Cheryl Printz posted a note for Jim that says:
Jim - not sure if you are still connected, but I am considering Dr. Sakwa for my mitra valve repair/replacement. Just wondering about your experience with Beaumont and Dr. Sakwa....and I live in Chesterfield too! Cheryl
Hey Jim, Happy to hear that it is over with and you didn't ge in your car and hide someplace. Welcome to the other side of the mountain. So now heres to a very speedy recovery. Good luck with that.
HI Jim, It is worth it. Everyone of us has or has had the same problem. Read some of the journals and see how well they are doing afterwards. Believe me its worth it :)
I know it is scary. Im right with you on this one but I cant wait to get it over with. Say some prayers it really does help. God will be there with you the whole way and so will all of us. Good luck to you. Keep you in my prayers tool
Jim, I understand the fear, but trust me we all have felt that fear, it does get better the closer you get to the date, a calmness comes over you and you're ready to have the procedure done, I read everyones journals and thought it was just a way of calming other valves, but it was true, the surgeons are professionals that do this everyday and we are so blessed to live in this era that we can have these procedures performed and live a productive life, the recovery is slow but if you're patient and listen to your doctor, and body, it is not bad at all, I'm getting better everyday, Ill keep in touch with youand keep you in my prayers. A hospital bed or recliner at home helps a lot, we rented a hospital bed, it made the transition home easy....Donald Lee
I woke up with the breathing tube still in, wasn't expecting that, if this happens remember to remain calm and let the machine continue to do its job, I didn't realize this so I panicked a little, but the nurses talked me through it until it was removed. I had some bruising in my throat but it healed in about two weeks it's a distant memory now, when is your surgery. Donald Lee
Jim, post surgery was unforgettable I awoke with the breathing tube, not comfortable at all, but once that was removed the staff in ICU was terrific, they attended to my every need, had some issues with my throat, they got a specialist in there within 24 hours to check me out, they really looked out for me, the step down unit was just as good I was blessed to have a staff of nurses on each shift that treated me as if I was there only patient. Much gratitude to the nursing staff at St. Mary's Hospital in Richmond, Va. They're the best....
Jim I stayed out for seven weeks, mostly because I had the time built up so I convinced my surgeon to give me six weeks and I took an additional week vacation. I probably could had went back in four weeks, but probably on half days, just let your body tell you when completed to return, cause we all heal differently, keep in touch and keep posting. Don L
Jim, Because I am dealing with back issues, ear issues (read my journal for the whole kit and caboodle) and my heart valve, my wife, my kids and friends are telling me to go on some meds for anxiety and some depression before the surgery. I have an appointment with my GP next week to discuss. Also, my wife tells me that I need to start listening to the Guided Imagery Program that is meditation tapes to help calm me down. I feel the same as you! I keep asking why me??? But I guess God has other plans...and I have to keep praying for guidance too! Keep the faith and I'll keep you in my prayers too! Charlie Messineo
Jim, I have a bicuspid aortic valve that is very leaky with stenosis....just like you and I will have a replacement on August 9th. Also had infective endocarditis which I had to take IV infusions for six weeks which is what brought on the need for surgery. Just so looking forward to feeling better with more energy. Taking naps regularly and do not breath as well in our humidity and heat in North Carolina. Charlie Messineo
Jim, I had the similar surgery on June 11th, the surgery was a success, and the healing time was tremendously reduced, you still will need to take your time and limit your lifting but the pain level was a minimum, compared to what I've been told about the sternum. Im headed back to work next week, I probably could have been back sooner but I had the time built up at work, and wanted to take my time getting back, keeep in touch, and good luck with your surgery. Don L
Jim - Just read your journal and I too will be having surgery on August 9th at the Cleveland Clinic. Where is your surgery taking place? I can relate to all your concerns, fear, anxiety, and the waiting is just so difficult. Keep the faith...Charlie Messineo
Incision on the left or right chest, sounds like what you are having. As long as the surgeon feels a proper repair/replacement can be made this is the "minimally invasive" procedure that many surgeons are trending towards (they will only perform of they think it is the best approach, otherwise they will convert to the full or mini-sternotomy).
I have a 5-6 inch incision under my right arm and a 4 inch incision around my groin for the bypass. I would say my experience was t that bad at all. See posts below, and although I had a different surgery, it appears they are using the same surgical access route.
