Preoperative Appointments Galore

Being told that you are having Open Heart Surgery in 1 week is pretty daunting but the surgeon and his PA talked a lot about success rates, me being young, reduced recovery alternatives to full sternotomy, and high tech valves that allow for less blood thinners. It's hard to get too freaked out about it when the impression is that it's a doddle.  I'm not saying that they didn't explain risks but I came away with a feeling that this surgery was going to be a success and that's just that. 

Today, we had a pro-operative appointment with the nurse from the surgeon's office. She has been at the office for 2 years, and before that 20 years at the hospital that my procedure is in next week. She worked in the very same Progressive Care Unit (PCU) that I can will be recovering in once I'm done with Intensive Care Unit (ICU). We have met Gena before and she is super-nice. She went though a curriculum of material over the course of 2 hours.  Some of the information was about terms and medications that I'm going to hear / be prescribed, some of the logistics of the day before and day of surgery, and an overview of what will be expected of me along the way. 

One thing that struck me about today's discussions is that we tended to focus on the negative. That's ok from time to time but it sort of broke my 'stay positive always'. We covered a fair amount of the "here's what happens when you don't do x" and "expect for y to happen if we see z'.  I'm not complaining really. I understand being prepared, but I feel like it's more of an uphill battle after today's session than the foregone conclusion of success after the surgeon visit. We spent a lot of time talking about who to call and when given different scenarios relating to a less than perfect recovery. 

It's probably wrong of me to think about the session in a negative light. I remember we agreed that we thought it was very informative. We both said we learned things and that it was helpful to have met and gone over the topics. 

A few things in the instructions that caught my attention:

• Daily blood pressure, weight, pulse measurements taken and logged. 
• Daily showers 
• Clean t-shirt every day 
• Clean pillowcase on the heart pillow every day
• Clean washcloth every day
• Sleep on clean sheets the night before the surgery (after a shower and a session using wipes on my whole body) 
• My entire body will be scrubbed down after I'm put under 
• I may be on 2 daily pills going into the hospital, don't be disturbed if I'm taking 10 pills (or more) daily after I leave (for a while anyway)

I don't know what stands out to me about these instructions, just that they are at the top of mind as I rethink the discussions.  Also, 'don't be a dick to the nursing staff'. Seems kinda obvious but there were some instructions that made us wonder why the nurse felt it necessary to go over (she clarified that if she is covering it in her session, that means someone did it in the past and therefore it made the list) . Things like 'take the medication that you are prescribed' and 'call the office if your incision is red, inflamed, hot to the touch and appears to be separating'... 

I've decided to not let today focus my energy on 'what ifs'. On Saturday, I take my final blood pressure medication. On Sunday, I get to do my pre-Monday uber-cleaning and on Monday, it's up early and into the hospital to fix this valve once and for all. Tuesday and beyond, I will focus on being better the day before. I think that's going to be my goal phrase when I'm asked how I'm feeling: "Better than yesterday!" 

Blood Coagulation Monitoring

As I mentioned in Let's Do This!, my On-X mechanical valve will allow me to take a lower dose of blood thinners.  It's not a recommendation that the surgeon could make to me because it is still under trial by the FDA, however it is likely that during my life, I will be able to stop warferin and manage my blood coagulation using aspirin.Why are blood thinners needed with a mechanical heart valve? How does it work?I'm glad you asked. (I know you didn't but it's my blog...) 

With a mechanical heart valve, there is an increased risk of blood clots around the valve.  Obviously blood clots = bad.  Blood clots can inhibit the valve function but they can also lead to a stroke or heart attack. To combat this, patients with mechanical valves take blood thinners for the rest of their lives.  The most common is warfarin (branded as Coumadin). 

Users of warfarin (and anyone with a mechanical heart valve) are required to monitor their International Normalized Ratio (INR) on a frequent basis to measure the tendency of their blood coagulates.  This INR can be significantly impacted by what you eat and the medication that you take.  Foods rich in vitamin K can have a significant impact to blood coagulation. Thus, patients taking warfarin are normally advised to avoid significant changes in the consumption of leafy dark green vegetables, broccoli, cabbage, prunes because of their high concentration of vitamin K.  Also, with the use of blood thinners, patients are advised to avoid fad diets and extreme and immediate changes in eating habits.  

