Eric's Posts

First, thank you to everyone that commented to my most recent journal entry. It means a lot to hear from so many friends, family, and colleagues. Short version: The great news is that I did not have any blockages and no immediate need for an aortic root replacement. Longer version: Thursday night my cardiologist called me to let me know he had spoken directly with the cardiac interventionist/surgeon that would be performing my procedure the next day and they reviewed a number of scenerios and agreed on how each one should be handled. I felt reassured about the choice to have the current hospital complete this next step. Early the next morning a nurse walked into my room and explained an ambulance would be arriving to take me to another hospital for the procedure. I think I turned ghost white and once again I had someone in front of me thinking, 'Oh Sh@t! I thought he knew this already.' She then calmed me down and explained they do the procedure in the hospital I was staying, but if there is any chance I would need open heart surgery, that team is at the other hospital. All of this made sense now, but I wish someone had explained it to me the day before when I was making these choices. Later that morning, the ambulance crew showed up at my room ready to take me to NorthShore Hospital in Evanston which was 11 miles away. The crew was really nice, but it was odd getting carted off to another hospital only to come back to the one I was currently staying in. I felt like I was taking Uber for hospitals. We arrived at the other hospital and they got me all prepped for my procedure. Around 12:30pm the surgeon came out to the surgical prep room and said, 'You must be Mr. Rovin, Dr. Stone's friend from the Cleveland Clinic with the valve repair' After that, I felt very comfortable since not only did he talk to my doctor, but he actually listened and internalized the information. We then talked briefly about the procedure and he answered any questions my wife, dad and I had. He then disappeared to the procedure area. A couple minutes later I was wheeled into the procedure room and transferred to the operating table. On a side note, who do these people make the surgical tables for, it feels like you are laying on a balance beam, but I digress. The team in the room explained each step before they proceeded so I would remain calm. Finally, the doctor came in and started the procedure. Unlike the procedure at Cleveland Clinic, I was awake throughout this one. I was able to see and hear everything happening in the room. There were a number of monitors in the room for my vitals, but the coolest monitor showed the arteries in my heart in real time. The doctor explained everything I was looking at and whether it was good or bad. To my surprise, everything he said was good! He then closed up the small incision with some pressure and bandaged me up before he left the room. His crew then took me back out to the prep area. The doctor came out a few minutes later to officially let me know the good news. He explained the nuclear stress test is considered a screener which is designed to over identify, in other words give false positives so it does not miss anyone in need. I smiled because I often say the same thing to people I work with about the screeners we provide. He said he did not know why it gave a false positive for me, but it did. He then went on to say he only measured the aortic root to be 4.3cm as opposed to the CT and MRA which measured it at 4.6cm. If it truly is 4.3cm, then I do not need to worry about my aortic root yet. I would ideally like it to last until they need to replace my valve so I do not have to have more open heart surgery than needed. Now I have to figure out if an angiogram measurement of the aortic root is more accurate than an MRA or CT scan. A few minutes after the doctor left me bedside, an ambulance crew showed up and took me for a ride back to my original room. Once back in my room, I had to lay flat on my back for four hours while the incision sight healed. I was thankful to have Netflix to help me pass the time. About seven hours later they discharged me and sent me on my way. It felt amazing to be back home with Justine and Sabella. Since Sabella was sleeping when I got home, she did not know I was there until the next morning. When I finally saw her awake she gave me the biggest smile and happy cooing sounds. This alone made all the poking, prodding, stress, and nervousness worth it so I could spend more time with Justine and her. Next week my cardiologist will meet with me to review all of the findings and make a game plan for where to go next. Regardless of the plan, I will likely be making a trip to Cleveland Clinic over spring break or this summer just to make sure nothing is missed. Thank you again for supporting me on this journey. Eric

