Thanks for your words of encouragement. I am trying to remember where I read it, but are you / have you elected to have a tissue valve? I am fairly active, and the cardio mentioned that I'd likely have the mechanical, but not if it means NOT doing some of the things that I love - like running and biking!
Cheryl, good luck and keep up the good work. Thanks for your guestbook comments to me. I'm recovering more quickly than anyone could imagine. I hope all is continuing to be well with you.
Cheryl, you are just such an angel! Thank you for your many words of encouragement and comfort for both Peggy and myself over the past days. Today I am feeling more like my old self than I have since I entered the hospital. Itching to get home. Almost there. Thanks again, Cheryl!
I really appreciate your info. It sounds like you are doing well. I am still quite emotional about this sudden change in my condition. Did you feel that way when you first found out things had gotten worse? I guess I will know quite a bit more after tomorrow. DO they tell you much after the heart cath or do you have to wait until your doctor lets you know the outcome?
I feel the same way about inviting my family and friends to this website. It really is a sounding board, kind of an exclusive club (that nobody really wants to join) that offers tremendous support. I did order the book and am looking forward to it's arrival.
Thanks again and I hope we can chat more.
Hi Cheryl, thanks for the last couple of posts. The heart monitor should be able to give the docs a clearer picture. Is it a problem sleeping with it? Just read your description of your hospitalization. What a nightmare!! As you said, your poor room mate couldn't help her condition but seems you weren't given any consideration. Not to hear from the hospital is deplorable. So glad you made it out in one piece and sane. Keep smiling.
Thanks for the words of encourgement. I just sent a big wordy message (I often have to apologize for being so wordy - it is just my personality, I guess)to Fran (you had mentioned that you agree with Fran on sort of how I should handle my discontent) - so I thought maybe when you get a chance you could read my response to her because it could have been sent to you both but easier if you can (if you want) to read hers and I won't need to reiterate it to you. But I did speak to a couple of people here (before I saw that you said wait until I get home). However, as I did not rant and rave or even try to throw anyone under the bus, so to speak, I feel it went quite well and I know that Richard and I both are feeling a lot better! I felt I had to act before we left (as well as write a letter, the survey that we will get after we leave)because seriously otherwise it was just eating at me and I know I would have left here a little angry and a lot sad --- now it is better!
It still is a great hospital - unfortunately when one is upset that isn't what everyone else sees - which again is why I needed to address it (I hate conflict which makes it hard), but I made myself on behalf of my sweet sweet husband.
Enough rambling. -- Reading your latest information on yourself - I have a feeling you will hear from my husband when he gets out and able to write as he is feeling much the same as you while still here. I know Adam Pick's book does mention that it takes a while for those feelings of the chest pain, etc., to get better. Again Ricahrd is likely staying another day to try and get that new pacemaker regulated because of the palpitations he is getting.
Cheryl I am coming to realize that it isn't as simple or straight forward - you will have the monitor which may show a lot and it can and will just have to all get fixed. I liked someone's comments to Richard's guestbook - about just think of it as heart insurance and a new lease on life, etc. I am seeing from you that it takes time.
Thank you so much for your interest and sharing.
Richard's wife, Susan
Just read your posting and I'm sorry to hear that you are still having the irregular heart beat. If I remember correctly you were in afib prior to your surgery? Do you feel the same now as you did then? Please know that I am thinking of you and hope you get to the bottom of all this.
Sorry to hear you're having some difficulties with your recovery. If you're like me, you really want to be healthy RIGHT NOW! After all, we did the surgery, and the recovery... we DESERVE to feel better!
I've had a few discouraging days too, but all in all, I'm still glad I did it. Hang in there and I know you'll be feeling better soon.
Thanks for your notes to me, I appreciate them. Hopefully this 24 hour monitor will get to the bottom of it all. You had a repair, not a new valve, right? Stay positive. They say time is a great healer. You are in my prayers.
Fran Zilko (FL)
Thanks for your entries in my guestbook and your words of encouragement and support. You've been a great help to me every step of the way. The road to recovery is an interesting one, that's for sure.
