Thank you so much for your well wishes! I came home from Mt Sinai on Saturday evening. I have to say that the surgery was so much more than I could have ever imagined. I don't think that there is anyone who could prepare you for it. I did decide to do the mini sternotomy, as it seemed to be the safest and best access to the mitral valve and also give the best repair.
Dr Adams and his team are absolutely wonderful! I can't thank him enough for fixing me and for also being such an understanding and compassionate surgeon.
Since I have been home, I had a visiting nurse come on Monday and it turns out I was very dehydrated which made me feel not too well. So, I stopped the lasix and also stopped taking Percocets(they put me in a fog) and drank Gatorade for the rest of the day and now I feel so much better! My incision is only sore when I cough thankfully.
It is amazing how true it is that each day you feel a little better.
Thank you so much for the information. My surgery is scheduled for Monday, June 18th. I had my pre op testing done yesterday at Mt Sinai. I think I am going to opt for the mini thoracotomy. How big was your incision? Were you in the hospital 5 days?
Thank you for your response. I am happy to hear you are doing well! Dr. Adams was wonderful! He was so thorough and obviously an expert in his field. In my situation he said he can use either approach and explained both. Did they have to break any ribs? If you can, can you email me at firstname.lastname@example.org. I would love to hear about your experience!
I just joined HVJ this week, as I am getting ready for surgery next month. A few weeks ago I made a list of all those I could find the last few years with MVR, and I have been reading your journals.
More and more I am running across stories about repair, rather than replacement, and I wonder whether or not you were ever told that repair was not an option for you. I do not have prolapse (nor did I read you did), but did have rheumatic fever as a child (and I don't think you did). This seems to be the reason the replacement is being looking at instead. Needless to say, I would prefer a repair! Any insight you can give me on this based on your own experience would be appreciated. I know we aren't medical people but we sure can help each other out!
Hello, Theresa -- You were kind enough to check in on my Guestbook and invited me to read your journal. As soon as I got here, I realized I'd already done so....I put in a search for Mr. Sinai and ended up reading the entries of several folks who'd had their surgery there. It's very inspirational to read success stories such as yours -- gives me a lot of hope. Congratulations on your anniversary!
Some how I didn't get the email telling me you had written in your journal! Big time congratulations. We who have been there will continue to count our blessings daily. So glad to communicate with you by email. Hopefully we can meet some day. Keep smiling.
Congratulations on your second anniversary. I'm so happy you are keeping well and are back to living a full life. I too never fail a daily time of prayer where I give thanks that I've been blessed with a new chance to live a full and heart healthy life.
I see Susan told you of our small HVJ reunion in Florida a couple of weeks ago. What a blast! We will always have a lifetime connection with the wonderful support group we met here and will count each other as friends always. Someday we hopefully can meet more of our friends here. We'll soon get some pictures posted.
Long time no talk to. Congratulations on your 2 year Anniversary! Richard had his the end of January.
We have thought of you often, but Richard does not write much on the journal now --- but he certainly still stays in touch with what is going on in it and reads and tells me, and actually asked me to send Congratulations to you tonight!
I thought you might like to know that we went down to FL in Feb and on Feb 18th we met with Duane and his wife Peggy, and Fran and her husband Peter and Cheryl and her husband Pete! "4 heart valve" journal buddies through their time leading up to and through their surgeries. I am sure you know Duane, and also Cheryl (from Canada) and Fran from FL, and, of course, Richard. It was pretty amazing and I must say it was a most heart warming (no pun intended) weekend and we all got along very well and enjoyed one another's company and the spouses were just as nice and wonderful as the HVJs we had been corresponding with these past few years. We all even went to Duane's Church on Sunday - again an amazing time,spiritual and reflective and yet fullfilling of the promise of good hearts and friendship.
Richard and I wish you continued good health as you are a pleasure and were always so thoughtful and enjoyable to correspond with in the journal.
Congrats on 2 years! Wonderful! I am having surgery next Wed March 7th at Mt. Sinai with Dr. Stelzer (Ross Procedure). Hope you continue to do well for a long time to come.
