I Lived

Waking up from surgery is a very surreal experience. The first notion of any kind of thought in my head was, “Wait…what….I think surgery is done and I’ve lived”. I tried to take in my surroundings while making an attempt to open my eyes. I managed one eye open and ended up with a look somewhere between disdain and surprise. I knew going in that the breathing tube may be still down my throat so my first efforts at being part of the world again surrounded me trying to get a sense of where the tube was and how to control my breathing. I tried to remain calm and could hear voices in the background of my wife and the staff in the ICU. I went in and out of consciousness for what may have been several hours until I really got tired of the breathing tube being in. At one point I woke and saw a couple of girls at the foot of my bed and I motioned to my mouth while gesturing that I’d like to have the tube removed. It happened that these girls were Respiratory Therapists there to do just that. They came over and gave me a brief that they would be taking the tube out and to try to exhale and cough as best I could. The feeling of a long tube coming out of my throat wasn’t painful. It was just very weird and caused me to gag and to make some noise resembling a long cough. The act of participating in that event made me very tired and I immediately fell asleep. Right away the nurse and my wife woke me up as I went into a “non breathing” apnea which apparently is quite common. I thought they were both being quite rude waking me up as all I wanted to do was to go to sleep.

 

I know from looking at the pictures, my eyeballs show that I was very much sedated but the pain level was mostly controlled. I knew as soon as I woke up that the surgery had completely done a number on me and it was going to be a much bigger deal than I had anticipated. My energy was eliminated and I felt like a very fragile bird in a nest. I went into surgery at 0730 and it was done by around 11am. The surgeon came out and told my wife that my Aortic Valve was very “Crummy” and he was surprised by what I had accomplished with my Bicuspid Valve. I can’t say enough about the surgeon and his amazing skill. Just a day at the office for him is a day which changed my life entirely.

 

The rest of the day went by with shift changes and medication being given. I took inventory of tubes and attachments. I had an IV in my left arm, a monitor hooked into my left wrist, a central IV line on my chest, two drainage tubes coming out of my chest, a huge dressing down my chest incision, and a catheter line coming out between my legs. I was at that time on morphine and at a pain level of about a two to three so not bad at all. The male nurse bathed me late in the day which actually was very nice to get all the iodine off and felt like a very caring and connective experience. There were interruptions through the night as people came and went from the bed beside me and hearing the family stress of a family member suddenly in ICU made me feel lucky that I had time to prepare both mentally and physically with getting ready for this surgery. I went into this in great shape and was in control of the decisions on surgery and valve selection. In emergency situations many aren’t so lucky.

 

I was thankful to be alive and have the support of my wife, sister and brother in law who were there for me during this time. I under-estimated how much this would affect me physically as well as emotionally. I felt miles from being who I was just a short time before.

Hardy Hill

Over the past year I’ve known that I was becoming more symptomatic. After running the marathon a year ago my lips were blue and it completely wiped me out. As I had nothing to compare that to, being my first marathon, I chalked it up to the fact that it was, well, a marathon. Since then I remained active but could feel that I was slowing down. On long runs my hands would tingle and my fingers would go numb. Could have been my iPhone band was too tight? My kids wouldn’t let me hug them in the morning as my hands were freezing. It was a cold winter. Couldn’t be my weakening heart output.
Still I didn’t want to face the reality that it was time for surgery. I continued to be active throughout 2015 running another half marathon which I had to really push myself to finish despite a personal best 1:50! I also started to train for triathlons and was finishing well in my age category considering it was my first season. The effort that I was putting in was enormous and I seemed to be hitting a wall. Maybe just getting older?
When I went for my yearly appointment in August I knew in that I was going to tell them about my symptoms and that the likelihood would be the Echo numbers would come back showing little progress as it had in each of the previous years. Well, when the cardiologist came in I could tell that my symptoms were probably a result of some progression of my disease. Part of me felt relieved that I wasn’t imagining things and the other half was terrified of the news to come. When he said “I think we should refer you to a surgeon to look at replacing your valve” I knew that things were never going to be the same. So many thoughts were going through my mind about how I was going to cope with the surgery. Was my career over? What type of valve should I choose?
On the way home I was feeling sorry for myself and then I thought back to all that I had accomplished in the past year with a severely stenosed valve. I was lucky. My disease hasn’t limited me or prevented me from doing what I wanted. My heart wasn’t damaged by my valve and for the most part I am a very healthy 44 year old. Darn right I am lucky.
Since then I’ve remained active with the only restrictions of no weights and nothing “competitive”. I’ve ridden in groups and I had been able to keep up even on some particularly steep hills. I’ve continued to run a couple of times per week and seemed to be maintaining my normal, albeit slow pace.
Until yesterday. One of the challenging hills for climbing is called Hardy Hill. I have managed to set personal records in the past month on this Hill and have kept up with my fellow cyclists. Even on occasion beating everyone to the top. Yesterday I could only get halfway up before needing to stop. Yesterday I felt like I’ve officially arrived in the waiting room as my aortic valve is not functioning as it had in the past. I know that if not making it up Hardy Hill is the worst my condition gets, I am in a very good place. It really is more symbolic that I can’t do everything I want. Hardy Hill didn’t beat me yesterday. My severely stenosed valve made sure that I was aware that I have limitations and not to push my self harder than I should.
I will return to Hardy Hill again. But probably not until I have a little cow part helping me get to the top.

