Steve,
Good luck on the upcoming surgery,I will keep you in my thoughts and prayers as you have done for me. Just wanted to let you know on the valve type,if you remember this was a daily struggle for me. In the end the night before surgery we spoke to Dr Glower and went over the options again I let him know that my concern would be that if in his expert opinion when he got in there and there was no way to repair I wanted what was going to be the smartest choice to continue life. I have some pictures that show my valve was heavily calcified which. He thought could happen in a short period of time with tissue,so I now have mechanical valve. The wife and kids call me ironman. Again good luck
Alex Vigil

Hey Steve sending you best wishes. I know we talked about this before, but in terms of symptoms I have been feeling fatigued as well. Also if I drink coffee my chest tightens a little. My second opinion doc said since I'm not fatigued after major exertion , just daily fatigue, he is not convinced its heart related. Especially if I get like 9 hours or so I sleep I'm pretty good. Any thoughts?

Damian

Steve,

It was nice to see you today. We love you very much and will be by your side on Thursday.

Lots of love and prayers,
Maria, Ruben and kids

Hi Steve,
Thank you for sharing your questions with me. My email address is: wanke41@gmail.com.

Thank you,

Michelle

Hi Steve,
I have the same condition as you and will be meeting with surgeon number 1 this Thursday and surgeon number 2 next week. I was just wondering if you would mind sharing the questions with me that you asked your doctors? I would really appreciate it.

Thank you,

Michelle Wanke

Hey Steve. Sending you good thoughts. Hey, if I may ask what were your symptoms if any?

Damian

Hi Steve,
The night before surgery we stayed at a motel down the street. The day of the surgery, I stayed there as well. He was in ICCU and the PA suggested it. From there on out, I stayed in his room. There is a futon/chair that pulls out into a single size pseudo bed. They brought blankets and pillows, but I had a sleeping bag which was much more comfortable for me. I am an easy sleeper, so waking up and falling back asleep are not a problem for me. The nursing staff does try to minimize the night noise, trying not to disturb the patient much. Both of us liked being able to be there, it's always good to have an advocate along. With the meds, we found it helpful to have a second set of ears, so to speak.
Any other questions, please ask!
Good luck to you! It is true that the surgery itself seems to become a memory very quickly. It's the anticipation that is the hardest.
Best wishes,
Patty

Our prayers and our presence will be with you every step of the way!!!

Gladys and Bill

Hey Steve we are right here with you! It made such a difference just knowing that for us. All you can do is be right where you are, take each day as it comes and be blessed in the fullness of that. You are going to do fantastic. We look forward to all your good news.

Anthony & Steph

Hi Steve,
My husband had AVR done by Dr. Yun at Kaiser Sunset Dec 5th. I am guessing this is the same Dr? When we asked the cardiologist who he would recommend, he said everyone is great, but if it were a Mitral Valve issue...Dr. Yun is the guy. So you are in good hands. The nurses at the hospital were very warm and the hospital itself is fairly new. I stayed with hubby for the entire time and they were very accommodating to me. If your wife or someone is staying, have them bring a sleeping bag, much warmer than the blankets! FYI, he had a tissue valve. He is 59 and very active, which is why he choose the tissue valve.
Good luck! This site is a true blessing!
Patty

Dear Steve,

Wishing you all the best for a smooth operation and a speedy recovery. Your Uncle Chris' wife, Melissa, is also going to be having valve replacement surgery this June. She was told she would have to lose 35 pounds before the surgery, and now she is waiting to be eligible for Medicare to get it done.

Keep in touch, and I will be following your progress here.

With love and laughter,

Your Uncle Michael Tolley

Steve,

Sorry, writing into this journal from an iPad gets clumsy.

Suggestion. Write your journal in another program, like MS Word, and the paste it into your journal. It will reduce the frustration of loosing what you wrote.