Blood thinners like warferin work by blocking the Vitamin K-dependent blood clotting factors. So the balance for a patient is essentially the amount of vitamin K vs the amount of blood thinners.

Home INR Tester

After my surgery, I will be having daily, then weekly, then bi weekly, then monthly INR checks.  Because I've clearly shown an organized and technical leaning (like having the questions printed organized and up, working for a tech company etc.) the surgeon is recommending that we purchase a home-testing kit so that we are not reliant on other medical professionals to manage my blood thinning over time.  Obviously immediately post-surgery this will not just be me going solo.

I will track and own all of my INR readings over time and will become an expert in how changes in my lifestyle or medications impact my readings. Having access to a full history of readings will allow other medical professionals the take into account how my body reacts over time.  The surgeon said that most of the time, a doctor will prescribe a new medication for me and I'll simply follow up with the pharmacist about how it may impact coagulation.

This day next week... (oh and Screw You Blogger App!!)

Before going any further, I want to say that I now *hate* the Blogger app (Android) with the passion of a thousand suns. I've just spent the past 1.5 hours typing up a witty and award-worthy blog post about the goings on of today, and just as I was putting the finishing touches to it, the app ate it all up and spat it out in my face.  I'm going to try go recreate the post to the best of my abilities, it will probably be not nearly as awesome as my original post, so you will have to artificially add a few extra globules of cool-sauce to it and imagine how nice it would have been to read the non-replicated junk that follows.

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So today was a bit rough for me. Not rough as in painful, or discouraging, or anything like that (with the exception of the aforementioned blog post being eaten) [Am I allowed to bring that up if I'm trying to recreate the original post?? Heck, it's my blog I can do whatever I want!]. No, today was 'tender'.  Let me explain.

Today I had 4 heart-related activities that needed to be accomplished.  One was a simple form that needed to be signed at the surgeons office giving them permission to share medical information with the company that manages Medical Leave of Absences for my employer.  That's a no-brainer because without that signed, they wouldn't share the info and the FMLA folks wouldn't process my claim to be paid while I'm recovering!! 

Another activity that I completed today was a call to my health insurance company to confirm that all of the providers that will be working with me are covered fully "in network" by my plan.  I was assured that the hospital itself and the surgeon and his team are covered by my plan but that I should take extra precaution to find out who the anesthesiologist will be and pre-screen them because many people get caught out with a large "out of network" bill that has no agreed pricing and the doctor can come after you for any differences between the covered amount and the actual charge.  I called the hospital and they let me know that they us a local provider for all of their anesthesiology needs and recommended that I call them.  When I called them, they assured me that they are fully in network for my insurance provider.  This was all good news and somewhat of a relief to know that it is fully covered.  Someday maybe I will write a blog post about the cost of all of this stuff (it's astronomical) and I'm incredibly lucky that my employers have wonderful benefits and that the entire debacle from the event in Vegas to the surgery next week will cost me no more than $1500 in total out of pocket expenses.

Next up was a 'pre-operative pre-admission" thing a the hospital itself, where we got all the paperwork out of the way now, so as not to have to deal with that on the day of the surgery. This also included taking some 'vitals', a couple of chest x-rays, an EKG (on a side note, am I the only one that is bothered by the fact that it takes 5 times as long to get the clips and probes in place as it does to do the actual test??  Figure it out people!!), some blood draws for various things including typing and cross-matching me in the event that I need blood transfusions during the surgery, and a nasal swab to test for MRSA colonization (MRSA + heart surgery = bad).

