Elaine Cutri Looks great and so glad you're more comfortable without the closing wires. Once your bone has healed, they probably don't have any function.
2 months post-op
Journal posted on June 26, 2016
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!
Barbara Laurie Mia, how excellent!! ❤️💕❤️ So happy for you, you did work hard to get the treatment you knew would help.. A good example to others.
Emily Rowley That's great to hear you are going well. Was and is your Sternum healed together? Was this a big surgery like OHS since they need to open the chest? Did they ... Read more
Emily Rowley That's great to hear you are going well. Was and is your Sternum healed together? Was this a big surgery like OHS since they need to open the chest? Did they place plates in? And how did your Surgeon come to removing your wires? Sorry I have so many questions as my Surgeon has breily discussed this with me due to Sternum did not heal after 1st OHS with gap amdnow cracks alot after 2nd OHS (I just read you had 2x OHS as well), so I had a CT Scan today. Wishing you well along your recovery, you have been through alot hun 💕
Ron Broadhead Best to you Mia. Hope all continues to improve.
Petey Bello Glad you are doing well & out of pain! The best to you as you continue to heal!
On the road to recovery (again)
Journal posted on May 18, 2016
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.
Rodrigo Ponce You can only get better because the hardest part is now behind you. Just don't give up because you don't know how to give up, if you did you wouldn't be on ... Read more
Rodrigo Ponce You can only get better because the hardest part is now behind you. Just don't give up because you don't know how to give up, if you did you wouldn't be on your way to recovery.
Pain sucks, I know, and I also know you want it to go away right now, but this is the kind of pain that will get you through. I'm not telling you to like it, but rather accept it for the time being for what it is: the thing that will help you get through. It won't be what will get you through, you should keep that in mind.
Sending you a huge bear hug ☺
Hello everyone! Three days since my sternal wire removal.
Kate Watson Wow so they didn't have to open you up fully to get them out? That is crazy that you had to deal with that but hope you feel much relief after you're all healed.
Finally Over!
Journal posted on April 27, 2016
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.
David Alejandro Good for you Mia; Jesus bless you with a prompt recovery!
Denise Campbell One of my pacer wires that they left is poking me Feels like a needle inside. I thought skin grows around it and it would stop? I'm 6 weeks post op. Thoughts?
Surgery Scheduled
Journal posted on March 25, 2016
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.
Rodrigo Ponce Now you know that you'll have the wires removed, and that's great!!!
Remember to stay positive, and what I mean by that is that keep the faith that you'll ... Read more
Rodrigo Ponce Now you know that you'll have the wires removed, and that's great!!!
Remember to stay positive, and what I mean by that is that keep the faith that you'll have your surgery the 12th next month because that's the only thing that matters right now. Every other thought should go out the window, except if it's not one where you can see yourself in recovery after a successful surgery.
Do see yourself in recovery after a successful surgery. Close your eyes and imagine what it will be like for you to have all those wires removed, experience the relief that you'll feel, how great you're going to feel: No more pain, just comfort and relief. Your life will only sky rocket, once again, after this surgery. Girl. we won't see you in the sky after this because you're going to be in the moon enjoying the view.
See it, then do it. That's my motto.
I'm so happy for you!!! :D
Barbara Laurie Mia, that's amazing! Stanford is a great hospital, I hope your outcome will find you recovering with less and less pain each day! you're a fighter! So glad ... Read more
Barbara Laurie Mia, that's amazing! Stanford is a great hospital, I hope your outcome will find you recovering with less and less pain each day! you're a fighter! So glad you didn't give up❤️ Best wishes for a wonderful summer ahead💕
Update-My heart is set on it
Journal posted on March 24, 2016
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.
Rodrigo Ponce Best of luck tomorrow, and while we're at it, some huge bear hugs along your way too!!!
Kate Watson It never occurred to me that the wires could break over time! Can I ask how that happens? I read your story, wow you've been through a lot already. I'm wishing ... Read more
Kate Watson It never occurred to me that the wires could break over time! Can I ask how that happens? I read your story, wow you've been through a lot already. I'm wishing you the best, and agree to fight for removing them because you know your body the best. Please keep us posted.
