Thursday, July 26, 2012

And then there were two of us...

4 years
3 open heart surgeries
2 people
1 family

Does this seem ridiculous to anyone else?

It is currently 5:45 am and my pain medication has worn off. As I wait for it to kick in it occurred to me that I need to blog my last two weeks. I spent it in hospital - four days trying to figure out what was wrong, then 36 hours later being operated on with a 5 day recovery in hospital and now three months of rehabilitation at home.

It all started Sunday - my day to wake with the children. Noah wanted cookies for breakfast and me, being the shining example of a mother, was giving them to him. Suddenly, my right arm went totally weak and I felt lightheaded. I sat on the floor and felt the room spin. I lay down and my sweet Noah asked me if I was ok. I lay down and yell "KEITH! HELP!" until I heard him stir and come down to find me in the kitchen. I told him my arm wasn't moving and he proceeded to ask me a bunch of questions: "Do you know where you are? Whats your name? Where do we live? What are the kids names?" I got the answers wrong and kept bursting into tears because I was very aware that I was not answering correctly but couldn't find the right answer. After 20 min's Keith got an ambulance to come and they decided by blood sugar was low (this has always been an issue of mine) and proceeded to feed me disgusting sugar-in-a-tube. After I was able to sit, they had keith feed me toast and honey. I held the plate in my left hand and they all watched as three times in a row, my right hand fell into the toast without my noticing. Somehow they convinced me to go the emergency room just to have the hand checked out. Especially once I told them that about a month back the left arm went suddenly numb at work but after an hour the feeling came back. So I felt very sheepish and silly as I walked to the ambulance in my driveway, dressed in my PJ's.

Very quickly the emerg doc had decided I had just had a migraine and gave me some meds and oxygen to relieve the pain (didn't work and I still couldn't move my arm). I don't know if he believed me so I had him hand me a cup of water, which I ended up spilling all over myself as I tried to hold the cup. He said he could do a CT scan but didn't recommend it: I was young, may want more children, and he was sure my arm function would come back and a CT scan was like a years worth of x-rays. Feeling a bit silly, I agreed to go home.

That night I attempted to eat dinner with my right hand and couldn't even hold the cutlery. My left hand helped a bit but I have never realized how much we rely on both hands to function. I couldn't even wash my hair and forget putting on makeup!

In the morning, there was no improvement. If it was paralyzed from a migraine it should have been better by morning, surely? So Keith convinced me to take the kids to school and go to emerg again for the CT scan. To save writing about many boring hours logged in the ER here is the summary:

CT scan showed I had a stroke (Left side...that is why my right hand was useless). I wasn't allowed to go home until they found out why a 33 year old woman had a stroke out of the blue.

A doctor, who to this day I'm not sure of his specialty, followed my case right through to discharge. He was a bit awkward to talk to and was shy and a bit of an odd ball, but he checked on me daily pre- and post-op so I liked him. He ordered an MRI, echocardiogram and a transesophageal echo. I was told they were looking for reasons for the stroke such as autoimmune diseases, Musculosclerosis or heart issues. I was moved from the ER to the MACU, which is a holding unit at the hospital for those who need procedures/tests and who will be having a 3'ish day stay.

The following day no tests were done...which made me very bored. Mom and Keith came and kept me company and helped me exercise my right hand.

The next day they moved me out to the neuro floor and planned the MRI and echo. The MRI never happened because I couldn't tell them with certainty that I wasn't pregnant. So in the meantime, they ordered bloodwork to check if I was pregnant and they sent me for my echo. The echo was quick but by the time I got the neuro floor after,  I saw the doctor coming to see me. "This can't be good".....

He sits me down and tells me the echo shows a massive benign atrial myxoma: A cardiac tumour. It is so large that as the heart beats, it plops down into the ventricle and then back up. A piece of the tumour had broken off and caused my stroke (and very likely caused my numb arm a month ago). So they were sending me to the CCU that night. "So I'm not going home?"

