Exercising 16 Days after Open Heart Surgery

Lots of people tell me I am doing too much this soon after my open heart surgery. My surgeon believes in "you're out of the hospital, now, it's up and at em from here on out!". He thinks driving is too much, lifting more than 15 lbs is too much, vacuuming is too much, but house chores, walking, making yourself breakfast and showing up for cardiac rehab every day of the week is normal. 

I push myself to do some things, because activity is also said to help with eliminating the lung fluid for which I still have a drainage tube attached to me, but I do tire easily, I won't sit here and try to be a hero and tell you otherwise. 

This morning, I cooked a full breakfast, for my husband's birthday, for three people - hashbrowns, cheese eggs, bacon and toast, with minimal help from my mom - I can't bend very well, to maneuver the trays in the oven. And I am pooped after all that ... 

When I go to cardiac rehab, which is light for right now (10 minute arm and leg warm-up, 10 minute treadmill - very slow and no incline - 10 minute rest and 10 more minutes of treadmill), I am pooped, again. But I make myself do it, and I try not to think of how tiring it is. Eyes on the target, I go through the motions, and when the exercise is over, I reward myself with a magazine read or a short nap. 

Climbing up the stairs is still the shortest and more strenuous thing I have done since surgery. I get to the top of my stairs almost completely breathless. 

My tube being in my ribs is still the culprit for my shallow breathing. And as you know, if you can't breathe properly, you have no stamina. I feel like once that is out, I will be able to build more strength and do lengthier exercises and with less interruptions. Till then, I am in the baby steps phase, with only small (short) bouts of energy, like cooking the breakfast this morning, every once in a great while.  

Post-op: Appointments and Balancing Meds with New Lifestyle

Since last Friday, when I was released from hospital, it's been a very careful balancing act between trying to get used to my new body, my new (temporary)  meds, my new (somewhat) diet, and joggling more doctor's appointments in a day than ever before. 

After the release from hospital, there is a mandatory followup appointment with the surgeon's office, where they inspect your incisions and make sure you're progressing as expected (breathing-wise, no infection, drainage tube, etc), then another appointment with your cardiologist, where you get on a new schedule of appointments with him (mine were every 3 months before surgery, it is every 2 weeks now), as well as new appointments for the lab (weekly) where they must check your INR. Your INR is the number that shows how much your blood clots. With an artificial valve in your heart, that number needs to be higher than the normal person (normal person is around 1, mine needs to be between 1.5-2.5, even according to others, even 2-3), so the blood will clot less.

So, that's pretty much been the spend of my days since Friday. 

My drainage tube is still attached to my right lung. My rib cage hurts so insanely strong I cannot breathe correctly, so I have not been doing my breathing exercises quite as expected. They added some muscle relaxers to my cocktail of meds today, along with my percocet for pain, so hopefully going forward I'll see some relief. 

I still have numbness in my left leg and arm from the surgery, as well as soreness in my chest, from my sternum incision - which is all normal. 

I am really grateful that I am eating just fine (although smaller portions, sometimes), and I am sleeping in my own bed (albeit reclined pretty steeply) and  for the most part my mind is clear. 

An interesting find during all my appointments is that every doctor, nurse, medical staff is asking me whether I am depressed because I am now going to be on "so much medicine" for the rest of my life. I kind of chuckle, because the only thing that they added to my drugs after this surgery is the coumadin (the anticoagulant) for my artificial aortic valve. The beta blocker, the statin, the zetia, the daily aspirin have been my daily mainstays for at least 18 years now, because of my FH.

Thank goodness for some sense of normalcy, you know. Nothing else seems or feels normal everywhere else in my body right now. 

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.

The Day Before Open Heart Surgery

As I mentioned before, here (http://livingwithfh.blogspot.com/2016/01/the-importance-of-connectedness.html), I have joined a forum for heart valve patients (http://www.heart-valve-surgery.com) when I found out that my open heart surgery is imminent, to replace my aortic valve. I have a journal on that site, where I recount the day to day life during this heart disease and heart surgery journey. What follows here is mainly what I posted on that site today.

As FH will have it, my surgery has gotten a bit more complex than just the aortic valve replacement. Due to atherosclerosis, which is a side effect of prolonged high cholesterol in our arteries, there are several other things that will be done during my surgery tomorrow. Just read along. I will explain.

