Linda, thanks so much for all your posts. I have to schedule my surgery tomorrow with the Cleveland Clinic. I am very scared and having a terrible time taking this next step. Your journal has been blessing to me. Glad to hear how well everything went for you.
It is so hard to believe it has been a year since I read your journal from the "shadows"..... you drew me in...got me hooked...and gave me confidence I needed to "jump on that table" :) Some of the best advise I was given was to get that travel pillow! I asked for it as soon as they removed the vent...LOL...it was my constant companion for weeks!! You were a wonderful support (even when you didn't know I was here)....Thank you for not only myself...but for the countless others you helped along the way....Congrats on a successful year.....may you and Gilli share many, many more!!!!
Glad to hear you are doing so well!! You were so helpful and sweet as I was leading up to my surgery last April, and I am loving reading all the updates from you guys who went a month before me. I think I lucked out because you were an awesome and inspiring group to follow, both literally and on HVJ. :)
Linda the Tiger... CONGRATULATIONS!!! I was thinking of you on your big day. Sorry I am late.
I am so thrilled for you. You sound amazing. One year was a big day for me too. Glad I got to meet you and Tracie. Still tear up thinking of the great care from Cleveland Clinic. Just wonderful. Take care my friend. You and Gilli. Steph
Wow a year already. Seems like yesterday you were whining about the wait and how all of us got to go first. LOL!!! So glad you are doing well. Amazing how this consumed us a year ago and now it is like a distant memory.
Wow! It is hard to believe a year has passed. It will be a year on the March 22nd that I got the news from my cardiologist that I needed to think about surgery for my valve. You were one of the first people I talked with on HVJ and gave me so much encouragement and hope as I was making all the arrangements for my surgery in May. So happy to hear how well you are doing. Happy Anniversary to you and Gilli! I plan to post something this week so stay tuned for an update from the "energizer bunnie" - LOL
Yay Linda!!! Glad to hear that you are doing so well a year later! You and your journal were such an inspiration to me when I was preparing for my own surgery. Thanks for the great information and encouragement you give everyone on here!
I'm so glad to hear your good news. I've been thinking about you recently, as our mutual anniversary has been on my mind for the past several weeks. It meant so much to me last year that you and I "met" in the HVJ community before our surgery. It really helped to be able to share our plans, questions, concerns, hopes, and dreams. I do hope that we're able to meet in person sometime.
Your surgery mate,
Hi Linda and Gilli, Elsie is happy to meet you lol. Anyway Happy Anniversary and have many many more. I have missed talking to you. And still waiting to meet you. Now we could race up the hills at Clemson. Hope we can someday. I have been thinking about you knowing your day was here. I 'm doing pretty good myself. Just joined the YMCA, think it will be pretty good. Well until later friend.
LIfe is good.
Linda H and Elsie AVR 9/19/12
Crazy New Yorker....hmmm....So, I have been really bad about checking in on HVJ. I feel like I missed All Star day at the stadium with so many of my close HVJ friends posting in the past week or so, including you! So great to see you are doing so well. I mean with all your complaining pre-op, not sure we could have stood it if we did well and you didn't! LOL!!! Just kidding, you know I love you. And you know I am so glad for you and for all of us. Life is great. BTW, I am running a half marathon on 10/7. 8 months post op!!!
I am 3 1/2 months out and still on 12.5 mg of metroprolol in the morning and 12/5 mg at night. It does make my blood pressure go way low at times, but accordidng to my cardiologist the valve does not have to work as hard if my blood pressure is lower than normal. Mine has gone as low as yours at times and once in awhile I get dizzy, but all in all, not bad. My resting heart rate is usually in the high 60's to mid 70's so that is a good thing.
I will be starting my 4th week of cadiac rehab tomorrw and that seems to be going better now that the incision from my seroma surgery is has healed up.
Once I complete my rehab, I have an appt at CC on Nov 2nd for an echo stress test to see how my mitral valve is functioning with exertion. I have not had any trouble when exercising, so am hoping for positive results!
I too think of Cindy P quite often - she was such a positive and encouraging woman - I am sure her family misses her immensely.
Take care and keep in touch - glad to hear you are doing so well:-)
Linda, I'm so pleased to hear how well you're doing. Getting the meds right to manage heart rate and blood pressure optimally can be tricky, but it seems you have a good handle on this now. Take care, and Go Tigers!!!
Hey Linda, Glad you are back here, welcome back, I have missed you. Glad all is well with you and you're doing great. Just hope I will do as good as you have. The nerves have really been kicking in. Just be glad when I am on the other side of the mountain. I think I have been climing Mt Everest. It sure does feel like it.So until later friend
Glad you are doing so well. Not the worst things to be on a little low dose meds if you have to. Could be a lot worse obviously. Anyway, keep up the great work. Amazing how worried you were and now look at you!
I'm glad you're keeping yourself busy. Sounds like you know that you have to stay occupied. I have to admit, I would have laughed out loud had I been there when you pulled the "reminder" out of the mailbox. "Oh, by the way, we just wanted to remind you that you have a little procedure we have set up for you . . ."
Keep going down your path, and by all means, enjoy the snow! I may be in Georgia now, but I grew up in Wisconsin. Snow through a window from a warm comfortable room can be beautiful!!
How are you doing? I know yesterday was a difficult day with the news about Kelly. I reread her journal entries last night and my " heart hurt".
We have found this wonderful family on this site. We cheer for each other and cry for each other as well. Now we must also stay strong for each other. Your will be a poster child for heart surgery. You will do so well. I insist and I don't take no for an answer.
Thinking of you,
Hey Linda, Thanks for the sad news. I must say I lost it. I hope you are ok. Thought about you and Jan. Just realized how close this family that I have joined is so close to me. I just have to concentrate on all the good things that have happened to so many of us.
Do you know of an address to send her family a card?
Guess I will go walk for now.
For the long haul
Hi Linda, I am so sorry to hear about Kelly. I will be sending her family prayers.
As for you.... Hang in there. I never heard about a big cry but I HAD it. It lasted 3 days. Got bad news on vacation, bottled it up. Cried, cried, cried. Not even sure if I'm done. If this happens to you, my advise is go with it.
As for packing, I would bring boots, hat, mittens. What size r you? I could mail you an old pair!
Your Valve Partner, Steph
Hi, sorry I haven't been on hear lately so much going on. I see your still high spirited and that's good. I'm so ready for this to be over so we can finally get together and meet and rejoice. Don't worry about much clothing i took alot with me I mean I took clothes, haircare products everything and I was cute before surgery but afterwards I was like whatever lol. Nahhhh do you whatever makes you feel good. I will keep in touch the closer you get and stay high spirited I'm keeping you in prayer
I would welcome a call from you anyday anytime.
I have a heavy heart upon hearing about Kelly.
Please try to draw upon all of our positive experiences. Remember we all bring very different bodies to this surgery and hers was unable to complete the journey. Sad beyond words.
There is a different plan for you.
Hey again, I know what you mean about surgery before. I had a hysterectome 10 years ago. I have never seen an OR before other than on tv. When they wheeled me in there my blood pressure sky rocketed and that is the last I remember. When I woke up first thing I wanted to know if I was skinny lol. It took a little longer than usual and Frank and Stephanie got a little scared when they heard code blue. So tell your daughter not to worry if she hears that. It actually was somebody else,but they were scared. Same with my Dad I remember hearing code blue and it scared us. The nurses are really good about coming out to update you so that made me feel better.
Yes I am looking forward to meeting you. Some of us might not be running on 8 cylinders thou. I would like to think so lol. Stephanie is taking bets mine will be in the fall. I say the fall but it will probably happen in the winter. Like to get it over with. Im tired of waking up thinking anything bad about hearts.
Oh my grand daughter looks like she might be going to Coastal Carolina in Conway. She wont start until Jan. thou as she is also joining the Navy reserves. I thought it was kinda funny you coming here to Clemson and us going there someday.
Well better go get ready for church and then button the hatches down. They are talking of warnings going up tonight. Talk to ya later.
For the long haul
Yup, really getting close now, indeed. Not a dream. But we are all here for you and will be in Cleveland too, well as long as you have access to a computer. Although Nancy is doing so amazingly well, and such a traveler, I would not be surprised if she showed up at your bedside in Cleveland!
Take it one day a time. Cry if you feel like, but not mandatory. You will do great. You have done your homework, have the top guy at the top facility, you are ready. You CAN and WILL do this.
