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Sore sternum 1 year after OHS

  • 1.  Sore sternum 1 year after OHS

    Posted 02-03-2020 22:25
    Hi everyone, I had open heart surgery (ASD Primum patch) exactly one year ago on February 8. Does anyone else have experience with a sore sternum at this point? I feel like I still can't lie on my side without it aching. In general, it feels very "heavy." Does this ever go away???? 🙏🏼🙏🏼❤️❤️

    ------------------------------
    Jill Farfan
    architect
    Lexington KY
    ------------------------------


  • 2.  RE: Sore sternum 1 year after OHS

    Posted 02-04-2020 09:48
    Hello Jill, 

    I fractured my sternum at 8 weeks and now at 6 months it is
    very sore, my surgeon will be doing a CAT in April to see
    how the healing is going, but yes, the muscles and tissues in the complete sternum are in much pain. I hope you have notified your
    surgeon about this.  Mine says he may have to do outpatient surgery to shore up my sternum with a plate





  • 3.  RE: Sore sternum 1 year after OHS

    Posted 02-04-2020 13:32
    Hello Jill and Mary,
    I had my heart surgery on 24 March 2015. My sternum took over a year to feel anywhere near normal. To this day I still have some tender spots. The sternum is not bone and it takes longer to heal. Plus the wires they leave in there all have to have scar tissue grow around them too and nerve endings are regrowing and all that put together equals, a pain in the chest! ☺ Don't let it freak you out if your healing time is longer than someone else. Some folks had more work done than others, but it does get better. with time.
    Take care 
    Richard Short 
    Chapter 395





  • 4.  RE: Sore sternum 1 year after OHS

    Posted 02-04-2020 15:27
    Thank you, Richard and Mary!
    Your input helps more than you can possibly know. I love this forum. Mary, please keep us posted. Take good care ♥️




  • 5.  RE: Sore sternum 1 year after OHS

    Posted 02-04-2020 16:02
    Thank you so much Richard
    for a while everytime it hurt I would freak out thinking I was having a heart attack and now I can feel the wires close under the skin and realize this is where the pain is, that it is not a heart attack but nerve and muscle pain.  My doctor says if and when the wires poke through the skin he will take steps to repair the sternum

    M





  • 6.  RE: Sore sternum 1 year after OHS

    Posted 02-05-2020 03:00
    Hi Mary,
    I too can feel the wires just under my skin. And, I too would freak out thinking I was having another heart attack at times. In fact, I was just in the ER over the weekend with chest pain but only to discover that I did in fact have heartburn! Boy, they do feel very similar, don’t they?? It gave me a lot of peace of mind to see my heart performing very well while I was on the monitors again. There’s a lot of truth in that saying “keep calm and carry-on!” Eh? 😊♥️ Take care ☮️ 🙏🏼




  • 7.  RE: Sore sternum 1 year after OHS

    Posted 02-04-2020 15:57
    Its been 7 years since my open heart surgery; so i don't remember this particular symptom.  If you are uncomfortable about this, you could always call your doctor.  Perhaps there is an medical issue.
    in general it can take 1-2 years before you feel comfy in the "new" you.

    ------------------------------
    Marilyn Rosenhouse
    Dallas TX
    (214) 850-0219
    ------------------------------



  • 8.  RE: Sore sternum 1 year after OHS

    Posted 02-05-2020 02:46
    Mary,
    I’m so sorry to hear that you fractured your sternum at eight weeks! Did you fall or was it in cardiac rehab? It is such a long healing process and I can imagine it must be frustrating to have this complication. Please do take good care of yourself. ♥️




  • 9.  RE: Sore sternum 1 year after OHS

    Posted 02-05-2020 10:28
    Hello Jill, 
    The cause itself is unknown, I had 2 OHS surgeries back to back (one on Wednesday and one on Thursday) where the sternum was opened and then closed up again which may have compromised the sternum itself, and then when doing cardiac rehab after release from the nursing home is when I really noticed it.  

    I had a CAT in November when the clicking and popping really
    bothered me, and now that I am on a 5 pound weight limit the popping and crackling has stopped unless I do too much in one
    day.  The clicking and grinding and popping did not hurt, it just scared the heck out of me, the pain is in the muscles and connecting tissues surrounding the sternum, and feels like the pain one would have after going to the gym and lifting weights

    I have been reading all the letters in our Forum, and just would like to say that my Surgeon told me it is not the patients fault in any way if there are complications or setbacks during recovery from OHS.  Everyone of us is different and has different healing capacities and healing times.  

    When I told my Doctor that it was probably my fault for trying to get outside and feed my animals too fast, he told me to stop that kind of thinking.  He said during his Residency days a long time ago, Heart patients stayed in bed too long and were almost crippled by a surgery like OHS but that thinking has changed now, exercise and an early out of bed is normal now and accepted by the Medical Association.

