Kate's Journal

Wow it seems like a million years ago and also like yesterday that I had my 2nd OHS (mitral, aortic, and aortic root replacement). My hubby and I celebrated together this weekend by doing some fun things around Seattle and we went out for dinner. I found a piece of rice shaped like a heart in my dinner so that was fun (I attached a photo :). It's a time of year for me that always leaves me reflective on my journey, cause yikes it was an up and down road! I'm doing well overall now but it has taken a loonggg time to get back here. I've had a lot of challenges with chronic pain, and in finding my way back to my true self. It was difficult to get emotionally connected with my “robot heart.” I had many existential crises over the last few years. I’ve done a tremendous amount of healing and have grown a lot during this time. These are issues that doctors don't talk about or seem to understand because once our heart is fixed they think we should be just fine. But for some of us it doesn’t work that way so easily. OHS is a trauma to the body, and for those of us who are very sensitive, our body and mind may react strongly. I recently had an echocardiogram and my new valves are doing well, but I was somewhat taken aback to see that my tricupsid valve was noted to have mild to moderate regurgitation. It never had a problem before, and my cardiologist isn’t concerned at this time, so we’ll continue to monitor it. And I will keep myself from going into the scary rabbit hole since of course my other valves also started with mild to moderate regurgitation! But alas, one thing that has been shown to me over and over in this process is that the only thing we truly have control over is our attitude and outlook. For those of you who haven’t had surgery yet, I encourage you not to compare your journey to other people on here. Because there will be that guy who goes out running 2 weeks after his surgery, and you might have a very different experience! I found myself going into a "what is wrong with me? I must be weak” sort of mentality early on when my recovery seemed to be going much slower than other people’s. Truly everyone’s journey is different and it’s non linear, there will be lots of ups and downs. And your “new normal” may not be what it once was, but it may be even better than you can imagine now in some ways. If you’re struggling with your recovery process, hang in there, don’t give up. Find a team of healers if you need help with pain, make sure you lean on your emotional supports, even if that means hiring a therapist! I had a massage therapist, physical therapist, acupuncturist, therapist and great pain doctor who helped bring me back together again :) Hugs and love to my 2016 heart warriors. Miss all of you!

It was 2 years ago today that I had my second open heart surgery, in which I had a double valve and aortic root replacement. I got two mechanical valves, aortic and mitral, so I’ll be on coumadin for life. I don’t write this post to scare people who haven’t had surgery yet, I write it for those of you who have had or are having a less-than-ideal recovery. I honestly think there is no way I could have prepared mentally for what was before me, and if I had known what it would be like in advance I would have said there was no way I could deal with it. But the thing is, I did survive it and I am coping with it daily. It’s important that we remind ourselves we are stronger than we think we are. That was my mantra to myself every single day during the last 2 years. My recovery process was very up and down from the start, with vomiting the night of my surgery (the pain from that was unreal!), a re-admission for Afib, another admission for suspected GI bleeding (thankfully it wasn’t), new chronic pain issues; an intercostal rib sprain, shoulder, mid and lower back pain, worsening migraines. I started going to a pain management clinic because I need pain meds longer than most people should need to be on them post OHS. I already had fibromylagia, so was already dealing with some chronic pain, but something about the surgery worsened my baseline pain level. I went to physical therapy (3 different ones over the course of the last 2 years) and only recently stopped going. One of my physical therapists told me that pain from a surgery like this realistically often takes 18 months or more to improve. During my recovery, I would see people on this group and in the Facebook valve group posting about how great they felt like within a few weeks or they’d be out running a few months later! And I felt happy for them but also jealous and left wondering why I was having such a hard time and wondering if I’m just a weak person. Comparison is dangerous especially when it comes to something like OHS. Two people can have the same exact surgery but can have a completely different outcomes based on so many factors that make us all unique! One of my doctors told me that OHS “is a controlled trauma, but it is still a trauma to the body.” I felt like my entire being and spirit was traumatized too. In the year that followed surgery, I felt completely lost and as though I had no control over my own life or body. I literally didn’t feel like myself for quite a while after surgery. I felt like an alien. I felt like I had a small clock inside my chest and the ticking played into my anxiety. I worried constantly about what it was doing, if it was beating too fast or too slow or irregularly. I worried constantly about my new valves failing, or about the consequences of being on coumadin. I felt like a burden to my husband, friends and family. As some point, I truly believed I never would feel like myself again. I experienced a pretty intense existential crisis, and really questioned the purpose of my life and why I was here and why I survived when others don’t. I really admire Adam for sharing his story about his depression post OHS in his book, and if you haven’t read that book yet it’s worth it! I had to remind myself often during my recovery process that depression is very common after this surgery. I don’t think you can’t get so close to facing your own mortality and have it not change you in some way. For some people it seems to inspire them to squeeze the juice out of every minute of life, and though I feel that way sometimes, often it made me feel confused about my purpose, unsure at times that I made the right surgical choice, and sometimes angry with the new health problems I developed from having this surgery. It wasn’t until 15 months post op that I started to see glimpses of my old self again. It took a long time to adjust and to accept my “new normal.” It also took a lot of therapy and multiple antidepressants to get to that place. I had to break off some friendships, which was extremely painful but as I’ve heard others say, sometimes during a crisis people show their true colors. And I was surprised and saddened by some of the people who I thought would be there for me but weren’t. But on the positive, it allowed me to attract higher quality friends and my life is certainly richer because of those friends. I’m still so thankful for the friends I made on this site who really helped me more than they will ever know. As for the coumadin, it does get me down from time to time but it’s not that big of a deal. I still eat kale daily, or I eat broccoli and salad greens, and drink alcohol in moderation. I have traveled out of the country and really don’t worry about it that much. I did buy a home monitoring device for my INR, though expensive it has really been worth the peace of mind for me. One of the harder things is that I used to take various supplements to help manage my other conditions but many supplements and many other drugs interact with coumadin so it is hard for me to accept that there are many things I won’t be able to take anymore. Not being able to take advil or other Nsaids is particularly tough given my pain issues! This is a side note, but my scar keloided, so it was very thick, incredibly itchy, and I’d get painful “zaps” in it. I saw my dermatologist and he gave me cortisone injections, two series about 2 months apart. I’m not going to lie, it hurt like heck getting those injections! But the result was so worth it. Though my scar is still very red and purple in spots, it is now soft and flat, not itchy and doesn’t hurt anymore! My dermatologist did say it may take years for the redness to go away though. I guess I felt some need to write this because I don’t feel we talk enough about the emotional aspects of this recovery process. Many well-meaning people will tell you to “think positively”, but for me that was literally impossible at some point in time. I know what it feels like to feel like you are completely alone, even when you are not alone. It is really important to get professional help if you are struggling with depression or anxiety of that degree. You can get better, you can adjust and have a full life again. Please don’t give up on yourself. You are needed in this world and you are loved. Wishing many blessings for good health to all of you. And thank you for reading this.

