Hi Rena. Your journal really touched me this morning. I am praying for you and your beautiful family. I am trying to believe what so many others have said, the anxiety is the worst part. The good news is that this procedure will allow you to spen many, many more years with your children. I look forward to reading of your recovery. Who will be updating your journal during your recovery? Jon Farmer
Hey rena I don't remember u having all these prtoblems I was young bck when they all stated though everything is going 2 b allright u have a bunch of people by urside and anels and god 2 protect you and I'm praying for u 2 cuz. This diary thing is real neat thanks for sharing it with us let me know if youy need anything so I can help love all yoyu guys we are dfamily so we gotta stck together and are family has always been caring and close together! :)
I love you, Rena. I hope the relaxation tapes work for you. I think I could use a little of that too. Less than a week to go. I know you are going to be fine. I believe the stress of all this will pass soon and that calm will come. Work helps but I'll be glad when the work is finished on Friday and maybe we can relax. Looking forward to our family dinner on Sunday. If you want to go out before then, let me know. Hugs & kisses to my baby! Love, Mom
My dear cousin Rena, first I will say thank you for allowing me to join your journey and read your Journal. I have always been amazed with your courage. You have always been a wonderful mother, anyone who has seen your children would know that with out any questions. I know you will been fine during and after you surgery because you have some many angels that are going to be in that surgery room with you, I know they will be there telling that surgeon what to do, Most important the MAIN MAN UP STAIRS will be there too. I know our family has always been close and we have all grown up and have kids and grand kids of our own but, one thing for sure we are always always there for each other so we will all be there for you and your kids and your mom and your sisters and your dad and who ever else needs us. with that I will go for now, I am sending you a great big hug, close your eyes after reading this and you will feel my arms wrapped around you and me saying my sweet cousin I LOVE YOU ! ! ! !
Rena...perusing HVJ...can't seem to get myself weened from it. I can share, add perhaps. Pete the wise athiest said it well, "The odds are heavily in your favor...". The docs and the teams that do liteally hundreds of these repairs a year have got it down to a pretty reliable science, kinda like it is routine, although a serious thing and treated as serious, non-the-less, they do so many they have practice and insight to deal with unique things that happen that is superb. And, from what I've read, repair is a much more reliable resolution of the mitral valve issue than replacement. The docs and team at Cleveland Clinic, where I flew to from the Albuquerque area for my repair have made it possible for, in my case, for me to be able today, for example, to be frustrated with myself because during this mornings 7 mile long run as part of my Marathon training program, to be frustrated because of the number of walk breaks I took, frustrated not running the entire distance without any walking. I know, intellectually, I am so fortunate to be able to do what I am doing...just a sample of events following the March 11th surgery would be walking a Half Marathon distance about 3 or 4 weeks post surgery followed a few days later by a 50 mile bike ride...April 17th completing a Sprint Triathlon, May 1st running (no walking) the 5 K Albuquerque Run for the Zoo with 35:37 beating my first post surgery 5 K goal time of 40:00 min...and now participating in a Marathon training program to do a Half Marathon with my four daughters on Sept 18th and the Marine Corps Marathon on Oct 30th. I am 4 wks into my cardiac rehab program and last Wed did run walk intervals for 30 min on the treadmill again, harder than the last time. I sweat like hell, but there's been no heart problems, and since I haven't experienced vomit, I know there's more in there that psycologically I'm not getting out...so...what I'm saying...is heart valve repair is a good thing...the repair itself is a pain in the ..., but it is only a temporary pain....and what is on the other side is gonna be, at least part of it in your case, all that wonderful time with those beautiful children you have and your family and friends. My favorite quote from Lance Armstrong..has helped me on a few occasions...is "...pain is temporary, quitting is forever...". The whole time from when I was diagnosed until I was put on the operating table, the whole time I knew sometime the "shoe was gonna drop" and I was gonna lose it. I just wondered when and how bad it would be. There were a few, like two or three, times at night when I layed on my side away from my wife and I thought about my daughters, that wonderful boy I kind of adopted, and dear friends, how they might worry about me...my strong feelings for all of them resulted in some wet eyes and cheeks for a short time when