    Communication with The Patients Surgical Team seems to be the best way to discuss and solve many problems, and of course this Forum where I myself have found alot of info 

    Thank you







  • 10.  RE: Sore sternum 1 year after OHS

    Posted 02-04-2020 16:54
    Dear Jill,
         Wow you brought back memories!
    I am 62 years old, active, healthy and have had three open heart surgeries- one in 1969, 1972,and 1976
    It was for an aortic stenosis.
          Any way, after my first open heart, I was nine years old. In '69, I could swear the surgeons opened my chest with A Sears saws-all, and the scar is about one inch wide. (how far cardiac surgery has come)! When I was moved into a room after a few days in the ICU, I could swear there were at least TWO elephants sitting on my chest, and it hurt a LOT to breath.
         Open heart surgery is a life-changing event. AS you know the sternum is an incredible bone mass and having it torn in two...OUCH !!!
    So, to helpfully give you some solace, yes it does feel like a heart attack, but its the sternum literally knitting itself back together and it takes time.
    After a year it still was tender, and it was hard to find a comfortable way to sleep. So I found, for myself, propped up on pillows and reclining back seemed to help.
          A very funny thing is that when I see an x-ray of my chest, there is a wire, about 7 inches long, twisted around both halves of the sternum.
    Like in '69 the surgeon said, "Hand me a coat hanger, please." And it is the same thickness of a coat hanger two, twisted, with two halves imbedded
    in the bone! LOL!!!!
         So my friend, take "heart." The body is an incredible, wonderful living machine, and it asks you to be patient while it heals. And I hope you do not have a coat hanger in there!
    IN PEACE
    Ken levine
    Middlebury, Vermont

    ------------------------------
    ken levine
    volunteer, retired
    802-236-8186
    kenpaullevine@gmail.com
    Middlebury, Vermont
    05753
    United States of America
    ------------------------------



  • 11.  RE: Sore sternum 1 year after OHS

    Posted 02-05-2020 03:11
    Dear Ken,
    Thank you so much for your response! It is so reassuring to hear that you are doing healthy and well after three open heart surgeries years ago! That must’ve been so frightening at such a young age. All of my experience this past year confirms that the human spirit is strong and vibrant. The body is an amazing machine to house that spirit. OHS has come along way over the years. I don’t have a coat hanger (😅) but I do have seven little wires very close to my skin that I can feel upon touch. Patience sure is key during this process. Thank you again for sharing your experiences. It helps so much! Peace and blessings to you and all!! ♥️




  • 12.  RE: Sore sternum 1 year after OHS

    Posted 02-04-2020 18:01
    Hello All:  I had my triple by pass on March 26, 2019.  I still have some issues with soreness in my chest area.  What I am more concerned with is that when they took my veins/arteries from my leg and arm they told me that I had too small of veins and I needed to be on a dilation medication for the rest of my life.  I am not worried about taking the medication, but I am again experiencing shortness of breathe.  I can't tell if its due to me having had the flu/cold and my asthma or if something is wrong with the surgery for the heart.  I have an upcoming appointment so hopefully will get some answers.  When I go to the cardiologist, the first thing he says is "lose ten pounds and you will feel better".  I am certainly trying to lose the weight, it doesn't come off like it did when I was 20.  I am now 61.  Praying for all of you as we are a special group of people.  We are all here for a reason after much soul searching, I am truly believing that.  I had so many questions, "why am I still here", why was I spared?  I know now that its God's will and if I truly believe and listen to his word I will find the answers that I seek.

    ------------------------------
    LINDA GRAMZ
    MELBOURNE FL
    ------------------------------



  • 13.  RE: Sore sternum 1 year after OHS

    Posted 02-04-2020 19:05
    Sorry to hear you are having shortness of breath.
    Please let us know what your doctor tells you after your
    visit.

    After my surgery, my doctor told me my bronchial plate was
    damaged during the surgery and it will take some time before I
    can breathe like I used to. First he said by Christmas I should be
    all better, now he says a year which will be in August.  And yes, losing weight will help me too, since my surgery I have gained 12 pounds, and it was all during thanksgiving and Christmas...And every bit of it tasted Heavenly







  • 14.  RE: Sore sternum 1 year after OHS

    Posted 02-04-2020 20:42
    Hi Jill,
    I will be nine months post op on Feb 15th and still have a tender sternum. Some days it is a little more tender than others. On those days I like to limit my exercise. As far as lying on my side, I still have some nights where the ache will wake me up. I also have the "heavy" feeling as well. I recently talked with one of the nurses at my rehab and she said this is all normal and may even take a year and a half to heal.
    I hope this helps you in knowing you are not alone with these feelings. Congratulations and Happy ❤️ Anniversary!
    Best of luck to you as you continue to heal!
    Michelle


    ------------------------------
    michelle leverett
    Ridgecrest CA
    ------------------------------



  • 15.  RE: Sore sternum 1 year after OHS

    Posted 02-05-2020 02:53
    Hi Michelle,
    Thank you for your response. I do appreciate it and it helps a lot! How I love my cardiac rehab nurses. They have told me the same about it taking a year and a half to truly heal. (I suppose I was hoping for more at the one year anniversary. 😊) Patience is key. We are just three months difference so please keep us posted on your recovery as well. Peace and blessings! ♥️




  • 16.  RE: Sore sternum 1 year after OHS

    Posted 02-05-2020 20:36
    I am 21 months out from triple by-pass and I still have issues from time to time with my sternum. I can't say it hurts but its such a strange feeling its hard to describe. I have figured out that if I lift too much during the day it bothers me at night. I have spoke with others who have had OHS and some have the same issue and others do not. Guess we are the chosen ones.