They needed to do the trans esophageal echo (TEE) to get a better look. I will just say that this was quite traumatic and I bit the doctor shoving the camera going down my throat.

In the CCU I met with the head of cardiac surgery at the hospital. He contemplated operating the following morning but my right hand was getting better daily and he wanted to give it one more day to heal because it would regress a bit with the surgery. I asked him how many of these surgeries he has done. He tells me "2 a year". So, as politely as I could, I asked if I would be better to go to a larger hospital where they have more experience. He was very kind and told me I was more than welcome to, but even large centers won't see these much - and if they do, each individual surgeon will only have done a handful a year as well. No matter how I looked at it, this was a rare surgery and I had to make a choice. Keith and  I both felt good about this surgeon. He explained how it is removed and we had 36 hours to wait....

Those 36 hours flew by. Friends and family came to see me. I got special permission to have my kids come and see me in the CCU and I passed the day away as best I could. At night they did a lot of OR prep and Keith, being such a lovely husband, washed my hair in the sink because I couldn't do it for myself. At bedtime they gave me ativan and I slept well. In the morning, they gave me valium: as a result the next morning is nothing more than hints of memories: Me bartering with the surgeon to not use staples on my chest and to use 2 chest tubes instead of 4; saying bye to mom and Keith; dry heaving on the OR table.....and then waking up in excruciating pain.

I have to say that cardiac surgery is by far, the most painful thing I have ever experienced (And I'm including my back labour with non-functioning epidural). I have such respect and appreciation for Noah and his experiences now. There were days where I just wanted to die and would tell anyone who would listen. Even now, 8 days post-op, I can't begin to describe the excruciating rehabilitation that is involved.

I don't have clearly formed memories from the 5 days post-op in the hospital. Keith and Mom fill me in. Apparently when I woke up (after they extubated me) I informed my mom I was going to work on Monday. A while later I asked her if I was still pretty. I also apparently was clearly informed of my care: I told keith I was in Junctional rhythm and that my chest tube was only draining 65cc (I don't remember any of this). I do remember Keith feeding me ice chips, getting loaded up with pain meds and my mom and Nik coming to see me. Nik blowing up and popping a rubber glove which I swore stopped my heart.

It is hard knowing what it coming in your post-operative course, and having worked in cardiology I knew what was coming and I was dreading the removal of the chest tubes. They came out on day 1 post-op: oddly they felt good coming out because I couldn't breathe with them in.  Pacing wires stayed in till the day I went home: I had a junctional rhythm so they liked keeping them in. Apparently the junctional rhythm is a result of inflammation from the surgery. The pacing wires hurt more than I expected them to. I had an arterial line, central line and IV in as well. I'm quite battered from those!

Keith was a constant figure at my side. He had taken the kids to school daily but he would come for visiting hours and stay as long as he could, even though I would doze or cry or go for tests.  He would leave to pick the kids up and then come back after he put them to bed. He would make me tea, set out water for me at bedtime, he came and gave me my first shower post-op. He had mom's help at home but I know he shouldered a lot during this time. He lost his vacation time to be with me. This man really understands what it means to love "in sickness and in health".

On the day I was supposed to go home, I woke up vomiting. As a results my discharge got a bit delayed. Not sure why I was sick, but i was not thrilled given the last time I threw-up it was 1993. Yeah.....19 years ago. What a streak I had going!

Rehabilitation is long for cardiac surgery. I can't drive for 6 weeks, so I have to have someone here with me to take me to have my twice weekly blood work and my physio for my hand. The stroke complicates things and as such, I am very reliant on my family. The first day home I couldn't go up the stairs without feeling like I was short-of-breath, but a few days later I can do the stairs better. I am sleeping in a chair at night because to sleep on my back feels like being 9 months pregnant and sleeping on your back. Last night was the first time I showered alone. It is exhausting and took me forever, but loosing your independence is humbling and I was happy for some control back.  I notice I can do more and more every day. I can't walk far yet but I am getting better for sure. Being healthy before surgery you don't really believe your body will take so long to heal, but it does and its frustrating!

