Eddie's Heart Valve Journal

Celebrating my three year anniversary! Beats the ICU from three years ago for sure!

Two years!! Can't believe it's been that long. Life is good!

Two year valversary today! Was supposed to skydive with my kids but the weather didn't cooperate. Two years ago today at 50 years old I walked into a hospital and put my life in the hands of a total stranger. Luckily those were some gifted hands!.
My surgeon told me without surgery I had maybe a year and a half left so now that it has been two years I am getting to experience things I never would have without surgery, on bonus time if you will!
Still do all I did before and a good bit more, still can hang with the 30 somethings on the softball fields and even try to do mud runs when I can. Life is Good!
For those waiting take heart, there is a lot of good stuff on the other side.
For those that have been around a while and helped me get through this, thank you so much, doubt I would have kept my sanity without you.

Been a while but I have been following everyone.
Coming up on two years in a couple of months. I rarely think about my surgery anymore. Of course the scar will catch my eye in the mirror sometimes but my surgeon was great and the scar is barely there. I do everything I did before surgery and more. I lift weights four days a week without issue and still play sports in my 50s. If you are about to have or have recently had surgery know that you can be back to where you were and things can become normal after surgery. Good luck and best wishes.

Doc says every thing is working just like a normal valve. No issues at all see you in a year. Woo hoo!

My one year valversary!! What an amazing year. It was not without some bumps but I did some really awesome stuff this year. Was suppose to have some neat skydiving pics today but the weather didn't cooperate. Thanks to all of you here!

Last year I put off surgery to dance with my daughter at the recital. Couldn't help but thinking that it might be the last time. This is from recital today one year later I am better than ever. Blessed to be here. Many more to come.

For those who have past the one year mark what did you do if anything to mark the occasion? I am going skydiving with my kids on exactly the one year mark then fathers day the next day. Spent fathers day in icu last year which made it all the more special. I got bonus years with my kids last year for Father's day, hard to top that.

What a beautiful day here in Tennessee. Looking forward to days like this is why we go through this. Cheers to all of you valvers, your all bad asses in my book.

First night of softball. Man I was nervous going out. Lots of what ifs. But I held my own, played with a lot of really young what I call kids, hell I am 51 I am at least 10 years older than the next oldest on the team. Played shortstop, yes the team sucks that bad. Held my own, triple, two doubles and a single.

Man it felt good. When I was told last April I had to have open heart surgery I thought for sure these days were over. Nothing better than going out and proving to yourself that this surgery only put life on pause for a bit and did not mean times like this was over.

I am 10 moths out from AVR. If you are about to have surgery or have just had it know that there is life after. Have faith, a positive attitude and work hard. Wish everyone well. Thanks for being there through those tough times.

So after the scare Edwards Lifesciences gave me with that call last week, here is what they sent me.

So today I get a call from someone at Edwards Life Sciences. The lady says Mr. Patton this is Edwards Life Sciences calling.... So first thing through my mind is "Oh shit, my valve is being recalled". So after my heart skipped a couple of beats and I regained my faculties she says "we would like to send you a replica valve" and I think she said something about a globe but the first few words was all I focused on. I think I croaked out an OK and she took my address. Took about 10 minutes to get myself together then I thought "Damn is that cool or creepy?". Oh, well guess the valve is doing good if I didn't have a heart attack from the way the call started.

9 months since AVR today. Feeling great and doing well. Even signed up for some co-ed softball and had my first practice this week. I'm 51 and playing with some people a LOT younger than me. They asked if I played last year and I told them a couple of games before the doc made me stop. Should have seen the face on those kids when they asked me why and I told them I had OHS last June!
Hope everyone is doing well and good luck to those who are about to go in.

Anyone have experience with the mended hearts organization? I have been asked to start a chapter in my area.

Thanks to all in this group who helped me get through 2015 not sure I could have kept my sanity without you. It has been memorable to put it mildly.
May those who had surgery before this year keep ticking away through the next one.
For those like me who had surgery this year may the next one be considerably less dramatic than this one.
And for those who will have surgery in the New Year may you have peace of mind and smooth and complete recovery.
Cheers.

Merry Christmas to all of you valvers and those soon to be.
As much as it sucks to have to go through this remember that this is a gift of life for you and a gift of time that your family would not have without it. In the not too distant past this gift was unheard of so celebrate, hug your family and raise a glass to the professionals and staff that did the work and those who cared for you when you were most vulnerable.
Here's to Christmases gained.

My wife got this ornament for me. Really choked me up.

Ticking along beautifully and savoring everyday.
That is all!