Best of luck,

Joe Gimbel


Joe Gimbel

Steve,

This is a difficult time. The anxiety levels get really high. Divert yourself from your quest from time to time.

There are so many critical decisions to make. I can tell that when it comes to surgeons, like anyone else, if all you have is a hammer, everything looks like a nail.

Doctor's will steer you into the procedure that they feel the most comfortable doing. Actually, instead of finding a doctor you like it's good to find a procedure you like and then find a doctor that can do this well and that you like.

I have written a lot on this website that might be of help to you.

Steve,

This is a difficult time. The anxiety levels get really high. Divert yourself from your quest from time to time.

There are so many critical decisions to make. I can tell that when it comes to surgeons, like anyone else, if all you have is a hammer, everything looks like a nail.

Doctor's will steer you into the procedure that they feel the most comfortable doing. Actually, instead of finding a doctor you like it's good to find a procedure you like and then find a doctor that can do this well and that you like.

I have written a lot on this website that might be of help to you.

Hi Steve,
I was reading through various journals and came across yours. I have the same condition as you and am facing surgery in the next 6 weeks. I have to tell you that I am scared to death and afraid I won't wake up to see my husband and kids. I'm sure you are facing similar fears. I know I can't go on the way things are with my heart but wish I could already be on the other side recuperating with it all behind me. Good luck with your surgery and I will be praying for you on the 31st.

Michelle

Hi Steve,
Thanks for writing in my guest book. Your comments made me feel less befuddled than I have been for weeks. If I take the easy road and go with the medicine, my y valve may continue to deteriorate, and I will be one or two years older.It seems better that I take care of the problem now. I am seeing my cardiologist next week as well as my internist.
I wanted to wish you luck on the 31st. My son just went thru a valve repair and his recovery was remarkable. I hope you have the same experience. Keep journalist. I think it has been helpful

Ron Rovin

Hi Steve, good luck with the meeting and yes ask lots of questions. I did my own research so that it no longer felt like a foreign language. When looking for a surgeon it is important to get one who you trust. Write down all the questions before you meet either cardiologist or surgeon. I took seven pages of questions and would not leave until I understood - if your cardiologist or surgeon can not take the time to communicate in a way you can understand then ask for a referral. Take someone with you to act as a note keeper/ question helper as it can feel surreal.

When selecting your surgeon, you have a choice! If you don't like their track record, personality or indeed anything - ask for a referral to another. I went through 4 referrals until I found one who I was happy with. There is no substitute for experience, so the following are statistics that were important to me:

Mortality rate - very,very, very low please;
Number of operations on my valve and my type performed - the more the merrier and make sure they are relevant, My surgeon had done literally thousands!!;

Successful repairs vs replaced (if you go in with the intention of repairing how often don't you succeed?) - over 95% please.

Listen to the advice on how much physical activity to do. I was very fit and had difficulty slowing down. A strange challenge not to push things too hard!

The link below is to an amazing video iof my surgeon, hopefully visible in the USA - a little scary the first time you see it , but the expertise and control really is something to behold and admired

http://www.channel4.com/explore/surgerylive/surgical1b.html

The toughest part is the wait.

All the best,

Paul R (ex regurgitator and zipper club member - MV Repair 13 July 2012)

Hi Steve! Our family is praying for you. I know it must be scary facing this surgery, but I think it might help you if you keep your eyes on the goal of this procedure. Just keep reminding yourself of how much better you are going to feel once it is all over and you have recovered. I think that looking through to the other side really helps....that hope, along with trust in our Lord, really helps us get through the anxiety of the experience. At least, it helped me. I hope it will help you as well. We are standing with you and your family. Much love, and God's peace and blessing to you all.
Hector and Jennifer