Sternal Wire Pain
Journal posted on March 20, 2016
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
Rodrigo Ponce You know your body, and if you feel that's what you have to do then that's what you should do.
I'd get a second, and even a third opinion, just so that you ... Read more
Rodrigo Ponce You know your body, and if you feel that's what you have to do then that's what you should do.
I'd get a second, and even a third opinion, just so that you can tell your doctors that there is at least one medical opinion that concurs with you gut-based opinion (and the gut is rarely wrong)
In the unfortunate event that your doctors are reluctant to remove the wires, then you should consider changing doctors. I know you may not want to do that, but I also know that you shouldn't have to live in pain and with pain, and for me that's on top of everything else.
Never forget that if you've gotten this far in life, you can deal and you can figure out everything else. :D
Rodrigo Ponce You know your body, and if you feel that's what you have to do then that's what you should do.
I'd get a second, and even a third opinion, just so that you ... Read more
Rodrigo Ponce You know your body, and if you feel that's what you have to do then that's what you should do.
I'd get a second, and even a third opinion, just so that you can tell your doctors that there is at least one medical opinion that concurs with you gut-based opinion (and the gut is rarely wrong)
In the unfortunate event that your doctors are reluctant to remove the wires, then you should consider changing doctors. I know you may not want to do that, but I also know that you shouldn't have to live in pain and with pain, and for me that's on top of everything else.
Never forget that if you've gotten this far in life, you can deal and you can figure out everything else. :D
Gail Magnus My surgeon told me if my wires bothered me a year from now to let him know. He said there's an outpatient procedure to remove them. I say try to get it done / fight for it!
Lilly Black Mia, this is incredible! I agree with Rodrigo, get a second/third opinion. My first surgery was at Stanford as well. And Dr. Liang was great. Dr. Miller operated ... Read more
Lilly Black Mia, this is incredible! I agree with Rodrigo, get a second/third opinion. My first surgery was at Stanford as well. And Dr. Liang was great. Dr. Miller operated on me to repair the aneurysm in 2007. I did not go back to Stanford for my second surgery, because when I was 63 yrs old I didn't want a mechanical valve, and they were trying to talk me into it. I refused, and I went else where. I'm so happy because I met Dr. Sharo Raissi, and he was excellent! I never felt better! I would absolutely get another opinion. I used to think it was wires that were hurting me, but I also believe that being cut open twice probably has damaged some nerves as well. I'm feeling better and better as time goes on. I wish you the best, and I am so sorry you are suffering with this sternum pain!
Updates and a Small Request
Journal posted on July 6, 2015
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.
Tammy Pilcher Praying for your friend, Maya, and you too. God bless!
Terrie Syvertsen Mia-First thing this morning prayers for your friend and for yourself as well. I hope you get some of the answers as to what direction you are moving as it ... Read more
Terrie Syvertsen Mia-First thing this morning prayers for your friend and for yourself as well. I hope you get some of the answers as to what direction you are moving as it has to be tough not being able to move forward. I hope the information you need comes soon and leads to a healing path for life.
Lewis Garlisi Maya, having choices always keeps life interesting. Yours is difficult, and I'm sure you will weigh all of your options and make the correct one. Praying for you and your friend.
Cheryl Batzing Praying for you and your friend Maya! Let us know how things are going.
Bob M I pray that your friend will finally be rid of leukemia. And I pray that your path for heart health will be lightened and peaceful.
Thankful for friends
Journal posted on July 1, 2015
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 :)
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.
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.
Tammy Pilcher Maya, I was wondering if your doctor said what caused the sternal wire to fracture. Or, was it always like that? Thanks, Tammy
Mia Smith Hi Tammy,
No one is actually sure what caused the wire to fracture. I went to Costco a few months ago, came home and ate dinner, and then it suddenly just started ... Read more
Mia Smith Hi Tammy,
No one is actually sure what caused the wire to fracture. I went to Costco a few months ago, came home and ate dinner, and then it suddenly just started hurting tremendously. My doctors reviewed an older CT scan from about a year ago, and it was in tact. However, I'm an assistant to a cardiologist and he said that the wire on the very bottom of the sternum (the one that broke for me) is always the first to break. My guess is that it was just starting to wear and I moved wrong and it just snapped. Also, I had the procedure done a few years ago when I was just barely 16 and I've grown a bit since then (I'm 20 now).
