Open-Heart Surgery: Day 1 to 8

This is the story of my open heart surgery and the days that followed in the hospital, all the way up to returning home, a week and a day later. I am writing it from memory and with the help of my husband, who fills in the blanks of when I was under anesthesia. I hope someone will find it helpful one day.

February 11, 2016

We woke up not so bright and early at 4 AM to get ready for surgery. For some reason, I was insanely, surreally at peace that day. For months, I have cried, and lost sleep and prayed and hoped I won’t die. For some reason, that day, I was ready to climb my Everest.

I woke up, took the careful shower (no shaving - risk for infections. Let the OR people shave you, were the instructions in pre-op), bathed myself with the super strong disinfectant surgery wipes all over my body, and waited in the kitchen downstairs for my husband. It was still, early, dark and very cold. And quiet, to let me be alone with my thoughts.

Like I said, I was ready! All the emails were sent out, all the paperwork for end of life directives, all the ‘see ya’ later’-s sent out to distant people, and we were ready to roll towards the Utah Valley Regional Medical Center in Provo, UT to meet with the surgery team and get a new redo on my heart.

To begin with, as a reminder, they had this “on the menu” for that day:

• replacement of my aortic valve with an On-X Artificial Valve (less coumadin this way, hopefully, and no re-operation)
• reconstruction of my ascending aorta
• a double bypass, in my LAD and OMB coronary arteries
• possibly, either a cleanup, or an entire replacement of the aortic arch (the latter of which would have required circulatory arrest, to be able to feed by brain with oxygenated blood through my venous system - a very risky procedure with a higher risk of strokes)

After checking in, they took us in the back, and gave us a room. They collected blood (again!!) from me and then urine, too, although they did this just the day before. They have you strip down and get a hospital gown, pants, and socks, then they put you in a bed on wheels. The urine test showed that I had a urinary tract infection. For the love of Jesus, what in the world, I thought? I have been SOOO careful and paranoid about not getting colds, infections and the likes and I had NO symptoms - what are they talking about?! Anyway ... they hooked up an IV with a bag of antibiotics which will be given to me throughout the day to prevent the spread of infection.

My husband stayed with me. We took pictures and told jokes. The mood was light outward, but we were both visibly nervous.

My surgeon came in around 6.00 AM or so to tell us he’s in a meeting till 8 AM, and that’s when the surgery will start. He is the chief of staff of this hospital, so I can only imagine what kind of schedule he has. He told us again that he expects the length of the surgery to be around 5-6 hours minimum, and 7-8 hours max, with the circ arrest. He was kind, warm and encouraging. He gives the best hugs, too.

Around 7 AM I think, they wheeled me into this common ward area where beds were separated by curtains. My husband was not allowed beyond that. We said ‘so long’ and I could feel him shaking. I prayed to God this was not going to be the last I see of him.

I went into the common anesthesia area and a nurse came by to go over all my medical records with me. She then told me a little bit about the surgical team the OR nurse, the other doctors and staff. Then, my anesthesiologist, his PA and the OR nurse came in to talk with me, and we went over my history, my chart, my surgery, what their role will be and the likes. It felt like a really well put together, cohesive team. They joked around, but they were also respectful of my situation and emotions and answered my questions about everything I had.

The anesthesiologist himself put in my IV which will be in my wrist till the day of my release, if there are no complications, and he also connected this catheter inside an artery into my opposite wrist, in which they place a blood pressure measuring device - they need to get an accurate reading of your blood pressure, right off of your artery.

Between the talking, IV’s, jokes, smell of alcohol as all these needles and things were going in me, I remember falling asleep. The OR nurse's thick Australian accent and the anesthesiologist's braces are the very last thing I remember before I woke up in the Heart ICU ward in Provo. Absolutely nothing in between.

While I was asleep ...  

My husband was taken into a waiting room outside the OR area. He was told he was going to be given hourly or so updates about my state, the state of surgery, and other details. He was kept informed throughout the whole day and he could email friends and family updates on everything.

