Perhaps a third time?
/The decision to proceed with another EP study and ablation started about a year ago, when, after several weeks of normal rythm my heart once again made arythmia the norm. It came back worse than it had been before that ablation that I had done at Walter Reed medical center in the D.C. area. I have rose colored glasses of that experience because Josh took leave and we as a family took the rotator from our little island of Terciera to D.C. and made a vacation out of it. My dad flew in from Wyoming to see us and help with the boys so Josh could be at the hospital with me. It had been a LONG several years since I'd been able to just sit and talk with him, face to face. It was a beautiful thing. My sister came in that weekend so stay with me for the few days I had to stay in the area until my follow-up appointment the next week. Josh and the boys took the rotator back to the island on Saturday and I spend the next three days with my sister, Sarah, and dear friend Vicki Smith. We stayed at Vicki's house that weekend, and what a grand time we had! I felt the PVCs trying to fire back up that weekend, but once I got home to the island they all but disappeared for weeks. It's been since they returned that we've been trying to figure out when and where to do another ablative proceedure. They effect my sleep, breathing and we often wonder if they have something to do with the migraines and vertigo that I get. They come and go, but are never completely gone. At their worst the off beat will happen two or three or sometimes even four times in a row and I'll only have one or two normal heartbeats before the next string of them fires. They aren't worrysome, just very inconvenient. We tried to get them recorded on EKGs and a Holter monitor during our last few months on the island, knowing that it would be MUCH easier to get to Walter Reed from there than it would from Turkey. But they would literally disappear every time we tried to catch record of them. Going back to Walter Reed wasn't supposed to happen. We arrived in Turkey and waited a month or so before talking to a cardiologist here and found out that they do ablations right at the local hospitals and it's considered a very routine proceedure here. Perfect!
We hem hawed around it for a while and then called the cardiologist to ask for a date - he called back and said Thursday, the 18th. So in we went. Our sweet Turkish helper, Hatice, was able to come be the boys as the folks she typically works for on Thursdays are gone on vacation. She arrived at 8:00, and after much ado getting out of the gate, we arrived at the hospital around 9:30. The proceedure didn't start as soon or go nearly as quickly as they had anticipated. And I was awake for.the.whole.thing! They came to the room and wheeled me out on my bed. In a culture that is predominately Muslim, covering the body and maintaining modesty is very high priority and that was very apparent during this whole process. A couple men walked in the room and immediately darted their eyes away after seeing me standing in my hosptial gown. They asked me to lay on my bed and hastily covered me with a sheet. I was kept very covered during the entire proceedure. Even after the proceedure the ones that were helping pull off the EKG leads didnt uncover me but only enough to see where the leads were. They held the sheet up so no others in the room could see anything. I was fascinated by it all, after having the proceedure done in the states where everything is done, seemingly, without much regard to nekedness or modesty. I appreciated their efforts here to keep me covered. They wheeled me into the room just outside the proceedure room and my Cardiologists wife, the anesthesiologist gave me a couple syringes full of something that gave me a wonderfully carefree attitude about it all. She smiled at me heartily as she injected them into my IV. They moved me over to the teeny skinny proceedure table and we went through the all too familiar steps of getting my body adjusted ever so perfectly over the imaging device under the table and moving the imaging device over me to the perfect spot, until an ultrasound image of my heart could be seen on one screen and a vibrantly colored electrical map of it could be seen on another screen. They layed the blue sheet over me that had the two cutouts for the femoral artery insertion areas and my cardiologist started opening the package to do the insertion. I felt a bit confused, as I had been completely sedated for this part of the process last year. I asked if they were going to knock me out and he said, "We will see." HAHA! Want to make a patient uncomfortable?! That's how! He used local, which of course stung like the dickins and then made a small incision and inserted the catheder that would house the burning hose. I'm sure it's got a technical name, but that's essentially what it is. A looooong blue hose that burns things. I felt tugging and a very odd sensation of something poking along inside my rib cage and then in my heart, all the while I watched in awe at the ultrasound screen where I could see the probe being pushed up through my rib cage and into my heart. I could see the duhdum, duhdum, duhdum, duhdumpum......pause, duhdumpum, pause......duhdumpum, pause duhdum.... Crazy! Wacko heart. I asked again if they were going to knock me out and he asked if what they were doing hurt and I said it didn't. He said, "probably not then." Wait....What?! They mapped out my heart for a bit and then I heard a quiet long beep - the burning had started - the pain was very minimal. It felt a bit like a gentle muscle cramp that wouldn't resolve. I was bummed, however, to find that the deeper they burnt, the more intense the pain got. He asked me repeatedly how I was feeling, when he'd hear me groan quietly and squeeze my eyes shut - I had to keep very still, for obvious reasons, and my arms had to be up over my head so they