Jerry's Heart Valve Journal

It's been a while since I last wrote a post. As of today I'm seven years post-op with a prosthetic valve. Sometimes it seems like it was a hundred years ago. Other days it seems like yesterday.

In the three years since I posted last I've been living life. Been traveling and up in the air for work more than I thought possible. I've gained and lost weight, faced the facts that air travel isn't great for ones health. I've been blessed that I've only had minor incidents because of my daily warfarin. All related to a dosage mistake on my end, except for one where I stepped on a belt buckle prong. That day it looked pretty much like a crime scene in my bath.

I know there are some of you who are about to have your surgery and are filled with 1001 questions. Maybe you've known this was coming for years, or maybe you were like me and get endocarditis from your dentist and this has shaken you to you core and it totally unexpected.

I don't have a trove of sage device but what I can say is, life will change...EMBRACE it. In many ways, at least for me, life it was for the better after my surgery. I learned more about what family and friends meant to me than I ever imagined. While I was sick I vowed to live life with my eyes wide open. Focus on the future and while this may sound weird don't overthink and try to plan every detail of hospital recovery and stay. Your going to be a bit out of it the first day or two.

Don't stress about the operation. Trust me all the worry about needles, incisions, getting shaved like a poodle, catheters and the th dreaded breathing tube are things put in place to make things easier and better. Modesty will go out the window. For me that was hard before the surgery but once I was in the hospital I thought of the nurses as mechanics who knew more about me than I did. Don't fight the process and know you are in good hands.

Let your family help you. Let your friends who want to help, help. Take a deep breath when people ask about your heart attack, even if it isn't the reason your having OHS 😉. Listen to your doctors and find something that keeps you motivated as you pass your milestones. Something that will keep you motivated to recover. Stay ahead of the pain the first few months but definitely make sure you use pain meds for pain and not relaxation. Trust me it's far easier to do than one might imagine.

More than anything believe you will be better. Life is a gift and those who go through this get to push the reset button. Best Wishes and keep on ticking.

Jerry H

Four years ago today I got my second chance at life. While no one wants to have open heart surgery for me it was one of the best things that could have happened and I truly think my life is better because of what I learned about myself and how it changed my life.

So, the crib note version. I found out at 35 I had a bicuspid aortic valve. Things were fine, life went on normally until June 5, 2010 when I went to my dentist for a routine cleaning. I wasn't offered and forgot to ask for the antibiotics. Five days later I came down with the worst flu like symptoms, and over the next six weeks got progressively worse until July 14, 2010 when my doctor, who had been on vacation, saw me, took one look at me and said," Go to the hospital immediately." A Strep V infection had gone systemic. I was septic. In stage three heart failure and much closer to death than I was able to admit until recently. The good news is the infection responded to the flotilla of antibiotics they gave me that night and over that weekend. I lost 13 pounds in three days. Stopped having the worst night sweats ever and felt good for the first time that summer. The bad news, my valve was toast. After 30 days of Rocephin and ten days of making sure I was clear of infection I woke-up very early on August 30, 2010 and prepared for open heart surgery at 38.

The surgery was normal. My valve went in just fine and my aorta was in good shape. I woke up in recovery and knew life had changed. I was granted a second chance. There were a few bumps in the road but my recovery went by quickly and I was back to my self in a few short months.

I could tell you all about the surgery and what to expect but those posts are already written, scroll down for more info on those. What I want those who are reading this today, who might be getting ready for your journey, is to know life does change but it is SO much sweeter after you make it through this ordeal.

I made a few very big choices after my surgery and I have LIVED life. I travelled, I met the love of my life, my career grew into something I never expected and I don't look back. Well except for my annual post.

So my advice from year four. Don't second guess your choice of valve. There is no right or wrong. Do what feels best and right for you. I did a prosthetic and take warfarin. I can honestly say it's not a big deal. I test at home and it's a non-issue. I do watch my drinking and avoid sharp knives because I'm a klutz but that's it.

I did make a list of things I wanted to do after my surgery when I was prepping for my operation and I journaled. I am amazed at how life changed and how I changed for the better. When things get crazy I do go back sometimes and read those posts. There is a sense of clarity you can gain from this and I say embrace it. Valve surgery is an amazing gift. 50 years ago this was a dangerous surgery. 30 years ago it was a serious procedure. Now it's routine with a 2% risk of death. When things get nutty, stop, take a deep breath and think of the millions of people who did not get the chance you are getting.

As for the operation and the hospital and the myriad of fears and concerns about breathing tubes, catheters, body shaves, modesty, whether you'll have wi-fi in the hospital and whatever other random thing you are worrying about. STOP. You can't fix anything that is unknown. You aren't going to care about anything but your family and getting better. I couldn't actually read for a few days afterward. Pump head is real but kind of funny. Give yourself time to heal and rest. I was very Type A and my coping was to make recovery a competition. I got back to work quickly but it slowed me down in some ways. That lifting thing is no joke.

The only other thing to say is as bad as things seem now they will get better. Cherish those who are there for you and prepare to be surprised by those who you never expected to see step up to the plate.

To my valve buddies on here who helped me, I hope things are going well for all of you. Till next year for everyone else, LIVE LIFE!

Till next year!
Jerry

A few weeks ago I was playing around doing some random calculations and I started to wonder how much wear and tear I had put on my prosthetic aortic valve since the surgery. After some quick calculations I came up with the above number based on what is pretty much my standard daytime heart rate of 70 BPM. Three years out and I am doing fine. I have no issues with the valve other than it can get loud enough where people will here it when I am stressed out or after a heavy workout. Usually this is a good conversation starter though.

I have no issues with taking warfarin. Seriously, not to jinx myself here, but none. I test at home still and my INR in the past year spiked only once to 3.7. It was back to normal the next day. I eat a normal diet including green veggies. I still drink, but not in excess. I shave with a normal razor and do all the things a normal 41 year old man does. All that being said, my PT/INR has been between 2.4-2.6 for 50 of the last 52 weeks. Exactly where my doctor wants me. So for me, and for my decision options at the time, a prothetic valve remains the right choice at the time.