    ------------------------------
    Curtis Conley
    Retired
    Dale IN
    ------------------------------



  • 17.  RE: Sore sternum 1 year after OHS

    Posted 02-05-2020 21:58
    Thank you Curtis, it does seem that more and more members are coming forth to report sternum issues





  • 18.  RE: Sore sternum 1 year after OHS

    Posted 02-06-2020 16:36

    Hi Curtis. I'm 12 months out from OHS. My surgery was emergent so of course my scar is a bit ragged. I also feel pain in my sternum. Especially if I sleep on my left side too long. Do you feel the wires in your sternum? I also have a lipoma right above my xyphoid process. 

    I've had no one to share with so you might get sick of me!
    Thank you
    Margo



    ------------------------------
    Margo Floyd
    ------------------------------



  • 19.  RE: Sore sternum 1 year after OHS

    Posted 02-06-2020 16:57
    Hi Margo, I don;t think we will get sick of you...We are all recovering in different stages and I for one, love reading how you all are doing..

    Today is my 6 month anniversary of my OHS and I dreamed I could not breathe, it seemed so real that i woke up and went to my storeroom and got my oxygen that I haven't used since October...

    I wonder if the PTSD of OHS ever fully goes away.





  • 20.  RE: Sore sternum 1 year after OHS

    Posted 02-06-2020 17:37
    Hello Mary and thank you. You know, I've never thought about what I've been through resulting in PTSD...... but you are right! At least in my experience. I often feel such a sense of loss. I am a positive person, but hey, some stuff just kicks your butt. I look forward to getting to know folks. You really don't know what it's like until you've been there.  Thanks again.

    ------------------------------
    Margo Floyd
    ------------------------------



  • 21.  RE: Sore sternum 1 year after OHS

    Posted 02-06-2020 18:48
    If I am to be honest, that sense of loss you feel is what I feel most days and I think its the fact of mortality and the loss of just being able to wake up and going through your day instead of being on watch for a heart attack or a bad dream or an upcoming appointment that has to be attended to, new medications and their side effects, thoughts about " Have I taken care of all My Business and Family in case I die overnight?" and then the thoughts of " What have I done with my life?" and how much more time will I get?....

    I did google PTSD and OHS about 5 months ago and yes, it is a real thing...Instead of letting it bother me more then I want it to, I do meditation and gentle yoga and read motivational books and articles and paint, read and write.  

    And every morning when that first sunlight hits my eyes, I face the sun and give Thanks for the start of another day

    M





  • 22.  RE: Sore sternum 1 year after OHS

    Posted 02-07-2020 03:57
    Mary and Margo,

    How true it is that we experience a heightened sense of our own mortality after having survived what we all have survived.  In truth, though, we are aware that we still are undergoing the process of survival on a daily basis and, to that extent, we do not experience what has happened to us as truly being in the past.

    I know that I never assume that I will be alive tomorrow and, while I make plans just like everyone else, it is with the awareness that death sits over our left shoulder.  This is not a bad or negative thing at all, though, because along with that awareness comes a heightened awareness if the warmth of the sun on our daces as it shines through the bedroom window on a cold winter's day, or the sound of the wind rustling the leaves as we walk in late Spring, or the sound of a hoot owl on an early morning walk.

    We are alive and we know it.  We are conscious of it and what a gift we have been given, every day and every moment.  We are aware, and it is the most wonderful thing in the world.

    And we are so lucky to have had the opportunity to meet and become friends with the wonderful people in this board, our sisters and brothers.

    Thank you for being here and sharing.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 23.  RE: Sore sternum 1 year after OHS

    Posted 02-07-2020 10:43
    Thank you Ira for your message

    My Hospital had a speaker come in during rehab in November, and he and I talked about some of the same things we are talking of now pertaining to increased awareness of what worked for us in our lives prior to OHS and what has changed post OHS. 
     
    The group mostly just listened as I recounted how I hoarded less then healthy feelings my entire life, holding on to grudges and sad situations far too long to ever be healthy for me.

    I told the group that now since my OHS, I have a chance to live with a softer heart filled with less clutter and regrets and am learning how to let things go, how to mind my own business, and how to forgive and forget before the little corners of my New Heart become cluttered with dust and debris.

    When anger or irritation does strike, I immediately ask myself, 
    " is This Healthy behavior or old unhealthy behavior?" and if honest can see how 50 years of living one way will certainly not change easily but that awareness of our emotions and feelings is the first step to New Heart Health...