wouldn't interfere with the image. At one point he told me they'd completed and were just waiting to see if anything fired back up - it did and he reassured me that it would only be another 5 or 10 minutes of burning. They were going to burn a perimeter around the area to be sure they'd ablated all problematic cells. He asked if I could handle another few minutes and I nodded yes. The pain grew more and more intense as the minutes passed and he apologized to me that every time they thought they'd completed, it seemed another area would fire up. At one point I was certain the tears would start forcing themselves out. I had toughed through more than an hour of the pain and was tightly clenching my hands behind my head, trying to keep my groans from being heard. I could see the vibrant colored electrical map of my heart being rotated this way and that in order to help locate the cells that just wouldn't relent. The probe was in the picture and there were little dots that represented where scar tissue was from my last ablation and burned areas from this procedure (I assume, anyway, as more appeared as they continued to burn). At the top of the screen was a hilarious depiction of a face - where my head was in relation to the probe. At one point, though I'm not positive because they were speaking in Turkish, I think they were all laughing hysterically about the cartoon head. It turned awkwardly when they rotated the image of my heart, and completely detached from the rest of the "body" picture. There were also two lumps to represent where my breasts were in relation to my head and heart. They were awful, lumpy and one sagged much lower on my "body" than the other, especially when the image was rotated. Even with the intense pain I wanted to laugh, but couldn't afford moving around that much. I had to settle for a pained smile while I squeezed my eyes shut and clenched my hands tightly together to tough out the current burn they were performing. The only thing I can relate the pain to is a labor contraction that just won't.let.up. At first with the initial few burns the pain would stop as soon as the burning stopped, but after a while it just hurt all the time. My anesthesiologist rushed over after being given a nod from her husband, the cardiologist and injected two beautiful syringes of clear liquid into my IV. She moved the heart rate monitor from my pointer finger to my thumb, as I was distrupting it while clenching my hands together. A sweet wave or relief followed several seconds after the to syringes were emptied and the pain disappated, but I was still able to keep my eyes open. My blinking slowed and things grew foggier in my vision, but I was still awake. I'm not sure how long that lasted - it felt like only a moment or two before they were helping me back onto my bed from the room and peeling the leads off my back.
They wheeled me back to my room and I saw as we left the proceedure room another patient being wheeled in - we were about an hour and a half past schedule at that point. We got back to the room and Josh walked over to the bed and said, "You look very awake". I smiled and proclaimed proudly, "I stayed awake the whole time!" He looked surprised and chuckled - I was still in a bit of a stupor from the pain killer I'd been given, but it soon wore off and I noticed just a tinge of aching pain in the center of my chest.
At first the pain wasn't bad, and I wasn't surprised, but it rapidly spread to the left side of my jaw and left ear, over to my shoulder and down my left arm and in my back, just behind my heart. There was not position that would help and I clamped down on my left shoulder with both hands while rotating it around and around, as if that would help. The pain grew more and more intense with the passing minutes. I'd held tears back long enough and finally allowed myself to cry about the pain. Josh checked my pulse, while resting his forehead on the arm of my bed - I'm assuming he was praying - that's what he does first. I love that about him. He paged the nurse and the cardiologist and they both came to check vitals and do an echo on my heart to be sure I didn't have a clot. Everything looked normal, but there was that ridiculous pain that just wouldn't subside. I told Josh I felt like I was having a heart attack. My cardiologist told me that I was essentially having a heart attack, just on the other side of the heart as usual. A "non-dangerous heart attack". I didn't know there was such a thing, but I had one and my cardiologist was not a bit surprised. That helped ease my mind about it. I remember laying there through it, trying desperately to find a position that would make my left side hurt less, not fearing. I'm so prone to fear, but I wasn't afraid. I'm so thankful and humbled to have finally reached a place in my life where I have come to terms with the soveriegnity of our God - that my days are numbered and there are simply no surprises for him. I didn't figure I was going to die, even if it was the serious kind, since I was laying right there where they could do something about it, but I was at peace if that weren't the case.
Now I know what to look for in the future, should I need it - I will never forget that pain. It was scary, and intense and unsettling - intense throbbing and aching.
The tech came in and gave me, "pain killer" - the only thing she could translate - "what medication?" my husband asked. "Pain killer" she said over and over again. It was slow acting, but eventually took away most of the pain, and made me very sleepy. Josh had to return home to get the boys into bed and relieve our beautiful friends who rallied together to take care of the boys. He said he was trying to figure out the logistics of staying and having someone stay with the boys, but it was just too much to figure out that late at night. He told me later on facetime that he felt awful about leaving me while I was weeping in pain on the bed.