I am not sure who reads these journal posts anymore and this annual exercise is more about acknowledgement of an event on my part than it is about saying anything to a broader online community. I pop in here once or twice a year now mainly out of curiosity to see if Adam has posted anything new about the rapidly changing technology surrounding heart disease. Adam if you read this thanks again for starting this website.

So maybe you are wondering what its like to be a survivor three years out. If you are like me, everything in your life will slowly change. Mostly, in my case, for the better. I have often said to friends my surgery was a fork in the road and one of the best things to have ever happened to me. Seriously, no kidding. It slowed me down and made me appreciate life and that our time on this planet is finite. It is a beautiful world we survivors get to live in and I try to never lose sight of that fact. We, and yes those persons who are scared senseless about the operation, have a duty. A duty to all those before us who did not have the benefit of technology to save their lives to LIVE.

110 million beats is a pretty amazing feat for a little piece of carbon fiber and Dacron. I think of my valve and the surgery everyday. I see the scar every morning. I hear the valve every night before bed. It's click has become my constant companion of sorts. I don't know if I have another 110 Million beats or another 1,103,760,000 beats. All I know is I have today. I can plan all I want but its more important to live each day as they come with hope for the future rather than the expectation that it is a guarantee.

I hope everyone out there in the Cloud is well and to the new folks on here I wish you a speedy recovery. When you are well please do something that you have always wanted to do. I promise you what ever it is, it will taste that much better, seem that much brighter, feel that much more exhilarating and smell even more beautiful after you have recovered.

Enough of my musing, its too nice to be indoors today. Till next year, best wishes.

Jerry
Louisville, KY

So last year I said I was retiring from the site. I did that in a lot of ways to let my brain have a chance to move on from the year and a half of crazy stuff I went through before and after endocarditis destroyed my aortic valve and I had the my prosthetic valve implanted.

So two years out I feel good and am healthy. I have been monitoring my blood from home and have only had some minor bleeding issues usually from my own stupidity and rampant clumsiness, paring knives are not my friend. The scar has nearly disappeared. Physically I am not quite the same as I was before I got sick. I am probably 90%. I do take some things slower than before but am proud to say I was able to climb Camelback in Phoenix last year in just under an hour. My best time was 20 minutes in my early 30's. Lots of great changes in my personal life as well. A new special someone has certainly changed my outlook on life. In a lot of ways I think going through everything gave me clarity and focus. So to those out there who are on the path to surgery or just starting recovery believe in yourself and focus on the future. It may seem difficult when the fear and pain is your immediate companion but by keeping an eye on the future you maintain goals.

One thing that I do want to add from last year. I had my surgery at 38. I'm now 40. Something I still deal with is sternal and rib pain. I never imagined this far out it would be an issue. My advice is this the stretching and exercises they tell you about early on and the advice not to lift heavy objects is for real. I think in my haste to get back to normal I made it harder for my chest to heal and I did some nerve damage. So LISTEN to those nurses :-)

Best wishes folks
Jerry

Good-Bye to All That, A One Year celebration!

A year ago today I woke up at 4:30 AM. I followed a list of step-by-step procedures I had read no less than 25 times the night before. Steps to prepare my body for an operation that ultimately saved my life and changed my world in ways I knew of and ways I could never imagine. A year removed from that day and I can still recount nearly every conscious moment and a few perceived moments of unconsciousness. I can tell you what it meant to look into the eyes of the people I loved that morning and saying with a conviction I wasn't aware I had that I loved them...Always had...Always will.  I can tell you about the feel of the gurney. The Turkish German Anesthesiologist and our brief discussion about Munich as he tried to divert my attention from the arterial lines being inserted into my wrist and my neck. 

I can tell you how it felt, when out of sheer exhaustion, I let go and gave my body to a team of people I had never met. As the warm feeling of anesthesia and muscle relaxers rendered me from being a person with commitments and obligations, preferences and fears,  a 12 week of battle with an infection and uncertainty allowed me to simply fall asleep and become a procedure.

 Of course there are many things about that day I do not know of and never will. The moments of perception I had while unconscious are a gift I can never explain. The human mind is still very much a mystery to modern medicine and the line between science and faith; between physics and religion is one where my perceptions were altered that day to something very different than what I had known before. No scientist or priest will ever be able to explain it to me and it will always be a seminal moment of clarity I will cherish till the day I die.

Waking up after my heart valve was replaced and my chest was closed was amazing and my worst fear about the recovery became a comfort. Knowing a machine was doing the breathing for me again I just let go. Even so, I felt only what I can describe as a painful joy when the breathing tubes were removed in a slither and a suction and a painful cough two hours later. The absolute deliciousness of that first ice chip and the ginger ale that came shortly after were the best tasting substances I have ever had. As the afternoon progressed I can tell you at what point in that day when modesty no longer mattered. I simply didn't care. My body was in the hands of people who knew more about it than I did and those fantastic nurses Becky and David were the most amazing two people I hope never to meet again. 

Their guidance and control steered me through the most extreme pain I have ever known when I sat up, stood up, and sat in a chair at 5:00PM. In the cardiac ICU that night I cried. Not from pain but from joy. As the anesthesia wore off and with every beat of my heart I heard a click-click-click I knew faith and a higher power had brought me through. I was and still am amazed a year later by the prayers of well wishers, heart-valve-bloggers, friends, old school Catholic grannies and evangelicals I never met who prayed for my healing. As that day drew to a close and as I faded into sleep my second chance to live a life I was already blessed to live was reset. The sheer joy of that is something I often sit back and smile about.

The past year has been full of emotion and surprises and anniversaries. This Summer especially it truly dawned on me how long I was sick and how beautifully fortunate and wonderful living life can be. I'm not perfect. The surgery was an epiphany but old ways hold tight. I still make mistakes, yell at cars in traffic and have an impatient streak but these days I more often stop myself and let it go. In the end I think that is my final bit of reflection. 