Hi Linda--I have a pair of snow boots because I visit my daughter in St. Paul; having a little height over and above running shoes helps keep your socks dry, if you're actually going to be going through the snow. If not, the tread is essential for not slipping on icy sidewalks, so be sure to have good treads on your shoes. I know what you mean about the anticipation…it will all be ok…this community really has helped me, as the spouse of the patient, and I know it's helped Jim too. It helps somewhat, sort of, that he's been through it before, and just today talked about how he was up and walking right away, and able to take walks after we got home (being such an athlete, it's hard to hold him back!) You're going to be in one of the best heart hospitals. I know it won't do any good to say don't worry though! We'll have to keep in touch as we both check in to our respective hospitals!
This "anticipation" is the most difficult time....your feeling and roller coaster emotions are very natural and healthy.
Once you get to the hospital its all down hill from there....
Just Pray Hope and Dont Worry
LAS VEGAS NV
Hi Nancy, you can do this and everything is going to be okay you will get through this!! I can't imagine what you are feeling right now, just making the trip alone but my thoughts and prayers are with you.
Hey Linda, Beings we moved from Erie Pa 2 years ago,here is my advice. I dont think you will need boots,probably good tennis shoes will do just fine. You will be in city and hotels and hospital, so if there is any snow the sidewalks etc will be cleared. Cause you are from the south, the cold will get to you and your daughter. I would take warm clothes, sweat shirts, sweaters that type of thing.. We were up there last Easter and where cold. It was like going back into Jan. Couldnt wait to get back here. It is hard to travel anywhere this time of year.
Just today Stephanie was telling me that when she went to hospital, she just about walked out,wasnt going to do this and then the little voice came in. I had that voice as well during her surgery. It really helped me and that little voice isvery powerful and you will feelfine. God will be in the OR holding your hand.
Hope this all helped you. You are still my rock to get thru this and then you in time will turn around.
For the long haul
You are so ready for this, even if you don't realize it yourself. As far as control goes, it is a great feeling to hand it over to the trained people in the hospital. I only wish you were coming to New York so I could be there with you, but I can be a phone call away 24/7. 914-723-6986
Hey Linda Just checking in with you. Making sure you are alright. Its going to be March pretty soon and I would think the butterflies are starting to kick in, hope not.Got a fake bill from hospital today. Tee test was $3900. I might just run medicare broke.lol. It was kind of a bummer. Glad I don't have to pay it. Well talk to ya later. Saying prayers for you.
For the long haul
Hello Linda! Glad to see you'll be comfortable in recovery. It's getting closer. I'm going to google "cleveland clinic guided imagery statement". Havent seen it yet. Isnt it amazing about Jimmy? Keep positive! Steph Cole
You're cool Linda. Just stay the course. Focus on the positive. I found this affirmation below online and I am going to use it. By the way, I won't lie to you. Stretch the truth maybe. But lie?, No. :) - Jeff Shebovsky
My surgery keeps me healthy, strong and alive and in radiant health.
The intelligence of my body is working at the full capacity for my greatest good and wellbeing.
I go through surgery with ease and surrender, knowing that all the angelic forces are with me.
Every cell, system and organ in my body is operating effectively and efficiently for my healing.
I know that the surgeon and medical personnel are divinely guided and supported and I know that the outcome is perfect.
I love and support my body and I know that acceptance and healing grow greater every day.
As I surrender to this surgery, I know that I am supported on every level.
All of your feelings are so normal, you don't know what to expect because you've never done this before. The not knowing how you will feel after is really scary. But in some way's its better to not know. It is painful, but the medication they give you for pain will ease that alot, and each day it gets better and better. Even though it's painful, you can and will do it and you will get through it...it will only last a little while and pretty soon you will be back to your normal feeling self! I can tell from your posts that you are such a strong and postive person. Being positive and having the right attitude before and after you go in definitely help with the healing process. You will do so good! You're in my thoughts daily!
I know you would not take me up on the offer, but I am making it anyway. You are welcome to come to me for a few weeks after surgery. I would suggest that you set up visits from friends at intervals during the first weeks home. You will welcome the company. It also helps to have someone to take little walks with. I know I am happy when someone tells me what they need. It makes me feel like I am making a difference, not just dropping off flowers.
I do not lie about important things (maybe about my weight or how many cookies I ate), I can honestly tell you that pain was not an issue for me. I had the full monty, but the incision was never a problem. I did not have a terrible time in the hospital. My memories of waking up through going home are absolutely clear and not a bad memories. My recovery was just that, a recovery. I wore comfy clothes, watched a lot of daytime T.V. When I started to walk, I walked around my backyard until I felt ready to hit the road. I progressed to my local H.S. track. The medications I had to take did not have side effects or I just didn't feel them. I went to a Christmas party about 10 days post-op. I sat a lot and left after about 2 hours. I found that 2 hours was about how long I could go before I felt tired. I knew at 3 weeks post-op that I could return to work at 4 weeks. I work part time in an elementary school (office). I forgot to mention that in that time I had a bout with A-fib, but that did not alter my pace. I promise you that it was not as bad as you anticipate.
It is not like someone saying childbirth doesn't hurt. That does hurt. This is very, very different.
You will do just fine.
My pre-surgery experience was different. I learned I needed surgery on August 4th, and had surgery on September 14th. I was very comfortable with a local surgeon who was really just starting out. Once I got over the shock of needing surgery, although I was obviously worried, I was so busy making arrangements and getting ready that I did not have much time for anything else.
After the surgery, there was pain and discomfort and issues that came up and needed resolution. For a short while, I was questioning whether it was the right thing to have had the surgery, but that was short lived. Things do get better, in many ways a lot better. I have made a concentrated effort to continue my exercises after I finished the rehab program. Overall, I feel better than I have in a long time.
The next two weeks will go by quickly and you will have your surgery and be in recovery sharing your experiences.
You guys are to much. I told Mitch I was here to cheer everyone on for a while. So I had to give three cheers to his wife. He is so funny.
Personally I think men arent lying they are avoiding all those things you are feeling. I have already had those as you know. I say the butterflies turn in to moths it gets so bad, so Linda you are normal Ok see ya later LInda H.
You go girl!!!! Love the sentiment already. You know life is going to change. You will be fixed physically and take steps to mend emotionally. Glad you finally heard Eddie yelling for you to get off your a@@ and make the most out of life.
Tears in my eyes cheering you on. So, you know what you are going to do with this one fantastic life we have been given. All I can say, is go girl, go. Go get fixed, join the gym, scream until you are horse at the football games. Live life again. No better way to thank your surgeons!
Sounds like you are ready my friend. Keep the faith!
Now, as to your conspiracy theory about this being. Ad and us all lying. No that is for pregnancy as a safety mechanism for us to constantly procreate. None of us want to go through this again. We have been honest, when you wake up from surgery you will feel like Janis drove an 18 wheeler over you. BUT, it is all manageable. Like us, you will get through it just fine and manage well. But, no way you will love it so much much you will say, 'gee, that was fun, let's go again.'. So there is the truth.
Lots more laughter coming in next two weeks, then I will tone it down, nah......
Just checking in on you and see that you have just two weeks to wait. I hope that it is MUCH easier than you are imagining! I know my surgery was quite a bit better than I dared to think it might be.
The morning after I was released from CC, I got on the phone and cancelled the lift chair which I had been planning to rent and I never had pain when laughing or coughing. I was somewhat cautious but, as I look back, I can't remember any feeling of pain. Such is the wonder of minimally invasive surgery! Hope you are that lucky!!! Going to CC is a big step in the right direction!
I went in to the experience thinking I would feel horrid for a month and then I would put my mind to getting better. As it was, I never felt horrid and I was up and at 'em immediately. I commend you for your attitude that you are going to use this operation as an impetus to get out of your shell. I have regarded my surgery as a second chance that I have to make the most of. That outlook influences a lot of the choices I make!
Will be thinking of you and know you will do just great. AND I'm NOT lying!
Hi, I feel like it has been ages since I checked in on you. Just want you to know I am thinking about you. Hope the days are passing quickly and your foot is on mend. Your day will be here before you know it and we will all rally around you like you have done for us.
Hey Linda Glad your foot is getting better. I was just wondering have you heard any more from Kelly? I have been thinking about her, just wondering.
Guess I am getting off here a storm is coming in and I hear thunder once in a while. You have a good day and talk to ya later.