During the day, he even had a visitor, to cheer him up - and it just so happened that the visitor picked our song to play on his ukulele, not even asking for suggestions on what to play. My husband cried and he knew this must be a sign that it will all end well since this stranger just looked at him and started playing our song.

The surgery ended up lasting a little bit less than 12 hours. Remember when the surgeon said it’ll take 8 hours max?! They did the aortic valve replacement, the aortic reconstruction, a quadruple (instead of a double) bypass, and they did clean out my aortic arch which was all full of calcification - “some of the worst the surgeon has ever seen”, in his own words. Although atherosclerotic, the arch wall was healthy enough to accept sutures from the Dacron graft of the new artery onto itself, so it did not need to be replaced. I was in circ arrest for 38 minutes and on the bypass machine for a bit longer than 10 hours. The surgeon said my heart started immediately back up, when it was time for him to turn it back “on”.

They harvested an artery from my chest wall, and a vein from my left calf for my bypasses.

My husband said that when they brought me into the ICU, they allowed him to come in the room with me, although against protocol, because the doctor felt he had waited enough. I had the breathing tube down my throat the first time he saw me, and I thankfully don’t remember any of it. I have pictures to prove it though, as I requested from him, before I went in. My husband tells me they tried to take me off the tube several times, for about 2 hours and I did not breathe on my own yet, so they kept putting me back on it. The surgeon normally goes off and sleeps during this time, but my surgeon stayed at my bedside with him the entire time. The breathing tube finally came out and the surgeon started giving me commands to follow. We all knew the risk of stroke was high to begin with and with my FH brain it was even higher. He knew my number one concern was how will my brain fair during this surgery. Plus, it’s I guess routine to assess neurological abilities of any patient after any surgery.

My husband tells me I followed every command beautifully, not screwing up at all, and that during the whole thing he was holding my hand. The surgeon jumped in the air and said “YES!” when I followed his last command. My husband also says I kept saying during this whole time, as I was coming to, “Dr. Mitchell, you killed me!”. I have zero recollection of all this. Not a clue about any of the commands, breathing tube, my husband in the room, or anything else at all. I wish I was more there to join in their joy at the time, but I am also very grateful I don’t remember the tube, the pain, or anything else negative, either.

Coming to ...

I remember coming to in the ICU ward in the middle of the night, sometimes on February 12, 2016. I could not tell you what time it was, other than it was night and I had at all times 3 people hovering over me. I remember, they left my door wide open and they pulled a desk in the door, so they can see the rest of the floor and watch my machines at the same time. All I had to do was wiggle a little and someone was right there to ask me what I needed.

I asked where my husband was. They said he went home, because he was there for a really long time. My next question was: “did they do my arch? The first answer was: they DID do your arch. You had a BIG surgery - 12 hours and they did the arch.”. One nurse did come back and said “they did NOT do the the arch” at some point, which confused me. They kept telling me I was great because I had been on the operating table for 12 hours and did fine, but that now I needed to rest. I remember talking a lot, but basically asking the same questions: is my brain OK?, did they do the circ arrest?, am I OK? - they kept saying all is fine, and I was in circ arrest for 30 minutes or so. They told me “Dr. Mitchell did a great job. He was here very late. You’re doing good”.

My throat was scratchy, and my lips were on fire,  so I asked for water. This ICU angel nurse came with ice chips. I never ever, EVER crush ice in between my teeth. I can’t even stand ice to touch my lips, when I sip it from a glass - I always need a straw. She put an ice chip in my mouth and it was the most wonderful thing I have ever tasted. It melted slowly into my harsh desert lips and, it was unbelievable. I asked for more. She kept saying she’ll give  me more but one at a time and I can’t gorge on them yet. She alternated with water sips from an ice water jug.

The first night in the ICU is a huge fog. I kept asking over and over again if my brain is right and if my circ arrest happened. I just could not believe it all happened, because I remembered nothing. One way in which God works in miracles, that He allows people to find drugs to do this sort of thing to us ...

ICU Stay

The first day in the ICU is not much different from my recollection of most of the first night. Very foggy, lots of people in the room, worrying, lots of pokes, needles, but not much feeling at all. And lots and lots of yummy ice chips.

