Earlier this week, I didn’t feel well. About half way through my day on Monday I started feeling off. I was tired – not all that out of the ordinary, I was lightheaded – this was out of the ordinary, and finally I started experiencing chest pains, this was worrisome. I decided this trifecta meant it was time for me to go home. I probably could have pushed myself through all of it and made it the end of the day but, I have finally learned that just because I can doesn’t mean I should. In an effort to assure my friends, colleagues and family that I am not the same person who would push until she found herself passed out in the middle of a classroom, I am doing my best to listen to my body and stop while I am still upright. It’s called character growth people. 

Once safely home and laying in my bed I did all the things, checked all my vitals, determined nothing was “off”, and then I sent messages to all my clinics describing my symptoms. This is the actual message I sent two clinics, one to my PCP and one to my cardiac team:

 “Experiencing some symptoms today (Monday) that aren’t necessarily new but the combo is. Having some issues with intermittent chest pain (center of chest), fast beats, lightheadedness, nausea, headache and occasional dry cough. I am holding more water than usual, and my weight is up about 1.5 lbs. I assume this is the culprit, but am hoping to get a once over just to be sure, maybe check enzymes and listen to the ol’ lungs.  I left work early today as it was next to impossible to work and plan on staying home tomorrow. I have not gone to the ER because everything is within manageable levels. My BP is good (100s/60s). My heart rate is steady (70s-80s). My O2 has been 96 or more and I am keeping a close eye on all of it. Just want to double check I’m not ignoring anything I shouldn’t be.”

Does this sound  like someone in distress to you? No way. It sounds like an absolute boss who knows what she is talking about. I heard nothing from anyone that night. To me, this was confirmation that I was probably fine. Talking with MY team (my family) we agreed that everyone would feel better if I was seen before I went back to work. That would be my mission for the next day. 

I woke up feeling better, not great, I wasn’t going to go run a marathon or anything but I was feeling better. By 10 a.m. I still hadn’t heard from any of my clinics so I put in a call to my PCP requesting an appointment. Usually, this isn’t a problem. My PCP and I have a good relationship and she knows that I would rather do just about anything than come see her, so if I am calling she tries to get me in ASAP. After several rounds of back and forth with her nurses (all of whom are new or temps, her regular nurses were reassigned during the pandemic and still haven’t been given back), it was obvious that there were no appointments to be had that day, not even for me. The scheduler gave me an appointment three days away. I figured this meant my doctor wasn’t super worried. I was wrong. About an hour later I got a call from another nurse telling me that she spoke to my doctor. I was so happy, I was certain my doctor hadn’t even been made aware it was me and they were calling to tell me that she said to come in and she would work me in. I was partly right. My doctor had read my note herself and she would like me to go ahead and go to the ER.

She knew I wouldn’t like this option but she told her nurse to tell me that she knew I trusted her and that this was the best thing with my symptoms. She was right. I did not like this option. I did not like that from my perspective, she was afraid to have me in her office now that I am in more advanced heart failure. I did not like feeling as though, despite all my self awareness and charm, I am a bigger liability and charm doesn’t trump liability.  None of this really mattered though, she had already called the ER and told them I would be coming. I briefly thought about not going, there were several issues with this however. First in my mind, if I didn’t go I was not going to get anyone local to check me out in the way I wanted. I needed blood work and someone to check and make sure there wasn’t an abundance of fluid in my chest. Second in my mind, if I didn’t go would it somehow get back to the transplant team when they were trying to determine if I was a compliant patient? I did not want to lose the opportunity to get a transplant because I was being stubborn about going to the ER. I grabbed my things and went to the ER. I did not call anyone to drive me as suggested, after all this was stupid and I can do all things through spite which strengthens me. 

I’ll spare you the details of the check-in and triage though I have thoughts about how both of those could be improved. For one I was given an ECG in a waiting room (yes it had a door) but it was only being done so they could meet the STAT requirements of the test before they sat me in the waiting room for an hour. I understand they are short of staff, I get that they only have as many beds as they have staff for, but they even told me that they were doing the test so they would meet the time requirement even though I would still have to wait. It just seemed dishonest? If you have wait times, you have wait times. Don’t try to fake it. Anyway, I said I would spare you and here I am talking about it. 

An hour after arriving I am given a room, a gown and the nurses (amazing nurses) start attempting an IV and blood draw. I am a notoriously hard stick. I always admit to this. My spiel is “I’m a hard stick, I know it, I don’t hold grudges, go where you have to go and I won’t complain about it.” They always laugh like they think I am exaggerating, and then they are shocked when they cannot stick me the first, second, or third time.  This nurse only tried twice before she called in back up. In her defense my arms are a bruised up mess from failed and successful tries for IVS during the last three weeks of IV iron treatments. The second nurse came in and took his time looking and analyzing. He commented on how beat up my arms were, I agreed. Then he went for a “juicy one” in my inner bicep on my right arm. It was a weird place for an IV but it worked on the first try. I was grateful. 

From the moment the doctor walked in the door I knew this wasn’t going to go well for me. I want to preface this by saying that I do not fault any emergency room, non-specialized doctor, for not having a firm understanding of congenital heart defects or their repairs, or what treatment makes sense for them. What I do have a problem with is when they don’t listen to the words coming out of my mouth, won’t admit they don’t know what to do, or consult someone who can help them better understand. That my friends is what is called a dangerous situation, and on Tuesday for a bit of time I was in a dangerous situation. 

First, I was “too young for an ICD” , never a good sign. “Why haven’t you been seen by our cardiologists in town?”  Another bad sign, I attempt to explain that they are not specialized enough, he tries to tell me their doctors are highly trained. I give up, he is committed to not hearing my words. Then after my x-ray came back he “didn’t understand why they had my leads placed epicardially” when I tried to explain he shrugged me off, and did not care to hear. He tells me everything has come back good, but with my symptoms, they need to schedule a heart cath for me in town the next day. He knows I have one scheduled in Nebraska in a few weeks but I need one now with my symptoms. I attempt again to explain that the reason I am here is because I wanted to make sure I wasn’t ignoring something I shouldn’t be. I walked in knowing my vitals were normal, and that none of these symptoms are out of the ordinary and that if my labs and x-ray are okay, then I am okay. He tells me he wants to make sure that I don’t have a blockage in a coronary artery, I tell him I don’t have acquired heart disease, and my heart failure is due to my great vessels being backwards and having a systemic right ventricle. I also let him know that you can’t just give me a heart catheterization, even my five time board certified cardiologist isn’t giving me my heart cath, he has a pediatric cardiologist coming in to do that because they are more familiar with my anatomy. This barely gave this doctor pause, he told me to get ahold of my clinic and have them call him. He left the room. Leaving the door open…again. This may have been my biggest beef with him. Every time he left he left the door wide open, curtain pulled yes, but the door wide open. Did he forget we are still in a pandemic? Did he miss the part where I am immunocompromised? I was so annoyed. 

To make this very long story shorter, I will get to the punchline. I called my nurse at the heart clinic. She was confused as to how I found myself in the ER in the first place. I explained my PCPs new found gun shyness and her recommendation. She understood that, what she did not understand was how this ER doctor got to the belief that they should be giving me a heart cath. Almost at the same time we said “They are treating you (me) like you have acquired heart disease.” YUP! Within the half hour, not my nurse, not the on call doctor, but MY DOCTOR, was on the phone with the ER doc and told him that he would not be giving me a heart cath, that he had personally looked at all my test results and that he should release me. THANK YOU Dr. Tsai. I was released within the half hour, begrudgingly.