I wouldn't say that I would look forward to doing it again, but my surgery, my surgeon, and the hospital could not have been better. Pain was minimal and very tolerable. I had mitral valve repair via a right thorocatomy, so a little different surgery. (I don't know if ou are doing thorocatomy or sternotomy)
For me as bad as I had it worked up to be in my mind, it wasn't anywhere near that bad. I found myself thinking many times, "huh, is that it???".
Not something I would want to do on a monthly basis, but the reality of the experience did not live up to the perceived fears I had going into it.
Know you HAVE to have this done, know you are doing it the RIGHT way at the RIGHT place, and get all the to-do's out of the way and you will be much calmer and ready to get this thing over and done.
I know you have more questions and the mind can play weird tricks on you. I documented some of my recovery on www.steveheart.com which might answer some of your questions, the valve section would be what you want to look at. Good luck.
Hi Jim, Well I haven't been asleep yet. lol
The only surgery I have ever had was an hysterictomy. And I asked the nurse if I was skinny yet? Then I felt stupid. So at this rate you can let me know.Ok. My daughter when she woke up still had the tube in and was doing sign language to see if her baby was ok. The nurse and I were playing charades trying to figure out what she was saying. God will take care of you. He will be there holding your hand.
For the long haul
Hi Jim, it's normal to be anxious about upcoming surgery and just taking in everything that has been thrown at you. This is a great place for support and for information/education. Learn all you can, recognize that anxiety is normal and the waiting is the hard part. Stay strong, your day will be here before you know it.
Hi Jim, My daughter had an aortic valve replaced at age 29. She was born with a murmur and it just got worse. When she had her surgery she was critical. Her doctor told me he had to stretch her valve to make it fit her St Jude valve. She had 3 kids during all of this and she got so tired, she couldn't play with her kids, like Barbies. She is fine now.
Inf fact we just saw her and she and I walked a little.She had a hill more like a mountain for her road. I went down it ok but coming back I had to keep saying I think I can. Her kids ran up the hill and back down. I told her to feel my heart beating as it was going pretty strong and hard. She said hers isn't beating like that. AS a matter of fact, while we were walking and me crawling back up the hill, her little 4 year old wanted her to carry him and she did. But watching those kids run up this hill made me more tired .So see better days are coming our way. Stay strong.
For the long haul
My aortic opening was 0.8 cm2 and I wanted to delay my surgery four months and the cadiologist said ok.
I was not having any symptoms at the time and he said to call him if I had symptoms and he could arrange surgery in two weeks if necessary. He told me to stay in my normal routine and don't do anything extreme.
Hi Jim, my doctor was pretty vague too - he said not to do anything stupid - ha! I just assumed that meant nothing strenuous like shoveling snow etc. He also told me not to gain any weight. I have the same thing as you, it is 1.2 - I guess I thought the narrowing happens slowly. Hang in there and call your doctor to get more specific info if you need it. Take care -Vicki D.
Jim, my understanding prior to AVR regarding "taking it easy" was nothing strenuous, no heavy lifting, no strenuous exercising, etc. I was told it was okay to do my normal, everyday things. This is sort of vague I know, but I never could get a more definite answer. There is a question regarding that answered in Adam's blog back several months ago, you might want to look it up. The general answer was do your normal thing, just don't increase anything and don't do heavy lifting especially if you are having symptoms.
Linda Dixon, AVR 3/13/12
Hi Jim, As you know I am just in waiting. My valve is 1.1 and it has to go down to below 1. So I am sitting on the fence just waiting to be pushed over. Meanwhile my first doctor told me to eat fresh veggies and fruit loose weight and walk 2 miles a day even in the rain. I was not allowed to join a fitness club or even walk the dog. To much stress. So I think your doctor meant avoid stress but try and enjoy life easily. I joined Weight Watchers and have lost 40 lbs. since last Oct. He said that would help with my recovery later. So I tell people I am in pre recovery lol. Hang in there you are going to be ok. No stress. :)
For the long haul
Asthma? Yes, I was told I had that, bronchitis, etc.
My mitral valve issue went undetected for how long I am not sure...
The important thing is that you now have a correct diagnosis and will get this repaired.
As far as limitations go prior to surgery if you have questions you should follow up with your doc's office.
