FH Advocate for Awareness- Alina

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

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Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

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 and bras.

  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 never be able to wear low cut t-shirts anymore. I have had to alter my bras 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. For ladies only: Coumadin changed my periods drastically. Originally, they stopped for a couple of months. Then, they went from 4 days long to 10 days long or longer.

  97. 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.

  98. 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.

  99. I am not able to wear any heavy necklaces on my chest , even at 6 months out.

  100. 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.

  101. 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 use this site to find out what foods contain most Vitamin K: http://inrtracker.com/nutrients. 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.


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http://livingwithfh.blogspot.com/2016/08/100-things-i-wish-someone-had-told-me.html

Blog Post by A.W.

About this Blog

In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.

5 Responses to “100+ Things I Wish Someone Had Told Me before I Had OHS”

  1. Kevin compo

    This should be read by every OHS patient prior to the procedure. If I had read this and found my name at the end of it I would not have been surprised. Exactly my experience. I would have been much better prepared for this epic event having read this first…..The confirmation I received after reading this ( 4 weeks out) is a God send…thank you more than I can say…

    Kevin…….

    Reply
  2. Trish McDonald

    I am asking this question on behalf of a friend who is at her 8 month mark with her new heart. She is suffering very badly with constipation. She has taken every over the counter medication including medication for pre colonoscopy, also has had Ultra sounds, x-rays (all seems well) and a meeting with her cardiologist – she still is constipated. She has no appetite, has lost 10 pounds in a short time and is fatigued. any suggestions? thanks, Trish

    Reply
  3. Lyndsay

    I am going back to work next week after two months off. A little nervous. But today my mom saw a 2″bald spot on the top of my head. Last week 8t was the size of a nickel. I’m not sure what is going on. Did anyone else have this happen?

    Reply
  4. Rick

    I just gone through OHS and was in a similar situation. No knowledge of what to expect.

    I am now 4 weeks in to recovery and hyper sensitive to the recovery experience and process. Everything that doesn’t feel as it should freaks me out.

    The DR just took off the sterile tape and it feels weird. They also used heavy silk for sutures and from what I googled they’re pemanent… while that is not a problem there is one part of the stich in my arm that has a small piece of thread sticking out and its catching everything I wear.

    Also when sitting and then getting up I feel like my chest is glued and it’s stretching when I stand…. I don’t know if that is normal… there is not enough information on google / community on what to expect and not to expect pre and after OHS!

    This was helpful…

    Reply

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