Speed...

Day 1: Settling in and moving forward

After having to leave the ICU so quickly I guess I either got lucky or the staff took some pity on me (probably both) because I was wheeled from the ICU to a single bed room! It was such a relief to go from the ICU which I found to be quiet and somewhat restful (which is absolutely not what I know ICUs to be like – a difference probably explained by the fact that the only time I was really awake in the ICU was the middle of the night) to a room that was equally so. After getting into my new bed (no small effort) once again requiring some serious sweating, I managed to drift off and get some sleep all the way until 6:30am.

Now since, I got evicted from the ICU so early in the morning nobody had the chance to call girlfriend to let her know that I had left. So she arrived at the ICU right at the beginning of visiting hours which was unfortunately right in the middle of getting the new patient whom took my slot settled in. So she had to wait awhile before she was allowed back into the room I was assigned only to find that I was not there anymore. Minor SNAFU that was quickly remedied. 

Eventually girlfriend got directions to where I was. It was good to see her smiling face that morning for lots of reasons but, honestly, one of them was that she had my iPhone. (A really good thing as the withdrawal was starting to get bad.) So along with getting to see girlfriend, and get my phone back, the rest of the morning of the first day was spent with the usual hospital things: rounds, shift changes, morning work-ups, meds, etc… 

In fact the entirety of the rest of the day was equally predictable. I got out of bed for a wheelchair ride down to x-ray. Had more visitors – Dr. Schnittger, Dad, plus a bunch of friends. Sat in a "real" chair for a little while (which was supposed be a pretty big deal but was pretty anticlimactic since I had gotten myself into a chair twice already by that point). And, of course, finally got to eat again which was great. The food (despite a poor appetite) helped energy levels quite a bit.

Pain on this first day was certainly there but was pretty well managed between the block and some occasional narcotics. I guess the best summary of this first day was that it was about celebrating the successful surgery, visitors, and starting down recovery road.

Day 2: Pain and Unplugging

If the first day was about getting on recovery road the second was about disconnecting and dealing with pain.

Although no-where near the misery of the first night post-op the second night was still pretty rough. As day one became day two the pain at the surgery site just started increasing. I soon ran out of comfortable positions, spots, or anything I could find to get some relief. Everything just hurt. 

First post surgery selfie.

The pain management team was good about checking in and doing what they could. Their strategy was to give me regular boluses of meds on an interval. The goal was that the pain would just be starting to come back when it was time for the next bolus. Unfortunately, for me, this was not working as it was coming back well before the next bolus could be given. So I sort of found myself "losing ground" near the end of the cycle. All this meant that by morning of the second day I was not a very happy camper.

Narcotics would help with the pain before the next bolus but the block was far more effective. Clearly a new approach was called for. So the pain team, after talking with my caregivers, decided to switch from boluses to a constant drip which would keep the medication level consistent at the block site.

The switch took most of the day. The decision was made in the morning and it took about 10 hours plus one more smaller bolus (sorta to give it a final kick) to get everything to a good place. But, once I was over that hill the rest of the time with the blocks went perfectly. No real pain in my chest at all and no more pain cycles.

There were other major milestones that I managed to clear on that second day too. After open heart surgery they leave some tubes inside the chest cavity to drain fluids away from the surgery site. I had two of them and in the afternoon it was time for them to come out. Many of the blogs I have read talked about how the tubes "felt weird" or were uncomfortable. I don't know if it was because of the nerve block or some other reason but I was never really even aware of mine. I knew they were in there, because they were supposed to be, but I was not really "feeling" their presence.

Removal was straight forward and certainly felt strange but was not really all that painful. Sort of a burning sensation, with a quick sting, that went away in a few seconds. Once they were out it was much easier to take a deeper breath. I think the chest tubes being out gave me another 500cc worth of lung capacity before my chest would hurt.

The other "big" removal of the day was the dressing on my incision. I could see the surgical site for the first time. It actually was not as bad as I was prepared for. Five inches long with no staples or external sutures. In many ways it just looked like a big cut and it was a cut that was healing nicely to boot.