thinking about such as this. Those four daughters, when I got the wild idea to make a Marathon my rehab goal..and then one day thought it would really be something if the girls would/could do it with me..and, wow, when I told them I had the thought, they all were quicly on board to train and do it with me....that's the kind of love that emotionally triggered those an occasional wet eye rush when I layed in bed thinking about the whole thing before surgery...but, when the time came to get on the table in OR...there I was...and I was there with complete calm and confidence I was gonna wake up on the other side, so to speak, and it was all OK. Gosh, what I had waiting on the other side was so super...and I just knew I would be there to do it all. A couple years ago I had to write a paper for my university yoga class (yep, I retired and became a student to get another graduate degree, and btw, going to school with the "20 year olds", as I call it, is a super experience)...anyway, the subject/yoga term I had to write about was Santosha, and as I prepared the paper I realized I had this thing, Santosha, which is about contentment. How I got it is a miracle, I suppose, but I got it. When I learned I was gonna need and have the surgery...thought...well, thought to myself, this is gonna be the real test if you have santosha. Yep, had it. Some of the contentment, calm, and confidence going into the OR came from reading Adam's book, and, another I got just in time to read on my flight to Cleveland written by a lady named Ellen Charnley. I recommend it. Ellen describes the whole process in really good detail, procedure, emontions, and all. Ellen had her atrial septum rebuilt in Mar 2010 by the same doc that did my surgery. Eight months after her surgery she completed an Ironman Triathlon, Ironman Arizona....this is a 2.4 mile swim, followed by a 112 mile road bike ride, and followed by a full Marathon run, 26.2 miles. Now, she's an inspiration to me. For me to hopefully complete a Marathon about 7 and a half months after valve repair, with probably a lot of walk breaks during the last 6 miles or so, is nothing....but, again..what I'm saying is knowing, for instance, how super Ellen recovered, helped give me confidence about the surgery and the outcome....and, just one more thing from the somewhat disorganized, vebose old(er) man is....Nike has this song that starts out "...its not how you start, its how you finish...", and in that song there is a tune phase...you know how a tune can get stuck in your brain sometimes...well, there's this tune phrase that was stuck in my brain when I woke up from surgery. Basically, I vaguely remember the nurse asking me how I felt and I responded "I feel like shit"...my wife says I used more of my vocabulary...but, I think she imagined it, since she's pretty much heard it all...and after I told the nurse how I felt...that damn tune phase...in this case, positive for me..started running over and over and over in my brain...it goes "...everyone gets knocked down, how quick you gonna get-up...", and as soon as I could I was on my feet and, at first, barely putting one foot in front of the other dragging all that stuff, IV, bag, etc., with me with my wife and daughter and sister with me...and it wasn't long before my wife, mobility issues, couldn't keep up...and wasn't long before I was really walking and doing laps around the ward...and that tune phrase playing over and over and over...That super medical team made it possible for motivation to be up to be possible. You're gonna be on the other side of OR before you know it and up, and I would guess back teaching those students you love in the fall when school starts again. Best to you and best vibes to you from the mtn in New Mexico...Barry
My name is Melany and I am 38yrs old. I am one year out from two open heart surgeries for my mitral valve. The second was an unforseen side effect from medication. My valve is working great, they were able to do a repair, my last echo last week was normal! I have two small children 6 and 3 and know exactly how you feel. I am a go getter and 'can handle anything' person, my husband would vouch for that, but this took me down too. I spent several months before the surgery holding it all in and had many nights I cried myself to sleep, but with the help of my supportive family, the family I now have here and friends, and God, I was as calm the day of surgery as I have ever been. Please know that this is a very scary thing to face, but you are not alone, we are all here for you! I will continue to pray for you and your family and look forward to getting your updates.
Back in the mid-60s Mom came down with cervical cancer. Mom and Dad had recently separated; Dad had moved on and far away, indifferent;
While mom got her chemo & radiation, we stayed at out aunt’s.
At the big hospital, where everybody spoke a language I didn’t understand, I was led solemnly into a room with big white beds,
Mother was lying half awake and sobbing -too weak to talk to my sister and I.
A nurse came by whispering to the adults – then she smilingly led outside the room into the long shiny hall.