    Have a wonderful day





  • 24.  RE: Sore sternum 1 year after OHS

    Posted 02-08-2020 17:26
    WOW! Is it GREAT to read that you all are responding to each other as a supportive group! It does my heart good! (no pun intended-well, alright, pun intended!)

         As  some may know, I am a child survivor of three OH for aortic stenosis, starting in 1969,my first surgery when I was 11. Yes, yes, dinosaurs were extinct by then, BUT the fact that I received not one ioda of counseling, forums like this fantastic one here, caused me PTSD, depression, Panic attacks, and suicidal thoughts. 
          Back then the idea of "after care" was, "Buck up, its over, get on with your life son." And the only "counseling "my Mom, Dad and I got was,
    'well your chances of survival is 50/50."
          I am now a pretty healthy, active 63, and the last valve I received in 1976, that finally worked, has kept me going for 42 years.
          When I was hospitalized for panic disorder in 2018, a social worker noted, "Wow, three open heart surgeries, you getting counseling for this trauma." I broke down and cried and cried. Finally!

         Okay, I learned not to be afraid of my body, learned coping mechanisms 
    for panic attacks, and got centered, unafraid of life, and began to slowly slowly accept it all.
          Including death, which is a good thing to share. I am of course still in recovery, and one writer states the trauma and PTSD is forever, but with a much more positive outlook. That is so important, and so I am a BIG advocate of support, counseling, any continual talk, especially before, during and after cardiac procedures.
    Love 
    Ken





  • 25.  RE: Sore sternum 1 year after OHS

    Posted 02-09-2020 00:55
    Ken, 
    I wish I could meet you in person and just give you a big heartfelt Hug...and then another one for this note you wrote to us here at the Forum

    You said the things I feel and had no words for since I had my OHS.  Thank you for putting those feelings into words so I can chew on them , digest them, and savor them for myself.

    I don't mind being in Recovery, from the surgery or the PTSD, It is hard, but so important and wonderful to find out what we are made of and capable of emotionally and physically and spiritually.

    Again Ken, Thank you so very very much

    M







  • 26.  RE: Sore sternum 1 year after OHS

    Posted 02-09-2020 01:02
    Hello Ira, 

    I love what you say about We are Alive and We Know it. 
    I had 2 OHS back to back because my lungs filled with
    blood and the surgical team had to open me back up again
    the next day and I was in Intensive Care for over a week then.
    And then after 3 weeks I was put in a nursing home until I could get my bearings and be able to go home.

    I still remember the nightmares and screams in the night
    that no one else heard, The winged creatures that no one 
    else could see, the sounds that the nurses could not turn off because they could not hear them

    Now with 6 months of Recovery behind me, or alongside me, 
    I am conscious of the gift I have been given and just wanted
    to write and thank you so much for your wonderful words to us

    M







  • 27.  RE: Sore sternum 1 year after OHS

    Posted 02-09-2020 12:10

    Hi Ken,
    I just read your message and you had me in tears! I love hearing your sentiments that all of us have felt to some degree or another! Processing and letting go is so important. The support I have found from this forum... from ALL OF YOU... has helped more than any doctor, cardiac rehab nurse or even family member (as much as I love them all!!). Just being able to relate to and share stories makes such a difference! 

    Mary, was it you who mentioned the winged demons in the ICU room and the sound that only you could hear??? Boy!!!! I sure can relate to that!!! Crazy stuff!!! For me it was mouthless strangers dressed in black at the foot of my bed and not being able to breathe while being ignored by the nurses (apparently all of this was in my head according to everyone else).  Absolutely no one could relate to that in my world until now. Thank you. Thank you. Thank you. 

    ♥️



    ------------------------------
    Jill Farfan
    architect
    Lexington KY
    ------------------------------



  • 28.  RE: Sore sternum 1 year after OHS

    Posted 02-09-2020 12:53
    Okay.  Since we're talking about winged demons and mouthless strangers and such, my entire two week post-surgery medically induced coma, and my next "conscious" week in the ICU, was one hallucinatory experience after another.  I won't bore you with the details but they ran the gamut from being in a hospital in the Bahamas and intervening with the Governor General of the Bahamas (there is no such thing, at least not in the last two centuries) on behalf of the hospital administrator who told me we once were shipmate, to being blessed by Jesus Christ (I am a Jewish Zen Buddhist), to convincing my teenage daughter not to accompany me to the men's room because it was a portal to heaven and she was to young to die, to being transported from the nursing station back to ICU via a conveyor belt attached to the ceiling, to believing that I could use my hospital bracelet to connect to a hospital wireless network and text my family, to thinking that one of the nurses actually was the admissions officer at one of my daughter's college choices and telling her that I would be delighted to teach poetry there as a part time adjunct (this was the day before I was discharged).

    There was much more and, once I left the hospital for the rehab facility, I started researching ICU delusions and hallucinations, and questioning my wife and daughter about which I my very vivid memories were real and which ones never happened.  I never did have any negative experiences during these hallucinations, and the only thing that was at all distressing was that I knew I was unable to get up and walk around.

