Nine Months and Counting

Two days ago I celebrated 9 months since my surgery and things are well. I have no idea where all this time has gone! I know I was home for three full months after surgery, which (for someone who has never had medical leave before and never took more than 3 weeks of vacation at a time) seemed like an eternity. But now, I can hardly remember ever being home. I have been back to work for 6 months now, and it's all a routine again. 

I have no words to describe how incredibly grateful and humbled I am that I am here today, typing this. Although I am not the same person, physically (in so many ways) that I was a year ago, I feel well, and I am adjusting to my new reality. Living with Coumadin is not as scary as it was in the beginning. I go to the clinic every month and I take my INR myself at home, about 2-3 times in-between my clinic appointments. My INR is usually either within the range, or  higher. My range is only 1.5 to 2, so when it's 2.3 or 2.1, it doesn't concern me that much. 

My left arm has been numb since the surgery, and it's actually getting worse, for some reason. Only the pinkie and the 2 next fingers were numb, and now my whole hand and wrist are numb. No idea why. My breathing is shallow (see previous post for details), but I am learning to live with it. 

Believe it or not, I still have "pump head". I have days when words just don't come out of my mouth. I KNOW what I want to say, but I cannot say the words - and it looks like I am stuttering. I read that this could last for 5 years in some people. 

We are trying to make some plans for a cruise or some tropical vacation for later this winter, and I am a little nervous about flying again and going into different territory, outside the range of my doctors, but ... life is short. And I want to live it. And God has been so generous so far, that I feel encouraged to put this new lease HE has given me to good use.
I already started  shopping for Christmas, and we just remodeled a couple of rooms in our home. In other words: life is moving on, even after heart surgery. 9 months ago I could not have conceived I would be doing all these things in this much time. But life's a living surprise. And I am so amazed and in awe of it all! 

I asked one of my friends who has had his aortic valve replaced too about 6 years ago when will I just go through ONE day without thinking about what's going on in my chest. He said to give it at least 3 years. So, I'll try to be patient and still obsess over my heart, BUT ... I want to do things, too. So, I'll push through each day, one foot in front of the other. Worry or without. 

Another friend of mine asked me if I am going to yell at my surgeon when I see him next time (next month) for messing up my breathing and my arm, but IS SHE KIDDING??? The man practically killed me and brought me back to life in one piece! He gave me a functioning and better heart, and probably added years to my life. I have no words for the gratitude I owe him forever. I truly hope he lives forever and he gets to help many, many people. And I hope God is really good to him! I would not be here much longer if it were not for people like him, brave enough to fix hearts! 

I pray for all of the people who have to face heart surgery and are in some leg of this journey. I hope all of them have smooth rides, good teams and a lot of hope and faith! You all can do this. Medicine is amazing nowadays. Much health, strength and hope.

Eight Month Valversary

Tomorrow marks my 8 month aortic valversary. I have no idea where the time went!

As some of you already know, I have been back to work for about 5 months of those 8, and I have built up my hours to where I work about 9-10 hour days now, including the one hour commute I have every day. If you had told me this when I woke up in the ICU, I would have thought you were crazy talking. But, taking every day one at a time, with its very own challenges, and putting one foot in front of the other, I have somehow made it to 8 months. Only by His Grace, I tell you! We, humans, are small miracles.

Today was my 3 month appointment with my cardiologist and I had a followup echo, too. He did followups every 2 weeks after the surgery, then spaced them out to a month, then to three, so now, he'll do every 3 months for a bit, and then go to 6 months where I was before the surgery, so I guess that'll be back to normal.

My On-X mechanical aortic valve is still in mild regurgitation, but I'll take that over 'severe'. My surgeon said at some point that it will always leak, but as long as it stays mild or even moderate to not worry about it. Since it's a mechanical valve, the area of the valve (1.6 cm2) should not ever decrease. It was 0.4 cm2 when they called for surgery, so, again: I'll take this!

My cardiologist is much more cautious and he wants to see the regurgitation go away for good. But I'll take what I can get. My left inferior ventricle is hypokinetic, which means it does not squeeze as hard as it should – the left ventricle was the place of my heart attack, way back when I was still in the hospital, after surgery. So, that part of my heart has been slowly healing, but it's still “lazy”, for lack of a better word. I am convinced that NOTHING about our hearts is lazy. They are industrious little machines!! My ejection fraction (which was knocked down to 55% right after the heart attack) is now between 60-65%.

My blood pressure is still weird: he got a 140 over 60, and he said the gap between the two is still too large, and he's concerned about it, although he's not sure what makes it so, outside of the regurgitation in the valve. He, again, asked me if I am dizzy and I am not, so he will let the BP be for now. He told me to drink plenty of water and call him or go to the ER if I get dizzy when my BP is weird.

I have had some weirdness breathing lately. Not sure why, but I feel like my lungs “forget” to breathe and I need to push them to breathe for me. Has anyone experienced this before? And not right after surgery, but after 6-7 months after the surgery? He is puzzled, but he ordered an X-ray and a pulmonary function test to figure out what it is. It happens at rest, too, but it's more evident when I want to sprint walk, or run up a set of stairs, for instance. I feel like I am not getting enough air in my lungs and I have to make an extra effort to inflate them and release the air. It's nothing like the chest angina that I had before the surgery, though, so I am really happy about that.

Outside of all this, my left arm, which was left numb after surgery (probably from the nerves they damaged trying to pull an artery out of my chest to do the quadruple by-pass), has been feeling even worse. I am not sure if it's worse, or just different. Only 3 fingers and my left wrist were numb, but now, my whole palm, all 5 fingers, and the wrist are numb. Also, the “frozen” feeling from before has been replaced with a “wet hand feeling” now. I feel all the time, like I have cold water on my entire hand, when it's actually bone dry.

I have managed to walk up to 3 miles in a day, and do fine. But I have to stroll, not sprint. Sometimes, altitude (I do live in the Rockies) is a problem and makes me more tired, and more out of breath, even by just sitting there. Heat and altitude together have been a problem for me, this summer, but I heard from many other patients that that is something that happens to many.

