Everyone says the worst time is waiting before having surgery and you will feel much better after. I see my surgeon for the first time in a couple of days, and I doubt that I will sleep much the night before. It is hard when your brain says that everything will be ok, but the fear is still there! Hang in there and good luck. I will be thinking of you and will be looking forward to hearing how you do!
I was the same way but you will be amazed how fast they want all that stuff gone too. one tube, one iv line etc and before u know it you just have a few left. The time goes by so fast once you start to feel more like yourself. Someone once said try to find the humor when you are there at how absurb it is that they want you to walk with tubes and wires all over. Iloved my urine cath and once they saw my attachment guess what they got rid of. NOne of the tubes bothered me very much, even the chest tubes. Bothered me more once it was out. You dont know it now but you will be fine, the waiting is harded by far then just doing it. Good luck.
Michelle, I was you just a short week ago.. I came home yesterday and cannot believe I made it through this ordeal. I like you cried and cried cuz nothing seemed like it was going to be the same again. I felt that I was putting so much on the line and it scared me to death.. WEll I can say from my experience the first two days after surgery were difficult (doable) but difficult.
You will not believe how quickly you go from despair to wow, I feel so much better. NO one could say the words that completely put my fears to rest. Tell yourself, I have to do this for myself and my family. YOu will be amazed at yourself. I am one week post op and although I dont feel normal, i feel much much better. Right now my pain level is 0 my energy level is a 5, 10 being the best. But yesterday, my energy level was a 4 at times. Do take or ask for ear plugs and hopefully you will have someone there with your for most of the day each day with you if at all possible. Mostly just to fluff pillows, get more water and tell you no your hair looks just fine. lol Seriously, you will be amazed at how well you do.
I don't know you, but I care deeply that you are afraid and are struggling with anxiety, mainly because I struggle with an anxiety disorder myself and had heart surgery 8 wks ago, so i know what it's like. I wish I could carry some of the burden for you. I know how difficult it is. You will be in the healing process soon, hang on just a little longer.
(PS...I went through the Attacking Anxiety and Depression program with Lucinda Bassett a few years ago and it helped me immensly in controlling my anxiety, just a suggestion for something post surgery you may want to consider.)
Please remember you are capable and competent and you can handle whatever comes along
I hope you will remember this mantra
And repeatedly say it throughout the day
Your ears hear what your mouth is saying
Your brain is programmed accordingly
YOU CAN DO THIS and you will with courage and grace
I am writing today to Thank all the people on this site for all there love and support for my beautiful daughter and all her friends and family she feels the love coming from all directions. Please don't stop your prays we need everyone of them to make it through this week. My daughter is a strong person and will weather this storm too.
Daughter I Love you more then I can ever put in to words. We have been going through this you and I since you where 1 and the Doc informed me you had a heart problem. I know you are strong and you will face this head on and see it through because of you great kids.
You are one of the best Mothers around and will do this to be around for a very long time. Be strong and lean on me all the way.
Hi Michelle! I'm writing to wish you lots of luck for Friday...I will be saying prayers for you and can't wait for you to come back home so that we can resume our texts and chats-especially when you get feisty! This is why I know you'll be ok-because you're a fighter and is the strongest/bravest person I know! You have a wonderful family who'll take care of you in Boston and we are all here for your kids in Rocky Hill, so no worries!! These next few days will be tough but I know you're going to be fine!!! Mike and I wish you lots of love and support...please have faith!!! We love you, Mike and Maria
You are one of the strongest, bravest women I know. If anyone can do this it is you!! I know it has been a rough ride for you but your outstanding strength has truely shown! I look up to you a lot and want you to know how much I love you!!! If you need anything at all you better let me or Carly know...I know you will love you!!!!
Michelle - my thoughts and prayers go with you. I am at week 13 post op and have been back at work since January 2nd. The post op went much easier than the lead up worries and every day I continue to see progress. Those who are younger, like yourself, typically bounce back even faster than those my age (59). Fears approaching surgery are normal but do your best to relax and rest. You have done all the good things you need to do to prepare so try to quiet your mind and look forward to how wonderful you are going to feel very soon. Your kids will be wonderful as you recover and can help you with your rehab exercises! They will love being Mom's "trainer"! Sherry Bradford AVR 10/23/2012
I am Rachel, new here. I am 42 years old and had open-heart surgery to replace my mitral valve and repair my tricuspid valve 2 months ago. I wanted to reach out to you because I felt a lot of fear beforehand but really have done quite well.