The rest of the second day was filled with the same events and happenings as the first; plus, some other stuff. Lots of great friends visiting, tests, meds, and just generally monitoring my condition. But, I also was able to get out of bed and walk around the floor a bit. And, both Dr. Schnittger and Dr. Boyd dropped in to check on me and gave me a chance to ask questions again. (Which was great since I was not as drugged and had a much easier time remembering their answers).

On the whole day two was another day of solid progress. And, just as I was sort of reflecting on all this the nursing shift changed and my new night nurse, after introducing himself, mentioned that I might be going home tomorrow…

Day 3: Done

I know there is a big concern that hospitals in the US are pushing patients out the door too quickly. Rushing them home before they are ready and thus adding some risk to their recovery or their health. And, honestly, the first time I heard that I might be discharged only three days after undergoing open heart surgery that was where my head went. It made no sense: I was supposed to be in the hospital for five to seven days not three.

I thought about it that night. On the plus side I basically was not really hooked up to anything anymore. I had an IV that was not being used, two catheters for the blocks, and heart telemetry. I could get into and out of bed, get into and out of a chair, and walk around. (200 - 400 feet anyway). From a functional perspective I had to agree I could go home. 

But, I was really concerned about pain management. Up to this point I was relying pretty much entirely on my blocks for management of the pain. Early on the morning of the third day the pain team had been by and had removed the catheters for the blocks. I was pretty nervous about this since I was basically relying 100% on them for management of the chest pain. And, after my experiences the first night in the ICU I knew how badly it could hurt and really did not want to go through that again. But, the catheters can't stay in very long because of infection concerns and it was time for them to come out. So with the block lines gone (a completely painless event) I was both able to have my back scratched again (the tape used to secure the catheters really itched) plus I started taking pain pills for the first time.

That morning of the third day was the first time I had even tried any pain pills. The first pills were strong stuff and worked pretty well for the most part but they still were not quite "enough" for lack of a better phrase. With pain levels of ≤ 3 I could relax and sleep. With just the initial pills the pain was usually in a range of 3 to 6 averaging around 5. Too much to really be able to relax.

So later in the morning, after consulting with girlfriend, I pushed back and said that I was just not comfortable going home until we had a better pain management strategy. I really wanted to go home (very much) but was just not comfortable that it would work out yet. 

The doctors were great and listened to my concerns and agreed that going home would wait until we had a better, and proven, pain strategy. Plus, they also wanted me to have successfully climbed some stairs (I live in a 3 story townhouse so negotiating stairs was a must for me).

With new, and clearly defined goals, it was pretty easy to develop solutions. My morning nurse suggested another drug to "stack" on with the original pain pills. This worked really well. By 11am it took the pain that was ranging from 3 - 6 down to a 1 - 4 with the majority of the time hovering around 2. Certainly something I could sleep and rest with. 

And, around 2:00pm physical therapy showed up and gave me techniques and the "do's and don'ts" of climbing stairs with a broken sternum. A practice session later and the last hurdle was cleared. 

By 3:00pm it was clear I was going home!

The rest of the day was discharge instructions, prescriptions (almost 10 of them), and a heroic level of effort by girlfriend to secure all of the medications before the only pharmacy my insurance would cover closed. (Weekend hours as it was Saturday).

So at 5:00pm on Saturday February 20th, 75 hours after being wheeled out of surgery, I was being
wheeled out of the hospital to go home!

That car ride home, holding tightly to my "sternal precaution pillow", was one of the best car rides I have had in a long long time.

It's Party Time!

Twas the night before…

Well, I don't think it is hard to imagine how difficult it is to sleep the night before open heart surgery. And, I am proud to report that after conducting extensive research in the area (one night) the hypothesis is confirmed. Before they crack your chest open with a overpriced skill saw it is damn near impossible to sleep. But, beyond the "normal" amount of worry I was also dealing with some pain from the installation of the catheters for the block from the day before.

In the last post I mentioned that they had been bugging me all day; and, that pretty much was the way it was until I got prepped the morning of surgery. Best I can figure is that inserting the two catheters (plus the saline and x-Ray contrast injections to confirm placement) through the muscle into a tiny space where the nerves from the chest connect to the spine irritates those nerves. And, since these are the nerves that communicate pain from the front of the chest, it felt just like my chest hurt. (for comparison: it is not as intense as the actual pain from the procedure – maybe 30%)

To be clear, despite hurting for over 12 hours and really not being able to sleep / be comfortable, I am a huge fan of paravertebral blocks. I can personally attest that when they work (and are managed effectively) I was significantly more comfortable than with the oral meds or IV narcotics. All without any of the downsides of the narcotics to 'boot' (and the 1980s definition of 'boot' is the most appropriate here.)