Jeff Shebovsky, Orlando
Thanks for your post. This is my first time using the new "Respond To Guestbook Comment" feature. A very welcome addition. I didn't know if you get notice that I've responded, so I'm posting it on your guestbook now. I now see this response feature with the email.
I am subscribed to your updates, but for some reason I did not get your one year post. So I made sure I was subscribed (I was). And I read your post. Great job! And I humbly thank you for mentioning me. That was so kind and gracious of you. Glad you are doing so great!! Keep it up!
Yeah, Richard & Susan are great! Hey, let me know if you ever travel to FL.
Thanks for your good wishes on my recent issues. I will keep everyone posted. Come what may, I fully trust in God.
I was surprised to get your note. Did you read my note to Diana? I did not put my info on my journal as didn't want my problem to be a concern for others on the HVJ and friends who aren't aware. But, thanks for your concern and well wishes. Every day is a blessing for each of us.
Hi Theresa! I hope this note finds you doing well. So sorry to hear of your loss of a dear pet. It's always so hard to give them up.
I am reaching out to you to see if I could ask you a favor. I spoke with a young woman this morning who needs mitral valve repair. She lives in Charlotte, NC, and is considering both Dr. Chitwood at East Carolina Heart Institute (my surgeon), and Dr. Adams at Mount Sinai for minimally invasive surgery. I told her I would reach out to you to see if you would mind talking to her about your experience as a patient of Dr. Adams'. If you feel comfortable with this, please email me at email@example.com. I will then give you her contact information.
Let me know how you're getting along. We're almost at a one year now since surgery! Can you believe it? It's gone by so quickly...
so nice to meet you- yes, we are close as I am south of 33 in Manalapan- almost Freehold.
My husband is also staying in the city during my hospital stay. I see you opted for a different approach for the incision- so far, I have not been given that option- I do not think my Dr. does that-oh well. I would love to call you some time- please let me know your telephone # if it is OK
so glad to see you are healing well and I am so sorry for the loss of your brother
So sorry to hear of the sudden, unexpected death of your cat. Being a pet lover I can sympathize. We've had a dog and 3 cats (not all at the same time) and grieved when they died, although none died suddenly at an early age. They do work their way into our hearts and I do believe there is a place for them in heaven. Let's look forward to a year of health, happiness and new beginings.
Thank you for your lovely Christmas wishes. It was so good to hear from you and know that you are also doing well. We have to count our every blessing that after all is said and done, we are healed. I so appreciate hearing from my dear friends that I have met here. Each and every one will forever be in my prayers. I hope your Christmas was full of happiness and pray your new year to be happy and totally healthy. Thank you for keeping in touch.
Thank you for your kind message. Glad you are using the walking tapes. I walk a total of 10 miles with them (in 3 sessions) and feel I get a good work out. Wishing you a blessed Christmas and healthy, happy 2011.
So great to hear from you. It's been a long time, hasn't it? Wonderful that our lives have gotten back on track and just so busy. I so appreciate your reflectivenss and am thankful to God for your excellent recovery too. He has truly been good to us. Merry Christmas to you and your family! Are you on Facebook?
Hi Theresa! I feel so guilty for not dropping you a note sooner. I have had such an easy recovery compared to many in our HVJ community, and it honestly makes me feel guilty. I have gained so much stamina, and my resting heart rate is now in the 60s. My cardiologist does not even plan to do another echo until next spring--though I'm hoping to convince him to do it in December. I did have one hiccup a month or so ago when I let work and projects around the house interfere with my workouts. I started experiencing some tachycardia but got right back into my cardio work and things settled down immediately. So I've learned that even though I feel great I have to keep up with the cardio work.
I was really upset by Lori's story. There is not a week that goes by that I don't think of her and her family. How lucky we all are to have survived. I thought heart surgery was fatal mostly with the elderly, but now I know better.
Hope you are doing well and continue to get stronger each day. May you and your family have a wonderful holiday season!
