Monday, February 23, 2015

Consultations and Realistic Expectations

It's been a month since my last post, and honestly, I've been battling myself for weeks debating whether or not I should actually publish this post. I've had a majority of it typed out for a few weeks now. Any way, New years day I posted a picture of all of my race bibs and bling from 2014 with the caption: "Another year measured in race bibs and bling. 2014 was a year I won't soon forget, but 2015 has big things on the horizon for this girl."


(Last year I ran 19 races, this year I'll be lucky if I run 5)

Big things indeed. This spring I'll be having open heart surgery. So how exactly did it get to this point? Let's rewind.

If you've been following along on my running adventures and race-cations, then you may recall back in May when I posted about my appointment with my Cardiologist regarding my hands. If you remember, my hands were swelling when I ran. My cardiologist didn't think the swelling was due to my heart, but rather a histamine response while running. He asked me to take Benadryl before my runs just to see if it would help. He also had me return a few weeks later for a Metabolic stress test, and that's really the last thing I posted from a cardiac stand point.

My Cardiologist reviewed the results of my echocardiogram and Metabolic Stress test at the pediatric cardiothoracic surgical conference, and as I mentioned in a blog post, that was another story for another day. I guess that day is today.

July 8th, 2014, 10:33 am: I missed a call from my Cardiologist regarding the recent pediatric cardiothoracic surgical conference where he presented my testing. He asked me to please call his office back at my earliest convenience.

July 8th, 2014, 11:30 am: I returned the called to the Children's Heart Center and spoke to my Cardiologist. He told me that after presenting my testing, the team agreed it would be best to go ahead with a cardiac catheterization with the idea that I would have a valve placed within a year. He said the cath could be done anywhere up to a year in advance of the procedure, but that it probably could not be done before the end of summer. I told him it wouldn't be done until nearly the end of the year as I had already planned for 3 more half marathons before the end of 2014. All was fine with that. He said he would have his office call me to schedule.

November 24th, 2014: I had my cardiac catheterization. I've had a handful of these in my lifetime, however, none that I actually remember, until this one. The last cath I had was when I was 16, and it was under general anesthesia because they were closing the hole in my heart with an Amplatzer device. Honestly, it's one of the strangest feelings. When they inject the contrast dye, you truly get an idea of how fast the blood is pumped through your body. I mean, being a cardiac sonographer, I know our bodies pump roughly between 5-7 L/min, but dang, you definitely feel the contrast rush through your body! It was pretty cool to lay there and look at my heart on the screens, though I was slightly out of it from the conscious sedation. I remember my cardiologist asking me if I was bored yet, and I just responded "Meh."

November 25, 2014-January 22, 2015: Honestly one big blur. I had exchanged a few emails with my Cardiologist regarding my cath results, and plans to go ahead with valve surgery as discussed. Mid January I still had not heard from pediatric cardiothoracic surgery, so I took it upon myself to call and get the ball rolling. The woman I spoke to said she'd pull my chart and give it to the Nurse Practitioner, and then get back to me. No call back, so I called again the next day. She told me that they couldn't schedule my surgery until I had my cardiac MRI. That was news to me, so I emailed my cardiologist again and asked about that. After a few days, I received word that the Cardiac MRI was not necessary, and that the surgical team should be calling me within a few days to schedule my surgery.

January 22, 2015, 11:07 am: Finally, after jumping through more hoops than I can count, they called. I was able to schedule my consult and surgery. Let's just say surgery is scheduled and leave it at that.

February 3, 2015, 11:00 am: I met with the surgeon who is going to be doing my procedure to discuss details and go over the list of questions I had. Honestly, I didn't have any idea what I was really in for. Things were a little more complicated than I had originally anticipated, and more needs to be done than just the valve. When he showed me my cath I felt all the color and expression leave my face. I won't go into detail, but I will say this, I'm honestly surprised I'm not having more symptoms than what I've been experiencing.

