Sign My Guestbook

Leave any well wishes, thoughts, ponderings, musings, reflections, meditations and ruminations here.

Not sure what to write? Here are some ideas to help you get started (borrowed from CaringBridge):

  • Keep it simple. Any guestbook message, no matter how brief, means the world to me.
  • Share a memory – a favorite moment or funny story – something that will lift my spirits.
  • Offer me a distraction by filling me in on recent happenings in your life.
  • Jokes, gossip, and internet memes are not only welcomed, but encouraged. (Okay, I made that last one up.)
Advertisements

99 comments

  1. Hey there! I just found your blog, and I’ll keep on reading. We just don’t know what we’re capable of until we find ourselves going through it, don’t you think? Thank you for writing … now off to read moar.

  2. You have been so incredibly right on in everything I’ve read so far! Thank you so much for sharing your most raw emotions! It helps so much to know I’m not alone in these thoughts!

  3. Hi Summer!
    I found your blog a year and a half ago when I was first referred by my cardiologist to a cardiothoracic surgeon (my BAVD was found when I was young so I’ve always been monitored). I am scheduled for surgery tomorrow morning to replace my valve and ascending aorta.I am sorry that you are going through all the emotional baggage of dealing with this super stressful life event. I just wanted to let you know that your to blog has been a source of comfort and strength during my journey through this world of heart surgery. I am a 29 year old female and finding information that pertains specifically to my situation and future recovery was very hard. I hope that you are able to get to a point of putting the whole experience behind you and living your life without so much daily stress very soon!

    • Hi Deanna,
      Thanks so much for your kind words. I’m so glad it’s been helpful for you. Feel free to reach out anytime. Best of luck with your surgery today!!

    • Deanna, I had my BAV and root replaced 17 mos ago too. Like you, I always knew it would happen someday, but ended up with emergent surgery after they found an Aneurysm (8 days prior to surgery-I didn’t know for another 4, when I went to the ER!), and when they did the CT scan in the ER (and angiogram the next day) they realized it was growing at an astronomical rate, so I literally found out I needed near immediate surgery 3 days prior!
      Anyway good luck with your surgery..

      Summer, just wanted to reiterate how much I love your posts!! I really hope that one day, I can gather my thoughts together clearly and coherently enough to do something kind of similar to your blog. As of right now, really all I have posted are a couple articles related to my post-surgery cognitive issues. One day, I’ll actually start writing my own stuff! Lol. Thanks SOOOOOO MUCH for doing this and sharing it! You’re definitely an inspiration to me!

  4. David

    Hello.

    I saw a story on Boing Boing a few weeks ago with an link to your blog and I bookmarked it, though I didn’t read it properly at the time. I was a little bit scared, to be honest. But this weekend I sat down and read every post. Short version: thank you for sharing, and so eloquently. My situation isn’t identical – my aorta is ok, but my BAV will need replacing – but I recently found out that things are progressing much quicker than expected. Your blog is the first thing I’ve read by someone in a similar position, and it has really helped to read it. I’m still scared by what’s ahead of me, but now I feel more able (and determined) to face up to the way things are.

    I wish you the best with your continued recovery.

  5. Christine

    I had OHS 15 months ago (when I was 46) and you have very articulately put into words the emotional challenges I have faced. PTSD is very real and very debilitating and it is a daily struggle to move forward. I admire your drive and strength and I offer you my encouragement. Every week is a little better. Every month is a little better. Keep walking. Walking helps me more than anything else.

    Christine

  6. Joe Lisieski

    Greetings, sister of the heart and the knife! Wow, amazing heart-op photos online! While listening to you, and your heart, on Radiolab I felt your pain, your curiosity, your learning and discoveries – and relived some of my own. It is good to hear that you are working towards a more positive experience of the intrusive post-op heart sounds. Your blog is pretty amazing! Your heart and soul are strong and sharing.