Because Heart

 My wife and I have been saying “because heart” as an answer to all the questions of our life lately. “Why didn’t you put your dishes away?” Because heart. “Why aren’t you visiting us this weekend?” Because heart.
As I get closer and closer to the date of my surgery I get more and more anxious of the day. I’m not afraid of dying. I’m afraid of the process. I know that may sound weird but statistically I have a low probability of dying. I like statistics. On a scale of one to ten difficulty for a heart surgeon a valve replacement is about a two. Maybe a two and a half. While in the realm of miracle work for most of us, replacing a valve for a heart surgeon I would imagine is a day at the office. They have gained the knowledge and skill over many years and from the best in their field. That I find reassuring.
Back to statistics. I know for sure that this will have a 99% chance of being scary, unpleasant, difficult and life changing. I have been reading the surgery handbook from the hospital and I’m right on track preparing for surgery. It says under Anxiety and Fear….some sign you may notice are;

– Forgetfulness, difficulty concentrating, irritability, restlessness, difficulty sleeping, boredom, and depression.
Check, check and check. I can look at the entire list above and place myself in each of the categories. It seems unfathomable that in one month my heart will be stopped and a new valve will be installed. How do I process that and the possibility that my life may never be the same. I will be dependent on others to help me with basic tasks and the healthcare system to ensure my survival.

So I’m turning to meditation to take some time to help my mind relax from this daunting experience. It gives me the chance to give my thoughts a rest and prepare for the future.
I am also counting on my family and talking things out. It takes an unbelievable amount of coordination to ensure that our kids are also looked after and they maintain their normal lives. This is helpful to know that they will be home and have a normal routine for the time I’m away.
So once this is all behind me I’ll have to come up with a new excuse for not putting out the trash.

Decision

The hardest decision I’ve ever had to make in my life is which valve to choose. The decision could set in motion many unforeseen events and mean the difference of several years of my life. It has not been an easy one.

Going into this process I thought that the Ross Procedure was going to be the direction I wanted to head in. It offered the potential for a “lifetime” valve and would allow me to return to Triathlons and Marathon distance runs. After meeting with the surgeon the risks of the operation seemed too great for me to put myself or my family through. Being potentially active at the risk of not being able to continue my role as a parent and husband seemed too much at this time. All the risks that are inherent in the surgery itself are essentially doubled and this I couldn’t get my head around in the end.

Mechanical Valve was my backup choice going in. I know that I could have self managed the Coumadin and adjusted my life to mitigate any risks. I wasn’t afraid of the blood thinners. The noise of the valve was a concern for me especially after listening to some recordings online and this was one factor in my decision.

I have decided on a tissue (Cow) valve simply because it offers the potential down the road to see where the medical community is with regards to heart valve replacement. We have seen significant advancements in trans-catheter valve replacements (TAVR) even over the past five years. Right now TAVR’s are only used on the sickest patients. Those that wouldn’t survive a traditional surgery. The statistics on the outcomes of these patients isn’t all that favourable when you consider it among the overall patient population receiving valve replacements but very favourable to traditional surgery. In Europe they are starting to put the valve into intermediate risk patients and the outcomes have been very good so far. Longevity is the real question mark and as they say time will tell.

I have made a commitment to myself that if the valve fails prior to the technology being feasible and continuing a normal life, then at that point I will face another surgery and replace my valve with a mechanical valve. I am comfortable with that decision and very happy that I’ve finally been able to make the decision. I was literally changing my mind four times a day.