I want to ask someone, anyone (doctors, patients) … at which point I stop thinking about this monkey … in my chest and just be. And just live. And just not worry about “oh, my God, is the stuff they rewired attached properly, or will it come apart any minute?! What would I do if that happens?” I want to know when I can feel 100% safe again to truly go off the grid for a whole weekend, or to jump on a plane to a foreign country and not worry that I might not get the right care (or any care at all) should I need it when I land there … I guess only time will tell, and it's going to be different for all of us.

As another heart patient on this support forum I follow was saying the other day, there are no guarantees, and we have to make a judgment call and just live life to the fullest – whatever that means to all of us. I tell you: even with good news from the doctor, I still worry. I still monitor myself closely. I still go through the motions of did I take my Coumadin? Did I eat too much salad today? Did my Indian food have too much turmeric in it? Did my cold meds or my allergy meds mess with my BP? And will I have another heart attack? Or did the bypasses take care of all the blocked arteries for a while? And what's that “while”? Another month? Week? Year? 10 years? It would be nice to know, but boy, so ungrateful and self important, too, to want to know.

My mom says “no one can add days to our lives. Only God.” To say the biggest understatement of the year: I am grateful beyond belief for the days He has given me so far. I will try, hard as it may be for this control freak, to leave the day count up to Him, and just worry about my next step. One foot in front of the other. 

Many GOOD days ahead, you all! Much health and hope!

Labor Day Adventures

We have not done many travels this year, given my recovery, my tiredness, my quirkiness about my sleeping arrangements and my paranoia that I have to be close to my doctors before I know for sure if this 'new heart' actually works on its own. 

But given that we both love to travel and photograph, we have gotten around close to home and either gone camping a couple of times, or visited some destination towns that are within driving distance. 

My doctors have not advised me against it, but I do not feel comfortable (or wise) to travel by plane right now. I am still adjusting in my new skin, really. 

For this past Labor Day, though, we drove to Moab, UT, which is only about a 3 hour drive away from us. Our previous extended trip was on July 4th, to Idaho, and I have to say I did much better this time in Moab than back in July! The heat was not as intense, either, which helped a lot. We rediscovered this desert town which we know fairly well, by visiting a new (to us) National Park (Canyonlands), a winery (I know, in Utah of all states!), and by eating at a couple of new eateries, one of them (Sunset Grill) with an amazing view of the valley. 

We did not hike very much, outside of getting out of the cars to capture some of the landscape in Canyonlands, and outside of walking the downtown from one end to another a couple of times, but I did spend lots of time in the car, which did not seem to bother me as much as before. 

Little by little, I am building more endurance, I think, to do things outside of my routine and to do them for  longer stretches of 'discomfort'. 

This is me, above above one of the overlooks in Canyonlands.  I felt very victorious climbing up on this high rock, with gusts of wind trying to pitch me in the abyss below. What beautiful country we have and how lucky I am to be able to be well enough to travel and take it all in!

Much health to all! 

Numbers Come Back to *Their* Normal

Well, the numbers I managed to score while being on Crestor+Praluent+Zetia did not stick around! (See this entry for a reminder of those numbers: http://livingwithfh.blogspot.com/2016/07/amazing-numbers-and-more.html). 

Although Crestor seems to work better for me, for cholesterol values, I have a lot more side effects while on it (pronounced fatigue and skin rash, mostly) and my liver values were up in July, also: the Alanine Aminotrasferase (or ALT) was 98 (normal between 7-52), and the Asparate Aminotrasferase (or AST) was 48 (normal between 13-39). 

I knew the culprit had to have been the Crestor, because it was the only thing that changed, so I asked my cardiologist to switch it to Lipitor, which I have been on for 16+ years with no liver side effects or otherwise. Now, the the Alanine Aminotrasferase (or ALT) is 39 and the Asparate Aminotrasferase (or AST) is 31. Both of them within normal ranges. 

The cholesterol numbers are up, again, though, with the exception of the HDL which is down (also bad for me to be this low):

Of course that every little bit helps, but I am seriously bummed that the numbers are not, still, under normal range, after 4 months now on Praluent (+Zetia+Statin). 

I am glad, though, that I am not hurting my liver more that it's necessary while trying to fix my numbers. I have found that the liver checks are helpful to tell about the condition of your liver, although some doctors (nowadays, most) don't recommend them as a requirement. I feel like all the drugs I take are going through the liver, and they are all very potent, so close watch is needed. As I understand it, liver damage is irreversible, so early detection of any liver problems is key.

The next step is to continue with the current regimen (as captured here: http://livingwithfh.blogspot.com/2016/07/my-current-drug-regimen-and-diet.html), and I guess just move the blood tests to every 3 months again, as before Praluent was in the picture. 

At this point, I am on all that the medicine market has to offer, short of changing out the PCSK9 drug to Repatha instead of Praluent, maybe?! But that option has not been given to me yet. 

Much health to everyone trying to stabilize their numbers, and I hope you're finding what works the best for you all, with minimum invasive side effects. 

About Camping and Life in the Past Six Months

I still remember every day the words of my surgeon, on the first day I saw him in ICU. Drugged up and all, I still remember him saying “Alina, this will be a loooooonnnggg recovery ...”, and he made this gesture with his hand, as if he were showing a long, wavy and bumpy river flowing in front of me. This is what drives me, most days, when I get impatient with myself and with being pulled behind.

This month, I have reached 6 months since surgery, a milestone that was only a dream when I came out of surgery. I’ve had undoubtedly less bumps than most people on here, but I had some, and I know today that my life before the surgery will never return. But that only means that I have to learn to live the new life, for which I am grateful and humbled! I’m not missing the old life, most days, but then what would be the point, right? Onward is the only direction I know.

I follow this site (www.heart-valve-surgery.com) where heart valve patients tell their stories. Reading about all their journeys and living my own is amazing to me - we’re lucky to have such great gifts: our lives, to begin with, and then this Heart Valve/ OHS community and leaning on and learning from each other. Such a blessing. The opportunity that I have had to meet my medical team, other patients, in rehab, and people online, in such forums, has been a true gift. The knowledge I have gathered during this time will save my life. I know this! This gift alone has made this journey worth it to me.