Until Much Later LInda H
Hi Linda--I'm so glad you're able to return it! I got to thinking--my Dad, who just passed away, struggled with Parkinson's and my stepmom got him a wonderful lift chair--but it took several tries to get it right (getting chairs and having to return them). He finally got one that was soft; I sat in it and loved it. If you want, I can ask my stepmom what kind it is….I would have earlier but you had already bought one, so I thought it was too late. But if you have your "recliner of your dreams"--lol!--that's fine too. I think that will probably work just as well. My husband, who's had valve surgery once, said he didn't want to get a recliner, but I think he's just saying it because we have so much furniture already! Anyway, he managed without one last time, but I think having a recliner or a lift would be a great advantage in comfort.
Hi Linda! I was writing cause my mom talks about you to me all the time. I see your messages on her journal to.. Just wanted to say thanks for help keeping my moms hope and spirits going. You have helped my mom (Linda) along the way. She said she would love to meet you someday. :)
Also wanted to tell you good luck on your heart surgery in March. I will also be keeping you in my prayers and thoughts.
I have had open heart surgery myself when i was 29 years old. Head to have a mechanical valve put in my aortic valve. March 2nd will be 3 years and Im not doing to bad. Get a little pain in my chest that I need to talk to my doc about for check up coming up pretty soon. Its probably nothing and it could just be by stress. But otherwise heart wise im not doing to bad.
Have 3 young kids to chase around all the time that keep me going even through the heart surgery.
You are right about all the worrying when you have to sit and wait to get to the other side of the mountain. It does get better when its done and over with. i just tell people to hold on to that pillow tight afterwards when you cough and sneeze. Doesnt help a ton but a little. That is my biggest tip and just to push yourself and make yourself do what you need to get out of that bed after surgery. dont overdo though. Good luck!
Prayin for you.
Jeff - Linda. You both will notice a soulful calmness that will come over you just a few days before. Not sure what. But something does pop up and take over - you will be a peace - and all will be well.
Mark my words! let it take over - release- and engage
It's beautiful. Talk soon. Hugs. Nancy. (2-9-12 it's OVER) Got the OK to fly to keys Thursday so will spend a week or so there. Not too shabby. ! Even bought a recliner ( power) for that condo too. Ha ha) Luv. Nancy
Hey guess I missed a post. Glad to hear your Grand daughter is going to Clemson. I have a Grand daughter going some where. She has 16 collages to choose from so not sure which one she will go to.She had told me maybe one over by Myrtle Beach but cant remember the name. She is waiting for a real nice schlorship from the Navy also.
I will be looking forward to all of us meeting someplace. My email is firstname.lastname@example.org Looking forward to it.
It seems like church always speaks to you before something major happens. You have the best doctor and the best hospital; your surgery is going to go wonderfully! You will be in and out in no time and in the recliner lift, =0)
Hi Linda! So glad to hear your message. We are truly our words. You will be amazing, I will be amazing-right after you! We will be strong. We will feel comfort and safety. I am excited to meet you. Just knowing you'll be at C.C. brings me comfort.
You arrive 3/9? When is surgery date again? 3/12?
I fly in 3/13 (late) and begin pre-op in am. Surgery 3/15. My doctor is Stewart; pediatrics. I will look for you in the am on 3/14 before testing. I want to make sure I have your dates in my phone. I will pull up email with cell too. Keep smiling! Stephanie Cole
Hi Linda, I have been keeping up with your journals and I know you are ready to have this done and start recovering. Yes, I agree a positive attitude is key in recovery. You have that, plus a loving family, friends and a caring church so you will do amazing! That chair will be well used. Good purchase!! I have you in my thoughts and prayers. Janis Kielbasa
I am just a little bit closer than you, now at 15 days!. I feel what you feel, day in and day out. Force that good attitude and make it a habit. It is hard to not let those bad thoughts creep in but we have to fight it all we can. Do you have Peggy Huddleston's book and CD? If not rush it. DO IT NOW! I got it sent 2 day from Amazon, Her is Peggy's website for more info:http://www.healfaster.com/index.html
Hey Im still hanhing in here and keeping up with all of the posts. Think I am going to post tonight in journal. Hey guess what your are getting closer lol. I was thinking after we all get to be bionic, if you are ever in this neck of the woods and Ricki Shine, I think we all should meet some place and be like the 3 muskateers.Whatcha think? She lives in Greenville and I guess you like Clemson and I go to Anderson a lot. I think it would be fun.
Until Later LInda H
Thanks for the warm welcome! At my last appointment (which really was my first appointment at Emory).The doctor(Dr. McConnell) ran test like EKG,ECHO, and just gave me a breif summary of my condition and diagnoses. He told me that I would have to have surgery again and that it wasn't urgent right now but something to consider in the near future. I.have another appointment in two weeks so I will see what, if anything has changed. Every since he told me I would need surgery ive been searching the internet for answers. I plan on purchasing Adams book very soon,I see how it has helped so many others prepare themselves for surgery.
Hey That is great news about Kelly. I have been thinking about her a lot. So now we might be hearing some good things to come. Thanks for the update. Thinking about you too. Saying prayers tomorrow for everyone.
Until Later Linda H
That's exactly how Jim's feeling too (me too)--wanting it to be over with yesterday! It will all go well, it's just the waiting; Jim had this done before and recovered fairly quickly.
Ouch--sounds painful Linda…maybe for exercise you can do leg lifts and strengthening? That's what I'm (supposed to be) doing for my bum left knee! I actually do it some of the time. :) Take it easy though--see what the doctor says before trying anything.
Thinking and praying,
Donna (Jim Smith's wife)
This is my first guestbook to sign. My husband will be having a mitral valve reparied by Dr. Gillinov in July ( put it off two months because of golf and family vacations) and i just wanted you to know I will be adding you to my prayer list. Also, after MUCH, MUCH, MUCH research and recs, just know you have the BEST doctor. We were willing to go anywhere, did ALL our own research, and you have selected the place and person to do your surgery.
I do strongly recommend you read his book 411 Heart. I won't post much, but will be reading every post youmake.
Glad that it isn't worse or will postpone your long awaited surgery date Linda. When it rains, it pours as the old saying goes!! You will work through this hurdle sucessfully....soon you will be on the other side of all recovery...foot and heart. Keep smiling...what else can we do? Have to keep our sense of humor and love on each other for sure. Hope your day is blessed and rich....make lemonade our of lemons. Like you said it is good new...no major break but not so good news with a fracture. Bless you dear one!! Jamie Todor
You are right, I should have done what you did however I was told there was an astronomical fee for copies of the films, etc., but no charge if sent directly to a physician, plus, they kept telling me they sent the records but never did! Live and learn!
Please feel free to e-mail me at email@example.com. I live about 1/2 hour away from the Clinic. Please let me know if I can help you or your family out in any way!
Dr. Gillinov is the best and I believe will be worth the wait! We will be in great hands!
Yes, LInda the before side of surgery is sooo scary even when God's peace is with you. So much unknown even though Adam's book is totally wonderful at getting you prepared for the different steps of this whole thing. The best thing is waking up and having it all behind you....and knowing you are going to work but the worst part is over....the surgery is over and it was successful. It is much, much better being on the healing side. Hang in there...you are almost there. Anxious to hear about your foot....you sure had to make things even more spicy with the foot injury! LOL....and the story continues:):)...Hugs from afar!
Hey Linda, everything will be fine. You are our prayer warrior and we will be praying for you as you go through this chapter in your life. The butterflies are always there because this is a great challenge,but we can do all things through Christ who strengthens us.
You WILL be so glad when you get on the other side of this....it is amazing one you are on the recovery side just knowing that worst part is behind you. I am not saying that recovery is always easy but what a relief to move out of the surgery stage and onto the healing stage. You will do great. Lots of new and old friends praying for a great surgery and recovery. Praying for your poor foot too....you don't need that for sure. Hugs and don't forget....you will do just great. Keep the faith. Hugs. Jamie Todor
Linda ,Thank You very much for the warm welcome.Clevland clinic is one of the best places in the world.I will be praying for you good luck and keep me posted.Also let me know who your surgeon is,you new friend .Anthony Fumo
Hi Linda - Sorry it took me so long to post. Hang in there. Good days and bad days. I have those I can face the world moment to I just want to curl up in the corner and cry. I just keep reminding self..That I could know nothing about this then one day collapse..Don't want that to happen.