Hi Steve,

I, too, had/have some calcification around my valves.....it is part of having valve disease. I have no idea how bad mine was/is, but my surgeon was able to repair both of my valves. However, the info I was sent from Cleveland Clinic before my surgery made it very clear that the surgery would not STOP valve disease......it would only repair the current valve damage.
Basically, they were saying my valves will continue to deteriorate. Not what you want to hear going into surgery, but it isn't something you have any control over, so there is no sense in worrying about it. If I have to have them repaired or replaced again, I will deal with it when the time comes.
Maybe they will be able to do it percutaneously by then.....hoping, wishing, wanting:)

Godspeed,
Deb Ziegler

Steve, I'm so touched at your story and what you and Aida must be going through. I wish I could come by and visit.
I could be in the same position, as I had rheumatic fever very severely at 9 years old. I have a murmur, but am OK with it.
I'll be praying for you - this is a new journey, but you are not alone. "He gives power to the faint, and to them that have no might He increases strength."
Nancy Carter

If you don't have one the rental is your best option. Each person is a bit different. I slept in one I had already for the first week or so then moved to the couch and now after 4 weeks moved to the bed comfortably. I tried my bed in the first week but my mattress is memory foam type and not that comfortable on the angle the way I was. As long as you can put your feet up during the day and have somewhere you can sleep propped up you should be good.

Brian Walsh

Steve--The secret to the recliner question is to purchase/rent an ELECTRIC POWER LIFT CHAIR. This device permits level sleeping, and more important, easy in/out without any stress on chest cavity/ upper torso. Primary marketing is to people with long term mobility problems, although I found mine on the web. Got partial insurance coverage which can't get with LZBoy, as I understand. 8 months post op and it is still my friend.

Don't forget the hot water bottle.

John Teeftt, AVR 5/4/12 Cleve Clinic.

Hi Steve,

A good, reliable recliner (with the electric button that allows its positions to change) has helped my mom a lot. She is limited in her mobility, so it's a must-have item for her. There have been moments were parts have needed to be replaced. Overall, I think having a recliner that fits comfortably and is reliable and good quality, is really valuable. A great item to have when needed.

Thanks for your posts,
Ivonne

I "reclined" a lot when I first came home from the hospital, but that's because we have two recliners in our family room and that's where I normally sit.
some people have a hard time sleeping flat in bed at first and port for the recliner instead. I didn't have that problem and was able to sleep in bed right from the start. I did buy a wedge pillow for my bed so I didn't have to lay flat,but frankly, I didn't use that for very long.

Nancy B

Your welcome to use my recliner as long as you need it bro

Steve
After my wife read Adams book she decided that I (we) would need a new recliner, sofa, and love seat. Got the new furniture on Friday1-11. Get new aorta and valve in March. Good luck and stay strong. I'll follow your progress in the upcoming weeks.
Chuck

Steve,

Most people say a recliner is required. I used one fore the first three nights. At first it was hard to work the lever on my own, but after a couple days I figured out ways to get out of it without putting the feet down.

Eric Rovin
AVR 12/11/12

Rent a recliner for a couple of months. Otherwise by the time you may need it you will be going many days in pain. There is no way to predict if you will need it or not so be safe.

Damian

Hi Steve,
I would highly recommend getting a power recliner ( you won't be able to pull the handle on a regular one). I spent most of my recovery in the recliner. It was nice and adjustable for lounging during the day, and when I would get uncomfortable in bed at night, I would go to the recliner to sleep. You will need to sleep a little upright for quite awhile after you get home, and the recliner really helps with that. If you don't want to buy one, I'm pretty sure you can rent one. My insurance covered the cost of most of mine.....I just needed a script/note from my doctor stating it was necessary. I thought I would get rid of the recliner as soon as I didn't need it anymore, but I love the thing and still sit in it every day! My husband really likes it too, and we we take turns sharing it:)

Peace be with you,
Deb Z

Praying for you, your family and your upcoming surgery, Steve. We're here for you and Aida, please let us know how we can be of help.
Diane & James

Our family has been praying for you.
This site is a great idea. Thanks for keeping us in the loop.
We will continue to pray.
Love the pictures!!
Schouts

Steve,

Congrats on setting the date!