While living through the past 6 months, I’ve always thought that we all went in this thinking we’ll fix our hearts and we’ll be better. And I think some of us will do just that. But at the same time, for me, I’ve also learned that I’ll never be ‘OK’. I’ll never be “not” a heart patient. I’ll never be able to leave my house without my Coumadin, or my MedicAlert bracelet. I’ll always have just a little bit of an odd feeling in my chest. Different than before, but always a reminder. I’ll always check my heart rate and my BP almost daily, sometimes more than that. And these are all OK things. These are my new reality. I try to not label it, and just be aware of it: it’s not ‘good’, nor ‘bad’. It’s just there.

This journey gave me a new life, for sure. Not one without pain and worry, but one that is more grateful. More patient. Slower and more in-tune to my body and the world around it. I pick my battles very carefully nowadays, and I know, at the end of the day, what was important to me on that day, when I went in for OHS. For this life I am grateful and humbled, and I would not trade it for the world. Even if it will never be devoid of bumps.

We tried camping for the first time in the beginning of June - just for  one night, at a campground about 45 minutes from our house, and I thought, then, that I was going to die. My heart felt heavy and was beating erratically, my chest and back were killing me, and I felt extremely tired, and fainty.

A couple of weekends ago, we tried camping for one night again. This time, we camped “off the grid”, just on the side of a national forest road, by a stream, in the middle of pretty much nothing. Lately, I have felt better and I am s-l-o-w-l-y pushing boundaries, and try to venture out where there is no cell phone signal, although in close proximity to our house (this time we were only about 45 away, too).

This second time, I felt really good. I don’t sleep very much elevated anymore, so just a couple of pillows were enough for my sleeping arrangement. I actually could go to work and not feel like I was going to faint or die the next day, too. I did get some pains in my ribs and spine and lower back, but they were probably from being in the camper bed, which is not as comfy as my own, at home. The first time I went camping, I worked for a half day the following day, and then I came home and crashed! I could not even cook, or wanted to eat, or anything, I was drained and my blood pressure was odd. This second time, I worked full days, on Monday and Tuesday and then I came home, after 5 PM and worked in the yard for about an hour and a half each night, watered plants, planted some new ones, and cleaned up rose beds. Wednesday, I finally felt exhausted! I still worked a full day, but I came home after 5 PM and crashed! It was time - my body had had enough.

We went camping this last time at altitude, again (over 6000 ft; our house is at 4000 ft), but it didn’t seem to bother my chest at all. We went for two short hikes (less than a mile), before sunrise and after sunset, and one of them was uphill, but it was not hard to do for me. No out of breath feeling, or anything - which always surprises me.

All this time, while I was out there, and in the two days following the camping trip, my blood pressure inched towards being close to normal, too. Usually, at rest and with no exercise, the numbers are odd, 140 over 40 or some such thing, but after exercising (yard work, mostly), I saw the numbers getting closer to what is considered normal - like 113 over 48 or 113 over 52. So, although I am not ready (nor will I ever be) for a marathon, yet, I think my heart wants to start moving again.

I still live with constant reminders of my OHS, of course, and I am aware that I will never be fully free from thinking about it, or adjusting my days around it. My chest is still sore; I still call it “crunchy” as I think I have the distinct feeling that it’s made of multiple pieces, and is not one, solid bone. My incision is still sensitive - I still cheat on my seat belt, as it’s too heavy on my chest.  I still cannot lift much (like my computer bag and lunch box), and I still use a dolly for all my “work stuff” and I park in the handicap parking, at work.

My nerve damage in my left arm is still there and actually, I think it’s been getting worse. I have this frozen feeling in my pinky and ring finger which is constant; sometimes, my whole left arm feels frozen. My left leg is still numb, but different than my arm. It’s more like a log that I am pulling around. (they harvested an artery and a vein from my left chest and left leg, respectively, for the 4 CABG’s they did along with my aortic valve and ascending aorta replacements).

Heat still bothers me to no end. Even when I do nothing, even when I just sit there, the heat makes me short of breath and tired. This was the only thing that bothered me during our camping trip - it was supposed to be in the low 80’s but it was in the low 90’s instead. And even in the shade, and drinking water constantly, I felt lethargic and my chest felt heavy, as if my heart was working overtime.

I still obsess over my INR. Now, I measure it at home, and I panic when it’s something like 1.7 (my range is 1.5 to 2), because I know there is a margin of error of something up to 0.3 points. But so far, knock on wood, no bleeding nor clotting events, than Goodness! I have my cell phone alarm set permanently for 7 PM at night, to make sure I take my Coumadin the same time every day and not miss it. This will be set forever, I am sure.

I am still nervous about flying, and I think I’ll wait for up to a year before I venture out on a plane. This is just my own decision, I have not run this by any doctor. I just want to make sure I can rely fully on the new equipment I have in there. But every day, I gain a little more trust in it. I used to be nervous to be alone in the bathroom, taking  a shower, with my husband just downstairs. But now, he goes to work before me, and I am alone in the house, as I get ready for work. I drive 30 minutes to my office and I am in one piece, thank Heavens, every day. I had to get used to feeling OK about being independent again in these past months, but it’s happening.

For those of you just starting these heart journeys, all the doubt, and the questions and the fear are very normal. There is no such thing as a dumb question, so ask here, ask your medical teams and probe them till they make you feel at ease. This is about your life, and they owe you all the answers you need to know.  Learn as much as you can to set your minds at ease.

I found, for me, that knowledge has been power, and that helps me through the days when my body feels sorta shaky. Because I know some things, and because my doctors schooled me, I can trace why my body is feeling shaky some days - work, heat, non-sleep, eating or drinking the wrong things, stress all affect the way my heart feels. And as one of my PA’s said “you gotta respect the heart, man!”, so the way my heart feels is the way my whole body will feel. This journey teaches me that with every step.

Much health, confidence and strength to all of you. Smooth roads, and heart hugs to everyone. 

 

At the campsite, in the dusk, awaiting dinner. The leaves are changing already, in The Rockies. I feel like the whole year is behind us already ...  

The Specialty Pharmacy: the Long Road of Becoming a Praluent Patient

Today, I wanted to outline the process I went through before I could actually buy and benefit from a prescription of Praluent, the new PCSK9 drug approved by the FDA last year, for FH patients only.

My cardiologist prescribed Praluent (in addition to Lipitor and Zetia) since April of this year (about four months ago). There is a long and convoluted process to be approved to be on Praluent, before the insurance would pay for it. And even after that, there is another long process to actually get it delivered. But let's not jump ahead.