Now onto the next adventure……

Luck

Having a successful surgery and future comes down to as much luck it seems as the skill of the surgeon. The unpredictable nature of the recovery, and your own body’s reaction to the surgery, means that there are many variables to the outcome. Wishing to figure out how we will do with the surgery, you probably turn to the internet for guidance and personal stories about recovery and what we can expect following surgery. Information is key especially when it comes to making a decision as important as the choice of valve we want inserted into our bodies.

Just as we use the internet for information, many people post on the internet to validate a concern they have with their recovery. It’s human nature when things are not going the way we want or expect, we turn to others who may have gone through similar stories. We are looking for someone to say “yes I had those exact symptoms and it all worked out for me”. This leads to those of us looking for information about how we will fare after surgery to hear almost entirely bad results and complications from surgery. The cycle of fear and worry continues and in our minds the perception becomes reality that the outcome of our surgery will more than likely be a rough road. Those with complications post for answers, and those without complications seem to move on with their lives and put distance between themselves and their surgery. Only when the valve starts to fail again do they return to posting about their experience. This leads to the view that most are either having symptoms prior to surgery, symptoms following surgery or their surgery has eventually failed.

While I don’t believe the road to be a smooth one, I do think that those in the majority of the thousand of heart valve surgeries done every year end up with a normal, have a “not really worthy of posting on the internet” type of recovery. They then go on with their lives and put their heart condition away for a little while. They go on to do many great things and many more unremarkable things but the surgery has allowed them to live. Their surgeon had the skills necessary to change our lives.

I hope that my surgery is completely unremarkable. I hope that my surgeon forgets who I am and that I am just another successful, standard day at work. As a pilot, most days I don’t really remember as they are fairly routine and not worthy of any trigger in my mind as anything significant. However, there have been days where I can tell you exactly who I was flying with, where we were going and what had occurred. I love flying with someone who says we have flown together but I have no recollection. I know that things went smoothly and it was just another day at the office.

I hope that the same will be true for my surgeon and maybe, just maybe, I will post a reply on an internet forum that there are success stories out there.

To Go Bionic or Not

The choice is clear. When I look at the list of Pro’s and Cons for choosing a heart valve, mechanical valve does very well on my list. It has many positives.

• the durability of mechanical valves is without question. Statistically they should last a lifetime.
• self managing INR keeps the risks of thrombosis or stroke to a minimum. Statistically around 2% per year.
• allows the patient to move on with their lives without the worry of another surgery.

Now when I look at the negatives there are three that keep me from “pulling the trigger” on a mechanical valve. The first is the fear of the long term effects of Coumadin and the risks associated. As I said above, self managed care can keep the risks down to a minimum but the risk is still there. The really confusing thing to me personally is the advice from everyone from my family physician to my cardiologist saying that I should try to avoid the long term use of coumadin. Why? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3699194/

This is a comprehensive overview of the use of Warfarin for those with mechanical heart valves. Interesting that they mention the On-X valve which allows INR’s to go as low as 1.5 however in speaking to those with this valve the doctors aren’t yet comfortable allowing rates that low. Maybe something to think about though in the future for those considering a mechanical valve.

The other is the noise. I can hear my heart when lying down today. WHat will it be like with the ticking as my constant companion. As a fairly thin person, will the noise be even worse? Will it drive me insane? In a recent study “Patients (94.2%) with mechanical heart valve replacement have no persistent complaints about the valve noise. The grade of annoyance by valve noise is paralleled by lower average quality of life. Age under 60 years or being female increases the probability of severe disturbance due to mechanical valve sounds. It remains unclear whether the disturbing noise is reason or consequence of lower quality of life.”

For me personally, the other drawback is the need to maintain a fairly consistent diet and activity level in order to maintain INR within range. As a pilot living out of my suitcase on the road half the month, consistency isn’t exactly achievable as a goal. I can do my best but diet is a challenge and the inconststancy of my activity level may send my INR levels out of range. If that is the case I will have to remove myself from flying and sort it out before returning to work.

At this point much of my decision will be dependant on what the surgeon says at the end of the month and what he feels is best for me at this time.

Although, being bionic would be really cool….(that was my inner nerd talking)

Grounded

Grounded…..as the name of the blog is pilot heart I should tell you that I have been a professional pilot for the last 22 years. They have been an amazing “few” years and literally the time has flown by. For the first time in many years, I am not a pilot right now. As a licensed pilot we are required to hold a medical and with a rapidly progressing bicuspid aortic valve, I have been grounded by my congenital heart valve. It is one of the worst fears among pilots. Our career depends on not only our flying ability but also maintaining the fitness required to adhere to the medical standards set out by the regulator.