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 29.  RE: Sore sternum 1 year after OHS

    Posted 02-15-2020 01:01
    Medically induced comas often cause bizarre dreams: especially when cimbibed with morphine for pain. I was in a medically Induced come for 10 days 7 years ago and these “dreams” are still vivid today. When i was awakened and could finally talk, the nurses explained that having these powerful dreams was not unusual. For example, i dreamed that Mother Teresa, my mother in law and my mom were volunteering in the hospital nursery taking care of sick babies ( this “ was in a heart hospital ”) . I dreamt That my husband i were the official photographers for English Prince and Princess touring the USA.
    My big mental problem is that my thoughts would wander so much and I couldn’t sleep.
    Recovery especially if you had complications, is full of various symptons.
    You dont just get up off the tabke and ho back t your usual work habits. If you have tine before the surgery, i suggest you aje arrangements for taking off several weeks from your work

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655




  • 30.  RE: Sore sternum 1 year after OHS

    Posted 02-15-2020 09:59
    Marilyn and Ira, Thank you so much for your stories...

    Frightening and puzzling and also very very 
    interesting to read about.  After sharing my experiences
    here I have also started drawing those that I remember

    Again, thank you

    M





  • 31.  RE: Sore sternum 1 year after OHS

    Posted 02-15-2020 10:29
    Mary,

    There's actually an internet forum dedicated to post-OHS and ICU delusions and hallucinations.  I discovered it when I finally got home aster my surgery a couple of years ago.  Unfortunately, I don't recall where it was located, but you probably could find it through a google search.  It was very interesting.

    I was particularly surprised that nearly everyone on the forum described negative or frightening experiences, but my experiences were mostly neutral and non-threatening, although I was also mostly a helpless observer throughout.  I attribute the helplessness to the fact that, although I was otherwise not in my right mind, I did know that I was a patient in a hospital setting at all times and recovering from a heart attack and bypass surgery.

    By the way, there is a DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) psychiatric diagnosis for this condition.  I would think that most hospitals should have a psychiatric social worker, clinical psychologist or psychiatrist on staff affiliated with their coronary care program to proactively investigate and support their OHS patients with respect to this condition, especially since it is quite common among older patients.  Unfortunately, my hospital did not and I was left to my own devices sorting out my experiences after the fact.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 32.  RE: Sore sternum 1 year after OHS

    Posted 02-15-2020 15:55
    Thank you so much Ira....I am googling for it now...If
    I do find it I will let you know the web address...

    M





  • 33.  RE: Sore sternum 1 year after OHS

    Posted 02-15-2020 16:04





  • 34.  RE: Sore sternum 1 year after OHS

    Posted 02-15-2020 16:42
    Mary,

    I've done a lot of thinking about post-OHS delusions and hallucinations, including now, two years post-surgery.  What particularly amazes me is that they seemed so real, nothing at all like normal dreams or even nightmares.  When I'm dreaming, I'm always conscious, on some level, that I'm dreaming and certainly that's the case when I awake.  I assume that this is the case for most, if not all, people.

    The hallucinations/delusions. however, were of a completely different magnitude.  They felt as real as any normal waking experience.  I remember, after I was transferred to the rehab hospital, discussing my recent medical history with the staff cardiologist there.  At one point in the conversation, I asked him if my records reflect my earlier surgery related to some heart issue.  He told me that the records don't reflect any earlier surgery.  I then called my wife to ask her about it and she told me that I never had any earlier heart surgery in the 30 years that she had known me.  At that point, I realized that this event had never happened and it had just been a delusion.

    I then began a process of deconstructing a number of questionable "memories" to determine whether they really happened.  In some cases, they were a complete fiction.  In other cases, events actually did happen but were significantly different that the way I remembered them.  For example, I thought that my cardiologist at the hospital where I had my surgery actually was a police officer that helped me.  We both got a laugh out of that one when I visited his office after my release and told him the story.

    On a deeper level, I've begun questioning the nature of experience generally, including what we consider our past.  How much of what we believe is carved in stone prior history actually is only our flawed memory of past events, or colored by some personal bias or point of view.  I recommend discussing some past events with someone who shared them with you many years ago.  You may find that your recollection of events is quite different than that of your friend.  If we are doing this all the time, over the course of decades, then how much of what we believe to be our personal histories is an accurate reflection of reality?  And if we're influenced in the present by what we believe to be our prior histories, then how much of what we do now, or how we perceive others or ourselves now, is based on a fiction?  It is as though our awareness is filtered through the gauze of a belief architecture that we've constructed, sort of like Marley's ghost carrying around the chains that he forged in life in Dickens' "A Christmas Carol."

    Well, I've probably waxed too philosophical here, but I'm happy to share this anyway.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 35.  RE: Sore sternum 1 year after OHS

    Posted 02-15-2020 19:00
    Ira, 

    Neuroscience and psychology is my field of love and study...

    I have never had an ICU stay before, most of my surgeries were just normal surgery, knee replacements, appendix, tonsils and the like, and did not have external pain medications after the initial surgeries were completed

    This OHS was totally different.
    I read the info in many of the links I clicked on
    and read many times that the hallucinations are exactly like what dementia patients experience on a daily basis.