I celebrated this weekend by going out to a lovely dinner with my number one supporter, my husband. And then we went on a hike together yesterday. I pushed myself but made it through a 4 mile hike with some steep terrains. I know this isn't a big deal to many, but to me it was the longest and most strenuous I've been able to make it in a very long time. I was determined to get a picture of myself in front of this one waterfall in my new silly heart t-shirt and I stood in a darn hail storm to get that done! I've been having a lot memories of this time last year, like when I was in the OR and sedated and felt trapped in an alternate dimension. And then I remember after the surgery, waking up with a breathing tube in and hearing the nurse ask if I wanted to see my husband. I nodded that I did. She brought him in and he told me the surgery went well (I told him that was the first thing I wanted to hear). The next thing I remember was waking up with the most excruciating pain I've ever known, and then vomiting. My husband and wonderful ICU nurse took turns holding back my hair and giving me encouraging words while I puked the night away. The next few days were blurs, as I drifted in and out of sleep on pain meds. For those who don't know my story, I had a double mechanical valve replacement, and unexpected root replacement. My previously implanted tissue valve had a lot of scar tissue that had grown all around the wall of my heart and had to be scraped off, resulting in a need to replace the root. This is not normal and my surgeon said he'd never seen anything like that before so don't let that scare you. It's pretty crazy to think of how my heart is made up of a lot of carbon and mesh parts now but somehow I'm still here. This has been a very up and down recovery process for me as many of you know. I am in physical therapy for the second time this year working on some of the pain issues that came as a result of surgery. But physical pain I am used to at this point in my life- it was the emotional toll it took on me that has been the most difficult. Depression is a common side effect of this surgery. I knew that, yet thought I'd be "strong enough" to withstand it. But unfortunately, it’s not a matter of being strong enough. If you have never experienced clinical depression, which is like a dark cloud of despair constantly following you, and your brain trying to convince you that no one cares about you and your life isn't worth living anymore, then I am very happy for you and I truly hope that you never do experience it. It's not a matter of just "thinking positively" which is literally not possible when you are that depressed. On top of the surgery, we had huge changes in our life, like we had to sell our house and relocate to a new city due to my husband's new job, sold our business, my sister and brother in law moved to a different state (they were my only family in this area). Combined with a bumpy recovery, it all just felt like too much at times. I believe that my brain chemistry got totally whacked out from the surgery too, and I've been told that I have PTSD from this experience. I also suffered from "pump head syndrome," which I know many of you understand. Because of that, I lost my short term memory for quite a while and I forgot so much of the knowledge I once had in my career field. I would repeat myself often and forget what I just said. I felt stupid and it was disturbing, as I was normally someone who had an excellent memory. I had to re-teach myself a lot of information that was once second nature to me. Thankfully, my memory seems to have mostly recovered by now! In this last year, I felt like I completely lost my way for a while, I forgot my purpose and felt totally alone even though I knew I wasn't really alone. Depression makes you feel that way though. And then being close to death also changes something in you, I think, when you realize you don't actually have control over your own life and have to ultimately hand your life over to a surgeon and the powers that be- that was terrifying to me. I also developed some pretty debilitating anxiety as a result of all of this. I was afraid to do so many things because I was afraid of hurting myself, afraid of triggering afib, afraid of the sound of my valves, wondering constantly if it was normal or if something else might go wrong inside my heart. I don't want to sound like a Debbie Downer here but I am sharing my struggles because I do think it's important to get help if you are suffering from depression or anxiety. Many people are embarrassed or ashamed to talk about it because there's a stigma around it and it's seen as a sign of weakness by some. But the reality is that it can happen to anyone and it is very common in people with cardiac issues. Like my friend here Rita recently posted about, I understood the jealously in seeing other people rebound so quickly or having options like repairs or minimally invasive options. Or even the option to have tissue valves- my surgeon said if I had tissue valves that when they failed in 10 years or so, I would be very unlikely to survive a third surgery with another double valve replacement. So I chose to stay alive, which meant mechanical valves and coumadin for life. I am doing a lot better now mentally I'm happy to say thanks to the help of therapy and meds and I am finding my way out of the darkness. I am focusing on my career, on settling into our new city, and on investing in friendships that are reciprocal and meaningful. The friendships I have made here are so special and dear to me. I love my poetic and beautiful friends, Alina, Rita, Barb, Emily whose emails and words of inspiration and resonance to my own struggles helped me more than you can know. Thank you to Gail for calling me and supporting me in the early recovery days. Thank you Wanda, Enrique, Bob, Shannon, Amy, every person who has followed my story since the early days and commented on my journal along the way. And thank you to Adam for creating this community and connecting me with these wonderful people. This place here has truly been an important part of my recovery process. Wishing you all happiness and health.