Today I went to emerg because one of my chest tube sites is getting infected. Knowing the issues that can come from that, I decided it was best to just deal with it early. So now, I am on too many drugs to count (I actually got a pill box!): keflex for infection, coumadin and baby aspirin for clotting, iron for low hemoglobin, percocet and tylenol for pain, gravol for the queasies, enoxaparin injections....

I have no appetite, except for lasagna for some reason. It is the only thing I can stomach. Thank goodness we had some in the house.

So now, I have a long sternal incision from my throat to the base of my xyphoid process and two gaping chest tube holes underneath. I know these will fade but I have NO clothes that don't show the scar. I wish I was someone who could wear it proudly but I'm vain I suppose. I hate it. I look forward to when it fades away but will always wish it wasn't there.

I feel this experience should make me grateful for life and for being saved, because quite frankly, if not for the stroke I very well would have died one day soon. The tumour ended up being 7cm x 4cm. The heart isn't much bigger than that. However, I am mostly resentful. I know that sounds bad but look at the top of this blog: in the past 4 years we have had 3 open heart surgeries. We were finally planning a family vacation in August. We were feeling like our lives were turning around. Keith and I have been dealt a poor hand in health it seems and as much as I wish I could be an optimist or a positive person I will not lie. This sucked, I'm angry it happened. I am sad my husband has to take care of me and the kids because I can't. I am furious that someone feels we need to be punished in this way. I will say, however, that I am thankful to the nurses and doctors at the hospital. I am blessed that I had the brains to return to the OR to look into the stroke. I am very happy that the surgeon gave me my life back. Because when all is said and done I didn't want to die young and now hopefully I won't.

I went back to emerg: I was in atrial fibrillation and my heart rate was 178. It felt horrible - like my heart was beating out of my chest. They left me in emerg overnight outside the very loud nursing station. I fell asleep somewhere around 5am. At 7am I was woken by a doctor. Eventually they moved me back to the CCU telling me they would cardiovert me. I was in tears and had a big-time panic attack. I was not thrilled with the prospect of being shocked into normal rhythm. The nurses were kind and explained that I would be sedated. At 2pm they sedated me and tried but my baseline rhythm was an unstable junctional rhythm and I went back to atrial flutter. After that, they decided to load me up on amiodarone and try again in 24 hours. They gave me 2 boluses IV and oral. During the second bolus, my mom was kissing me to leave and my heart stopped for 5 seconds. I can't even begin to describe how awful that felt. Then it happened again. That, along with the unstable junctional rhythm meant I had to get a pacemaker. I was booked for 8am the next day.

Getting the pacemaker was a very traumatic and stressful ordeal. They draped my face with a cloth and put an O2 mask on. I am really claustrophobic so I had to ask them to take them off my face as much as they could. Then I could feel everything. They had to numb me 5 times. I also kept panicking and so they very heavily sedated me but it was never enough. I lay on the table sobbing, begging to sit up, and eventually asked Dave, the nurse I could see, to hold my hand. I was so scared. I didn't want a pacemaker and I was upset. I cried all the way back to my room and then for hours afterwards.

They decided to try cardioversion the next morning again and the doctor was positive it would work. When I woke I looked at the monitor: HR 60. Oh my goodness it worked!!! I cried and was so happy. They were even letting me go home that day! However, I couldnt sit up without being dizzy and my BP was very low (70/40). I started vomiting and asked them to set my pacemaker to 80. I have always had a fast heart rate and they agreed after and echo. That night, when my BP was up again (95/60) they let me go home. I should have stayed because I felt nervous being home but I have a pacemaker apptm in the morning tomorrow.

So that is the experience - it sucked. I wish it never happened. I will come to terms with it eventually. Just not now...