So, I would take the night of discomfort I had in an instant vs. not having the blocks and their relief post-op. (The real upside is that the discomfort made me very glad to get to the hospital at 5:15am because it meant that I finally could get something to stop it.)

So when it was time to get up and "wash" I hit the surgical pre-wipes quickly and was ready to go well before we needed to leave. 

Pre-Op:

The pre-operative experience went totally as expected. I showed up at 5:10am registered with the desk (same great crew as the day before for catheters insertion) and was shortly camped out on butcher paper. Everything was the same as before except I did notice one difference: my prep-bay had a little blue "surgical shave" handwritten sign. (As soon as I saw it I immediately started itching for some reason.)

Turns out a "surgical shave" is as aggressive as it sounds. Below my neck I have one tuft of hair left on my kneecaps plus some mottled patches on the arms. But, that is about it. (Respect level for my female friends has been appropriately increased.) 

After the shave came the relief from the catheter placement I was hoping for. The pain team arrived and graciously gave me a full bolus dose of Bupivacaine. Within 15 mins all of the discomfort was gone. Along with it went much of the sensitivity in the center of my chest. Huzzah! This gave me real hope for pain management after surgery which was great to have going in. 

I was one of the first patients lead back into pre-op and by 6:15am the whole bay was really jumping. There were patients getting prepped, patients waiting with their families, and the hustle and bustle of the surgical teams collecting their charges to wheel back to an OR.

By 7:00 the pace really had slowed down and the room was nearly empty: but, I will still there. Turns out that my procedure had been pushed back behind an emergency case that came in the night before which was just finishing up in the main OR. So I had to wait until around 9:15 or so before they were ready for me. Of course it increased anxiety having to wait longer but, honestly, I was okay with it. I was comfortable and was enjoying passing the time with girlfriend and catching up with my dad.

So when the anesthesiologist showed up to give me something to "get ready" to go back I did not think about it much at the time. I asked what I should expect to feel and he mentioned it would feel like a few drinks. Sounded interesting to me....He injected my IV line and I remember feeling a slight rush followed shortly by a much bigger fuzzy wave. 

I distinctly remember saying as the wave arrived something like: "Yeah, that really does feel like a few beers!" after which point I have got nothing…

Surgery:

I have been told that after the drugs kicked in I got really smiley, happy, and clearly "out-to-lunch" while we said goodbyes. All I can say is that either:

1. My dad and girlfriend are the best kind of people in the world because they did not video this …or…
2. They are really good liars and I just have not seen said video yet.

(I am really hoping for option 1. Although, dad is an attorney…)

After getting wheeled back there was around another hour of preparation. Where I had a bunch more lines inserted. Lines that I am actually very glad not to be able to remember getting.  I gained an arterial line in my left wrist and an IV in the back of my left hand. I also an got IV inserted in my neck. All, told I had 3 IVs (both hands and neck) and one arterial line.

The surgeons got to work around 10:00 that morning. And, first up was the unroofing of the LAD. This apparently went very well and they were unable to uncover much of the artery. As expected, not the whole 8cm, but enough that hopefully it won't be causing more issues. The LAD bridge really was very deep and at one point while unroofing a section of it that section expanded significantly
– having been freed from 46 years of encasement. (Given the way it was explained to me the best analogy I have is: think about a sleeping bag rolled up in it's sack. Then cut the sack the long way along one side. It does not unroll but it does expand without the sack to hold it tighter. I think it was sorta like that but more uniform of course.) 

Next was to apply the graft from my leg (that was the final choice: preserving the radial and LIMA for use later if necessary) to the Ramus. The goal was to do that after unroofing the Ramus but apparently after actually seeing my heart the Ramus bridge was determined to be just too physically hard (plus risky) to attempt to unroof. So because that bridge was very short anyway, and very close to the plaque it was influencing, they just bypassed them both.

