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Heart Valve Replacement

  • 1.  Heart Valve Replacement

    Posted 03-13-2018 19:47
    Hello,

    My name is Mary and I live in Connecticut. I am scheduled for open heart surgery on April 3rd, and I am terrified.

    I am 47 years old. I always knew I had a biscuspid aortic valve that would need replacing, but I was told that this would most likely happen in my 50s or 60s. I pictured my kids being a lot older. Right now, they are 11, 9, and 4. I also will need repair on my ascending aorta. 

    I met my surgeon at Hartford Hospital. However, I have so many questions and thoughts about which valve to pick, etc that I am exploring other options too, like Yale or Brigham and Women's. 

    I have been reading some of your posts...some of you with children with heart issues....some of you adults...all your stories encourage and inspire and give me comfort. So thank you for that.

    I am glad to be a part of this community, and if any one has any advice, feel free to send it my way. THANK YOU!

    Mary :)




    ------------------------------
    Mary Sirianni
    Teacher
    Weatogue CT
    ------------------------------


  • 2.  RE: Heart Valve Replacement

    Posted 03-14-2018 02:58
    Have you looked into TAVR where the valve could be replaced without open heart surgery?  Please get some other opinions.

    ------------------------------
    Francee Levin
    Columbia SC
    (803) 788-1207
    ------------------------------



  • 3.  RE: Heart Valve Replacement

    Posted 03-15-2018 09:27
    Mary,

    I can understand you concerns regarding your upcoming valve replacement. When I was laying in Hartford Hospital seven years ago just before my aortic valve replacement surgery I was thinking about how often I was told that someday in the future I would need the biscupid valve replaced. It was then that I realized "This is the future". Whether 47 or 61 you can't avoid the future when it arrives.

    25 years before me my mother, also at 61, had the same surgery, in the same hospital with the the same surgeon and recovered on the same floor as I was. So much like the future you can't escape genetics.

    After my triple bypass, aortic valve replacement and aortic graft (throw in a pacemaker for good measure) I realized exactly how bad I had been physically. I left Connecticut, moved to Hilton Head and have never felt better.  You can explore all the options available but in the end you will probably find that these procedures are being done every day in many, many places.

    As Ralph mentioned Cardiac Rehab is an important part of the process. The nurses had a bet going that after the first day I would never return! But, I stuck it out and after the treatment ended my wife and I took a trip to Montreal and I was walking all over the city.

    The local Mended Hearts, Chapter 9, in the Hartford area is terrific. If you haven't been in touch with them I would suggest you contact them. A great source with great people who have all been when you are now.

    Take care and keep us informed.

    Mike Nicastre



    ------------------------------
    Michael Nicastre
    Hilton Head Island SC
    (860) 638-7351
    ------------------------------



  • 4.  RE: Heart Valve Replacement

    Posted 03-16-2018 09:49
    Hi Mary: My name is Peter G. Stewart. I am new to this forum. In fact, today is my first day. So, let me let you know that being scared to death is very, very normal. I have had triple by-pass, a new aorta valve and a month  ago  stent was put in. I am not familiar  with your situation but I am  believer in second opinions. For example when my valve was replaced, I had a TAVR ( TRANS AORTA VALVE REPLACEMENT.) I did not need my chest open. I was 71 at the time. The age limit to my knowledge has been reduced and will continue to be reduced as time goes on.
    My point is you might want to get other opinion if time allows. It's might prove to be advantageous.
    Peter G. Stewart

    ------------------------------
    Peter Stewart
    Scottsdale AZ
    (480) 203-2565
    ------------------------------



  • 5.  RE: Heart Valve Replacement

    Posted 03-14-2018 05:20
    ​Mary,
    Almost 11 years ago,  I had Ascending Aortic Aneurysm surgery (Bentall Procedure) and an Aortic Valve replacement (Edwards Lifesciences Biologic Valve) at Morristown Medical Center. These are relatively uncommon procedures which can be best completed at either Yale or Brigham and Women's Medical Centers. Your cardiologist should be your advocate and suggest the best surgeon and best hospital for you.  If you want to discuss my experiences further, you can contact me during daytime hours.
    Best Wishes,
    Vic
    Vic Fabry, President
    Mended Hearts of Morris County
    973-879-5647MHoMC