    I’m a 10-year veteran of the ascending aortic aneurysm repair, and, they threw in a bovine piece to replace the calcified and worn bicuspid aortic valve to boot, since they were already in the close-by neighborhood. In 2005 upon returning to Pennsylvania from a two-week family vacation in Colorado, which included a some time frolicking above 14,000 feet, there were four messages on the answering machine from the cardiologist. Each was more urgent than the last, with instructions to call about the results of imaging studies performed just prior to departure. I did not commit at the initial consult with the surgeon, because, after all, wasn’t I just out climbing around the high hills of North America, and my fair age of 55 years would account for any other shortness of breath. The Angels of Science Journalism visited that very day when the latest issue of Scientific American arrived in my (snail)mailbox. Providentially, the chart on page 68 clearly told me that my 5.5 cm aorta lay at the base of a steep curve towards the forbidding destinations of Morbidity and Death. The chart is part of the article, “Beating a Sudden Killer,” about – aortic aneurysms, of all things! (http://www.iradonline.org/pdf/elefteriades.pdf) Literally, I got out of the car after the hour drive back from the consult, all the while trying to calculate, plan, and negotiate with myself and the Fates, opened the mailbox, and there it was – a definitive answer in my native engineering language of charts & graphs! I do wonder at the part of me that needs the impersonal chart in a mass-distributed magazine to confirm the up-close and personal advice of the surgeon. The data and the article clinched it, and I was on, and off, the OR table within a few short weeks. Now some of my most moving reading is the surgeon’s operation report, which, with the aid of a medical dictionary, provokes shivers of awe and brings a tear of gratitude to the eye.

    Though you’ve probably heard this, here’s the story of Dr. Michael DeBakey, the heart surgery pioneer who had devised the repair operation in the 1950’s that saved him from a dissecting aneurysm at age 97 in 2006. (http://www.nytimes.com/2008/07/13/health/13debakey.html?pagewanted=all) Just love anecdotes like this one from some of his earlier experimentation in the 1950’s: “Seeking to use synthetic instead of cadaver grafts, he went to a department store to buy some nylon. The store had run out of it, so a clerk suggested a new product, Dacron. Dr. DeBakey liked its feel, bought a yard and then used his wife’s sewing machine … to create his first artificial arterial patches and tubes.”

  7. Tanja

    Hi Summer,
    I love your blog! Just found it after listening to your story on Radiolab.
    My son was born with the exact same heart condition and had the same surgery in Sept. 2012 (at 11 years old then). Seeing him going through it was quite traumatic. Although he recovered very quickly and is well, it took me a long time to find peace of mind, always trying to put together all the pictures in my head. We received a 20 page surgery report, but it could by far not express what your blog and pictures just did for me now.
    So thank you for that! I wish you the very best and hope you get to enjoy life to the fullest!

  8. Maddie

    Hi! I heard your story on Radiolab and wanted to say how nice it is to know there are women out there like me. I’m now 35 but have had 2 AV replacements; one when I was 25 and the other 34. I have found it difficult to find others who have had this surgery that I can relate to. Thank you for talking about your emotions during the process. I literally cried listening…especially when you were walking about the pain! Thanks for sharing your story.

  9. Ian

    Hey Summer, I learned about you though Radiolab. Im 25, but when I was 10, I had open heart surgery to repair a VSD. I was terrified at the time, but everything turned out ok… initially. Beginning in middle school, I began suffering from horrible panic attacks and was triggered by every palpitation into thinking my heart would stop and I would die. With therapy, this came under control. Now I am mostly ok, there are good runs and then the anxiety will come back. I think part of the problem with me is that I am super tuned in to everything going on in my body because of the surgery. Sometimes, I feel the bionic heart sensation, as you call it. Other times, my stomach might squeeze but I’ll misinterpret it as a palpitation. It can be hard. I want you to know that you are not alone, and all of us in the zipper club know that when the surgeons say “you are fixed,” thats only a half truth.

  10. Hi Summer,

    Thank you for sharing your story. I wanted to reach out because I’ve been approaching other people being able to hear my heartbeat from a very different place from you–by amplifying it on purpose! I’ve been working on a body literacy project based in San Francisco for the last 3 years called We Are Movement, and our biggest project has been to amplify people’s heartbeats in public space, on public radio and in gallery settings. The effects have been profound.

    I’ve spent hours having strangers listen to my heartbeat, and know what an intense, at times vulnerable and empowering experience it can be. Although the sensation of my heartbeat is always with me, I also am aware that I can turn the stethoscope off, and thus can only imagine the journey you’re on. (I guess that translates into offering a bear hug, and/or a shot of whisky!)