All of these procedures required me to be on the table for about three and a half hours. But, what is even better than the shorter surgical time is that it was all accomplished without heart / lung bypass or even any extra blood! (A major heart surgery without a single drop of extra blood performed on a 100% beating the whole time heart certainly was not the expectation – and I am very grateful that it was not required.) 

So around 2:30pm or so in the afternoon I was wheeled into the ICU.

Waking in the ICU:

I remember "dreaming" a little before "waking up". Apparently, before I think I was awake,  I asked the same set of questions over and over for a little while. Things like: "what are my O2 sats?" or "how did it go?" (Honestly, I think girlfriend and dad are just making this up. **I** remember everything from the ICU clearly – and I don't remember asking those questions at all.) 

As the haze of the anesthesia wore off, and after family had to leave, I do remember thinking: "Hey, I made it…I wonder if everything works?" So I conducted some experiments: I remember moving my arms a little with no issues. I moved my left leg with no pain. But, moving my right leg really did not feel quite right. Did not hurt, but did not feel great either. Okay. No serious problems there.

Then I went for broke and focused on my breathing. First off, just breathing did not hurt. I felt like I was breathing fine and since I was not intubated was able to control the pace a bit. I did notice I was taking multiple, and rapid, shallow breaths. So I tried to slow down the pace and breath deeper. I succeed in slowing the pace but not in breathing deeper. The reward for this combination of success & failure was a rather serious alarm from my O2 monitor. Okay, got it: I was balanced right on the edge of normal / caution oxygen saturation. 

Last, it was time to try and take a deep breath. Now, I have to assume that a "deep breath" to me back then is not even close to a "deep breath" even now (1.5 wks post op). But, regardless I did accomplish what I felt was a reasonably deep breath. The reward this time was predictable – OW!  Okay, so they really did do the surgery.

But, that pain was not as severe or as "Oh CRAP" as I had expected, or prepared, myself for.  And, that was the first moment I started to believe that it was really going to all be okay. I could do this. Everything serious seemed to be working and, at the very least, the pain could be managed – I just had to avoid doing stupid things (more examples of stupid things in later posts).

I think all of this would have taken place around 6:00 pm or so. 

As the evening went on the pain started to grow. The bolus of Bupivacaine I had earlier was wearing off. I mentioned to my nurse that I was starting to hurt and she told me that the pain team delt with the blocks so she could not help there. But, there also were orders for IV pain medications too. So we decided on paging the pain team and trying the narcotics as a bridge until they could arrive. 

I will spare everyone the specific details of the next sequence of events and rather just summarize them here:

1. After surgery I was still "nothing by mouth" so no water or food.
2. Pain medication, especially strong narcotics, can make you vomit.
1. This is worse if your stomach is empty.
3. Anti-nausea drugs work really well but there is a delay between giving them and when they start working. Plus variability in how long they last and their overall effectiveness.
4. Hospitals have you rate pain on a 1 - 10 scale. With 1 being very mild and 10 being the worst pain of your life. During my previous 46 yrs on this planet I never really had a solid clear winner for a level 10 pain experience: I do now.

By 1:30 in the morning everything settled down. The block had been re-bolused and was working well enough that previous few hours' "narcotic --> vomit  --> anti-nausea --> repeat" dance party was done. I was finally feeling pretty good…

…and that is when the nurse came in and told me that I would be moving soon. With a value of soon measured in hours not days. Wait…what…moving soon! I was just admitted to the ICU sometime around 13 hours ago. I was supposed to be in here for one or two days not 13 hours.

Turns out there was another emergency surgery underway and that patient was going to need to an  ICU bed. And, since the ICU was full that meant the healthiest patient in there had to go; and, that patient was me. 

I was not thrilled since after my "dance party" I just now felt the ICU staff / pain team had just figured out how to make me comfortable. But, I trusted the IICU (cardiac care wing) would be able to do the same thing. The only other added wrinkle was that the ICU did not want to give up it's bed (other patient arriving too soon I think) to transport me so they were going to put me into a wheelchair to move me.

So approximately 13hrs after surgery I was sitting up, getting out of bed, standing, turning, and sitting down again in a wheel chair. It does not seem like much…but, I have raced crew at the university level before so I know a little about exertion. Crew taught me what it was like to go 120% all out in every race, pass out crossing the finish line, loose 3 lbs in just sweat during a race, and work out 5 hours a day. Crew takes real effort but...

