Hey there! I'm 31 and had my 6th OHS almost 2 years ago. Still to this day I get a little chest soreness if I lay in the same position for too long. I opted not to do cardiac rehab after surgery and I really regret it. In fact, at my post op appointment next week, I am going t ask the Dr. if I can start now. Better late than never, right? You'll feel normal again... I promise. Us heart patients have a "new kind of normal" I like to call it. It may be uncomfortable or weird for others, but it woks for us. Good luck!!!
I happened to check in and saw your update. My year milestone will be June 18th, and funny that things are just now starting to hurt. My leg is still numb most of the time, but at least I can feel the side of my head and neck again. Never bothersome, only felt weird for a long time.
The thoracotomy incision has started hurting just in the last few days (I assume just nerves finally coming back together).
My surgery was May 29,2012 and I still have some numbness in my inner thigh from where they did the heart-lung bypass pump, but it is not awful. I know what you mean by "new normal". My mitral valve repair was not 100% successful so I still have moderate regurgitation - better than the severe regurg I went into it with but definitely not the 0-mild regurg I was hhoping for. Anyway, I know my limits and when the fatigue gets to me I just have to let things go and rest. I hope the physical therapy helps with your shoulder and neck pain. You are in my prayers - I was a young mother of four 30 years ago and I know how tiring that can be. Take one day at a time, God's mercy is new each morning. Take care and God bless, Densie Kirchner
I had really bad pain in my shoulder that just kept getting worse for seven months after surgery. I finally had an MRI and was told my rotators cuff muscles were "frayed". It happens because of the position they put your arms in during surgery. I went to physical therapy for two months and it gradually got better. At about a year after surgery it was about 95% better. Still isn't 100%, but at least the pain is mostly gone.
Good luck to you.
My surgery was 5/25 so I think I'm 9 wks now...
My incision does not hurt, but it feels some days like it's glued real tight(which it was glued). Sometimes it is still hard for me to get comfy, especially in bed. A bit achy, but no real pain/pain meds.
I returned back to work at 7 wks, 2 wks ago. Week 1 I did 7:30-2 and this week I did 7:30-3. Next week I hope to be back to somewhat normal, 7:30-4 though I am planning to do 8 hrs on two days a week and continue with cardiac rehab.
If you have the option to go back every other day, 1/2 days or part-time I would recommend that. I did notice a difference. Being home first couple of weeks I napped twice a day, then once a day and then I was able to go at my own pace. At work things are usually a bit more fast-paced.
Hope you have at least enjoyed the summer with your kids and got to use the pool/stay cool. Take care.
I returned to work yesterday (8 weeks post op), but for 1/2 days only for the next 3 weeks due to the seroma in my groin that is painful and seems to get larger when I sit for extended periods. Four hours was enough for me as the seroma gets painful with extended sitting and I have a desk job. Even without the seroma I think I would have pushed for part time for at least the first 2 weeks, just to ease back into the full time schedule. Just talk to your doctor about it, I am sure he or she will agree that getting back into work gradually is probably, especially if you are still fatigued and not sleeping comfortably at night. I am praying for you. Take care!
It was 3 weeks post surgery before my Dr said I could sleep on anything but my back. My scar area was sensitive for quite a while, I could feel a "pulling" when trying to do anything, you just have to be patient there, something I am not so good at
I had a thorocotomy - incision between the ribs and I had to sleep in a recliner on my back for the first 2 1/2 weeks after surgery. Once I migrated to our bed I had to use lots of pillows and still slept on my back for another week. I was not able to sleep comfortable on my side until about 4 1/2 weeks after surgery. As Deb Z said below be patient - everyone heals at a different pace. Hang in there you are doing great! Take care. Denise K
It took me a good 2 and a half months before I could sleep on my side. It was just too painful. I would read about all these people that did it at three weeks out, and I couldn't believe it. Just be patient.....it will get better. Everyone heals at a different pace.