Today was pre-op day. You go to the hospital for several hours and you do a number of things:

- blood tests, urine tests, chest X-ray, EKG, as far as tests go;
- you also meet with a nurse who will go over the pre-surgery instructions with you: when to shower, how to shower, when to shave, when to disinfect, what meds you're allowed to take; what meds you need to skip before the surgery (which is tomorrow)
- then, I also met with my future cardiac rehab counselor. This is the lady who will work with me to build up my stamina, after ICU, so I can eventually be released and go home. She talked to us for almost an hour and she explained EVERYTHING. Very informative meeting.
- then, we also met with the surgeon. He scheduled the surgery for 8 AM tomorrow, and I will be his only case that day. He will also be assisted by two other surgeons in various portions of the surgery.

The "menu", as he once put it, for my surgery is this:

- replacing my aortic valve with an ON-X valve
- replacing my ascending aorta with a Dacron graft
- a double by-pass on my LAD and OMB arteries.
- he fourth item (reconstruction of the aortic arch) is still a "maybe" although he said he wants to walk in the OR thinking it's a definite.
 
So, if that happens, then the circulatory arrest and the hypothermia is back on. I am not a fan of that, but I also want him to open me up just once and not have to do this all over again for the aortic arch in a couple of years. But as of right now, we're not 100% sure if this will be done or not.

Without the rebuilding of the arch, the operation will be about 5-6 hours. With the arch, it will be more like 7-8. Either way, he's planning for a whole day.

I am not allowed to eat any solids till 11 PM tonight, and I am not allowed to even drink anything after that, into the surgery tomorrow. I am on a beta blocker right now (atenolol, been on it for 19 years), but they told me to not take it tonight and tomorrow and just take metoprolol instead.

The surgeon asked me again if I made any plans with my cardiologist about being on the PCSK9 drugs when all this is over. He said he will repair most of what is broken around the heart, to give me a good pumping life ahead, but with the cholesterol still outside normal ranges this disease (atherosclerosis) will continue to progress. I told him that my cardiologist and I did talk about it and we will explore the affordability and the risks for sure when I come out of  the recovery.

Now, back to the surgery tomorrow: I am incredibly at peace with this whole thing. I am looking back at my December self, when I was picking valves and worrying about how coumadin will change my life, and worrying about dying of a stroke during surgery and never seeing my husband or my family ever again; and now, with everything else in the picture, knowing as much as I think I can know about everything, and hearing all sorts of stories from real patients, AND having met my surgeon and having complete faith in him and God, I am ready to do this.

Especially after the surgeon giving me an honest to goodness bear hug today, and telling me several times that I'll be fine. We can do this. We'll be fine. He has always been talking about me and him as a team, in the short time we have known each other. I love him. I am really, really lucky!

I figured: I cannot control this, technically/ mechanically. The ONLY way I can control this is if I train my body that we got this in the bag! We (me and body) are fit and healthy, otherwise (sure, my cholesterol is high, still, and I have atherosclerosis all over my body), but I live a full life, I work a full time job, I eat right, I don't smoke, I feel like physically and mentally I am in the right spot, so we can go through this (my body and I) and we can work beyond tomorrow to get better and recover. 

From my yoga practice, I am way too familiar with the "monkey mind". The mind will always try to take control and make you think of things that are not and will never be even real. But if you train the monkey mind, you can quiet it down, and teach it that all good is still to come, and you can make it work with your body to seek nurture which will lead it to health. Just breathe in and breathe out. And ignore your mind, like you ignore an unruly child. It will eventually stop taunting you and that's where you find your peace.  All else will fall into place.

Anyway, it took me close to two months to get here. But once I got it, I am ready to climb this mountain, and plan the rest of my life!

I will say that a key help in my journey to today, "the day before", has been my family, friends, and co-workers. The encouragement and prayers and "atta girl"s and "you're strong, Alina"s that they have sent me incessantly have motivated me to know that I have SO MUCH to live for. I might come out of this with complications, even long term problems caused by strokes or whatever ... but I know one thing for sure: I am not ready to die yet. Now, God might still have other plans, but if I can help it, and if He allows me, I will come out and fight this to my last blood drop, to get better and live  a full and healthy (whatever "healthy" means to me) life.

And last but absolutely definitely not least: the "heart-valve-surgery.com" site as well as the Bicuspid Aortic Valve Heart Condition site on Facebook  (https://www.facebook.com/groups/BicuspidAorticValveHeartCondition/?fref=nf) , those communities, all the patients recounting all their stories in detail, and all their triumphs have kept building up my mental strength as well.

On the medical, and technical aspect of this journey, THIS was the biggest help for me! Just being able to relate to symptoms and doctor's visits with all the other patients has made this sound and feel more familiar - and this is such a blessing. 

Social media is amazing. And I am grateful for people that take the time and put in the effort to update these sites, so people like me can learn from your experiences. I only hope that one day, I'll do the same for others.

Talk with you all "from the other side of this Rubicon" as my dad put it tonight.
Much health, you all, and may God bless your own journeys!