Since tomorrow is Thanksgiving here in the US, just want to say first, I am thankful to be alive and to have all of the Thanksgivings to come that I would not have had,
I am Thankful for the awesome surgeon I had and the wonderful nurses and staff that took care of me when I was at my most vulnerable. Centennial Heart Center ICU staff will always have a special place in my heart,
Also, I am so thankful for this group and others like it. My diagnosis of BAV with severe stenosis came as a shock. Finding out I had to have open heart surgery scared the hell out of me,. Having groups like this for a reality check and to see the successes so many had really helped me to get through without being a complete basket case, Thanks to all that contributes to this site. I am forever grateful.
For those about to undertake this surgery know that there is a new life on the other side, I am better than I have been in years, Be thankful that this surgery exists and is so routine now, you get a chance people less than a century ago would not have had.

Can't believe it's been that long since I walked through those hospital doors and into the unknown.

Things for the most part have gone really well. My exercise tolerance is a lot better than before surgery which I have been taking advantage of as much as I can. Still a little minor discomfort around the sternum sometimes but nothing more than an occasional nuisance.

Going into surgery I was like most of you wondering if I would ever be back to where I was before all of this started and I can say I am pretty close, it's not been nearly as bad as I thought it would be.

Good luck to those waiting, and for those on this side of surgery, keep on ticking.

This is Rufus, he was a valued member of my support team. As a source of comfort coming home from the hospital and a companion on the many walks during recovery. He passed away this weekend. Gonna miss this guy.

Aftermath of the Black light run.

Thanks to the pros that patched me up. Couldn't even think about this before.

I completed the Warrior Dash this weekend with my daughter. If you have surgery coming up know that you can still do great things after the surgery, I am better than I have been in years. I never thought 6 months ago when I found out I had a bicuspid valve that needed to be replaced that I would even be able to consider this but there I was at the finish line getting my medal and enjoying a celebratory beer with my daughter. Something that will be extremely special to me from now on. Have faith, trust your professionals and fight on.

This is us after completing the Warrior Dash. 3.7 miles of hills, obstacles and mud.

This is my daughter and I. I had AVR on 6/18 she has inherited my Bicuspid valve. We decided to run the Warrior Dash together. This is us at the starting line.

This is Rufus my running buddy. We put in a post op record 3.5 miles today. When I told him he was proud of himself.

No more tests, no more hospitals, no more doctors for a year. Decided to take my wife to the beach to put it all behind us.

Just did this today for the first time. Thanks to Adam for having this site. Amazing how a few months erases and changes your thoughts and memories. Reading about the days when I couldn't believe what I was being told to the days of acceptance and prepping for surgery to the scary time right before, to the first few days after when you are relieved it's over but still concerned about if you are out of the woods and how it's all going to play out if you get out of the hospital. And those amazing days when step by step get stronger and start to put your life back together and realize, I am gonna be ok maybe better than I thought.
As the Greatfull Dead said "what a long strange trip it's been".

Good luck to those with upcoming surgeries.

It's been 3 months, sometimes it seems like it's been forever ago and sometimes it seems like it was yesterday. Just grateful to have the years that I wouldn't have had if it wasn't for this amazing surgery and the doctors that perform it. They won't be wasted.

My daughter and I are going to do the warrior dash in october. I am 3 months post avr and she just found out she inherited a bicuspid valve from me. Gonna get a couple of mended heart t-shirts and represent. Just intend on finishing not looking to compete. Should have some cool pics.

https://www.warriordash.com/location/2015-warrior-dash-tennessee/

Had my 3 month post op with my cardiologist. Got an echo and was told "things look good and you are doing great. You are no longer recovering you are now recovered. See you in a year." Can't deny it I was a bit emotional. This has been a long hard road and I glad it's over. Was really getting tired of Dr offices and hospitals.
Thanks to God and an incredible surgeon I am better than before and look forward to the years I would have never had without this surgery.

One more big goal checked off the get my life back list. Played a full round of golf today in the 95 degree heat without issue. Was dragging by the 18th hole and wouldn't brag about the score but such a liberating feeling to be able to do it again. Almost there, thank god and my surgeon!!

I am a,season ticket holder for the Tennessee Titans. Game day involves a mile walk each way and a walk up the ramp to the third level. End of last year I was huffing and puffing at the top of the ramp needing a couple of minutes to recover didn't know about the valve then. Opening day was yesterday and when I reached the top of the ramp all I could think was thank god for this surgery. I am just over two months out and the walk and ramp climb was a breeze. Just know that on the other side there may be something amazing.

Doesn't seem like that long ago. Other than some soreness I'm almost back to where I was before surgery and have a lot more energy than I did then. Working full time going to the gym 3 times a week. My anniversary was this past weekend spent it with my wife in downtown Nashville walking the streets and dancing without any issues. Very blessed to be where I am in my recovery and know it will keep getting better.