After that, the final chapter of today's hospital activities was a visit with the Occupational Therapist to discuss various elements of my post-surgery recovery. We were greeted by a soft spoken lady name Sue who was very pleasant.  Sue asked various questions our house and my recovery team (i.e. who will be around me when I return home and what type of obstacles will exists there).  She wanted to find out out if we had stairs in the house, how many steps up to the front door, what type of shower we had (to see if I could easily get in and out). Nothing out of the ordinary.  Sue went on to demonstrate various activities that I will need to be cautious doing during my 4 - 6 week 'sternal precautions' time.  These included sitting and standing from a chair, getting in and out of bed, and the reaching/grabbing/lifting/pushing/coughing limitations that I will have during that time. She explained that the time frame for 'sternal precautions' will be determined by the occupational and physical therapists that are assigned to me at the time.  We covered return to work expectations and a better insight into things like not being able to drive during that time and things that I will become used to over the coming weeks (like ways to easily get comfortable i the bed).



I was also introduced to my new heart pillow from the hospital (not to be confused with Pumpy) which will be used during the aforementioned activities during the 'sternal precautions' time. This pillow (which is pretend heart shaped similar to the one on the right) is held against the chest to provide additional support to he healing sternum.  Apparently the pillow even has a handy strap for taking with me wherever I go.  There were some very strict instructions in the use of this pillow with dire warnings for not using it (or using it incorrectly).

Sue also covered some of the other elements of post-surgery life at the hospital including a fair warning that I won't get much sleep in the first few days with all of the nurses checking vitals, running tests, getting me to go between bed and chair, taking me on walks etc. She noted that the Occupational Therapist and the Physical Therapist assigned to me will set some goals during the recovery, and meeting these goals will be critical to my discharge from the hospital.  One of those goals will be for me to take a shower.  I was surprised to hear that the first shower that I take after surgery will also include my wife and the occupational therapist in the shower with me!!  It seems somewhat unfair (but understandable I suppose) that I will be the only person actually without clothing but I was assured that my "personal privacy" will be maintained to the best of their ability...  Sue noted that most people are so happy to be actually having a shower that they don't really care who will be in the room with them.

So all of these proceedings went down without a hitch.  The hospital events were very efficient and all of the staff were their usual friendly selves. So why does today feel tender?  I think it is a mix of a few things, not the least of which is that this day next week is the day of the surgery.  In fact, this time (11:30pm) next week, I should be well into my recovery, maybe already out of bed, breathing on my own, been seen by my family and being taken care of by a group of highly trained professionals who have my health as their number one priority!

Maybe it's the "being at the hospital" today and seeing patients being wheeled around, and visitors coming and going, that makes the surgery that seems so far away that much more real and happening.  I am reminded by a great scene in a great movie that I wanted to share with you I'm feeling right about now. Skip to 1:23 into the clip for the reference:

That's right... It's Happening Reg!! It's no longer something that's way off in the distance but something that's happening "next Monday"!!  I'm really excited about the restorative power that this surgery is going to have.  I'm feeling overwhelmed by the wonderful family and friends who are pulling out all the stops to help us get through this. I'm keenly aware of the fact that not having this surgery would ultimately result in my early departure from this world. I understand that it's better to get this sorted sooner rather than later. I know these things to be true, but this evening I'm still a little tender. 

I'm going to try to sleep it off and take Tuesday by the horns.

Let's Do This!

Ok, so the day came for the Cardiac Surgeon consult. I don't remember if I noted this before, but the surgeon to whom I was referred does consultations on Thursdays. This is not a big deal except my visit with the cardiologist during which we decided surgery was the next step, was on a Thursday, and the following Thursday was Thanksgiving.  So the next available consult was Dec 1st.

For the 2 weeks, I tried not to build up my expectations too much for how much would be resolved on "the big day" but, to be honest, it was pretty hard not to feel like the meeting would result in some answers.  I didn't sleep very well the few nights before and on Dec 1, I couldn't think of anything but the 2pm appointment.  In fact, I fell asleep mid-morning which turned out to be a Godsend because it took the edge off the waiting.

We showed up at the allotted time and were greeted with coffee/tea/water/juice and we did some preliminary tests (blood pressure, temperature, etc).  I was asked to walk 5 meters, 3 times while being timed (never really figured out what that was about).  We then had a really nice visit with the surgeon's Physician's Assistant who explained about their facility, the suggested procedure, the likely outcome, and then we went through all of the questions that I wanted to ask (see Questions to Ask Your Surgeon).