I do know about it and I also know we can be fixed..I just keep coming coming back to that. We can be fixed and get back to living. I think that is what really helps fight through the fear.
hang in there. We are all thinking about you..Wont be much longer and I will give you a play by play.
Hi Linda, This is Linda. I guess its my turn, I was being a big baby about Tee test and you told me I could do it. Well its my turn now. You can do it too. After all I have been telling all of my friends that you are my rock. I just wish I lived a little closer to you so I could give you a big hug, and share those tears. You and all the others are in my prayers and thoughts. I hope your foot gets better fast. Oh by the way, You might want to call airline and get assistance like a wheel chair espically for return home. CLE is a pretty big airport and the walk can be a little far. Right now my nerves I think are on vacation lol until the next hurdle of who know what.
Until Later Linda H
Hi Linda, lol! about the Friday the 13th! I know what you mean about the butterflies, even though I'm not the patient but the patient's wife. This community is really a great resource; we can know we're not alone. It's amazing what they can do these days and how many people have heart operations. I won't say it's routine, but it does help to know that many people have gone through it and come out with their health and strength back! God bless, Donna
I know what you are feeling. My diagnosis was May5 my surgery was August 9....for a while it seemed 5 weeks 6 weeks....it was out there then it was 10 days, a week, a day.
I just had my six month anniversary of surgery....with support of your family and loved ones.....YOU WILL LOOK BACK SIX MONTHS FROM NOW AND JUST SEE THINGS AS A POSITIVE LIFE CHANGER.........
LAS VEGAS NV
Of course you will be OK. I offer my PS promise on that one!!!! We all go through this. We have discussed there is a reason for you to get the date you got. Might not know why, but there is a reason. Likely to give us the time we need to get ready.
We all have the HS moments. We all have the "we are going to have WHAT done....no thanks, I am gone." We all get past this with the help of our friends. You have been there for everyone. We are all here for you. Close your eyes, and feel our hugs and support. You can and will do this. For sure!!!!!!!
Tomorrow you will see, each day is different, some good ones, some bad ones. Take it easy, stay off your foot and do something nice for yourself.
Hi Linda, my name is Donna Smith and I'm Jim Smith's wife--you wrote such a nice note in his journal--he's having mitral valve re-repair in New York on the same day as your surgery. You sound like a lovely person and we are praying for you and wish you all Christ's blessings!
My name is Stephanie Cole.
I started a blog this evening. I was immediately informed by Nancy that you will be at Cleveland Clinic when I am!
I'm scheduled for mitral valve replacement 3/15. How about you?
I am excited about this website, the journals. This all seems so positive. I look forward to hearing from you.
Linda - it's been 3 weeks since my surgery and I can't believe it's gone by that fast. You think your date won't get here, but believe me, it will be here before you know it and then you blink again and you will already be 3 weeks into your recovery and the rest of your life. I know you will do great and you stay in my thoughts and prayers.
You actually sound better. I do believe your feelings are exactly the same as all of ours, but you express them far better. I found that I was calmer as the date got closer. I think that is going to happen to you. On the actual day of surgery I was excited. I think I was excited to get it over with. You are in my thoughts even if I don't post.
Getting closer..... I like that. Booking your flight reservations is a big step closer. Pretty soon you will join us on the other side of surgery. We will be welcoming you with open arms and fixed hearts! -Mitch Friedman
Hello getting closer Linda! Glad you booked the flight and hotel, one less task to worry about. Yes, maybe a pet sitter for Willie would be easier on him. Doesn't hurt to check your options out. I know the waiting has been hard on you. You will do great. Don't worry, all will go well. I know this to be true!! Janis Kielbasa
Just stopping by to let you know I'm thinking of you. I have you in my thoughts and prayers. I know the waiting is hard. Hang in there, soon you will be done with surgery and in recovery mode. Keep us updated. Hugs, Janis Kielbasa
Thank you so much for your kind words to me. I think I'm beginning to get the hang of the journals and how they work. I hope you are doing well and staying busy do you do t worry much. I look forward to more journal entries from you. By the way...My bump in the road is getting better. I was pleasantly surprised to see that as my pneumonia is getting better so is my chest pain.
thanks i'm getting better... about the CATH... with folks like you, MItch, etc.. so we'll see .ike mitch it's the day before on FEB 8
I did find a book that in my opinion is just as good or even better than adams.. but I highly suggest it.
it's called the OPEN HEART companion by Maggie Lichenberg. really really good I had it' overnighted on amazon so I"d have time to read it.before feb 9 really good stuff highly recommend it.I think $15. go for it. thanks for your support. we're in this together wish we could do lunch ! maybe one day... Nancy
Hi Linda, just stopping by to say I am thinking of you and have you in my thoughts and prayers!! Soon, you will be fixed and on your way to recovery and enjoying that beautiful family of yours. Hugs, Janis Kielbasa 5 weeks post op
Steve Regouby here. It lookslike we have very similar synptoms. In my surgery on Dec 14th, 2011 they had to repair the ascending Aorta as well as replace the Aortic valve. They put a mess material in the ascending aorta. I am glad that the surgeon went ahead and did that for my future.
I bet you are going to do really well. I am so pleased at the new energy I have. I will be monitoring your progress.
Great! I did not see that movie, only the clip, but MAN is it ever inspirational. Love the idea of the "heart surgery playlist" with songs like "I can see clearly". Weather in the O.R., pre-op, or in recovery. These are THE types of things that will get us through. Good night. Busy Monday ahead. Lots of bad backs to take care of :)
Love Jimmy's kids' "heart friends" classifiction. Really more like "heart family". This internet thing is amazing.....connecting us all from all around the U.S. and the world. Friends made so easily and bonds made so quickly. March will be here before you know it. No date set for me yet, but I will have one after I see the doc on Feb 2.
Hi Linda, I took a little break, but am back now. Just read your latest entry and all I can say is WOW! I feel the same way about much of what you wrote. I feel like we all are a family and my new family here has so helped me through this journey. Everyone here DOES get it more than my family. I feel like posting and simply saying "ditto what Linda said" as I could not put it more accurately than you did.
Thanks, thanks, thanks to you and Jane for pushing me to start my own HVJ. I am forever in your debt.
While I know many of us are on your "not fair" list, it is more people to be prepping you and there at your finish line. Stay strong!
With you all the way Linda. It's been an instant camaraderie and you guys are like family but with a different twist because you all understand what it's like to go through this.
Jeff Shebovsky, Orlando
I shared this with Mitch and he suggested that I post it. There is a belief that we are all born with parts to a puzzle, but not necessarily a complete puzzle. We hold pieces that complete other peoples puzzles, as do other people for us. What you expressed about your feelings about the HVJ family only confirms that belief. We are here to offer our puzzle pieces to each other. You have certainly done that and so very well on this site. It is an honor to be part of your HVJ family. You shine and we bask in your light.
Linda - I think there is something about facing heart surgery that makes us face us our own humanity and opens us up for these emotional swings. I think of these swings in another light (and I also have dealt with some during the past couple weeks), and since I know you are a person of faith, sometimes it is just God's way to remind us to "Be still and know that I am God". You/we are in God's hand and His will will be done so try not to worry so much about what you can't control. I know the value of friends, church, etc. and they are all important. And like you, I have a very small family. But they are who I thought of at all times through the past several weeks and tried to stay positive for. I know you will do well and you have so many people on this site praying for you. I know it's easy to say but sometimes harder to do, but just try not to worry - this is going to be better than you're allowing yourself to believe.
I'll say again, I will send you my phone number if you think talking with someone one week removed from surgery will help.
Just read your post. And I must say I was the same. And still now my family doesn't understand the relationship I have with HVJ family. And why I was in such a rush to make sure I let you guys know what's going on and it's because like you said you guys understand me better and know what I was going through. So no you weren't sappy lol this is the one place we can express. Keep in touch
Thank you for all your great posts, the hardest part for me was accepting that I have a heart condition and need surgery, once I truly accepted that I was at peace. You will do excellent you will see, recovery will take time but you will get there, you will look back during recovery and see really how fast things go. GOD LOVES YOU, I will keep you in prayer, Jim
"Linda, I do understand and you are not alone. You have all of us. Your postings and the sharing of your story will help so many others who are afraid to reach out. You can do this and you will be fine. You will be re-newed. After recovery, you will be healthy and ready to do things you haven't done in awhile. You will be bolder, braver and know life is a precious gift. I have you in my thoughts and prayers. You will do great! Your friend, Janis Kielbasa
I'm glad you are journaling and sharing your inner most feelings with us all. God brought you to this site and He will bring you through your surgery.
