I’m due for ASD closure by open heart surgery (horizontal opening - the cat smile) on Friday at st Thomas’ in London. It was diagnosed when I was 17, but for the past 2 years I have put it off through fear as it is, pretty big! (As the surgeon said, I have no door, and no hinges!) in the time I have put it off, I have had a 8 month old daughter, and I live for her now as I need to be there for her.
I’m so scared. I’m not sleeping, eating, having nightmares of my family and friends being told I died. I need to know what exactly happens, from the moment I get taken to theatre, to the moment I come out.
They have said ill be on ITU, then HDU, then back to a ward once I’m recovering well. They are also going to do it horizontal (the cat smile) alsong as all goes smoothly.
I’ve left this so late I know, I’ve only just found this forum and I go in on Thursday afternoon to get preped.
All support, advice and explanations are greatly appreciated. I have never been so nervous, it doesn’t help I quit smoking the beginning of oct, but started again last night as I didn’t sleep and was throwing up!
I just had my ASD and PFO repaired back in May after being diagnosed at e age of 39. With a husband and four kids I knew that having the repair done was the right decision for me. Like you the anxiety associated with it was terrible. I worried about it and started to second guess by decision, but the fear of having complications and future health problems associated with both holes was motivation enough to proceed.
I had the repair done through the catheter and was mostly awake for the entire procedure. My cardiologist made sure that I was given enough sedative to be calm and relaxed but still be aware of what was happening.
My procedure took longer than anticipated because of the second hole and the need to use two different devices but it was uncomplicated other than that. The recovery was relatively easy, I only had to spend one night in the hospital on the Cardiovascular unit. Since having the repair I do feel better. I am so glad I chose to have it done.
I am almost to my six month point, I have been on a daily anticoagulant and aspirin regiment as well as blood pressure meds to help with the heart palpitations. At the end of November I am hoping to quit the anticoagulant and only have to take the daily dose of aspirin.
I think you will be glad you went through with it. It really is one of the easiest procedures to have done. Don’t forget to ask questions. Write them down and ask away. Get as much information from your doctors as you can and need. There is no such thing as a dumb question when it comes to your health. Good luck and keep us posted.
Welcome! I also had open-heart surgery to repair my ASD this year in January. I had several holes, the doctor used the expression "swiss cheese", and the largest hole he said was the biggest one he had ever seen. Anyway, I also was very scared about going into this surgery. I had the same dreams you are having. I had a husband and five children to think about and they were my motivation. I honestly don't know if I could have gone through it otherwise. When I got to the hospital in the early morning hours for my surgery, I remember contemplating running out of there. I am so glad I didn't! Just remember the doctors do these procedures all of the time and you will make it out better than before.
The actual recovery in the hospital wasn't as bad as I imagined. I had my surgery on Monday and I was discharged Friday. I was one day in ICU then moved to the cardiac unit. The nurses and doctors are very good in there and attentive to your needs. (I had my surgery at Dartmouth Hitchcock Medical Center in New Hampshire, USA).
My husband stayed home with me for a month after the surgery to help around the house and with the kids. You won't be able to do much physically during that time. Also, for the first week home I was pretty out of it from the meds. The worst part of the recovery was trying to sleep at night. I had to arrange several pillows in sort of an A-frame around my body. I also depended on the pain killers for the first month but the doctors were sure to get them away quickly. After that you can use aspirin, tylenol, etc.
You will do fine and you will probably have more energy and be able to breath easier after the surgery. You will be around for a long time for your daughter! Good luck and feel free to contact me if you have any questions.
Four years ago I had open heart surgery to repair two holes - one large, one small - at the age of 52. I had been diagnosed several years before, but kept putting it off, mostly out of fear. I finally had the surgery after going to a cardiologist's office and complaining of palpitations. It turns out I was having severe atrial fibrillation and was wheeled immediately into the hospital next door. After the surgery, which took place after a cardioversion and about 2 weeks in the hospital on medications, I stayed in the hospital about 5 more days. During that time I experienced a significant amount of pain, but was given medication in liberal amounts to control it. One of my most vivid memories is the breathing exercises I had to do at least a couple of times a day to get my lungs clear post-surgery. They were difficult, but necessary, and got better as time went on. Also, I remember being surprised immediately after surgery at how soon they made me get up and walk (in the recovery room).