I remember struggling with the bed. A lot. They keep lifting you up to the head of the bed using your sheet, and gravity just pulls you down towards the foot of the bed. And your ribs end up in this crazy uncomfortable bunching.

I realized pretty quickly that I was connected to millions of things, but they had people around the clock around me, and they helped me with anything I needed, so nothing I was connected to was ever in the way of what I wanted to do.

I was not allowed to eat in the first day, but I was allowed to have plenty of ice, water and jell-o. Pretty early in the day, I realized that my entire left leg as well as the pinky and ring finger of my left arm are completely asleep. Millions of pins and needles in them. They kept asking me to move them and I moved them fine, but they were all numb.

The pain was mostly in my back and ribs. I kept asking why is my chest not killing me more than my shoulder blades and ribs. They said, the back will hurt for a long time because I was in the OR for a very long time on my back, in the cold. They said the ribs hurt mostly because of the drainage tubes that are going through them. The chest hurt too, but compared with the other 2 pains, it was not even worth mentioning that they did. They started giving me percocet every 4 hours. It completely knocked me out and made me incredibly nauseated. So, they gave me zofran for nausea, too, which made me extra sleepy. So, in the ICU I was either very foggy from drugs or just numb from pain. I slept throughout the day, on and off, and sometimes I would just fall asleep with people just talking at me. I could not control this.

On the first day, the cardiologist came to visit (he visited with me during my entire stay), the surgeon did too, as well as one of his partners who helped in the surgery and his anesthesiologist, my respiratory therapist, people from cardiac rehab who wanted me to walk, good grief!, and lots of other people I am sure I am fogging out right now. The surgeon gave me the rest of the Dacron graft he did not use on my aorta. It was surreal to touch it and bend it and to know this ‘elastic looking white thing’ is now allowing for blood to circulate free of obstruction out of my heart.

There is the surreal feeling of being content in the first day after surgery. You just realize how small you are and how you’re really in no control of what’s happening to your body at all. Not even 1%. You just give the staff the best feedback you can so they can adjust things for you so you can be comfortable. You have zero expectations, or at least I had, and you just slip from one minute to the next and before you know it, you’ve lived a day in the ICU.

I was allowed to stay in the ICU an extra day, because of the length of my surgery, the complexity and the amount of anaesthesia they did to me, that had to clear out of my system. I was so grateful for that, because I was not ready for anything else other than lay down, sleep and eat ice.

I did walk the first night in ICU, up to my door, and back which was about 40 feet total, they said. I was holding on to a wheelchair, while 4 other people were assisting with the various things attached to me - IV’s, bladder catheter, 4 chest tubes, you name it. It felt like I climbed Pike’s Peak!

In the first day in ICU, they took one catheter out of my neck and two tubes out of my chest. Honestly, I did not see a difference, because my back, ribs and chest still continued to hurt.

In the second day in the ICU, they took out the pacing wires from my chest (they connect your heart with pacing wires and they leave them sticking on the outside of your chest, in case they have to restart your heart. They considered I was passed that point in day 2, I guess), and two tubes out of the chest as well. Again, I can’t think of any relief that gave me. Ribs and back were still in spasms.

I was also told I was given two blood transfusions during the surgery. And now, they were trying to regulate my coumadin, on which I will be for the rest of my life. The first reading for my INR (they want it to be between 2-3) was 6.6. The second reading was 10.9. Everyone was in shock. They started me on a “low” dose of 5mg of coumadin and they could not understand such jumps. They stopped the coumadin for a couple of days after that.

My blood sugar was also all over the place during the first two days - they had to give me insulin daily to stabilize it, and I was not even eating anything.It’s just your body’s natural response to stress.

Since I woke up from surgery, I was continuously burning up. I kept asking for ice packs. I had up to 4 of them on my body, on each limb, and my room thermostat was set at 65. People were wearing coats in the room and I wanted my blankets off. My body temperature, though, was fine, thankfully.