Celebrating my 34th anniversary with my wife in downtown Nashville for a few days. When I had surgery in June didn't know if I would be able to do this so I am extremely grateful first to still be here and second to be able to walk the streets and dance with my wife tonight. A testament to the skill of all of the professionals that took care of me.

I had avr 7 weeks ago. Everyone is asking me if I did something special on my birthday since I had ohs. My response is yea something real special. I started back at the gym this morning and I worked all day. They look at me funny but I know you people get it.

Officially back to work today after 5 weeks! While I am extremely appreciative to be able to recover and come back to work, I had forgotten how long 9 hours actually is. :)

Doc cleared me for all activities today just be smart he said. Can't believe it was that long ago but that little of time has passed.
No cardiac rehab. I feel great and plan to start working out right away. According to my fitbit I have clocked almost 70 miles walking since mid june, I know every crack in the pavement in my neighborhood by heart. Ready for a new challenge, running program starts tomorrow! Told my doc it was like getting a brand new engine but only being able to drive 30 miles an hour these last few weeks. Can't believe how bad I was and didn't know until a couple of months before surgery.

Three weeks out from surgery today.

Doesn't seem like that long. Feeling almost normal, still a bit of pain around the scar but not bad. Finally starting to get my taste buds straightened out, thankfully. Those first couple of weeks eating was an adventure, never knew what something would taste like. Up to five miles a day walking and I think that is as far as I am going to go with it, even at that my heart rate only runs about 90 bpm. That's about an hour and 45 minutes or so every day, starts getting pretty old past that. Feel like I could do a lot more but Doc says not for a few more weeks so I guess I will just keep on doing what I'm doing. I have to say, I feel better than I have in years. I had no idea I had a problem, just thought I was getting old and slowing down, so glad they caught it when they did. Can't wait to be able to start doing what I want just to see how much of a difference this new valve really makes. Good luck to everyone coming on their date.

Two week post op update.

It's been two weeks since I had my Aortic Valve replaced. Still sore around the wound of course but only needing pain pills at night to help get comfortable. Taste is still way off, hope that turns around soon. I have finally got completely over the pneumonia and my lungs are nearly clear. Nice to be able to take a full breathe again.

I am feeling really good overall, walking more that four miles a day, not taking naps during the day and am able to do everything that I am allowed within my restrictions without problem. I go Monday for my first post op appointment with my surgeon and am hoping he lifts some more restrictions.

I have this new valve and it makes me feel better than I have in years, I didn't know I had a bad valve so I had no idea how much I was being held by by a defective one. What a difference it has made. Feel like I have had an engine overhaul, just got to take it easy through the break in period before I can see how much better it is.

If you are still waiting for your surgery know that for all the worry and what if's there can be something pretty wonderful on the other side.

3rd day home.
Still fighting some pneumonia so don't have full wind yet but I am thrilled with what I have seen so far, Two miles today at a pretty good clip, gonna have to ditch my wife as a partner, she's not keeping up. I can already tell what a difference this new valve is going to make, guess you don't know what you don't know. Even though I know I can't yet I'm tempted to see just what this new motor will do but need to wait for the green light from the surgeon first. Can't wait to get back to my full routine again, I know this is very early and my optimism may be premature, but hopefully those coming up on their day will have some hope that not only is there life on the other side but it may be better than you could imagine,