My surgeon said they're going to be very strict about my breathing exercises. He said the first day after surgery when I get off the vent, they're going to make me cough. Sounds horrible, thankfully they give you these special pillows to hold against your chest while you cough. He expects me to be in the hospital for about 5 days. My surgery will be on a Monday, and discharge on Saturday, but could be Friday for good behavior (and by that I mean if I'm diligent with my breathing exercises), and of course if there are no complications.

All that aside, I continued with my questions although most of it is a big blur because I couldn't even think straight. Thankfully, I had all my questions written down on paper. I asked basic questions like if I needed cardiac rehab, how long until I could drive again, start doing physical activity, etc. He didn't come right out and say it, but it didn't sound as though I had to stop running between now and my surgery. I finally asked him my most important question... if it would be unrealistic that I'm recovered in time to run a half marathon by mid November. He made it sound like it wasn't an unrealistic expectation - so for now, I'm planning on being recovered in time for the Wine and Dine half at Disney World mid November. If worse comes to worse, I can always walk it, or defer... again.

My surgeon seems great though, and I can tell he really loves what he does just by the way he talks and explains things in detail. He asked me if I had looked up what my condition was (Pulmonary Atresia with Intact Ventricular Septum), and I told him I am a cardiac sonographer, so I knew exactly what it was and what he was talking about. However, he took a lot of time to explain things to my parents and answer all of their questions as well, and I really appreciated that. After my appointment we went out to grab lunch, but I wasn't very talkative. I couldn't even enjoy lunch with my parents, let alone stomach anything, but I forced myself to eat a side salad.

By the time I got back to work that afternoon, I had tears streaming down my face. It was just a lot to take in, and I guess not exactly what I was expecting. My coworker followed me to one of our echo rooms and gave me a hug as I began to explain things to her. She looked at me and said, "Stace, honestly, you've done an amazing job at managing all of this in until now." She was right. Since finding out in July, I had run two half marathons, three 10K's, and a handful of 5K's. I had studied, sat and passed a board exam, and not once did all my stress break me like this did. It was finally sinking in.

It's been a few weeks since my consultation, and the dust has finally settled. In the meantime I've been spending a lot of time going through blogs and websites reading up on what I should do to prepare for surgery, what to expect after surgery and during recovery. Yes, I've had open heart surgery before, but considering I was only 1 day old and 3 days old at the time, I don't exactly remember any of it. There are even blog posts on what to pack for the hospital which I have found to be quite helpful. Some of these things I would not have thought of, but they make sense. Two of the Physician Assistants I work with have both told me to take items with me that will make my hospital room feel more like home (blanket, pillow, pictures, iPad, etc), that way I'll be more comfortable.

I went to my parents this past weekend, and that was the first time I had seen them since my appointment. We actually had time to talk about things since I basically went mute after my consultation. I'm also starting to realize how much paperwork I'm going to have to deal with - and I can already feel the headache coming on. All that aside, mom and dad gave me a few gifts this weekend. They bought me a new heated blanket for when I'm home recovering. Mom also handed me a little gift bag with tissue and said she thought my surgery was going to be sooner than we had it scheduled (we all did, but that was out of our control), but they wanted to give it to me now to let me know how much I mean to them. I removed the tissue and saw two Alex and Ani boxes.


(My new Alex and Ani bracelets from my parents)

One was the Little Brown Bear bangle, representing loving, happy, comfort. Mom said she thought the bear was fitting and knew I'd need the comfort during my recovery. The other was the bangle of the month, Key To My Heart, representing secret, love, soul. They wanted to give this one to me because of its heart shape. They have always given me heart shaped jewelry (necklaces, rings, bracelets, etc) because it's fitting for my condition. I'm sure I'll be happy to trade in my hospital ID bracelet for my new bangles, and honestly, I'll probably wear them while I'm in the hospital.

All this aside, since I was not told I had to stop, I will continue to run up until the day before my surgery. I'll enjoy being with my friends and my weekly running group. I will also still plan on running with Linda after work when we can (and when there's not a below zero windchill). I figure the healthier I go into this, the faster I'll come out of it.

QOTD: Can you think of anything exciting I should do before I have surgery? I need an adventure!