One of the best pieces of advice I received was to use a recliner after coming home instead of immediately sleeping in a bed at night. I needed it for 18 days, though I think that's on the extreme side for most people. After that I was able to sleep in a bed with pillows propping me up.
Another thing I wasn't prepared for was how much the surgery affected my mood - some depression lingered even after the first few weeks. This doesn't happen with everyone, but if you know it might be coming, you'll have a better idea that it will pass. The main thing, though, is that once it's done, eventually you're no longer aware of every heart beat and your level of activity increases over time.
Most people get nervous before surgery; it's hard to give up that much control. It's good to remember that the doctors know what they're doing. No two experiences are the same, even with the same surgery, so God bless yours and I look forward to hearing your good report soon.
Please stay strong! I had ASD closure by open procedure straight down zipper in Oct 2009 (3 year anniversary yeh!!) at St Marys and my son was nearly 2 and honestly have never been so scared in my life. I was diagnosed following 2 strokes, (first episode in hospital away from my son) and was told I needed the surgery sooner rather than later. I pretty much panicked every waking hour from the day I was told till the day I was admitted and it sounds awful but I felt no one understood how scared I was.... everyone telling you it would be fine when you just want to shout ' well you bloody have it done then' I was in CCU for 12 hours, the first thing I remember is waking up after the surgery thinking oh my god i did it i'm alive! 12 hours later I was transferred into HDU where I stayed for 6 days and was discharged straight home from there. Don't get me wrong it is the hardest battle I have ever had and doing silly things like washing your hair and wiping yourself after the toilet poses a whole lot of issues as I had the sternum break to deal with and you would be amazed at the things you can't do or will find difficult, I had my hair cut into a shoulder length bob to make it more managable and weirdly got my waxing done all pre op so I felt cleaner in myself post operatively. I smoked til the op like you are, deciding I would quit post operatively as I wouldn't be able to go out and have one! My hole was 2.5 cm and had narrow lower margins so they couldn't do it through the groin as originally thought. 3 years on and I am pretty much ok, get flutters which I accept, on clopidigrel probably for life but thats more due to the strokes than the op. I am here if you would like to talk about anything, wish I had someone when I was going through it! My scariest thoughts were probably the same as you are having so i do understand! You will need help with your daughter if they break the sternum, you won't be able to lift her or change her nappy at first but with determination and good pain killers I soon managed it, my partner couldn't take too much time off work and my father was terminally ill at the same time (even ended up on the heart ward with me at one stage!) so found ways to do things by myself usually good planning and giving myself lots of time and praise and treats! You will cope and you will be fine you have too much to live for to give up, your heart is full of love for your daughter and a mothers love is the strongest type I honestly believe thats what helped me to get through it. Hope to hear from you & Good luck x x x
I am now 4 weeks out from having open heart surgery for ASD repait. It was the open sternum approach and the ASD was a "venous stenosis" type. I am now 54 yrs old and had surgery at age 8 for a "hole in my heart" but at that time they didn't detect the large sinus venousus. I was fine until about 10 yrs ago then started having increasing cardiac symptoms which resulted in having the open heart surgery on 9/25/12. I was nervous about the surgery but basically thought it would be ok...some problems sleeping for a few weeks before surgery but I really tried to "get things in order" so I didn't have to worry about those kinds of things,,even making sure there was enough cat food, stuff in the freezer to just warm up, writing out monthly checks ahead of time,,just practical things- helped me keep my mind off the surgery...The surgery itself it several days after, I have little to no memory of,,I guess I was getting a bit of pain relief...I did well in the hospital and was discharged in 4 days- I was ready..I could basically walk by myself, do stairs, and do my own self care..My sister made meals and did other household tasks. Not allowed to drive or pick-up, push, or pull more than 5 lbs. Quite limiting. But now, at week 4 I saw the surgeon and he said I can drive as long as I don't take pain meds during the day and I can lift, ect up to 10 lbs now.... I'm taking the pain meds at night only...things are going pretty well although I am still really tired and need to take a serious nap every day or i get over tired....I wish you all the luck in the world for your surgery...let us know how you do...