Hi Chrissy, I came across your journal tonight while checking on some of my friends on HVJ and was compelled to write to you. I had my Mitral Valve repair on 5/29/12 and am now 7 weeks post op and feel great - it really does get better! You have a lot on your plate being a young mom - can't imagine going through that with young children - what a brave woman you are! I just wanted you to know I am thinking about you and praying for you as you continue to recover. Take care and God bless you and your beautiful family. Denise Kirchner
Hope you're having a good morning. I feel as you do; I got a bracelet thru a company I found online: Lauren's Hope. I got it as I don 't want my son to have to answer questions should I become dizzy or pass out in the grocery store... I simply put on it mitral valve repair, my ICE #, cardiologist # and med allergies. Hope that helps. Stay well, Kate R
Chrissy, yeah It's me again. Paul G.. I felt the same way for the first three weeks. But I started doing some walking and such and that walking really helped me. Hopefully you will be like many here and you will get to a day that you will feel completely different. I hit that day about 4 weeks out from my surgery. It was weird. I woke up one day and went downstairs for breakfast and suddenly realized I made there without having that searing pain in my right side where they spread my ribs for the robotic arms and camera. So a little more patience. Just remember, and I think I already said this, Your body just went through a pretty traumatic event. give it a little time to get back liking you. BTW I was patient and have the ring and like Nacy B said, no one ever mentioned the ID bracelet to me either. I don;t suppose it would hurt to wear one, but you should be healed up in a few months. I'd be worried that bracelet would make feel like I wasn't well. It would be like a crutch or something negative to remind me all the time about it. I can tell you in a few months you won't even think about it much.
And another thing. If the incision that your having an issue with is a lower groin area one, mine is still a bit sore two and half months out. But it is getting better and most of the numbness at that site is gone now. Patience Chrissy. Patience. Take it easy. Three weeks is still early in your recovery. I know you want to be all better like today, but that ain;t gonna happen. I was still laying on the couch most of the day at three weeks. I'm still rooting for ya Chrissy. Be healthy, be patient, be careful, And God Bless.
Now go lie down. take a nap. dream happy thoughts.
Just thinking of you this evening.. I hope you are having a good night. I am glad you got through the surgery and are now home.. I know.. it is tough.. but it does get better.. slowly.
Hang in there; you're in my prayers. Best wishes for your recovery, Kate R, fellow regurgitator..no more!
Hi Chrissy, Get back on your pain meds for a while. Everyday will get better with the next. I know this heat doesnt help with anything but just try and stay cool. Just keep telling yourself I can do it. Take care and here is to better tomorrow.
For the long haul
Chrissy, I know what you mean. I am approx 2 weeks out from my AVR, and it feels like I am rcovering from a "train wreck". Take it slow,use your meds,walk, all the boring stuff they tell you. I have limited energy,but find small frequent "meals", or sipping protein drinks helps. Hang in there!
Maybe you have a somewhat lower tolerance for pain than a lot of other people. Whatever it be, however, don't try to do without those meds when they are still there for you to take. So I say "ditto" to all the others who have expressed similar sentiments.
I don't want to be unnecessarily negative about this, BUT be thankful for what you don't have: the "oxygen problem", SOB, AFib, all kinds of other stuff we read about from HVJers all the time. Pain will ease in time, and you will be good as new, without all those other complications. So, keep your head up and be patient! You have so much going for you in terms of recovery!
I had my surgery right after you and so I can relate to alot of what you are saying. I had to stay a whole week in the hospital after surgery (mini stern) because my oxygen level wasn't high enough. I finally talked them into letting me go home with oxygen and now I am off that. Never had any pain to speak of and not on pain meds but still that awful "struck by a truck" feeling and no energy......everything is an effort. Like you I just want to feel better NOW and I'm not being very patient about it. I know I need to walk more but I am limited to walking in my house as my yard/grounds are very uneven and hilly.
The big plus for me was that my best friend stayed with me the whole week at the hospital (NYPresbyterian has guest quarters) and made sure I had some good food and of course, company.
I think the sadness you feel is normal as I felt it too, but the body has been under some tremendous stresses and traumas. The best medicine for me was a visit from the legendary Mitch Friedman. He should be our roaming goodwill ambassador!!!!
I do see slight improvements each day, so hang in there Chrissy and don't let the pain get ahead of you.
Great to finally hear from you Chrissy!
It's not an easy road, but you can do this. Have you been doing daily short walks? I think this really helps. Our energy has been zapped from the surgery and meds and you need to rebuild yourself. Also be sure to drink plenty of water. It will come, just be patient.