    ------------------------------
    Victor Fabry, President
    Mended Hearts of Morris County
    Morristown, NJ
    fvfabry@gmail.com
    ------------------------------



  • 6.  RE: Heart Valve Replacement

    Posted 03-14-2018 11:29
    Dear Mary,
    Your case pulled my heartstrings to sign up and respond on this forum.
    I too went through heart surgery in my 40s. I was 42, had eight young children at home ages 16 down to 4, and underwent triple bypass. The physical and emotional recoveries are very similar. It’s been 14 years ago now, and all is well. For the last ten years I’ve been a MH visitor at my local hospital where I had my surgery.
    I can only scratch the surface of encouragement for you here. Your heart is in need of repair and the best thing you can do for it and your loved ones is to invest in your future by having your surgery, participating in cardiac rehabilitation, and healing well.
    As a mom you do what it takes to be there for your family cuz you want to see those babies of yours have babies of their own and nurture them in everything along the way. You just need to be on the receiving end of the nurturing for a time.
    I would love to talk with you more.

    Diane Caputo
    Chapter 130
    Olympia, WA


    Sent from my iPhone




  • 7.  RE: Heart Valve Replacement

    Posted 03-14-2018 17:18
    Welcome to the family Mary. Like you many of us were terrified when we got the bad news about our heart and proposed surgery. By way of credentials I had a quadruple bypass, a bovine tissue valve to replace my mitral and a CRT-D implanted 11 years ago. My mitral is giving up the ghost again so new set of things to think about.

    There are a lot of positives for you. They found your heart problems and are able to repair it to near new condition which means a long life with your children. Open heart surgery to fix these issues has become quite common, and while not totally without some risk, they do hundreds of thousands a year with a high degree of success and little problem. Your youth also plays to your advantage and recovery while different for each of us should be quick and uneventful.

    Learn all you can through literature and talking with medical professionals so that you understand what they are telling you. Take all the medications they give and follow your doctors treatment plan and you should be good as new soon. Make sure once your surgeon approves that you go to Cardiac Rehab , it pays dividends.

    We'll keep you in our thoughts. Good luck to you and your family and try to relax

    ------------------------------
    Warren
    TucsonAZ
    ------------------------------



  • 8.  RE: Heart Valve Replacement

    Posted 03-15-2018 07:50
    Hi Mary,

    As a visitor here in Dayton, Ohio at three hospitals, I see a lot of patients including valve replacement, TAVRs, bypass (like me), stents, AFIB, CHF, ...  TAVR is a relatively new treatment. Originally it was used for seniors who couldn't handle open heart surgery. It also requires a specially skilled cardiologist to perform the procedure. I know Mended Hearts has been lobbying to open the procedure up to more youthful patients. Our past president of our local chapter was involved in that effort.

    Once you have had the valve replacement, open heart or TAVR, I can't stress cardiac rehab enough. Once your doctor approves you to do the rehab, sign up for it. Most cardiac hospitals offer rehab, and that issue where I recommend doing it because it is monitored by nursing staff and physical therapists. Insurance typically covers 30+ sessions. The staff keeps a record and tracks your progress. They also give you ECG strips to take to your cardiologist. It's a good deal and you'll recover quicker.

    When I had my bypass surgery, rehab had me up and walking in the ICU. This continued to the regular room and increased. Rehab would walk me in the morning and my wife would walk me in the afternoon and evening. My wife and I are ballroom dancers. I was supposed to be in the hospital 5 days. On the 4th day my wife and I stopped at the nurses station and did a rumba for them. I was released that evening.

    Listen to your doctors, take your prescriptions as prescribed, go to rehab, and watch the diet; you will be surprised at how quickly you recover. The hospital nutritionist will answer all your diet questions. One thing I tell the patients I see, keep paper and pencil close and write down any questions or concerns you have. That way you don't forget anything when the doctor or health care professional pops in your room or you go for an office visit.


    ------------------------------
    Donald Kanipe
    Beavercreek OH
    ------------------------------



  • 9.  RE: Heart Valve Replacement

    Posted 03-20-2018 08:41
    Good Morning Everyone,

    Again, I cannot thank you enough for the words of encouragement....

    I had a tough night last night...couldn't sleep thinking about my April 4th date of surgery, imagining how I am going to feel the night before.

