The full story of my heart procedure

First off, I should tell you that I am home in high spirits, recovering quickly. I’m finding myself more mobile and feeling stronger much faster than I anticipated (but I’m still resting, as ordered). So, as you read on, remember that all the unpleasantness that I’m describing is over, and not lingering too much.

The big disappointment is that the procedure was not able to correct the problem in my heart. The fiber in my heart that needs to be eliminated was too close to the normal one – so if we had burned away the extra one on Wednesday, I would have been at risk of needing a pacemaker (not a great prospect at age 25, if it can be avoided).

This means that I have to go in again, to a different facility that has the necessary equipment to perform a cryo-ablation – which is basically the same procedure, except that the extra pathway will be frozen, rather than burned away. This method is much better for my particular situation because it goes in two phases: first the extra fiber will be frozen to the point where it doesn’t function anymore, but is not destroyed. At that time they will make sure that they have found exactly the right spot, and that the normal pathway has not been damaged. After that is established, then they freeze the extra pathway to a much colder degree, completely destroying it. With the burning method that I was supposed to have yesterday, there is no middle stage – and so it is much easier to damage the heart, making a pacemaker necessary.

Now I’ll launch into a full description of my procedure Wednesday (parts of this may not be suitable for any squeamish readers in our midst): All of the staff at the hospital were wonderful. They had me change into a gown right away and put me on a rolling bed. Mom got to come in at this point and wait with me until the operating room was ready for me. The procedure started right on time, between 8 and 8:30. They rolled me into the operating room and had me scoot over to the operating table. They covered my chest and back with sticky (COLD!) pads, that were hooked up to wires (like when you get an EKG, only more, and some larger). They tied down my arms, explaining that patients often have a dangerous natural reflex to try brushing things off their legs, accidentally tearing at the catheters. Then they shaved and disinfected the spots where the catheters were going to be inserted.

At this point my doctor took over and started giving me numbing shots. These were fairly painful, especially as he had to stick the needles deep inside me. Then he began to insert the catheters. There were four total, going up through veins on both sides of my groin. I could feel the tubes deep inside me, snaking up to my heart, getting positioned and repositioned. It was a horrible, sick feeling. Not painful, in the sense that I’ve ever experienced pain – but almost worse... I can’t even describe the feeling, as it was a sensation I’d never felt before. It just felt foreign and wrong. I hated every time they came back over to move the catheters to a different spot.

Once the catheters were inside me, another doctor, also specializing in electrical dysfunctions of the heart, came in to observe. They began messing with my heart rhythm, starting fits of tachycardia, stopping it again, letting it race for ages... Eventually they located the extra fiber. They studied screens with the lines of my heart beat, and what looked roughly like an EKG – I suppose, trying to figure out if the fiber was close enough to the normal one to cause a risk. Periodically they would come over and look at the screens over my feet that showed what looked like an x-ray of my chest (you could see the spine and my heart and the four tubes gently waving with my heartbeats). Sometimes they would start up the tachycardia again. When this was happening sometimes I must have looked rather grim, because the darling nurse that was sitting near my head would ask me if I was doing OK.

The whole ordeal felt rather surreal. I was wide awake for the whole thing – they didn’t give me any sort of laughing gas or sedatives... But it was hard to tell how much time had passed (I believe the whole thing lasted about 2 hours). It was a strange sort of mental test, allowing my body to be manipulated in this manner. I found that I couldn’t really focus on my breath, since the manipulations on my heart made it impossible to take normal deep breaths. I mainly just stared at the ceiling and focused on snatches of prayers – or even just individual words – when things got rough (there was this big sign on the ceiling that said “do not remove,” referring to some of the equipment attached up there, and it bugged me so much to be staring at those words – I kept thinking of Yoko Ono, wishing that there was just a sign up there that I could focus on that said “yes.”)

Eventually my doctor came over and explained to me that they were not going to take the risk of going forward with the procedure. I couldn’t help letting a few big tears roll down into my ears at that point (I couldn’t wipe them away, as my hands were restrained). He kept saying in his kind, sweet way, “don’t be disappointed, this is the best thing for you. You are too young to have a pacemaker.” And he explained that they were going to take out the catheters, but that there was a different procedure that could be done elsewhere.

As I felt the horrible sensation of him pulling the tubes out of my body I was screaming in my head ‘Why couldn’t they have the right equipment here? Why would they invade my body like this, only to tell me that the thing I needed was in a different hospital? I DON’T WANT TO DO THIS ALL OVER AGAIN.’ But all I could do was lie there, restrained, and shed a few more tears into my ears. They started cleaning up the room and I felt awful and abandoned. I was freezing cold and asked for a blanket – a request that seemed somehow impossible in the operating room – they just kept saying, “there are wonderful heated blankets in the recovery room.”

They covered my wounds with gauze and put lots of pressure on them. Then they used a huge piece of tape on either side to keep the pressure of the gauze on the wounds when my legs laid flat. I had to scoot over onto my original bed without bending my legs at all. Then they wheeled me back into the recovery room. I had to lie still and flat there for the next four hours.

Once they let my mom come in to see me I started sobbing and couldn’t stop for some time. The tears came in waves. I was so frustrated and sad that they weren’t able to fix my heart. I just wanted to be done with it all. With the memory of the procedure so fresh in my mind I couldn’t bear the thought of doing it all over again. I would remember little details of it all, and the tears would well up again. I thought of having to explain to everyone that this was just the beginning, and a new wave of tears came.

After the first hour I was feeling somewhat better though. Crying less. And then they brought lunch (Meatloaf Wednesdays!), and that distracted me. Finally Jacob was able to come over, before teaching his class, and that made me feel much better. Just having him and my mom with me helped me get centered and come to terms with the new reality of things.

They didn’t need to keep me overnight, since there was no need to monitor my heart – as they said, “well, we didn’t really do anything to you” (that didn’t feel like nothing). So Alesha came to pick us all up and take us home. I couldn’t move very well, especially with the bandages on my legs – I don’t think I’ve ever taken such tiny, slow steps in my life. But it was great to get home and lie down in my own bed (on my side! I had such a hard time staying still on my back for four hours).

So I’ve just been resting and taking it easy ever since. Jacob and Mom are wonderful – giving me hugs and kisses, getting me glasses of water, cooking, etc. And it’s been great fun to finally be able to talk to some friends and family on the phone. Normally with school being so busy I don’t get to hear my dear one’s voices for months on end.

And that’s the big story. Thank you again for all the encouragement. I love you all.
xoxox