Thank you so much for the warm welcome and for reaching out to me! It means so much!!! I have opted to not share too muc of my news about having to undergo my preocedure until I have decided on a surgeon and have a date, so it feels great to be able to share!!!
I am happy to congratulate you on your graduation!! You are an inspiration and I am sure a tremendous resource to others who are in the process right now. I loved your message about pushing no matter what!!
I am so sorry to hear about your recent loss; you have my deepest sympathy.
You mentioned the beach in NJ; what a beautiful place to be laid to rest.....very dear to my "heart"....my husband Bob and I are building a vacation home at the Jersey shore in Avon By the Sea.....it should be done before I have to have my surgery and I will be able to rehab some of the time on the boardwalk down there, which ain't bad!
Thanks again for making me feel so welcomed. You are a very sweet and compassionate person!!!
I really was scared. I really thought that I was dealing with a blood clot in my shoulder because it was the same side that my central line was in. But, like yours, in 2 days it was gone as fast as it came. Really weird!
My fever they feel was a severe reaction to the flu shot. And I'm finding out that a lot of people in the area are having bad reactions to the flu shots, too. At least I know that I'm good and healthy and no blood clots anywhere, and no endocarditis.
Good Morning Theresa
I was inspired to read your story this morning. I am so happy to hear you are doing well. I related to you immed as when I was 38 and had my first open heart my son age 9 followed and had his open heart 6 mo later. He also had just survived mengiococcal septicemia the most dangerous form of bacterial menigitis. He was then and still doing well at age 34. Needless to say he and I have always since our experiences share a special bond with each other and life itself. I am 7 wk postop mitral valve replacement 13 yrs ago mitral valve repair. I had to chuckle when I read that @ age 53 you were one of the youngest in rehab class. My last rehab I was in my late 40's and I too was the youngest by a long shot and I remember well fellow patients felt so sorry that I had already had 2 surgeries. I am always just glad to be alive each and everyday.
Susan V NC
First of all I want to thank you for the very touching message you wrote in my guestbook. It really meant a lot to know that you felt that way. Sometimes I feel that my entries are just downers on people as I read how postive they are.
Next, CONGRATULATIONS on your graduation from rehab. I feel proud for you and I know you must feel great to have gotten through that. You are also one of the people on HVJ that I think of the most.
Here's to continued good health for you and may it continue to improve every day.
Hi Theresa. Thanks for the reassurance on the metropolol. I was hoping to get off blood pressure medication altogether, but have come to terms with needing it for my heart rate & it's good to know it helps yours. Take care, Joy
You have left some wonderful sentiments in this most horrible and sad time here on HVJ. I am so miserably sad, as we all are, at this awful event. I wish I could do something, anything, to help Adam and his girls. I read her posts from the beginning and was watchful during the day of surgery. Still, I thought it would be OK. I could hardly bring myself to read this latest post. So devastating. I hope the girls will read her guestbook one day and know they had a very special mom.
Thanks for writing. Lori's death is a real tragedy for all of us, especially those yet to begin their surgeries because it brings home so clearly our worst nightmare come true. Our confidence for our own well-being today has been seriously shaken and now many tears are being shed for this young lady and her beautiful family. How horribly sad.
thanks for connecting. I just left my message on Lori's site. Yes, we are all blessed to have made it through and yet this young wife and mother didn't. I'm crying again as I write this. I know it is not for us to understand God's plan for us. Do have to believe she is working with all those beautiful Downs children who are with her in heaven. Keep in touch.
Hi Theresa, thanks for your message. I got my heart rate down to @ 90/95 when I am resting. And no I don't take any meds. Just my 81 mg aspirin. I am very lucky. Tonite is Tai Chi night and I hit the track again. We see how it goes. Wish me luck - great you doing well, too. I did not believe that it will take time for the heart to heal :-) but it does! Helen, NC
Great news about the upcoming retirement. If you ever want to get down to the south gulf coast of FL we'd love to meet you and show you our area. We moved to Bonita Springs from Williamsburg, VA (a really pretty place). We love it here. Have a sister on the east coast. but our daughter and family live 45 minutes from us and that was really important to be near our only grandson. We live in a planned community VillageWalk Bonita Springs. You can find it on the internet. We have all ages here and it's one of the things we like, not a retirement community. This is not really the best format for this, but you can email me at
firstname.lastname@example.org if you ever have questions.