Both myself and my wife were really comfortable with the PA and he reviewed the hospital's safety record, the surgeon and his own records etc. We talked about various courses of action and landed on the same conclusion to which we had already come.  Some of the questions resulted in some hilarity between us and it really made us feel like he had our best interests in mind.

When the PA was done, the surgeon (Chris King)

Chris King MD, FACS

 came in and we talked about the procedure.  He was really very pleasant and not at all self-obsessed of full of himself.  Quite the opposite, he was humble and friendly and answered our questions clearly without making us feel like we had dumb questions. He gave us as much time as we needed and didn't rush us at all.  

Once we decided that we were going to proceed with Open Heart Surgery and that a Mechanical Valve would be the best option for.  The surgeon wants to do a mini-sternotomy and the valve that he is going to use is an On-X valve which is made of pyrolytic carbon reducing blood-clots around the valve over time.  

http://www.hopkinsmedicine.org/sebin/h/i/Chest-Mini-Stern.jpg

The significance of the mini-stermotomy is that they will not cut down the full height of the sternum but will cut down from the top and then make a T cut to allow the surgeon to separate the ribs enough do the replacement.  This makes the healing process smoother, reduces the risk of infection and blood loss, and shortens the hospital stay!! He mentioned that it's good for them too because it is easy to open it fully up if there are any complications too. 

http://www.onxlti.com/

The On-X Mechanical valve is state of the art and patients with one of these valves do not have to use as much anti-coagulation medication (like warferin).  In fact, in other countries doctors are recommending that patients control their blood coagulation with a simple aspirin regimen.  The FDA hasn't approved this yet in the US, but blood coagulation is something would be my responsibility after the recovery period. 

Once we all agreed on the next steps, the next question was "when do you want to have it" to which we both answered "as soon as possible"!!!! The next available slot was December 12th, so we jumped on that!!  Kickoff will be 5am and we're hoping for smooth sailing!

A Wonderful Benefit

Staring down major surgery can be a pretty daunting situation.  It is a very odd feeling because the objective and logical viewpoint is that the surgery will, in my case, be life saving and the outcome is most likely feeling better and a longer shot at life than without the surgery. And yet, when the cardiologist said "it's time to replace that valve", there was still a sinking feeling.  The next reasonable thought is to seek a second opinion.  It just happened that I was chatting with a friend at work, and she told me about a benefit that we have through work which offers a medical review! We both thought it was interesting that neither of us had ever heard of this, even though it has been available for some time. 

The promotional materials for the benefit say that you gain the insight of a panel of medical experts who will review your situation and provide an clinical overview and answer any questions you might have.  I was quite skeptical but decided to give it a whirl.

On October 31st 2016, I followed the instructions my company intranet and filled out a simple form (name and a brief over-view of my situation). Within 24 hours, I got a call from a cardiologist from “Advance Medical” (the company that provides the benefit).  The doctor asked me to describe my situation in detail, asked lots of questions and gathered the names of the medical professionals that I had seen so far for my issues.  He asked me to articulate all of the questions that I had, and helped me to formulate the wording to maximize the opportunity to gain the best insight.

He went on to explain that he would spend a few days gathering my medical records from each of my doctors and after that, he would assemble a packet of information, along with my questions, and submit it to a panel of experts in cardiology who would review my packet and questions, and would then provide answers to him (as my physician case manager).  He informed me that he would contact me within 2 weeks with the results.  In the meantime, he provided me with his email address and encouraged me to email him with any questions that I might have along the way.

Fast forward to November 30th 2016 when I received a 33 page pdf report, analyzing all of my medical records with 2 independent opinions on what my next steps should be.  In my case, one of the experts was a Professor of Cardiac Surgery in Harvard (and Cardiac Surgeon in Massachusetts General Hospital) and a Professor of Clinical Medicine in UC School of Medicine. The report reviewed each of my visits with doctors and hospitals and had commentary (from each expert) about the results of all of each of the procedures.