My cardiologist is also the head of the research center in my state for these kinds of drugs, as he is a lipidologist, as well. So, he and his staff know all the procedures they have to follow to get this approved for the patient. They have to fill out forms that ask many questions about my medical history and what other drugs have they tried and which failed and which worked by how much, and so forth.

According to their office, they filed all the right paperwork as far back as April for my insurance to approve it. My insurance called me around June saying they approved it and they would like to schedule the delivery of Praluent. However, they had approved it for the wrong strength. Between April when the doctor originally contacted them and June, he had doubled my dose, as the 75 mg/ 2 weeks did not make a huge difference in my numbers. When the insurance called me with the approval and they found out that now I need 150 mg/ 2 weeks, they said they would need to call the doctor to have them re-issue the prescription.

Fast forward to August, and through several repeated faxes from my nurse to the insurance company, asking for the approval of the right dose, I still had not heard anything from the insurance about the new dose. I had to call myself last week and get an update from them. This is something you'll need to get used to doing – staying on top of the insurance companies, as their main goal is to gather premiums and not pay. Or at least is how it feels most of the time.

Anywhoo, I called them. They did not call me. When I called, after about half an hour of waiting on hold, I got transferred to a first rep, who confirmed that my prescription was approved. I asked if they can just send it to my pharmacy, so I can pick it up (silly me!), and they literally laughed. They said, “Oh, no, ma'am, these are specialty drugs, so you will be able to only get them from our Specialty Pharmacy and you are locked into the mail delivery, every month”. After making sure they had everything they needed for the approval to be in order, they transferred me to a second rep. He was very patient and thorough and explained to me how everything works.

He will mail me (second day delivery through UPS) a dose for one month (two shots). Every month, I would have to call them, to ask for a refill. They will not automatically refill it. Because this is a “specialty drug” and still, I guess, considered experimental at this point, they don't know whether the doctor would keep me on it or not. The approval of the drug only lasts for 6 months, after which I will have to again call the doctor, who will need to fax them “my case” again, to make a point for me keeping to take this drug beyond the 6 months. Then, they'll approve it (maybe?!) for another 6 months. So, I am not only locked into mail ordering it, but also into calling them and calling my doctor and asking for the drug a lot.

The drug, he said, will come in a Styrofoam box, with ice packs in the box (Praluent needs to be stored in the fridge). They will send me an empty container for “sharps” and I will need to dispose of the injection pens in that container, and then take it, when it's full, to a specialized center. I am thinking that my doctor's office might know what to do with it. There will be an indicator, in the box, he said, that would show whether the temperature in the box dropped too much and the drugs are not good anymore (this did not happen, by the way – there was no indicator in the box).

Because I have had so many medical expenses this year, I have met my deductible and my drugs are free for the rest of the year. So, from now till the end of the year, Praluent will be free, the insurance will pay the whole amount. If it had not been for this, the shelf price, with no insurance, is $1400/ month. As you can imagine, quite high.

After I was done talking with the second rep, at the “Specialty Pharmacy”, he forwarded me (after another 15 minutes of waiting) to a Pharmacist. He went over several things with me, although I had told him I had no questions, as I have been taking samples from my cardiologist for a couple of months. He was very thorough, too. He gave me tips on how to make the injection hurt less (numbing the spot of the injection with ice cubes - which didn't work, by the way, and it made the serum build up in the “frozen” spot which gave me a huge bump on my leg). He also went over several side effects. Despite what the cardiologist had told me, he said there is a potential that Praluent could affect the liver, and that I should have to have my liver enzymes checked periodically, to ensure this does not happen. He also told me that Praluent has the tendency to make you very dehydrated. This was interesting to hear, because a month or so ago I ended up in the ER because I was dehydrated, which was unusual. I drink lots of water during the day, and even at night, but somehow, I need more water than normal, lately. I chalked it up to being a “summer thing”, but I guess Praluent can have something to do with this, too.

When I got the drugs delivered to my house, they were, as the second rep said, very safely packed in a huge Styrofoam box, with ice packs inside. There was one box that contains two pens of Praluent. There was no indicator in the box that the temperature might not have been appropriate, but the box felt very cold, so I promptly placed it in the fridge and we'll call it “good”.

After four months of forms and many-a-faxes between doctor's office and insurance, and calls between insurance and me and the other way around, I am finally, officially, a Praluent patient.

I just wanted to take some time to outline this journey, just in case you're getting ready to start yours with the “Specialty Pharmacy”. Hopefully, this will give you an idea of what to expect. If your insurance is not paying for the drugs, I am not sure how that would work and who would provide the drugs for you. I doubt that the doctor can just order them at the brick and mortar Pharmacy you use, but they might. 

 

The paraphernalia arrived: opening the enormous box from the "Specialty Pharmacy", with all the accoutrements, along with the small box of Praluent (last shot).

 

100+ Things I Wish Someone Had Told Me before I Had OHS

Just to recap, here’s what they did to me: they wheeled me into an operating room around 7 AM on a cold February day. The surgeon was in the room around 8 AM. I have the full report of my surgery, but to summarize: they broke my sternum, and opened my chest up and they realized they had to replace part of my aorta. For this, they did a circulatory arrest procedure that involves dunking me in ice till my body cooled way down (below 68F). Once they did that (while hooked up to the bypass machine, at the same time), they stopped my heart and cut into it. They replaced my ascending aorta with a Dacron graft, along with my aortic valve and my aortic root.

They warmed me back up, and they started the reconstruction of my other coronary arteries: they harvested a vein from my left leg and a piece of my mammary artery to do 4 bypasses in my heart (that’s 8 blood vessels that had to be stitched onto my heart).

Everything was said and done, with my heart restarted and me heavily sedated heading to ICU after more than 12 hours.

I survived all that, and as far as I can tell, no major damage has been done to my brain, although the circ arrest alone can render you a vegetable for the rest of your life.

About 7 days after the surgery, I had a heart attack in the left ventricle of my heart. I survived that, too.

I have been lucky. So far.

