Dear Amanda,
I found out about my mitral valve regurg while getting worked up for a knee replacement. I had a pre-op murmur which the doctor didn't seem to think important, although he had not heard one before. I was approved for surgery but when the anesthesist listened to me he was quite alarmed. There was a hurried discussion as to whether one should proceed. They did and I did fine but was scheduled for a cardiologist appointment before leaving the hospital. The workup showed a severe regurgitation. I had been symtom free except for some fatigue so it was really hard for me to face a surgery I didn't know I needed.
We have a wonderful heart hospital here in Sioux Falls but after investigating different approaches, I decided I wanted the minimally invasive approach so referred myself to Mayo Clinic in Rochester.
Minimally invasive did not however translate into minimally painful. I had a very rough 24 hours after coming out of Intensive Care.
However, after my chest tubes were pulled (and that was no picnic) I had immediate joyful relief and have been only on tylenol and advil since. I love not being zonkered on heavy drugs like I needed for my knee surgery. This is my sixth day post-op. I was discharged in three days, stayed overnight one night in Rochester then rode back home - a three and a half hour drive. Except for weakness and difficulty sleeping I am doing well.
They were able to repair my valve, which the doctors there believe to be the best choice.
I should not have to need any furthur repair.
In getting ready for surgery, Mayo Clinic sent me relaxation and stress relieving tapes and music. That helped calm me. I also went for a Reike session which was very calming. I had a prayer support group that was and is still very comforting.
When I realized the only way out was through I finally gave myself over to it and let go.
Wishing you the best,
Mary Ann Marko
On May 19, 2010...
Hi Amanda
You really do have some legitimate concerns especially regarding the pain aspect of it. Seems it would be beneficial for you to have a frank discussion with your surgeon about your concerns (low BP and not being able to have needed medications). You are not the first patient they have dealt with who have these issues. They will work something out as you will never recover if you're in constant pain and anxiety and they would not want that for you. Any chance you can get some meditation/guided imagery tapes to listen to? They helped me immensely. You are in my prayers.
Fran Z
On May 19, 2010...
Hi Amanda
I was back to work, in my home on day 13. I do secretarial work and I figured if I could sit, I could type, I could answer the phone etc. etc. I worked each day from about 9-2 or 3 and then napped and called it a day and after a couple of weeks like that I was back full time and napping a little later. On the way home from the hospital we stopped and met the family at a Swiss Chalet for dinner (my husband doesn't cook at all - not even sandwiches so it was survival. He does warm things in the microwave so several friends had loaded our freezers with lots of meals.)
For me, and I'm 61 - the worst pain was later the first night when I was really starting to come around. The ventilator tube had been removed and I do remember asking for more drugs but it was short-lived and on day two I was quite comfortable and even got out of bed and began phoning everyone, especially my 85 year old mother so she could hear how strong my voice was. Day three I was bright enough to start checking as to what all the pills were for and asked to be taken off the strong pain meds and changed to Tylenol Extra Strength. But, we are all different. Try not to dwell on the pain aspect overly much. I thought childbirth to be a lot worse.
If you check out Adam's web site, check for Dr. Gillinov's question/answer session he did with us heart patients and he goes into great detail about the differences between the valves and why he would choose a certain type. If you can't find it, I'll get back to you with a copy of the transcript. I had a repair but I did have to be prepared for a replacement choice and my doctor chose mechanical but that is based upon my lifestyle. Dr. Gillinov reports wonderful advances in the re-replacement of the tissue valves and I would never have even considered such. I think you might find it very informative.
Managing the Warfarin/Coumadin isn't such a big deal, even with the frequent clinic visits.
I can see where this totally surprised you and absolutely the news would send you into a tailspin. You deserve to take some time and panic and cry and rant and rave but then you have to put that behind you and start preparing yourself mentally. It's not being terribly courageous - it's being accepting of the situation.
I tried putting my diagnosis into perspective such as thinking of some of the things that would have been worse to have been diagnosed with. That may not be the greatest way to be thankful for a heart diagnosis but it helped me.
For the right surgeons, this is totally routine so let the doctors worry about how they are going to fix it while you worry about getting your house in order etc.
When I have something on my mind I read and read 'till I fall asleep as opposed to letting my mind wander to think too much. I just say keep occupied as much as you possibly can.
I'm glad you found this site as you have lots of caring people to help you through this.
You cannot change what is going to happen to you but you can control how you are going to handle it.
Chin up.
Cheryl, Ontario
On May 19, 2010...
Hi Amanda,
I love the picture you have up! It was so great to hear from you on my guestbook...of course I didn't mean to make you cry, but I am the same way now, I cry at half the entries I read. The people on here are wonderful! I always wanted a sister close to my age-Now I have a sister by heart:)
Thank you for what you wrote and I will be following your journal entries.You are in my prayers. I look forward to hearing from you and take care of yourself!
Kimberly S.
PS-Has the freaking out subsided any?? Mine comes and goes...at first I felt like June 3rd was so far away and now it seems just around the corner!
"Courage is not the absence of fear, but rather the judgement that something else is more important than fear."-Ambrose Redman
On May 19, 2010...
Hi Amanda,
My name is Melany and I am 36 yrs old. I have two small children 4,2 and just had my mitral valve repair on April 8th. All went well. I was able to have the minimally invasive surgery under my rigt breast. I am in rehab already (2wks now) and doing well. You can check out my journal for all the details.
