Sunday, March 17, 2013

Surgery Number 11, worst day ever.

I have finally gotten up the courage to write some of the details of what happened in surgery. It has taken me a while before I have been willing to write about it because it really was so traumatic for me. However, I think it is easiest written here so then I don't have to keep talking about it over and over again. It is also therapeutic to write it out, so here goes nothing.

I wasn't so nervous for this one. I had good feelings about it and felt peaceful that everything was going to go OK. Last time (my surgery in December) I was so revved up of all the possible complications, but most of all I was very nervous that I was not going to be sedated enough and have the same scenario of being awake like during my first heart surgery. Gratefully on this past surgery in December they used general anesthesia and so I was totally and completely out. They had told me that they would schedule an anesthesiologist again and so my worries of being awake for this upcoming surgery were totally gone.

I went through my normal ritual the night before, and unlike last time, I slept really well. I was excited to finally have this over with. I had the assurance that I would be fixed up and ready to move on with life, a prospect I had been hoping for for a long time. The next morning we checked in, no problem, and after they called my name we ran into the doctor. He explained to me that they would not be able to use general anesthesia like they did last time because they thought that by putting me to sleep, they were also slowing my heart down too much. This would prevent my heart from going into tachycardia and unable to see where the problem lie and how to fix it. He explained that really, there would be no point to doing the surgery if my heart didn't perform, but assured me that they would keep me out of it enough that I would be comfortable. My heart sank...I was nervous now, but tried to reassure myself that they did have an anesthesiologist there to keep me comfortable so I would probably be fine.

I got dressed and the nicest lady ever, my anesthesiologist, came in. She was so kind and understanding and said she would do all she could to keep me comfortable and ensured me that she would put me all the way out while they put in and took out the lines. Then, in between, she would bring me up while they were working on me but keep me out of it enough that I wouldn't really be aware of what was going on.

After I got into the operating room and they had all the stickers all over me, I laid down and I was out like a light. Next thing I know, I am waking up strapped completely down with an oxygen mask on my face, the doctor standing over me with the catheter in my groin, explaining to me that they are going to have to keep me all the way awake, no sedation. He continued to explain that they could not get my heart to recreate the problems I had been having. Jenn (the anesthesiologist) apologized profusely that there was nothing she could do, but that I could call out to her at any time and she would be right there to help me. Stabbing pain started to radiate from my leg when I realized I was not completely numb where he had put the the lines in. This meant many more shots in my leg and in groin region...ouch. He apologized, but I assured them I was tough though, and I could get through this. Little did I know how horrific the next 3 and a half hours of my life would be.

With Jenn about 15 feet away and behind me, and the doctor and nurses in a room behind the glass, I laid there...totally alone. The most alone I had ever felt... freezing, scared, and tied down. Then, with no warning, all of the sudden I feel medicine shooting through my IV that sends my heart rate over 200 instantly. My body felt like I was completely on fire, I was shaking uncontrollably, my heart pounding as hard as I have ever felt it, chest pains, feelings of intense anger and I start crying like a baby. No one explained what they were doing to me, but I was being pumped with Isuprel (a drug that mimics adrenaline) at a very high dose. I was scared out of my mind and completely coherent...not even a little hazy or sedated in any way. That lasted about 5 minutes when the doctor sent the nurse out to "give me a break". She turned off the medication and I felt my heart rate come down. The doctor came out to fish around with the catheter in my heart while he mapped out everything. He could see the tears running down my cheeks and apologized again that they could not sedate me at all. It would be all for nothing if they couldn't get my heart to do "its thing".

He went back into the room, and again, medication came flushing through the IV, but this time with even more force...I was shaking all over and so scared. I yelled out for Jenn, over and over and over again but she could not hear me with my oxygen mask on my face while she was conversing with another nurse. That was it, I was totally alone now. No one could hear me. All I could think of was the Savior and that in some small way, this is how he must have felt when he was all alone and in agony. I prayed, and prayed, and prayed, and prayed some more that I could feel just some bit of comfort. Was my Grandpa somewhere up there? Could he help me now? What about all my little lovely old folks in the spirit world? Could they be with me? Somebody....anybody? I felt nothing. Nothing but this crappy medicine that was making me more angry. Then when I felt like no one was listening to my prayers for the first time in my life, that made me even more angry and scared. And then, they gave me another break.

