Keeping the Beat

(Where is the exit??)

Yesterday I had my first comprehensive pacemaker check at Johns Hopkins, and I do not regret leaving my old hospital for a second! While Baltimore itself is a little more difficult to navigate, being a patient here is far easier. Not once was I met with a confrontational, rude, or dismissive comment, and my new pacemaker doctor is even HAPPY to talk to me about POTS!! She is knowledgeable, compassionate, and works with my POTS doctor to make sure every aspect of my health is addressed. Even the staff are pleasant! When I asked a question, it was answered. No one told me that "POTS isn't a real thing," and no one chastised me for leaving school because of POTS; in fact, my reason for leaving was accepted and even sympathized with! Not that I'm searching for sympathy, but as a Dysautonomia/ POTS patient, this is an extremely rare thing to find at major medical facilities. And I wasn't even there for my POTS! I have found my "dream team"!

The view across from the Children's Hospital 

Part of the old Johns Hopkins Hospital

 Not sure how I feel about wearing a band that says "Corporate Security"...

The tastefully decorated interior of the new Charlotte R. Bloomberg Children's Hospital (there was also some sort of abstract ostrich opposite the fish/ chicken things)

I arrived super early to my appointment (as in a couple hours early), so I did all my paperwork then left to grab a snack and get some reading done. I went back to the Taussig Heart Center half an hour before my appointment, and as soon as I walked into the waiting room, I was met by choruses of "We've been waiting for you!" by the receptionists. I was shocked, as I was still half an hour early. I waited for the nurse to come get me, expressing many "I'm so sorry!"s all the while. The nurse, a very sweet woman, came and took me back for vitals and an EKG (electrocardiogram), which is the standard procedure at every congenital heart center. Then she escorted me to a small waiting area where I was to wait to be taken for an ECHO (echocardiogram). Now, I thought this was a little strange, as I had just had an ECHO in December with my POTS doctor. I thought that these results would have been shared with my pacemaker doctor, as we try to share as much as possible and my heart defect is electrical, not structural. Then she handed me my ECHO papers to take back with me. At the top of the paper was my last name, but a different first name. The physicians listed were also different. I promptly took it back to the nurse and come to find out, the desk had me confused with another patient! She had never shown up for her appointment, which is why everyone was so flustered when I walked back into the clinic half an hour early. There were actually 3 of us scheduled that day with the same last name! 

After that mess was cleared up, the pacemaker tech took me to my luxurious exam room and proceeded to conduct the pacemaker interrogation, sans ECHO. I still have about 4.5 years left on my battery (which is AWESOME, as I have had this current one for 10 years already!!! That's a MAJOR cause for celebration when it was only supposed to last 8 years, and the ones preceding it lasted 4! I need to plan a party!) and my leads (the wires that connect the pacemaker to my heart) still function wonderfully. I am still 100% dependent on the pacemaker in my ventricle, and have had a 5% increase in pacemaker dependency in my atrium (now 35% dependent). What that means is that the pacemaker does all the work for the bottom, pumping chamber of my heart (which is common in complete heart block), and the upper chamber can do most of the work on its own, but needs help 35% of the time. Then it was time to test the leads, which meant speeding up the pacemaker and slowing it down to see when the device captured and test what my heart can do on it's own. That part kind of sucks. Each lead must be tested, both the atrial and ventricular leads. We sped up the pacemaker to about 90 beats per minute (bpm) for a few seconds first for the atrial lead, then turned it off since the atrium can do work on its own. The same procedure was repeated to test the ventricular lead, only I was allowed to lay down for the second test. This time, she only turned it down into the 30s for a few seconds, and the lead captured twice!! Hooray! One capture would have been exciting, so we can safely say the wires work great. 

I finally got to see the doctor, whom I had met once before at my tilt table test to diagnose POTS. She. Is. AWESOME! I seriously love this woman. She explained that the tachycardia episodes that are common with POTS are mostly only occurring in the atrium, which is what I have wanted to know since I saw that I was having rates over 200 bpm. This makes sense because my atrium can essentially go as fast as it wants. We actually talked more about POTS than we did about the pacemaker. She suggested that I double the Florinef (the steroid that causes water and salt retention - oh joy) because I stopped taking the Midodrine (to increase my blood pressure). She also suggested that I wait a few more months before driving, since I passed out sitting in class about 6 months ago. She was very impressed with my knowledge of POTS and the treatments I'm on (medications and lifestyle modifications). She even said I would make a great biologist! I'm a nerd I know, but that is one of the best compliments I could ever receive. YAY!!!! **Grins like an idiot**

I go back to see my POTS doctor in June, and to check the pacemaker battery again. Oh, what fun. Finally we were on our way home! We stopped for coffee, but my gift card was 39 cents short. The only other thing I had on me was a 10-dollar bill, so the cashier paid the remainder for me. There are still some truly great people left in this world! It was definitely one of the better trips I've had for a doctor's appointment, despite my brain fog preventing me from remembering to ask at least 5-10 questions that I had meant to ask. My faith in the medical system has been restored, as has my ambition to work in it as a physician. All is right with the world. 

The Bionic Sydney :)