In retrospect...
Still trying to get my mind to piece everything back together. Kind of weird, like a jigsaw puzzle but with memories so not sure this is 100% accurate yet but while I am still within a week of surgery I thought I would provide some perspective for those who are like me and are looking at every angle and making plans for everything.
First let me back up and let you know how this all started. 50 years old and in great shape, worked out all the time, things were great, no issues at all then in March at my regular appointment my doc says you have a murmur, I say I didn't six months ago and he says you do now. Long story short I found I had a bicuspid aortic valve that was in bad need of replacement, no symptoms so if you are reading this saying I feel fine, doesn't matter believe the tests, trust me there are only two ways out of this and one is a guaranteed one way trip in a box, Take this seriously,
So, I spend a couple of months analyzing, well more like over analyzing this deal. So, once I made peace with what had to be done the questions started on what happens leading up to, during and immediately after surgery.
I am going to offer up some general thoughts about each and will be more than happy to answer any specifics this is just me and I in no way mean to represent myself as a representative for everyone going through this.
Pre Surgery:
If you are scared, if you cry for no reason, if you are mad at the world and if you feel guilty about any of it you are completely normal. Don't let anyone tell you this is no big deal, it's a hell of a big deal and you have every right to whatever feelings you are having. I think that is part of what it takes to prepare your mind for this.
For me, I needed to know everything in advance, just the way I am so I soaked up every piece of info I could get. A lot of people said it's best to just let it happen but that is just not me and I am glad I was educated going in as when I developed complications I understood what they were and what was about to happen.
Once testing was done and a date was set I found a strange calm I didn't expect. I had been a basket case and those last few days was really not that bad. Not sure why but walked in and went through all of the admission stuff without batting an eye.
Surgery: 6/18/2015
My biggest fears when it came to the surgery itself was the trip to the operating room and waking up after. There are a few things I am really, really thankful I did and one of them is I put together a playlist just for surgery, for me some select Pink Floyd. Going out to it and having the first recognition of being alive after surgery was hearing Comfortably Numb and Learning to Fly, I didn't have it in surgery but I did before and immediately after. My wife said when she looked over and saw my foot keeping time she knew it was going to be OK. Nurses got a kick out of it as well but for me hearing that instead of the beeping, and bustle that goes with an ICU was such a huge boost.
The next thing I remember is being horribly thirsty, wanting water more that I ever did in my life and not being able to have it.
Soon enough I was in a chair then actually up and walking, things were going great, then it happened, Pneumonia, As I said, I had done my research and knew this was one of the most common and one of the scariest complications, Friday night into Saturday morning it got worse and worse, things were really serious for several hours, I knew pretty much what was coming, back to ICU, steroids, antibiotics, breathing treatments, lots of painful lung treatments and coughing and that is exactly what happened,
By Sunday Morning I had started to pull myself out of trouble and was regaining my faculties. Friday night and Saturday are pretty much a blur,
Since it was Father's day my family was there most of the day but by mid afternoon I was feeling closer to myself and knew what needed to be done so I ran everyone off and me, the spirometer and a stuffed bear that basically got named Mr. GDMF due to the initials of what I said everytime I reached for him to cough got real intimate overnight, By Monday morning all of what I put myself through Sunday night was paying off. My lungs felt scorched, and very sore but I was able to come off the oxygen mask and go on regular oxygen and the world started to become less foggy again.
The second thing that I am so glad I did was to download some audio books, now I'm not a big reader but I'm not big on TV either but between the music and the audio books it was just nice to be able to turn everything off, tune everything out and lay back and just heal and sleep without doing anything including opening your eyes, I continued to have to have the lung treatments and they took a toll everytime so I would plan my day around those six hour periods, get pain pills in advance, have treatment, spend time with Mr. GDMF, then drift off to an audio book.
Monday I was feeling much better and getting antsy, Managed to finally get the chest tube out, only needed oxygen a few times a day and put on some shorts and a shirt and clean up a bit, Walked as much as I could and joked with the staff as well as thanked them all as much as possible whenever I could.
Yesterday I came home, have been walking and following the instructions to the letter. Still fighting the pneumonia but getting better everyday.
Parting thoughts,
One other thing I did that I am so glad that I did do is go to the Godiva chocolate store and load up on some of the best stuff they had, I also made a big thank you poster with a mended heart for the "O" in you and offered them to everyone from the chief of surgery to the custodial staff, To me those people are Rock Stars, Unheralded Heroes and Angels without Wings, I can't possibly express how grateful I am to the people at Centennial Heart Center for taking such good care of me,
Yes this is routine surgery, unless it is happening to you. What I mean is to the surgeons and staff they do this daily so it is routine, You don't do this every day and there are severe complications that can happen so don't think they are indifferent but don't let anyone tell you you are overreacting either.
Let them do their job. They are good at what they do and when they tell you something it is for your own good, don't take it personally and if it seems overly blunt before complaining ask yourself if maybe you needed it,
This is not easy, come in prepared to work hard, be uncomfortable and to hurt maybe a lot, If you want to get better it will take some sacrifice.
If you have never been in the hospital, the food is really that bad, it just is. Plan accordingly.
Speaking for myself, you are going to want to be by yourself a lot more than you think, if nothing else just to relax or focus at the task at hand.
Good luck everyone and fire away with the questions, this place as well as others was such an invaluable resource giving back now is the least I can do,

Surgery went great. Out in 3 hours thursday. Then Friday came. They don't know where the pneumonia came from but it got real bad real quick. Friday night into Saturday I nearly died. Went from that wasn't that bad to oh shit pretty quick. Started to respond to treatment Saturday night and barring another setback will go home Wednesday. Thanks for everything to everyone here.

So it was will touch and go for a day. But looks like I am going to make it. Best fathers day ever.

Fighting pneumonia

No cancellation today, looks like tomorrow is a go.

No call yet so hopefully I won't be postponed today like I was yesterday. As much as I hate the idea of going through it the idea of waiting some more seems worse at this point. Hopefully a go in the morning.