‘Ah but you are such a lovely little boy – you know your Mother is not well-not well at all.
But if you like, you could come live with me; when you come back, we’ll talk again.’
The little boy somehow understood what was being asked of him though he knew not the language.
Mother somehow survived, though weakened thereafter - oh but with a will to survive an provide for her children, despite the odds and without financial and moral support of man who fathered us and might I add, didn’t attend my own birth.
The odds are heavily in your favor Rena – your children are mostly grown up.
The last time we "spoke" was on February 23rd. Since then my recovery has continued to go well. I am now 4 months out and yes, I can truly say everything feels NORMAL once again!!
PLEASE find peace and relax, you need your energy to take care of your body before surgery. Remember many, many people have had this surgery, you have a GREAT doctor and positive thinking! Let your mind relax and your body will follow!
Enjoy the days and weeks before your surgery and look forward to a summer to recover and be ready to begin anew!!
Your are in many thoughts and prayers~Find peace TODAY!!
Hi Rena, My name is Gene and I am 54 years old. I was diagnosed with severe mitral valve prolapse and regreg back in December. I was operated on in January and the whole thing was easier than I had expected. I had minimally invasive surgery at Inova Fairfax outside of DC. My recovery was rapid and I was in the hospital for 3 days. Its been 4 months now and I am 100%. I can do anything, lift, exercise and forget that I even had open heart surgery. Yeah, its scary thinking about it but again it was not nearly as bad as I had feared! Just wanted to share good news for you! Gene PS Feel free to email me if you have any specific questions!
I just caught your HVJ this morning. It's okay to be afraid. ALL of us understand the feelings!! It's so overwhelming. But I noted your faith and reliance on God, and when this is behind you, I am confident you will have experienced what I did. God gives you the peace and grace you need when you need it (not necessarily before you need it). His grace is enough. The night before my surgery, I certainly expected to need a sleeping pill (I was already in the hospital) and that would have been fine, but I honestly didn't need it. (Not everyone's the same). We were just so filled with God's presence and peace. After my surgery, I had some very bumpy moments, but He was with us every step of the way. You are doing the right things--praying, confessing your weakness and fear, relying on others for strength and help. I echo the words of "Jesus Loves Me:" "little ones to Him belong, they are weak, but He is strong."
I have signed up for your updates and will keep you in my prayers.
I hope you are feeling better this morning. I can completely relate to your emotions. I am following you in this process. I have MVP with severe regurgitation and in the past month, my cardiologists have been pushing for me to get the valve repaired ASAP. My emotions already are out of whack. Most days I am in denail, busy, and strong, but there are some days when I am terrified of the thought of what is ahead. I always thought this would come later in my life too. I was counting on that. I have three children and can't even bring myself to tell them what is going on. I can't wait for all of this to be behind us. I know it will be soon. It will be behind you in no time. I also am convinced that God is with us and will guide us through it. Stay strong and keep your faith. You will be in my prayers. I can't wait to see your journal entry after the surgery when this all is in your past. Take care of yourself.
Good Morning Rena
Glad you let those of us in the HVJ community know your feelings. Many have been through what you are going through now. My surgery was last year at the Cleveland Clinic and they made a download available of relaxation/guided imagery tapes that I used right up till the time they wheeled me in the operating room. Many others have found these resources available on line or in book stores. You might want to consider using them daily. Others have also used anxiety drugs when their thoughts weren't able to be controlled. You are already using the best solution of all, prayer. I read your beautiful note in James' guestbook. Most of all, accept the support of loved ones, you can't do it alone. Keep in touch.
Rena - I share those same fears. I am 19 days away from my surgery. It is so hard to tell people what I am really feeling, especially family. I want to be positive but the fear is real. I believe the weeks leading up to the surgery are the hardest part. We must stay strong. Not just for ourselves, but for out children as well. I am praying for you and wish you a speedy recovery. Jon Farmer
Yes, the pre-op tests are a real pain in the butt, however; they are nothing more than inconveniences to get us where we need to be. This entire ordeal is certainly a marathon and one in which there is no logical preperation. I can tell you as a survivor of roboric valve repair that it will all come and go and that it will soon be behind you and then you will be writing of your experiences, giving comfort to others.