It is my 41st birthday and it has me reflecting on this last year, which has just been nuts. When I turned 40 last year, I was happy all around and I felt great. I vowed it was going to be my healthiest year yet and that I was going to get in the best shape of my life. But my aortic tissue valve started to fail just a few months after my birthday in addition to my mitral valve. Though I always knew the day would come for that big surgery, I just wasn't mentally prepared. I thought for sure I had several more years. In addition to my drastic decline in health, my husband started a new job in December, which required us to relocate. We did a two part move into temporary housing while we sold a house and bought a new one. My OHS was sandwiched between two moves, which I definitely don't recommend! Well, here I am 4 1/2 months post op in our new home and I'm keeping my fingers crossed but I think I may be turning a corner physically. It's been just over a month since I was in the hospital last and no ER visits since! That's my longest stint yet since surgery. I got to teach my 7 year old step daughter how to play badminton recently, which was fun and exciting that I was able to! I had some tests done a few weeks ago including a stress echo and 2 week cardiac monitor study. My cardiologist said the tests looked great, valves are working well. I am continuing to have these palpitations (an extra beat) which are distressing to me and play into my anxiety. They can be as frequent as every 30 seconds and usually come and go throughout the day. My dr explained they are coming from the lower portion of my heart, but aren't dangerous and there's not much I can do about them. I also had two 3 second runs of afib during the 2 weeks but he was not concerned about them because they were so short and infrequent. My heart rate runs high post surgery, often up to 100 at rest. My valves are noisy especially when my HR is high so I feel better when it's lower. I am trying to manage the HR with metoprolol which I can't always take if my BP is too low. My doctor said it can take up to a year for the heart to fully heal from the surgery so I may expect these rhythm and rate issues to continue for a while longer. It's pretty crazy to think about the trauma that our poor hearts endure, that it takes so very long for them to heal. I still have a problem with my ribs in back though it is dramatically better than when it surfaced at 5 weeks post op. Several doctors have told me that my ribs must have grown back out of alignment and there's also now a lot of scar tissue that has built up there. I started having massages again to help break that up and am scheduled to get lidocaine injections. I had pleural effusions on that side when the pain started but I think that must be gone because I literally couldn't take a breath without excruciating pain before. My new cardiologist is really great. He gave me this sweet inspirational speech telling me how much respect he has for me because I've had one of the hardest surgeries and because I've had two open heart surgeries already, all of which is so uncommon for someone my age. He knew I was struggling with anxiety, and he told me to try not to worry about my heart, and to go out and get on with living my life now. I think I needed to hear that. I still struggle emotionally with anxiety and depression but I'm doing my best to work through it with support from friends, family and a therapist. I'm staying cautiously optimistic that the next year of my life will be a calmer, healthier one. Thank you to all of you who have been following my journey here and have been my cheerleaders throughout this. Your support has been invaluable to me and I couldn't have made it through without you! I send my well wishes to all of you and to those of you who are facing surgery.

Well I was in the ER just a week and a half ago due to palpitations. I'm on a cardiac monitor for 2 weeks. So far, nothing of concern noted thankfully. I started digoxin a week and a half ago for a high heart rate and have been feeling kind of lousy since starting it. I've been really tired and having weak spells but my cardiologist's office says that I'll adjust to the digoxin. I'm seeing him again in a couple of weeks after I have a stress echo. Yesterday I had my Coumadin level checked and my INR was low so they upped my dose that night. They doubled it to 10 mg which is the most I've had to take this far. Today, I got some bad stomach cramps with diarrhea and saw blood in my stools. I have IBS so stomach cramps aren't necessarily unusual for me and I have had bleeding before due to internal hemorrhoids. Well being the good patient I am and knowing that blood in stools is a potential warning sign for GI bleeding, I called my Coumadin clinic. Of course, they told me to go to the ER. I don't know why I expected they would just tell me not to worry. I had blood work checked and so far my blood counts (hemoglobin and hematocrit) are normal. However, because of my complicated medical history (double mechanical valve replacement in April), they want to admit me overnight to watch me and make sure my blood count stays stable. If it drops that could indicate GI bleeding and work require further work up. GI bleeding is rather serious. I am scared and tired and admittedly depressed. It's been a hard recovery and a difficult couple of weeks. I can't help but wondering if this is just my life now. I feel so fragile and unstable. I was on vacation just 2 weeks ago and had a great time but I ended up in the ER as soon as I came home. It seems like it's just been one thing after another. My poor husband. I don't feel very strong right now so I could use some of that and some good vibes if you can spare them. I need to believe that my life will be somewhat normal again, even though I know it will never be quite the same. I hope everyone else is doing well this week.

So I am now 3 months post op from a double mechanical valve and aortic root replacement. I was in the ER earlier this week because of frequent, ongoing palpitations. I am currently wearing a heart monitor which I'll have on for the next 2 weeks. The nurses at my cardiologist's office have said they have not seen anything concerning thus far, no afib, nothing that looks dangerous. It's just these frequent "PVCs." Sometimes they come every 30 seconds, most especially felt when I'm trying to relax or lying down. I've had palpitations throughout my life but never like this. What's even more bothersome is that I can feel my abdomen palpitating too at times. I was started on digoxin a couple of days ago because my beta blocker can't be further increased due to my low BP. I am scheduled for a stress echo in a few weeks and then a follow up with my cardiologist after. But in the meantime, I'm feeling scared because I don't know what is wrong and I don't know what to do. I don't drink caffeine and didn't feel particularly anxious when this started (I was on vacation actually). I'm anxious now though because it's been 5 days and it's quite bothersome at times. It's very hard to sleep. I can't help but to worry that something is wrong with my valves. Has anyone ever felt abdominal palpitations? Or have you found any solutions for heart palpitations? I'm walking daily, staying hydrated, doing deep breathing and daily meditation but nothing is helping thus far.