What Jerry said. Pain slows you down and makes your experience unpleasant. If you knock it down you will move more. Moving more helps you heal quicker. Healing quicker will make the pain go away. The pain going away will let you get off the pain meds. -- DVB
I was so happy to read your posts. For me, reading your posts meant that you went through your sugery okay, and that you were functioning fine. I am sorry to hear about your pain and the discomfort you had to endure with no AC. And I completely feel you on wanting to have your family around and in the room with you. When I was in the heart care unit for a week in Feb. my husband made me feel as though it was a chore to get the kids ready and come up to see me or boring to just sit with me. I couldn't hold back the tears. I don't really think I have forgiven him for that yet either. So kudos to you for how you handled things. You are so strong. Speaking of strong, I hope this letter finds you home and happy and resting well. Now that life has finally slowed down, I realize how much I miss seeing your smile at the Girls Scout meetings. :)
Clarissa says hi and to get well soon.
We Love Ya!
Been a coupe of days. How are you feeling? Any better? Pain still bothering you as much as before? I hope your doing better. Tried any walking yet? Questions questions...yes I am a pain in my own right.....Ha!
Chrissy, I hope you are home and am looking forward to your updates. The recovery road is tough the first week but it does get better! Hang in there and stay determined, you made it over the mountain! Thinking of you!
I sure hope you're feeling better and that you're home. I'm so sorry about the AC problem at the hospital and your pain.
I hope each day is better than the one before it.
Thinking of you and keeping the you and the other HV patients in my prayers.
Like Lisa says, keep your chin up. You'll be home soon and resting. Everything gets better in a few days, so just muster up all your strength and just think good thoughts.
I'm still praying for you. God Bless!
BTW My wife bought me a bunch of get well balloons...That never happens either. LOL.
Take deep breathes to get your oxygen level up. It works immediately. They had me on oxygen only when I slept because my o2 level would drop when I slept and breathed shallowly.
Sounds like we have the same holes.
Let me know if you need a recommendation for a good bra...I think I found one that works for my incisions.
Yeah, it's good to hear from you. I am doing okay except low blood pressure. I saw my cardio today who will be sending me to cardiac rehab. I am seeing the surgeon on Monday. Ha my hubby never gives me flowers either, but he had them waiting for me at home. It is amazing how everyone really steps up when something like this happens. I was on oxygen until the day before discharge and I had blood sugar issues but no med history of diabetes. Keep the posts coming and keep up the good healing. Karen
Just checking in to see how you are doing. Looking forward to your next post. Let us know if there is anything we can do to help you, even if it is just listening to you vent from our various locations.
Take care and feel better.
No sugar coating it Chrissy. It ain't gonna be fun and don't expect it to be easy. You just went through a pretty traumatic thing and your body will be hating you for it for a while. I tell people it took about three weeks for me to just get over the drainage tube pain. Let alone all the other holes they put in our bodies. The best part about it is you can whine and no one will make you feel bad for doing it. Just keep a positive attitude and keep in mind this was all for the better. You have a family that depends on and loves you so you need to get healthy not just for you but for them. You are lucky to have kids and husband you can lean on. So, do it. Tell them it is pay back time and they damned well better do it. LOL. I love my wife even more for putting up with me those past few weeks and the days in the hospital. Now it is time for you to get a little compassion and love back. Take the pain thing one day at a time. It will make you stronger. Try not to laugh for a few days. Or sneeze. yikes the sneezing will make your brain jump. I used to sneeze. Then I would do the Oh-my-God thing, then start to laugh at it all. No way was I letting that get to me. I rushed too much to do the walking thing when I got home. Take it easy the first few days home. Relax. Listen to some good music. Let your hair grow back. For crying out loud be careful and don;t try to go clean the house until you are way better. Yeah I know I am scolding you before you even did anything. But I read your whole journal and you are a worrier. Worrying about stuff is a negative action and you need to keep positive. Do it. Keep positive dammit.......
I am going to keep coming back here to check up on you. So you better be good.
BTW...Glad you made it through the operation that you were sooooo worried about. Aren't those surgeons great? Now follow directions, and get better.
