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.

Amazing Numbers and More ...

If you remember a short while back (http://livingwithfh.blogspot.com/2016/06/update-on-all-things-cholesterol-heart.html), my cardiologist was really bummed that after 4 shots of Praluent, and after doubling the dose, my numbers were still not in the normal range. He made the decision, then,  to switch my statin from Lipitor to Crestor, saying that the latter is "just a better drug" and he hoped to see the numbers drop even more with a mix of Praluent+Crestor+Zetia. And, boy, he was not wrong.

Although my HDL is still too low, my total cholesterol and my LDL are the lowest I have ever seen in me, without a doubt. They are also  the lowest in my entire family (for years, they have been always the highest), and for the first time in my life, they are normal. The total is 155 and the LDL is 104 mg/dl. Whaaa??? I was floored when I saw this.

For a full picture of my numbers, please visit this page: http://livingwithfh.blogspot.com/2016/07/my-current-cholesterol-numbers.html.

For someone who was diagnosed at 8 with 790 total cholesterol, this is no small feat, for sure. Growing up with this disease, you hear all the time, that it will kill you before they figure out a treatment/ cure for it, and by that they mean before you will ever see numbers in a normal range. Well, that too is a thing of the past for me, as these numbers are pretty amazing.

And because any medical treatment is like a double edged sword, you knew there was going to be a "but". The Crestor usually gives me side effects. I am very tired on it, my whole body feels achy, like I have the flu, and my skin is extremely itchy and it peels off in patches, sometimes, mostly around my face and neck. I knew about these side effects from taking it before, but I gave it another shot, thinking that maybe they have improved the drug and maybe my reaction won't be so bad. It was. And that was not the only problem: two of my liver results went skyward. The Alanine Aminotrasferase (or ALT) and the Asparate Aminotrasferase (or AST) went up. ALT is 98, and the highest normal is 52 - so, mine is almost twice what's recommended. The AST is 48, and it's normal up to 39.

Lately, some doctors have told me that it's no longer necessary to do liver tests while on a statin, but I personally don't feel safe taking them without seeing how they impact the liver. My cardiologist doesn't recommend them, but will run them if I ask for them specifically. And this is the reason why. For many years, statins have been known to cause liver problems. I don't believe that overnight, those problems have gone away. I would definitely encourage you to ask for both a liver and a lipid panel when it's time to test again. Better safe than sorry, right?

As a result to my bad liver tests and because it's challenging to manage my side effects from Crestor, I have asked to be switched to Lipitor, and the doctor agreed. I hope that being on Praluent for a while longer will finally be enough to keep these numbers as low as they are. I will report back after one more month of Praluent + Lipitor + Zetia to see where we will be then. 

                                                                         ***

Now an update on my OHS recovery.

Some of you remember my previous update, where I went to the ER, being close to fainting. My BP was low, my QTc's were high, according to the machine they hooked me up to, but everything else checked out normal and other than one liter of fluid through an IV, they didn't do anything else, nor were they able to tell me what caused the episode. I followed up with my cardiologist this week and he, too, was puzzled by the whole thing. He read the EKG they did then, and he said the QTc's were in the "upper range", but not high, and either way, they don't cause a fainting feeling, as they would point to arrhythmia, which would be more like palpitations, not fainting. He did say that the blood pressure that low does cause dizziness and fainting, but he's not sure why it was so low, other than maybe I was indeed dehydrated. Once they gave me fluids, I stopped being dizzy, so maybe that was it. It has been incredibly hot here lately, and despite the fact that I am a good drinker, I might not keep up with as hot as it's been. So, anyway, that episode will go to remain undiagnosed and in the past, and we're moving forward. 

Since then, I had to go out of town for 4 days, at a work conference last week. The event was at a resort about 45 minutes from my house, so I felt comfortable being somewhat close to where I live, just in case I had to go to the ER again, or in case I needed help, with all my co-workers there and my husband just 45 minutes away.