My hubby and I went away this past weekend to Sonoma, CA to celebrate his 40th birthday and we had an amazing time. The weather was perfect and it was just beautiful there. We went to some wineries, ate delicious food, took some hikes, drove down the famous serpentine Highway 101, which was both breathtakingly beautiful and scary! I was really careful not to over do my wine intake there because I'm on Coumadin and have to watch it. I did push myself a bit physically in taking some hikes. It was definitely hard on me but I did take breaks along the way and drank lots of water and I was proud of myself for what I was able to do. I felt pretty good there except at the airport I had trouble carrying my bag because it hurt my back rib pain (so my hubby carried it all) and it was just exhausting to deal with all that airport procedure. Besides that, at night I was noticing palpitations. I've had them before which is why I've been on Metoprolol for a long time. The palpitations were more frequent than normal but it didn't feel like the a-fib I had after surgery 3 months ago. They didn't last too long and I was able to fall asleep ok each night. Well when we returned home last night, I started having palpitations every 30 seconds to every minute or so. I even felt it pulsate through my stomach. I was getting scared and took Xanax to see if anxiety was making it worse but it didn't help. So we went off to the ER, which was about the last thing we wanted to do at midnight after traveling all day. They did blood work and everything was ok, including my electrolytes. The EKG was normal but while hooked up to the cardiac monitor, I could see lots of "PVCs", or extra beats. They did a chest x-Ray and I still had a little pleural effusion that no one has been too worried about. Ultimately they discharged me with no reason found for the palpitations. Kinda frustrating. I had seen my new cardiologist right before I went away and I really liked him. He actually thoroughly looked at and explained the echo my surgeon had done 2 months ago. He said that my pressure gradients were a bit high in both valves, which is somewhat expected with artificial valves, but I'm not entirely sure now how high is normal. He prescribed Digoxin for me to try to get my heart rate down because it's running high and he thinks I will feel better and hear my valves less if my heart rate comes down. The Metoprolol can't be increased because it lowers BP and mine already runs low. I am never excited about starting a new med because I always have side effects so I planned to wait to start it til after my trip. My Dr is also having me get a stress echo in a month because I still have a lot of shortness of breath on inclines and with increased activity. Well of course, I wasn't having these palpitations when I saw him last week. Today I talked to his nurse though and they want me to come in tomorrow and get a cardiac monitor. I sure am grateful that I got to have this much needed vacation and that I didn't end up in the ER while I was away. Overall it was a great trip for my heart and soul. I guess I'm still a bit more medically fragile than I'd like to think though. Well, we shall see what happens after my heart monitor. More to come! Hope everyone else is having a great week.

I've been busy getting back to living but I'm not at full capacity and had another setback a few weeks ago. I went to urgent care at that time because of this awful rib pain and shortness of breath that weren't going away. They did every test under the sun; an Xray, blood work, urine test, EKG, then CT scan. They found "trivial pleural effusions" on the CT, or a small amount of fluid around my lung on the side that hurts but didn't seem too concerned about it. I was instructed to follow up with my cardiologist the next day. My cardiologist is new to me because unfortunately, I had to switch due to moving right before surgery. Timing was terrible on all of that and not how we intended it to work out but alas that's the way it went. So after being instructed by this new cardiologist to take 1800 mg of Ibuprofen daily for a week with Prilosec to help prevent GI bleeding, even though I am on Warfarin and Ibuprofen is contraindicated with this drug, I decided I needed to find a different one. I would never take that dose of Ibuprofen even if I weren't on Warfarin so I called my coumadin clinic. The nurse there was very concerned about the recommendation, said it would be ok to take one Advil occasionally, but that high of a dose would greatly increase my bleeding risk. In the meantime, the urgent care doctor as well as my primary care doctor had suggested I take Vicodin for the pain until I get in to see the pain management doctor at the end of the month. This solution was not ok with me either, occasionally I take it when the pain is very bad, but I don't want to start taking heavy meds around the clock again. So I asked for a referral to physical therapy, which I started a week and a half ago. My PT confirmed that I have 3 ribs out of alignment in my back so that is why I have had so much pain. They've been doing some manual adjustments as well as having me do various breathing exercises and strengthening exercises. I still have a good deal of pain at night and wake up several times from it. But I don't feel as debilitated by it and I can breathe better so it must be slowly improving. I had started cardiac rehab, but didn't get too far into it because this pain was so intense. The staff there actually wasn't comfortable with me going there until the pain was better controlled. They gave me a referral to a highly recommended cardiologist though, who I will see next week so hopefully he works out better for me. As for cardiac rehab, I can't say I love it, which I'm disappointed about because I was excited about it beforehand. I am the youngest by at least 20 years, and I find it to be just boring walking on a treadmill in front of a TV that plays National Geographic movies. I haven't really related to anyone I met there either, though they are all very nice. Well, I've been walking every day at least a mile and I much prefer to be outdoors rather than on a treadmill. I've been taking some mini hikes to challenge myself, but inclines are still quite hard for me with the shortness of breath. Somehow, my INR has finally stabilized and was in range the last 4 times I had it checked. So for now I will only have to go once a month to my coumadin clinic. I was going weekly in the beginning because my level was so unstable so I'm very happy about this! Sleeping is still hard because of anxiety at night, and because of discomfort. I only recently graduated to sleeping in my bed vs the recliner (thank you Alina for sharing pictures with me of your sleeping set up!), though sometimes I have to switch over to the recliner in the early morning. I have gone from using 3 pillows under my head at night to one most nights. My scar still hurts quite a bit some days and feels like I'm being stretched apart especially when changing positions. My PT suggested I massage my scars, so I have started doing that. I still tire quite easily and need a nap most afternoons. I am now doing most of of things around the house that I was doing before surgery, but still can't lift heavy items or stretch too high to reach something. I had a month free from migraines and thought I was cured, but no such luck as they have returned and have been pretty bad with their colorful auras and all. I am not working outside of the house right now- I've been running my business which I'm in process of selling but I need to find a job soon and am pretty scared about that considering all of my physical issues. I hope to find something very part time and ease back into it. Emotionally, I've been down more in the last month that I had been before. I know you understand that going through OHS changes one's perspective. While I have huge gratitude for the gift of life and for the fact that I have an illness that was treatable, I also feel isolated and confused about my purpose fairly often. I think I especially feel alone because there aren't many people out there who have 2 mechanical valves plus have had a re-surgery. I don't know what is realistic to expect in terms of my recovery because of these factors but I know that it will take longer than many. I see lots of people here who got surgery after me that are doing much better than me and I try not to compare my recovery with theirs because it's not an even playing field, but I do sometimes anyway! After all of the drama and excitement and stress of impending surgery, the dust settles and you're forced to deal with what is before you. I'm trying to find my way back and figure out my new "normal." My body is so different, it doesn't look like my own or feel like my own with all of it's new scars and new sounds. My shape on top is just different now too. Shirts that fit me well before surgery drape off me in a funny way now and it's hard finding ones that fit right. I thank my lucky stars that I have a husband who loves me to the core and finds me to be beautiful despite all of this. I don't recognize the body in the mirror now but I am working on loving all of it, and being proud of my battle scars, but I'm not there just yet. As for the noise of my valves, can't say I've adjusted yet. My heart beat is just so loud! I can't hear it at all times but always when it's quiet and always when my heart rate gets above a certain rate. I can always feel it though and am always aware of it. My heart also feels different and intense, almost like it's too powerful for my body. I tell myself that it is very strong now and my friends and family joke about my "bionic heart." My husband and I have a trip to California planned next weekend for his 40th birthday. This will be my first plane trip since surgery and the longest stint away from home since then. I am definitely nervous and hoped to be feeling a whole lot better than I do now. But I hope that getting into the warmth and sun with minimal responsibilities will be healing for me (we live outside of Seattle where it seems we are experiencing fall and summer within the same day every day lately). Though I'm not where I hoped to be at 3 months and surgery feels like an eternity ago, I can see I've come a far way in that short time and must remind myself of this often. I saw a picture of myself when I first came home from the hospital and I was so skinny, pale and sickly looking. People who meet me now have no idea I'm recovering from OHS, so this is a good thing!