I was not planning to write another update until I was five years out from my OHS. Well, plans change and I am rolling with it. I have been a good patient by visiting my cardiologist regularly, getting my echocardiograms, and taking my meds on a regular basis. Also, life has been pretty good to me and my family over the years. So why am I writing this post? Well, when I started this journal it was because I made a commitment to myself to be open about my experience and tackle my CHD head on with the support of others and also provide support to others along the way. It is easy to feel alone on this experience and I refuse to feel that way. Also, I find writing this journal helps me sort through thoughts and emotions. About a month and a half ago I had a routine echocardiogram done and followed up with my cardiologist a week later. I was expecting a good visit, but that was not the case. My cardiologist alerted me that when I had OHS in 2012 my aortic root was at 4.0 cm and the most recent echo showed 4.6 cm which meant it was expanding at a fast rate. He then asked me to get an MRA (MRI with contrast) since echocardiograms are known to be inaccurate for this measurement type. So I scheduled the MRA for the first opening two weeks later. This past Tuesday I emailed my doctor and asked how I did on the MRI. I got an email response asking if I could meet him in his office the next morning at 8am. You guessed it, this made my heart race and of course I would be there. I arrived at his office and of course I was not on his schedule because he works at a totally different office on that day of the week. After searching, they found out he came in just to see me and then he would head to his normal office. We sat down and he performed his normal exam followed by telling me we needed to have a serious talk. He showed me all the previous testing (I knew he was making a case for something) and then reviewed my new testing. He even took out grid paper and diagramed Eric's 2012 aortic root and his 2017 aortic root. The testing confirmed the root was expanding much faster that predicted. For those unaware, it is common for people with bicuspid valves to have a weaker aortic wall which can expand and ultimately tear or burst. The conversation was very mutual and we discussed a plan of attack. Great, we had made a plan for me to goto the Cleveland clinic in 6 months to be reevaluated. I was getting ready to leave and he started asking me some routine questions he needed to close out the visit on his computer program. I then mentioned I had been experiencing indigestion more frequently than normal. Oooops or bingo, your choice! He instantly went into high concerned mode and poopoo'd any excuse I made for the indigestion. He then thought out loud for a minute and then said he needed to rule out an acute cardiac issue meaning I needed to goto the closest hospital ER. He then told me what to tell the ER doctors and made sure I had his cell phone and to demand they call him (he does not have rights at the closest hospital). I got to the ER and they did their workup, I dropped my cardiologist's name and stated what he wanted them to do. They told me typically they would have sent me on my way based on my workup, but they would admit me since my doctor thought they should. They then ran a CT, nuclear stress test, and and echocardiogram between yesterday and today with the intention of sending me home this evening. All day today, nurses and doctors were asking if I had been released yet even though the stress test results had not come back. In other words, everyone thought my doctor was being overly cautious! This evening I had the hospitalist show up in my room and start the conversation by saying, 'I assume the cardiologist has been here to explain the results of the stress test?' I said, 'not yet.' His face then went blank and I could see him thinking, 'Oh Sh@t!, what did I just get myself into?' He then stated they saw an ischemia and they thought they would keep me another day to do an angiogram. What?!?!?! I was not ready for that one especially from anyone other than a cardiologist! He must have felt caught of guard especially when I started asking very specific questions as if I knew something about cardiac medicine. Long story short, I wanted to be transferred to Northwestern University Hospital or Cleveland Clinic, but due to some other variables and tomorrow being Friday my own cardiologist and I agreed to have it done where I am currently staying as an inpatient as long as he has constant communication with the cardiac interventionist during the procedure. Yes, my cardiologist is absolutely amazing and believes he has the privilege to micromanage all other cardiac professionals which in this case may have saved my life. My reaction would have been different just 1 year ago, but now my wife and I have a 21 week old baby girl. I am trying to ensure a happy life for her with me in it for a long time to come. A year ago I would have checked myself out and driven to Cleveland Clinic for this procedure, but that is not realistic now. If I need OHS then yes, CC it is! I am used to having my whole family with me at the hospital for procedures like this, but this time someone will need to stay back with our baby. Also, my work family was going to be throwing my wife and I a baby shower tomorrow and I just got back to work full-time this past Monday after a wonderful paternity leave. Timing could not be worse! Thankfully I am surround with caring family, friends, and colleagues. I will now take my own recommendation from previous journal posts and start focusing on my recovery. Thank you for listening and hopefully I will be updating my journal sometime soon. Eric