The days of this conference were l-o-n-g and boring - just meetings, non stop, for 10 hours, and then, after an hour break, a dinner event for another 2-3 hours. All in all, I had four days of 12-15 hours each. My BP and pulse were fine in the morning, but they both went up in the afternoon. My stamina has much, much improved in the past 2 months, due, too, to building it up while trying to work full time, but my heart is still struggling to keep up, I think. My BP was around 160/55 (diastolic still low) and the pulse around 90 (mine is usually in the 60's and 70's), at rest, once I settled down for the day, as an average. Normally, my BP runs around 130/60 at rest.

One day, we had to have a team activity which involved being outside for about 5 hours, in 100F heat. Although I didn't run, or anything, I walked around most of those hours and I climbed this 55 ft hill (a thermal crater) which was on the resort property. That day, my blood pressure was the highest, and my heart felt the heaviest - I heard it the whole time in my ears and it felt like it was going to pop out of my chest. That night, a blood vessel popped in my left eye, too. That was the most struggle I experienced that week. Other than that, most of the time I was fine, just very tired, but I could push myself to go through the day, and all the meetings and all that. Everyone around me who was perfectly healthy was exhausted after this week, so I thought I did pretty good, considering.

This past weekend, following the conference, I just took the weekend off - didn't do much, except read a lot, cooked a little bit on Sunday and ran a couple of errands that day, too (light shopping). On Monday, I felt like I was a little bit better, but not fully 100% energetic, again.

I am almost six months out from surgery, and I'll have to say: I do most of the things (about 90%) that I used to do before surgery. I do some of them slower than before, but I do carry them to completion. I still can't lift much and I can't jog or run up the stairs very fast, but I was not jogging or running up stairs before. Driving still exhausts me and makes my upper body very sore. My breath, I feel, is still somewhat shallow, and like I cannot fill my lungs up fully. My oxygen levels are great, though - even at ER the oxygen was 100.
Other than the occasional high numbers, my heart seems to be doing OK. My cardiologist says he can hear no murmur, which is great and which means my valve is working correctly. He doesn't see the need to do an echo till November again. My left arm and leg are still sore, and now that I type more every day, my arm seems to be even more stiff than before. It's annoying, but not painful, per se.

I do wonder why my numbers are so off, but I keep being told that my heart is still recovering and the working and the day to day is really working it hard and will result in higher (or lower) numbers, for now. There is no arrhythmia (despite the off QTc's), no a-fib, or flutter, thank goodness. I hope, no other reason for concern. I feel so incredibly lucky for all this, and thank God every day for this outcome, so far.

My chest and ribs still hurt, even this far out. I do some of the strength exercises they taught me in rehab, sometimes, and they seem to relax a little, but it's a pain I can definitely live with, without taking anything for it.

My INR levels have been either in range or slightly higher lately. I do like them higher rather than lower though, so I am going to take that.

I do have rare days (maybe once every two weeks) where I feel like I completely forgot that I ever had surgery. I just go about my day and push forward, sometimes walk carelessly and even my ribs stop bugging me for a quick second; and I just stop and think, "wait a minute, I had open heart surgery this year" - and it kind of surprises me. This is NOT the norm, but there are glimpses like that that do happen.

Most days, I am very tired, but I have learned to just come home and nap if that happens and let the house chores, or the answering of emails, or whatever wait till a better time.
I wish everyone much health and good days ahead.

I have no words to describe the happiness of seeing my numbers be in the normal range. If this miracle drug (Praluent) is really as mild in side effects as it's been so far and it has this kind of impact on the numbers, and hopefully, on the buildup and plaques, then it's for sure a new era for all of us. We can start making plans for the old age that are more fun than just figuring out who will handle our estate when we drop dead from stroke or a heart attack. I am just cautiously happy right now, as there are still a lot of unknowns about these drugs. But, as always, hoping for the best, and definitely hoping that there will never  be another talk about open heart surgery again, in the future.

I wish all of you: the best in your health journeys, wherever you are.

My Current Cholesterol Levels

Last Updated: March 2025
 
I thought this link would be helpful for folks who stop by for the first time, wondering right upfront what are my current lipid numbers. As you all know, these numbers change over time, so I will keep this entry updated with the results of the latest tests. 

My original cholesterol numbers are two-fold: the 1983 numbers below are the first numbers ever recorded. I was not quite 8 at the time. The numbers in 1998 are those that I started with when I moved to the US. I was 23 at the time. They were both taken when I was not yet medicated for high cholesterol, so these are my "normal" numbers. 