I truly wish you the best and hope you will contact me if you need anything.
It was so good to see you yesterday
You are so beautiful inside and out
You are going to take control by doing the very controlling that which is controllable like buying the recliner,working and speeding time with the kids.
You are competent and capable and you can handle whatever comes along.
I know this is probably the hardest week so I will continue to pray for you. We're all here for you cheering you on. Take it one day at a time. Try to count your blessings and focus on the positive things in life and all the benefits of a new you. Before you know it you will be on the other side only getting stronger and stronger which is why we are all willing to take this incredible leap of faith and let the surgeons fix us. It will be worth it all! Let's keep going!
P.S. I am sorry I didn't answer sooner but I just got my date...January 31st...the count down has begun in our home too!
Your compassion and commitment to help heal the lives you encounter each day at your work and in the greater universe will be returned to you many fold
I can not express adequately the comfort and compassion you continue to give me in my journey
Your life is a gift and I cherish our friendship
You will emerge from this challenge healthy and whole
You pick a place for dinner and we will celebrate your FULL recovery
Let your family and friends love on you and open your heart and soak it all in. This love will heal you faster!! Love heals and it's scientifically proven. We're proud of you Michelle. Don't forget to pack Faith and Courage because your valve brothers and sisters here CAN'T WAIT to hear about your amazing recovery!! :-)))
I had my aortic valve replaced in June 2011. Soon you be all fixed up and ready for the rest of your life. Explaining to my kids was by far the hardest part. They were much stronger than me. I was so happy to see them the day after surgery. I'll be watching your posts and praying for you.
Just wanted to let you know that you are not going through this alone. I have the same problems you are having, I continue to get sad when I look at my girls and start to worry about the surgery. I try hard to stay positive which is tuff and agian being in the Operating Room all day and night right now does not help. We have also finalized our plans on who will take care of the girls between my mom and sister. I am glad that the neurosurgeon I am best friends withis coming to DUKE with my wife,brother and mom for the surgery. I have not taken any anti anxiety meds but question myself if I should. Ambien at night usually gets me a full 7-8 hours sleep,but hate the mornings right now. I continue to workout to try to stay strong which also helps my mood. I have a Cardiac Cath scheduled for Monday.
I just saw your note and wanted to respond to you asap.
If you are really struggling with anxiety, you may want to contact your physician. Perhaps he or she can prescribe some form of medication that help take the edge off prior to the surgery. We all need our sleep. And, as you know, worry is a miserable emotion in the middle of the night.
Sorry to hear to hear that some of the pictures and stories in the book conjured up a bit of fear for you.
Please know that was not my intent. The goal of the book is to provide patients an a better understanding of the realities of surgery.
I'd encourage you to re-read the first chapter of the book which highlights the success rates of heart valve surgery.
In addition, please, please, please, please remember that each patient is unique. I stress this several times in the book. What I experienced will most likely not be exactly similar to what you experience.
Lastly, regarding the waking up process in the ICU. I have heard from hundreds of patients that waking up in the ICU can be a very dislocating experience. Most patients are not aware that you may wake up with six tubes still attached. For that reason, I included that part of the story to prevent the immense confusion that can occur if you wake up in the ICU --- having no clue that you might be attached to so many tubes -- including the vent tube.
I hope that helps. Again, I'm sorry if the content shook you. I'm just trying to make sure you know what to expect as this process unfolds. Please let me know if you would like a refund and we will process that immediately.
Thinking about you!!
I hope you read Linda THE Tiger's post a few times- It definitely helped me feel better about your surgery. I think your fears are valid. I'd be scared to death too. We're all here if you need us! xo
Think positive. You(we) can do this.We live in the best place on earth and have the best medical care available to us. They do this stuff day in and day out.Be strong and let's save our energy for recovery.
Thank you for being honest about all your fears and worries. I completely understand where you are at since I also have two young kids and am 43 years young. I wonder what my wife and kids will do if I am not around. However, I know that if I don't have my surgery in the next couple of weeks I will only get worse, even possibly die. I am willing to take my chances. My thoughts and prayers will be with you as you have your surgery. You will not be alone. There's many of us in this together! Steve Bond
P.S. Michelle, don't worry about getting addicted to any pain meds. I think we women are tougher than the guys (sorry guys). I was given a prescription for pain meds before I left the hospital, it was Percocet, and I still have pills left over that I never took. Also, my incision was a little tender, but again, the biggest problem was wearing/not wearing a bra. Not because of the incision, but because the place where my chest tube had been was right smack in the middle of wear the band on bras fit. So I just said, bump it, I will "liberate" myself and not wear one for a while. Wasn't allowed to drive anywhere for 6 weeks anyway, so it worked out. We woman can kick some behind, don't let the guys freak you out, lol!