Good to hear the surgery is in your rear view mirror. Get through your hospital stay and then go home and recover. You need to take charge of your recover, especially if you live with people for which nurturing does not come naturally. Tell them what you need and appreciate what they do. Try your hardest to ignore the rest....hard as it may be.
Hope your recovery goes smoothly.
Christy, good to hear from you this quickly. I would get o them about the pain and they should try different approach if the current one isn't working for you.
Many of the docs, cardiac nurses, and past past patients i have spoken with have all said, "don't try and be a hero with the pain meds, take as much as they will give you the in the beginning". I then explain I have no intention of that whatsoever..
Hang in there Chrissy and if your pain is severe, ask for more meds. They should be able to keep it at a tolerable level. If you have a "pump", PUSH THAT BUTTON! It will not let you overdose and that is what it is there for. Only you can judge your level of pain. Welcome to the "other side" and I pray that your recovery will be swift and complete.
Linda Dixon, AVR 3/13/12
Hang in there. My mantra, over and over, was, "Jesus Mary Joseph pray.. help me walk this living day.." This prayer was told to me by an elderly friend who has endured 11 surgeries... and is a remarkable role model for me. The simple prayer soothed me; I hope it helps you. One hour at a time.. you are in my thoughts and prayers today. Kate R :)
yeah, you go girl! Sorry about the severe pain. I awoke from the surgery almost immediately when brought to ICU. I tried to talk with the breathing tube (though going in I knew I wouldnt be able to). I motioned to my husband/family to give me a pad and pen. I wrote 'so much pain, is this normal' 'get the nurse, pressure', So at first you will feel this, but if you are as lucky as me your pain level soon won't be more than a 5. I am so glad to hear from you. Try to get some rest...My surgery was at 7:30 on Friday and at 7:30 Sat night I was wide awake tired and uncomfortable so I burst in to tears due to no sleep. The nurses gave me something to relax me and even held my hands. Get some much needed rest. Even home 2 weeks I napped 2x yesterday. I bet you can't wait to see your kids :) Karen
I will be thinking of you and praying for you tomorrow. You can do this, and you will be surprised how much better you will feel. Stay strong and take it one hour at a time. Be positive about your recovery, your whole life is ahead of you and waiting!
I have been thinking about you and remembering how incredibly tired I was before also. I think what everyone wrote is true...a combination of your body not getting the proper blood and oxygen and the stress. I can honestly say that my groin incision was a piece of cake. It was probably the biggest non-event of the whole process...better than the cath or TEE or any of the blood draws before or after. I know the tears are coming easily right now, but try not to focus on that too much.
I will be praying for you tomorrow! Try to relax and know that this whole thing will eventually get you feeling much better than you are now!
Hey Chrissy, Stress can make you very tired not to mention the good ole heart not working to well. You will do fine and soon you will be in recovery. Everyday will get better. And I hear dont forget the chap stick. Good luck to you and God will be with you holding your hand. Prayers will be with you.
For the long haul
I was really tired right before my surgery too, and I didn't really know why. Maybe the stress has something to do with it. I'm sure the bad valve isn't helping either. I just had a constant urge to go lie down all the time. It went away after surgery though, so you will have way more energy when you are done.
Godspeed and good luck on your journey!
Your are worried so stress is tiresome, Also do you leakage with your regurgitation? Mine went from a 0 or 1 to a 4+ from Feb - April/May and sometime between May 7th and surgery May 25th the valve itself ruptured. Remember your heart and lungs carry oxygen to your entire body including your brain so any degree of heart failure is most likely going to make you tired. K Campo
Hi Chrissy, I was really tired the last week or so before my surgery. Just a couple of days and you'll be all fixed up and feeling better. Try to relax and enjoy your family and focus on much better you'll feel afterwards.
Praying for a stress free and speedy recovery.
aortic valve and partial aorta replacement
I wore my own slippers. That was it! I too cut my hair so I would not have to deal with it at the hospital or at home. It was a good decision. I packed comfortable clothes for the trip home. I went with much more but most everything stayed in the suitcase. Still, there was comfort in knowing I came prepared.
Are you having your surgery in NC? I will keep you in my thoughts and prayers.