The report also included a detailed (1 page per expert) set of recommendations and each expert answered the questions that I had originally given the cardiologist on the first phone call.  

The following day, I received, via FedEx, 2 printed and bound copies of the report!

Printed and Bound Copies of Expert Medical Report

The two experts were in complete agreement that the best option for someone with my diagnosis should have open heart surgery using a mechanical valve.  One of them noted:

"If you undergo tissue valve replacement, you will need at least three or four other interventions (transcatheter or standard surgical), assuming you will live at least into your seventies. In my opinion, the cumulative risks of these procedures is higher than the risk of life long blood thinners."

This was exactly what I felt was what was in play (see Hurry up and Wait) and to hear it confirmed by some independent doctors gives me some confidence that we're moving in the right direction.

Pumpy and a Better Blog Than Mine

A couple of weeks ago, while I was trying to process all of this crazy heart surgery stuff, a gift arrived in the mail.  This little guy is a "realistic" heart plush toy!!!  I think that is he is adorable!  I posted a photo to Facebook but nobody owned up to sending him to me. 

My kids asked me what his name was (which I hadn't really thought about) so I named him "Pumpy".  Too literal?  Probably but I liked it so it has stuck.

Pumpy the plush toy!

He's made by http://iheartguts.com/ and they have a huge array of toys, and gizmos for a ton of different organs.

My personal favorites are the tonsil and the colon!  How awesome is that???

I can think of a bunch of people that could use a plush toy of their offending body part!!

I also bought some button badges and a heart key-ring for myself (arriving soon).




Plush toys arriving from an unknown source would probably not be something that I would normally have shrugged and said "that's awesome" except that I have so many wonderful friends that might have sent him alone out of the goodness of their hearts!  I wasn't even really in search of the sender - just a little curious.  Just a couple of days ago, on of my best friends messaged me and asked if I had figured out who sent the push toy and followed the question up with a 😜 HaHa!  Yes I had my sender.  My buddy told me that he had seen a the toy on a blog that he had been recently reading and couldn't resist sending me one.  I *had* to ask more about this blog, so he explained that it was about a young scientist who found out that she had a congenital heart defect and required open heart surgery to have it corrected.  Of course, I got the name and started reading!

I have to say that my blog is mostly just random crap that is floating around my brain, but https://defectiveheartgirlproblems.wordpress.com is the work of a very clever and funny lady (Summer) who approached her surgery in a not-too-dissimilar way that I am.  She did a lot of research, learned about the options, asked lots of questions and blogged her journey along the way.  It was a fascinating read for someone of a similar age (ok she's 5 years younger) facing down a similar surgical procedure.  Reading about the run-up to her surgery is eerily familiar to my current situation and following her through the procedure, recovery, return to the civilization and the on-going challenges of dealing in a post-operative world.

There were a few bits and bobs that she shared that I have been dwelling on (more like noodling on).  One thing that she said was that she was going "science the shit" out of her experience by learning as much as she could about it and applying her scientific methods and understanding to each step in the journey.  The funny thing is that I had only just recently said to my wife that we needed to "project manage the shit" out of my op and recovery (and about how what assistance we'll need around the house, with the kids, etc). 

Something else she mentioned that she was "fucking pissed" at her heart; that her heart had violated the trust that she had placed in it all of her life to keep her alive. In her case, her heart was slowly getting worse but she had absolutely no symptoms so she didn't have a clue that there was anything wrong (beyond being told that the had a heart murmur in the past).  I had never really given much thought to my heart beyond just being a body part, but something at which I could have a semi-disconnected emotion towards.  But I totally get what she was saying.  

In her case, while the surgery was successful, she had some serious pain issues post-operatively and then was hit with PTSD a year and a half later, probably related to how clinical her approach to her situation had been which failed to fully embrace the emotional elements along the way. The emotional roller-coaster that she experienced ended up changing the course of her life and even made her rethink pursuing a PhD. 