Here are some things that no one has told me before I went in. Some things you only find on your own. This is my new normal. My new life:

1. (Before the surgery): I wish they had told me to try to tell myself these things before I went in: hospital staff are people, too. They may forget, make mistakes, drop things, be rude or impatient. They also may be caring, attentive, professional, quick and fun. I was not their only patient and my current need may have been minor compared with what they’re dealing with a few rooms away. I wish I was reminded to be courteous, understanding and reasonable. I understand medical staff better now and have more respect for them than ever before, especially hospital and ICU staff. They are amazing people.
2. Before the surgery, I tried really hard to remember the staff’s names and call them by them. It made the admission process much more pleasant and even the ride to the anesthesia room.
3. When they wheel you into the surgery, surprises might appear - like a urinary tract infection with no symptoms that will have to be treated through an IV while you’re being operated on. That felt like insult added to injury - as if there was not plenty to keep me worried already!
4. I wish someone told me that, before surgery, they would shave areas of my body that I never knew needed to be shaved - like the back of my hands and my arms.
5. That I would live to see the day when I am not a control freak. Before surgery, I was like a loose raft at sea - just letting myself be carried away by fate, hope and God’s will. This kind of letting go was the only thing that kept my mind intact and not made me lose it.
6. That I would become a walking encyclopaedia of heart disease and heart surgery terms: that I would learn everything there is to know about CABG (had not heard about it before my surgery) and how blood vessels get harvested for it, and I would know the difference (finally) about systolic and diastolic pressure, and what makes them rise and fall; that I would not only know what circ arrest is, but actually would live through one with relatively minor side effects.
7. I never knew I was going to utter these words, but: I am glad I only weigh around 100 lbs, because it took a shorter time (and safer for the brain) to cool me off and warm me up during circ arrest. To this day, I am freaked out by what my body went through, especially during that procedure!
8. (After the surgery - during hospital stay): I thankfully don’t remember anything from the time the anesthesiologist was done putting the two IVs in my arms and giving me the “relaxing” drugs all the way to waking up in the ICU after all was said and done. I have visions of me in a big, dark room, with lights shining on me, and people cutting me open. I doubt these are real memories, but who knows?! There is this secret portion of my brain that does not remember that surgery day. It was probably the shortest day for me, the longest for my family.
9. When I woke up, there were tubes sticking out of me everywhere, my stomach, my neck, a urinary catheter. But surprisingly, they did not all hurt. Some of them, I could hardly feel (in my neck).
10. That my voice is reduced to a wimpy whisper when I am in deep pain. Kinda knocks the wind outta me.
11. My skin felt like I got dropped in an ice bucket for a month or so after the surgery - extremely sensitive to touch and almost like it was burned.
12. After surgery, I could not wear ribbed shirts while laying on my back, because my skin was ever so touchy.
13. I do not remember the names of my OR nurse, any of my pre-op people and they were important in my journey. I do remember my anesthesiologist's name, the three PAs and the other two surgeons in the room, but I blank out on the rest.
14. Everything I knew about moving my body changed right after surgery. My motion was limited not only by the machines I was hooked up to, but also by sheer pain. Twisting, pulling myself up in bed, sitting up on my own were impossible for the first couple of days and I was lucky; it could take much longer). You’ll learn pretty fast not to take your normal mobility for granted.
15. That I cannot yawn with a drainage tube in between my ribs. I looked and felt like a cat who’s trying to get something out of their throat that is no longer there. And it hurt.
16. I could not wipe myself after using the bathroom, as my body could not twist that way.
17. It was close to impossible not to question my care. I constantly worried that they’re giving me the wrong drugs and are going to kill me, with every pill they gave me. I had to remind them to always give me my nausea pills. I could not breathe without pain, I definitely did not want to throw up.
18. I was insanely hot when I came to in the ICU. I had never felt that hot in my entire life. I had 4 2lbs or so bags filled with ice laying on my bare skin, to cool me off the first night I was in ICU and for the next 2-3 days.
19. I have not been scared of needles in my adult life, but while in the hospital, I became immune to them. They’re part of your routine, like going to the bathroom. I never ever, however, got used or will ever ‘enjoy’ shots in my stomach. Thank goodness they only have me one Lovenox shot and not several. That is just some cruel stuff!
20. I have never been able to crush ice in my teeth, but for the first two days in the ICU the ice chips were a God sent! I ate them like they were the most precious food.
21. I was going to be seen by A LOT of people in the hospital: nurses, orderlies, doctors, PA’s, breathing therapists, walking therapists, home care people, lab technicians, radiology experts, just to name a few. They asked me the same questions often  and gave me their respective expertise. All this while I was numb with pain, lack of sleep and barely able to breathe. It is a very stressful time and I needed to grind my teeth and stay civil.
22. I hated walking in the hospital. I was so scared I would die, that my heart would collapse in my chest, that my tubes would pull my chest wall off my ribs, or whatever else catastrophic was about to happen to me! As important as everyone told me walking was, I never grew to agree.
23. I had to have a blood transfusion during the surgery. This scares me to no end to this day. I have no idea what kind of muck I got with the other blood, and we all hear stories ...
24. I wish someone would have told me how incredibly grateful I would be for not throwing up right after surgery. I cannot imagine being in so much chest pain (especially from my tubes) and mustering the strength to regurgitate. I think that would have killed me! But like I said - I had to remind them of my nausea pills.
25. Lots of pains, aches, and lots of just “discomfort” - you will need to know the difference and qualify it for the medical staff: they want to know exactly what hurts vs what is just tight, or just “in the way”, and give them a number for the pain - you will get to know your body very intimately this way.
26. That my left arm and leg will be frozen for months, if not forever, after the surgery.
27. If you’re draining from your lung, try to stay active: walk, use your spirometer, sit up, eat sitting up, as the draining moves faster when your body is active. You will get rid of the tube faster if you move.
28. No matter how I looked at it, I never liked the spirometer. It simply hurt and made me feel like a failure. It was not till about a month into the journey that I finally got the bubble to go up enough where I didn’t have to use it anymore. Visiting with my breathing coach was my least favorite part of the day, although he was maybe the nicest person who took care of me.