I truly cannot believe it's been 8 weeks tomorrow! Two days ago, I drove for my first time by myself since before surgery! I felt like a frightened old lady at first because I don't have great upper body mobility yet, so it was hard to fully turn my head, and there are a lot of aggressive drivers around here. I was just really afraid of getting into an accident as that would be a very bad thing right now. I've been putting a towel between my chest and seat belt when I am in the car because the seat belt still aggravates the incision, so that helps with discomfort. But driving again was also good because I felt free at last! Part of me wanted to just drive and drive and go to California or something, but the responsible part of me took over and drove me to my appointment with my new cardiologist instead :) He is a new doctor for me because I moved before surgery and it doesn't make sense to drive far to see my old one, though I loved her. The doctor said I'm "doing great" but just wanted to try me on a diuretic for a few days because I've had a dry cough since surgery, mostly upon exertion, and also still feel short of breath when I try to lay flat or go up inclines. I also have had this pelvic swelling since several weeks after surgery. My surgeon had said this is a common place for fluid collection, and that men often complain of swollen testicles afterwards- I see why they'd complain, that would be concerning! So the cardiologist said to try the Lasix for a few days and see if it helps and we'll re-assess. He also thought it possible that the coughing was still from irritation due to the breathing tubes, seems hard to believe this far out but who knows. He also told me that I won't need echocardiograms anymore with my mechanical valves, unless I am not feeling well. I will just need to see him yearly, which I thought was interesting and also strange to me as I've been having echos at least yearly for over 20 years! I also had orientation at cardiac rehab this week. Mostly it was just an intake session, and I walked on the treadmill for 10 minutes hooked to a heart monitor at the end. I'll start the actual exercise program next week. I think it will help ease some of the anxiety I have about what is "normal" and what is safe for me to do. Both the nurse at rehab and the cardiologist confirmed that the stabbing pain I'm getting throughout my incisions is likely nerve endings coming back. It can be quite uncomfortable at times and there doesn't seem to be much I can do about it, but sometimes ice packs or heat helps a little. Each week has brought about something new physically it seems, but overall I can tell I'm getting stronger. I managed to go to the zoo with my husband and step daughter over the weekend and walked over 2 miles there. I thought I'd need a wheelchair at some point but I made it without one! That was the most I've walked yet! I was beyond exhausted after but was really feeling good about being able to do it. I also felt up to shopping with my hubby the next day and went to 3 stores. I did need to stop and take a Starbucks break before the 3rd one but it was nice to be out and about in the world. Today I got to get my hair done for the first time since surgery, which felt like the ultimate luxury. I've had my hair in a pony tail for the last 8 weeks because I still can't manage to style it yet and my rapidly emerging gray hairs were driving me crazy. It's really good for my soul to be able to do these regular human activities again. I'm still not cleared to walk my doggie, they want me to wait to closer to 10-12 weeks post op. She is a bigger dog (a greyhound) and though she is gentle, she has a tendency to pull me or stop short while walking so I have to be very careful of protecting my sternum. That's inconvenient and expensive to have dog walkers, but also not worth the risk for me to do it myself. I run my own business so I've been back to that since post op week 3, whether I wanted to be or not. My brain was quite foggy for a while, but I think it helped to keep me distracted from my health issues and helped recover some of my missing brain cells. I feel grateful to be able to work from home and that I have flexibility in my schedule because I definitely wouldn't be able to work outside of the house yet. I don't know how people go back to work at 6 weeks post op. The balance is still making sure I don't do too much because I always pay for it in pain later. I've had a lot of pain in my shoulders and neck, and still have a lot of trouble getting comfortable at night. I sleep in my recliner mostly , but have been able to transition to my bed a few nights this week propped with multiple pillows. All my life I've slept on my side, and find myself now rolling to my side at night but then I wake up feeling like I'm crushing my shoulder and chest and it's quite painful! This recovery process is not linear, it's very up and down. You will have good days and you will have bad days, as many others have said. It's hard not to get discouraged sometimes when you feel you are making progress, and then have a few hard days after. I've had a lot of fears about what is "normal" and a lot of unrealistic expectations about what I "should" be doing at various stages. You get a paper from the hospital about certain milestones you should be able to achieve along the way, and at 6 weeks magical things are supposed to happen, like you are able to drive and do heavier housework and lift over 10 pounds. But I was definitely not ready to drive 2 weeks ago, and there's still a lot I can't do. It's very hard emotionally for someone who is normally physically and mentally active to slow Way down and put healing above everything else. But I know I'm making progress and try to focus on that. I have to remind myself I had a "big deal surgery" as my surgeon said and that it will take longer to recover than it might for others. I have also been through OHS before so I know it's a long road to full recovery, but I also know that I won't always have this pain and that someday I will feel better. I had my aortic valve replaced initially 11 years ago, but my mitral valve has always been stenotic. So I think I never got to feel 100% good because that mitral valve was never healthy. With my latest surgery, both my mitral and aortic valves were replaced, so that gives me hope that I will someday have energy again and will feel better than I have in years, or maybe ever. I admit I'm still adjusting to the sound of my valves. It's only when it's quiet that I hear them. And my heart just feels weird now and different. It's hard to explain. Every doctor I have seen has told me that the sounds are normal and all is good. I get sad sometimes that this is my new reality, but I'm also trying to change my attitude about the sounds. So instead of fretting about them, I'm trying to change my thoughts to tell myself things like "they are doing their job", "your valves are working great" and also to thank them for saving my life :) My husband finds the sound of my valves to be comforting, so I hope I get there someday. I also just want to make an invention, like a sound proof bra or something! Haha! I'm thinking about everyone who has upcoming surgeries and who are in the recovery process too. We all have our journeys, all hard, but some harder than others. I feel for all of the people who have surgery ahead of them because I know that it is intensely scary and can be all consuming. I think the thing that has helped me the most is visualizing the outcomes I wanted for myself after surgery and having goals to look forward to. One of my goals is to hike an ancient ruin in the next year, maybe in Belize or Mexico. I tried to do it a last year in Belize and I felt like I was going to die because I was in rough shape, my valves were both declining but I didn't know it then. Before surgery, I made a "vision board"- it may sound a little out there but it has helped me so much! It has images and words of things I wanted to achieve post surgery. I looked at it every day before surgery and I look at it every day now. I wept when I saw it again after I got discharged and home because a big part of me didn't believe I'd survive that surgery. I've worked in hospitals before and I've seen people survive crazy things that you'd never think possible though. I've learned that the human spirit and will to survive is an amazing thing and will get you through all of this. Hope everyone has a great weekend, wherever in the world you are.