…I think that was easier than just getting up and moving myself to the chair was that night. I was exhausted, sweating profusely, dizzy, hot, and nauseous after just that simple activity. But, I did it!

This was only the first of many "accelerations" my post-surgical hospital course was going to take. More on those in the next posts.

Echoes, Swedish Doctors, and Open Heart Surgery

Finally: I Get into The Echo Lab

Up to the end of October I had never met anyone at Stanford that focused on bridges. The cardiologists I was working with Dr. Mahaffey, Dr. Rodriguez, and Dr. Yeung (all excellent and fantastic) were not bridge experts. But, I had heard "whispers" of a "bridge team" and their leader.

Specifically, I had heard mention one or two times of a Dr. Schnittger. But, did not know much beyond the fact she studied bridges and was the head of the echo lab. So I was pretty happy when I managed to schedule the Stress Echo and an appointment with Dr. Schnittger less than 24 hours after the test. 

The test day, October 29th, rolled around and at 8:45 in the morning I was checking in at the cardiac clinic desk to get registered. 

Aside: I have always been totally supportive of gathering as much data about my bridges as possible. Both, because more data is good for choosing the best treatment for me; but, also I hope that with a better understanding of severe bridges they will be recognized as a real source of problems by the general medical community. I really am convinced that not all bridges are benign. So although this test was redundant for me at this point I would have volunteered for it anyway. However, I have do admit that I was really kinda psyched that the stress echo lab is part of Stanford's non-invasive (and non glow in the dark) imaging capability.

All of the other tests I had been given involved probes inserted into my heart and/or a really big dose of x-rays or other radiation. I was tracking my exposure using the great free exposure calculator located at this link and it was really starting to add up. I will have been exposed to to about 54 mSv of radiation, which is roughly equal to 1,080 chest x-rays, over the course of this journey. (For comparison: Fukushima towns where exposure is rated at  >50 mSv/yr are "difficulty of return" and require remediation.)  

Anyway, shortly after being registered I was lead back to the lab. This room was not freezing cold (hurray) nor did it have that "hospital organized" look. It reminded me very much of a working lab. Not saying it was messy, it was not, it just looked efficient, used, and highly functional. Upon walking in I met the awesome tech whom clearly was expecting me. She told me that Dr. Schnittger was pretty pissed that this was the earliest that I could have gotten into lab. And, apologized several times, for how busy they were. (I later found out that the usual bridge diagnosis flow at Stanford starts with the stress echo and then might include some of the other tests. But, because of schedule issues and just how my case presented I sort of did the whole thing in reverse. I did the most invasive and riskier tests first rather than waiting to see if they were really necessary. Oh well, I have never been great at doing things "the right way" anyway.) 

As she was getting set up I asked the tech what the purpose of this test was and why everyone had been so eager for me to have it. I told her that from everything I had read online this test did not have anything to do with bridges. She informed me that Dr. Schnittger (and team) had developed a new method of reading the results of the stress echo and could very accurately predict the presence of Myocardial Bridges. So it was important initially to help understand if I had bridges. But, now it was still valuable as it could further prove the validity of their screening algorithm.

I was glad to be of help even if the outcome was not really going to be directly relevant to me (after all I already knew I had bridges). But, it would be great if this test that anyone can take, involves no radiation, and no surgical procedures was universally accepted.

The test itself is very simple. 

1. Set up a 12 lead ECG. Lie still for a bit. 
2. Get ultrasound pictures of the heart while lying on my side. 
3. Run on treadmill (I pushed as hard as I could and was proud that I maxed the machine out).
4. Literally jump off treadmill and hop on table on my side for another ultrasound.

Done. Simple. Non-invasive with no risk of superpowers. 

Afterward I stopped in the cafeteria, which is on the first floor right under the lab, and had a banana and black coffee to celebrate finally getting into the bridge clinic and the opportunity to speak with a world class expert on my condition.

Meeting Dr. Schnittger:

The next morning I was at the clinic (which is really just a block of schedule carved out for bridge patients in the regular cardiac clinic) 20 mins early. I really did not want to be late because I wanted as much time as I could get with Dr. Schnittger.