    A huge part of the work I’m doing is based in the effect that listening to a heartbeat has on the nervous system. I’m curious if you’ve heard about the Polyvagal Theory, by Stephen Porges? The vagus nerve is related directly to the heart, to HRV, and is a key player in the parasympathetic response; what’s been fueling my work is that usually listening to a heartbeat brings up vagal tone which allows for all the physical movements of social engagement—facial expressions, prosody in the voice, smiling, eye contact, etc. All of that actually creates a feeling of physiological safety. (Sometimes of course it lowers vagal tone, which is evidenced by people fainting, vomiting…although I’m surprised to say that I’ve not had anyone experience that during our heartbeat soundscapes.)

    There’s a lot of info (though a little simplified) on our site, and I’d love to connect with you more!

    With awe,
    Katy

  11. Jacqueline

    Hi Summer,

    By chance I heard you on RADIOLAB last night and your words were literally close to my heart. Your story is so similar to mine it’s almost scary! Just replace your genetig defect with mine (Marfan Syndrome) and your bionic heartbeat with my extrasystoles and a noticeable heartbeat 24/7. I felt horrible for more than two years after my completly successful surgery in June 2011. And it was until yesterday that I thought I was the only person on earth having reacted like this, but now I know there is at least someone else – you. I am perfectly ok today but it was a long an rocky road to enjoy life again…

    Wish you all the best and thanks for sharing your story which finally found it’s way to me 🙂

  12. Elizabeth Martin

    Summer,

    I saw my cardiac team at Stanford today and my nurse encouraged me to listen to your podcast after we discussed physical and mental reactions to “flutters and flip flops” that I get due to having a rare tumor in my left ventricle. While I was not able to find the link to your podcast, I have been engrossed in your journal all evening. Many of the feelings you express are the same that I have and it is so nice to hear that what I feel is real. There is no other case like mine to compare with, I am one of one my doctor says, and sometimes I will think what I feel is nuts and possibly unrealistic or all in my head. But reading your entries, especially this one, helps me realize that what I feel is not imaginary, but quite normal for a person in my situation. I have felt the anger at my heart, the sadness of not being able to do some of the things I used to, the need to lie down and rest when before I would work ’til I dropped. I, too, am younger (48) and “too healthy” for a heart transplant, and surgery is to be avoided at all costs because of the tumor’s location. More days than not, life is good, but it helped to read that on those not as good days, what I feel is normal for a person living with a heart issue. Thank you for sharing with others. You have made a difference and left an imprint I have no doubt.

    With a grateful heart,
    EM

  13. Christin

    Hello Summer and fellow heart friends. I too caught Radiolab and your story- while I was nearly home from work. The show resonated deeply with me for 10 weeks ago I went through a mitral valve replacement. Infective endocarditis- from a simple dental hygiene appointment. No previous known heart disease or defect. It was shocking. Your story awakened me, turned my heart and soul around; it’s time to face the emotions of the trauma of surgery. For those who have been through the surgery more than once I wonder what that is like. My porcine valve has a limited time of function for me. If I live long enough, another surgery will be necessary. Thank you Summer and all writing here. Bless our hearts!

  14. Hi Summer,

    Driving through the Appalachians today, on the way home to Brooklyn, most stations weren’t coming in. Radiolab crackled in and out, enough for me to catch the gist of your story and this blog address. I’ve been desperate to understand what will happen to me. Like you, I’m a woman in my 30s. I’ve got BAVD (we are the 1%). And I’ll have my valve and ascending aorta replaced at Columbia-Presbyterian in about 8 weeks. Thank you for being so candid about your recovery. The most specific information I’ve been able to squeeze out of my doctors is “you’ll be fine, you’re young.” But I’m scared and I’m grieving the good health I thought I had. And, somehow, even with family and friends rallying around me, I feel very alone. So thank you for sharing.

  15. Patricia

    Summer,found your blog while try to figure out why 8 weeks post op my heart sound is driving me crazy. I also underwent full chest opening for aortic valve replacement and anuresym repair I love your blog because I can relate to so much of it and it helps me to realize what I feel is jus part of the recovery. I say to myself each day…just happy to still be here..this pain shall pass take care

    • Mike G.