Recovery is a series of letting goes. And while this race will never be fully over it is time to close this chapter. I am so very grateful for my friends on this site. I can only hope over the past year I helped someone to heal faster and paid it forward. I recounted the events above not only for myself as an exercise in remembrance but for those of you on here who may be about to have your surgery.  To those struggling with the pre and post issues that go along with open heart surgery please know you will be fine. It may not be easy and it is a major surgery. Recovery can be difficult but I believe if you have faith in your own ability to heal you will.  The days ahead for some of you may seem dark and cold or recovery may be going slower than you expected. Draw you family and friends close and reach out to those around you.

The author Loren Eiseley once wrote, "In the days of the frost seek a minor sun." In the end it is those minor suns be they wives, partners, siblings friends or strangers who will give you warmth. Warmth  which will bring you through the winter of your recovery.

So in closing as I finish my last post on this journal and retire from the site I say good-bye to all that was and welcome to all that will be. Here is to lives well lived and to a future with out limits. With that,  I sign off and say...hello to the next heartbeat.

One day after surgery.

What a PICC line looks like

Well, I officially survived one year from the date I became symptomatic with bacterial endocarditis. I won't start off gloomy but the stats for doing that feat are kind of scary. I had a lot of windshield time the past few days to think back on the period of time from when I got the infection to when the doctors figured out I didn't have a virus, mono, allergies, TB, cancer, and any number of other types of infections before they traced why I was slowly dying to Strep Viridens which just about killed me.

Just a reminder/update to the new readers, I had a BAV that was found by accident when I was 35. It was being monitored and I was a candidate for repair. I went to the dentist on June 5, 2010 and as the AHA and the ADA changed rules on pre-dental work antibiotics I didn't ask and was not offered any amoxcillin which would have nipped it before it began. Five days later I got sick and got progressively worse over the next 30 days.

While I will never be certain where I got the bug, the timeline matched up perfectly with my trip to the dentist. This according to my infectious disease doctor who by the way looks and sounds like Natasha from The Rocky and Bullwinkle cartoons. I refer to her as Dr. Moose and Squirrel. I digress...sorry.

Anyways, looking back on last year and at that time, when I was sick but not diagnosed, the emotion I felt a great deal of was helplessness. My little ordeal really made me appreciate how people with chronic illness feel. It also made me appreciate the wonder of modern antibiotics.

Looking at this site now and reading the journals one thing really becomes clear and that is surviving this operation often changes people for the better yes that sounds weird but it is true. To the folks going through the planning phase have faith that you are making the right decisions. To the guys who have had the surgery a piece of advice, write down someplace what you are feeling as you recover.

As normalcy returns and the surgery gets further behind me I have found it is easy to forget how freakin' amazing it is that I am still here. Often times a crisis can distill thoughts into their purest forms and the clarity I had 9 months ago was a blessing. When things get a little off or I have a bad day be it physically, which still happens some, or mentally which happens because, well...it does. Taking a few minutes to look back really has a way of putting everyday life in perspective.

Ok I'm starting to sound like Dr. Phil. So on that note I hope everyone has a great Summer. I will be making up for some lost pool/lake/boat time from last year but will check in a few more times before my bionic valves birthday at the end of August.

Till next time,
Jerry H
Louisville

Hello fellow HVJ friends and readers. Greatings from the Bluegrass State where Spring is in full bloom.

So I had my follow-up tests this morning and the good news is my bionic aortic valve is doing fine. The ejection fractions are in the mid 60's and the pressure gradients are normal and there is no sign of any vegetations in the seat of the valve and my heart is a normal size once again.

While I may have had a mild infection that caused a bout of night sweats it can't be cultured. Add to that the medicines I am on and a whole lot of paranoia about a very random situation that caused the endocarditis last year and you get the qoute in the subject line above courtesy of one Dr Jeff Stidam.

I am sure I am not the only person to have gone through this who ever felt this way but it was an epiphany of sorts this morning. I plowed through my recovery. I kept my mind so focused on getting back to better then before that I forgot to listen to my body giving me cues that I may have been going at it too hard. As cornball as it may sound my mind and spirit went through a lot of trauma last year and to get where I am at today took more out of me than I care to admit.

One of the nice things about having a close friend/fraternity brother as your cardiologist is they can tell you things you might not hear from a lesser known doctor. Besides that no one can quite call you out as well as someone who threw rotten food at you when you were 18 :-)

Regardless the point is valid and maybe one that others may want to keep in mind as they recover. The road to the finish is not a straight path and the finish line...well there isn't one in the traditional sense. My life has forever been altered in a way that will always set me apart from others and that is just fine because I am still here.

Valve surgery or any open heart surgery is not an easy operation and the trauma your body goes through will manifest itself in ways that may confuse and scare you months down the line. However if you don't believe you are well then you will have a hard time getting over some of the humps and moving forward.

Recovery is a series of plateaus. I think this may be universal for all of us who are in the 'club.' The thing I learned the past few weeks was to have faith in the future and accept that there are going to be little dips in the road and while it is OK to be concerned and prudent to be proactive. It is not OK to instantly go to the worst case scenario. I want to thank, Sean and Dianne for the kind words over the past few weeks and to my friend Shannon who after 16 years knows how to say the right things to encourage me to move on.

That being said I am putting the brakes on some on my travel plans for the year. I am still going to be taking some major trips but not because I 'survived' a major surgery. I am doing it because life is meant to be savored and enjoyed. Yeah Type A guy learns another lesson :-)

Anyways, till next time I hope everyone stays well and has a great Spring.

Jerry H

Hi Everyone,

Sorry for the lack of communication the past week or so. I needed to take a break to get my head right and the labs are doing their work still.

So the blood cultures are not back yet which in this case is a sort of no news is good news thing. If it were Staph or Strep the lab would have been culturing something by now. A full culture can take as long as three weeks. At this point I can also rule out TB...WOO HOO.

So as I think some of you might remember I am not a patient person so this week has been really rough. I did get a couple of bad bits of news. Apparently my lipids are really high. This is odd because they were normal before the valve was replaced. I mean I have cut back on veggies and I stopped taking fish oil back after the surgery but it was kind of a shock to find they were so high. Today I went on Zocor and added the fish oil back into my daily routine.