I can tell you that my surgery date was about 2.5 wks from my ER visit/diagnosis and I went on disability right then and there. I was tired upon any real exertion and mentally scared so it was important for me to destress before this procedure.
Yup. I thought I had asthma also in April when I went to my doctor. I thought he'd just give me an inhaler and I'll be on my way (my daughter got an inhaler just a couple of weeks before). After my echocardiogram he told me I have severe regurgitation through my mitral valve. May need surgery....soon!!! I immediately left culinary school (midlife career change), stopped training for a marathon, bought Adam's book (read it in a day), and started reading all the journals in HVJ. Being all about me, me, me is a good thing. It makes you an empowered patient and a participant in your care and recovery. My terror turned to hope. Wishing you all the best!
Lee Castro (Surgery expected sometime in Aug 2012)
Hi Jim and welcome to HVJ. Its natural to be scared.Everybody has a lot of emotions. You are lucky at least you are going to get fixed, me right now is just hanging in here and waiting. I am just sitting on the fence and waiting. I would love to get this over with and be normal again. You will do fine. There is a lot of info on this site and a lot of good stuff from the Mayo Clinic and Cleveland Clinic.That will help. Read some of the other journals here that have gone already, like Linda Dixon and Mitch Friedman. Linda is my rock she has made me feel pretty good so far, but I know my day of reckoning is coming also, but I am ready. I have put my life in my faith and it has helped a lot. God will be there for me as he was for my daughter 3 years ago with a valve replacement at 29 years old. I will follow you and keep in touch. Good luck to you.
For the long haul
I was also very shocked when I found out I had a bicuspid arota. I was in the hospital for a total knee replacement when the Dr dropped the bomb on me! (big yuk)
Like everyone else here (& you) I was filled with much anxiety....cried all the time! (I look back at those days & ask myself now....why was I that upset) answer...fear of the unknown.....soooooo I started doing research...stumbled on this site...."stayed in the shadows"...reading...reading...reading..and guess what? I became very calm & accepting of my condition. These folks sure made me realize...that I can do this. I am scheduled in Cleveland for July 17th...and guess what.... I am not afraid!...I am ready.....you will be too...Just read...read...read...until you cannot read another thing...***warning***these journals are very addicting :)
I told my husband when I found out about my valve...."I am putting myself on the list"...this year is all about me!!! and it has been...and it feels good....Put yourself 1st on the list, Jim, you deserve it!!
Each one of us was in shock when we learned we needed open heart surgery. And we were all scared and full of anxiety.....that is pretty normal. When I learned I had three leaky heart valves, I had no idea there was anything wrong with my heart, so I was in disbelief that I really needed surgery. After many tests, second and third opinions and A LOT of research, I had my valves fixed at Cleveland Clinic. It wasn't nearly as bad as I was imagining, even though I had some complications. If you haven't had a second opinion, I would highly suggest you do so. Do all the research you possibly can to reduce your risks. And read Dave Van Buren's journal on risk management. It makes a lot of sense.
While it is very scary to think about, the actual surgery is not that bad. As Linda said, it is very doable! Read the journals on this site, and it will help you come to terms with it.
Godspeed and good luck!
Jim - go ahead and feel selfish for awhile. We've been there and know exactly what you are feeling. You're lucky in that you don't have to wait long. Most of us waited three months or more. And as cliche as it sounds, waiting is truly the hardest part.
What can you look forward to? I'm not particularly physically fit as I had a significant lack of stamina for close to 10 years. However 106 days out, I ran the Peachtree Road Race. The largest 10K in the world. 6.2 miles with 60,000 of my closest friends.
You will feel much better when you have a properly functioning valve. We're (including you) the lucky ones. We can be fixed.
Be involved in the process and use this site. It will take the fear of the unknown away.
Chuck Holmgreen 3/20/12 AVR
I went Mechanical -- Now I tick!!
JIm, you are not selfish! You are allowed to think this is a BIG deal...it is...although VERY doable!! I had my AVR on 3/13/12 and it was not nearly as bad as I had imagined. You will be fine and YES, you will be okay until time for surgery. We all wonder the same thing...if it's bad enough for open heart surgery....why don't you do it today???? This is really the hardest part of the process...waiting...honest it is! Read the journals...you will see. Hang in there, we at HVJ are here to support you!
Linda Dixon, AVR 3/13/12