Day 3 - moving to a regular room

The surgery was on February 11. They moved me to a regular room, and outside ICU on February 13. I was terrified. Was I ready? I had my own staff around the clock till now, and now my nurses and techs will be shared with 10 other patients. I was still in much, much pain and slept poorly because I kept sliding down my bed all the time. I found that being reclined hurt less, but that also made me bunch up my ribs and hurt more. For sure no one will have patience now to listen to these details.

They took the bladder catheter out the day they moved me (which meant now ... I was on my own for bathroom needs! Joy!). They also removed the remaining two catheters out of my neck, too.

So, in case you were counting, I had (that I remember!):

• three catheters in my neck
• four chest tubes draining fluid from my chest
• pacing wires
• bladder catheter

By the time I went to the room, I had two chest tubes left, each one draining fluid out of either of my lungs. The ribs were killing me. And now, they want you to do your breathing exercises using a manual spirometer, and to walk - walk - walk every day, laps around the ward and to have all your meals in the chair. Somehow, I had to figure out how not to be in too much pain to be able to take deep breaths for the spirometer, as well as not to be too loopy from drugs numbing the pain which made me fall asleep right away and not want to do anything. Because of the pain in my ribs I never did more than 650 on the spirometer, which made me feel like a failure.

I started experimenting with a combination of narcotics and narcotic free pain drugs, because I did not want the fog. I just wanted the pain to stop. But anything they gave me that was not a narcotic did little for the pain. So, I was back on percocet, taking 1/2 every 2 hours or so (longer gaps at night).

Between February 13 and February 18, all those 5 days, I was on an up again, down again roller coaster, trying to balance my pain, my exercise pattern, my appetite, or lack thereof, and my pain and nausea meds. I needed help to get in and out of bed and when they give you diuretics to eliminate the excess fluids from surgery this means a LOT of help to go to the bathroom quite frequently. They give you compression socks and anti clotting booties that are massaging your calves, to make your blood move. You’re hooked on to those, your drainage tube machines, a holter monitor and sometimes a blood pressure machine and an oxygen meter. You need someone to free you from all that before you go anywhere.

I think on the 15th or 16th, they took my left  chest tube out. That was the larger one, draining from my left lung. I actually did get some relief from the pain then. I was left with one tube in, for my right lung. Now, the pain in my ribs was only on my right side.

A week from surgery:

On February 18, I had been in the hospital for a week. I did not feel up to going home, and my chest was still dumping fluid, but I was wondering if they’re going to send me out anyway.

The night before the 18th of February, I did not feel right. It was more than just a fitful, painful, uncomfortable night. My pulse was mostly in the 100’s and 120’s and I could hear my heart in my ears for the first time. I have not heard my heart valve yet, not even once, but that night, my heart wanted to poke out of my chest. I was lightheaded more than usual. I kept asking the nurse what’s wrong and she just asked me to rest. Finally, around 6 AM, they called my cardiologist and he ordered some tests. In the meantime, the surgeon and his PA came in and they cleared me to go home. I was dubious. They kept saying I’ll go home with one drainage tube, but everything else looks great, in numbers, the coumadin, they thought, is on its way of being adjusted, there is no reason for me to be in there.

And then, the tests from my cardiologist happened, after the surgeon left (and left town). They pulled an EKG with significant changes in the patterns on it, as well as a troponin test which was elevated. They both suggested that there is something going on in my heart to damage the heart muscle. The cardiologist ordered a heart echo in my room.

That revealed that the lower left ventricle is not getting proper irrigation - this is one of the spots of my four by-passes. The surgeon already tried to address this area in the surgery because he saw it not getting enough good blood. But now it showed, it’s still left short. Either the by-pass didn’t work, or it was too little to work fully. Either way, I was having a mild heart attack, where my heart muscle was being damaged as my ventricle was hungry for oxygen.

So, the orders were called around and I was going to stay in the hospital one more night for observation and to repeat all these tests again twice to understand whether the damage that was done has stopped or it’s progressing. As the cardiologist put it: “once your enzymes (protonin) are elevated, they will not ever go down right away - only in a long time, after your heart has found ways to regenerate the damaged area. What we want to see is flat results on these tests”.

