad I was until I was better. Does that make sense? My surgeon told me that he wanted to do a minimally invasive surgery ( a horizontal cut above the right breast). When we began talking about a possible aorta repair/replacement, I expressed my desire for the doctor to have as much room as he needed, so if he wanted to do a full sternotomy I was OK with that. I got the full cut but no aorta repair/replace, only the valve job. I'm OK with that! I've finally had 3 stable INR readings for the warfarin. I was already taking other maintenance medications, so adding one more wasn't a big deal. I didn't change my diet. My lifestyle HAS changed though! I'm much more active now than I've been in the past 10 years.

Our bodies adapt silently to physiological changes, which is why it's important to have the surgery when the doc says it's time. We don't want to do irreversible damage to our hearts while waiting for the onset of symptoms. So, you may not currently feel like you have symptoms but you may look back after recovery and say, "Oh yeah, I *did* have XXX symptom.

I had surgery on a Wednesday, sitting in a chair that afternoon, walking the next day, tubes out/last narcotics Friday, home on Sunday. Riding rollercoasters at 12 weeks, hiking mountains at 4 months. My scar itches sometimes!

The sound was a HUGE consideration for me. I did NOT want to hear it! But I can hear it, and sometimes people near me can hear it. It's secondary now, and I can't always hear it.

What else?
-Meredith

 

[Azzurri]

I had an ON-x valve implanted in March and a portion of my aorta replaced as well. My hospital stay was complicated by the fact that i had fluid build up around the heart so they had to open me up a second time to drain it. Not fun. But recovery has gone well and I feel like I am almost back to pre-surgery status. I play volleyball, bike and I'm in a cardiac rehab program that has me exercising three times per week. Coumadin has been a complete non-issue. It hasn't changed my diet or lifestyle in any way whatsovever.

I found this website extremely helpful and reassuring during the four years leading up to my surgery. Having said that, I doubt there is anything anyone on here can say that will stop you from feeling nervous and afraid with this surgery looming. But the reality is that this procedure, done by an experienced surgeon, has become a pretty safe and routine procedure. You are going to be fine and you will be putting this behind you soon.

The main downside to the mechanical valve for me has been the constant ticking sound and a pounding sensation in my chest, particularly when I inhale. I am told that this is fairly common when a mechanical valve and aortic graft have been implanted and that it might improve over time, or it might not. I know that some doctors are trending away from mechanical valves given the ability to implant tissue valves by way of catheter (which is expected to be refined further over time) and the fact that many valves can be replaced rather than repaired. See Dr. Allan Stewart's views on this on Adam Pick's blog where he states that mechanical valves will be obsolete in the future. Just one man's opinion. In my view, both tissue and mechanical valves are great choices when compared to the alternative of doing nothing!

 

[river-wear]

Hey PGARG, you'll be in good hands with Dr. Gaudiani. I originally picked him when I had a false alarm five years ago. This time I went to see Dr. Castro first - they both work out of Sequoia Hospital. That seems like a good place too, even though I ended up going to Pennsylvania for my surgery. I just passed nine weeks and aside from still needing to build my cardio fitness back up, I feel back to normal. Just wrapping up my 3rd week back to work too. The first week or two (after surgery) are hard, but then it gets better all the time. I had a sternotomy, but honestly don't know if they call it a "mini" or not; my incision was six inches. Not sure it matters - they're still fishing around in there, and as Anne says, there's nothing minimal about it really. But that's not to say it isn't manageable. I'm a baby about pain, but didn't need anything stronger than Tylenol after I got out of ICU the second day. I'm also sensitive to drugs, so maybe I was just "high" all week from the first two days of medication. ;-)

Azzurri, I get the pounding sensation too, even with a repaired native valve. Maybe it has more to do with reducing the diameter of the aorta. For me it has gotten better as the weeks go by.

 

[PGARG]

MrsBray : Thanks for your story and perspective. I must say that my fears about Coumadin have subsided substantially after hearing from so many folks about it being not a big deal. With proper routine and smart eating, it seems it can be managed pretty well.

Azzurri: Thanks for your story too. I'm sorry to hear about the fluid buildup part. I have been told that it happens in some amount of cases.

I am definitely worried about the sound issue from the valve. It seems to bother some more than others, but according to my doc, everyone's body is different and thus the sound level for everyone is different as well. I have also heard the same about the sound subsiding as the valve settles over time. I'm not sure about the pounding sensation but it seems it takes time for the heart to settle down, depending on what the state was earlier. My doctor told me that even though my heart is able to work fine now (LV enlarged), after the procedure , it will actually become inefficient for a while, because the whole dynamic of a One-Way flow valve changed. Over time though, the heart will readjust and retrain itself....and hopefully for the better.

BTW i sent a mail to my doc about Partial Sternotomy vs Horizontal Cut in between Ribs for Valve Replacement. My doctor is on vacation(which i knew about), and he called me at 11.30 at night, from a Sat Phone from some remote place in Alaska (that definitely impressed me). He said he wanted to explain to me that he knows all about the other procedure and the best surgeon in the US (somewhere in Florida) is his very good friend. He said he just has a difference of opinion and he contends that a mini sternotomy is a better procedure and provides better access and results.

My doctor (Vincent Gaudiani), is definitely a very good salesman, very good with words But, he is also more experienced in this than most doctors. He has performed over 10,000 heart related surgeries and over 1000 valve replacement surgeries. I'm sort of with east w.r.t my choice of doctor, valve and procedure. He also told me pain is a state of mind usually. If you go into this expecting some pain and keep an eye on life after it, you will be able to get through it much easier. I don't know how one prepares for Pain, but i feel i can do it, when all these folks before me have been able to....

 

[Heart Of The Sunrise]

Initially, post surgery as my heart was recovering from surgery and 57 years with a really bad BAV I felt it pounding. I also would hear it occasionally mainly late at night.
Now, 17 months post-op...no more pounding and I am very rarely conscious of the fact that it is different than the valve I was born with in terms of it feels totally part of me and natural.
Just take my Coumadin and other heart meds and I am fine!

 

[PGARG]

I'm still struggling with whether i should go for valve repair. Going to talk to Stanford Hospital even though my surgery is scheduled for next week for replacement with On-X. Not sure if other folks struggled with it until so late.
Any advise on what to expect post surgery Day 1. I read that it you are asleep for 4-5 hours after surgery and even then it takes you take 3-4 hours to come out of it totally. And after 8-9 hours of the operation is when your family sees you.

What is the most important thing to pack for the hospital? So far on my list are my Phone/Kindle, Underwear, Waterless Shampoo. (this all i learnt from the forums).

Also what is the most important thing Day 1 at home? I have already gotten the Chest Wound guard (again thanks to forums) and a Back Pillow.

thanks again everyone.

 

[river-wear]

Day 1? My surgery ended around 5:30pm. My husband and sister were allowed to see me shortly after. I woke up at 11pm and they left around 11:30 or so - shortly after they removed the vent. I drifted in and out all night. Take it easy with the ice chips; too many will make you nauseous. You'll want to eat them all! Go slow.

I took some pre-moistened face wipes to the hospital It felt good to wash my face, but it was too hard/tiring to do the normal way for a few days. I never bothered with much else - I didn't have any interest. By the time I got home I didn't need anything special. I left some bed pillows on the couch for when the urge to nap struck. (I have a 2-story house and only went up and down 1-2x/day at first.)

As for repair - only go for it if your surgeon has done a lot of them, or at least is familiar with the latest techniques. Repairs attempted ten years ago often failed because they didn't reinforce the root or other issues. Aortic valve repair is still a developing procedure, or at least it isn't nearly as well-established as mitral repair.