Kind of an odd question. But for those of you post op: I am getting these weird pains around my incisions that feel stabby, like "electrical" is the only way I can describe it. My thought is nerve endings coming back. But I am just wondering if anyone else has experienced this? I'm 6 weeks post op now. Of course I'll call my dr if it persists or get worse, but just wanted to know if anyone else knows what I'm talking about?

Just wondering if many of you developed a fast heart rate after surgery? I did have a-fib after but the doctors were thinking that was temporary from surgery. I was on amiodorone for it which they stopped last week. Yesterday I woke up with a fast heart rate , 100 bpm at rest. This morning was 106. I called the dr yesterday and he told me that it is common to develop a fast heart after stopping the amiodorone. He mentioned trying to increase my metoprolol if the high heart rate bothers me. I only take a 1/2 dose metoprolol now because it dropped my BP so low with a full dose. But I admit this is freaking me out a little , largely because I can feel my heart beating hard and it is also loud with my mechanical valves. And probably because I have been afraid the a-fib will come back!

I'm going on 5 weeks post op tomorrow and I admit I'm frustrated by some setbacks. I felt really good yesterday in terms of pain, I was fatigued but had minimal pain. I did some light chores and took a walk, did some work on the computer for my business, nothing crazy. I didn't do anything that hurt me and feel like I have been listening to my body. At night, I sat in a chair by our apartment's pool while my husband and step daughter swam. I didn't stay long but afterwards got this terrible pain out of nowhere in my upper back. The night before I tried sleeping in my bed for the first time post up. I used a sleeping wedge and was propped with pillows. I slept most of the night there but kept waking up with various body parts asleep so I don't think it was great for me and don't know if that is what triggered this pain. I am sad because I just wanted to feel "normal" and sleep next to my husband again. Falling asleep with his arms around me has always been my favorite part of my day and I miss that. I miss being able to just lie comfortably on my side in my own bed. Little things I took for granted before all of this. Today I woke up really hurting a lot still, all in my shoulders, my chest, my upper back. I've also had a recurrent pain in my right rib. I did a few stretches, and ended up taking 1/2 Vicodin to see if it helps. I feel like I've moved backwards because I've not needed to take pain pills during the day since week 2. I've been taking XS Tylenol most of the time. I thought at this point my pain would be lessening. I have found that every day is different and I really don't know what to expect from day to day. I have a few really good days and then a few bad ones with pain and exhaustion. I told the NP at the surgeon's office last week that I feel I am being stretched apart, and she said "well you were stretched apart." She reminded me that though it was "controlled trauma" my body went through a huge trauma nonetheless. She also brought up my fibromyalgia, hard to know how much of that is contributing. I managed that well with yoga before surgery which I can't do yet, of course. I try my best to stay positive but I guess today I'm struggling because I am hurting so much. I re-read the chapter in Adam's book the other day about his recovery process and how at week 5 he was still needing a lot of pain meds and struggled to get off of them. It made me feel less alone. I do know that this process is individual and that we all heal at our own rate, but it's still hard for me to feel like I "shouldn't" have so much pain at this point and "should" be able to do certain things by now. I can't remember much about my first OHS except that it took 3-6 months to really feel better and a year to feel like myself again. I was 11 years younger then and it wasn't as big a surgery as this one was. But yet, it's really hard to be patient with myself sometimes. I want life to go back to normal. I've not been in great health for a while now when my heart started declining months before surgery and now with this recovery process. Perhaps the dreaded cardiac depression is hitting me today. It comes and goes but usually, thankfully, doesn't stick around long. This experience has truly been a lesson in taking life one day at a time, one moment at a time. Thanks for listening. I imagine some of you may understand my feelings.