Once again, I'm throwing you a cyber hug from me.
I remember those feelings well. I got so many massages before my surgery and went to several yoga classes to help me get over the anxiety. Still, a song on the radio or a thought would creep into my mind and I'd lose it also.
You will bring a big smile to all of us HVJ folks when you post your first enrty after surgery and report that it's true.....the waiting is the hardest part.
Love you,Linda. I continue to lift you up in prayer.
Linda - I confess, I saw where you were an avid Clemson fan but decided against bringing up the Orange Bowl fiasco - just trying to let you move on! That was truly a great day to be a Mountaineer fan!!!
Anyway, I wanted to say what others have already said, I also dreaded the breathing tube but I really do believe the dread and anticipation of waking up with it are worse than the actual event. You're pretty much in la la land and it will probably be out before you have a chance to think much about it. Try not to waste too much energy thinking about things you can't control but others will for you - we're probably much better off for them doing it anyway! You will do great and it will be here and gone before you know it! I have your surgery date on my calendar for an extra round of prayers!
It was me - Anne from Colorado who posted about an hour ago. As for the type of valve, I figure if I need another valve down the road, they will be doing the valve replacement through the femoral artery on just about everyone.
I'd trust Dr. Gillinov to know what is right. I'm sure he will have a good reason. Dr. Mihaljevic also preferred tissue valves.
Hope you are relaxing a bit. It seems everyone worries about the breathing tube but it my case, I can barely remember it. You aren't exactly alert and rarin' to go while they have it inserted! You are in and out of consciousness - kind of drifting along. At CC I think they are so skilled and you are so well cared for, that they get it out sooner rather than later.
Just put on your relaxation tapes or some soothing music and try to think pleasant thoughts.
And remember - do your breathing exercises as many times as you can. They really help if you have back pain. I hope your operation is as easy and pain- free as mine was.
Hi Linda, Just want to let you know I'm thinking of you. You are in my thoughts and prayers. I know you are still waiting and the anxiety of that can be consuming. I got lucky because not many want surgery near the holidays so surgeon had openings. I only had a few weeks of waiting. You will do great and have the benefit of nice weather so you can walk outside as you recover. I'm on week 4 and doing well. I start cardiac re-hab Feb 9th. I will admit, hate the coumadin...they can't seem to get mine right so I'm having bi-weekly blood draws. Hopefully, it soon will get on track. I stopped all pain meds. I really didn't need them any longer. I struggle more with sleep so will ask cardio about that. Its amazing to think just 4 weeks ago I had open heart surgery/full sternotomy and how good I am doing now. You will be amazed at your weekly progress. It is a blessing that we can be repaired and lead full lives. I know the waiting is hard but know you will have a good outcome and be on the path of recovery very soon. Keep in Touch. Janis Kielbasa
Jeff, so far my date is March 13th!!!! That is the first opening Dr. Gillinov had. I keep hoping he might have a cancellation before then...I can get ready really quickly..but til then...waiting, some days patiently, some days NOT!!
Just wanted to say hi and that I'm thinking about you.
Shortness of breath is VERY common in valve patients. That was my major symptom. Sometimes it was very mild. Sometimes just getting into bed made me huff and puff. No gulping for air except on a couple of occasions walking up hills. If you're concerned, call your doctor.
I noticed my symptoms getting noticably worse as I got closer and closer to surgery. I don't know if it was nerves or if my condition was getting worse. Either way, after surgery most disappeared pretty quickly. (I still get short of breath on hills . . . just my lot in life!)
TRY to relax . . . not that much longer until you'll be feeling better.
I also wondered about the term "shortness of breath". I never could tell if I was pre-op and now post-op I still feel it if I walk up a few flights of stairs. I think if you have to question of then we are not. Mine sometimes woke me at night. I think it was anxiety as well. The waiting serves a purpose. It is so annoying that when the date gets here you are happy. You would never have been happy about open heart surgery. Just another way of looking at it.
I keep you and Mitch and all those waiting in my thoughts.
Glad to see your new post. I know waiting is tough, but you are tougher! Don't wait too long wondering about symptoms. As I am sure you would be quick to tell someone, go see your doctor and see what he says. Maybe you have progressed and need surgery sooner. Hmmm...would that be a good thing or bad thing????
I think of you often. Stay strong.
- Mitch Friedman
HI there.. if you feel comfy please call my cell Linda.. we'e in the same boat. .. and while I"m keeping busy must admit have the same questions/ fears/ what ever as everyone else am staying positive / with opitmism..yada yada and now I"m veyr glad that I choose st louis; as I sure as heck didn't wanna wait til March. but as you see..Jan is almost over..
think of you often. will be traveling; but here's cell if you like:..314 276 1012 I do a lot of presentations; so if vmail answer...yes leave a message. I will call.
Yes your right my brain signed my name but my fingers didn't lol and yes I think that would b a great idea. I guess you truly meet new friends everywhere. I now have something else to look forward to so I must pull through this surgery so we can mert once we both are well. I will defiantly keep in touch.
Hi, there you are. I had to look for the person which left such encouraging words in my guestbook. I have to let you know that you really lifted my spirits. And I pray that your surgery is a success. You deserve it. And thanks again for the encouraging words. Oh yes my husband and my mother will be updating for me. At least I hope there able to if there not so nervous!
It was me Linda....Jamie Todor...I KNOW you are sweet cause we are in this heart thing together...sisters and brothers all!! I forgot to sign this...drugs are still making me buzz a bit. LOL. Jamie Todor
I think having a meltdown is soooooo normal. Have to let all of those emotions out dear one. It is such a stressful time.... I really like the 6 points posted on your comment page. They are soooo concrete and will help you stay grounded. It is soooooo stressful and it doesn't take much to rattle your cage these days. I seem to be still so sensitive. Take some deep breaths. I will pray for peace within your heart for your surgery and your doggie. I am soooo happy you shared your fears and worries. Soon it will be your time and you will feel better. God bless you sweet Linda...so many are praying for you.
Hugs thru the journal pages!
Linda - thanks for the note and the encouragement. I have your surgery date down on my calendar and you are one I definitely plan on sharing info with.
If I don't send info about something you may be curious about, please don't hesitate to ask me. I think one of our missions in life is to share life experiences with others and I take that very seriously. I follow all of your entries and hope I can be supportive of you.
Linda - Thanks for the comments in my journal.
I'm wondering if I am reading too much as well but I can't help myself - I am so interested in all the experiences everybody has had or is having. The support on this site is amazing and I'm so glad I signed up as part of it.
My daughter will be posting for me from Tuesday (surgery day) until I'm again able. Believe me, I will certainly share my experiences with you and the group, Lord willing, as I move from pre surg. to recovery etc. Please stay in touch!
Dick Miller - Cincinnati
As we know we come in touch with such great folks here; this is from 'drivetoplease' who just celebrated her 1 year anniv. and it helped me a lot
I have it posted on my desk. too GOOD not to share... thanks Tracey !!!
Here are things I told*myself of over and over to calm my nerves before the procedure:
1.* They have been doing valve replacements for 50 years--it works.
2.* There has never been a better time in history to have a valve replacement.* We have amazing technology and tools today.
3.* Without the surgery my life will be shortened.* With AVR my life expectancy returns to normal.
4.* I am strong and healthy*and I can handle this.
5.* Once I am recovered I will feel better than ever.
6.* The scar is a badge of honor that I will be proud to show off as a symbol of survival.
You are quite right- the journal is for whatever you need to say, and none of it is silly, it is real. Most of us have been in the same place or will be before long. I truly think the mental aspects of heart surgery are harder than the physical aspects. John is right about the tube, you aren't likely to remember it at all. I found out later that they had to tie my hands down because I was trying to pull it out, but I don't remember anything about it. And nothing hurt that first night, or really even the next, they are so good about pain management. Only when I started trying to manage the dosage myself did I start to get in trouble. My night nurse told me to just go by the clock, if I wait until it starts to hurt the pain will get ahead of me. She was right about that. And don't worry about Willy. I had to leave my dog too. They can't tell time so one night or one week is all the same to them, and they are SOOO glad to see you when you get home! It really puts a smile on your face....
Vicki Pierson mitral valve repair 6-2-11
I had three months to think about my surgery...had many many meltdowns...even just driving down the street and I would have to stop to collect myself.