My name is Kate and I had my repair on 5/14. It is scary, hard, difficult - but you will get through it and be well. Hang in there - take it one hour at a time those first few days. Do you like music? I listened to 2 piano CDs (with my headphones) over and over the first 2 days... It helped me stay calm and it blocked out the "hospital noises." You will be in my prayers on the 8th; just think how great you will feel with your children once you get your heart fixed... You will have more energy for more fun times ahead! Best wishes, hang in there.. It is hard but it will all be just fine. Kind regards, Kate R
My thoughts and prayers are with you and your family. Here's the word for today-
"In all things, may Jesus be the strength of your heart, the center of your life, the guide of your future, the joy of your soul".
I didn't see any bottles of Chardonnay there, but docs did say I could have a glass a day and I have prob done so 3 of the 5 days I have been home. Sounds like you are packing the right stuff. I brought some spray dry shampoo which I never used as the nurses/aides washed my hair daily until I could on my 2nd to last day there. Also only was able to use the robe and pj's around that day. Not sure if I told you but you can gain a lot of fluids(I gained 20 lbs and still have 6 more to lose) so bring comfy sweats to go home in just in case. I used my slippers for the entire stay. Not much reading but did use my cell and laptop too. I guess a power strip is a good idea, but I found no issues with enough avail outlets to charge the devices. Sounds as if your spirits are picking up. I am glad. Karen
Im sorry as it sounds like you are having a tough time with all this. Agreed, you need calmness right now, not chaos and your family and friends should be well aware of this. I will tell you the same advice a friend told me. You need to pull yourself up and be as positive as possible (remember your kids and how they view all this-they too may be scared). You need to go into this strong for yourself to heal better. Also I have been told that depression can set in after the surgery so we want to kick this in the but now! I know you can do this. I will keep you in my thoughts and prayers. I have only been home from the hospital for 6 days now and I am very thankful my valve was able to be repaired. I am taking things slow(walking short distances a couple/few times a day), dishes, cooking small meals and light dusting. I can go up the stairs once okay, but twice is tough still. Mostly I am enjoying be able to see my son off to school in the am and be here when he comes home. Focus on the simple joys in your life today and know that when you come out of surgery in a few days you will appreciate those so much more. Karen Campo
It's going to be okay. Enjoy that time with your kids/family and friends now, but remember there will be plenty more to come. I am one week post-op(mitral valve repaired last Friday). If you want to chat offline for any moral support you can look me up on FB or mail me @ email@example.com. Hang in there and try to be strong, if not for yourself for your kids :) Karen
This is a big deal. It is a lot for anyone to have to go through. It is completely understandable that you might feel depressed. It seems that this website is really helpful for patients who have to go through this type of surgery. I think that it is kind of like going through grief or loss and you have to travel through the 7 stages sometimes bouncing back and forth a few times. Just remember the stage after depression is usually an upward turn. http://www.recover-from-grief.com/7-stages-of-grief.html Remember, you are not alone.
Steven Dean's Mom, Linda
God Bless you and wishing you a speedy recovery ........
Hi Chrissy. I had my mitral valve repaired a year ago April. What an incredible world we live in where our hearts can be repaired! Physicians, nurses, and researchers giving themselves to make it possible for valve repairs to be so safe and routine. Thousands upon thousands of patients over the years facing the fear and unknown to generate the experience and knowledge that can save us. And then boom, it's our turn. Choosing this surgery is a gift of love to your family. Peace be with you, brave woman. -- DVB
Hang in there! Had MV repair last September with two kids (7 & 9) at home. I'm 43. There are some really special moments with your loved ones coming your way along with the scary stuff. For me the calm before the surgery was more about fear and retreating into quiet acceptance of the situation. I think it's a little lonely too (this site helps with that)! I won't ever forget and really treasure the first time I saw my husband and kids visiting in the hospital and the clarity that the experience brought to me regarding life's priorities. Please don't hestitate to reach out to me if you need a fellow MV patient to lean on. Best wishes to you and your family! Debby T.
It is not an easy thing to deal with and everyone does so differently. I had some calm moments and times when I kept myself busy but I also had a lot of depressed moments, including crying alone in the pre-op room. Like many people say the waiting is the hardest part. You will get through it.
