Mia's Journal

Hello everyone-I hope you are doing well! I wanted to let everyone know that I've certainly improved since having the wires removed. It's been so strange getting used to breathing without significant pain-something I've experienced my whole life! I'm still healing and my body keeps telling me to slow down and take naps; however, I am slowly regaining my energy. I'm feeling very hopeful that this will be my last surgery on the chest-I've been told that if my valve needs a repair they should be able to fix it through a catheter. I truly do not think I can go through another ohs-not to scare anyone at all, my second ohs was just a very rough experience! If anyone is experiencing sharp stabbing pains or discomfort around the sternum, please talk to your doctor. It was a bit of an ordeal going through the process to get these removed; however, I am so thankful for it. I truly did not realize just how much those darn little things were impacting me all my life. I'll keep you updated as I progress, but right now things are looking up! My echo last week was good and so far my arrhythmias are the same as they've always been so no need to get on any beta-blockers. I still can't run without having severe oxygen issues, but that's because of my myocardial bridge. I know that heart valves have different life spans but I'm really hoping mine keeps ticking for a long time!

It's been three weeks since I've had my sternal wires taken out. Besides the tired, sore process I'm going through I'm still feeling relieved the wire pain is gone. However, mornings are really rough right now and I find it extremely difficult to make it to work on time. My chest muscles are very tense and sore. Does anyone have any suggestions? The incision is still healing, but I was prescribed lidocaine cream that I am considering taking again since it's almost healed. I'm also drinking a lot of chamomile to keep my nervous system relaxed and I've brought my pain meds down to just ibuprofen. I went up to Stanford pain management today and they would like me to start acupuncture-only problem is, their acupuncturist isn't available with my schedule. So I'll be on the hunt for someone else in the meantime. Thanks for the support-I know its just a phase, but any type of relief while I'm going through this stage will help.

Hello all- I finally had my surgery yesterday to remove the sternal wires (after being delayed from a very nasty sinus and ear infection). It's currently 4:30 am in the hospital and I can't sleep but I can say that despite the swelling and pain in my chest, the stabbing from the wires is completely gone! I seriously almost cried yesterday from the relief after suffering from these things for so many years. I'll keep everyone updated as I progress-as I said I am in a lot of pain and staying over night but should be released later today. I had a wonderful experience yesterday in the hospital that I've never had before: Shortly after my procedure, I was told that it was pet therapy day and I was welcome to go down and spend some time with the dogs. It was such a relaxing time to sit and pet these kind, loving, empathetic animals. I mainly sat with a labradoodle name Scotch who proceeded to lick my hands and snuggle next to me for practically the whole hour. It was a real blessing to have this experience right out of surgery and a nice distraction from the pain.

My surgery is scheduled for the 12th next month!! -granted that there's no emergency surgeries that pushes mine back, of course. I'm beyond relieved but there is still a part of me holding my breath that they'll cancel it on me. I have to meet with the surgeon (who is the same surgeon who removed one wire last year) to discuss the problem make it clear that I want ALL wires removed. I received a question regarding how/why the wires break. Both situations for me so far have been random-last year, I leaned over my coffee table while eating dinner and felt a "pop" and a sharp piercing pain. This time, I woke up with my usual chronic pain-but it became quickly apparent that it wasn't going away and is pretty much the exact same pain as last time just in a different location. I believe my situation is rare-most people can keep the wires inside of them and its not a problem. However, I've always had issues with the wires-stabbing pain, itching.. Both last year and now are just severely escalated pain.

Thank you for the kind words and suggestions everyone. The pain is steadily increasing-I believe I may have done something to break another wire. I spoke with my nurse today at Stanford and tomorrow they are going to discuss my case at a board meeting with how to proceed. I made it very clear to her that I believe based on it being almost the exact same pain as last year (just in a different location) that we need to remove all of the wires. I will let everyone know what happens tomorrow. I'm truly hoping this doesn't turn into a hassle-but I'm prepared to fight for it if need be. I would rather not have to go anywhere else either, but I'm not going to suffer for several months like I did last time.

Hello everyone. It's been some time since I've last updated. Overall I've been doing well; however, I wanted to know if anyone was experiencing a similar situation that I am now.. As some of you may know, last year I had a broken sternal wire at the bottom of the sternum that was causing 15/10 pain. It was an extreme ordeal to get it removed and I really had to fight with my doctors in order to have the procedure done. However, after 3 months I won the battle and had the surgery done-which did get rid of the pain. Here's my dillemma-I still have 7 other wires that cause constant chronic pain-especially at the top. When this happened last year, I tried to get them to remove the others.. but they wouldn't hear of it and I had to settle with just removing the broken one. The pain has gotten worse again, especially tonight and I'm not sure where to go with it. I want them out of me-I know they're what's causing the problem, but I'm not sure who to go to because even though I truly appreciate and trust my doctors, I feel as if they won't remove them. I'm just feeling sort of lost in this situation and I'm not sure what to do... Thanks ahead of time everyone, even if you don't have any suggestions. It helps to know I'm not alone in the fight. With light and love; stay strong fellow heart warriors Maya

