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!" 

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.

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.