29. I wanted to nap in between the medical visits. I was exhausted the entire time in the hospital, and I looked for any excuse to not walk or practice my breathing. Napping seemed safe - they would not wake me up to make me do work, so it was a coping mechanism, too.
30. The hospital has everything: beyond ice and water and meals, they have chapstick, lotion, even feminine pads, even underwear. 
31. Although I was hooked up to machines and massage booties and I could not go anywhere, I was mortified to use my call button, every time. I felt so guilty for calling in the nurses to get me more water or to give me more pills, or to disconnect me from something, so I can use the bathroom.
32. I brought all these with me, to the hospital, thinking I would be bored: book, magazines, iPad, phone, my journal. I am not sure why but my eyes did not work while in there - everything on any of these was fuzzy and I could not focus my eyes to read anything. I used the phone the most, but for very short stints of time.
33. Despite what they show in movies, my butt didn’t show while I walked the hallways. I could wear underwear and even pj bottoms.
34. My sneezes changed after surgery. I had to be ready for them fast: they come on quickly and are short and powerful.
35. That suddenly, I’d become allergic to the glue on the back of everything - IV band aides, EKG sensors, warm patches, etc.
36. That I would have a heart attack after the surgery, while in the hospital, just lying in bed. My ejection fraction was 70% before the surgery. After the heart attack, it dropped to 52%. And I would learn a new blood test to follow: troponin - this should be around 0.1 or 0.01, or some such thing, and it measures the damage done to your heart during a heart attack. Mine was 6. 
37. After the surgery - home and rehab: all I wanted to do when I got home was sleep all day. But I had to just steal some catnaps, because it was more beneficial for me to sleep at night. However, for the first three months or so, I woke up at least 5 times a night. So, I pretty much got used to sleeping poorly for a while.
38. Right after surgery, lifting my arms at shoulder height, or a little higher was painful if not impossible, at times. After a finished strength training at rehab (3  months from surgery), it got marginally better, and it’s been improving daily, ever since.  
39. I loved, loved, loved (still do, in fact, on the ‘bad’ days) my heart pillow which they gave me to stabilize my chest. I hugged it at all times the first month - even just sitting in bed, it made my ribs and back hurt less. I used it only when coughing and laying down after that. After five months, it’s still easier on my chest to hug it while I sit up in bed.
40. That I will have so many bruises and scars on me, after surgery, that I would forget the count of. I could not believe how beaten up my whole body was, not just my chest - my feet, my knees, my upper stomach, my neck.I came home like this and sported them for at least a month.
41. After I left the hospital and once I started taking Coumadin, I was freezing all the time. For the first month after surgery, I was under many blankets and shaking all the time, working out in rehab in a couple of wool sweaters.
42. That I would need help cutting my nails, for months, because my left arm doesn’t work properly.
43. I needed a medical chair in the shower for about a month after surgery. First, it was to sit down; after a week or so, it was easier to rest my leg there, while shaving. I felt old.
44. That I was going to leave the hospital with a tube attached to me, stuck in between my ribs and still draining a pink fluid at the rate of more than 150 ml (sometimes 200 ml) a day. I thought my entire blood and plasma supply will leave my body after a while.
45. As much as I hated that tube, I was so incredibly grateful to my PA for talking me into keeping it inside for two more weeks, after the hospital!  I was dumping more than the normal daily amount, so I would have had to go back and get it reinserted after fluid would have built into my lungs - a painful trip I managed to avoid by listening to him!
46. I wish they would have told me that my husband was going to give me the first shower, when I came home. And that I was not going to object, but be incredibly grateful for it.
47. How fast you learn that showers are REAL workouts! They take every drop of energy out of you. Although, normally I am a morning shower person, I personally found that a shower in the morning after OHS killed my day - I had no energy left for anything. A shower at night made me sleep better, which is also the opposite of how life was before OHS - a shower used to energize me at night and make me not sleep.
48. I hated washing my hair for at least 2-3 weeks after the surgery. It was the most strenuous workout, second only to climbing up stairs. I was out of breath every time I did this.
49. Harder than showers are climbing stairs. When I came from the hospital and climbed to my bedroom, one step at a time, both feet on the same step before moving on, supported by my husband, I was done for the day at the end of it. I was completely breathless at the top and had to lay down for an hour. Done, I tell you! It did get better with time, and I felt like finishing climbing the Everest with every day when I could climb a little more without being breathless.
50. My relationship with food changed right after surgery, for a month or more - mostly, for the worst. Some things that happened for me: my throat was scratchy right after surgery, when the tube came out; then, my appetite was gone, right after that. Then, the food tasted like metal, possibly because of the Coumadin. I forced myself to eat, but I felt full after 2-3 bites. I had to eat slow (a feat for me) and often to get nutrients in.
51. That I had to take iron for 3 months after surgery, as I lost blood and I was very anemic.
52. That I would lose 10% of my body weight during recovery. Everyone demanded that I would gain weight, but I was not able to eat much. I was caught in this vicious catch 22 (need to eat to gain strength but not able to) for the better part of the first two months. The appetite returned after that, but even with eating, I could not gain weight. Took me a week to lose 10 lbs. Took me 5 months to gain 5 back.
53. Once I did get my appetite back, I got full quite quickly, so my meals were half the portions of what I ate before. The reason I was getting full faster was because the minute my stomach increased a little bit, it pushed onto my diaphragm, which had been injured during surgery and it was more sensitive to the message “I hurt”, or “I am full”.
54. No matter what I did, how I sat, how I moved, either my ribs or my arms or both were going to need motion. Both hinge off of the sternum. It all hurt. Period. No way around it. They hurt for a while (months, sometimes more). I needed to consciously learn the very delicate balance between my arms and the rest of my upper body quite well and fast - something we almost never think about.
55. I normally dread the idea of a gym. No one told me that I would go to the gym four times a week for six week straight and love it. When I went the first time, I could not walk for 8 minutes, slowly. When I left, I was lifting weights and walking fast for 45 minutes straight. The smallest improvements from day to day kept me going and coming back for more. It felt so good to let my body ‘bloom’ again.
56. That my bowels would go through a roller coaster - between the funky appetite, skipped meals, food I didn’t normally eat and the constipation or the diarrhea some of the new medicines I was taking caused, my stomach had been guessing and I felt it. I had days of 20 watery stools in a row and dry spells of 4-5 days of nothing but heavy stomach cramps.