Thanks for the compliment. This was actually the second time Duane and I met. In April, 2 weeks after my surgery and 2+ months after Duane's surgery, he and Peggy stopped by on their way home from a southern FL vacation. They are both such special people and being a minister and someone who has such love for the Lord makes him even more special. I really wish I could meet the special people (like you) who I have met on this site. We could have quite a reunion.
How have you been keeping up with your rehab now that you don't attend a formal class? They tell me that ideally one should get 40 minutes of cardio 5 times a week. My classes won't end till early September and I hope I will be able to keep it up after that. Take care.
Hello, Theresa. I want to apologize for not getting back to you sooner. By way of explanantion, not excuse, I should tell you that I work two jobs and also have to keep the house going on my own, so the time I can spend on the computer is relatively limited. I have to limit it, or I would never get anything done! Once I start chatting with people on the Internet, it is just too hard to stop! But I very much apprecated hearing from you, and congradulations on your achievement in completing the cardiac rehab. I know it must help you feel that you are on your way, but I suspect you believe, as I have come to, that we will always be "heart valve patients".
So, you see, I have stopped thinking in terms of when I can put this all behind me. The answer to that is never, and that's ok.
I have made other progress as well, due in no small part to the advice and support I have been given on this website. I found the strength and the opportunity to share the truth with my friends that so far at least, the operation has proved a "limited" success and I left behind all the feelings of guilt I felt for that. After all, I have done everything I could to make it work. Although cardiac rehab was not an option for me, I have resumed the active lifestyle I had and I am learning to live with this coumoudin that I still hate and always will. I have turned to my other doctors for help with the various problems it was causing and I have not been disappointed. I am tackling the issues this operation left me with one by one, and I no longer feel alone in doing it so I think I have made quite a bit of progress since I first started on this website.
And if I sometimes feel resentful that this had to happen to me, I will just be angry about it for a while and move on. I don't know what the end of this road looks like, or how long it will take me to get there, but all the baggage I have to carry on it sure feels lighter now.
Thank you for your kind words, and your offer of support. I am sure I will still be needing it for some time to come. If I might offer a bit of it myself, whenever I am having a bad day, or night, I remind myself what one of my journal friends wrote me, we are not perfect but we are "fixed". You don't sound like you have very many bad times now, and that is really great, but if you do, you may find it helpful to remind yourself, as I VERY often do, how much better you are than you were. I don't need to feel perfect, I only need to feel "fixed".
Hi Theresa. Thanks for the advice to take it slow & steady. I will absolutely do that. Right now, I'm just tickled pink to be home. Nice hospital, but I wouldn't want to stay there any longer than absolutely necessary. Keep feeling better & better - Joy
Good to hear from you again. I'm doing terrific, I feel like a new person with a second leaf on life, and it is so cool. Incision is still quite tender along the top, but the doctor said that it could take a while before that goes completely away. I can deal with that, just will take a pain pill at night before bed so that I can get a good nights rest. I don't take anything during the day unless it gets to hurting too much. Thanks so much for your support.
We post-ops certainly do appreciate the work you had to do to get through rehab. It takes courage to begin, willpower and determination to continue and finish. I believe rehab is such a positive experience giving back mentally as well as physically. I'm just glad to read you are doing so well. Enjoy your summer.
Congratulations on your graduation, Theresa. It's good to read how well you are doing & what a nice touch - a graduation ceremony. I am looking forward to rehab once I get my surgery & some recovery time out of the way. One step at a time. Be well - Joy Vera
Has time gone by quickly, or what? Doesn't seem that long ago that I was reading about a really nice dinner in NYC before your surgery. Or do I have you confused with someone else? I have seen a couple of people finish their rehab where I go and they get a hug and a paper, no hoopla. I can already see the difference after 13 visits for me, it's a great motivator. You've been very helpful to so many on this site.