The big events will come next Tuesday at 8:15. I will be getting another TEE to look at the valve. My echo is inconclusive and not well visualized. This is not a big deal and it was the same way last year. We are still not sure about another a heart cath. My cardio is taking a wait and see approach and wants to do the TEE first. So for those of you who have not had this done it is not that bad. You have to swallow this stuff and they give you a spray to numb your throat and down goes the camera. The first time I had this done I was pretty much awake and other then a nasty coughing spell it was fine. They do give you the warm and fuzzy juice which really never quite works on me but still is kind of relaxing. Anyways, when the news comes in I will update you all.

I do want to thank you all for the encouragement last week, it really means a lot to me. I was in a pretty dark place last week but again I realized if something bad happens it is not like I don't know what to expect :-).

I have dialed my activity down a bit which is hard for me to do but better safe than sorry. Again thanks for the kind words and hopefully this will just be a fluke and all behind me next week by this time.

Thanks
Jerry H

So, there is no easy way to say this but over the past few weeks the early tell-tale symptoms of my nemesis endocarditis have been reappearing. The good old night sweats, sore spleen, fatigue, and shortness of breath are back. Luckily no temperature or chills.

My GP did some blood work and as expected the white count and sed rates are borderline where they were at beginning of my fight back in June. My very normal ECG now looks like it did back in June as well. In addition during a couple of moderate hikes I have been having that pinging chest pain right where my new valve is sitting and some numbness in my arm. The thought is the old infection could be smoldering in the annulus that was damaged from the bout and from the vegetation removed last year.

The good news is what ever this insidious shit is I am at least catching it early. Full blood cultures tomorrow and an echo and more will be done ASAP. This could be something else and I am trying VERY hard to not let my mind and spirit go down a dark path. But for once in a long time I need so encouragement folks. It is not like I didn't know this could happen again I just was hoping it wouldn't try to raise it's ugly head so soon.

I would be lying if I said I wasn't scared of of my gourd right now. I don't fear a second surgery. I don't fear antibiotics. I don't even fear death but I do fear eating hospital food again...Sorry I had to lighten the moment.

Oh, and to top off my week, my 70 year old Mom went into the hospital Sunday afternoon after she suffered a mild right side heart attack. She is doing very well and had a stent placed and is recovering quickly . By the way her valves are normal so thanks Dad.

I guess the moral of the story is to not brag about how good things are going :-) Also to the new folks on here let me assure you this is not all bad news. If anything I am a testament to the fact the modern medicine is amazing stuff. Pay attention to what your body is saying and even if you seem like you are being a pain you know your body better than anyone else. If you get push back it is your RIGHT to push back harder till you find the answers.

I will keep everyone posted over the next few days. I probably don't deserve it but again some prayers and positive thoughts would be very much appreciated.

Jerry H
Louisville

So this post is for my friends and family who were not aware of my journal over the past six months.

In some ways when I started this it was an exercise in fact-finding for myself. I found some very good advice from people on here who became digital friends and whose successes and setbacks I have had the joy of sharing. As I wrote more entries the journal became about me looking forward and reveling in the belief I have been given some truly special gifts.The way the journal reads in from present to past. If you really want to see how this all played out start on page four and work your way forward.

Some of you are mentioned in the posts specifically Todd who knew about the journal and Paula and my sister Alicia. I really don't know why or have a good reason why I have not shared my writing until today. Maybe it had to do with being by nature a private person and the nature of this blog allowed me to say things I wasn't ready to say to you all. At any rate this journal lays it out pretty raw. I hope you enjoy reading and more importantly I hope you take away my revelations about how important family and friends are to me.

P.S. No jumping on my typos :-)

Jerry

So depending how you mark time yesterday or March 1 marks six months since my surgery. Since I have the time I am doing my update tonight. Friends, I don't want to jinx anything here but I feel AWESOME!

I was going through some old notes and posts to friends and it occurred to me that I was feeling pretty awful already last year at this time. The valve was not far enough along to be replaced but it was certainly hampering my lifestyle. Over the past few weeks the plateau I had been on for about a month passed and my energy level, heart rate, blood pressure and stamina have rebounded to much better than before the surgery. I feel like I did 10 years ago. The future is again WIDE-OPEN. That alone is fantastic. Sickness of any kind shrinks your world and knowing I am again free to LIVE is just the best feeling.

I always have a hard time explaining to people what it felt like to be aware of my heart nearly every waking minute. Knowing that in my 30's I was feeling things my peers for the most part couldn't grasp and then knowing that I truly needed a surgery which scared the crap out of me. After I came down with the endocarditis my life changed so drastically and suddenly I was not sure I was ever going to feel the same. Looking back it was the most life altering and humbling experience I personally have ever had.

In the six months since the surgery I have had a few setbacks some of which are well documented. and I have mostly been positive on here but not all of this has been a walk in the park. There were days when it hurt. There were days when I did not feel like I was myself. There were days four and five months out when I needed a nap at 3:00pm. All totally normal.

At this point I am physically healed but mentally I still get anxious about things that could send me back to the hospital. Given my 2010 I think that is a normal reaction :-) The scar is fading away, that Mederma stuff is pretty cool. And yes occasionally I still get sore in my sternum after a heavy work out and my guts are finally, FINALLY getting back to normal after the two months of IV antibiotics. I have eaten way too much yogurt and more probiotics than I care to admit.

The clickty-click of my mechanical valve is not as loud as it was before. Frankly I barely notice it anymore. I know there are 'camps' on here for different valves and surgeons and hospitals so I will steer clear of those discussions. But I will point out to my older brothers on here your options are more cut and dried. At the end of the day my advice is to us unfortunate zipper club members in our 30’s do what is right for you and don't second guess it...Regret and nostalgia are utterly useless emotions in my opinion when it comes to this. Sure we have family, friends and people on here to give us advice but you are the one living with the ticking clock over your head or a bottle of blood thinners in the medicine cabinet.