I keep hearing in my head the lines from that that Grateful Dead song "what a long, strange trip it's been." This has truly been a crazy 6 months, from the time of learning that my previously replaced tissue valve was failing to now being in the recovery process. Four weeks ago, I had 2 mechanical valves replaced in both my aortic and mitral valves. I ended up needing an aortic root replacement too because, according to the surgeon, my previous bovine valve had grown so much tissue around it and into the wall of the heart that they had to scrape a lot of tissue off the wall of the heart. He also said that it appeared that too big of a valve was put into a spot that was too small. He said he had never seen anything like it before. So strange and disturbing because I specifically remember my first surgeon saying he put the largest valve into me that he could in hopes it would last longer. And that first surgeon is a well respected one but obviously they don't know everything. And who knows why that really happened. I just feel grateful to have had a surgeon now who knew how to deal with it and was confident about what he was doing. Today was my one month follow up with the surgeon's office. They feel I'm progressing well at this point and I'm even cleared to drive. I'm not quite ready for that yet though because I do have a lot of discomfort still and driving sounds like not a great idea to me yet. I had complained about having a cough at night so they had me get an echocardiogram today to be sure there was no fluid accumulating around my heart. They also had me get bloodwork to follow up on the anemia and to check my liver function tests. I am still waiting on the lab results but they said the echocardiogram looked good! I remember reading in Adam's book about how he cried when he saw his surgeon in the office for the first time post op. I felt the same way today when I saw my surgeon again. I posted a picture of us earlier today on here. I hugged him and told him I was so happy I chose him because I had talked to several other surgeons and I knew he was "the one." It felt good to have the chance to tell him this and to thank him. I had such mixed emotions being in that office again because the first time I met him there, he talked about the serious nature of my condition and impending "big deal surgery". And I remember crying my head off because I was so scared. It's so good to be on the other side of this thing. There's so much build up and so much fear going into it. None of us can see the future and that's what was scariest for me, not knowing if my life would continue after that surgery. And losing the control I thought I had over my own life. I had so many tearful conversations with my husband before that surgery. I feel like I'm doing pretty good now considering what a big surgery I had. I think one of the keys is that I reached out for support from my family, my friends, my Facebook friends, and this group. Last time I had OHS, I tried to keep it to myself and really only told a few close friends and family about it. Asking for help is one of the hardest things for me for some reason, but I am learning that most people want to help and it makes them feel good to do so. But they need to know specifics on what you need! I've been really surprised by the people who have offered us help through this actually. What I'm struggling with these days is fatigue and discomfort, especially towards the end of the day. I have a lot of various muscle pains, though I have fibromyalgia too so not sure if that's contributing. I cried when I got the echo today because it was so painful to lie on my side. I am still sleeping in my recliner at night so that was my first time lying on my side and it was not so good. I hired an assistant to help with some things around the house and to help with meal prep. I still have a dog walker because I have a big dog and they don't recommend I walk her yet until my sternum is fully healed. I also found a massage therapist who will come to my house too and work on some of the muscle pain. So I scheduled myself a massage, which will be a nice mother's day treat to myself. As for the a-fib I developed post op, I'm seeing an electrophysiologist tomorrow so he can evaluate it and see if we can start weaning me off amiodorone. Turns out that drug really affects INR, which may be one reason it's been all over the place. I'm not going to say that being on Coumadin has been easy yet. It's going to take time to get it stable. I wish I didn't have to take it, but in my case it was my only choice so I'm just trying to accept it and not worry about it too much right now. My hope is that someday in my life there will be a different drug that will be approved for valve surgeries that doesn't have the same risks. The biggest reason I chose mechanical valves is because I do not wish to have open heart surgery or any kind of heart surgery ever again if I can avoid it. It was highly recommended that I get mechanical by the few surgeons I spoke to and I agreed with them. The fear that comes with this process is just so great, it was like a well of unending sorrow and despair for me. And then the recovery process was rough for the first few weeks, to say the least. It was so hard emotionally for my family and for me leading up to this surgery. I don't want to put them or myself through that stress again. I don't want to experience that level of pain again either. I was told that my risk factors would be so huge if I had OHS again, especially because I have 2 valves affected. I am at peace with my decision. I am getting to used to the sound of my valves. I do hear them clicking especially at night. And I have to remind myself that they are just doing their job and this is a good thing. My advice to those going into surgery is get as much support as you can, ask for help and be specific about what you need before and after, make sure you are comfortable with your surgeon and if you aren't, seek out other opinions until you find a surgeon you fit with. I did a Lot of visualizing about my life after surgery, and specifically pictured seeing my surgeon after surgery with a big smile on his face telling me that all went well. When that actually happened, I got really choked up with gratitude. Sorry for the epic length post. Thinking about all my heart brothers and sisters who have been through this already, those who have been through so much more than I have, and for those of you awaiting surgery. We are all so much more resilient than we realize.

Yesterday was my 3 week surgery anniversary. I am finding it more difficult to be on my own than expected! My parents live far away and they flew home on Tuesday. I have more discomfort since they left because inevitably I'm doing more for myself. My husband works full time and long days. So we are looking at hiring an assistant for a few hours a week to help with things like laundry, cleaning, meal prep, grocery shopping and getting me to my many doctor appointments since I can't yet drive. I guess I'm just wondering from those of you who are post-op, at what point were you able to start doing your regular household chores, like laundry, light cleaning, cooking etc? And how long did you need pain meds? I know it's going to be a bit different for all of us. My surgeon said my recovery may be longer than my first surgery because it was a double valve replacement this time. I will be seeing him next week for my follow up. But in the meantime, I'm just trying to get a sense of what to expect and how long I may need help.

This has been a tough one for me so far. My INR has been in range maybe twice since starting on it 3 weeks ago. I've been consistent with my Vitamin K foods. My appetite is still off though and I'm not eating nearly the amount of vegetables I normally would. I am a fan of supplements and I was using them to treat my other health conditions, they really helped. But I've had to stop all of them because of potential interactions with Coumadin. That's been tough for me to accept. I am on Amiodorone for a-fib which I am told affects INR too. They are going to try to wean me off of it soon, which will further complicate my Coumadin management. But I'm just wondering for others on this drug how long it took to get it stable or did you get it stable? I know it's only been a few weeks and will take time. For the forseeable future I'll be going to the anti coagulation clinic twice a week until it stabilizes.