    I cannot imagine living like that on a daily basis.  The Brain is a wonderful thing, but once it turns on its host, life can be less then fulfilling or joyful.

    My husband tells me the Surgeon told my family that with the Fentanyl that was used, many people report delusions and the Surgical team was not worried about long term damage.  By the time I left the Nursing Home after almost 8 weeks after surgery, I was getting my sea legs back, but I still remember what a long strange trip those 8 weeks were...

    M






  • 36.  RE: Sore sternum 1 year after OHS

    Posted 02-15-2020 21:02
         Consequences from being on a heart lung machine, induced trauma, fentanyl,  etc. Can have profound effects years after. It not necessarily bad, but it certainly happens.
          40 years after my last of two previous OHs I still have dreams of those surgeries.  The body heals nicely but I think the brain is STILL trying to make some sort of sense--like its saying, "shut the front door, WHAT happened again?!"
          Pretty normal, but for me, and I ask others, I have days when I feel either especially spiritual, or feeling like "am I still here? I AM alive right?
          After 60 years, I am certainly used to it, but a lot of times it can get very confusing and leave me wondering and yeah sad.
    Ken


    Sent from my Verizon, Samsung Galaxy smartphone





  • 37.  RE: Sore sternum 1 year after OHS

    Posted 02-15-2020 23:42
    I talked to my sister tonight, and she told me she knew of the delusions that were probable after OHS but never told me or my husband of her findings.  She was afraid to tell me what she found before I had the OHS because I may not have had the surgery then.  

    She sent me the link to where she found the info back in May of 2019 and I am including it here.


    I told her we can't do anything now about my prior surgery but if I have to have another ICU visit or OHS to tell my surgeon of the delusions and hallucinations I did have so the surgical team can keep an eye on that  ....

    I am absolutely amazed that this is not common knowledge for us going into surgery ...

    I am just posting a small part of what I found from the linked page that I included here for you

    ________________________

    Depending on methodology, post-cardiac surgery delirium is diagnosed in 26%–52% of patients, with some studies reporting percentages as high as 70% With aging of populations worldwide and an increasing number of cardiac operations performed yearly, post-cardiac surgery delirium is a major epidemiologic and clinical problem. The consequences of delirium are long-lived and include increased mortality and morbidity, long-term cognitive dysfunction and memory loss, increased risk of falls, and decreased functional status. It is also important to identify risk factors, including exercise capacity prior to the operation, as postoperative delirium after cardiac surgery may be associated with poor exercise tolerance.

    The pathophysiology of delirium is not fully elucidated, but a common pathway lies in neuroinflammation. This distressing syndrome can be regarded as a marker of cerebral decompensation in response to physiologic stressors such as organ failure, inflammation, infection, or drug effect. The use of cardiopulmonary bypass (CPB) in cardiac surgery leads to systemic inflammation with endothelial dysfunction and blood–brain barrier disruption causing neuroinflammation and activation of microglial cells. Only identification of patients at risk of developing delirium and its timely detection can reduce the impact of acute brain dysfunction and allow targeted interventions. A recent systematic review listed 11 strong risk factors including age, type of surgery, preoperative history of cognitive decline, previous psychiatric conditions, preoperative cerebrovascular disease, perioperative use of risperidone, postoperative oxygen saturation, mechanical ventilation time, blood product transfusion, occurrence of postoperative atrial fibrillation, and renal insufficiency

    M







  • 38.  RE: Sore sternum 1 year after OHS

    Posted 02-16-2020 08:25
    This is amazing information, Mary.  I hadn't come upon this before.  I intend to share it with my cardiologist, as he and I have talked and he has agreed to assist me in gaining access to the powers that be at the hospital where I had my surgery, for the purpose of letting me assist its heart patients in some peer group capacity.  The hospital does not currently have a Mended Hearts visitor program and I intend to explore that possibility as well.

    I will keep everyone posted as things develop over time.

    All the best,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 39.  RE: Sore sternum 1 year after OHS

    Posted 02-16-2020 11:13
    I was blown away when my sister sent me this link she found last summer...And I was humbled because in my family I am the GoTo Guy for brain info and never found it...

    So I asked her, "knowing this info, how do you and the other family members even know if I am in reality from day to day even 6 months after the surgery....?"

    She said  "We don't, so we humor you alot by agreeing to what
    you say now. "  

    That to me is the saddest part of her and my conversation

    M





  • 40.  RE: Sore sternum 1 year after OHS

    Posted 02-16-2020 11:53
    Mary,

    That's a riot.  My family has known that I'm out of my mind since I was a kid.  Now that my parents are both dead, my wife and daughter both know it.  My mother, though, as she lay dying, told me that all these things about life that I had told her in the past and that she thought crazy at the time, she now realized were true.  That actually gave me great comfort because the types of things I had been discussing with her related to our connection to and oneness with the universe and I knew that, if she was recognizing this, then she would be able to accept her impending death with equanimity.