Good luck with your cardiologist appointment tomorrow. How is the cardiac rehab going? I have an orientation appointment with the cardiac rehab folks tomorrow. The plan is for me to start the rehab program next week.
It's great to be able to track you down! Thank you so much for your note in my guest book it means a lot to me to have contact with others in the same situation. I also work from home for much of the time so it has been interesting reading your recovery story, please keep it going. Did you have MV replaced or repaired - I think that I have missed that bit in your journal!
warmest wishes from Penny (Scotland)
Hi Cheryl, Thanks for the tips on what to bring. My Surgery is scheduled for Feb 8, 2010. Not looking forward to the surgery, but Adams book and the various infor from members of this site have made the process easier. Congrats on your successful surgery, and thanks for the support!
Hi Cheryl, thanks for the email. I do agree with you on the suggestion to Adam of finding a way to make it easier to get back to the guestbooks/emails. I am already getting confused and it is hard to remember what to say - it would be easier to be able to see your last response to respond to. I really appreciate your email. I am glad your recovery is going well. Duane and I are having our surgerys done the same day!
Richard from ME (not so far from Canada).
I'm getting ready to leave tomorrow for my mitral valve repair surgery on Thursday. Honestly, I'm glad it's finally here. You can only hold your breath for so long. Thank you for your posts to my guestbook. I appreciate your kindness and prayers. It's encouraging to hear from one who has gone before. May you continue to experience God's peace and healing! I look forward to hearing how you're doing when I resurface.
Thank you so much for sharing your story and journal....I am new to this and stumbled upon it all whilst surfing the internet. I am 9 weeks post op after mitral valve repair and maze procedure. If you read my story you will see all the details.I am so grateful for all the info but wish I had read it and seen/read the book before I had the surgery....it would have certainly helped make my recovery a little easier.....I kept feeling that I should have been doing more and yet after reading all the info realised I had been doing extremely well. So am very grateful.
Take care and keep writing...it certainly helps to keep me going.
Hi Cheryl, Thank you for your note. No referral I done it all on my own! I never heard of or even had dreams about Cleveland Clinic as being my next vacation destination, My doctor that I fondly nicknamed "General Patten" had me do a stress test, walked in the room said I did real good..... And wanted to know if I had a plan... I asked for what? And he replied. To get my heart valve fixed. I had no plan, so he suggested I look at the best and go from there. He mumbled something about Cleveland, I goggled it, and Robin Williams and Dr. Gillinov names came up. I found the web site, emailed them a question on how to get on board and is Robin Williams that funny? They had such interest and compassion it was amazing. I had no "referral" except that I really enjoy Robin Williams. Cleveland sent me a note requesting my medical records, I sent them, and now I am have a date with Dr. Gillinov on St. Patrick’s Day and we’re not drinking green beer and dancing...I got lucky with our insurance, Cleveland is “in network”. My next choice was. Dr. Chin’s valve repair and acupuncture center in North Korea, but I don’t have the right papers….Dr. Chins logo “No one leaves this country” worried me also, so Cleveland here I come. I bet its cold were you are??
Happy boating-I have a 1985 Carver Mariner and we are “land locked” on Grand lake in Oklahoma
Hi Cheryl, thanks for the post in my guestbook. I see your responses frequently to others. You are always helpful and helpful in what you have to say. I am told I will be getting two tissue valves (aortic and mitral) and will be able to go off coumadin after the MAZE proceedure. I have been in afib for 14 years and on coumadin. I have done just what you say, have continued to eat all the greeens I want and my INR stays between 2 & 3 which is where the cardiologist wants it. I will be happy to be off of it after all these years. Great to have supportive husbands,family and friends!
I know it has been awhile since I posted anything to the Journal but there is not really much to tell. I checkit aleast 3-4 times per week to see how others are faring and it seems good. Anyway, I finally go back to work tommorrow. My wife is is happy to see me go back and I am glad also. If there is any blessing to come out of all of this, it is that my kids and I have become extremely close. Conor, my little one, was my rehab and I had more fun doing it with him than anything else. You had told me when I was first diagnosed that the kids would be alright. You were right, they've been great. Thanks so much for your notes and support, I've really appreciated it.
