Tuesday, May 3, 2016

About Recovery…

Ten Weeks Out & Doing Great:

Well as I write this tomorrow will be 10 weeks since surgery. On the whole I am feeling really pretty good. The biggest everyday win is that I have more energy than I think I have had in 10+ years. I genuinely feel much better than I did before the surgery. Enough that it is really noticeable. That would be great but the even bigger win is I have not had any symptoms! I have not really gotten my heart rate up too high yet (so I am holding off on declaring victory), but so far I have been totally symptom free.

The incision has healed completely and I am now a member of the "cool scar" club. All of the reading I did in advance said that 80% of the healing takes 6 - 8 weeks but you won't feel 100% for 6 - 12 months afterwards. So far I have to say that seems to be accurate in my case as well.  A big sneeze or cough is still probably the single biggest source of discomfort I have left. It sort of feels like when you have had a bad chest cold for a few weeks and it hurts to cough (plus a little bit more on top of that). Not as bad as it was back in the beginning but still quite unpleasant.

The only other significant challenge has been sleeping. I am a side sleeper (pretty much involuntary) so even if I go to sleep on my back I wake up on my side. Which meant I would wake up many times during the night uncomfortable / in pain. However, this too has been improving. In the past week (9 weeks post-op) it really has been getting better and I have even managed to sleep through the night once.

The only other data point to add is something that I did not read or hear much about before surgery and that is muscle pain. I have certainly been experiencing my share of just plain old aches and pains. Occasionally pretty severe but usually just on the "annoying" end of the scale. Best I can figure is that surgery and healing stretched and re-arranged many of the muscles on my chest and back. So that, plus all the awkward positions caused by the discomfort in my sternum are causing the pains. I do expect that they will get better. But, every so often it really is noticeable how stiff / uncomfortable to move it is.

So I feel that I can safely say, that while your milage may vary, myocardial bridge unroofing + bypass surgery is doable (although it is a big deal and not to be taken lightly). And, most importantly, things on "the other side" of the surgery are significantly better.

Bottom line for me at least: it absolutely was worth it.

Lessons Learned & Advice to Others:

I thought it might be good to remark on some of the bigger or more interesting things I learned during recovery. So here are a list of things I wish I knew before, stupid things I did that I recommend not doing, and some things that worked well. There is no "order" here and sorry if some of the pictures are a little "strong" but I am sharing them so other's will hopefully have fewer surprises than I did.

The Chair:

My home for the first month of recovery
Earlier I mentioned that a lot of people posted that they highly recommend having a recliner for the first weeks of recovery. I completely concur. Make sure you have a comfortable recliner if it all possible. Preferably one that you can sleep in easily. I did not have one but it was not too hard to find a medical supply company that would rent me a "lift chair" recliner. 

Turns out renting that chair was probably one of the best things I did as I pretty much lived in it for the first month of my recovery. It was great for me because for that first month it hurt to lie down on a bed, hurt to move once I was there, and hurt to get up again. A traditional bed (even with pillows) was just not going to work. The recliner was great because it was powered and that made it super simple to go from sitting normally to the closest to flat I could tolerate at any point (which in the beginning was not too much).

So, I hung out in it during the day and slept in it at night (narcotic painkillers helped with the sleeping). I got especially good at building a "nest" of sort with blankets and pillows for the night. 

The only extra piece of advice I have is make sure that if it has a built in head rest make sure that it is comfortable for you. Mine had one but it hit the top of my shoulders if I just reclined normally. This would cause back and shoulder pain in the morning if I did not slide down a bit first to make sure it correctly aligned with my neck. 

Medications:

I know I was just hopelessly naive but I did not realize how many medications I would have to take upon getting home and the schedule that would go with it. I came home from the hospital with something like 3 pages of drugs and instructions for how to take them. Girlfriend did an amazing job of figuring out the schedule that met all of the medical requirements but it really was a mess. I, of course, was no help at all as I was on painkillers for that first month and focusing was not really something I was particularly capable of. 
The good news is that the amount of medications I had to take tapered off pretty rapidly and right now I really am only taking a single pill as a result of the surgery. But, at the height of "the drug phase" there really were quite a few of them. The picture on the right is of the basket that we used to keep all the bottles, interaction slips, and instructions together. Not shown are the three daily pill boxes it took to keep a day organized. 