    My brother and I both are the GoToGuys for brain info in my family, my brother more with respect to mathematics and the physical sciences (he's a physicist) and me with respect to the social sciences, literature and philosophy.

    After I was released from my medically induced coma and had conducted my own research into my condition at the time, I learned from my brother that he had conducted the very same research while I was in the coma, and had learned that my survival odds were only 50/50.  I let him know that I was eternally grateful that he had kept that information to himself and had not shared it with my wife and daughter at the time.  I also laughed because I knew that he and I both have the same exact response in such moments; we hit the books and learn what we need.

    Have a great day,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 41.  RE: Sore sternum 1 year after OHS

    Posted 02-19-2020 17:01
    Mary, the same can be said of me.
    No one in my my family ever ever knew what to make of me after my very first surgery in 1969
    But having talked with my counselor today, she mentioned that my mom and dad also had no real information about the after effects of surgery , and kinda hoped o had figured it out on my own, at 11 years old.

    So my frequent quirks and behavior went unspoken.  I would make campfires in the back yard, chanting indigenous songs, called myself otter, carried what back then was my "medicine" bag and became a loner of the family.

    I am in Florida now visiting my 91 year old mom, (nice to get a break from Vermont winter.
    So I love taking long walks among the beach, searching for private places there and watching the little and big events of nature.
    And speaking with her, it appears I will never be understood,  but that is okay.
    I wish to find a way to get yo know me better.
    I am working on that.
    Ken

    ------------------------------
    ken levine
    volunteer, retired
    802-236-8186
    kenpaullevine@gmail.com
    Middlebury, Vermont
    05753
    United States of America
    ------------------------------



  • 42.  RE: Sore sternum 1 year after OHS

    Posted 02-16-2020 11:18
    Ira/Mary,

    I’m glad this conversation is ongoing and I thank you both for openly sharing this information. I agree with Ira about them feeling sooo real. This was my experience as well. The characters were part of my visual setting. They were in the ICU room with me... just as much as the nurses.

    The medical information you shared Mary is also very interesting. My conclusion to what you shared is that they don’t really know what it means and could be attributed to a number of different things. What I’m unclear about is if this is for heart patients only or for any patient having received general anesthesia. This is an important difference.

    I appreciate the philosophical outlook, Ira. I do believe we create our own reality, every single one of us. This reality is based on our thoughts. Most all of us are sloppy thinkers indeed, myself included. Although I try to neutralize my thoughts with meditation.

    By the way, the heavy chest feeling was most likely due to acid reflux. I thinkIt may be caused from the beta blocker I still take, Metoprolol. I also may have a mild ulcer. The doctor took a biopsy last week during my endoscopy and I will find out more next week.

    Take good care everyone,
    Jill




  • 43.  RE: Sore sternum 1 year after OHS

    Posted 02-16-2020 12:07
    Jill,

    From what I've read, these delusions and hallucinations can occur with any major surgery, not just heart surgery, particularly if there is an ICU stat.  In fact, it's frequently characterized as "ICU delusions or delirium.". They think it may have something to do with the constant sounds of ICU monitoring devices and the lack if any normal day to day structure of life while an ICU patient.  It's at least part of the reason that they try to get you out of the ICU as soon as possible.  I also read that the likelihood of experiencing this delirium increases with age and, interestingly, if you were drinking any alcohol during the week prior to surgery.

    I know what you mean about mediation.  I have been observing my thoughts in meditation for over 35 years.

    Good luck with your biopsy, and please keep us posted.

    All the best,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 44.  RE: Sore sternum 1 year after OHS

    Posted 02-16-2020 16:19
    Hi Ira and Jill

    After I posted here last night, I went further into my study of dementia and hallucinations where it concerns the Alzheimer patients or Dementia patients, and some of the info says that those of us who have had OHS delusions may now understand how the thinking of the Alzheimer patient is compromised on a daily basis.  I was thinking if they could actually get to the root of the problem with the neuroinflammation of the OHS patient when the bypass machine is used for the heart surgery, perhaps they could move forward with Alzheimer research.

    The use of cardiopulmonary bypass (CPB) in cardiac surgery leads to systemic inflammation with endothelial dysfunction and blood–brain barrier disruption causing neuroinflammation and activation of microglial cells. Only identification of patients at risk of developing delirium and its timely detection can reduce the impact of acute brain dysfunction and allow targeted interventions. 

      We live in the most forward thinking times now, and are lucky to have the internet and Medical journals to look this info up.  





  • 45.  RE: Sore sternum 1 year after OHS

    Posted 02-16-2020 17:12
    Mary,

    My father died at 92, having been diagnosed with Alzheimer's three years earlier.  Although what I am about to say may be a bit off-topic for a heart forum, my impressions of his delusions is that, if the caregiver doesn't get upset by the delusion and can relate to the Alzheimer's patient by accepting or not disputing the delusion or characterizing it as a delusion, then the patient may not feel as distressed.  I view this through the lens of my own Zen and similar experience over the last half of my life during which I have recognized how our belief systems act as filters to our experience of moment to moment reality and limit our view of reality in an illusory way.