When I went into surgery knowing my three babies, dogs, would be there to greet me was inspiration to get through this for them.
No one worried about the breathing tube more than me.....Honestly I barely remember them removing it....and that time in your recovery you are so drugged you dont have a clue what is sticking in or out of you....
Having been a survivor now ....I had never had an operation EVER... I was terrified...my fright level was at a maximum level.....truthfully once you are knocked out... you wake up and you are cared for by angels in ICU and helped by the love and prayers of your family.....its going to be OK, not as bad as you have it in your mind...let go God will get you there..
LAS VEGAS NV
Hey lady. U were there for me so now I'm there for you. They say melt down s are ok. So u r good to go. But u also shine thru with so much optimism - hang on that
I go in 2-9. And I think been busy is keeping me from a melt down :). Come travel with me. You'll be too tired to melt down. Lol
I did get a new recliner so I'm a happy camper. Hear tell that'll be our best friend.
I just want it to be over & get back to mtpy job which I love.
I had wanted too, to go to CCF. However found that one of the best valve dr is rite here in st louis If I can I'll send u something that really helped me. I believe you'll like it. Prob tomorrow. It's on my big computer & im on the Ipad. Another valve friend sent it to me & it really helped
Best & stay in touch. My email is
Nancy@telephonedoctor.com. If u wanna email direct. Happy to hear from u. Hugs. Nancy. St Louis
I read your journal and it mirrors what I went through.......a few melt-downs and what-ifs and maybe I should have.....((( Wrapping my arms around you)))
My husband had a coyote/shepard mix that was so much like a coyote.....wouldn't let anybody touch her...very nervous. Before my AVR surgery, I went on 3 3 day trips. My daughter reported that the dog (Molly) was pacing from my bedroom to the livingroom....back & forth & back & forth. And, she wouldn't eat. My daughter and her 2 kids lived in my house during that time.
She was more clingy the few weeks leading up to surgery. I asked the vet and was given Valium for her. It worked wonders! Wished I would have though of that earlier.
Today is my 6 month since my surgery. Continue to write in your journal for us to read. Continue to share your thoughts & feelings. That's why this site is here. I know we sound like a broken recornd, BUT, the waiting is the worst part!!!
I believe that there is a reason that we have melt-downs. When something is so overwhelming we should expect many mini meltdowns. I think our thoughts go to something extremely sensitive because we NEED the meltdown, even though it is exhausting. We need to cry and curse and pound our chests(not too hard), and say Why me? The fact that you shared your day with us is a reassurance to all that we are just human. I know you feel better today. I promise you will look back at this and have trouble remembering the most anxious days. They will start to fade. Remember, we are all here for you.
You seem to have done all that you can to prepare for your surgery. We have the same diagnosis, are the same age, and both live in the Carolinas. I had my surgery Dec. 19th at CMC-Main in Charlotte by Dr. Mark Stiegel of Sanger Heart. It was a full sternotomy, and he was able to repair, rather than replace my ascending aorta. I was home by Christmas eve and have been doing very well. An old Charlotte neighbor used Cleveland Clinic and was very happy with them.
You're certainly entitled to a meltdown!!! A few days before surgery, I was prescribed some anti-anxiety meds, just in case.
You are in my thoughts...stay strong and positive...Your definitely entitled to have meltdowns any time you need to. I think having those real moments help you deal with what you're going through! Hugs!!
Oh my dear friend. Hang in there! And thank you for "living out loud." For many of us, this is not something that comes easily or naturally. And yes, that is why we created our HVJs in the first place. To share and put it all out there. This is the work we must do to get ready.
In return, we get support from family, friends (old and new) and complete strangers. All with the same message. We are here for you, you will get through this, and thrive. Yes, YOU WILL BE FINE. In fact, you will be a better person, not just physically!
Don't even think of trying to get through this alone and in silence. Reread the chapter in Adam's book that mentioned "get used to asking for help."
And remember, dogs are loyal. Willie is just pissed he can't be at your side in the hospital, because that is his job in all of this. No worries, he'll be waiting for you at home, probably on your side of the bed. just like Janis' dog.
Linda...Don't ever underestimate the power of your Dogs loyalty. During my long recovery when I was annoying the heck out of my family...Good old Frisky was by my side no matter how I acted. I was in the Hospital for 20 days and when I came home he was there waiting for his buddy like I just ran to the store!!!
Yes, the waiting is the hardest. Try and focus on how you will be good as new very soon. You have done your homework, top hospital and doctors, all will go well and you will do great. Per hotel: Northwestern/Chicago had 3 hotels that gave discounts to patient's families. My husband got a hotel across the street, usually over $200 for $89 dollars a night. Be sure to ask Cleveland...no one told us this...we just asked and sure enough it was something available. I have you in my thoughts and prayers. You will do great and soon be on the raod to recovery. Hugs, janis kielbasa
I have read your journal and I wish you the best from someone your age who is a 3 X visitor for heart surgeries valve and defect related. Each time the waiting is the hardest, however in retrospect each step serves a purpose for the journey. I did not discover
HVJ and all the wonderful support until after my last surgery. I am so glad you have your daughter to support you. Take care and if there is anything I can do or answer for you please do not hesitate.
From one Carolina gal to another
Sorry you're having a nervous day . . . that's pretty normal . . . try to put it our of your mind and concentrate on the good stuff in your life (and how good you'll feel after you recover from surgery!) If you're getting dizzy walking on your treadmill . . . maybe you shouldn't be on it. My doctors told me NOT to exercise at all before my surgery. Considering I hate to exercise, they didn't have to twist my arm!
Thinking of you. Just keep exercising (as long as the Dr. says it's ok) and be in as good of shape as possible BEFORE the surgery. Walking was what did it for me. I also very rarely use the elevators at work. I also park farther away so I have to walk a bit. It works!!!! God Bless
It's your only life so go for it! You deserve first class. I get the impression that CC isn't that concerned about how much they get paid.
The one bill thing alone is reason enough to go there. I remember when my husband had terminal cancer many years ago. The pile of bills I had just overwhelmed me. You don't need that on top of everything else!
I will bottle up and send all of the Karma I can locate!!!
We stayed at the Doubletree downtown but only because we had to rent a car anyway due to Erik running to the 'burbs to pick up my mother. The hotels away from CC have shuttles but they don't always run at the most convenient times. I think when you factor in everything, the Intercontinental would probably be the best. The concierge at CC can probably give you all of the info you need in one phone call plus help with the reservations and the limo from the airport.
As for insurance, I had Medicare and a secondary insurance that wouldn't pay outside of Colorado. I got ONE bill from CC to cover the entire operation (nothing from anyone else). It was for $2,066 but with a notation not to pay because they were still dealing with my secondary insurance. I have never gotten another bill so the total of my operation was $0! Considering that, the hotel/airlines and other expenses were nothing.
I think for you and your daughter, nearer is better!
P.S. I had an appointment with my cardiologist on Friday. He is amazed at my procedure and recovery. The surgeons from his group are going to learn to do this minimally invasive surgery because of the success I have had. My EKG was great.
My family and I stayed at the Intercontinental. I liked being able to use the skyway for weather (the day of my pre-op testing it was like a hurricane!) or at night (the first night I was in my regular room, my husband stayed with me. At 4am his back was killing him (the "beds" for visitors in the rooms aren't really beds and aren't comfortable) and I was fine so I sent him back to our room to get some sleep - I was happy he could just walk back and not have to be outside or wait for a shuttle. If I recall, the Intercontinental was $199/night - although that was 1 1/2 years ago.
Email me at firstname.lastname@example.org and I'll tell you some details about the cost of the surgery.
I think I can help you on the hotels at CCF. When I went for my consult last April, we stayed at the Guesthouse, and it was horrible. When we went back for my surgery in October, we decided to stay at the Intercontinental Suites and it was awesome! We had checked out both the Intercontinental and the Intercontinental Suites when were there in April, and the Suites was nicer in some ways, and a lot less expensive. Be sure to ask for the patient rate when you book it. You have to stay a week to get the good rate, but that wasn't a problem since we were there for thirteen days. If money is no object the intercontinental is really nice too. Hope this helps.
Hi Linda, good to see you are still hanging tough. For me they said aortic root was a binary decision, if CT scan show 4.5cm or larger, they will replace my root. If smaller than 4.5cm, they won't. But, I do not have your family history. Good info on it on the Cleveland Clinic, I found it by googling bicuspid aortic valve disease and looked under other complications.