57. Bending over, when I came home, was a challenge. I needed all the help I could handle in the first 2-5 weeks after surgery, for things like putting on my socks and tying up my shoes.
58. I had to do lots of drug balancing - I needed to write everything down: every drug (especially the pain killer and Coumadin) had strict schedules. When in the hospital, they will tell you what they are, but high on percocet I could not remember when I was supposed to take them, so I wrote them down.
59. I had journals for lots of things: medicine times, blood pressure measurement, how many servings of greens I eat a day, the value of my INR and all the doctor’s appointments, labs, INR checks, echos, or other tests.
60. I would spend days, maybe whole weeks researching my new diet, my new drugs, the effects of everything on my day to day life. That I would lose many nights of sleep worrying about Coumadin and my INR range. Constantly worrying.
61. Also,that I would need to read in detail and ask about interactions between the new drugs and what I took before. It’s important to know how each one affects me, because I have been going through so many ‘unusual’ symptoms: no idea what’s a side effect of surgery and what is a side effect of the drugs, sometimes.
62. That I would go to every doctor’s appointment after surgery with a 3-4 page list of questions about new things my body’s going through and ask them to decode them for me. I am bewildered that I have not been evicted from my cardiologist’s and surgeon’s offices yet.
63. That I would make a whole batch of new penpal friends who share my experience and know what I am going through every day. Knowing these people has been the best outcome from this crazy, wild and painful journey.
64. About my ‘favorite’ subject: painkillers! I am usually steering away from them. I work through migraine, muscle cramps, whatever, just because I hate taking them. With OHS, I am even telling you: don’t be a hero! You ARE, regardless, but don’t suffer pain just because you hate the drugs. Especially in the first weeks, things will hurt. One of my nurses said “Your body has been assaulted, and when it’s waking up and realizing that, it will be angry and you will hurt. This is normal”. Amazingly enough, the pain from the incision does not hurt, but the ribs and back will hurt you to the point of paroxysm! Especially the chest tubes will hurt. Nurses and doctors will want you to BREATHE deeply and get your lungs going again - you won’t be able to do that without painkillers.
65. I went home with a chest tube woven between my ribs, I could not breathe or speak when the spasms started about every hour. I was taking percocet but that was not enough. I asked them for more, and they added valium which relaxed my muscles. I was SO not happy to be on valium. I wanted less narcotics, not more. But trust me: I needed to keep on top of my pain, just to be able to be during the day, not to mention to be able to go to rehab and see progress. It took about 6 weeks to be completely narcotics free, and about two months to be completely painkiller (tylenol) free. But, boy, how I needed those drugs.
66. That there will be lots of sleep weirdness and trying to find out the “new comfy sleep position” that will get me some rest. The first night I was home, I tried several pieces of furniture, several pillows, duvets, quilts, blankets, bolsters, wedges before I found a good position for rest -  it was my recliner and it was far from perfect. I put up with it for about 4 nights and then, pain and drainage tube and all went to my bedroom and I forced myself to sleep in bed, bolstered up on a folded duvet and two pillows behind me. I slept like this for 5 full months before being able to sleep almost flat on my back, with just two pillows under my head.
67. That it would take more than 6 months to find my lifelong sleeping position again (on my side, hugging a pillow). I’d have to sleep only on my back for months now, and at 6 months, I still feel like my chest will come undone if I twist to lie on one side. Sigh.
68. That I would become a bonafide germaphobe. Even after 6 months now, I wash my hands after touching anything  and I never wear the same clothes twice. I did not leave the house, outside my appointments, for the first month and I covered my face in most doctor’s offices when I did leave. I did not go out to eat for 6 weeks after surgery, and then, I picked my restaurant carefully - not a fast food place, or a food truck, just something more established and clean. I tried to keep friends away, from visiting me, especially during flu season.
69. I wore a scarf or a medical mask around my mouth and nose for about two months after surgery. I wore them up to three months in stores with lots of crowds, cleanliness issues and especially children. My surgery was in February, which is in the middle of flu season, so I was nervous.
70. Nerves will take a while to wake up. Mine started to wake up after 3 weeks to a month from surgery, and I was noticing it more when I was in rehab, because I was using more of my body, gradually. When nerves wake up it feels like no other sensation you have felt before: it’s like your chest (neck, arms, legs, wherever the “waking up” happens) are electrocuted with sharp shocks. The last thing you’ll want to do is touch or massage the spot. This comes and goes, it’s not a constant “pain”.
71. My blood pressure would be incredibly low for months - especially the diastolic. They can’t figure out why, still, but it’s gotten higher with time, they think because my heart has been healing. I thought they’d freak out when they would see a diastolic of  30, but they don’t. Unless you’re dizzy or fainting, they don’t seem to care about the numbers of your blood pressure.
72. That ‘weird’ stuff will happen, almost surely: I have had hallucinations and double visions, along with lightheadedness, seeing stars, or black patches in front of me, losing my peripheral vision, too. Some of these were new to me. They used to scare the wits outta me, but I got told times and a again that these are all normal.
73. That I will be more depressed than I have ever been in my life. Some days I was at the bottom of a mosh-pit of self-pity, asking “why me?”. Some days, especially at rehab, I cringed and kept walking telling myself I would never live to be 70-80-90 like most other rehab patients, since I am going through this in my 40’s. But I needed to always remind myself that I  survived a very big operation and that I am on the right side of the dirt, and that, for now, this has to be good and positive enough. Someone, somewhere gave me another chance and I reminded myself that I have to push through and find out what to do with it.
74. I have learned not to judge my feelings and my body aches. I just notice them, know that they are there and make adjustments around them. I keep telling myself that there is no validity or reality in saying “it’s been five months, I need to be here (fill in the blank) by now”, because there is no way to measure that. The reality of recovery speed is personal to all of us. I just observe, without judging.
75. That I would learn patience - the big “P” word that I could not even spell before surgery. I could not rush my body into doing anything - it took its time to achieve every milestone, and it’s still a work in progress. And that’s OK.
76. That I had to have up to 4 appointments every week, before my medical leave would be over. Between cardiologist and surgeon appointments, INR checks, echos and other tests they recommend, I kept a pretty busy schedule for a while. I never really felt like I was resting during my 3 months of leave. I was in constant motion towards the next ‘healing seminar’, somewhere.  