    I decided to go to Yale after talking with three different surgeons. I am as comfortable as I am going to be with this team; however, I am just overwhelmed with fear. Can anyone tell me about the breathing tube and chest tubes? Also, what is it like when you wake up? How do you feel? Are you aware of the breathing tube? Any feedback is greatly appreciated....

    Love,

    Mary

    ------------------------------
    Mary Sirianni
    Teacher
    Weatogue CT
    ------------------------------



  • 10.  RE: Heart Valve Replacement

    Posted 03-20-2018 11:50
    Mary ~ I'm sorry to read you are having a difficult time of it. Unfortunately often our anxiety can be far more frightening than reality. Wish there were something we could do or say to alleviate your anxiety about the pending procedure. Thousands of open heart procedures are performed every year with a high degree of success and patients are in and out of the hospital within a week. There is no reason to expect your procedure will be other than routine for the surgeons.

    The endotracheal tube (breathing tube) isn't all that bad. I'm actually suspicious that they put them in to prevent you annoying the doctors and nurses, i.e. you can't talk with one inserted. In fact your method of communication is sign language. Now me, being illiterate in sign language only knew one word, which coincidentally required just one finger, and believe me I was able to communicate my feelings to the doctors and nurses in a clear concise manner. The biggest issue I had was speaking like Mickey Mouse on Helium. It's just not that uncomfortable and you'll be drugged so will hardly be aware of the situation.

    When you come out of the anesthesia you'll be groggy and a bit confused with the fog slowly lifting. They will keep you pain free and provide medication whenever you feel you need it.

    Let me be honest, the worst part of my open heart surgery was when we drove off the hospital property on the way home. I immediately panicked wondering how any self respecting medical professional could possibly allow someone in my condition to go home on their own. It was frightening to think my safety net was not by my side. I got over it and life quickly went back to normal, me whining I wasn't well and my wife telling me to do it myself. I'm sure you will to. Try to relax a little and not concentrate so much attention on this. You are in great hands and they will take excellent care of your needs and you'll be home before you know it. Then the real pain begins...listening to daily news

    ------------------------------
    Warren
    TucsonAZ
    ------------------------------



  • 11.  RE: Heart Valve Replacement

    Posted 03-21-2018 22:47
    Hi Mary,

    It is quite normal to feel full of fear/anxiety for this surgical procedure.  The unknown is always
    scary.  In fact, I almost called my surgeon to tell him I couldn't go through the surgery. 
    The truth is:  we have no choice; we have to have this surgery.   My family rallied around me and
    helped me have the courage to go through it.  When my neighbor had open-heart surgery, he told me he was out celebrating St. Patrick's Day a week later  I said to myself, "Yeah, sure?!"  But actually, you will be surprised how fast you will be up and about. 

    I remember waking up in ICU feeling uncomfortable.  My family was told I would sleep, and they should
    go home.  However, for some reason I was wide awake.  I really needed my husband to be with me.
    that night.  Also, make sure you have a pen and paper because you will have the breathing tube in
    and can't talk.  This way you can tell the nurses what you need.  My nurse was like Florence Nightengale and brought me ice chips.  Ahhhh!   I finally slept. 

    The breathing tube wasn't bad; and the nurses are quite helpful and talk you through it.  I remember the respiratory therapist said, "We will be taking out the tube."  It came out about 4 hours later, and It did not hurt. The following morning, the two chest tubes and catheter did not hurt when coming out either.  It was a strange feeling  peeing through a tube.  A special apparatus was used to hoist me out of bed the next morning.  In fact, I was really hungry for breakfast, but my appetite was a little decreased.  I think the hardest thing for me was getting into bed.  It is a must that a nurse helps you and shows you how.  Also, if you have pain 4 am, do not wait to call the nurse because you will be uncomfortable.  There is a reason for pain meds, and it will help your healing when you are pain free.  I did not get addicted to oxycodone.  For me, it just took the edge off.  Pain made me irritable.  And there was time when I went
    long periods without pain med, but you probably want to take it at night so you can sleep.

    The family was concerned where I was going to sleep - upstairs or downstairs b/c of climbing the
    12 steps we have.  I did climb the stairs and slept upstairs with pillows propped up.  I did not lay
    down on my back for a while.  I also put a riser by my bed.  That little increase in height helped
    when I had to get out of bed.  And use your red heart pillow all the time when getting in bed and out
    and coughing and when in a car.  