I will keep you in my prayers. I had the same reaction at first. I cried for 3 days, and I am a paramedic! Anyhow, I found that this site, my family, friends and a good surgeon and most of all God, is all you need. There are many wonderful people here and they all are loving and kind and ready to help when you need it.
Melany
On May 18, 2010...
When I found out that about 5 years ago that I would need surgery (one doc told me I needed it that summer, I've since been told next year I'll need it) I cried a lot. It's a lot to handle. It is incredibly stressful. I haven't had the surgery yet, but it seems to me that the psychological part before the surgery might be the toughest part. I'm just thankful these journals and to see everyone getting through it.
I'm freaking out with you,
Patrick in STL
On May 18, 2010...
Amanda,
I had mitral valve repair under the right breast and my recovery and surgery went very well. I had the surgery March 2 and am now in cardio rehab. By the way, Cheryl is the one who went back to work 13 days after surgery...she gets the credit. Check my journal if you want to read about my experience. Any questions feel free to ask.
Theresa Callanan
On May 18, 2010...
Hi Amanda,
You are not alone...I have 17 days until surgery and I try to keep my attitude positive because that is what everyone tell me will help. But I actully feel like I am crumbling somtimes. I am scared to death right now, this started yesterday more than before. I like you, am afraid of the pain and the unknown after surgery. I am EXTREMELY afraid of waking up during surgery because I have a problem with anethesia-it doesn't seem to work on me:) Having this site and my family and friends support has been the most helpful. I
In your reference to repair versus replacement. At our age, I will be 40 next month, I was told the repair will do wonderful and has an excellent success rate. The recovery time is less, less pain, less scarring, etc... I also don't understand why the scar is going to be on the right side of my breast, but I will probably find that answer soon. The good news is I have also heard you will feel good right away health wise and we will be able to do so much more! Like your snowboarding which sounds like so much fun. For almost a year now I have been symptomatic, so I can't do much of anything including just walking around the block or shopping.
We can both share our concerns, fears, and good things and lift each other up:) We will both learn to be positive together:)
Thinking of you and keeping you in my prayers.
Kimberly S.
On May 16, 2010...
Hi Amanda
If you've found this site I hope it means you've read Adam's book? It is a wealth of knowledge and have re-read the recovery area again just recently. As Cheryl said, there are so many helpful, caring people here. I got my date for surgery on January 4th and had to wait until March 18th (2010). Learned so much during that time and went into my surgery well prepared. I got a new mitral valve and a tricuspid repair at the Cleveland Clinic. Ask all your questions and read some of the journals to get answers to questions you won't even think to ask!!
Fran Z
On May 15, 2010...
Hi Amanda
Glad you found this site as the people here will be supportive as well as help you with many of your questions and concerns such as what is it going to be like to deal with.
I had my mitral valve repaired in Oct/09 and am doing well. I went back to work in my home office 13 days after surgery, was driving six weeks later, managing my Christmas shopping with help carrying the packages and still attend weekly rehab classes. One thing we patients find helpful is a positive attitude and keeping busy while the doctors figure out the how and when. I'll be keeping tabs on your journals and hopefully be of some moral support as you get yourself ready. Keep positive.
Cheryl, Ontario
On May 15, 2010...
Hi Amanda,
Welcome to the site...I am fairly new on here also and I find this to be one of the most helpful sites. It has been wonderful! My surgery is in 19 days-mitral valve repair. I wish you the best in your journey and a very healthy heart in the end!
Kimberly Schlienz
On May 15, 2010...
Hi Amanda,
Welcome to the heart journals. I had mitral valve repair surgery on March 2, 2010 and did very well and am now doing cardio rehab. I also had a severe leaking mitral valve. I had my incision under the right breast, instead of the more common way. If you have any questions, please feel free to ask.
Good luck,
Theresa Callanan
Howell NJ
I found out about my mitral valve regurg while getting worked up for a knee replacement. I had a pre-op murmur which the doctor didn't seem to think important, although he had not heard one before. I was approved for surgery but when the anesthesist listened to me he was quite alarmed. There was a hurried discussion as to whether one should proceed. They did and I did fine but was scheduled for a cardiologist appointment before leaving the hospital. The workup showed a severe regurgitation. I had been symtom free except for some fatigue so it was really hard for me to face a surgery I didn't know I needed.
We have a wonderful heart hospital here in Sioux Falls but after investigating different approaches, I decided I wanted the minimally invasive approach so referred myself to Mayo Clinic in Rochester.
Minimally invasive did not however translate into minimally painful. I had a very rough 24 hours after coming out of Intensive Care.
However, after my chest tubes were pulled (and that was no picnic) I had immediate joyful relief and have been only on tylenol and advil since. I love not being zonkered on heavy drugs like I needed for my knee surgery. This is my sixth day post-op. I was discharged in three days, stayed overnight one night in Rochester then rode back home - a three and a half hour drive. Except for weakness and difficulty sleeping I am doing well.
They were able to repair my valve, which the doctors there believe to be the best choice.
I should not have to need any furthur repair.
In getting ready for surgery, Mayo Clinic sent me relaxation and stress relieving tapes and music. That helped calm me. I also went for a Reike session which was very calming. I had a prayer support group that was and is still very comforting.
When I realized the only way out was through I finally gave myself over to it and let go.
Wishing you the best,
Mary Ann Marko