Emergency Open Heart Surgery
2018 has been an exciting year for me medically. As I'm typing this I am 6 weeks post emergency open heart surgery. Which of course is not super common for a healthy active 27 year old.
To tell the story correctly we'll have to go back to February 2018. After work I noticed a bit of swelling in my right ankle along with a red/purple small bruise. I figured keep an eye on it, rest, ice, elevation, compression. When I wake up the next morning, my foot is still elevated, but it has gotten bigger. I don't remember hurting it anywhere so I'm pretty confused.
When I go to put my foot on the floor I feel all the blood in my leg rush down to my foot which causes some severe pain. Enough that I decide to go to the walk in clinic. After I explain what I know to the physicians assistant she contacts the doctor to come and look at it also. They put me in a wheel chair and take me to get x-rays and blood tests. They explain to me they are unsure what the issue is, it is possible it's a sprain that I somehow don't remember, or much worse a joint infection in my ankle. They explain to me I don't have a fever so it's probably not a joint infection but if my temperature rises above 100 or if it becomes so painful I can't walk, that I need to go to the ER.
Later that night my foot hurts like crazy anytime I put it below my heart and my fever rises above 100. We go to the ER where I have more blood tests, a CAT scan, etc. Eventually they determine they aren't really sure what the issue is either, but they set me up with an appointment with an orthopedist.
The orthopedist also isn't sure what is causing the issue so we decide to go with the shotgun approach of treating everything it can be. I'm given a boot to immobilize my foot as well as antibiotics and steroids. Over the next two weeks this strange issue with my foot subsides and everything goes back to normal like nothing ever happened.
April 7th. This day is exciting as it is the move in day for the new Family Martial Arts studio in Enid! We take a team down to Enid and unload all of our gear, mats, computer equipment, etc. Unfortunately later that night as I stand up, getting off the couch, I feel the worst pain I've ever experienced in my life. I have this extreme pain in my back like I've never felt before, pain enough that I can't stop myself from screaming in pain. I can't find any position for my body to alleviate this pain. I try laying down, flipping over, sitting, standing, but I can't shake it. I get the idea that heat might be the way to bring some sort of comfort.
I stagger to the bathtub, crawl in, and turn the hot water on. This bring significant relief; however, I realize, while thinking long term, that I can't physically get out of the tub myself. I call Danielle and ask her to come over. She helps me out of the tub, my back is only in extreme pain now when I move. So she helps me get to bed and we cross our fingers that I'm feeling better in the morning.
Unfortunately, when morning rolls around I'm physically incapable of getting out of bed. I'm feeling extreme shooting continuous pain if I even try to roll over. Being slightly hard headed, I think that if I let it rest it'll get better. Three days later, I haven't been able to move more than a few inches and the pain is just as bad as day one. My parents say "Either we can put you in the back of the truck and drive you to the hospital or you can call 911."
When the EMTs show up they explain how they have to pick me up and put me on the stretcher and once I'm in the ambulance I can get some pain relief. When they pick me up it's excruciating, however, the morphine in the ambulance brings me the first sense of relief I've had in a while. After blood tests and an MRI the doctor says he thinks I just pulled a muscle in my back and prescribes back stretches. When I ask him how to stretch my back he replies with "You can just Google back stretches."
In the following week I am able to get out of bed with assistance as long as they don't mind my yelling, and can get around very slowly on crutches. Towards the end of the week I get in to see my primary care doctor and explain that I can't live like this. He looks at my MRI from the ER and says "You essentially have two fractured pars in your back and a slipped disk." This brings me great joy that I have a diagnosis that I can work towards fixing and that my mind wasn't just making up the pain.
Fortunately he tells me that my slipped disk should be able to be fixed with physical therapy and hopefully surgery shouldn't be needed. Over the next 6 weeks in physical therapy we work on physically pushing on my hips to pop my disk into place. At first it wouldn't move at all, then it would move a bit but return to its place once the pressure stopped, eventually we were able to pop it into place! Unfortunately it popped back out immediately, but it was a sign of progress. After about a week of popping it in and out the disk finally stayed in place. We then strengthened the muscles around it and I was told the fractures should heal, keeping it in place.