    I liked the fellow who said he did rumba on day 4.  It took me longer.   Don't be upset if you feel it uncomfortable to walk those early days or to step down.  It will come.  By the time I left the hospital on day 5, I was walking but not far. Walking is good in small doses and gets the body back.  
    Physical rehab is truly a must.  I was in good shape exercising zumba 5 days a week, but it took a few months to get back my stamina.  Every patient is different.  Your physical and emotional bodies
    have been through a major surgery.  The experience can feel overwhelming, and that is ok. 
    And it is ok to cry to release those feelings.  It helped me.  I had a rare tumor (2 in a million) called
    a paraganglioma by my aortic artery.  I had to take an alpha blocker prior to surgery to keep my
    blood pressure stable, and there was a concern of cancer.  My voice was raspy
    for 9 months because the tumor was by the laryngeal nerve.  I was very lucky.   No cancer!
    But I do have to be monitored every year of reoccurrence.  Within three months, I was back
    to zumba. 

    Mary, I hope by sharing my experience it helps you. I was not prepared for this surgery even
    though I read about it and watched it on u-tube  In fact, Adam Pick wrote such a book. 
    that I purchased after my surgery.  It helped me understand my surgery.  Some people feel
    good knowing about their surgery; some do not.  Many people have gone through this
    surgery and come through fine.  Mary,  I know you will be able to get through it, too.

    My best to you.

    Dee Rincon
     
     











  • 12.  RE: Heart Valve Replacement

    Posted 03-21-2018 23:05
    Mary,

    I woke up in CICU with 4 drainage tubes and a breathing tube. You are aware of the breathing tube. You can't talk. I motioned to the nurse I wanted to write something. She brought me a pad of paper and a pen. I wrote "cough". The respiratory person and the nurse took the breathing tube out.

    Later they removed the drainage tubes. This is done after a period when the drainage is negligible; in a lot of cases the first day. In my case I had a couple of male nurses. One was an old hand and the other was a trainee. We were watching a football game on the TV and they removed the tubes at halftime.  They snipped the threads holding the tubes in place, had me take a deep breath, let it out, then take in another and hold it. Then the tubes were withdrawn. I told them it looked like I gave birth to an octopus. They applied a dressing and I was good to go. I spent an extra day in the CICU because my surgeon was using me to hold the bed for his next cardiac patient

    I got this harness with these handles on it I could squeeze together. It was great when I had to cough, get in and out of bed and chairs. They used to give heart patients a little pillow. Ask for the heart hugger harness if they have it.

    Rehab will have you up and walking in ICU. This is very important. Walk as much as you can tolerate. Be sure to communicate with the rehab nurses and PAs. They need to know when you need a break, or if you have any pain.

    Don

    ------------------------------
    Donald Kanipe
    Beavercreek OH
    (937) 429-1257
    ------------------------------



  • 13.  RE: Heart Valve Replacement

    Posted 03-27-2018 11:04
    Mary,
    I’m sorry to be this late responding to your message but I have had some issues getting on the site. Anyway, since you have had other reply’s with very good info I will be short. I know you will be better off and feel better with more energy following your surgery. Please don’t worry about the tubes and other things done in surgery. Instead think of how much better you will feel when this is over. I truly feel that in a couple of months you will look back and say it wasn’t as bad as you thought it would be. The one thing, as others have told you, please do Cardiac Rehab. That is the best thing you can do. I had 5 way bypass surgery in Jan 07 and after CR I joined the Y and go there 5 mornings a week. I am 74 years old and my heart condition has not stopped me from doing anything. I feel you will have the same results if you do as instructed by the medical team. I will be thinking of you and wish you and your family the very best. In closing I will let you know that my wife of 50 years is from New Britain, Conn.
    Tommy Broughton
    Chapter 28, Richmond, Va.

    Sent from my iPad




  • 14.  RE: Heart Valve Replacement

    Posted 04-02-2018 21:10
    Hello to all that support me!

    It's Monday night.....I leave tomorrow  night for Yale for my surgery on Wed. morning...

    Last night, it all hit me hard, and I so appreciate all the responses and support I have had, as I go back to it for comfort and reassurance.

    I am dreading leaving my children...I am dreading all of it...