1983 (age 8): My levels at original diagnosis in Romania

1998 (age 23): My levels at original diagnosis in the US
Click the picture to see a larger view

My current numbers are in the table below. Please note that the Apolipoprotein B and the Lipoprotein (a) are not measured every time. Although jumps can happen, their values are somewhat constant during your lifetime, unless you have a severe illness (like cancer or an autoimmune disease) in addition to FH. 

Also, notice that the new guidelines (as of 2021, according to my cardiologist's office) have changed depending on your risk factor. For FH patients or people with a history of heart attack or stroke, or with additional risk factors for cardiovascular disease the normal ranges for HDL and LDL cholesterol are lower (green column) than for people without an underlying cause of cardiovascular disease. 

My levels as of March 2025
Click the picture to see a larger view

If you want to see my drug and food regimen, please visit this page:

http://livingwithfh.blogspot.com/2016/07/my-current-drug-regimen-and-diet.html

Thanks so much for stopping by and reading about my life with HoFH and heart disease. 

My Current Drug Regimen, Diet and Exercise

Last update: March 2025

This entry will be updated every time there is a change.

IMPORTANT I do not endorse any of the medicine listed below. This is simply my personal list of what has been prescribed to me for my condition. Every patient is different. Talk with your doctor to find out what works best for you. This is not a diagnosis entry, nor a generic list of treatment options. Also, I do not endorse any of the brands of food I am mentioning below. 

As many of you know, for people with FH exercise and diet does little to nothing to help with the numbers.  But a lot of people ask me these things, so I thought this link would be helpful for folks who stop by for the first time,  wondering what kind of regimen of food + drugs + activity I am on, for my conditions: Homozygous FH, heart disease, atherosclerosis, CVD (cardio-vascular disease). This list changes over time. The date at the top indicates the latest update, when a change occurred. 

NOTE: You will notice that I am currently on multiple drugs for lowering cholesterol. This is common for people with Homozygous FH or people who have a hard time lowering their LDL cholesterol with just one medicine. Sometimes, a combination of multiple drugs that have different mechanisms is more helpful than just taking one drug. There is no magic to finding out what combination works for each patient. It's a trial-and-error process, with lots of testing in-between until you find what is your best combination that makes the most impact on the numbers. 

The regimen I follow is not just to treat FH or heart disease, but to also treat other diseases I have been diagnosed with (like GERD, anemia or Vitamin D deficiency, for instance). 

Although the amount of drugs I take is impressive to some, I am on only a fraction of the medicine and regimen prescribed to me by the doctors I have seen. As a personal choice, I try to choose the minimal amount of drugs that make the most impact on the numbers for me, with the least amount of side effects and affects to my quality of life. 

Current diet:

• Mostly vegan, plant based, with occasional soy and wild fish
• I eat a diet low in or free of fat, with almost no animal fat (except what comes from fish)
• I get my 'good fats' from nuts, seeds, cold-water, wild fish, and some oils (canola, olive)
• I eat fried food only 1-2 times a month, and only when I eat out and there are no other options. I never fry at home. I mostly bake in the oven with no oil (that's how I make my fries), or sauté in a pan with a teaspoon of Earth Balance spread or a couple of drops of olive or canola oil 
• I use Earth Balance soy free spread and some soy-free, plant-based cream cheeses and cheese alternatives
• I use rice milk to make mashed potatoes, for baking, or with cereal
• I use vegan mayo sporadically for sandwiches (rare), to make my salad dressings, or as a binder in cooking (a 16 oz jar of mayo would last me for 4-6 months)
• My diet is high (about 2/3) in veggies, multi grains, and beans
• About 1/3 of my diet is made of carbs in the form of multi grains, potatoes, rice, corn
• I eat about 4-5 servings of fish a week
• I use sugar in the raw for my coffee (about a half a teaspoon per one cup of coffee), and no other sweeteners, desserts, candy, or sweet drinks
• The only sugary dessert I eat frequently (sometimes daily) are dark chocolate covered nuts or naturally dried fruits
• I eat a low amount of very green, leafy greens sporadically (2-3 times a week). Greens make managing my INR tricky because I cannot always eat the same amount of greens every day. Watching my INR values is paramount as I take Warfarin (an anticoagulant) for the health of my artificial aortic valve. Find a definition for INR, here: https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=international_normalized_ratio
• I drink about 2-3 servings of real alcohol (wine or beer) a week
• I usually drink non-alcoholic wine or beer 3-4 times a week
• I drink 1-2 cups of decaf coffee every day, only in the morning
• I drink a gallon or more of water a day