I am confident that following surgery I will be healthy enough to hold a medical. However, I do have to think about the “what if” scenarios which will affect my ability to regain my aviation physical. Am I scared of this happening? Yes and No. Yes, my passion is aviation and being a pilot is something I’ve wanted to do since I was seven years old. I would take the bus and ride for an hour to get to the airport, radio in hand. I would stand on the other side of the fence and long for the day when I could join those flying for a living. My career has been very fortunate and I was an airline captain by the time I was 33 flying the Boeing 737. The journey began when I was 16 and I applied for my Category 1 medical to see if I could even become a pilot. To the surprise of my doctor I was approved and the rest as they say is history.

The rest of my journey is uncertain. Following surgery I will have to submit the surgical report and discharge papers. Only then will the regulator tell me what the next steps are with regards to waiting periods and further medical tests. Information is not great with regards to mechanical valves and the regulation of INR on an ongoing basis. There isn’t much information with regards to the Ross Procedure and our Aviation Medical.

Hopefully my experience will be able to help those going through the same process.

Right now, I must make the decision of the path I will embark on and hope that it’s the right one.

The Ross Procedure

As i head into surgery I am faced with two choices at my age. A mechanical valve or something known as the Ross procedure. The Ross seems to offer a near future without blood thinners and the constant worry about bleeding and maintaining a balance which will not harm me. It’s like balancing on a beach ball. Too little coumadin and I run the risk of stroke and too much and I run the risk of not being able to clot if I were to bruise or cut myself.

This decision is weighing on me and I am in full on research mode about what would be best for an active man in his 40’s. That is me! I also have a career which requires a medical and this too is a reason to be concerned. I love my career but I love my family more and whatever I choose I have to put them first.

All i know is that right now I have a fatal condition. My aortic valve area is only 0.7cm. That’s not much blood coming down the pipeline.

The Ross guarantees that I will head into this again at some point between now and retirement. The statistics aren’t great past 15 years. At 15 years I would have close to 20% chance of having to have another operation. Past that the stats get much more murky. Do I want to go through this again?

One of the best overviews of the Ross Procedure I found is this:

http://circ.ahajournals.org/content/119/2/207.full

Freedom from re-operation is at 82% at 16 years and this is without the modified Ross where the Aortic Root is reinforced. There is potential with this new procedure to have a very long term solution without the need for blood thinners. I can’t remember where I read it but it was quote as saying that the Ross offers a 50/50 shot at a lifetime valve replacement.

Sadly, all the choices come with compromise and my life may not be the same again.

It’s Time

I was lucky to be born with a Bicuspid Aortic Valve. How lucky? Try 2% of the population. Yep. Lucky all right.

How has this affected my life? So far in my 44 years it hasn’t really impacted the way I live my life or the decisions I’ve made. Many years ago when I was around 13 I joined the Air Cadets to go along with my aviation obsession. Every summer there are opportunities to go away to camp and get away with the eventual goal to get your pilots licence. The only requirement is to get your doctor to fill out a very basic medical questionnaire. One question…..

“Do you have a heart condition?”

My doctor said….yep! So there it was in black and white. Firstly it made any dream of going away to camp disappear and also introduced me to my companion on this journey through life.

Through the years I put the condition into a nice little box and mostly forgot about it. I achieved my goal of becoming a pilot in spite of not being able to go to summer camp. It wasn’t until I applied to a major airline with a large medical department that I brought my condition out again to be looked at. They wanted me to give them more information so I received a referral to a Congenital Heart Clinic for a follow up.

The first visit was the cardiologist looked at the results of my echo and said, “things look good but at some point you will need to have your Aortic Valve replaced.” My reaction was one of disbelief as my Aortic Valve wasn’t really at the top of my mind and I couldn’t fathom needing it replaced.

That was 14 years ago and yearly visits told the same story.

Until this year when they said “it’s time”.

So now I embark on a journey to have my aortic valve replaced. I still don’t know what valve to choose but I’m almost certain it will be a mechanical valve or a valve swap using the Ross procedure. Perhaps new technology will allow tissue valves to be an option.

For Now I await the consultation with the surgeon and find out what he recommends.