In my case as an active 38 year old the thought of surgery three more times was not that appealing to me. I am so far...fingers crossed, not having issues with my pt/inr numbers. In fact I am at 40mg a week and am starting home testing this month. I suspect there are days I am high and low and it will be neat to see what exactly causes my blood to rise or fall.

The best part of this experience for me is just falling in love with living. Sounds corny and I have said it before but I really think I got a second chance for a reason and I am doing the best I can to live it. I am not posting much these days because it is my intention to move on at the one year mark. BUT the thing that has been interesting is occasionally coming across people who are going through the same thing.

I guess in some ways even though we survivors may not post much, it is not as easy to walk away as I thought. I know for certain Sean, Ricki, Dianna, Fran and several others Ladies of HVJ were so wonderful for offering help and advice. Finally to the guy who made this possible...Mr. Adam Pick you have created something tangible…a community and a truly valuable resource and I for one am grateful beyond words.

On that note I am probably not going to post until June. It is almost Spring here in the Bluegrass and that means Kentucky Derby Season is just around the corner. So this year instead of feeling tired and worn out I am quite frankly throwing caution to the wind and drinking some Mint Juleps and throwin’ some cash out on the ponies. Right after that is Napa and the trip to Italia. So I promise next post to put some fun pictures up.

God Speed
Jerry H
Louisville

First off folks I want to ask the folks reading this to say a prayer or send some positive thoughts out to Danny James and his Mom, Mary. Danny had a second surgery just 6 months out from his first after he contracted endocarditis in his new valve. I don't know much about Danny but I do know Endo is scary and no one, especially a 20 year-old deserves a bout of it.

So since my last post folks I have been living life. I am pretty much healed up but like all things have reached a plateau in the recovery.I am not Superman and my upper body strength is still catching up. I am not having problems with the warfarin. A couple of minor bleeding incidents but nothing serious. I have leveled out on the dose at 40mg a week and doing fine. I still drink and the only trigger I have is spinach which kind of stinks because I actually like spinach. I still am about as paranoid as a person can be about getting sick but this is not a bad thing. I guess it is just the reality that some days even five months out I have bad days but they are few and I promise you, there is not a day that goes by where I still don't smile to myself and still laugh amazed that I got a bonus round.

So in that bonus round thus far I have been to New York and saw Pee-Wee Herman on Broadway. New York at Xmas was a sight and man it was FUN. New Years Eve was spent with friends and it held a whole new meaning. Sitting there with my friends I did a lot of reflecting and yes some tears of joy. The best part of the past 8 weeks though was my trip to Playa Del Carmen this week. I caught a 5ft Black-Tip Shark and lets just say hilarity ensued as I did NOT want that thing on the boat.

I was barefoot in Mexico on a boat and here is this very pissed off fish with razor sharp teeth struggling to get free. I was thinking again...hmmm, maybe blood thinners weren't a good idea after all. So we cut the shark loose and hopefully he will tell his friends to show mercy the next time I swim in the Caribbean.

The last day of the trip was the first time where I showed off the scar at the pool. I got some weird stares but also some knowing looks. I guess the thing is as long as us survivors out there sporting our sternotomy scars we are going to get WILDLY inappropriate questions. I smiled and answered and I guess advocated.

So as I sit here tonight with snow on the ground reflecting on that gorgeous sunset from last night I am looking forward to a great 2011. My big 39 is in February and I am off to Chicago. I am heading out to the Key West in April and May is the big Italy trip. I have not being keeping up on here as much because at some point part of the healing is to move on. However like tonight it is important for us survivors to let you all who are about to get this done know it WILL get better. It is also important for us survivors to know this is a long race and like Danny and his Mom Mary are finding out the road has some curves and we can all be supporters here in this community.

God Speed
Jerry H

So twelve weeks ago tonight I was in the Baptist East CICU here in Louisville thanking God for pulling me through a deadly infection, a surgery and a set of circumstances I never and I mean NEVER expected. As those tears of relief streamed that night I knew my life was going to change and it has.

As I sit here tonight getting ready to head to my sisters tomorrow for a Thanksgiving which has a whole new meaning to me. I wish I could convey to those of you out there waiting how much better I feel. How much more I LOVE life. How much more I cherish every day I have been given. I am so blessed and I often look around in amazement and shake my head at how this all turned out. I am lucky. My AVR turned me from an work-a-holic Type A, GO-GO-GO guy into the person I wanted be. A balanced man who stopped sweating the small stuff.

I am not perfect folks and the past twelve weeks have been humbling and scary and painful. I have second guessed every decision about my choice of valve at least twice. Bitched about the antibiotics that ruined my guts for a time yet saved me from an intrepid germ. Then there is that little pink pill that thins my blood, lowers my temperature and seems to be doing a number on my hairline...who knew?

But the weeks have also been so beautiful Im a man of many words but I have a hard time expressing my feelings about this surgery. It seems describing an experience does a better job lately.

So this past week I was in Chicago for a trade show. A big one in my world. Lots of dinners, shaking hands with people who obviously had colds, schmoozing with strangers and four 18 hour days. I will say I was wrecked by Sunday morning. I may be healed but I am not fully recovered. Super Patient had some SORE feet and for the firt time since surgery a sore chest and back.

So as a reward, I have a little tradition I do in Chicago this time of year after this show and that is I go to the Gospel Brunch at the House of Blues. I am not a very religious guy. I am a Hoosier from German Catholic stock. So singing in chuch is a fairly limited thing amongst my clan. But for the past 15 years I have loved Blues and Gospel after I was introduced to it by a long dead mentor from Mississippi. To make a long story short. I was there listening to a stranger singing about how God made a difference in his life and if you knew that to be true in your life say AMEN, Hallelujah!

As we made eye contact I fought back tears AGAIN that day. Not because it was just God or whatever you believe in that helped me but that I had a population of people who helped HEAL me.

After all is said and done and the $110K in bills have been paid and the scars start to fade I found out this one simple truth. Life is a gift meant to be lived and having people you love and who love you back is the reward for doing it right.