    If so-called normal caregivers are themselves subject to a limited illusory view of what is real, then why should that view be seen as somehow more valid than the perhaps delusional thinking of the Alzheimer's patient or, for that matter, the schizophrenic.  While an undergraduate, I also attended a group psychotherapy training school and one of my teachers, a psychologist with a very active practice, told me that he dealt with schizophrenic delusions, not by challenging the delusions because they didn't fit the conventional view of reality, but by questioning the patients about why they were upset by what they thought they were experiencing.  The reasoning was that if, for example, you were no longer unhappy that Martians were attacking you from the street lights, then maybe you would no longer have a need for that hallucination/delusion.  Food for thought.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 46.  RE: Sore sternum 1 year after OHS

    Posted 02-16-2020 21:00
    Hello Ira

    I have no problem with getting a bit off the path of Heart Surgery, and read your note with a nodding head in agreement with what you posted..

    Thank you so much for replying.  I love food for thought

    M





  • 47.  RE: Sore sternum 1 year after OHS

    Posted 02-16-2020 16:15
        Ira, please keep me informed of your success with becoming a mentor in the hospital. I am a hospice volunteer, but dream of being with children, especially, to give them hope and so they can ask their own questions. I have a history of working wit children three and up to 12, as an educator and childhood teacher. Children are so aware ! 
         And to Mary and everyone else, that incredible information speaks volumes as to, basically who I am today, at 63. I am healthy and active, but WOW my thinking, the stuff that comes to mind would make Spielberg take note, and I see I am not alone.
         Yep, three OH at age 11, 16, and 21, the first in 1969, when I was in ICU for five days! To quote an actor's response in the movie ARMEGEDON , well however you spell it-"This looks like a scene from Dr. Suess's nightmare."
           And by the by, my spelling used to be excellent, but I have lost the ability to so now.
           Since 1969 up until 2018, I have been psychoanalyzed, hospitalized five times, and attempted suicide twice. Why? Because of depression, anxiety disorder, harmful thoughts to myself....All because NO ONE ever  thought I would need counselling before during and after surgery.
          I never felt safe, and when I was 19, become afraid to go out to the store, movies and events, because I was petrified of the outside world. Don't know why.
          I was given treatment for anger issues, depression, disassociation (SP)
    and every thing in the book.except of course the missing pieces. I experienced gnomes taking my clothes out of my dresser, dreams that HAD to be real. I would, and still do, wonder whats real, where I am, and even tho I dismiss them, the eerie feeling stays with me all day. Its why I do not like going to bed, and only can sleep for four hours a night. 
          Your research is gratefully accepted.
          I have and still do practice the indigenous way of life and of being with nature. I am also planning on beginning lessons by a sensei to teach the ways of a buddist .. After living the way I have for 60 years, (and I accept what has happened,) there is too much damage that makes it difficult to process it over and over again. I want to spend my life giving, living more simply than I already do, and be a part of a community that shares the teachings of Budiism

    Thank you for allowing me to be heard. The Mended Hearts community is also a WELCOME Home for me.
    Ken

          So my point is, that Mary's research makes a lot of scary sense. And to be perfectly honest. I have no memory of my life between 1990 to 2016.
          I was married to an abusive alcoholic wife for 32 years, and while I struggled to help raise my children, I was a zombie. (no offense to Zombies)
          And I learned it had NOTHING to do with my wife's alcoholism. During the "marriage" I considered her useless, but alcoholism is a disease, so I get it. So I am learning that so so much was erased or damaged from the effects of the surgeries, (lord knows what they did in 1969, ).





  • 48.  RE: Sore sternum 1 year after OHS

    Posted 02-16-2020 16:43
    Hello Ken

     I was released from the nursing home 8 weeks after my Open Heart Surgery...OHS.....

    By that time I was failing to thrive, sitting wide eyed in the dark watching the evenings leave and then the dawns 
    come in until that wonderful day they told me, Pack your Bags, you are going home.

    I did a check on my computer when I did get home, typing in "PTSD In The Open Heart Surgical Patient" and found that PTSD is very high for the patients who may have had compromised early childhood lives or suffered war or domestic abuse, or even had bad surgical reactions before having the OHS.  

    I qualified on many counts for PTSD in the Open Heart Surgical Patient.  

    I was first diagnosed with PTSD in the 70's but it was called Shell Shock then.  There was no counseling or help available to us at that time but I put together a tool box to help me in life and I continue with those tools today

    Mindfulness meditations, Buddhism, The Tao, YouTube Videos where I listen to Alan Watts, Ram Dass and Wayne Dyer, Jordan Peterson, Gabor Mate,  and lots of meditation music.  I also write and paint daily, and am not really any good at it, but I can see the beauty in me come out on a sheet of paper in colors or words and that does help the self esteem alot.

    I did read your entire note and had to reply to you..I know what you mean about working with the little children, the innocence of the child is so purely wonderful

    Thank you so much for note to us.  You are a wonderful writer

    M











  • 49.  RE: Sore sternum 1 year after OHS