Received a call today to schedule a stress test, although I am not sure why since I had one not too long ago. I'm still waiting to hear back from my cardiologist, but I know she's super busy. It could be for the myocardial bridging issue, but I'm not sure. Honestly, stress tests are the worst for me since I can't run very well due to the lack of oxygen problem. I get very dizzy, chest pains, and feel like I can't breath. I'm sure I will receive a call tomorrow to get some answers as far as what direction were moving next in. I've been debating my situation carefully. I really don't want to have open heart surgery again (for a 3rd time), but it could also mean a life where I can run and actually exercise. However, the risks may be too big. We will see. Just a tip to all of my heart brothers and sisters-please make sure you keep your teeth well taken care of! Life gets crazy, but unhappy teeth can make for an unhappy heart. I had a crown break on me today and had to have it fixed-the tooth was abscessed. Not a fun day! However, it's better than the bacteria deteriorating my heart valve. One last note- I would really appreciate some prayers, love, and good energy for a friend of mine. We grew up together and he was battling leukemia all through high school. I just got news that it's returned after 3 years. He seriously needs some love and I'm not able to return to my home town to do so myself in person. Thank you everyone. Maya

I wanted to drop a little note here and thank everyone for the comments on my journal. I do read each one although I'm not so great at replying. It's nice to know there are others out there going through similar situations and that we can all relate to one another and help each other out. A small update-I'm still doing pretty well, however I think my body is trying to tell me to slow down a little and rest-you're still healing! There is some pain still and I know it should feel worse, but compared to my 10/10 miserable pain I was having, it's hardly noticeable. Thank you everyone for reading :) Maya

Hello everyone, On Friday I had my post-op follow-up and they said everything looks great. Everyone in the clinic was so relieved that the major pain was gone. I did briefly discuss the myocardial bridging issue with one of the doctors, and she's going to relay the information back to my cardiologist. I should be receiving a call from my cardiologist soon on if this is something her and I want to thoroughly discuss in person. I am feeling so much better after the surgery-the glue came off today and it looks better than I thought it would. Yesterday I even went out and threw a ball around a little, although today I was pretty sore from not using my chest muscles much for the last 3 months. I've been able to return to my regular schedule at work after taking it easy the first couple of days back. I'm still getting tired pretty easily, but its way better than it was. Now that I've recovering, besides the myocardial bridging issue, I am also going to go back in and work with the doctors for the chronic pain I've always had along my scar. The trigger point injections really helped, but they weren't enough to last. Hope everyone else is doing well. Maya

Today was an easier day with moving around the house. I've actually been able to get up and walk around on my own. However, my sleep pattern has been all over the place due to the pain and the medication. I'm hoping to be able to return to work on Monday, even if just for a few hours. I would like to be cooped up in the house as little as possible. Also, I want to return to work and resume a little bit of normal life. I'm supposed to go in for a check-up with my cardiologist next week either Wednesday or Friday. We're going to check the surgical site, and then discuss the whole myocardial bridging issue a little more. I'll continue to keep everyone updated.

Thank you everyone for your comments on my journal; I'm sorry I've been away for a while its been a long journey the last few months. Yesterday I finally had surgery to remove the broken wire! It was a fast procedure, and they didn't even need to intubate me-so no throat pain thankfully, just light sedation. I was even able to go home last night even though the doctor had ordered an overnight at the hospital for me. I'm on some pain killers, and my chest is pretty sore. Its a similar pain to the open heart surgery that I had a few years ago, but not nearly as intense. And the best news; there's no more stabbing or nerve pain, just the after-surgery soreness from the incision! I am so thankful for my team of doctors and everyone who has been here to support me-family, friends, and co-workers. I'm really looking forward to how I will feel after I heal up. I will try to keep everyone updated here :) On another topic, I have also learned that I have what is called myocardial bridging. This is where one of my coronary arteries briefly goes into the myocardium (muscle of the heart), and then back out. This can cause pressure on the artery, causing less blood flow and oxygen. This all explains my problems that I have had continually my whole life with exercising. Also, one of my doctors is pretty sure that this is the cause of my asthma symptoms, since inhalers have never helped. So as soon as I heal up, we are going to explore the option of how to proceed in that category. Best of luck to everyone out there, and thank you again for the support, Maya