Thank goodness.

My body hurt so bad from having to lay so still on a flat metal slab...especially my lower back. I finally got Jenn's attention and she wiped the tears from my eyes. I was so grateful for her at that moment. She ran in to ask if she could give me a tiny bit of pain medication because of how uncomfortable I was. At first he said no because it could possibly sedate me, but she begged for it. I was so grateful she was my advocate. Eventually he agreed and she ran to give me as much as she possibly could. It was seriously heavenly. My body relaxed a little and my pain subsided. When the doctor noticed the pain meds weren't messing with my heart, he told her she could give it to me as needed. I was so grateful. He came back in and fished around in my heart again, which felt really strange, and promised me he was going to do all he could to find this problem and that this torture would not be in vain.

Well, on and on and on and on this process went. Each time turning the medication higher and higher til they eventually pumped me to an 8. The most they generally pump a person with is a 4.5 or 5....and I was at an 8. True torture, which had even Jenn in tears to watch this process happen over and over and over again. I was so angry that they could not get my heart to do what it does to me all day every day, which is go into atrial aggravating. Why wasn't this working??

I felt like a prisoner on death row being executed. I have watched those TV shows of the lethal injections they give to those men and what it does to their bodies....feeling like they are on fire, and shaking profusely. All while being tied down.....that is exactly what was happening to me, only over and over and over again.

I tried to talk to Jenn (when I could actually speak when I wasn't so out of breath from my heart beating so hard) about her life, my life, anything to keep my mind on other things. But oh how angry I was. Eventually swearwords were falling out of my mouth. Jenn told me to say them as loud as I wanted because it was just me and her. I am not at all an angry person, so this new, very intense emotion that came at me like a tidal wave was surprising. I kind of laughed through my swearwords and I gave myself a pass. I decided I didn't have to feel one bit bad about those words this time, since really, I think the medicine made me do it.

By the end of those 3 and half agonizing hours, Jenn was rubbing my poor feet and had tears as she apologized because all of her pharmaceutical abilities had been stripped from her. She assured me once again that she would do anything she could to make me feel comfortable. The doctor eventually came in and said that he had good news and bad news. The good news was, they were finally able to figure out what was going on. The bad news is that it is not fixable.

Are. You. Kidding. Me?? Not fixable??

Then the tears really started to come....what had I gone through this for? The blog post I had written the day before about Zion's Camp and having to go 800 miles for nothing was now slapping me in the face because I was REALLY mad. And sad. And disappointed. I was really grateful for a doctor who could stay focused enough to not give up on trying to find an answer all while knowing he was torturing me - and he admitted, he really, really tortured me - but I still hated him at that moment. As soon as Jenn got the word she ran in and knocked me out cold so they could take all the lines out. Welcomed relief.

I woke up very angry and very distraught. Once again I was alone in my room, with one very full bladder, and was told I had to lay flat for another 4 and a half hours. Oh! The anger. The anger was too much. Finally my parents came in with great attitudes trying to cheer me up which only made me more mad. I did not want to be cheered up. There was no good in the world, and I officially hated my life (once again, medication side effects here). And, on top of that, no one understood what I had just gone through! A tech came in to do an echo complaining about her "bad day" because she was running late. I wanted to say, "really lady?? You want to talk about bad days huh?". Ohhhh what a brat I was. I never acted like this.

The doctor came in and explained that I had a completely different issue than they had expected called "inappropriate sinus tachycardia". This meant that the node that controls the pace/rhythm of my heart was overreacting at the wrong times...such as during rest, or when I am asleep, or over compensating in times of exertion (like going up there stairs). When exercising it makes me feel extremely winded, my heart rate way too high and then takes way too long to settle down after. He explained that there really is no treatment because to ablate that area around the SV node is too dangerous. This means I will be on beta-blockers (that I hate with everything in me) for possibly the rest of my life. We also planned on getting back in to cardiac rehab and going off some medications that could be exacerbating the problem. He also said there was a chance of it going away over a long period of time which was good news. But whatever, I was still mad. I didn't want hear good news, I just had wanted to be fixed so bad...and that wasn't going to happen.