Chrissy, I am much older than you (63), so I can only imagine how you feel. But just try to remember that even though this is a life altering experience for you, for your surgeon it is just another day at work. You will survive the surgery (mortality rate last year at Cleveland Clinic for mitral valve repair was 0! That's right...ZERO). You will be fine. It will not be a walk in the park...but you are a woman...a mother...you can do anything! I will keep you in my prayers and please try to remember that you are doing the hardest part now...waiting.
Linda Dixon, AVR 3/13/12
Hang in there Chrissy. I'm sorry about the depression you are going through in anticipation of the big day. I'm just so grateful that we had modern medical techniques that can save your life, and keep you around for your children. Remember the Angels that you have that will be in your company, today, and the day of your surgery. God will be working through the hands of your surgeon Hun. ((hugs)) Angela...look, I remembered to sign my name :)
Hi Chrissy, I just got done reading your journal, sorry I haven't responded before. Wow, you have had quite the ride, everything happening at a fast pace for you! I was in the same place, and foolishly thought "I" would never be the one that needed surgery. I thought people lived with murmurs all their lives and didn't even think about anything beyond that. My Dr. followed my murmur with yearly echos, and then it was every 6 months, and before I knew it, surgery was mentioned. I had the Robotic Mitral Valve Repair on April 25th, 2012 at Mayo Clinic. The repair sounds similar to how you describe yours. It's a lot to take in with such short notice, my thoughts and prayers will be with you. Put the negative things out of your mind, focus on the positive. This is the hardest time, the waiting and trying to take care of all of the little and big details.
I hope you find the time to take care of you with your busy schedule, mom's always put themselves last and that's not such a good idea.
You will do great and will recover before you know it.
Hi Chrissy, Wow I just read your journal. You have been through a lot of emotions. Dont let negative people get you down. I have that in my own family and it hurts, but I am just going to ignore them, that means it is 2 of my daughters. You will get through this with flying colors and then soar. You will be on top with a whole new life so dont worry about family members passing at an early age. My Dad passed at age of 63 with conjestive heart failure after going through adonomal anuersym 3 months earlier. But he had been battling heart problems for 12 years and his heart just wore out. I am 65 so I have outlived him with an anuersym and aortic stenosis/regurgitation.Things have changed so much for the better since the 80's. We are the lucky ones. You will do fine and God will be with you the whole way. I will keep you in my prayers with everyone else. Good luck to you and keep us all posted.
For the long haul
Just wanted to let you know I will be praying for you and I wish you the best possible outcome of your surgery. I will be having my aortic valve replaced on the 12th so I am in the process of trying to get it all togethernow also. But, wow, you made me tired out just reading your schedule.!!!! Sounds like a few days in the hospital will be a nice break for you.....well almost:-)
Anyway, know that you have a great support team here and lots of people to wish you well.
Blessings to you,
Joan Davenport AVR 6/12/12
You're getting close and you will do great. I had my mitral valve repaired on 3-13-2012, and have felt much better since my operation. Waiting is the hardest part, and it's best that you have plenty to do with work and family. My thoughts and prayers will be with you on June 8
- Jim Smith
Dont let one bitter person ruin your day.
Keep positive thoughts, remember that you have many people here praying for you and wishing you the best.
Many blessings on your upcoming surgery :)
Chrissy, Sending good thoughts and prayers your way. You will do fine. I had sternotomy to repair mitral valve about 5 months ago. The pain is managed and tolerable, the surgery has huge success rates. We are the lucky ones, we have something unlike so many other diseases that can be repaired and fixed. I was home alone at 2 weeks, driving at 4 weeks and walking 2 miles a day. I am 54. I am thankful that I can go on to lead a long full life. You will do great too. I know this to be true!! Try to not worry. Read other's journals for inspiration, info and advice. Lastly, don't let one negative E-mail out shadow all the positive ones. You will do great and I look forward to reading your posts of recovery. Janis Kielbasa
Chrissy, You are going through a rough road right now but I know in my heart you will recover and have a beautiful life ahead of you with your family. Please have faith and remember you are never alone. There are many angels above watching over you as well as angels among you here on earth. We will definitely keep you in our prayers and if you do remember when in school we were taught saints intercede for us in certain particular requests but St Joseph hears ALL our requests. May you find strength in your faith and stay positive. God Bless you and be safe......<3
I had my aortic valve replaced on 2/6/12. You will feel so much better after you have your surgery. It is a blessing to know that there are surgeons and technology that can help us lead normal lives again. Waiting is the hard part, but you have the love and support of your family to help your through it all. My prayers are to you and your family. Take care.