Congratulations, Theresa! Party! Party! In our program, graduates get a balloon and a T-shirt. Much lower key. You did great, girl! Glad you're feeling so well! Thank you for your kind note in my guestbook. We leave tomorrow morning.
I'm making great strides, even with the few setbacks I've experienced. All part of the healing process. I didn't think traveling up our road would be a problem and didn't think to take pain meds beforehand. Will know better next time, that's for sure. Otherwise, I'm feeling pretty darn good.
Thank you for your encouraging words. You and Fran are not the first to suggest that I am underestimating my friends, and I will,maybe a little at a time, confide in someone because I feel how much it has already helped me to 'say the truth out loud' to the great people who are involved in these journals. I really feel like I am not facing this alone for the first time since I came back to my own home after the surgery. And that makes a lot of difference, more than I thought it could.
Right now, the cardiologist has me on some medication, Coreg CR, that is designed to help my heart increase its efficiency, and when the second echo didn't show the improvement that he wanted, he doubled the dosage, but that is all we can do for now because it also lowers my naturally-low blood pressure. He wants to give this up to six months to work, and I have another echo scheduled for Dec. I haven't asked about beyond that. I think it might make things harder right now for me to know that I might have to face something like what I have already been through. I want to concentrate on appreciating that I am better-MUCH better than when I went into the hospital. And while my progress six months out is not the kind of dramatic progress that you feel when you are able to take that first long walk or get your groceries out of the car for the first time, being able to do what you need to is progress. I'm going to pay more attention to that kind of progress and I bet those feelings of frustration will get under control.
Thank you for your kind concern, and I will let you know of my 'progress',
Hello, Theresa-this is Theresa. Thank you for your kind words-I am new to this site, and to to Internet communication, generally. I must admit I felt a little apprehensive doing it-why would anyone want to hear about my issues, and what exactly is the wisdom I have to offer anyone else? But I guess I am just tired of feeling alone in dealing with this-family and friends can only understand so much because they have not been there. So I can't really tell them the frustrations, and the anxieties I feel. I can't even tell them that the doctor says my heart output is not what it should be in my last two echos. They stood by me so much during the surgery and until I could be on my own. How can I tell them about any more of my problems? They have already gone above and beyond the call and I feel like I owe them a complete and total success. And I just don't feel like I have it when I get so tired I can't even walk across the room without having to sit down. When they ask how I feel, I can only say, Just great, when I may feel anything but.
I am glad to see you were able to have your valve repaired, instead of replaced. I kept telling myself that was going to be me and when I woke up and found it had been replaced, I was very disappointed. This medication that I now have to be on for THE REST OF MY LIFE is as difficult to live with as I had feared. It is scary-too much or too little and you could be dead-and it interferes with every thing else I need to take. I find myself suffering the migraines and the arthritis because I am too scared to take the medications, even thought the doctor said I could, as long as I don't do it often. I want to just be grateful there is medicine I can take to keep me from having a stroke or heart attack, but that is humanly hard to do when you are suffering a debilitating migraine that has you prostrate on the bed in tears and enduring a menstual period that lasts more than a month. I get so frustrated that I have stopped taking the coumoudin on my own, more than once. The doctor gave me a stern lecture about not doing that again. Which made me even more scared of this medication.
Wow! Now you're sorry you signed onto myn page, aren't you? Well, thanks for listening. And I really don't want to sound ungrateful-I know I am very fortunate to be here and I will get past everything else.
I haven't been on line in a while and was excited to see how you are doing and unfortunately learned of your brother-in-law. I am very sorry to hear it and I am sure everyone is still reeling from the overwhelming loss.
Oh it sure brings a person down a notch or two when one starts belly-aching about our every day trival issues, doesn't it? As you said, all the heart valvers that were fortunate enough to have had their problems discovered and "fixed" are extremely fortunate and I believe from what you all have gone through - you all know it!
Hope you are doing well and your sister-in-law will heal as time goes on.
Richard's Wife, Susan