      Hi Patricia, I had the same surgery as yours in April 2011, and right afterwards I could feel an uncomfortable pounding in my upper chest which continues to this day. I have done a lot of asking (surgeon, cardiologist, primary care physician, etc) about what could be causing it, but no real answers other than “heightened awareness”. I became unable to sleep due to the pounding along with the rattling of the bed’s headboard. I find it diminishes if I use a wedge to elevate my upper body.

  16. Thanks for sharing your experiences following surgery. I’m about to embark on this life journey as well and I’m so glad I found your blog. I hope that you update soon and that your path of recovery continues.

  17. Mike

    So I can hear/feel my heart beat and I have never had any surgery or been diagnosed cardio problems.
    Have any one else reached out to you with a similar story? I’m 30 at the moment and some time in my mid 20’s I realized when I was sitting still I could listen to my heart beat. I can see it beating by looking at my stomach. I can be sitting at a desk or in my bed and my body shakes enough from my heart beat that it will move the area around me. It’s not crazy loud beating like I get the impression yours is but if its a loose table with a glass of water on it my heart beat moves it enough to keep the water shaking ever so slightly. I’m naturally fitter than most people and have very little body fat on me. It’s not that I work out or train a lot. It’s just how I’ve always been, I’m active enough and just conscious enough about my health that it takes me very little work to stay fit.

    Anyways, I’ve asked a few people about this, my sister who is a pretty inexperienced doctor and my general physician when I went in for my last checkup, and they have never been concerned. I’m still curious about what it is that really might make me this way and wonder if you have gained any insight in to people who can hear their heart beat but don’t know of having any health issues.

    I don’t believe there is anything wrong with me but who knows what other people have discovered and how your story has brought them together.

    Thump thump.

    Mike

  18. Trinity Welch

    Hi there, my name is Trinity I am 13 years old. I have Alopecia Areata and when I read your post on Locks of Love I was very happy to hear about someone contributing to that wonderful organization. Thank you for doing that! ;D

  19. Jill

    I also have a bicuspid aortic valve. Murmer discovered 15 years ago during a routine GYN visit (no kidding!). I started seeing a cardiologist every 2 years, then every year, now I’m at every 6 months. Mod-severe regurg and an ascending aortic aneurysm at 4.2. Thanks for sharing everything! It’s comforting hearing from people who have been through the surgery.

  20. Summer,
    Hello, my name is Betty. I have enjoyed reading your blog. I stumbled upon yours through reading another blog. I’ve had three open hearts surgeries myself due to a congenital heart defect from birth. My first surgery was done at Children’s Hospital in Columbus, Oh. My last two were done at Ohio State University at the Ross Heart Hospital. I LITERALLY JUST started a blog/website called Scars of An Open Heart. It is on WordPress. I was also bullied in school which also left “scars” on my heart. Emotional that is. So needless to say I guess you understand the title. Not only have I had two of my surgeries in the past 10 years; I have also had a partial hysterectomy, gull bladder removal, pacemaker implant, two attempted heart ablations, and one successful heart ablation. My body has been through so much, but I am so thankful to still be here. After my last surgery on December 16, 2013, I have been able to see my son graduate from high school, see my daughter marry the love of her life, and many other life events. I will be celebrating 25 years of marriage with the love of my life in July. I am now in the midst of training a yellow lab that is just over a year and a half old. She has been through three obedience classes; and we both have completed training and graduated from an Assisted Pet Therapy Program. She has yet to become certified, but hopefully this will happen in the Spring. My goal is to take her back up to OSU to help and encourage others that are going through what we’ve been through. I would love to talk with you one day. In the meantime, keep writing, and I’ll do the same. tAKE CARE OF THAT HEART!
    Betty

  21. This website is very interesting to see. article was very interesting to read. I hope the article is posted on this website is useful for readers.

  22. Bruno Pgott

    Summer,

    Love the story. As one who went through open heart surgery 10 years ago to replace a defective mitral valve with an artificial valve, I went through much the same experience you did. Sternum scar, artificial part in my heart,named a weird ‘Timex Watch’ ticking sound every time I’m in a quiet place. At first, it was a bit unsettling, but I have grown to love it.