My thoughts and prayers are with you!

Keep on tickin!
Adam Pick

P.S. Who is your surgeon?

Hi Steve,

Congrats on getting your surgery date, that is a huge milestone. I am sure you will do well and my thoughts and prayers will be with you.

Eric Rovin

Hi Steve,

Thank you for sharing the date. Brian and I were praying for you this morning and will continue to do so. Thinking of you guys daily,

Ivonne and Brian

Thanks for keeping us updated - love the photos. We are here for you all during this time and praying for the best outcome of the surgery. Love and blessings, the Frazier Family.

Steve glad to hear you recieved a good report. I too recieved a clear report today. It sound like we may be going through these procedures fairly close together. God Bless and keep positive.

Todd Breeden

Glad to hear your cath went well. I just want to give you a heads up that when the phone call arrives with your actual surgery date, it will become very real. I remember just shaking after hanging up the phone. I was pretty panicked for awhile, but eventually, I just wanted to get it over with.
Godspeed and good luck!
Deb Ziegler

Steve,
Glad to hear all went well with the Cath. I have mine scheduled for Monday with surgery to follow the next Tuesday. Nervous more than ever now, and I still have to get on the plane for a 4 hour trip from Denver to Duke NC. Good luck to you in all that comes your way.
Alex Vigil

Hey Steve,
Really it's hard to begin to anticipate what's ahead but truly this journal opens that window. You are gonna do great!

Much love and encouragement
Anthony & Steph

Hi Steven,

We're thinking of you and keeping you in our prayers. We love you and will be here to support you with whatever you need.

Amalia & David

I had a mitral valve replacement 3 weeks ago today. I wish I would have had it done a few years earlier because they were not able to stop my AF. But, hopefully it won't get any worse now. I'll be praying for you.

Hi Steve,

Thanks for posting your story and journal entries. The photos are an added plus. It's so great to see each of you. Your kids are adorable. This was the first photo of David I have seen- and he does look like Aida! By reading your entries, it feels like we can walk this journey with you. It must be so helpful to hear from others who have been through similar experiences. This is a really nice way to stay connected. Please remember that you are not alone. Every step of this journey is in God's merciful hands. Brian and I will be keeping you, Aida and your kids in prayer.

standing with you,
Brian and Ivonne

Hey Steve. Did you get a second opinion?

Damian Kudelka

Hi Steve, I just read your story. You are doing all the right things. I had AVR with an anuersym of the ascending aorta in Sept. I didnt know I was born with this until now. All the things I experienced in life I thought was something else until about 6 years ago when i was told about a murmur. My doctor sent me for an echo and it just went from there. Feel free to read my journal. I am so glad that I had the surgery as my life has changed for the better. The surgery was 5 1/2 hours long but the worse part of it was the waiting for surgery. Now that I have gone thru that time is just flying and I feel so much better, and now I realize that all of my problems in life was my heart and I didn't know it. Adam has a very good book out that will help you as well. My daughter at age 29 also had AVR with a St Jude valve and she is doing just fine also, with 3 small very active kids as well. Good luck to you.
Linda H and Elsie (my cow valve) AVR 9/19/12

Steve,

I can't imagine being told that I need heart surgery. I imagine it is scary and confusing...I would be terrified to some extent. I think it's excellent that you do research and ask people that have gone through something similar for advise/recommendations. I offer you my support and prayers. We love you and we will be by your side.

Hey Steve. I also recently was told I will need surgery. Feel free to check out my journal and we can talk through logistics, navigating the health insurance system, recovery process, etc. if you like.

damian

Hi Steve,

Looks like you read Dave Van Buren's journal.....good for you! Being informed will help with your outcome and recovery.