Hi Chrissy, I am a Carolina girl as well...little South of you, but Carolina non-the-less. I had aortic valve replacement in March and my biggest piece of advice is this: Keep the positive attitude!!!!! If you are knowledgeable about your condition and the surgery to repair or replace your valve, if you have carefully researched and chosen an experienced mitral valve surgeon that you are comfortable with and have decided on the place and time....don't let this ignorant jerk get to you. I can promise you that although I did not believe it when others here told me...you are doing the hardest part now...the waiting. You will be fine and so will your family. We just have to pray for people like the jerk!! Hang in there...it does get easier and better!
Don't let the rudeness of one person overshadow the goodness in all the others, we're ALL in this together, I will continue to pray for you and ALL of my HVJ family, we all have something in common, and that's the blessing of a great GOD that has blessed us with gifted surgeons that can heal our heart, while he contnues to heal our soul.
WHOAH! That was some e-mail you got. I'd write that guy off my Christmas Card list for sure!! Sheesh, what a jerk! Like you said, concentrate on all the good people, friends and friends-to-be, who are rooting for you.
I am also a parent of 3 young kids. Mine are all boys 6 or under.
I just had my surgery on 2/20. I had the same fear and knowing my kids need me. I every is unique but everything went ok. I had a little bit of an idea of what to expect as my youngest sonn had open heart surgery at 6 weeks old. We are both doing great and he's almost 2.
Read my journals as you may find some useful stuff in there and don't hesitate to ask any question you want.
Just discovered your journal and guestbook (thanks to Selma Kaplan) and have to write to you as well. I hope my input is helpful to you.
First, I had to look up Knightdale, since it isn't anywhere near Charlotte, so I wasn't familiar with the town. Seeing you are near Raleigh, I am wondering if you might possibly be going to Duke for this?? You didn't mention the "where" unless I missed it. Regardless, there are good hospitals and wonderful, experienced doctors everywhere these days! I am sure you are in good hands. I think the less invasive approach will hasten healing, and that is a good thing. And repair is such a good option for those who qualify for it, and you do! It is also good that you are young. I am 69, probably the oldest person journaling right now, and have to deal with certain aging factors such as not being able to opt for the less invasive approach. But you can!
You also mentioned that your mother died quite young, but, remember, she DIDN'T have heart problems. So there is no "heart" connection there, if you know what I mean.
What they say about feeling more calm as the big day approaches seems to be true. I am eight days out, and it's easier than it was at 38 days out. Also, my doctor prescribed a medication for anxiety, and I have used it a few times to fall asleep at night. Perhaps you can ask your doctor about something to help you. Try to vary your activities during the day, have fun with your children, talk on the phone, have lunch out, things like that. It all helps us to dwell less on it.
And don't forget the tremendous power of prayer, directly and through your friends and loved ones who are praying for you! You can add my name to that list!
I had MVP with severe regurgitation which was diagnosed this past January. I had a mitral valve repair procedure on April 16. I am 52 years old, married with a 3 year old son (who is the love of my life).
My concern was the same as yours, someone else will be beating my heart.
You can't do anything about your thoughts but you owe it to yourself to have a positive attitude.
I got down on myself at the expense of my wife and son. Yes it was still the number 1 thought running through my head.
I was able to subdue my thoughts until the morning of April 16.
To FF to today, I am surprised that I am doing so well. Yes, heart surgery is the greatest assault on the human body, and I feel it everyday, but am happy that I did it (and it's over).
Hope you will take some comfort in knowing there will be a lot of people thinking and praying for you. You are truly one of the sweetest people and I am sorry you are having to go through such a scary experience. Come June 8th, your doctor will be able to confirm what we already know about you - that you have a heart of gold. Love, Jo Rozier
First and foremost it is a good thing that you know what is causing you not to feel right and that you have made plans to remedy that.