    Last week I had another heart experience when I had an episode of sudden cardiac ‘death’ at the gym while running. Thanks to being at a good gym that had an AED, great staff, and a med student, they shocked my heart 4 times and 12 minutes and got it started again. By the time the ambulance took me to the ER, they had to shock me a couple more times before my heart stabilized. Luckily, everything worked out and the doctors were able to install a pacemaker/defribulator that will set the electrical pace for my heart. Should keep me in good stead. I’m home and was just listening you on the Radiolab Podcast. I love how you approached your heart issue. I have the same curiosity, but didn’t get photos during the procedure either time. I do have a few in the ER and in the ICU, but they are not as good as yours! Thanks for your blog!

    Bruno Pigott

  23. Catalina Tobar

    Hey!

    I had an atrial septal defect repair 4 years ago. The defect had gone undiagnosed during my childhood despite a murmur, and was finally discovered when my husband (then boyfriend) insisted that i got an echocardiogram during my cardiology rotation; we’re both physicians (from Chile).

    See, it was such a huge hole that it was not possible to correct by an endovascular procedure. In that moment i realized i was not just out of training and a sloth, but in heart failure.

    “Surgery tuesday” they told me on monday, so i didn’t quite have time to realize the magnitude o the surgery.

    Truth is i evolved just fine, without any serious complications, i’m gratefull. However i’m no strager to palpitations or weird sternum sensations while excersicing, since some muscular insertions aren’t where they ought to be. Additionally, it hurts to put pressure over the sternum.

    Scar is not a big deal for me, i’m quite proud of it. Lately i’ve been thinking on tattooing something over it.

    Cheers!

    Catalina.

  24. Joe

    Cheers for you, Catalina!

  25. Just heard your talk on Talk Nerdy with Cara. I’m curious, regarding your heart’s loud noise, are you familiar with V.F. Ramachandran? Some of his work deals with things like phantom limbs and apotemnophilia ($20 word!), basically how the brain compares incoming signals to its map of the body. I don’t know how thoroughly the brain has mapped the aorta and signals coming from it, but maybe that’s relevant to your experience.

  26. I am enjoying your blog very much. So few people understand the magnitude, or even know about, this problem. I too have congenital heart disease. I have had five (yes, 5!) surgeries. My first was an emergency at a local hospital in Oregon 38 years ago. I was then sent to the DeBakey Heart Center in Houston for two operations that were two months apart. My fourth surgery was 12 years ago at Johns Hopkins. At that time they said, because of all the scar tissue, I could probably not get through another surgery. Well, in March of 2015, I had my mitral valve replaced at Hopkins! This ended up being pretty complicated and I Was there for over four months. I am still recovering from that one! When all this started for me there was no internet and it was so hard to get information. I am so happy to see patients getting involved in, and learning about, this condition. I just want to be an example as to the fact that they can have a fulfilling and long life. Thank you and I will continue reading your blog.
    Sandy from Montana

  27. Nick

    Listening to you right now on the nerdist podcast. Count me as one of the 1% you mentioned on this podcast. Have bicuspid valve, well, one is gone, the other one is fused to the first, so just kind of flounders there. About your age as well, a little bit older. Always said, if I need to get the surgery, no big deal…but now I am second guessing it…a whole year? Wow..well, I will deal with it if I have to, but now I am not so cavalier. Glad to hear you laughing and joking about it all.

  28. Michael Rolands

    Just heard your Nerdist interview and have heard your Radiolab in the past. Both touched a nerve for me in a couple of ways. One, as the father of daughters I really enjoy hearing from a woman with a deep curiosity about the world and a love of science. Two, I had a complete aortic dissection in 2011 when I was 45. I needed emergency surgery and my cardiologist was so certain I would die on the table he told me to say goodbye to my wife.When I came out of the medically induced coma two days later my first thought was a confused, “I thought I was supposed to be dead.” I didn’t realize how big a deal my surgery had been until a medical student checking charts looked at mine in the ICU. He got this surprised look on his face and said, “You’re the guy.” “What guy?” I asked. “The guy who lived.” I don’t have a bionic heartbeat but I did have to have the blood supply to my kidneys and legs rerouted. Took me a month of rehab to learn to walk again. Anyway, they tell me I will need aortic arch replacement surgery within the next couple of years so maybe I’ll get that bionic heartbeat after all. Congratulations on your recovery and thanks for being someone I can point to as a positive role model for my daughters.