77. That I would rely 100% on my support group. For those who know me and always tell me that I am strong, shut the hell up, people! I am mush! If it were not for the online support groups of patients, for my husband, for my closest friends and family who emailed me and sent me stuff to encourage me, I would be dead of despair right now! I did not even know that I didn’t want to face this alone. I am grateful to all the people who stood by me, any way they could.   
78. In some shape, I have said this before, but it needs repeating and its own bullet point: my mind was in a fog for several weeks after surgery. I did not expect to have a ‘pump brain’ for months after it. Six months into it, I still forget sometimes common words, and I stutter to pronounce them, even when they do come to me.
79. My breath has been shallow every since the surgery. I am not often short of breath, anymore, but I feel like my lungs are not filling up with all the air they really need, most times. I feel like I could breathe deeper, but something, internally, won’t allow my diaphragm to expand all the way.
80. I have never thought possible that my back (always strong and pain free before) would hurt so bad, for so long after this surgery! Many months away, and I am still all in kinks and cannot move free of back pain yet. Losing 10% of my weight forced me to sleep on my spine and tailbone, since there is little to no cushion, which are constantly bruised and sore.
81. I take better care of my teeth now and take antibiotics before any dentist’s appointment - there is A LOT of bacteria in our mouths and if they go in the blood stream, again, they can damage the valve which might need reoperation. I started using an antiseptic mouthwash after surgery, for extra insurance of cleanliness.
82. My voice remained changed after surgery - it’s up and down, deep and high pitched, like a teenage boy’s voice, looking for the right pitch.
83. I would probably never be able to wear low cut t-shirts anymore. I have to include a “coverup” piece for the many low cut t-shirts I have, and I have restocked my wardrobe with lots of turtlenecks and higher cut shirts.
84. You will obsess over your condition, your recovery, as it’s all new and no matter how much you read, nothing can prepare you for the ‘real’ thing. Be ready for your family and friends to get tired of you talking about your heart condition and your recovery.
85. I wish they had told me that I would stop eating sushi for a while and will stop eating raw sushi for good.
86. That I would change the way I chop veggies. After a bad cut where I could not stop the blood, and a visit to the urgent care, I now rely more on the chopper and do less manual chopping.
87. That my valve will still be leaking, even after all this. With a mechanical valve, I was expecting it to be close shut and secure for life. Not the case. I am told that the leakage is normal and as long as there is no murmur, it’s not dangerous.
88. That although I have not had angina routinely, like before, and I see a lot of improvements from the way my heart functioned before, I am not quite ready for the marathon training quite yet. Even after 6 months, I still have to take it slow, and walk, not run, carefully walk up the stairs, not hop. If I do anything too fast, my body responds by making me dizzy and being short of breath.
89. That I would have no idea what my new normal is: when I’ll be able to do X,Y or Z like I used to do before surgery?! There is no timeline for it, and I’d just wake up one day amazed that my abilities came back. For some thing, it’s happened. For others, I am still holding out hope that I’ll be myself again.  
90. That although everyone tells me to not compare my recovery to others’, I’d read online journals about patients like me, and I’d compare myself to every patient, and my recovery to theirs. This is the biggest waste of time and I know it, but I can’t stop it, sometimes.
91. That the beta blocker I have been on for 20 years, before surgery, would cause my blood pressure to tank, and that it would have to be cut in more than half of what it was before. My heart has a new anatomy now, so it requires a new baseline.
92. I’d be at risk for infections for the first three months after surgery, and for some infections, for the rest of my life. Any tooth, urinary tract, stomach infection must be taken very seriously before it could damage my valve and require re-operation.
93. That I would have to premed with antibiotics for all dentists’ appointments and any procedure that involves a biopsy for the rest of your life.
94. My medical world has always been complicated and complex, because of my FH. But now, because of the artificial valve and because of Coumadin, it’s triply complex. My acid reflux is a huge liability now, because of the potential for bleeding. All the doctors I will ever see from here out will need an update on all this.
95. I am not able to wear my seat belt tight around my chest. I ‘cheat” even after 6 months, and I make a knot in it, so that it’ll be loose. Sshh! Don’t tell the police!
96. I wore button down shirts, lined with an undershirt for almost three months after surgery. I hated wearing a bra, so I skipped them for many months.
97. Because I am small chested, my incision is straighter, they told me. Women with bigger breasts have the incision pulling to one side of the sternum.
98. I am not able to wear any heavy necklaces on my chest , even at 6 months out.
99. That I will get a handicap sticker for my car, and I will actually use it. It’s easier to bring my dolly in at work, with my computer and lunch bag on it, as I am not able to carry them yet (6 months). It also helps parking closer when it’s hot out. Heat bothers me tremendously, as they warned me that it would.
100. For people taking Coumadin: I have kept a food journal in excel for months, to figure out what I eat for every meal, and to see what my INR is doing according to that. I put the sheet on google drive, so this way, it would be traveling with me, wherever. I found a site where I check what foods contain most Vitamin K. Despite all this diligence, I feel like my body does what it wants - during the first three months, my INR was too low (when it should have been high); after the three months, it’s been too high (the range for the rest of my life is 1.5 to 2.0). I have learned that it’s a shot in the dark with Coumadin and it’s like walking on a tightrope. One bad meal, one glass of wine (for me) and I am off balance.  

They also did tell me these things, which were all true: that ... 

• I will retain lots of water while in the hospital, so make sure you bring on slip-on shoes and loose pants. I was grateful I did. It made coming back home that much more comfortable.
• You are not going to die.
• You will be a little worse for wear, but with time, you’ll bounce back. I remember almost everyone had this expression “you’ll bounce back” and I just wanted to bounce an elastic band off of their faces instead and make them stop saying that. It’s not squishing a stress ball that will “bounce back”, it’s cutting you open and stopping and cutting into your heart. But they were right. I did bounce back, maybe not all the way, yet, but functionally ‘back’.
• From the mouth of my echo tech: “It is a scary operation, but you gotta wrap your head a little bit around it and it’ll be alright”. She was also right. I “wrapped my head around it” by letting go. Completely.
• From the mouth of my surgeon: “This is a looooonggg recovery process”. Even if you are not a patient person (like me), you will learn patience. I did. I am still waiting for the process to end. In some ways, I don’t think it ever will. We’ll just need to learn how to live with the new hearts. There is no rear-view mirror onto our old hearts, nor a way to turn around.