Weeks after my back pain has subsided I start to notice a pain in my left side whenever I take a deep breath. This causes me to only take short breaths. After two days or so I decide to go to my primary care doctor. After a blood test he thinks I have an autoimmune disorder and refers me to a rheumatologist.
I'm very pleased the rheumatologist is a great listener and doesn't mind me telling him the whole story of what has happened. After another blood test, he tells me that I could have 0-4 autoimmune diseases and it's impossible at this point to tell which. However, the treatment is fortunately the same. He starts me on immunosuppressants. The unfortunate thing about them is that they can take up to 3 months to take effect. During this period my breathing pain subsides after a week or two and instead I begin to feel a sharp shooting pain down my left leg (Sciatic Nerve).
It gets so bad I can't put any weight on my leg. I'm relying on crutches and others to get me around.
I'm hoping the doctor is right and its just a matter of time, but I also start chiropractic care because what else do I have to lose. This leg pain begins to subside the end of June, which is getting close to the 3 month mark from when I started my medicine.
I'm so excited because our family has a planned vacation to California to visit our relatives at a family reunion! I assumed I wouldn't be healthy enough to go, but my leg pain is going away and I'm starting to feel normal again! The week before we leave I start getting these cold chills. It's 100 degrees outside but I'm freezing. This happens 2 or 3 times in the week leading up to our trip, it lasts for an hour or so before the chills go away but it hasn't been quite 3 months yet so I think the medicine hasn't quite gotten to full effect yet. I call my primary care physician, just to be safe, and he says to call the rheumatologist, I call the rheumatologist but hes out of the country. In my mind its really no big deal compared to the back and leg pain, I'll just keep taking my medicine and it'll eventually go away.
The first day of vacation was great! Went to the beach, visited relatives, etc. However, from day 2-6 I continue getting these weird chills and I start to notice my resting pulse will jump up for 10 minutes or so then dissipate back to my regular resting heart rate. I just decide to stay in for most of the vacation because I'm generally not feeling good and not in the mood to enjoy the trip. Towards the end of the trip we make the journey from Santa Cruz (elevation 36 feet) to Mammoth Lakes, CA (elevation 9,000 feet) for the family reunion.
Once we arrive we have to climb 3 flights of stairs to get to our room. Once up there Danielle and I decide to stay in, instead of heading to the camp ground where my extended family is. My heart is beating like crazy after the stairs but I assume if I relax eventually my body will keep up. Around 2 hours later of sitting on the couch, I check my pulse. It's 130-140. I speak with my aunt who is a registered nurse and she convinces me to go to the ER. It's Thursday evening.
We explain everything to the doctor at the ER and they decide to take some blood and run some sort of scan, my memory begins to get foggy at this point. The doctor come back in the room after looking at the results. He explains that they aren't sure exactly what is happening, but the blood tests have indicated there is something severely wrong with my heart. So severe, that they can't treat it. He explains that they have already contacted the airport to get me flown to Reno NV. I recall the ambulance ride to the airport, being put into the plane, and even landing on the tarmac in Reno, but before I can get out of the plane it all goes black.
I wake up in a hospital bed surrounded by my family. They explain to me that it's Monday afternoon and that I've just undergone emergency open heart surgery. I look down at my body and notice all of the wires and tubes. They hold back the details at this point in time because they don't want to worry me, for the same reason I don't ask.
Here is what happened, as it has been told me. Once I got to the hospital I received a flurry of tests. It was determined that Strep was growing in my heart, this is called Endocarditis. Because of this, the Strep had eaten through up my aortic valve and had also eaten a hole in the wall of my heart. They also notice that I have a birth defect in my heart. A normal aortic valve has three leaflets and I only have two. To fix this they will implant a carbon fiber aortic valve to keep the pressure in my heart while it pumps. It isn't until five or six days later that I notice the audible ticking each time my heart beats.