Unexpectedly, 10 mins before my appointment was even scheduled Dr. Schnittger's nurse coordinator came out to get me and presently I was perched on butcher paper. And, after going over a bunch of questions with the coordinator Dr. Schnittger showed up. 

Now I was really hoping to get 20 mins of her time to go over my case. I figured 20 mins was going to be pushing it given what I expected her schedule to be. So I have to admit I was totally floored when she spent well over an hour with me. She started by covering my condition. But, since I had been studying it so much already we were able to jump right into the details rather than do the whole overview – which left even more time for questions. 

But, before specific questions about my condition I had a different objective. My priority was to ask if she would take over my case and thankfully she agreed. (Dr.  Mahaffey whom was my primary cardiologist up to this point had already intimated that he thought this would be a really good thing so no worries there.)

Here is what I learned from that initial appointment:

1. The conference of Stanford cardiologists could not really agree on a clear path for me. My plaque was serious but not severe enough to require addressing. (Mine was measured by angiogram at ~60% and ~70% is the threshold). And, of course, since there is no universal agreement on bridges even being a problem there was no agreement in conference about them either. 
2. Dr. Schnittger believes there is good evidence to show that plaques caused / influenced by bridges are more brittle than normal. Brittle is bad because a brittle plaque can break or crack and then form a clot. And, plaque + clot in the LAD is the reason that the LAD is called "The Widow Maker" it's a Very Bad Thing™
3. The bridge on my LAD is one of the most severe Dr. Schnittger has seen. Oh…Yay.
4. The bridge on my left circumflex is also "bad" but not as significant as the LAD. First, because the circumflex is not as critical as the LAD and second it does not fully close the artery. So it probably is not as much of an issue.

When I asked the $1,000,000 question: "What should I do?"  I was not exactly hoping for the answer I got. It basically bolis down to this I think: It turns out there is a sorta a rating scale for bridges and only those in the highest category are clearly recommended for surgery. I am still very functional with my bridges. The people that are in the highest category experience Sedona like attacks just walking from the car to the house. That is not me. Basically, neither my symptoms nor my plaque were severe enough to mandate surgery. (Update 2/5/16: After my 2nd Cath Lab trip this changed and I become a clear candidate for surgery based on new findings – 4 bridges rather than 2. And, a second bad plaque)

However, after that bombshell, things got a little better (or more nebulous depending on your point of view.) She told me that if I wanted to have unroofing surgery she would absolutely be with me every step of the way and would completely support my decision.

But - I was going to have to be the one to push for it.

I told her that I needed to think about the surgery a bit. I wanted to weigh all the data before making such a massive decision and at that moment was just "too close" to do so rationally. So we made a follow up appointment for a month later and I thanked her for taking the extra time with me and for the open and direct conversation.

That first meeting proved to me that Dr. Schnittger is kind and supportive but also direct and candid in her presentation of the medical facts and very clear about what is "known" and what is not. A super skilled, no nonsense, personable doctor and I am very lucky she is my primary cardiologist.

Open Heart Surgery:

I had a month but it only took me two weeks. 

We have come a long way from this!

Open heart surgery is a big deal but it is not as big of a deal as it used to be. Stanford is one of the best places in the world for getting it done. I am young (ish) and healthy but as time passes the first is guaranteed to be less true and the latter is unlikely to stay the same either. So, if you assume I must have the surgery at some point in my life now is better than later.

But, for me, the biggest reason to consider the surgery is the plaque. I really do think that mine is, at the very least, accelerated by the bridge on my LAD. With such a severe bridge it is only going to continue to grow but because of the bridge it can't be treated. That makes it effectively a ticking time-bomb. I firmly believe that at some point it is going to cause a very large problem – a problem that I probably would not survive.

And, I am just not ready to check out anytime soon. 

So two weeks later I contacted Dr. Schnittger and said I wanted the surgery and was ready to do what it took to make sure it happened. 

As promised she was very supportive and we got the next required test set up. A CT scan of my heart. This would help give the surgeon a good map of where the bridge was. A map he needs to know what part of the heart to uncover and where to find the affected section of the LAD.

Bad news was this scanner (even Stanford only has a single scanner that can do such a complicated scan) was booked until December 17th which was just about a month away.

More waiting. (But, no complaining.)