  29. Cristin Mount, MD

    Hi Summer – I listened to your Nerdist Podcast episode over the last few days and it was wonderful (Because, SCIENCE!!). With respect to what you discussed about your recovery from an incredible surgery – when you said what the CT scan showed, I gasped out loud! All that aside, I wanted to let you know that part of the story resonated with me. I am an ICU doctor and what you described (both your delirium) and what you’ve struggled with through your recovery (regaining strength, depression and PTSD) sounds very much like something called Post Intensive Care Syndrome (PICS). We usually associate PICS with patients who were on a mechanical ventilator for at least 48 hours. I don’t suspect you were, based on your description of your immediate post-op period, most heart surgery patients are extubated quickly after the procedure is done. However, there are a lot of similar features to what you described. So I’m writing to you to let you know that you are NOT alone. Delirium is exceedingly common (about 30% of all patients admitted to a hospital will have at least one episode of delirium). There is a large body of medical literature that supports (or documents) PTSD associated with ICU and hospital stays – interestingly enough, the PTSD is sometimes related to events that happened in the hospital and not necessarily an event or diagnosis that brought a patient to the hospital. It is VERY common in certain subgroups of patients – those who survive septic shock or ARDS for example. What I’d also like to reassure you (maybe) with is the knowledge that the medical community is TERRIBLE at identifying these issues for “survivors” of ICU stays. Us ICU doctors know about PICS (mostly), but there isn’t a ton of research yet into how it happens or how to present it (we have some ideas). And us ICU doctors really don’t follow patients once they leave the unit. Inpatient doctors (hospitalists), cardiologists and even cardiothoracic surgeons aren’t usually well versed in PICS and we certainly have not educated primary care providers (the people who see our ICU survivors more routinely for follow-up) on what to look for. The Society of Critical Care Medicine has an information page on PICS for patients and families. The Vanderbilt run “ICUdelirium.org” website is a fantastic resource for patients who suffered from delirium (the visual hallucinations you described = delirium, even if they were narcotic induced) and a lot of those patients have PTSD. I’m giving a talk on PICS to the Washington State American College of Physicians Chapter meeting in November – the goal of my talk is to educate my Internal Medicine buddies on what PICS is and what to look for (and what questions to ask) when they see patients who have survived an ICU stay (or a MAJOR surgery like yours!!). I’m also actively engaged in clinical research with a goal of how to best follow high-risk ICU survivors to catch PICS and intervene early, if possible to improve quality of life. I would love to use your example in my talk (properly credited) –> haven’t figured out how to reach out to Nerdist with a request to incorporate the recording (assuming I’d need permission from you both as it’s a semi-public forum and my slides will be available on the WA ACP Chapter’s website for physicians who registered for the conference. Even if that’s NOT OK with you or them – I’m happy to answer questions you may have to the best of my ability (you’ll have my email address below) – I’m absolutely not the world’s expert, but this is one of my clinical interests outside of slinging vasopressor agents, placing central lines, teaching residents and such 🙂

    There’s also a Facebook group of > 60,000 women physicians who are moms and they LOVE, LOVE, LOVE talking about how to advocate for and expose their kids to STEM – so there’s a ton of “mama docs” behind your efforts in that arena too 🙂

  30. Sara Castlebury

    Greetings! I just listened to your Nerdist podcast and wanted to thank you for sharing your experience with recovery from open heart surgery. My father is scheduled to have his 4th operation next month; he had 2 valves replaced when I was 6, an internal defibrillator and pacemaker put in when I was 16 and a heart transplant when I was 23. Now their are 2 growths in a chamber of his heart and even though doctors can’t tell what they are, the growths need to come out. At 60+ and having been through this routine several times, he is not looking forward to this day, but he has decided to go through with it.
    But, one thing he has never shared with me is how it really feels to recover from this surgery; after all even though I am almost 40, I am still his ‘little girl’. It was extremely hard listening to you describe it, but I am so glad I now know what he goes through. My dad is one of my best friends and I can now truly appreciate the courage it takes to go through this pain.
    Best wishes and positive thoughts!