    Thank you for thinking of me, supporting me, and lifting me up in thought and prayer..I hope to write post-surgery, and I hope to be as supportive to others as you have all been to me!

    With love and gratitude,

    Mary :)
    xo

    ------------------------------
    Mary Sirianni
    Teacher
    Weatogue CT
    ------------------------------



  • 15.  RE: Heart Valve Replacement

    Posted 04-03-2018 03:54
    Mary,
    Sending thoughts and prayers and love and every god wish for a super-speedy recovery.  Please let us hear from you,
    Francee

    ------------------------------
    Francee Levin
    Columbia SC
    (803) 788-1207
    ------------------------------



  • 16.  RE: Heart Valve Replacement

    Posted 04-03-2018 06:22
    Mary,
    I'm sure a member of the mended hearts chapter which visits patients at Yale university medical center, will visit you after surgery.
    Good luck,
    Vic Fabry, President
    Mended hearts of Morris County

    --
    Vic Fabry
    MHoMC, President
    Greylock Group, CEO





  • 17.  RE: Heart Valve Replacement

    Posted 04-03-2018 14:55

    I had a double valve replacement done in December of 1988. At the time I was 41 years old. Tough recovery all went well, my children at the time were a 5 year old and 2 year old twins, they are all in their 30's now. I had the surgery re-done 8 years ago and I am now 71. Keep the faith and stay positive, you can get through this with all of the new techniques. Your recovery will go good the more you walk the better you will feel. My wife was trooper, and I think is was tougher on her than me.

     

    The best to you Mary !!!

     

    Tom Seiter

    Mended Hearts

    Chapter 126

    Scottsdale, AZ.






  • 18.  RE: Heart Valve Replacement

    Posted 04-03-2018 16:33
    God speed Mary. Just relax and let it happen. We are all thinking of you and sending positive vibes.
    Richard Short 
    Chapter 395



    Sent from my Samsung Galaxy smartphone.





  • 19.  RE: Heart Valve Replacement

    Posted 04-03-2018 17:47
    THANK YOU everyone! Leaving for New Haven now, and I am deeply grateful for all of you and your support!

    I feel privileged to be in all of your company!!!!!!!

    xoxoxo
    mary

    ------------------------------
    Mary Sirianni
    Teacher
    Weatogue CT
    ------------------------------



  • 20.  RE: Heart Valve Replacement

    Posted 04-04-2018 07:27
    Mary,

    When I went in, I had one of those digital picture frames with me. I had loaded it up with a bunch of family photos. The nursing staff had it plugged in for me in the ICU and the regular room. It was good to wake up and have my pictures.

    Best wishes and as we say on another forum, "prayers up."

    Don

    ------------------------------
    Donald Kanipe
    Beavercreek OH
    (937) 429-1257
    ------------------------------



  • 21.  RE: Heart Valve Replacement

    Posted 04-04-2018 15:09
    Mr Kanipe's offer is thoughtful but better yet Mary you might just want to take photo's of your own family to enjoy. Of course if it's like mine, they were there in person the whole time, day in and day out, hour after hour, they even slept there. I had to go home to get away from them.

    Good luck and let us know when you are back functioning

    ------------------------------
    Warren
    TucsonAZ
    ------------------------------



  • 22.  RE: Heart Valve Replacement

    Posted 04-24-2018 20:28
    Hi Mary - good to see your note.
    I bought one of those plastic pill organizers at CVS to put in all the pills and schedule the daily dosage.
    I'm sure that Walmart or other drug stores carry them.
    I fill it up every Saturday night for the week's drugs.
    Helps me remember what I take and when.  Sometimes around noon I wonder, "did I take my
    morning pills?" and I can check the plastic tray to make sure that it is empty for that morning's pills.
    Rehab is super and I hope you can get into their program.  
    Sounds like you are having a good recovery ---- keep it up!
    Judy

    ------------------------------
    Judy Rose
    Brewster MA
    (508) 240-7984
    ------------------------------



  • 23.  RE: Heart Valve Replacement

    Posted 04-25-2018 06:10
    I don’t have too many pills but have 8 of the weekly pill boxes - 4 for AM and 4 for PM. I fill the once a month.same as your experience, saves me time and confusion.
    Joe J Ft Myers #312
    3X CABG Aug 2007
    Cryogenic Ablation 12/20/2017