You asked about my recovery.......I was 57 at the time of my surgery and in pretty good shape going into it, despite my three bad valves. My only symptoms were pretty severe palpitations and some fatigue. I thought the recovery was a lot easier ( and way less painful) than I thought it would be. It was also different than I expected. I thought I would feel a little better each day, but it was more like two steps forward and then one back, especially for the first three weeks. My energy came back quickly. I would say that at three or four weeks, I was back to normal energy wise, but my sternum remained sore for a good three months. I couldn't sleep on my side until almost three months out, which kind of sucked. Everyone is different though....I read about people sleeping on their sides at three weeks out. The best thing you can do for yourself after surgery is keep moving (walk!) as much as you can. And get signed up for rehab as soon as possible. It is not painful to walk, so that is a nice feature of cardiac surgery as opposed to other types of surgery.
While my surgery went well, I am still dealing with palpitations. They aren't as severe as they were before the surgery, but they still bother me a lot. My surgeon told me before my surgery that they may not go away, and he was right. They are not dangerous, but they are very annoying.....I feel every one of them. Nothing to complain about in the big picture though. I am very grateful to be here!

You will be in my thoughts and prayers in the days and weeks ahead. It is a scary thing to go through, but you will be a stronger and better person because of it.
Stay strong,
Deb Ziegler

Hi Steve.

I'm posting my reply to the questions you posed on my guestbook here - I think this is a better place for them.

First off, I'm not a medical doctor so all my words are intended to bring up topics for discussion with your physicians. You are smart to schedule surgery with severe MV regurgitation. It won't get any better by itself, and undergoing surgery before severe symptoms develop gives you better odds. And a more rapid recovery. Since your heart is already enlarged and you are experiencing dizziness at times you are already on the clock.

MV repair is almost always possible with the right surgeon. The key to this is that the surgeon ought keep working at the repair until they run out of time and only then bail to the backup replacement, no matter how challenging the repair appears at the start of surgery. Exceptions being in cases of damage from rheumatic fever valve disease, endocarditis, and trauma - all rather rare. So if your surgeon is talking about replacement, get a second opinion. Outcomes for MV repair are superior to outcomes for replacement. Repair restores normal life expectancy while replacement does not.

There is a wide range of surgeon skill out there: some perform replacements as a matter of course, others will do whatever it takes to ensure a repair (and consequently get very good at it). You should ask your surgeon what their repair vs replace ratio is. 90% is a good answer. 95% is a better answer.

The choice of tissue vs mechanical backup valve is an "it-depends" thing. When I had my repair, I had tissue as a backup, just in case. I chose tissue for lifestyle reasons. Being on blood thinners does not fit in with my outdoorsy/sporty lifestyle. But, tissue valves are not quite as durable - they need re-replacement when they degenerate. So which risk do you think is greater: undergoing another replacement surgery or some accident related to blood thinners? Are you willing to change your lifestyle? These are the kinds of questions you need to think about when choosing a backup replacement option. Depending on you view of the future, you can also fold in your expectation for surgical advances that will reduce surgical risk by a factor of a few between not and then and also maybe introduce less invasive replacement techniques.

I can imagine the shock of learning about this at age 43! We are lucky to be living in an age where diagnostics and therapies are good enough to fix the vast majority of us.

All the best to you my man Read through my journal entries and if you have any questions let me know, I'll do my best to answer.

Keep the beat -- DVB

Steve, My son was 24 when he learned he had a severe leak. He was lucky as he received a repair. Dr. mcCarthy operated on him 2 years ago. He was in law school at the time and had the surgery over his break. In 2 weeks he was walking miles and returned to school in less than 4 weeks. He is back running a feels better than ever. Good luck. J.

Steve,

I can relate and remember the emotional significance of being told that you need heart surgery.

It can be a bit isolating, scary, confusing, etc.

Just take it step by step. If you need anything, please let me know.

FYI, I just celebrated my 7th anniversary from a double valve replacement.

Keep on tickin!

Adam Pick