While I was told probably in my early 20's that I had a murmur at no time, until this Jan, did I find out I had MVP with regurgitiation. At that echo I had no apparent valve damage, but now with similar symptoms(short of breath walking and stairs) and fluid retention after a visit to the ER a couple of weeks ago I found I was in severe congestive heart failure and a repeat echo showed a 4+ leakage had occured between Jan or Feb to May. I did not have the years of being monitored as you had and am now faced with open heart surgery on a fast fwd basis. I am going in this Friday. I can relate all to well of your fear of the heart being stopped and using the bypass machine. That and the breathing tube freak me out, the scar isn't even an issue in my mind. I am not ready to go anywhere yet either. My family needs me too. We need to keep upbeat for them and think positive thoughts. I know this is not easy. I am finding that keeping busy and communicating and visiting with family and friends is helping a lot. Try to keep your chin up. It's going to be okay. It has to be. Karen
You have come to the right place, and the other site Selma mentioned is great as well.
Any question you can think of, ask...Someone on here will have the answer (or know where to point you in the right direction).
Everyone on HVJ has had the same concerns, questions, and feelings, so know that you are not alone.
I am on deck for the same procedure and am also 36, so we are in the same shoes. Read as much as you want and inform yourself on what to expect. Understand one thing that really helped me, what the world class surgeons and teams can do is truly a miracle and that "They do this EVERY DAY"!!
Hi and welcome to this wonderful site! I had the same exact diagnosis and the same exact repair just done 4/11. You will do great!! One thing that really helped me was having complete confidence in my surgeon and his team. You don't mention who yours is, but make sure they have done thousands of your exact repair. The peace of mind and trust are invaluable.
For me the nervousness got less and less as the day approached. I hope it's the same for you. There are so many success stories of people who feel fantastic on here, that I actually started to get excited to get it over with and move on.
Make sure you read Adam's book and ask lots of questions on here. I'm not on as much any more, but I do try to "pay it forward" to all the people waiting because the support I received from other HVJ patients was amazing.
Yes, what we have and have to go through is scary, but think of it this way: the doctors can FIX you. That is a great thing!
Welcome! We've got several wonderful women from the Carolinas here and I suspect they will be checking in. First of all, every single feeling you are experiencing is normal and we've all been there. I'd be a little curious about you if you *weren't* scared witless!
I have the same diagnosis and was operated on on May 11 by Dr. David Adams, a Mitral Repair Rock Star who's located in New York City. While it wasn't a walk in the park, it was a successful surgery and (so far) a relatively easy recovery. You have many things going for you, and maybe you can start by considering some of them:
You're young. Young is GOOD. I'm 60. Which isn't old, but it isn't young, either. Young people heal faster.
You haven't mentioned so, but I expect you're in otherwise good health? That's good, too.
You need this surgery in a time when, for experienced (and that's the key!) surgeons, the possibility of a successful repair exceeds 99%. Those are seriously good odds!
I'd encourage you to spend some time here at HV, and also here:
I learned a HUGE amount about our diagnosis and surgery there, and going into the surgery informed and prepared went a long way toward helping me cope.
You're gonna do great -- and we'll all be here for you.
This is Stephanie Davis my twins are in your son's class. Being the mother of 4 I understand your feelings. I feel that you are in good hands and God has given you children and a life to enjoy now and after the 8th. Be strong and my thoughts will be with you. Take Care.
I had an opportunity to read your blog this morning, I'm a 46 year old male that was born with a bicuspis aortic valve, I had been ducking doctors for the past 10 years after my last visit to a cardiogist, well back in March the ducking was over, I became very congested and had a very bad cough when I laid down, so my beautiful wife forced me to the emergency room (kicking and screaming) it was the best thing she had done for me, my valve needs replacing, I'm meeting with my surgeon Tuesday for the second time, and hoping to get a date set for the surgery, yes this is scary, but I know if I don't have the surgery my heart will fail, so with that being said I contnue to put my trust in the LORD, and know that he will see me through this, keep praying and keep speaking about it, this has been good therapy for me, I find myself speaking to someone each day, and it relieves my anxiety, this site is also very good, take care and keep in touch. I'll be looking for your blog.