Current drug regimen (includes drugs for FH, heart health and other conditions):

• For lowering cholesterol: 
• Lipitor - 80 mg/ day 
• Zetia - 10 mg/ day
• Repatha injection - 140 ml/ 2 weeks 
• Evkeeza - monthly infusion 
• For blood pressure and heart health:
• Atenolol - 50 mg/ day (for heart arrhythmia and tachycardia) 
• Amlodipine - 2.5 mg/ twice a day (for lowering blood pressure)
• Lasix - 40 mg/day as needed (diuretic, for heart failure - for lowering blood pressure and decreasing fluid retention)
• Aspirin - 81 mg/ day (for heart health)
• Other medicines and supplements:
• Coumadin (or Warfarin) (a blood thinner, mandatory for patients with a mechanical valve) - the strength varies, according to INR values (INR range is 1.5-2.5)
• CoQ10 - 200 mg/ day (for muscle health, usually prescribed with a Statin drug)
• Vitamin D - 5000 IU/ day (I have dangerously low vitamin D levels)
• Prilosec OTC (for GERD)
• Allegra OTC (for inflammation)

Medicines for FH that I have taken in the past: 

• Other Statin medications: Crestor, Zoocor, Vytorin, Prevastatin - maximum allowed doses for each
• Niacin and Niaspan
• Colestipol
• Cholestyramine
• Welchol
• Psyllium husk (Metamucil) - 1 teaspoon/day
• Bempedoic acid (Nexletol) - 180 mg/day
• Zetia - 5 mg/ day
• Praluent - 150 ml/ 2 weeks (discontinued because of insurance restrictions) 

Medicines for heart disease that I have taken in the past:

• Metoprolol (for arrhythmia and tachycardia) 
• Ramipril (to lower blood pressure)
• Losartan - 50 mg/day (to lower blood pressure)
• Spironolactone - 25 mg/day (to lower blood pressure) 

Exercise and other activities:

Because I have had heart disease for many years, and because of diastolic insufficiency (heart failure) I have been limited in what I can do; I have run out of breath and caused myself angina with every fast walk, over the years. 

I have never been overweight. I am 5 ft (1.5 m) tall and the heaviest I have ever been was 123 lbs. I am currently around 120 lbs (54 kg). I have always kept active, but I have been limited in doing extensive exercises for a long period of time. On average, I go on 1-2 mile walks or I hikes 1-2 times a week. In the summer or very cold weather, I walk less than this. I also do yoga for core strength once  a week and I use an indoor exercise bike occasionally. 

Thanks so much for stopping by and reading about my life with Homozygous FH and heart disease. I hope some of the information I share is helpful to at least one person. 

Much health! 

First ER Visit Ever

I am not quite sure what happened this past Friday, but whatever it was landed me in the ER, for the first time in my life. Not many answers there, though, just a lot of “it's not that”, but what it “was” is still a mystery.

On Friday, I went to work and it was planned to be just another boring day: I had a customer call, I chatted with some co-workers about how my recovery is going, and I had a team meeting. Right before the meeting, as I stood up from my desk to head to the meeting room, I fell back in my chair, with a very, very heavy head, and the very distinct feeling that I will faint. My vision was blurry and all colors in front of me turned gray. I felt like my eyes were rolling back in my head. I felt a huge head rush come up my spine, and instantly, I got a headache, in the back of my head. Then, the rush was slowly draining down through my spine, into my legs and feet, and it was dragging all my energy down with it.

My breath was shallow and scarce. My chest was in huge cramps, and the left side of my ribs too. For a minute I thought my bra was too tight, and I pulled at it, but the cramps were deeper than that. My tongue was very heavy in my mouth, I had to speak very, very slowly, and my voice got very quiet – which usually happens lately, when my chest is in pain.