I stayed angry for a lot of days. That medication is horrible that they pumped me with and can take about a week before it completely leaves your system. Not to mention on top of  all that crap in my system, starting me on this new beta-blocker that has made me crazy depressed and extremely tired. I will say, my heart rate is down in the 60's which it hasn't been since open that is great news.

Anyway, this depression and anger is why I haven't wanted to see the people I love, talk about my experience, or do anything at all while I worked through this trauma. I have had awful nightmares of being strapped down in an operating room and I can tell you I would not wish this experience upon anyone. It was literally the most difficult thing I have ever had to do, and I feel like I can never fully explain what it felt like to go through all of it.

I know it will get better, and it is getting better, but it will have to be at my own pace.

I can't wait to get back to the old me.  And it is coming, one day at a time.

So there you have it, the longest blog on earth. If you made it to here...well, you're a trooper to listen to my complaining.

I must admit, it felt good to bawl my head off while I re-lived the experience so that now I can put it away and out of my mind.

Thank you so, so, so, so very much for all the prayers in my behalf. They were not in vain, and even if I felt alone...I know I wasn't.

More later.


Hailey said...

Celsea, you're the strongest person in the world. Hang in there.

Caro Wuergler said...

Wow, Chelsea! I can't even begin to tell you the feelings I've felt reading your blog. You are an inspiration, a real trooper to endure the pain, trauma and sorrow. Heavenly Father has a plan for all. Stay strong and nothing will seem difficult from your surgery day forward. Your family love you so much. I cant imagine the helplessness your parents must feel. Hang in there! Lots of love. Carolina.

Jasmine said...

I cried while I read the whole thing. I really don't know what to say other than don't you dare apologize for being mad or depressed! Those are such NORMAL reactions and you have every single reason to feel them. They are part of the grieving process and its healthy to pass through and experience them. Love you! You're amazing.

Penny Dunaway said...

Chelsea, I am so sad for all you have had to go through. I am crying for how horrible this experience was. I will continue to pray for you. I know miracles do happen and hopefully one is on the way for you. You are handling things well under the circumstances. Heavenly Father does have a plan for you. I know you will trust in him until this thing is better. Love you, Penny

Gemie said...

Dear Chelsea, Even after reading your post, I have a hard time fathoming how awful it must have been for you. I am sure you are forgiven for any swear words you uttered. I am sure the medicine was responsible for those and the feelings of anger. You are such a sweetheart. I am so sorry you did not get the fix you were hoping for. Hopefully, your heart will correct itself over time. I know Heavenly Father loves you. This will all be made up to you at some point. The Savior's Atonement is supposed to heal us from our hurts and sorrows. You have certainly had more than your fair share of both. Please know that we love you and continue to keep you in our prayers.

Ryan+Michelle+Ellie said...

Chelsea... I'm in tears! You are such a strong person, and I don't know anyone else who could get through something like this. My thoughts and prayers are with you and I hope that you won't have to go through that again ! I love you and thank you for your strong example!

isaac said...

Chelsea, you are so strong, stronger than you look, continue to hang on there. greetings from your friends in Kenya, we love you very much.

Sherrybear said...

Im speechless...I will never complain again I swear. But I must admit, I sure wish I could have been there to hear you swear!!! Hahahahahahahaha
Love you Chelsers

Scott said...

My Chelse. I am so so sorry! I know it was really rough, but I didn't think it was this bad. You poor thing! I know all of this is not in vain, like Zions Camp, it will refine you and create an even more incredible person that you or I know. My sister has a plaque (I know, shocking, someone in my family has a saying on a plaque?) that says, "It was magic when she realized who she had become."
I have been praying for you and hoping that you improve quickly and we get get our dirty rat Chelse back! Love you.

Benlovesting said...

So sorry about this, you are awesome!

V Foley said...

Deuteronomy 31:6.

I admire your strength and am praying for you. Hang in there, my friend.

Krista Willis said...

I have a CHD and had a very similar experience earlier this year as well! Being wide awake and being pumped with a medicine that makes you feel like you are bouncing off the table is never comfortable. I wish they had put me out to put my ports in and take them out. I was wide awake while they did this. The port in my neck was impossible and I ended up with nerve damage in my neck because they poked around for so long.
I just want to let you know that you are not alone and there are people out their with similar experiences! Just keep your head up and know it will get better! Sometimes we have to have things like this happen to remind us of just how strong we are!