Summer's blog really reinforced my own thoughts and feelings about the procedure and I'm hoping to learn from her experience and really attempt to address the emotional side at the same time as the medical/physical side.  In fact, a few weeks ago, I engaged a therapist to talk through my emotions with.  So far we've had some good sessions.  Being Irish, the idea of "getting a therapist" seemed counter-cultural.  Therapists are something in Hollywood movies (who always seem to hook up with their patients after the first visit). Seemed like a good idea to me!! When I told her that my Mother had indicated some concern that I would end up in an affair, she laughed and said she had a policy of no romantic or physical relationships with her patients!! 

Questions to Ask the Surgeon

Sleepless nights abound for the past few nights. Mostly because of the whirlwind of thoughts swirling around my head. I've found that my therapy is to put those thoughts out of my mind and into my blog. So probably most of the time, the posts are mostly a uninteresting, unintelligible mix of disorganized thoughts.

Over the past few nights I've been trying to assemble the questions that I want to ask the cardiac surgeon when I go to visit with him next week. It started out with just the things that came to mind to me, then I started looking online for other lists of questions to ask a surgeon. As you can imagine there are a ton of different sites that have plenty of questions, so I added the ones that I thought were relevant to me. In the interest of sharing I thought I'd write a blog with my question list so that I would add to the overall body of knowledge.

Here goes:

Questions to Ask Your Cardiac Surgeon

About Surgeon

• How many aortic valve replacements have you done? 
• What has been your success rate? Do you know about long-term success rates? 
• What area do you specialize in? 
• How many total heart surgery procedures are done at your hospital each year? 
• What is the overall mortality rate at your hospital? 
• What type of certification(s) do you have? 
• Do you, your team and hospital take my insurance? 

Alternatives to Open Heart Surgery

• What options are available in Bremerton? 
• What options might be available at in Seattle at VM or at Swedish? 
• What are the Risks, known effectiveness/record/longevity of the surgery that you are recommending?  
• Cardiologist’s description of newer methods. * 

Mechanical vs Bovine Valve

• Ongoing coagulation monitoring / management. 
• Likelihood of advanced procedures being available in the future to swap out bovine. 
• Deterioration of bovine valve in later life comes with similar symptoms to mine now? 

What to expect on the Day of surgery

• Normal timing 
• Get there at what time 
• How long from Pre-work until going to theater 
• Time between in OR and being placed under anesthetic 
• Time from ‘under’ to surgery completion 
• Time between completion and waking up 
• What prep work will be done to my body/hair? 
• How many people will be in the operating room? 
• Who will be doing the surgery? 
• Who will be the anesthesiologist? 
• How often will my family be given updates? 
• Urinary catheter? How long does that stay in during recovery? 
• What are the possible complications during surgery? 
• Will I need to fill out paperwork to suspend my advanced medical directive? 
• What happens to the valve tissue that is removed? 
• Can you take photos of the procedure for me? 

Recovery

• How soon can my family see me? 
• Can I have company overnight? 
• Estimated s duration of stay in hospital 
• What medical home-help requirements will I require? 
• What are the time estimates before returning to: 
• Being up and about in hospital 
• Walking (for as much as I amble) 
• Lay on side or front 
• No longer need assistance with daily life 
• Returning to Work 
• Driving a car 
• Having Sex 
• Feeling ‘normal’ 
• What will the pain management be during recovery. 
• What type of record keeping will I need to do (blood pressure, coagulation metering, etc.) 
• What doctors will be involved during Post op/Recovery in/out of the hospital: 
• Who? 
• How often? 
• Dietary restrictions during recovery? Low salt/extra fiber/prune juice? 

Post recovery

• Emotional support requirements 
• Post op visits (on going) 
• Dentist /strep throat implications 
• Long term lifestyle restrictions? 

Specific Concerns<Whatever concerns might be personal between you and surgeon>

* My cardiologist was not very enthusiastic (at my last visit) about the newer surgical methods. He noted a few of his recent patients who went off to Seattle and even to the Cleveland Clinic (top rated Cardiac facility in the country) and ended up with bad outcomes from the less invasive methods.