At its worst, the whole thing lasted about 5 minutes. But after that, I was extremely dizzy, and my speech was still not right. I felt like I just took 15 percocet pills and I was sooo druggy, dizzy, disoriented, and lethargic.

I went to my meeting and sat in it for an hour through extreme dizziness. I did text my husband that I am not well, thinking that if I will faint, at least he'll know to call my work and ask about me. I told a co-worker that I am not feeling well and I told him how to contact my husband, if need be.

I have been dizzy before, since my surgery, but this was different. I have not felt druggy and slow, like this was going to be, ever, and never for this long. After an hour in the meeting and another half hour after it, after not being able to walk on my own feet, and having to hold on to walls and desks to find my desk again, I felt like this might be bad, after all, so I texted my husband to come and get me to my ER. I was thinking, if I need to get in touch with my cardiologist and my surgeon, I'd rather be at their hospital.

So, off we went. The dizziness continued through the ride to the hospital (another half hour). By the time I made it there, it had been two hours where my chest and left side ribs were cramping, the back of my head (also left side) was in massive migraine-like pain, my voice was quiet and slow, and I was dizzy. Very, very, unstably dizzy.

We went in and they put me in a room and hooked me up to machines and an IV in less than 15 minutes, I think. They did blood work, and then an EKG, a CT scan of my brain and (stenotic) carotid arteries, as well as an X-ray to rule out any fluid buildup around my heart. Everything came back normal: the heart enzymes were clear suggesting there was no heart attack, the CT scan showed no brain hemorrhage, and there was no fluid in the chest.

But my heart numbers were bad. My blood pressure was yo-yo-ing between 89/40 and 140/50. If I stood up, I could not find my feet, I had to hold on to something to be stable, and my blood pressure was lowest. I didn't know what it meant then and the ER doctor didn't look concerned, but this number on the heart machine (the QTc number) was 520 almost the entire time I was there, and the machine was beeping the whole time, flashing “QTc too high”. I found out after ER that the normal QTc (or QT Interval) in women should not be higher than 450, and 470 is borderline high. Well, mine was 520. For a definition of what this number shows, visit this site: https://en.wikipedia.org/wiki/QT_interval

The ER doctor said the number I see on the machine is not accurate, and the number on the EKG is more accurate. Well, that number for the QTc was 485, so still high. As I said, he did not seem concerned. He said I didn't have a stroke, nor a heart attack and whatever it was, to follow up with my cardiologist for further investigation.

When the QT interval is too high, I found, the symptoms are exactly what I felt, and it means your heart is severely arrhythmic. I also have arrhythmia, but I thought this was controlled by my beta-blocker, which I have taken for more than 20 years now. I guess this time my arrhythmia was more pronounced than others?!

The ER staff was great and I was grateful that they did eliminate the more severe diagnoses, but I was a little bummed they still did not give me a reason for my symptoms.

After waiting for the results of all the tests for about 6-7 hours, and having confirmed that it's all clear of a “major” accident, they decided to give me a liter of fluids, to see if that will make my blood pressure rise. I was also very hungry, by that time, but with the kitchen closed (at 9 PM) they just gave me a bag of chips (salt rises blood pressure too) to eat. My blood pressure started creeping slowly up, after the fluids were all in. When I finally took a walk around the ward, I felt much better. Still a little groggy, but I could walk without holding on to the walls.

They sent me home, and this has not happened since (48 hours now after the first symptom on Friday). I did work (lightly) in the garden for 10-15 minutes yesterday and I started getting dizzy, again, but my usual dizzy, nothing like the syncope-like feeling I had on Friday.

The next step is to follow up with my cardiologist who will have all the tests they did and see what could have caused this. So far, I am just trying to take it as easy as I can (I still have to go to work), and trying to stay overly hydrated, since the one liter of water seemed to do the trick of lifting up my blood pressure. I normally do drink a lot of water, so I am not sure if dehydration was the cause for this.

Every new day is not like another one past, still. Anything can happen, I guess, and this tells me that even after 5 months I am still not “in the clear”. It also tells me that my heart is still very fragile, and that I may never feel like I will ever be truly “ in the clear”. I know they didn't say for sure that my heart caused all this, but I have a good feeling that it was my heart. My blood pressure and the QT interval numbers, along with the chest pressure I had all tell me it's my heart. And by now, I know.