Tammy Pilcher Thank you so much for the information, Maya! I was just wondering, because I think I feel my bottom wire when I try to lay on my right side. It isn't really ... Read more
Tammy Pilcher Thank you so much for the information, Maya! I was just wondering, because I think I feel my bottom wire when I try to lay on my right side. It isn't really painful, just strange. I'm hoping it will eventually not feel that way, but as long as it doesn't get worse I can live with it. But it is good to know if something happens to it they can take it out. Thanks again and I hope everything else works out for the best for you. I'll keep you in my prayers. God bless you!
Lora Lee Peterson Wow you are amazing!! I read your story and your strength and will to keep on is an inspiration to me! I'm going to pray for you to get this all straightened ... Read more
Lora Lee Peterson Wow you are amazing!! I read your story and your strength and will to keep on is an inspiration to me! I'm going to pray for you to get this all straightened out once and for all. You deserve some peace for your heart !! God bless you my dear!!
Lewis Garlisi Mia, your story continues to be so interesting - and educational. Glad they were able to remove the sternal wire without problems. Who would have thought ... Read more
Lewis Garlisi Mia, your story continues to be so interesting - and educational. Glad they were able to remove the sternal wire without problems. Who would have thought they would break? Wishing you the best dealing with the myocardial bridging issue.
Bob M I pray that all of your uncertainty and pain is all behind you. God bless and rise up!
Lewis Garlisi I see "Mia", but I guess it's Maya? Anyway, best wishes.
Mia Smith Hello everyone thank you for the comments and best wishes! I appreciate all the prayers. Yes, this is what all heart survivors have around their sternum :) ... Read more
Mia Smith Hello everyone thank you for the comments and best wishes! I appreciate all the prayers. Yes, this is what all heart survivors have around their sternum :)
And yes, it is Maya. During high school, I spelled it Mia. I haven't been able to figure out how to change my name on here yet.
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
Tammy Pilcher Thanks so much for this post, Maya! Very good information. So glad they got that wire out! Prayers and best wishes for you!
Mia Smith Hi Tammy-Thank you for the response. I appreciate the prayers :)
Pain continues, but we're getting there
Journal posted on May 9, 2015
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
Lewis Garlisi Hello Mia. Yours is quite a story and your upbeat attitude is refreshing. I hope your doctors can figure out a solution to your sternal pain soon. Best wishes.
Rodrigo Ponce If you've proven anything is that you're much too strong for life. After reading your story that much is clear to me.
Rodrigo Ponce If you've proven anything is that you're much too strong for life. After reading your story that much is clear to me.
I can only imagine how difficult it must be for you. But eventually your doctors will figure out what it is, but you have got to hang in there.
It's OK to lose hope, and faith, and strength too. You are much to strong but you're still human. And when that time comes, if it ever comes, someone will be there to give you a little bit of hope, to renew your faith in yourself and that you can lean on when you're feeling weak.
Steven A Husted they will eventually figure it out i know my cousin had trouble with his wire and they had to open him up again and reset the wire and he made out alright after that
Fractured Sternal Wire and Sternal Pain
Journal posted on April 1, 2015
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?
Terry Shermeister Hi Maya! Just read your story and let me say you're an inspiring women. Thanks so much for your honesty and positive energy that you possess. After reading ... Read more
Terry Shermeister Hi Maya! Just read your story and let me say you're an inspiring women. Thanks so much for your honesty and positive energy that you possess. After reading about you I felt much stronger and less fearful. Please know my thoughts and prayers are with you!!
Mia Smith Thank you so much Terry! That means a lot to me. I appreciate the thoughts and prayers!
Terry Shermeister You are so welcome. Keep up the great attitude. I know that it's stressful and there are ups and downs. Take care.
Here we go again...
Journal posted on May 3, 2014
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!
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
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.