Hello everyone! Just an update on what's been happening the last month: I'm still continually having sternal chest pain. I've been working with my doctors on it, but we have to go through the standard 'ruling out'. For right now I'm using some pain cream to numb the area, which does help. However, my classes have been really taking a huge blow by this. I'm pretty positive I'm going to have to take a short break on college while this gets all sorted out. I have an echo shortly to check the heart, although I still believe that it's something going on with my sternum or the wires. However, from the X-ray that was taken, it doesn't appear as if any wires are poking me: one is just fractured. I hope we get this figured out soon. Keep staying positive everyone! Maya

Has anyone experienced sternal pain several years after their operation(s)? It has been four years since my last open heart surgery. Last week, I started to receive extremely painful chest pain out of no where, originating in the manubrium (top) and body (middle) of the sternum. I had an x-ray done that does show one fractured sternal wire, but my doctors do not think that is the cause of the pain, as the wire is at the bottom of the sternum. For right now, the doctors have me on an anti-inflammatory, and I have been icing the area on and off. I have been in an out of Stanford and my primary care. I know I'm in good hands at we will get to the bottom of it, but in the mean time its extremely frustrating. I haven't been able to work and am concerned as classes start back up next week. I was just wondering if anyone else had been experiencing anything similar? Keep staying positive! Maya

Supraventricular tachycardia. After two weeks of wearing the Ziopatch and then sending it in, this was the diagnosis. After posting in December, I started to have a few issues once more. Dizziness, palpatations... I just wanted to make sure that nothing had returned after moving down from high altitude. It sounds like I've had this for a while, and the high altitude in Colorado could have really been making it worse. Accounting for my black out spells and more. The good news: it's pretty minimal, at least right now. Once my heart beat starts going out of control, my body is able to put it back to normal pretty fast. Because of this, no meds and no procedures. Not so good news?: We have to monitor it. I've been told to call 911 right away if I start having an episode where my heart won't go back to normal beats. If anything like this happens, then meds and or pacemaker it will be for me. I'm super relieved to know at least some of what has been happening to me. It doesn't surprise me too much that I have picked up this disease since I was born with such a major defect. Still, after just turning 19 this past week, it wasn't the best of news. I haven't done anything on YouTube like I said I would. I keep really wanting to but life gets in the way: full time student, part time waitress, and dealing with fun medical ordeals. I hope this post doesn't seem too negative to you guys, I just needed to rant once more. Believe me I am super relieved to have answers, but kind of bummed out. You think by now id be used to the fact that my heart and body just isn't normal. Thank you all as always for taking the time to read and share on my page :) I love you all! Keep staying positive! -Maya

Just as an update to everyone, I moved out to California to re-coop from the altitude sickness I was having. Indeed, it was the altitude. I finally got tested for oxygen levels out in Colorado, and while I was sleeping they got down to the 60%'s. Move out to California, get the same test done, guess the lowest percentage rate? 94%! I'm so happy I could leap for joy! I'm not going to let this journal just sit here, for I am still recovering and will continue to update as I go along. I find myself still having some pains and struggles here and there, but the pressure, dizziness, constant pain..it's all gone! So I have a curious question for everyone..When did you end up finding adam picks book? It was the only thing to truly help me, because I couldn't find any other help/guidance from people who have experienced this. Why Do I ask? Because I'm in the process of creating a video for my Youtube account-it's going up on monday. I just wanted some videos about my own experience in hopes to help others (I mentioned Adam's book in it-unfortunately for me I didn't find it until after I had gone through the surgery and was home). Do you think this is a good idea? I'll put the link up on Monday when I post. Thanks again everyone- Your heart is beautiful, No matter the experience You are a survivor -Mia