Linda THE Tiger
Hi Michelle, I'm Linda THE Tiger, lol. I had AVR in March 2012. I'm not on the site too much anymore, seems to be common after surgery, we just "move on" with NORMAL life. I was "checking in" this morning and read your journal entry. I just wanted to share a couple of things with you. First of all, I realize people are different and to some extent all of our surgeries are different, but for the most part, the "common" thread is "its not as bad as I thought it would be". Everyone's biggest fear is the breathing tube. Many have no recollection of it at all. I had prepared myself for the possibility that I would be aware of it and I was. My very drugged reaction to waking up with the tube still in was "yay...breathing tube...that means I made it!!!" I could feel it, but it was not painful, just different. My very next memory was hearing the nurse say "Linda, we need you to cough really hard for us, we're taking the breathing tube out", I coughed and then it was out. Not painful, just another "yay...this means I'm already doing really good". This was sometime the same day of surgery. All the other tubes and lines...I was aware of them, but none of them were painful and all of mine were removed (except the catheter and pacemaker wire, which is very tiny) within 24 hours. I was moved out of ICU the next day to the step-down unit, but prior to being moved I was gotten up into a chair, eating popsicles and drinking diet coke. I had the "push button" for pain control and used it whenever I thought something might hurt...like when I got out of bed the first time, etc., but even that was not as bad as I had feared. I was walking the next day, eating, taking all sorts of the usual post open heart surgery meds and simply AMAZED at how what I had feared for so long turned out to be almost a non-event. I was discharged on day 4 and flew back home to SC on day 5 with the biggest problem being the nasty TSA agent in the airport in Cleveland and my daughter straightened her out, lol. Now, I am not superwoman by any means, almost 64 years old, never been the athletic type etc. In the end, I spent way too much time worrying...I promise you...waiting was absolutely way worse than the surgery and recovery. We all experience the worry, it is completely normal, just try not to fear it. It really is very doable. I had my gallbladder removed back in the 70's and that surgery was way worse than my valve replacement. You will need to rest more than before surgery, it takes a little while to get your go juice going again, but you will be amazed at how quickly you recover. I know I have gone on and on, probably too much, but I just wanted to share my experience with you, feel free to read my journal, haven't posted in a while, figure I will wait until March 13th, which will be my 1 year anniversary. I feel great and am doing very well. Be sure to do cardiac rehab, it has made me better than ever. If I can answer any question, please feel free to ask. My email is email@example.com.
Michelle, I hope he following will help a bit. You will typically not be awake with the breathing tube in place. They keep you sedated and then remove it as soon as you are breathing well enough. I was aware when they removed the tube, but immediately went back to sleep and it was never scary. I get really queasy when I see tubes, blood, etc., so the breathing tube was spooky for me to think about also and a non event when I really went through it. It felt for a second like i might throw up but then i was immediately out again. The other tubes are more of a nuisance than anything and no worse than the typical IV - just more bulky. They begin taking them out as soon as possible. Usually it is the catheter that first day after surgery. then they disconnect the two stomach drains from the drainage bags and instead attach small bulbs that are very light weight. Those two changes help a LOT in terms of being able to move around in bed and getting up. A couple of days later they remove the drainage tubes completely. I thought that would hurt but they gave me a bit of morphine before taking them out and it did not hurt. It just felt odd. Then they remove the external pacemaker. Again, that doesn't hurt any worse than if you accidentally snag your hair on a comb. It feels strange but not painful. They leave the chest tube in until you are ready to check out but they usually remove the one in your arm earlier. It is like any IV.
I did not watch any videos or look at many pictures ahead of time because I knew it would frighten me instead of inform me.
Another thing I hope will help is to remind you that not only has surgery helped since Adam's surgery - but also post op care. There is a much greater understanding of how to control pain and nausea than been two or three years ago. You will have a team of trained professional postoperative folks taking great care of you. Follow their instructions, let them know when you are afraid or have discomfort and they can help! You are going to do great! Sherry Bradford AVR 10/23/2012
I am scheduled to have surgery on 01/22/13. I too feel the nerves thing, i have not taken anything for it yet. I have taken an ambien on one night to get sleep which really knocked me out. I am really nervous that I have to go so far to have surgery as I am from Denver and will be having surgery at DUKE medical center by Dr Glower. He is considered one of the best at valve surgery. I am an RN first assist for a group of nuerosurgeons and the main one I work for contacted surgeon he went to Harvard with that is head of thoracic oncology at DUKE, that said this is the Dr to go to. He was very nice and has published many papers on this procedure. I try to let that put me at ease,but still super hard to do. Working as surgical nurse the last 11 years does not help. Again Have A Great weekend.