Rena, I've had a CT scan with the dye every year for the last 4. They are a breeze... Sometimes the voice on the machine is a man and sometimes a woman, I always wonder if it's the same machine or a new one. You will do fine. Take care.
Aunt MAry's right! Enjoy each day to the fullest! I know it's hard not to worry. Having trouble with that myself but I know God is watching over you and I believe you have the best medical team around. Love you. Mom
Rena, sometimes we get thrown a lil bump in our roads..in your case, perhaps a pothole...and just like your heart...with a little planning it can be repaired...all part of a master plan somewhere you can be sure...remember the time you spend worrying, could have been time enjoying..i learned awhile back to enjoy every single day...and Lord knows i do...lol...hang in there babe...we holding you tight....Love you,'
Hey Sis! I Love You So Much and I have faith that everything will be absolutely fine...you are a fighter...you fought before when your past hospitalization brought you to that point...and I never gave up hope when you were in the ICU. I know that you have chosen the right doctor for you and I am trying to work out a way to be there with you. Love ya...keeping you in my prayers.
I also have a prolapsing anterior leaflet. You are the first other person on the HVJs that I've come across with a similar issue. I will be having my surgery done April 21 at the Cleveland Clinic. I am also hoping for a repair.
Hey there my friend. Didn't know you were going through all of this, until now.
We want you to know that you are in our prayers and thoughts are with you, and your children.
We will keep up with you on your guestbook,plus FB.
Just letting you know we love you and thinking about you.
Sandy and Lonnie
I had a friend who used Dr. McCarthy and had only great things to say about his experience.
I had my aortic valve replaced 6 weeks ago at Loyola.
It sounds like you are a teacher as am I. I totally understand your feelings about the school year.
I chose to do mine during second semester because I felt my classroom was established and I had the opportunity to have a GREAT sub who could do it as good as I would. I am looking forward to going back in April, after Spring break. I plan to take March to continue my recovery and begin to feel normal again.
Check out my journal if you want......and continue to ask questions. Everyone is here to help you get through this!
The very same diagnosis. I am 8 weeks post-op and now feel fine, back to work, no restrictions. Sounds like you are on track to have this resolved.Will you be eligable for the minimally evasive repair (Davinci robot?) If yes then I highly recommend it.
Like Ricki I had my surgery at the CC with Dr. Gillinov. It was interesting that your 2 appointments are with doctors and hospitals that were not on your original list, is that due to your insurance? Next month I'll be coming up on my year anniversary. I had a tissue mitral valve (bovine) and a tricuspid repair. It was an amazing experience and the hospital and surgeon were super. I will follow your progress and am so glad you've found this group of valve "brothers". Will be happy to help you in any way I can.
I also have mitral valve prolapse (anterior leaflet, a more difficult repair). I will be having my surgery in April at the Cleveland Clinic. Dr. Marc Gillanov will be my surgeon. I did extensive research on doctors and hospitals before making this selection. I also went to the Cleveland Clinic for a cardiac consult on Feb. 18th and couldn't have been happier. If you Google U.S. News and World Reports Best Heart Hospitals in the U.S. you will see that Cleveland Clinic has been #1 for the past 16 yrs. Their mortality rates are lower than the national average for valve surgery and I think they are just what you are looking for. Best of luck to you. If this is your posterior leaflet you can be almost 98% sure that a repair can be done. Ruth Howell
Welcome to HVJ. I hope you find it as helpful as I did when I found out I needed my aortic valve replaced last year. I had my surgery at the Cleveland Clinic and I can't say enough wonderful things about the care and treatment there. I recommend you consider it as you look for a surgeon. (My surgeon was Joseph Sabik but I would have had any of the surgeons there do my surgery - they are all outstanding.)
Another surgeon you should consider is Patrick McCarthy at Northwestern - close to home for you. He used to be at the Cleveland Clinic but Northwestern "stole" him away!!
Hi Rena, Glad to see you started your Journal. I know you're worried about your suirgery, having support of friends and family will help. Hopefully we'll know more after your Dr's appointment on Monday. I'm praying for you every day. Love you. Mom