Some Things You'll Have to Do

Today is the day before the pre-op appointment for my open heart surgery. Pre-op tomorrow, surgery the next day.

I took the day off today, to get ready for tomorrow and, to some extent, for the surgery day, too. Alongside some house chores and family and friends' calls that I had to make, I had lots of paperwork to fill out. Just something to know, in case you're wondering. 

There are HR papers from both my and my husband's work (some of it cannot be finished, because the doctors will have a piece to fill out, too); there are also online forms from the hospital that need to be filled out before the pre-op. These are pretty much similar to your standard doctor's office papers, where they ask you about your health history, your allergies, medications you take and the likes. There are some religious affiliation questions, and spiritual practice guidelines added to those, as well.

Then, I had to call my insurance company for extra assurance that the hospital and my surgeon are covered by them - and they are. I checked this months ago, on their website, but we all know that websites can be out of date. I needed the reassurance of a live person to tell me that they do indeed cover the hospital and the surgeon for this.  I also wanted to check if the cardiac rehab after the surgery (something my surgeon strongly suggests I'd follow through with) would be covered, and it is. Up to 36 visits for cardiac rehab are covered.

Once I called them, they asked me if I want to be enrolled in this nurse program, where they give you a hotline with a registered nurse to call and ask any questions of, during recovery. If something looks or feels out of the ordinary and it's the middle of the night, they can save you an ER visit if you can speak with them and just run your concerns by them. They also give you a case manager that will stay with you, through regular phone appointments, after cardiac rehab will be over, 6, 9, 12 months from surgery. I guess I did have selective listening at my work's benefits meeting, or selective reading when I read our paperwork, because I didn't know this is a free benefit that we can take advantage of. I am hoping I would gain some insight from someone who is familiar with my specific needs (sort of like your primary care physician, if you have a good one) on how I can manage this disease better. 

I did use a similar program years ago for my FH, and it helped with staying on top of what were the new guidelines, for treatment, diet, exercise regimen, etc. 

Outside these, I also made sure I have my end of life directives handy, to leave at the hospital, to add to my chart, as well as my power of attorney and my funeral arrangements. Of course, I am not planning for any of this to happen, but if it should, everyone in charge of taking care of me will be so emotional as it will be, that I don't want them searching through our family safe for answers. Just something you can do now, for them, while you can, and something they won't need to worry about if the time comes. 

So, a full day or desk-bound activities while you put all these in order. Just something to be aware of. 

One Day at a Time

I am sure that in the days to come this title will take on various meanings. 

My open heart surgery is less than a week away. It is still very surreal. Although I have known deep inside that this day will come, now that it's here, it's still come as a shock. As early as December 14 (that's less than 2 months ago), this surgery was not a reality yet. My dad is 62 and he's never had his chest opened. My grandfather died at 62, after several strokes, but no heart surgeries, either. 

I guess, in a way, I was thinking, whatever FH does to us is a little bit more unexpected than a "planned" surgery. Luckily, this will not be my case. Everyone that's had heart surgery before would agree, I think, that you do want to plan for this thing and walk into the hospital on your own two feet, rather than be rolled in on a stretcher. 

I have worked full time through this time, and I have rolled with the punches so far, of one grim diagnosis after another, with some slightly lighter ones in between. I have done research, I have joined forums of people who have lived through this, I have gotten closer to many a-family and friends. I have been ever so grateful to see so many people cheering for me. Through it all, I am nervous, I am feisty, I am grateful, I am enjoying every waking moment of a new breath with no chest pain, and I am even grateful for some of the days with pain - it means I still have a heart and it's letting me know it's there. 

I wish I can give some advice in a situation like this, but I have none to give. If there is one thing to say is this: as always, as with everything, stay true to yourself. Allow yourself to be who you are through this roller coaster of trying to come to grips with this. No matter what people tell you, good or bad, look inside yourself and decide what you want, with no judgement, with no label: you want to cry - cry. You want to laugh and enjoy the moment - do it. You want to have one last decadent meal - go for it. You want to say your goodbyes, write them down. It helps to get perspective this way. Whatever it is, it's your body, your health, your stress to manage. Everyone else, no matter how qualified and close to you, should butt out. 

In the next few days, I am taking it one step at a time: sleeping in on the weekends, watching cheesy Hallmark movies on TV, going out to dinner with my husband, calling family, reading, praying, meditating, searching for God in the pit of my chest. He's there. Beating away. I have one more work day to show up for, and then, I'm taking a couple of days to process paperwork (including my directives for a memorial/ funeral or lack thereof) and to go to the hospital for pre-op tests and one last visit with the surgeon before the "big day". 