Thank you all so much. I’m on the ward now, they think ill be going down first on the list tomorrow morning. They won’t let me take my rosary as its metal, so please pray for me. I’m looking forward to this being over with, I just want to wake up, I don’t care about the pain. Xx
I'll definitely keep you in prayer. Also, don't forget to recite the "Our Father", since you don't have your rosary. I know how much it helps me to meditate on prayers or scripture when I'm anxious. Psalm 23, "The Lord is my Shepherd....:" is a good one.
Good luck Freyahelen you will be in my thoughts and prayers tonight and tomorrow, just think of your daughter and you will have the strength to come through this, ask the doctors for something to relax you tonight as this is the hardest time, I was admitted the day before too and spent the whole night looking out the window and writing letters for my son and family....the best feeling in the world....coming home 8 days later, finding them in my bag and ripping them up!!! God Bless x x x
They have now changed the time from between 10 till 2, which really bothers me as I kept seeing clocks at 11.11am, I’m probably looking into too much but I’m scared its a sign that something bad is going to happen then. I just told the nurse and she looked at me like I was crazy!
They do that all the time, they'll probably change again tomorrow too, I really think you need to get the nurses or doctors to give you something to calm you down or you will just get more and more anxious. They gave me something the night before and my pre med too on the morning and I didn't go down till half 12 so it had worn off! I'm just sitting here, thinking of you and how I felt that night,it was cold and clear and I could see over london for miles, watching the people walking past wondering how could the world just carry on when I'm going through this. Making deals with God, planning all the things I will do if he just lets me come through this. Do you have to have the chlorhexdine shower? They gave me a bottle of smelly pink stuff that is supposed to make you shiny clean before theatre? I really hope not it stinks! Oh and something funny that may just make you smile.... the evening before my op the consultant and junior doctors came round to go through the op etc etc and for me to sign the consent form that was fine the consultant was going over what they would do and the risks associated and all of a sudden one of the junior doctors passes out and hits the floor, face first in my room!!!!! Ends up bleeding profusely and being taken to A&E in the hospital to be treated for his injuries and to determine the cause of his fainting attack! Needless to say everyone kinda forgot about me for a while. Talk about an omen!
They do that all the time, they'll probably change again tomorrow too, I really think you need to get the nurses or doctors to give you something to calm you down or you will just get more and more anxious. They gave me something the night before and my pre med too on the morning and I didn't go down till half 12 so it had worn off! I'm just sitting here, thinking of you and how I felt that night,it was cold and clear and I could see over london for miles, watching the people walking past wondering how could the world just carry on when I'm going through this. Making deals with God, planning all the things I will do if he just lets me come through this. Do you have to have the chlorhexdine shower? They gave me a bottle of smelly pink stuff that is supposed to make you shiny clean before theatre? I really hope not it stinks! Oh and something funny that may just make you smile.... the evening before my op the consultant and junior doctors came round to go through the op etc etc and for me to sign the consent form that was fine the consultant was going over what they would do and the risks associated and all of a sudden one of the junior doctors passes out and hits the floor, face first in my room!!!!! Ends up bleeding profusely and being taken to A&E in the hospital to be treated for his injuries and to determine the cause of his fainting attack! Needless to say everyone kinda forgot about me for a while. Talk about an omen!
What a riot! except for the student! I think I would have probably laughed a bit even though I shouldn't have...I got to shower 3 times with some soap/scrub brush thing- kept me busy the night before and early morning of surgery....hope all goes well..and DO take something to relax you,,,it will help everything at this point.
Morning! They gave me some anti sickness and a sleeping pill to help me sleep, and they’ve just woke me up to wipe me down and put me in a gown. just wanna run away out of here! Xx
just wanna run away out of here! Xx