I closing I want to wish everyone out there a Happy Thanksgiving and Holiday Season. Also in case you were wondering the new profile picture is me 20 pounds lighter and sporting a new beard and a rocking sternotomy :-)

God Speed Friends

Jerry H
Louisville KY

So this week I was talking with Paula and my friend Todd and we were joking about my wacky requests and concerns right before I went into the hospital. We were looking at the small library of books I bought in preparation for my stay and I realized I had not read ONE of them! OY!

If there are three people who deserve to be sanctified it are those two and my little sister Alicia. Of course I call her my little sister even though she is 33. Life has changed so much in the past 4.5 months since my endocarditis was diagnosed. I have posted about those things in the past but the best thing is I found out how much I loved life and am living it.

Since the last post I did have two not so fun things happen. I came down with food poisoning which started off with a 103 degree fever which sent me STRAIGHT to the ER and kept me there for two days till the infectious disease doctor figured out it was Campylobacter. No joke friends that scared the daylights out of me. A high fever and night-sweats were my hallmark symptoms of endocarditis in June. The worst part was seeing that 'look' on the doctors faces.

We all knew what the fever could mean and I will freely admit I lost if in the ER for about 20 minutes. I knew I had to stay and I knew that my life depended on it but chalk it up to PTSD and, well I wanted to RUN.

Fortunately I was too ill to sprint and the nurses would have had no problem chasing me down. The good news was I found out AGAIN how much people loved me and how caring my doctors are. It always stuns me just how much those folks juggle and still how they can have true compassion for a scared patient.

The other fun thing was falling...well tumbling backwards down my steps this morning. So yeah I am banged up but the good news I did not bleed out or fall on my newly healed sternum :-) I am probably going to look like a Jackson Pollock painting tomorrow with some of the bruises but for now I am doing well and was given an all clear by the doc-in-a-box. For those of you on here who don't know this I am an utter klutz. I always have been. I won't even tell you how concussions I have had...Come to think of it maybe life long blood thinners were a bad idea after all :-)

Anyways back to the subject which brings us together. My new mechanical valve is doing great. My ejection fraction is in the high normal range, my lungs are GREAT and my liver and kidneys are all good. My scar is fading a little each day. I have no signs of infection and my sed-rate is normal. Best part is my coumadin dose is dropping and is down to a below normal dose and I am eating and drinking whatever I want with no problems.

I know this community was an utter God send to me this past Summer and I know it is time for me to move on but at the same time I want others to know it will get better.

So in the months to come I am going to change my focus on here from posting about the clinical sides of this to posting about some adventures over the next 10 months as I continue to recover. On the one year anniversary I will retire from the site and move-on. I want people to know that after and AVR life does get better and this is just my way of showing others it does.

So, first up is a trip to New York to see PeeWee Herman on Broadway. This is followed by New Years Eve at a Black Tie in Chicago. I won a sales trip to Playa del Carmen in January so I get to show off my SEXSI scar on the beach. I am also planning on Jazz Fest in New Orleans, my annual trip to Napa and a confirmed trip to Italy for 10 days in May. Yeah I am good Catholic boy and this part of my trip was a promise I made to my Dad before he died in 2006.

Considering this past summer was spent pretty much indoors with a PICC line in my arm and filled with uncertainty this is my chance to LIVE. So that's about all for now. Good luck to the new folks out there and as always if any of you searching the journals have a question I am always open to give my perspective.

Jerry H
Louisville

"You are all clear, do whatever you want." And so ended the recovery phase of my valve replacement journey this morning as Dr Sam Pollock sent me on my way at 11:35am.

Six weeks ago today at 1:30pm my eyes opened in the recovery room for the first time after surgery. Mostly it seems like a lifetime ago and some days it feels like 10 minutes ago.

It is hard for me to explain how much my life has changed. I am fortunate, knock on wood, that through this crazy battle with endocarditis the only serious complication beside my half eaten valve was a case of C-Dif caused by some nasty antibiotics killing off every good germ in my gut and an INR level that has been jumping around for a few weeks as those nasty, life-saving, antibiotics have left my system.

Throughout this process I read where people suffer through depression and anxiety and sadness. I had a few days of all those emotions but the best thing about this whole experience is a very Type A person...me, got the chance to slow down and take a long, hard, sometimes-painful, often joyous look at life and the things that REALLY mattered.

I may have said this before but I have lived BIG. I have been truly blessed with experiences and friends and a family I really never expected to have as a kid growing up in Indiana. Honestly for about 10 years my life was a quest for material things and I let the intangible things slide as I pursued,'success.'

The past 16 weeks have shown me that while that there is nothing wrong with that path if you don't have your health and people who love you standing by your side the rest is useless.

At one point, about half way through this ordeal. Right before surgery actually, I was making deals with God. I was standing in the shower looking at the site where my first PICC line was and I said to myself, "I would give everything I own to just have my health back." Nothing else mattered and I meant it. I still mean it today six weeks after surgery as I sit here feeling great.

I am not out of the woods quite yet. Endocarditis is a scary infection and it is going to always be in the back of my mind as I progress through this first year. It is an awful cliché' to say there are no guarantees in life. So it is with this mechanical valve clicking away in my chest which may not last me till the end of my days. But if there is one other lesson I learned it is to have faith in your future and in the meantime live THIS life. The one you may be about to get a second or third chance at, or the one post surgery your are living right now as if you have only this day. I am going to plan for a long bright future but I am never going to forget how quickly it can vanish and how lucky I am to be ALIVE.

This will be my last post for sometime but not the last time I check in on some friends. I am so blessed to have found the people on here who were going through their journey who really answered my questions and reassured me that it was going to be OK. Thank you so much to those that offered a friendly word. I can only hope I did the same for some of you out there. God speed and good luck.

Till later...

Jerry H

Well yesterday was four weeks since the AVR Surgery, I guess that is a pretty big milestone.