I feel an eerie calm, like before the storm, you know. But I'll take it. I'm also enjoying twisting and turning in bed at night, loose and flexible from every bone and joint in my body. I will miss this the most! 
 

Setting a Date

I got a call from my surgeon today, to follow up on the CT scan from yesterday. The CT was needed to "tell exactly" how bad my blood vessels in my chest, neck and base of head are and whether they need grafting, bypassing, what have you, during the same surgery as the valve. His focus was mostly on my aortic arch (slightly enlarged) and my carotids (with blockages of anywhere between 70-90%). 

He said the CT was actually better than he thought, after seeing my angiogram. Now, he thinks he will definitely not touch the carotids (or rather he will not engage the vascular surgeon for the carotids, which have deposits, but no occlusions) and he might not replace the aortic arch (yay for possibly no deep hypothermia and circulatory arrest!). He says the arch looks pretty good, and not "like porcelain". If this verifies when he opens me up, he will not redo it, he will just keep an eye on it yearly.

The new list of procedures during open heart surgery is:

- aortic valve replacement (with ON-X valve)
- ascending aorta grafting (mine is completely calcified and has a small aneurysm)
- 2 bypasses of the LAD and OMB coronary arteries
- aortic arch replacement to be assessed at the time or surgery, but no plan to replace it as of right now.

Without the last one in the picture the risk for stroke will go down, somewhat. In my case, because of my FH, and because of my atherosclerosis,  the risk of stroke remains significant.

This is what I know today ...
Oh, and also, probably the most important bit: he still wants me to do the surgery sooner (next week) rather than later (March), so surgery date set for next week on Thursday.  Preop day is February 10.

I hope this will be my next appointment, but not sure. I do want to call my cardiologist tomorrow, because I am very sore from my angiogram, something that I don't remember being last time they did this.

And there it goes, another day behind us, on this crazy journey.

First Appointment with the Surgeon. More Tests. FH, How I Hate Thee ...

Today was the first official (I hope not the last) appointment with the surgeon. I really like him, he seems thorough and very empathetic, and very self-assured in his ability to give me a good life after this. He's also very open about the risks this surgery poses and those are all I can think of! 

In brief, this is the lowdown: 

- my mitral valve is fine; no surgery needed there.
- my aortic valve will be replaced.
- my aortic arch is so full of calcification that it will be replaced as well as the aortic root (which is between the valve and the actual arch).
- my LAD and OMB coronary arteries both have blockages and calcification in them, so they both have to be by-passed.
- he thinks potentially parts of my carotids will be also grafted - the CT scan I did today following his appointment will tell more. 

This will be a complex surgery, to say the least, but the piece that is the scariest for me is the aortic arch replacement. For this, he will use a technique called deep hypothermic circulatory arrest (https://en.wikipedia.org/wiki/Deep_hypothermic_circulatory_arrest), as well as he will use my venous system to feed my brain with oxygenated blood, so that he can buy himself some time during the hypothermia (the human brain cannot take more than 30 minutes of extreme hypothermia before it starts becoming damaged). If the cracking open of the chest was not scary enough, this just takes it to the next level. 

He also thinks we need to move the surgery up, and the original date I was shooting for (March 1) is too late. 

We spoke mostly about my FH history, how we got here, why we got here, and about the surgery itself. He is convinced that because of the FH, and if he is not replacing it now, my aortic arch will continue to deteriorate and I will have to have it replaced at some point in the future, but he would rather not open me up twice, if he can help it. My aortic aneurysm is not huge, but my arch calcification is significant, so he would like to replace the aorta now, with this surgery, even if this makes the surgery longer and more complex. 

As you can imagine, I am terrified, but what choice do I have? I am hoping that no brain damage nor death will occur with this surgery, but of course, there are no guarantees. The risk is about 15% for brain damage, in various degrees of severity and recover-ability.  Also, the surgery alone has a relatively high risk for stroke. Because of my FH, and my arteries being blocked in various parts of my system, the risk for stroke is higher. He will take precautions against all this, but there are risks, with everything.

After the appointment with the surgeon, I did get a CT scan of my chest, neck and base of my head vessels, so we can tell for sure of the amount of calcification in my carotids and other chest vessels. I will want to meet with him, again, face to face, before penciling in the date, just because I have so many more questions to ask ... I feel like if I know more, my morale would improve, although the more I know, honestly, the more I want to know less.

Although I have been reading about all these complications from FH all my life, this is all still surreal. I am still in shock as to how fast it all went downhill, after years of monitoring, dieting, drug therapy, etc ... 

I hope you all find this journey useful and learn something from what FH can do to us, 
eventually. 

To all, much health!