I don't know what caused my heart to go into such a shock, so suddenly, with no change in routine, diet, medication, or any other external factors. I'll update more when I see my cardiologist and hopefully he'll have some answers for me.

Good health to all, and as little surprises as possible. 

 

 In the ER - notice the blood pressure is 103/41 and my QTc is 499. Not sure why I was smiling, as I was pretty scared ... 

Life at Five Months after Open Heart Surgery

Tomorrow it's five month to the date since my OHS. To recap, they replaced the aortic valve with an On-X valve, they replaced my ascending aorta with a Dacron graft, they cleaned out my aortic arch from all the cholesterol calcification (they needed to put me in circulatory arrest for these two) and they did 4 by-passes, so they harvested a vein from my left leg, and an artery from the left side of my chest. What can I say? They hacked me up pretty good.

Life has been s-l-o-w-l-y creeping back to 'normal' in the past 5 months – whatever that 'normal' means nowadays. I have started working on May 17, and initially I was working 4-6 hours a day, with working from home one to two days a week. Now, I work pretty much full time (no overtime anymore, just 8 hour days), every day of the week from the office, which is about 30-45 minutes away.

I have really good days, when I move freely and I can accomplish a lot, physically (commuting just fine, cooking dinner, watering my yard by hand some days, house chores, light shopping) and I have days when everything screams in pain: my chest, my back, my whole upper body, generally, my hips. My left arm and leg are still numb, same amount as 5 months ago. Some days they aggravate me, and they feel swollen, and some days the pain is bearable, and they just feel like annoying needles poking me.

My blood pressure has inched itself up to close to normal values and I only take it about 2-3 times a week, now, not twice a day, daily. Last time I took it, it was 126 over 50, so slowly getting the diastolic closer to 60 (used to be in the 30's and low 40's for months).

I am still not able to carry much weight. I still use a dolly for my work bags and I push my laundry baskets with my feet till they make it to the laundry room. I still “cheat” on the seat belt, and I leave it very loose across my body, because if it's tight, it bothers my chest a lot. I still need help with my heavy pots, when I am cooking, and help pilling my cat, because my left hand is half frozen, still. I still need help with grocery shopping, too. I go in for a couple of things and I manage fine, but when I have to push a cart full of stuff, I need my husband every time. Unloading and loading them from/ into my car is hard, too, so I can't do it alone, either. I tried a couple of times, and I start panting like a dog!

My chest is very sensitive, still. My incision (full sternotomy) has keloids from space to space, and it's still very sensitive and bright red. Sun hurts it even more, so I cover it pretty carefully when I am outside. I have days when my drainage tube scars are very touchy, as well, and sometimes itchy. I had a mammogram a couple of days ago, and when they did the left side (which is still frozen, numb), I thought I was going to pass out from pain. The nurse almost didn't want to do it at all, because “the scar looked fresh” and you're supposed to wait for at least 6 months to do this test, after heart surgery. I had put off mine for so long, that I went ahead and did it. But if you can wait more than 5 months for yours, do it, because I think it will hurt, otherwise.

I went on my first real overnight trip (two nights), in a hotel over July 4^th. We went to Sun Valley, ID for two nights. The drive up there was about 5 and a half hours, and the time in the car bothered my ribs. Once there, I took my sleeping setup (thick blankets to place pillows on top of, to sleep almost sitting up), but I discovered after two nights that I can get rid of the blankets and I could sleep with just two pillows and I was fine. That was a huge milestone, as now I can sleep almost flat again. I still cannot sleep on my side, though, which is my favorite position. But it will happen, with time. I know it will.

The trip was great, overall, but I did get very tired the one full day we were there, from walking around in the heat, in a hilly town. I had to rest for about an hour- an hour and a half between my two couple of hour walks that day. But I made it.

I find out that heat is my biggest enemy. The minute the temps make it over 90F, I cannot be out there and JUST BE, for more than half an hour, before my heart starts pounding and I feel like I am about to pass out, veins swelling up on my hands and feet. If I 'do work' in that temperature, I last even less than half an hour.