Just wanted to see how you are doing. I have been feeling probably the same as you lately.As my date for surgery comes closer i feel more anxious. I have had a tuff time keeping my blood pressure under contro now up to 40mg lisinopril. Iam scheduled for cardiac cath next wed. I am praying this goes smooth with no problems. Well I hope you have a great weekend,low stress, I am trying for the same. Lets get through this.
Hi Michelle. It's totally normal to be scared of this heart surgery thing. It's not really a recreational activity. But if you read through the journals (mine included), you'll see that most folks tolerate it fairly well. Everyone is at least anxious - and I'd say rightly so. It focuses the attention. So focus on:
... knowing that having surgery is the smart thing.
... knowing you are giving a gift of life and love to your kids.
... knowing this surgery is how you get to be a grandma.
... knowing how happy you will be when you wake up and see your family.
... planning your recovery.
... making the most of each day, now and after.
You will, with overwhelming odds, be OK. When you are looking forward to the good things on the other side you'll be calmer.
I asked my cardiologist to prescribe some anxiety medication for me which helped me rest at night (Xanax, or the generic Alprazolam). You might want to investigate this because I also had a difficult time resting and was waaaay spun up before surgery..
Adam's book gives a broad macro view of the experience, but each person experiences things differently for sure. For example, I didn't take any heavy pain meds the moment I was released from the hospital -- only alternated Tylenol and Advil. I was also doing yard work 3 weeks after surgery on no pain meds at all and never required cardiac physical therapy. We're all different so don't dwell on things that might not even apply to you!! :-))
Hi My love,
First of all I wish you a very happy new year full of hope,trust,believe,courage and love!!
I know every minute seems like hours even days right now but you will beat this and come back even stronger!!You are our rock and we all rely on you but today we are here for you and we will be your rock and let us take care of you for once!!
You are my best friend and my sister you went with me through good times and a lot of bad but we always stood up and kept going NO difference this time.
Who cares if you want to yell at everybody or cry every 2 minutes this time it is about you and you have to do what is right for Michelle and screw the rest of the world...go for it and I'll be there if you need me or even if you don't
I love you like my sister(even if I don't have any lol)You always been here for me no matter what and now it's my turn to give you my shoulder to get support
I love you and your family(even Mike LOL) and will always be there for them
I know you are scared of the unknown and I know it's easy to say I understand because I'm not the one who is going through this but I know deep into my heart that you will be fine it can't be any different because I need you to yell at me sometimes when I have stupid thoughts and to make me laugh when I'm in tears
Well all that to say I'll be there and I'll see you waking up from your surgery and bitching at that nurse because the meds aren't strong enough;))We will be fine
Michelle- The waiting is the hard part but you have to trust in GOD on this one. I had the same thoughts you have and just had to realize that the surgery was a must if I wanted to see my children grow up. As the days got closer I began to have peace as I knew this had to be done. One thing I can promise- the tubes, wires and whole experience are worth it once you see your family! I pray for peace up until the surgery and a successful outcome! All the best!
Try to take some solace in knowing that EVERYONE agrees that the waiting is the worst part of this surgery. What you're feeling is normal. You should hope for time to pass even more quickly so you can get it over with and be on your road to recovery.
as far as the tubes and whatnot during your hospital stay....the first two days when you have the most 'stuff' attached you will be drugged. You just lay there and let people take care of you. You should not have any pain. And if you do, it's their job to make sure it goes away. The hospital employees know exactly what they're doing and will take good care of you. A few days in, you start to feel like 'wow, I made it' and you'll get your confidence back.
I used guided imagery prior to surgery to helpmeet focus and remain calm. Try it out....here's a link to some info.....
Hi Michelle. I will be keeping you in my prayers. Stress is normal and crying as well if you read my journal you'll find it took me till just before my appointment to let out a good cry with my wife and then with The Lord in prayer to really find the Godly peace that only he can give. I suggest letting it out with whomever you can confide in then seek The Lord through the reading of his word and in prayer. It is a stressful time but the surgery will come and go before you know it and you will be back on track with a healthy pumping heart.