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
My my the nutrionalist is so much more helpful..she took a look at my blood and indeed could tell i have an infection..whereas the dr was cluless about. I also have something wrong with my eyes and my pupils arent dialating correctly..ive had it all my life but its gotten worse and they arent even responding to light anymore and my visions been so much worse since the surgeries.
Have a procedure next saturday but itll be one without antestesia and no cutting and itll help to train my blood cells to look out for the bacteria thats in my blood and destroy them. right now the parasites are hiding in my cells and the dang immune system cant detect them. Just one cathader in the vein and some UV light and i should be set to go. It might make me feel worse before better at first, and its whats been happening, but i have been improving and i hope to conitnue to do just that. one more day before break-lets just pray i can make it through the school day tomorrow.
Speaking of prayers thank you for those of you that have-I appreciate it much. I'm not a religious person but i do believe in miracles and belief in prayer-i was even visited by my own angel in the hospital before my surgery :) It was so cool!
Things seem to be way better than they have been in the past, i truly believe i've gotten through the worse although there is more headed my way. I've just been very emotional and stressed out-even broke down today at school over something very small, but feeling much better
Todays been another difficult day. The doctor yesturday was no help whatsoever, seeing as how she was not my regular doctor. decided to ignore what she sugested because she told me to take medicine for something thats not even the issue. It's getting ridiculous. So going to call the my surgeon and hopefully get an appointment with him. He should hopefully be able to help and tell if theres an infection. I DO NOT want to do another scope. I've been put under antestisia 3 times this year and its caused enough complications.
As for school today, it went pretty well. My computer teacher was really proud of my project and I was able to talk to him about really cool personal stuff. Hes a great caring guy. He gives me the motivation I need to pursue my goals for the future-i really want to be a movie director.
Having some issues with old friends who left me after my surgery. Shes causing all sorts of bad problems and has just gone off the deep end and is threatening my friends and i. Not too worried about it but considering talking to the counselor at school. Its sad you can go from best friends to complete enemies. I guess having all the complications with my heart surgery showed me who really cared about me-I've had three 'friends' leave and the true friends stayed and have picked me up off my feet continually.
Things are improving I suppose. Just plugging along every day ad trying my hardest to do the best i can in my classes. grades As-Cs make me pretty happy considering what i've gone through and still am.
Yeaup, thats right. Have an appointment today with my local primary care. Hopefully she can help-going to see what she thinks about the pains and fever instead of just rushing up to my hospital first.
Obviously i didnt go to school today, ive been sleeping all morning and just recieved a wake up call from my father-have to leave in 20 mins. Wish me luck!
Well to tell the truth its 2:45 now. I've been having just horrible problems sleeping lately..maybe its from the pains or just a combination of everything. Im pretty exhausted even at the moment but I cant seem to fall back into a deep sleep..i feel very restless. woke up burning(could be the fever) so i got up and got a glass of water and am blasting my fan.
I calculated the time since my heart surgery- 8 months, 21 days. Cannot believe its been that long. It's been roughly 3 months, 14 days since my gall bladder surgery. So 6 months between surgeries. Im a fast healer but maybe not as fast as I thought i'd be. Is anyone this far into the healing process still having problems?
As for helping me sleep, ive been trying to take something for that. But seeing as how much drugs I got pumped up with, i'm trying to stay away from that. My liver got a mild case of cirrhosis from all the pain meds I was on and I want to have it improve, not worsen. So i've been taking mid nite when i need it. It's helped a little but ive still been tossing and turning. This whole process from last year of trying to figure out why i was so sick to where i am today has been so extremely frustrating. Thankfully in the long run im a heck of a lot better. But Im still missing school and still having problems.
Hopefully I can get back to sleep..having a lot on your mind does not help either. We shall see how I feel in the morning to if I go to school tomorrow or not. Id rather not be cooped up inside the house, but if i'm this tired when i get up and the pains are back there is no way im functioning tomorrow.
It's been a very long day, so excuse me for most likely messing up my speech here.