It has been kind of an eventful week thus far. The PICC line actually came out Saturday night...by accident. I will spare the details but if you ever have one be careful when taking off your shirt if it is in an arm. No it didn't hurt, but it did freak me out. Long story short they couldn't repair it and so out it came. YAY!

So this week also marked the first business trip since the surgery as well. I did OK and it was a good trip. I still have some healing to do but it felt so damn good to go to work and be productive.

It was also kind of cathartic because it did mark the end of one stage of this journey. So much has changed the past 14 weeks since I was diagnosed with endocarditis. I am feeling better each day but mentally I am still shell shocked at how much life has changed, and it has not been all bad.

I am going to take a few weeks off from the site to focus on enjoying the Fall. I see the surgeon in two weeks and while I will never be the same person it is time for me to focus on the business of living LIFE. I will check in now and then to see how some folks are doing but the next step for me is to live the life I have been given a second chance to lead.

I ordered a medical alert bracelet and on the front I put my name and the date of the surgery. Obviously I also put that I was taking Warfarin but that was on the back. Just as this valve and the risks associated with it will be with me for the rest of my days so will that bracelet. Just as I can hear the clicking at night I want to look down on my arm and see that I was given a second and actually a third chance. Life is too short to waste on stuff that doesn't matter.

SO, on that note best of luck to those who are about to begin your trip. Thanks to those out there both family, friends and my HVJ friends who made me feel not so alone.

God Speed Friends

I had a good day today folks. My blood work and related tests have all shown that the dreaded staph aureous infection that was cultured from my valve AFTER it was removed may have been a fluke. Since it has been 22 days I am only going to have to take the nafcillin for SEVEN more days. WOOHOO!!!

Ok, so I take the whole endocarditis situation very seriously and I know I will for the rest of my life be at risk for another infection especially now that I am the proud owner of a prosthetic valve. But I have to say I will be jumping for joy next week when this damn PICC line comes out of my arm.

I am feeling better everyday and while I am still sort of sore I am not taking anything for it. My back is even FINALLY starting to feel better.

Finally the one last bit of cool news is I will be walking in the American Heart Association Walk this weekend here in Louisville as a Red Cap Survivor and have been tapped to be an American Heart Association Media Ambassador.

I don't need to tell the folks on here the AHA does amazing work which helps us all. They are always looking for people in the local chapters to help out and if you can find the time or treasure any help is much appreciated.

Finally to those friends out there about to start your journey. All I can say is it is a trip and while it is serious if you keep a positive attitude and surround yourself with the same you will feel and be better for this when it is all said and done. On that note I am going for a walk :-)

Jerry

Well fellow bloggers and others I am almost three weeks out from AVR surgery and I am feeling great.

I am still on the IV antibiotics as a precaution for another 27 days because of the endocarditis but other than some intestinal issues from the anitibiotics and the whole PT/INR levels being messed with because of the same I am feeling better each day.

I am walking an hour a day and am back to a 3.6 MPH pace. I am driving short distances and I went back to work part time this past week. I actually have to remind myself that I have a sternum that is trying to fuse back together. The 40lb cat litter box definetly reminded me of that yesterday. OUCH! :-)

This is not to say I didn't and am not still dealing with some head-trippy things. I have always been a very independent person and for the first time in a very long time I felt strange being alone and actually started to get fairly depressed about the whole heart surgery situation. Let's just say the Summer of 2010 is not one I want to relive...Ever.

I found myself getting angry at the world and especially fat people who smoke...I know, I know, this is just my curve ball and they are people just doing their thing but it all felt really unfair. Here I was the guy who worked out and played by the rules and I am the one who nearly gets taken out by a bunch of germs that eat a whole in my aortic valve.

The good news is that the fix for me has been getting out of my house and into the outdoors for a few hours every day. I also found that I needed to, 'talk it out.' with some friends and family I trusted who understood me and who could put the whole thing in perspective.

I came to the realization that I am blessed to have lived an amazing life at 38 and it only makes sense that when I got tossed a curveball it was going to be a crazy one. Beside that it was OK for me to be angry, grumpy, mean, snarky, blah-blah-blah after this ordeal. But, if I am going to move forward those emotions are useless.

Yes the situation stinks but the alternative was death and I was damn close to it in July. Throw into the mix the death of a high school friend last week of cancer at 40 and, well, I again realized how lucky I was/am just to be ALIVE!

So after all the head trash got swept away I was still dealing with the physical stuff. Maybe I am a freak here but for me the worst part of this whole surgery thing has been back pain and not being able to sleep on my tummy. It has gotten better every day and a presciption for some flexeril helped. I am finally able to sleep on my chest with a pillow underneath me. I also found this helped alleviate some night sweats I was having which were kind of freaking me out as they are a hallmark symptom of endocarditis.

So to wrap it up, things are getting better every day. To those of you out there about to start your journey take a deep breath and relax. Let people help you and realize it is beyond OK to feel the whole range of emotions you ARE going to feel. I am by no means an expert friends but it does get better and in the end God willing you will feel better.

I have a bunch of follow-ups this week so here's hoping the good news keeps coming my way.

Take care out there!
Jerry

Hi fellow HVJ readers. Sorry for the lack of posts. I tried to post on Saturday night but it did not take because the network at the hospital was down.

So I came home on Sunday after five days in the hospital. All in all looking back to a week ago it seems like a million years ago. I can honestly say that the stress leading up to the actual operation was so much worse than the surgery.

I can only say this for myself folks. I am a very Type-A-Person so for me the stress of being out-of-control and the not knowing was awful. Without the help of Sean M, Ricki S and the Ladies of HVJ I really think I might have cracked the week leading up to the surgery.

My first piece of advice is to stop planning your stay. Guys, I can only speak to you on this matter. Forget books it is hard to focus on letters. Take your Iphone/Ipod, Dop-kit, some boxers and socks and finally your laptop for the latter part of the stay.

So for those out there who are about to go under let me tell you how this went for me and some advice that truly helped me. It might work for you and it is only what helped me.

First off the morning of the surgery was fraught with anxiety. I was an utter wreck last Tuesday. Add the indignity of being shaved by another guy; Well is uncomfortable regardless of sexual orientation and it almost had me running out of the admitting area at 5:30am.