And that’s what he got that night and the next morning. So, on the 19th, both the surgeon’s PA and the cardiologist were finally in agreement that I would go home. They had also agreed on my “for now” dose of coumadin, at 1 mg (smallest they ever prescribed, and smallest my pharmacist has ever seen), so they were ready to send me out for a trial run and talk with me next week in my follow up appointments.

Going home ...

I know this sounds scary nasty, but I did not take a proper shower in the hospital. I just did not muster the energy. I used hospital strength disinfectant wipes and personal wipes and washcloths with soap  to give myself a bath every day, I changed my robe and my sheets every day and used deodorant every day. They also used several things to nurse and disinfect my wounds - my main incision as well as the two incisions on my left leg, where they had harvested my veins from.

When I left the hospital I took this as the  visible inventory of the damage done to my body:

• my left foot is still on needles, but they have eased up, or I have gotten used to them;
• my left calf has this invisible patch on it, from the ankle to the knee where I have no feeling, if I touch it; the surgeon said it could take years to return feeling there and to be patient;
• my left foot is completely black as well as the back of my left knee, from just bruising;
• my left hand is completely numb now, with only my thumb pretty mobile; the rest of the hand and shooting up into the whole arm is asleep;
• my chest feels like someone poured superglue on it for a long, long time, and it has now hardened. It feels like it is frozen and it wants to expand with every breath but the superglue forces it to stay small. I can’t burp or yawn, as I feel I am breaking some tendons or something in my chest and ribs; I feel like a lot of tendons are missing or severed in my chest muscles.
• I have small scabbed holes in my chest and neck, from former catheters, as if someone played darts on my chest and front neck;
• the biggest pain is still in my rib from my drainage tube. It’s supposed to be taken out only if the output from my chest does not exceed 100 ml in 24 hours. I am averaging about 150 ml a day with the highest only yesterday of 210 ml, so that tube is with me for a while.
• my throat is very scratchy from the breathing tube, still. I feel like there is flaky skin hanging loose in my throat and I can’t spit it out nor swallow it back in - it’s just there, nagging. Food still does not taste right to me, but I do get hungry and I eat three meals a day, of just normal, regular foods, in smaller portions. My mom is here to cook for me for a while, as I do not dare be in restaurants or eat restaurant food while still healing. It just doesn’t feel safe enough.
• every single breath hurts and every single pore screams with pain, 24 hours a day. Meds help numb it but the pain is never gone - gone. At least for me, the pain is a lot more than I have ever experienced before.
• because of the tube still in me, the pain in the ribs and back is still the harshest one;
• I am still taking 1/2 a percocet every 6 hours for pain, but I should maybe take it every 4?! I still hate the darn fog! 
  

   

Of course, these are the visible things. The missing or replaced veins/ arteries, the damage done by the stitching, the cleaning of my aorta, the uncounted nicked cells and tendons and nerves ... who knows or counts? Each one will be registered as trauma by your brain and it will add pain.
 
But ...

Although all these details are important, I hope, to someone contemplating surgery soon, I think the most important, the most unbelievable, the most miraculous of things is: I am alive! I am breathing on my own, I am sitting up in my recliner typing this with my cat next to me, only 10 days from surgery! I am taking my own showers, going to the bathroom, fixing food for myself. I tire easily and often, and my breathing is very shallow still, from the pain in my ribs. But I do not have chest pains like I used to anymore (from heart palpitations), I have new gear in me to hopefully carry me healthily into my old age. I am not out of the woods, yet, by any stretch, but I feel better now, overall, about the possibility of having a healthier heart life than before.

Before, I was a ticking bomb, not knowing when it’ll go off, either from a blocked artery or from aortic valve completely closing in. Of course, we are all still ticking bombs, as we don’t control what goes wrong and when, but I feel like what we knew it could go wrong has been eliminated.

Most of all, I am grateful and in awe at how miraculous our medicine is nowadays! To go through such a surgery and come out of it on your own two feet is no small endeavor!  I feel, overall, in the big, big picture, like I have accomplished, along with my amazing surgeon and his team, the most amazing feat of my life, besides maybe being born!

It’s a good feeling. And all this painful journey is worth it times 10.