Not sure if you saw my reply to you in my guestbook, so I will repeat what I wrote. My doctor seems to be similar to the doctors in Cleveland. He said 95% of all valves installed these days are tissue. He also said to me, at age 47, over the next 40 years, I will likely have 2 total surgeries if I choose tissue. He then made a very bold statement, he said the risk associated with being on Coumadin for 40 years far outweigh the risks from 2 surgeries. I am now leaning heavily toward tissue. I may change back and forth a few times in the next few weeks.
As everyone says here, it is a hugely personal decision and I agree there is no right, wrong or bad decision. It is what you are comfortable doing.
Linda. I own my own business & am pretty literate on computers but Im having trouble navigating on this. What's the best way to return a message ? Go to the site ? Answer direct. How does one send respone. Or is what I'm doing right. Lol. Thx.
Hi am new to this as well/ including procedure/ and the journal.. MY AVR is 2 9 12 and I"m ready. Am in St Louis and feel very good about it all. Great Dr. great hospital. etc. I"m on another forum that you might find interesting. Valvereplacement.org it's quite addictive..as is this.
Are you having a MINI/?? they expect to on me; except if they find bad stuff the day before on the cath. oh my ! hope not. I don't have pix up yet. I will
best wishes to you.. stay in touch. not sure if we're around the same age/ mid/ 60's female/ and in pretty good shape.. exercised. etc. thanks, Nancy
You brought flashbacks to me of those few weeks before my surgery. Wish I could wrap my arms around you now. But, please believe that you will be fine. You'll be surrounded by professionals the whole time and not be left alone.
Did you see the picture on my site of the doctors in the OR with Jesus???
Linda...sounds like you have the same condition I had. My advice would be to get yourself in as good of shape as you can prior to surgery and once you make your valve decision, don't look back. I am a big believer in the power of positive thinking, so be confident and stay strong. It will serve you very well.
Just let me know if you have any questions...I want to help you in any way I can.
Congrats on getting a date! In some ways it makes it more real but in others it should help you relax a bit as you have more certainty about what's going to happen. Whether they repair your root or not will be determined when they get a better look . . . it's certainly something to discuss with Dr. Gililinov when you meet with him.
I has a mini-sternectomy. My scar is 3-inches long. Pretty amazing!! Not long ago I would have had my whole chest cracked open . . . I'm glad I didn't need to have the surgery earlier.
As you get closer and have questions about what you will experience in Cleveland, don't hesitate to ask.
I opted for the mechanical valve and I'm happy with my choice. Being on Coumadin is proving to be no big deal to me. It's actually the only med that I'm taking and it's a low dose. I have a friend who received his tissue valve in 1987 and he still has it. And, he's very active. Amazing, isn't it?
I'm sending good wishes for you to have a safe and wonderful New Year's weekend.
Linda...you are in great hands at a great facility. My surgeon told me the same thing regarding valve replacements in the future, so I went with tissue too. I had the full sternum split due to my enlarged aortic root, so your recovery should be a bit easier. The waiting is the toughest. The recovery will go by very quickly...I am now 2.5 months post surgery and am doing everything I was doing before. You will do great!
Now it is a reality. You will have days that you might be able not to dwell on your upcoming surgery and days that you will think of nothing else. Having so much time will enable you to get ready and hopefully calm down knowing you are in the right direction. Those of us that have been through it will do our best to keep you focused on the positive outcome. Happy New Year.
So glad you have a date! I'm sure you are filled with anxiety now that the date is set ( I know I was!), but the anxiety will ease in a day or two when you start to accept the whole thing. The waiting truly is the worst part......wish you could just fast forward to March 13th.
You will do great!
Godspeed and good luck!
WOW! Linda, that is great news and what a way to start your New Year of 2012! Although, March 13 is sort of a long time to wait. Actually, I remember the waiting being like that of being pregnant. I knew the due date....was somewhat worried about the labor part (open heart surgery) .....and hoping that the new baby (heart valve) was going to be the blessing I prayed for. And, just like having a baby......I don't remember any of the pain or discomfort of my aortic valve surgery.
I have March 13th circled on my calendar for you.
Linda, Awendaw is on 17N.from Mt. Plesant. I spent 11 days in the Hosp. and a 2 day return.I ended up with a permenent Pace Maker. I saw the Dr. 2X in the Hosp. My family was left in the dark. There was NO Pre or Post Op. education. I let them know how angery I was. I have been free of pain since Nov. 14 (NO pain Med.needed) I have survived many things in my life and this is one of them.
Dear Linda, Awendaw is located just N. of Mt. Pleasant on 17N. Tomorrow will be 8 weeks in recovery. I am doing well now. I had a difficult time. 11 days in the Hospital and a 3 Day return stay. I had AV replacement and ended up with a Pace Maker. I saw the Dr. 2X. The Nurses were great. My family was left in the dark. I am angery about that. I did let them know. Where will you have surgery?Doris
Yes, waiting is the hardest part. I heard back from Dr. Sabik's nurse 2 weeks after my records arrived. I also had the hope (fantasy?) that they'd say . . . oh, those doctors in SC don't know a thing, you don't need surgery. But, of course, they called and confirmed everything my cardiologist had told me and scheduled my surgery for a month and half later. And yes, if it was emergent, they get you in more quickly and may even send the CC plane for you. (I was happy not to have to have THAT kind of service!)
Once I had a date, I did feel better and kept pretty calm all the way to the operating room. It may be hard but I think it really helps to stay calm. Some people need medication to help them . . . if you need it, don't hesitate to ask.
Try to enjoy the holidays . . . you'll be on the road to recovery before you know it!!
I live in Wisconsin, and I had my records sent to Cleveland last February. It took a good three weeks before they got back to me. They then suggested I come for a consult, which I did. I had surgery with Dr. Gillinov in October, and I can tell you he is booked several months in advance. However, if you are in immediate need of surgery, they will find a spot for you. Dr. Gillinov is THE nicest, most compassionate and confident doctor I have ever met. My surgery went great, and I can honestly say, the hardest part was the waiting and worrying. The pain was waaay less than I was expecting. I know how anxious you are right now......I was the same way. Ask God for His peace and know that it will all go well.
God bless you, Linda. My heart goes out to you during the next few weeks....the waiting to hear and then the surgery.
My husband passed away 3 1/2 yrs. ago. And it was a bit hard to not have him by my side during my surgery. He was great at spoiling me. But, my family here did a nice job of helping me out during my recovery.
Merry Christmas to you, Linda. 2012 will be a nice adventure for you!
I agree the waiting is the hardest part. I felt better when I had a date. I even got calmer as the date approached. We are all here for you. I believe your husband is looking down on you and is giving you the strength you will need. You are not alone. By the way, I would like to exchange info with Mitch Friedman. We are both New Yorkers. Encourage him to start a journal or have him contact me please. Jane Porpora
I just wanted to let you know you have another fan out here. On 12/13 I learned I needed to have my aortic valve replaced. This is to correct a regurg that has progressed over the past 10+ years. BTW, I am 47, and in very good shape.
Even though I knew this day was coming, and had done some preliminary research, the words "time to get it fixed" caught me off guard and immediately filled me with fear. I found this website and your jounal on 12/14.
I am currently in my research phase. I have appointments with 2 surgeons in NYC first week of Jan. I am also considering Cleveland Clinic. I have not yet taken the plunge to start my Journal. So, for now, I enjoy reading yours since our timing is likely the same.
Just wanted to say good luck. I am routing for you and learning from you. Thanks for that!!! Also, I totally agree, waiting is hard.
You are right that the waiting it the hardesst part. My heart goes out to you and I send to a big hug.
I only had to travel 45 mins to the hosptial for my surgery, Dr. Gibson worked at the CC for 10 yrs before moving to California. He's the best!!
I've read your journal and will be following your journey with you.
This HVJ site is a blessing. My only advise: Your upper back/shoulder mucsles will ache after surgery. Make sure you get your back rubs. It's better than drugs.