Luckily the operating room team came in and met me and after some very intense very quick goodbye's with my loved ones and I was off and being given some fantastic sedatives. It all went very fast and off to sleep I went.

I woke up around 1:30 with the breathing tubes in. It was not uncomfortable but different. I am not sure how long it was in but it was a quick process and before I knew it the tube came out in a slither and some suction and next thing I have some ice chips.

I have to be honest the day of surgery is painful but the key is making sure if you are in pain to tell them. ASK, ASK, and ASK for pain meds. They will give it to you. If not have family stay and make it clear you are in pain. Granted they cannot take away all the pain but it should be a 3 or 4 on a scale of 10.

What I found out from my CICU nurse who had been in the business for over 25 years was in young men (38 here) it is key to manage the pain early on. We are blessed with lots of nerve endings and that part in Adam's book about it being an intense white hot iron on your chest is no joke. The good news is you will not turn into an addict after heart surgery if on day one you get the max dose of morphine. I think the good pain management was the reason I was up and in a chair by 5:00 pm day of surgery.

Next thing was me realizing immediately that I actually felt better. No kidding guys my AV was jacked up and I could tell it was better. A lot of the time Tuesday was spent in and out of a haze trying to sleep and reflecting that it was OVER. It really was OVER and my job from there out was to get better. That night by myself in the CICU I know no one saw but I had tears streaming a few times.

Wednesday was the worst day for me. Moving from one unit to another was agony. Mainly because the transport aide ran me into a wall and a door and stepped on my foot. Once in the unit I slept and had family visit. It was still a haze and at one point I had to tell people to leave because I could not focus on more than one conversation.

From there on things kept getting better until Friday when I found out about the Staph infection that had been encapsulated in the valve. I spiked a fever that night and also got the news about another six weeks of antibiotics. On the bright side no blood test found staph or strep in my blood.

So it was not all great. Coming home the past few days has been different. I am walking daily and it is easy to get over worked. 10 lbs is kind of hard to judge and the biggest problem for me is just getting into these weird twists where it feels like my entire insides are being torn out. The key for me is being around people and getting up and doing something each day with my brain and body. The pump head stuff for me is real. I have misplaced nearly everything in the past two days.

The scar is healing, my breathing is great. DO THE SPIROMETER! EVEN IF IT HURTS! Do it in bed lying down do it sitting up just do the darn thing. You will get better. I am tapering down the pain meds as possible and my case of hospital acquired loose caboose is clearing as well. I am still having some hard time getting my number up but then again I am not eating a lot of spinach and drinking wine yet.

OK that’s enough for the night

Apparently the nasty vegitation on the aortic valve was from an old STAPH infection that my body encased with fibrin.It may have been a couple years old. Seriously...WTF.

SOOOO, I am, as a precaution getting another PICC line tonight and here's to another 6 weeks of antibiotics.My colon has been protesting all day.

For the record I am feeling fine. ONly a minor fever hear and there. I am doing steps and standing on my own. Still finding it hard to concentrate but that is getting better each day. I shouldn't complain, there are two 41 year olds on the floor and they are having a Hell of a time getting over the hump. There is also a 21 year old whose family is about to be murdered by EVERYONE else on the floor. A buffett dinner from a mexican restaurant is not a good idea in a cardiac ward.

Thanks for reading.
Jerry

More posts later but suffice to say it has been a long 36 hours.

Whew, what a day!

First up, the good news, after 15 years or business travel and way too many meals on the road my arteries are still in great shape. Yes I plan on keeping them that way! The ONLY thing wrong with my heart is the half-eaten aortic valve. I have to admit this I shed a few tears of joy at this news. Maybe it is weird but the whole thing about having a solution and a fix just made it all not so stressful.

So the heart cath was not bad, slightly uncomfortable but I think it was mainly because I am ticklish and had a hernia repair near the site where the cath went in. I had the most AWESOME nurses today as well.

After the cath I went to do the pre-admit stuff. OK maybe that was a bit much for one day. I am WRECKED but in a good way. Tomorrow at this time this will be behind me and I can begin taking my life back.

So I doubt I will be posting till Thursday but thanks so much for all the input over the past month to those who signed my journal.

OH, I forgot. I decided on a valve! In the interest of getting on with the business of life, for ME, that meant doing a mechanical valve. Like a lot of guys in their 30's the thought of doing this at least two more times and the stress involved was not worth it for me. I really want to thank Sean Murphy and Ricki Shine, your input was most helpful.

OK friends God willing I will see you all on the other side of the fence.

PS I am a little doped up right now and too lazy to spell check. Again I know I am playing into a bad Kentucky stereotype but for the day, it is what it is :-)

Jerry H,
Louisville

So fellow valve surgery survivors a question for you out there in the ether.

I was wondering if any of you had your spouses bring your laptop to you after you were moved? I got to admit it is kind of my lifeline and I am a news junkie. I am also aware that I am probably going to be in LaLa land for a few days but it is nice to be able to watch a DVD or waste stupid amounts of money on Itunes before I get slammed with the bills for this mess.

PS folks I really can spell endocarditis, I realize this is the second journal where I misspelled my condition.

Thoughts?

Jerry In Louisville

Hey folks I am back. I have been keeping up with a few of your journals over the past few weeks while I was out.

So to those who I don't know. Back in July I was diagnosed with bacterial endocarditis caused by Strep from of all things a dental cleaning. Yeah I am THAT guy. Mr. 1 in 600,000 :-)

At any rate after a month of IV antibiotics it has been cleared and the valve is getting replaced on Tuesday.

I took my tour of the cardiac care floor today and it was actually very reassuring. Somehow seeing all the stuff was fascinating, no joke. The nurses were super cool as well. So barring some weird blood work I am a go Monday for my Heart Cath and the AVR Tuesday.

Here's hoping eveyone has a good weekend! I will try to post Monday and someone will post Tuesdsday if possible to let you know how I turn out.

Jerry