It seems as if my whole life has been wrapped up into this constant health issue. Being born with pulmonary atresia, it seems like I've never lived a normal life. My doctors said I would never walk, or would become a "special needs" kid as I grew older. I certainly proved them wrong. Sure, I've always been a bit of a slow learner, and have to be very minimal when it comes to running/exercising, but I'm way stronger than any of them ever thought I would become. Still, years down the road-18 that is, and I'm still struggling. It feels as if my health is controlling large parts of my life, and I hate it. And although doctors can be helpful, lately I feel as if they can't find whatevers wrong with you unless your bleeding right in front of them. Looking back, it took them several months to figure out what was going on with me in 2010/2011, and the doctor at the ER I had been staying at wanted me to wait 3 more months before my heart surgery... Let's just say I emotionally exploded because I knew I wouldn't last that long and after another call, I had the surgery done a week and a half later. After the surgery itself, the doctor did state that I wouldn't have made it through the surgery if I had waited any longer.... Like I said, helpful, but also infuriating. Doctors are supposed to be there because they want to help people, but I feel like after most of the schooling they go through, the wanting to help just doesn't stick with most-not all, but most. It seems hard to find a good doctor these days. And right now I keep getting bumped from doctor to doctor. Where was I? Oh yea, health controlling our lives. I know this is a similar feeling for most of us, especially those on here. Although we are all of different ages, we are or have all experiences similar things. It's frightening, madening, and downright depressing at times. But you have to find the will to move on, like I've been trying to. Shortly after my second open heart surgery I really went down hill with my emotions. I became very distant from everyone, was super depressed, and was having hyperventilating/anxiety attacks. Thankfully, I got over all of that. But recently, since I have gotten sick again, the depression has come back. It comes and goes every day or so. If I'm not using my oxygen then i get dizzy spells, headaches, and terrible nausea. Besides this, I'm constantly having chest pains whether I take the oxygen or not. This seriously makes me want to just crawl in some corner and sleep until I can finally wake up without any pain-even if it takes years. Fact is, most-if not all-of us have gone through this. Our hearts are connected to our emotions, just as much if not more than our brains. It really truly effects us. And if you don't find the will to be happy and push on, then things can crumble into a huge mess. And even though I'm once again facing all of this, I know that things are going to get better, even though I just move need to move to a lower altitude and start anew; away from everything I grew up from. It will be scary, but i will be with family, and it will be an adventure. Today's entry was really just a rant..I seriously needed to get some stuff out there and had these thoughts all on my mind. Otherwise, sleep just wasn't going to come to me tonight. If anyone took the time to read this, then props to you! If not, then I for one feel better because I at least ranted my heart and soul out and don't have any more of it on me anymore. Goodnight everyone.

Hello everyone! I hope all is going well. It's been 2 and a half years since my pulmonary valve replacement. I've been pushing through, but the chest pains have never really gone away. That is, until I go to sea level (California) and they magically disappear. Recently, I have acquired some very painful constant headaches, and a dizziness that never leaves. My balance/cordination is off, I can't fully intake as much air as I need (least it feels like Im not), I constantly have a pressure on my chest followed by heart palpitations every so often, and I'm honestly exhausted all of the time. This all goes away when I travel to a lower altitude-question is, why? I have lived in Colorado at 7,400 feet my whole life. Although I have always had the chest pressure and pains since my first open heart surgery at two years old, I've never had this dizziness and constant feeling terrible. It doesn't make any sense to me, and none of the doctors have any answers. When I am at high altitude, I have symptoms of sleep apnea-waking up in the middle of the night gasping for air, but it is gone in California. The ER doctor put me on oxygen here, but it's not a lifestyle I would like to stick with. I am planning on moving to California in a couple of months because there aren't really any other options. It's seriously frustrating. The ER doctor thought maybe I have sleep apnea and/or pulmonary hypertension, but the pulmonologist he sent me to actually said, "I do not understand why you are here. what can i do?" and my cardiologist here refuses to even think there is something like that going on. Maybe it is just altitude sickness, but it does not make sense to me that all of this has suddenly spiked up in the last few months. Any thoughts?

It\'s been about 19 months since my open heart surgery last year. Things have been doing great for the most part, but these last two weeks i\'ve been having terrible pains in my lower sternum area. Went to the chiropractor, and he thinks I might have a Hiatal Hernia. I have an appointment with my cardiologist on monday for a checkup, and am going to have him take an x-ray to make sure nothing is wrong with the wire in my sternum, but has anyone else heard of getting a Hiatal Hernia after open heart surgery?? One of the main causes is because of incisions, and I have a lot of scar tissue due to all of the surgeries I have had. I\'m just really concerned about this..it is my senior year of high school and this is the last thing I want to be worrying about right now. The main way for the doctors to \'test\' is through another laproscopic surgery, and that is not happening. Help?? Thanks much.

Hey Guys, I know I haven\'t been updating my journal for a while, but as far as the health category goes ive been a lot better. Except for my immune system-I\'ve been catching colds a lot more frequently. Even right now as im typing im coughing and such. I\'ve been taking my vitamins so its not really that..Dont know-thinking bout going back to the nutrionalist and seeing if theres anything I need to do for it. Excited for summer coming up-having a friend come out for a month and were going back to the wolf reserve together and stuff. Moving again, though a pain in the butt it\'ll be alot better in the long run. My uncle will be the one thats renting the place out to us. Next month is my birthday :D Gonna be 17! Pretty excited-going to disneyland. Last year was one of the toughest years of my life, but its deffinetly been improving. I have been slightly lonely lately; trying to make new friends who i can trust is hard. One of my best friends has recently discovered he has some heart problems-hoping that he wont have to have surgery and hes having monthly checkups.

It has been officially one year today since my open heart surgery! :) I am doing so much better, and am happy to actually be worrying on things teenage girls are supposed to be worrying about instead of constant health problems. There are still small problems here and there and my immune system is still not the greatest but compared to where i was a year ago I feel amazing