Hi Again, Linda,
If you have known for some time that this would come someday, you are better prepared than I was. Although I've known about my mitral valve for 30 years, the condition is considered benign 95% of the time and "rarely requires surgery." The folks on this site might beg to differ there! It's good that you are well-researched and decided. The trip may be an added challenge but hey, this is your heart we're talking about and going to CC is definitely worth it. I am a 7 hour drive away so I can't speak for flying. The trip home was hard but I think that was mostly because of the fluid on my lungs making me feel so tired. Check out Gayle Dudley-Coe's journal. She had mitral valve repair close to home in January 2011 that failed and has just had successful re-repair at Sinai in NYC last week. She should be cleared for travel back to Idaho on Monday. She will be able to tell you more about flying.
And yes, waiting for a surgery date is the worst part. I was completely asymptomatic before my diagnosis but developed palpitations while waiting for a surgery date. As soon as the date was set, the palpitations stopped! You are in good hands with Dr. Gillanov. I met him briefly and have been on several of his webchats through CCF. Check Ashok Venkat's journal; Gillanov did his mitral repair recently, and there have been others whose names escape me right now. I will be thinking of you in the days to come.
You won't be sorry you decided on Cleveland! My cardiologist had recommended the hosptal where he had trained for my mitral valve surgery, but even though it is a large metropolitan hospital (Washington Hospital Center in DC) I didn't feel comfortable there when I went there for confirmatory cardiac catheterization. The surgeon was very proud to have trained at Cleveland, but that was 20 years ago. I sensed that he was capable of routine repairs but if he encountered anything out of the usual, he would replace my valve with a mechanical one. I did some internet seraching and decided on Cleveland. The difference in care and diagnostics was like night and day. They are accustomed to out of town patients and can do pre-op testing and surgery all in one continuous visit, if you don't want to travel twice. The coordination for testing is phenomenally efficient and runs like clockwork. I met my surgeon (Dr. Michaljevic, who has since gone to head Cleveland's cardiothoracic institute in Abu Dhabi) the day before. He gave me a 98% chance of repair, and recommended a biological valve in the unlikely event that a replacement was necessary. It wasn't, but the valve was more severely damaged than pre-op testing indicated and would have been far beyond the DC surgeon's skill to repair. So I got to keep my own valve and no coumadin! Cleveland also has a significantly better track record on longevity of repair (95% are lifetime, national average is 90% last 10 years). These are mitral valve stats, but aortic stats are probably equally impressive. For recovery, STAY POSITIVE and push yourself as far as your docs will allow. I got pleural effusions (fluid on the lungs), which made it hard to breathe and extended my hospital stay. I felt so tired from breathing that I didn't fight back and I think that prolonged my recovery. By the time I went to cardiac rehab, I was itching to be more active, but a very conservative nurse there scared me with horror stories about people who did too much too soon. I should have listened to my instincts. I felt I was ready to mow the lawn at 8 weeks but waited until 12 weeks for fear I would "bust something loose." He later went to a conference and asked a surgeon how long sternal restrictions are recommended and of course, CCF docs were right- 6 weeks! So don't let heart surgery destroy your self-confidence. There are alot of people on this site who are living proof that although it is heart surgery, it isn't the end of an active life. On the contrary, it can be the beginning. Wishing you the best!
Vicki Pierson, CCF mitral valve June 2 2011
My Surgeon was Dr. Brian Kogon. My Valve condition (bicuspid) is congenital. He is actually a pediatric Cardiothoracic surgeon. I have a genetic condition called Turner Syndrome. I am only 4'9". Dr. Kogon is used to working on smaller people. As far as tips I say get up and moving as soon as you can within the parameters that your doctors give you. I was orperated on Tues (12/6) and was gently walking the halls on Thurs (12/8).
I just had the same surgery you are gettting ready to have on December 6th. I am doing very well. I am walking daily and even getting out a bit. You can see my journal. Please feel free to contact me if you have any questions.
So happy you're a Tigers fan! We're all excited about the Orange Bowl . . . I work in Tillman Hall and the day after the ACC championship the statue of Thomas Green Clemson out front was covered in oranges. It was very cute!!
I can't believe you climbed the stadium steps with no problem. I huffed and puffed my way up steps and hills for YEARS before my surgery.
I had my surgery on a Thursday and was discharged the following Wednesday and flew back to Greenville on Friday. Flying wasn't a problem - I did use the wheelchair service but other than that, it wasn't any different than any other flight. As Anne said, the CC concierge service was great . . . especially the free limo service to and from the airport. THAT was impressive!
I didn't get any flak about going to Cleveland from my doctors. (They, and other doctors in town, have told me they would go to Cleveland too if they needed this surgery.)
As you go through the process, feel free to email me at email@example.com. And the next time you're up this way, I'd love to meet you!
Get used to it! No one local will encourage you to go to Cleveland. It's business and they want to keep it in their systems. Neither my cardiologist nor my PCP were in favor of the idea. HOWEVER, my last visit with that cardiologist, he told me that the surgeons in his practice were in touch with CC to learn about the procedure I had done. He now refers to my "weekend surgery" and acts like it was his idea all along!
One of the deciding factors for me was when I talked to an old friend who was a doctor at the local hospital. When I told him the decision was between his hospital and CC, he didn't even pause before saying "Go to Cleveland!" He said you go to the hospital and surgeon where they do the most of the procedure that you want.
As Ricki said, the entire experience was positive. And the follow up is that (at 70) I feel terrific - lots of energy and no after effects. I hope it will be as successful for you!
I live in Greenville and went to the Cleveland Clinic for my aortic valve replacement in May 2010. My surgeon was Joseph Sabik and I can't say enough great things about the CC. No one wants open heart surgery but if you have to have it, it's the best.
My surgery was minimally invasive and it wasn't nearly as bad as I had imagined. My recovery was pretty uneventful . . . I was back at work in 11 weeks although, truth be told, I could have gone back after 8. I work at Clemson and it was the summer, so I wasn't in a hurry!
As for the bra issue . . . they gave me a surgical bra and I wore it once. I'm fairly well endowed and it was not comfortable! I actually went braless for about a month . . . wore soft v-neck t-shirts with large men's button-front shirts on top when people were around. (Just the t-shirt when it was just me and my husband!)
Good luck with your surgery and feel free to ask any questions you have.
I flew to CC from Denver CO. No problem at all. Cleveland is well set-up to handle CC patients. Be sure to use the concierge at the clinic - he/she can help with hotel reservations, flights and limo service to and from the airport. The entire city caters to CC!
I had a minimally invasive replacement of my aortic valve. It was absolutely great. Very little pain and I was up and out of the hospital less than three days after surgery. They are fond of the minimally invasive procedures at CC. My Denver cardiologist gave me the song and dance about how the local surgeon would want to do a full sternotomy so they could see what they are doing. Well, CC is the #1 cardiology hospital in the country so I would go with whatever procedure Dr. Gilinov considers the best for your situation. But don't be afraid of the minimally invasive thing - recovery is VERY fast. I flew back to Denver four days after surgery and less than a week later, I was out to lunch under my own power with a friend.
The bra shouldn't be a big issue - I don't recall that I had a problem. Just remember to use you spirometer a LOT! It seems to keep chest and back pain under control quite well.
Anyway, check out my journal and give me a holler if you have questions.
I did have a sternotomy. I wanted the fastest entry and surgery. I had been told that it would be shorter from start to finish. The nurses advised to put a bra on as soon as I felt ready, suggesting that it would give my whole chest a feeling of support. I haven't tried yet. I just love my cute little cami's under my soft long sleeve tee shirts. I know I will have to do it, probably this week-end. Please update after your cardiologist visit. Good luck.
I had my valve surgery 10 days ago. While in Columbia Hospital in New York, I realized that a great number of patients had traveled very far for their surgery. They all seemed to want the same team of doctors. If you end up New York bound, I will give you info. I am sure it is on Adam's blog as well. This is a very supportive group and we will stay with you through out the process. Best of luck. Keep us updated.
Hi Linda and welcome to the HVJ site. It's the best place to be.
I had my surgery in July and was back to work part-time at 6 weeks. I'm a sports massaage therapist. You will be amazed with your new found engery.
I wish you the very best and will follow your journey. May God bless you and be with you always.
Enjoy your Christmas!
Oops. I accidentally submitted before I was finished. As I was saying, my procedure was minimally invasive so that may have helped. Dr. Gillinov, his team and the staff at Cleveland were great. You'll be in good hands. Best of luck to you.
I had my mitral valve repaired by Dr. Gillinov on Sept 22 of this year. I was discharged from the hospital on the 26th and flew home on the 27th. It was fine. I still had had some soreness from the procedure of course, but the flight did not make it any worse. My procedure was minimally invasive (mini thorachotomy