  • 24.  RE: Heart Valve Replacement

    Posted 04-22-2018 11:23
    Hello to all the wonderful supporters of mended hearts....I just wanted to touch base. I had my replacement and stent on April 4th, got back home on the 9th....was doing ok....but yesterday for the first time, I almost felt "normal" and overdid it I guess. Had a bad dizzy spell that lasted about 20 mins. I had also forgotten to take my beta blocker. Needless to say, I got re-admitted yesterday for testing to rule out fluid around my heart. I guess there's a little but not enough to justify extraction. So, my beta blocker dose is being increased and they are also trying to get my INR up. Wow....this really is a process! I think I was so focused on pulling through the procedure itself that I had given little thought to recovery! I'm glad to walk this ",path" with others because it can be discouraging. I almost felt like a "normal" mom again yesterday, and here I've landed myself back in the hospital for a few days. Thank you to everyone and I hope everyone is doing well on their own respective journeys!

    ------------------------------
    Mary Sirianni
    Teacher
    Weatogue CT
    ------------------------------



  • 25.  RE: Heart Valve Replacement

    Posted 04-23-2018 02:36
    Congratulations.  You're well on the road to recovery, and I've been waiting to hear.  I hope you'll soon be able to start Cardiac Rehab.  That's been a huge help for me, and I think it will be for you as well.  The first thing you learn is "listen to your body."  Keep up the good work!

    ------------------------------
    Francee Levin
    Columbia SC
    (803) 788-1207
    ------------------------------



  • 26.  RE: Heart Valve Replacement

    Posted 04-23-2018 07:32
    Mary,
    It is so good to hear from you. I have wondered how your surgery went and how you are getting along. Don’t let this little bump in the road get you down. Your life will get back to normal. It does’t happen over night but you will get there. Sure, you will have to make some changes in some things but they are changes you can live with. That is the way you have to look at it. One change for me, following my bypass surgery 11 1/2 years ago, is to take my medicines everyday. After a while I got into the habit and now it comes naturally. My wife also helps. Everyone of us who lives with heart disease has to adjust to these changes to be successful. I’m sure you are a great mother and a good teacher. This is what you do and it is your life. Your medical team does their job everyday and and I’m sure they are good at it and know what they are doing. Put your trust in them and follow their instructions and they will get you through these little bumps in the road. Again, when the time comes please do Cardiac Rehab. As before, I wish you the very best. You will get there and enjoy good times just as you did before this ordeal.
    Tommy Broughton
    Mended Hearts, Chapter 28
    Richmond, Va.

    Sent from my iPad




  • 27.  RE: Heart Valve Replacement

    Posted 04-23-2018 11:29
    Hello Mary!

    Glad you are doing better. Yes, the recovery is the part we have to really be patient with yet proactive. But the medicines are so very important. You may want to consider having a small notepad and logging your meds each time you take them so that you will know if you are missing a dose. I will become routine... I have been logging my meds in a tiny little spiral notepad for almost 5 years .... since my CABGx3.... and there are lots of days when I look at it to remind myself if I have taken my medications!


    Live a heart healthy life!







  • 28.  RE: Heart Valve Replacement

    Posted 04-26-2018 10:16
    Hello Mary,
    Do not let these little set backs bother you too much. 3 steps forward 1 step back! It will happen sometimes and there may also be depression at times. That is all normal during the healing process. Like others ha said, a daily dose pill holder, or note pad, or even your cell phone reminder. Find a method that works best for you to remember to take your meds. After a while it will be routine like brushing your teeth. Be sure to remind your doctor to refer you to rehab as soon as you are able. You will feel better faster with rehab. Also don't be shy about sharing what you have been through with others. You will soon be helping others feel better about their recovery. Best of luck and look forward to seeing your progress.
    Richard Short
    Chapter 395
    Certified Visitor



    Sent from my Samsung Galaxy smartphone.





  • 29.  RE: Heart Valve Replacement

    Posted 10-27-2020 05:21
    It is important to remember that not all patients with severe aortic stenosis suffer obvious symptoms, however on more in-depth questioning, it is often found that the patient's activity levels have declined over time without them realising.

    ------------------------------
    Aliston Andy
    Lahore ACT
    ------------------------------