Hi Michelle - I'm 48 and the mother of 6 children (the youngest two are 7 and 9 yrs old). I will need to have my aortic valve replaced in the next 3 - 6 months, too. I just gave my kids the news today because I wanted to have a normal Christmas and not worry them or my 86 yr old mother. I was pretty anxious the first couple of days after the doctor told me I needed the surgery, but knowledge is power and I feel like The Patients Guide to Heart Valve Surgery is going to help ease my fears. I will pray for you to have a speedy recovery and ask for your prayers in return. God bless you and your family :)
Michelle, I am another fellow AVRer on this site. I can certainly identify with your stress. I just want to share what many on the site told me ( and it was so true) - the wait for surgery is the most difficult in terms of stress. You think of all that might go wrong, you worry about getting things arranged, or getting worse while waiting....and on and on. Do your best to relax when you can. Take deep, slow breaths when you get tense. Do anything enjoyable to you to occupy your mind. Read some of the postings on this site and Adam's book to answer your greatest concerns. It will feel strange to be so self focused right now but that is perfectly normal and necessary. Once you have the surgery, time will speed up again as you focus on recovery. While certainly not pain free, this surgery is actually one that responds very well to pain meds and you will be surprised at how very well they will work to keep you comfortable so your recovery moves forward quickly. You will do great and I look forward to hearing about your recovery. Lots of prayers heading your way for the release of stress and for your successful surgery and recovery! Sherry Bradford, AVR 10/23/2012 (I have a cow valve and pig tissue was used in the graft needed on the ascending aorta) .
I don't know you and you don't know me, but we are brother and sister in the heart health journey.
You're going to do great. We are walking with you. We all made it and you will too. Before you know it, you will be a few months post surgery, and encouraging others just starting now like yourself. The doctors know what they are doing and heart surgery is sooooo advanced these days. You are one in a thousand other surgeries done by your doctor and just as they were routine, your's will be too.
Praying that you feel the warmth of our support and the hand of God at your back, walking with you.
Thanks for the invite. You have a lot of support which is good medicine.
I got ( Brigham's suddenly sprung it on me ) a fed-ex package today with a list of things to accomplish before next Wednesday/thursday. One is pajamas and slippers and such and another is clearance from my dentist that there is no bacteria hiding in my pearly whites... so today after much searching ... why searching you may ask ... something about Christmas vacation and the New Year holiday and how some/most dentist offices are now closed... that's why earlier i said i felt sprung on and i live on the Cape where much water surrounds this little land of sand which is inhabited by relatively few dentist. it's not like i can pick a stone up and throw it and hit one. ( which can be done if one should seek a landscaper, tax-accountant or attorneys versed in accidents-auto.)
So tomorrow i have to get x-rays of all my teeth and then early Saturday morning a very kind and caring dentist is going to open his office up and have a chat with me about what he finds ... i hope nothing and if this is so he will be able to fax Brigham's with his certification that all is well in my mouth. Thus the operation may proceed as scheduled.
I tell above because we are going to the same place and just incase this matter has not been brought up to you yet and you might not expect this and or you did not have the same experience last January when you had the stint that you should be aware that this might happen to you... and you did state you would like to keep busy. To the dentist young lady and get certified or "Bona fied" as in "O brother where art thou?" ...it was a movie... in it if you chanced to view "the soggy bottom boys" ... the wobbygals ... it was an attempt at humor on my part.
That aside i liked what Alex Vigil spoke to you ...in fact I liked all of the messages you received... know you are not alone we all will be right there with you.
Shell, I often look at the cross that Jesus had to bear as well with awe. Growing up I stared at it in fear and now I see it in a different light. Through all the suffering, there is peace. The peace of hope, love and quiet. You and your family have sustained many hardships and struggles. Through them all your love for each other has grown and strengthened. Without doubt, this will continue. I am here for whatever you may need.
Love you! Diane
Michelle- First of all I want you to know that you will get through this!! I have no doubt in my mind. Never doubt that. You are a very strong person and you are not alone. You have an amazing family and I want you to know that I too will walk with you along the way. You are a very special friend To me and I want you to know as you recover and you will I'm here for you and your family.
The Sandy Hook situation is very sad. It's almost too much to absorb. I wasn't directly affected by it so I could easily put it out of my mind, yet that doesn't seem right when so many are grieving right here in CT.
Where are you having your surgery? I had mine at Yale. Dr. Sabet Hashim performed the surgery...had great results with very few complications.
Best of luck. Look forward to following your story.