Hey Cheryl... Thanks so much for the encouragement! I signed in to this site because I knew there had to be people with similar experiences who would totally understand what I am going through. I enjoy reading your and the others journals. BTW... you look so much younger than 60!
God bless!! Kathy J-P
Just wanted to thank you for ALL of the encouragement to me and everyone on the site that you can get to =O)God loves you and so do I. I still do not have a date but I am excited that I will be doing my follow-up from my minor surgery on Friday the 15th. After that, I am released to set the date for my AVR. Thank you, again.
Thank you for your follow-up response to me. Your wise advice, given as somebody who has bravely faced this ordeal, gone through the surgery and now the recovery process, is invaluable.
Thanks for the tip about bringing PJs for the hospital stay, which will help compensate for the hospital-issue gown and its many design flaws (from the patient’s point of view anyway). Great advice, and I can put my warm flannel PJ pants to good use.
I can’t tell you how much your words of calm reassurance mean to me. You are right on in pointing out that I’m fortunate to have a “Plan B” option (valve replacement), if a repair isn’t feasible. Either way, I know I will be fine and can expect a long and healthy life after the operation.
Glad to hear that your cardiac rehab is going well. Looking forward to getting started with that when I'm about 6 wks. post-op.
Iam doing well and I hope you are. It is really cold in NC this winter what is unusual. I know it is not for Canada! :-)
The doggy got spayed yesterday and she is recovering fine. She is a sweetheart. I can't affort to go to rehab to be honest. It is a 3 month deal, 3 times a week, at $40 a pop, what comes to about $1,500. After paying my copay of almost $5,000 for the surgery I can't affort rehab. This is just my part plus what the insurance has to pay. I miss my German health care sometime - Ha, Ha. I just do my own rehab and walk Abby more!Have a good weekend. Helen, NC
Thank you for sharing your experience with us. They are really inspiring. I am keeping up with your journal and look forward to more postings. I am glad that you are doing so well...Awesome! When I get to share mine...I hope for such success...Thanks again.
Yesterday evening I was going through the various journals on this site and I came across your entries. I was reading your story and remarking to myself that there are many similarities between my mitral valve situation and yours. I decided that I would introduce myself to you by signing your guestbook. While I was preparing to do that, my computer gave me a message that I was receiving a new e-mail. Well, guess what…it was a notification that I had a new message in my heart valve journal, and that message was from you! I believe that’s called synchronicity, or great minds running along the same channels anyway.
Thanks so much for your words of encouragement as I prepare for my surgery next week (Jan. 14th). It is so helpful and reassuring to hear first-hand the experiences of others who have gone through this and had positive outcomes.
Your heart valve diagnosis sounds very similar to mine, as well as the progression of events leading up to your surgery. My mitral valve prolapse and regurgitation got quite a bit worse in a rather short period of time this past summer. I'm about your age (turned 59 in August '09). Like you, I was all set for surgery recently but had to postpone due to infection, in my case a bad chest cold.
So, by this point I have had way too much time to think about this whole thing and now I just want to get it over with. I think I’ve processed all the fears to the point where the surgery itself will be a tremendous relief. I’m so tired of being on this roller coaster and I look forward to healing after the surgery and as you put it, being “better than fine” when I get back to normal. I’m sure I’ll have more energy and I’m looking forward to that. The regurgitation from the valve has been a slow and subtle drain on me that has gotten progressively worse over time. My big moment of realizing something was just not right was being on a walking tour of the old upper town of Quebec City and not being able to keep up with the other walkers. I told myself I needed to get into better shape (which Is true), but I now realize it was more than that.
I was very interested to read about your experience of resuming work at your computer at home after your surgery. Like you, I work out of my home and do a lot of work on the computer. I help my husband in his market research consulting business and have been his “right hand” for more than 10 years. We’ve been worried about what to expect with regard to my ability to get back to work. We realize it will be gradual and I will have to pace myself and take frequent rests. I know everybody’s experience will be different, but it was encouraging to hear that you were able to get gradually back into your work routine after a couple of weeks. Of course, the most important thing will be to take the time I need to heal.
Thanks again, Cheryl, for your encouragement and positive thoughts. I will stay in touch.