  31. jacob

    I just heard you on Nerdist. I had a similar, but different experience 18 years ago I was in a bad car accident and got thrown out of my car going 70 mph, and hurt myself quite badly. The list of injuries where a hairline fracture of my pelvis, hematoma on my liver that almost needed surgery, ruptured carotid artery, and a severe concussion. I have a bionic heart as well. They replaced my carotid artery with a latex one. I carry a card in my wallet with the implant number, just in case there is a problem. A lot of what you described for the recovery was very close to what I dealt with as well. With how severe the accident was for me it took me a good three years to recover to the point where I wasn’t in pain all of the time. I was 18 when the accident happened, and this pre-internet, so their was no support systems online. I ended up 15 years later having to have the stainless steel wires that they use to wrap your sternum together removed. One of them came loose, and was rubbing on the inside of my chest. That is the single weirdest feeling of my life. I went through a whole panic, and stress about was this going to hurt as bad as it did the first time, and if so just shoot me phase. After talking to the surgeon that my recovery wasn’t going to be to bad I agreed to it. I am with you on the pain meds. I would rather be in pain than deal with the side effects of the pain pills. They mess with my head to much that the pain is better for me than the meds.

  32. Dominik Dabrowski

    I’m a 4 year medical student. Your Story Collider talk really gave a great deal of emotional context and made this disorder come to life. It’s nice to have that dimension since we don’t get it in lectures/textbooks.

  33. shannonstirone

    Thank you for sharing your story. It’s rare to hear anyone discuss their health struggles let alone the understandable trauma that comes with those experiences. Thank you for opening the door for those of us who suffer silently with medical PTSD. You are so brave for sharing your story, I know your podcast and this blog will help many others recovering from open heart surgery and trauma.

  34. Dante

    Thank you for writing. I’m currently 41 years old, but I had my surgery 5 years ago. The anniversary is in a couple weeks. I thought I had indigestion for a year, I was falling behind in my runs, I had to take several breaks while hiking, turned out to be a 9.5cm ascending aortic aneurysm. I agree with your assessment on being that age and it being completely different than most peoples experience. As my surgeon said “the good news is because your young, you should heal quicker, bad news is because your younger its probably going to hurt more.” 5 years on, I’m a lot heavier than I was and I’m still limited in what I can do. I cant make as much headway as I like. It is a constant struggle physically and mentally. I’m glad to hear of the advancements they are making, specifically in the bio 3d printing realm. Personally I can’t wait to have this mechanical valve replaced. The increase in volume and depth of the ticking and thumping every time I even think of doing something physically like I once had is debilitating.

  35. Jason Davies

    Hi there, I’m 30 and I’ve been living with a strange case of heart failure for a little over two years now. I went in for a cold and, after a week in a heart specialty hospital no answers. I just am on blood pressure meds that seem to help for some reason. I listened to the nerdist podcast you did and felt a lot of the same things you mentioned. I just didn’t know if I should ever go back to my old life, I’ve lived two different states and worked a lot of jobs trying to find a better fit to my new life. I feel kinda like a time bomb and no real help from the doctor. I wish you only the best and just felt really compelled to email you. Thanks for sharing your story.

  36. Tina opalisky

    I listened to you on The Nerdist the other day. My name is Tina opalisky, I am 50 years old and 5 years ago I had the same proceedure done as you. I wanted to let you know, I too struggle with my noisy heart. It is hard for me to read anymore, because it’s so hard to concentrate. it is hard to find people my age that are going through the same thing. Anyway, you were great to listen to and I just thought I’d reach out. Keep on ticking❤️❤️

  37. Hey Summer – thanks for writing this all down for the rest of us to read and learn from. I just found your blog last week and devoured it. I’m facing OHS in the coming weeks/months and have been blogging my own journey. Here’s my most recent post where I talk a little about reading your blog (and thanks to your blog, I have my own Arty called Pumpy! http://badluckfoot.blogspot.com/2016/11/pumpy-and-a-better-blog.html
    Hope you are doing well! Steve

Thoughts?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s