The first week and a half was rough for sure in terms of excruciating pain and nausea. And I had a-fib that sent me back to the hospital for a re-admission just a day after my first discharge. It felt like my heart was shaking my entire body. It was so intense and scary. It settled down within a day of being on meds though my hospital stay was extended 4 more days until I was stable and my INR was therapeutic. Being in the hospital was truly trying in every aspect. I felt as though time was standing still there at some point and that I would never get out. Emotionally, I was in rough shape the day before I got out because at that point I had no idea when I was getting out, I found myself questioning why I even did this stupid surgery. I felt like such hell, I was losing weight rapidly because I couldn't eat, I was in pain, I missed fresh air, sun and good food and I was losing faith that I would ever feel good again! But fast forward just one week since my discharge and I feel like a different person! My dad and step mom were here this last week and they arrived the night I was discharged. They said they were afraid to hug me because I was so frail and weak, and my color was terrible. But today when they left, I easily walked them outside to the parking lot and gave them big hugs. My dad and I set some walking goals that I easily achieved yesterday. I can re-heat my own meals now, as long as everything is in reach. I can just about get myself dressed and undressed, though my husband still has to help with my bra, pullover shirts and sometimes my coat or sweater. I have been able to go out to eat at restaurants several times with my family this week. When I first went to the lab after discharge, I needed a wheelchair to get me from the front door to the lab but I can walk that distance now. I am someone who has dealt with chronic pain for years due to fibromyalgia, migraines and IBS so I fully expected at this stage to be in terrible pain and exhausted. I have been so pleasantly surprised that my pain is mostly controlled with just extra strength Tylenol, plus some Lidocaine patches, heat or ice. The pain is not terrible by any means, just uncomfortable at times. My biggest challenges are my appetite and sleep. I have become super sensitive to the taste of salt, where everything with salt tastes gross and as though I'm eating a salt lick. Vegetables are basically repulsive to me. I have a metallic taste in my mouth and still not sure if it's meds or surgery related. Sweet foods, including fruits taste good. I consumed a lot of sugary foods, including Iced decaf Starbucks coffee with lots of syrup, at first which wasn't great for me because I had terrible thrush in my mouth plus is just not healthy. I am a dietitian but admittedly having a hard time balancing my diet between the nausea, taste changes, my IBS restrictions, thrush, and Coumadin management! So for now, I just try to be sure to get high protein for healing, and otherwise just eat what tastes good to me right now. I think I'll figure this all out eventually as things get back to normal. As for sleeping, each night after I've been asleep for 1/2 hour or so, I wake up scared and feel like my heart is pounding. I've checked my pulse and BP at these times and it's been normal. I'm not sure if it's just anxiety or if I could be having fluid issues. My ankles are just slightly swollen, and I haven't had any rapid weight gain which they said would be what to watch for. I don't lie flat but sleep in my recliner somewhat upright. I see my cardiologist this week so will be sure to discuss this. I understand insomnia is a problem for many people post surgery and am curious how others have dealt with this. Today I woke up with an eagerness to get on with my life, to plan a much needed vacation with my hubby, and figure out what I want to do with my career. I feel filled with gratitude for having healthy, retired parents and in -laws who were able to come out here and help us through the roughest of days. I feel so thankful and glad to be on the other side of this crazy surgery and to be alive!

Anyone else who has had full OHS understand this feeling? I'm into my second week and I feel as though my insides all around my incision are stretching me apart. It doesn't hurt exactly but is uncomfortable in some way, like this pulling feeling, and I feel the need to brace myself with my pillow. Last night, I choked on a pill and have felt this discomfort since then. I think and hope that I'd be in terrible pain if I actually dislodged something inside. I am just wondering if this discomfort is just part of the healing process. Each day brings something new in terms of areas of discomfort, even though the pain is very manageable at this stage.

Wow, it has been a rough 13 days since surgery. Yesterday I found myself wondering why I even got this surgery because I've been feeling so awful and stuck in this hospital feeling like I will go insane. But today is a new day. My afib seems to be under control, my INR tanked when I got admitted but is just where it needs to today! Nausea is so much better and I was actually able to eat a real meal today for the first time in days! The sun is shining here in Seattle. I can't wait to step out of these hospital doors and hopefully never need to come back.

I'm sad to say I had to come back to the hospital and was re-admitted for afib. I had had one episode of it while I was in the hospital a few days ago, but because it was short and my heart corrected itself, the doctors weren't too concerned. After spending one great day at home though, I started feeling all kinds of heart racing and irregularities yesterday morning. The on call surgeon told me to come to the ER. They did an echocardiogram and xray to rule out pleural effusions, but both were fine. They did capture the a fib on the EKG, which was good. But because of it, they felt they needed to re-admit me to the hospital to start some new meds and to be monitored. My INR also dropped a bit so now need to get that in range before I go home. My BPs have been extremely low like 80s over 40s. I'm pretty bummed to be back in the hospital, I really thought I was out of the woods:( This has been a monumentally rough week, and it's taking quite a toll on my husband and I both. It's really hard to see how exhausted, burned out and worried he is. I know a fib is a common side effect of heart surgery, but it is scary to feel it happening. I hope they can get this all sorted out quickly so that I can go back home and truly recover from all of this.

I managed to get out to the lab today for my INRcheck, which felt like I had run a marathon by the time I got back home. Immediately I needed to go back to bed. I'm still having a lot of pain and if I don't stay ahead of it, it becomes severe quite quickly. Along with pain, I'm been struggling with nausea and poor appetite since surgery. Everything tastes gross and makes me want to vomit, but I did discover that I have major thrush in my mouth so that can be contributing. I have started a treatment for it so hope it helps. In the meantime, I am forcing small frequent meals. I have not wanted visitors all week because I have felt so awful. Literally all I want to do is sleep, I can hardly keep my eyes open long enough even to watch a show or read a book. I assume I'm catching up from lack of sleep in the hospital plus recovering from the huge trauma of surgery but I'm curious if others felt this exhausted once they got home?

Wow what a rough week. Surgery ended up being more intense than we expected. I had my mitral and aortic valves replaced as planned. But when they got in there found my aortic root needed to be replaced too. They also ended up having to open me up a second time that night for suspicious bleeding. Sounds like it was a really scary night for my poor family waiting. I was expected to be in the OR for 5-6 hours but surgery took closer to 9! I needed quite a few blood transfusions which I hear is typical for re-operations. Despite everything that was done by the anesthesiologist to pre-emptively treat my nausea, I spent much of the first night wretching with dry heaves. This whole week here has been quite a challenge in controlling pain and nausea. I also kept having low grade fevers that made me quite uncomfortable. I had a first episode of afib yesterday which felt really scary and induced a panic attack. They have assured me this is very normal and that it's a good sign that my heart was able to regulate itself and go back to normal without drugs. My appetite has been awful and I disovered today that I have thrush in my mouth, but I was able to eat a whole sandwich today despite it so this is progress! I've hit all the major milestones they wanted to see, taking my 4-5 walks a day, sitting in the chair for meals, bladder and bowels working, and my PTT/INR and platelet counts just bounced back up to normal today so I can go home! I don't even know if this status makes sense cause my brain has been not real functional so I apologize if it's incoherent. I went back and read all of your comments when my hubby was posting for me and I want to thank you all for your support and encouragement and for virtually holding my hand through to the finish line!