I am doing really good. I am working part-time because I still get tired in the afternoon a little. I was at work 1 week and 3 days after my surgery. Stupid I know. I had to do some things and went back home to work on it later. The only problem I have is my fast heart rate. I can't tolerate the med for it so my doctor told me just to wait and let my heart get used to it working properly. I think my surgeon took pics because he does a lot of research in this field and my murmur was pretty bad. I got a new doggy from the local shelter and she keeps me up and running. Our x-mas gift!!
Merry Christmas to you in Canada and Happy New Year! Helen, N.C.
To answer you question concerning the heart rhythms, go to www.preventing-a-heart-attack.com, then scroll down to heart rhythms on the left side of the home page and click on that. It shows you different EKG strips of Normal Sinus Rhythm, Atrial fibrillation, Atrial Flutter, etc. with some basic explanations. I found out about my "bum" mitral valve when I went into Atrial fibrillation in July. I had a Maze procedure done also when I had the valve repaired which is a correction of the electrial pathways in the atrias to stop the A fib. It seems to have worked as I've been in a sinus rhythm since my surgery. Hope this helps.
Sinus Rhythm is the "normal" regular heart rhythm that everyone should be in. The beat is regular with no irregularities at all. Normal is considered between 60 to 100 beats per minute. I'm running in the high 80's but my cardiologist and surgeon are both happy with it. I get another echo next month and hopefully an EKG in sinus rhythm. I was worried about the kids pre-op but they have turned out to be a blessing post-op. They keep you busy.
I'm glad to see you're doing cardiac rehab. Please let us know how it is going as Ken is looking into that as well. Happy Holidays to you as well and glad to here that your cough is better!
Would love to hear more about the shopping in preparation for the surgery. For example, I was thinking tank tops for under shirts until I could tolerate the bra again....Help????? And Thank You!
I just want to thank you for all the tips and information that you have posted over the period of surgery and recovery, I am curious because I remember that you had the right sided back pain which was the pleural effusion after you got home, how long did that happen for and what did you do to get over it. Do you still get short of breath? Also how long did it take for the swelling in your arms and legs to go away? To answer your question I had both mitral leaflets repaired instead the originally scheduled 1 and a MAZE procedure for the A Fib.
I read through your entries again and I try to find out if you got a repair or did they replace your valve? Thanks for the bra tip but my twins are only a 36A so I hope I can do without one. I did not think about the water gain - I don't look forward to that. But everything is temporary so you made it and I will, too. I think I have to start packing my stuff and get ready. Mentally and physically, too. I want to eat my Thanksgiving turkey with my "new" heart and enjoy it!!! My nightmare is that I can't go to the bathroom and they have to give me "the pan" - any problems with that? I know they give you a cat for a day or so.
I am glad you "made it"! Thank you for your tips because I was thinking about the same line "what to carry" and how to deal with things, like hair, washing etc. I will carry jogging pants that I like to cover my six and i-Pod etc. Hope you feeling better. I am really getting nervous and it is still one month to go. I did not think about a fanny pack - I do now :-) Take care and best wishes to you. Did you take pics? I think a might.
Thanks for the words of encouragement regarding the family situation after I'm "done". My 8 year old is going to be fine and my wife and I have talked about how we will "handle" him. My little guy is autistic so he won't understand what is going on. I think I'm most nervous about him and when he acts up because my wife sometimes has a hard time when he gets in one of his moods. I'm sure we will muddle through. As for me being a good patient, don't you know that nurses and doctors make the absolute worse patients. We know too much. I is going to be weird for me to be on the other side of the fence so to speak. Anyway, enough about me. Please know that my thoughts and prayers will be with you on Tuesday. I'm sure that everything will turn out well. Keep in touch.
Cheryl, I'm right behind you, time wise, with the same problem. I too noticed a sudden change when I hit the 50% point although my problems are confined to the mitral valve.
I had a kidney transplant 3 years ago and one of the lessons I learned in that experience is use the pain meds while your in the hospital. Especially after you wake up from the surgery and the first thing they want you to do is get out of bed.
I hope everything goes well. I'll be following your journal.