Because of the hole and the valve my heart was trying to compensate for the lack of blood to my body by pumping faster and faster, this was the fast pulse rate I had experienced earlier. As a result of these issues my lungs had filled up with a liter of fluid which caused me to have trouble getting oxygen to my brain, resulting in me passing out.
Fortunately for me the passing out was a blessing because I don't remember going through surgery, unfortunately for everyone else unconscious Alex wasn't having any of it. Apparently I became extremely paranoid, to the point the doctors were concerned I would be pulling out IVs and be a risk to my own health. For a period of time I had to be strapped down to the table.
Standard procedure in an endocarditis situation is to treat the infection, then have surgery to fix the damage. The infectious disease doctor starts me on antibiotics but my fever continues to rise. They put my body onto an ice blanket and cover me with one as well; however, after hours my fever hits 105.4. Later its explained to me that brain damage usually occurs at 105.6. The team of doctors decided either do the surgery now or it wont matter later.
Five hours into the surgery a nurse comes out of the operating room to tell my family that the surgery has gone well and they should be done in 20 minutes or so. At hour seven the cardiothoracic surgeon comes out. He explains that the initial surgery went well, they took me off bypass, restarted my heart, and were getting ready to call it a day. Before they do that they do a TEE to make sure everything looks the way it should. During the TEE they notice that my mitral valve has also been chewed up. The surgeon put me back on bypass and proceed to put it back together.
While waiting for me to become conscious again everyone is nervous that I potentially have brain damage or my personality will be completely different when I wake up. Because we were 3-4 hours away from where our family reunion was meeting, aunts, uncles, cousins, grandparents, everyone came by to see me.
After I finally regained my awareness we began physical therapy. My nurses explained to me I needed to walk as much as possible. Getting up the first time was very difficult and after taking just a few steps I was exhausted but it was progress. The next day I made it to the door, the next day I made it through the door into the Cardiac ICU. I was excited at the quick progress I was making, the nurses explained to me that I'm progressing much quicker than normal, but that it makes sense because I'm about 30-40 years younger than everyone else on the floor.
Walking is difficult because of the 4 chest tubes coming out of me along with the catheter, heart monitor, etc. As the days move on they start removing things out of my body. By day 12 in the ICU almost everything is removed besides the line that I'm supposed to use to get antibiotics to my heart for the next 4 weeks at home. The doctors decide flying is the safest way for me to get home to avoid blood clots. During the discharge paperwork the doctors let me know that I'll return to normal life within a year, but that I'll be on blood thinners the rest of my life.
Because of this they urge me to no longer participate in any contact sports, like sparring/grapplling/takedowns, which I'm still coming to grips with; however, it's still much better than the alternative.
I'm currently 6 weeks post surgery! I have been cleared to drive and I started Cardiac Rehab at Total Health on Perkins. I'm healing better than expected and some of my doctors think that all of my autoimmune symptoms were possibly a result of this over arching heart issue. I also haven't had any autoimmune symptoms since surgery. On Monday, Wednesday, Fridays I'm walking atleast a mile and riding 3-4 miles on the bike at Cardiac Rehab.
Craig and Lauren are breaking student count records at the karate school, and my parents let me move back in with them for a few weeks until I get back to normal. Danielle has been incredibly supportive and drove me around everywhere before I could do so myself.
Around the beginning of the year I had a serious debate with myself about whether I should pay for health care this year. It cost me a whopping $3,000. I knew I should, but I didn't want to spend the money. Well, I'm extremely glad I did. Also very glad I got the plan with 0 out of pocket cost once my deductible has been hit. I still have bills coming in, but so far I'm up to around $400,000.
I am so thankful that God was and is always watching over me. I'm counting my blessings everyday and I'm thankful for my quick recovery. I’m grateful for my wonderful friends and family that have supported me the entire length of the journey.