He called on facetime when he got home and I was able to talk with the boys - mostly coherent, I think. Luke was distraught that he couldn't actually touch me and kept pulling the iPad into his chest saying, "hug". He was inconsolable so Josh took him up to bed so I could talk to the older three. They told me about their day and their time with Hatice. Hatice called shortly after I hung up with them and told me she loved me and that she missed me and was worried. It was good to talk to her - she assured me that they boys behaved wonderfully and not to worry. "No sitrus" she kept saying. ("no worries/problems". I layed in bed for a bit while the narcotic slowly wore off and then got up to use the bathroom. I felt ravenously hungry and parched. I called the "liason on call" who was actually on base - I thought I was calling the translator at the hospital. ha! She called the translator and said I was asking for water. They brought water and food. I was only able to stomach a small amount before feeling queezy. I'd snuck in some zofran, knowing that trying to translate that I needed an anti nausea medication might not go my way. Narcotics make me wildly queezy. After eating a bit I layed back down and called Josh on facetime again and we talked for a bit before I was ready to sleep.
As is typical in hospitals, the night staff was relentless in their sleep interruptions. I was simply exhausted and just wanted to be left alone, but they came in every couple of hours to poke and prod. They were simply doing their job, but certainly there's a gentler way to do it than bursting in and flipping on all the crazy bright lights overhead just to take a blood pressure and heart rate reading. I was awake every hour or so for a few minutes and then would doze off again, all night. They came in at 5:45 this morning and told me to get up and use the bathroom, walk and then get dressed to walk in the hallway. I suppose to show them I was recovering properly? After walking the hall a few times I asked if I could go back to bed. The translator looked at me and said, "do you want to go back to sleep?!" I held back an indignant laugh and said, "Yes. Please." They let me lay back down and I was out in a flash. Josh called at 7:15 and I only lasted a few minutes in that conversation. He said he would talk to Hatice and get to the hospital as soon as he could arrange a ride. I passed out again and woke up at 8:30, remembering that I should have seen the cardiologist by then to go over my morning EKG. He came in at 9:30 and shot my straight. He explained to me that they'd burned as far in as they could without burning through the wall to the right chamber of my heart. After studying the procedure and talking with the EP doc, they strongly recommended that we do another procedure, this time going through both femoral arteries into both sides of the heart, to locate the center of the electric pulse that they are fairly certain is directly on the other side of the wall from where they were burning. He said they could finish and tell me either that they'd found and burned the cells, or that they found the cells but that they are outside the heart, in which case an ablation will never fix the issue without open heart surgery.
I sat there, all dressed and anxious to get home, with my bag packed and my phone in hand, and I felt a bit discouraged with the idea of staying and going through the whole process again. After all that, it seemed like there really wasn't anything to show for it. I called Josh and talked it through with him, hoping that he'd just tell me what to do. He didn't, and I was left in the room alone, to decide.
I paced back and forth wondering what on earth was the right choice - if there was a right one. Stay and have the EP team enter both sides of my heart in search of an electrical signal they now believe is coming from the left side, not the right, or go home and continue to live alongside this persistent arrhythmia that effects my every day life in various negative ways (though, it's not painful itself, so that is a huge praise!) I had sat and talked it through with the Cardiologist in my room and laughed along with him as he tried to explain how complex an issue and procedure it really is, by holding my wadded up hospital blanket and burrowing his finger inside to demonstrate finding a tiny cutting of one single thread that was causing problems - but that that wasn't a good analogy, because the heart is way more complex than the wadded blank. (He is a tremendous physician and expert communicator) - He'd tried explaining it on my water bottle, saying they'd burned into the pinpoint area as far as the machine would allow them without burning through the wall to the other side of my heart, but the electrical signal never failed to fire back up after just a minute or so - so it must be directly in that spot on the other side. That's why they want to go back in, but it requires incisions and insertion into both femoral arteries instead of just my left. That will in turn require more time and more pain in recovery - not ideal as Josh is on TDY next week. He said they could start the procedure around noon and that I could return home tonight if we were able to get in to the clinic on base and get an EKG to send to him. We agreed and he left the room again. I felt like the decision hadn't been competely made. I stood in the doorway of my room there, just watching the empty hall, and asked the Lord very specifically to please just give me a clear answer. I felt uneasy about making either decision (because it really was only my decision to make) - so I asked him. If they could do it right at Noon like they said, we'd proceed, but if it would be several hours later, the answer for today was no. Josh got to my room just before my cardiologist arrived to tell us that the company that owns and sets of the device that allows them to do the ablations wouldn't be able to start in transit to the hospital until 4:00, so the procedure wouldn't start until at least 6:00. I turned to Josh and smiled and said, "Nope. We'll skip it!" It was that easy and for the first time all morning I felt complete peace about making a decision.
We'll reschedule for an early morning procedure once he gets back from his TDY.
I'm home and relieved to be.
That is the past 36 hours of my life - for those that made it through all that, I am grateful and a bit surprised. :) It's mostly for my own records because I look back on these types of things and wish I'd written about them.