Woke up this morning with all of my joints extremely sore and the joyful stabbing side pain again. Thankfully, due to my stretches and massages and such lately my chest hasnt been bothering me all of that much-But, the dreaded gallbladder infection pains have spiked up even more. It's been three months since the gallbaldder surgery and im convinced its just not healing right-something is wrong. Having yet another surgery so close after the heart surgery was probably a big mistake-at least I can eat now, but i have a constant pain that feels like a knife thats been heated in a fire is stabbing me. It seems like its just getting worse. I've been taking the nutrition i need, and using hotpads(without those i do not know how i would survive) but still its this irrating agonizing thing.
My emotions have been very up and down lately. I feel over the worst of it, but still I've been crying a lot again. I can feel my body trying to push the toxins out, i almost constnatly have a fever. when I went to the nutrionalist a couple weeks ago i had a temp of 101.9..and i hardly even noticed it. Today i deffiently felt that i had a temp.. I went to school anyway though. I'm determined to graduate on time.
Also, i've been feeling just very...alone lately. It's great to have this website and that I have others to relate to but i also feel alone in a different way..I have not yet found others that are near my age. I guess it doesnt matter, but makes me feel very alone..
Well the Nutrionalist I have gone to and the massages are deffinetly helping, but today im having horrible pains where they took out my gallbladder-3 months since that surgery. I've been using hotpads and taking certain enzymes which have been helping, but I'm just extremely frustrated again. It's hard to even think about school when I've got this going on. I have no motivation to even do the work.
I've been a lot happier, dont feel near as depressed. But I have been lonely-learning to just deal with that as well. I've only got a few really close friends anymore, which is all you need I guess but its still complicated and hard.
Every day its just something else, though this week was a lot better than last. Last week I only was able to go to school for about one and a half days..I've been completely exhausted all the time as my bodies stil trying to heal. I just wish it would already >_<
Thankfully the nutrionalist did give us answers we needed. I found out more answers being there for only two hours then I have from the doctors from the past year. That thought infuriates me still.
As for my heart, all seems to be doing well. Just having slight discomfort from the scar tissue, but i'm working through it.
Thanks to everyone who so quickly replied to my last blogpost. Words don't describe how thankful I am for it. I also realized that I didnt really say how old I was-I'm 16, a junior in high school. Though through all of what I've been through I really dont feel that young.
Today for the most part was a much better day. School was stressful and about my third class I was having agonizing pains-I left the class three times to just walk around and get some water. A lot of the pain though I was receiving was from my Endometriosis. Still, even if it doesnt have to do with my heart, it's frustrating.
I will probably sit down with my mother tonight and talk to her about the massage therapist. It sounds like a really good idea. I've been going to a chiropractor off and on, and hes way helpful when I can go, but hes a two hour drive away. I've tried other chiropractors around town and none of them use the same techniques as he does.
I found a "brain wave" program that has helped. Shortly after my surgery I went through the program (for free because we knew someone who was training for it). It helped tremendously. The tones and chimes that were played to me litterally opened up my brain. And the scans would show when I had serious tramas, and the tones would help my brain work through it. Well, I've recently discovered CDs that are pretty much the same thing. I bought one without really realizing what it was and have listened to it for the past few days. It helps your mind open back up, and that also may be why I'm so emotional as well. Working through things is a lot better than blocking it.
Hopefully it will continue to improve though. I realize there are up and down days, but this past month has been very painful.
Today has been another difficult day. It's been over 6 months, yet im still having days where the pain is unbearable. My school has called because I havent been going frequently, and theyre complaining about it. Sometimes things just seem too over the top and frustrating, especially when no one understands you. Last friday I left school early because I had such a bad migraine and chest pains. Most of the teachers gave me looks as if to say, "yeah sure, you totally know what pain is." I hate that they think im lying just to get out of school, because I'm not. I've just been over the top angry about the pain, angry about not healing fast enough, and angry that no one understands. I keep telling myself everyone heals at a different rate, and Just a couple weeks ago when I went in for my check up my cardiologist said my heart looked better than he expected it would. Still, I feel very alone in all of this. Even my best friends dont know what to say anymore..and i've just learned to shut my mouth about the pains most of the time. I'm tired of sounding like a broken record and although I moved past that huge stage of depression from all of the meds and surgery re-lapse, I feel as if a part of its come back just because i'm so irritated about things. I feel like I need help, but I dont know where to go or what to do.
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