I have had a couple of episodes of feeling fainty/ dizzy, and feeling like my head is too heavy, where I have to sit down and rest a bit, but those are very rare now, maybe once a week or so, and they are very short lived. They usually come when I am extremely tired, after doing too much, or when I am in the heat.

This past weekend, we had a house visitor, and she had never been in our area, so I had a lot of things planned for her. Just to give you an idea, I took her to dinner on Thursday night (about an hour away from our house). Then, we drove to a resort about an hour away from our house again, and had lunch and shopped for about 3 hours, in 85F weather. The walk between the stores was all outdoors and on very steep hilly streets. Then, I drove us another 30 minutes to another resort where we met my husband for dinner. Then, Saturday, we went to a lavender farm, where we walked around for about an hour in 95F heat (or more; it was very, very warm out there!!), and then we had a cookout at our house (heat again). My ribs were hurting big time by the end of the day yesterday, from all the car rides, and driving and I was very much drained – just kept yawning early last night. This morning, I slept in, and I did get dizzy in the shower, and very tired. Today, I am taking the day off, nap, sit on the couch, and just catch up on life.

Five months ago, or even 2 or 3 months ago, all this would not have been possible! I am amazed every day at what my body can do. I still get no warning about being tired. When I have the stamina (and that has improved amazingly over the past 5 months!), I just go-go-go, and usually the following day, the tiredness hits and I have to just stop the show!

My biggest disappointment is my INR values. I am still struggling with keeping it within its range (which is 1.5 to 2 for me). Two Fridays ago, I went in for an INR check and it was 1.6 – which is good, but … it was too low for my comfort. So, I ate just foods with very low vitamin K (like tomatoes, cucumbers, pickles) for a couple of days, just to make sure I won't get it too low. About 4 days after that, I took it again and it was 2.8! I ate a serving of peas, just to make sure I bring it down a little, and in another 2 days, it shot up to 3.1! I did not change the dose, of course, and I left several days go by, with diet in between to help it down … But no way, it shot up to the skies.

In the past, when I had my 3 servings of greens a week (always the same quantity, about a cup), it was on the lower end of the spectrum and at that time, too low (after surgery my range was 2-3 and then, the INR was hanging in the 1.5 to 2 range). It's bizarre, and I have not figured out yet what I am doing wrong … Still looking for ideas and ways to manage it, and to keep it somewhat consistent. Watching what I eat every meal, like a hawk, does not seem to cut it.

I am going to the clinic every 2 weeks now, and I measure it at home, too, myself, on the “off” week, when I don't go in. I wish I could rest assured for about a month that it can live in the right range, but it has not happened yet. I am happy that it's not typically too low. Lately it's been either within my new range, or very much higher. The danger of bleeding is bigger for me than the one of clotting the valve, and for now, I am learning to live with that fear. I'll have to say, it seems to be easier to handle the fear of bleeding than the fear of clots.

I sometimes lie awake at night thinking of my “fake parts” inside of my heart – the artificial valve and the artificial aorta. I am visualizing them, and imagining them at work, and praying and casting a small blessing on them, asking them kindly to keep working for me. It's kind of eerie what they can do nowadays. I am so grateful that I had something that could be fixed. There are so many hundreds of thousands of afflictions out there that are hopeless for so many people. For innocent babies and unborn children, even. I got lucky! I am also learning to trust them more and more and seeing them as part of me, and not a strange 'body' anymore.

The one thing that open heart surgery has taught me so far, a very powerful thing, is just how much our hearts work. Right after surgery, when my poor heart was beaten up senseless, and so tired and so weak, for month, everything, even breathing, walking up a flight of stairs very slowly, showering took a Herculean effort. Sitting up was an effort, for days and weeks. Putting my shoes on took forever, and it rendered me breathless. This is how I knew my heart was not ready to do all these things yet, it was still recovering. I never take any move of my body for granted anymore, because I know of the amazing hard work that goes into it from my heart. I am so thankful and so humbled! 

The 'rhythm' of the past five months has been just 'one day at a time', and I continue to keep that stride. I never have two days alike, and every day teaches me new things about myself, and about this heart disease journey. As one of my favorite songs goes, "the only way out is through", so I'm happily carrying on through this amazingly lucky journey I have been cast on and eagerly waiting what is behind every corner, of every day. 

Much health to everyone, always!