Complications:

I don't know if you can go through something as significant as open heart surgery and not have something not go perfectly to plan. To be clear all the stuff I really care about went significantly better than planned (zero problems during the surgery, no bypass machine, no transfusion, home after 3 days…) but there were a couple of things I want to mention so that others are aware. 

First, is constipation is the enemy. Narcotic painkillers, which for me at least were essential for the first weeks home, have a constipation as a very common side effect. I did not think too much about this and did drink water and took medication to combat it but was not "focused" on it. That was a big mistake. During my 5th or 6th day home my pain was getting bad, around a 5, and worst is that the pain killers were not working. That night was one of the worst I had experienced since surgery. Pain around a 7 or 8 and nothing was working. I could not sleep and was really really miserable. 

Turns out that when you have had open heart surgery your chest really hates pressure. Any pressure. And constipation starts pressure in your gut but it quickly pushes higher in the chest cavity and that is OW, big time. 

So my advice is drink more water than you think you need: 16 oz. whenever you think about it. And. eat carefully too. You will save yourself a whole lot of pain. 

Going into surgery I was a little bit worried about the Coronary Artery Bypass Graft (CABG) that they were going to do. A couple of the blogs I had read, and something that the surgical team and Dr. Schnittger mentioned as well, all said that the CABG site bothered patients more than the median sternotomy did. Apparently, the graft site (the leg in my case) really was supposed to be very uncomfortable for a good amount of time after surgery. This concerned me. 

So as I mentioned in earlier posts after the surgery I paid attention to how my leg felt. Honestly, it really did not hurt, rather it just felt a "bit off".  But, not really even that bothersome unless walking on it. Walking did hurt a bit (like a mild sprain) but was not anything super serious. So when I went home from the hospital I was not very concerned about it. 

I did notice shortly after getting home on the first day that it was actually pretty numb. I had no real feeling in the skin on the front of the leg from just below the knee to just below the ankle. Basically, the leg felt like it was injected with Novocaine. It turns out that the vein that they harvested for the CABG is right next to the nerve that transmits feeling from the front of the leg. So when my vein came out it clearly made the nerve "unhappy". In the grand scheme this probably is a good thing as it meant that my CABG site has never really been a pain problem for me. Even today I still don't really have much feeling just below the knee and none around the ankle. 

So a numb leg was one aspect. But, what I was really not prepared for with the bruise. When the vein was harvested clearly there was something that was connected to it that did not get closed off too quickly. This was my leg on February 4th 5 days after surgery. 
I have been told that the swelling and bruising is atypical. And, I know this because, it unsettled me enough that I called the surgeon's office and sent them the picture. (you can faintly see a red line on my leg in the picture - I drew that when I was mapping out the area where I had no feeling.) 

Of course, this all healed just fine, as witnessed by this after picture I took today, but it was something I wish I knew about before hand because watching my num leg start to look like something from The Walking Dead was "disconcerting" without foreknowledge of what was going on. (Again, your milage almost certainly will vary). 




Summary:

During the time from October 2nd 2015 until today May 3rd, 2016 I have been on a journey unlike any other in my life. And, I know that it is not quite over yet…

There are still more things left to accomplish (cardiac rehab, lifting more than 2 lbs, sleeping consistently …). There are open questions: 
are the two untouched myocardial bridges going to be an issue? 
Was enough of the LAD unroofed to be successful in permanently eliminating my symptoms? 
Many more…

Yet, with all of that I really feel like the bulk of this journey is complete for me now. I feel better than I have in a long time. I can clearly see both the end of recovery road; and, the beginning of the post surgery one. 

Really, I feel just like any other guy (albeit one with a cool scar) whom has just learned a whole list of new things. The top of which is to appreciate today and focus on the things and people that matter most. (I know it is totally cliche, but, that does not make it any less true.)

I hope people out there reading this blog have found the information here-in useful (at least a little bit.)

Lastly, I want to offer to pay forward the immense favor that was offered to me early on in my journey. If you would like to talk to someone who knows what it feels like to be on a myocardial bridge journey: I would be honored to try and help.