Jean's Journal

  Doing well! 8 weeks post op today! Back to work and other than occasional light flecks and some swelling on my right chest, feeling better overall. Glad to hear you are doing so well!

Sophia Ridley  I'm three weeks post surgery, I can do certain things but exhausted afterwards. Think emotions close to the surface is perfectly natural. I have had to do injections daily, I loath injections so have been in tears nearly each night, part of it due to the injection itself but part the frustration of having AF. I am also tearful with relief and joy that I'm fixed, and will see my girls grow up. We've all been through a lot, we need to be kind to ourselves.

Billy G  It doesn't sound like you're doing too bad; you're only 2 weeks out!

I am not sure I would say I experienced shortness of breath, but I probably did a little. I definitely felt a little "off" on walks during that first week or two (or more). I definitely get tired on my longer walks.

I also always felt cold, which was different than what I expected. Before surgery, most stories I read talked about always feeling hot and sweaty. I never experienced that. If anything, I had periods of feeling cold.

I also like your description of "need[ing] Tylenol and Advil not so much for pain, but general aches . . ." That's almost exactly how I describe sometimes taking Tylenol, although those days are fewer and fewer 26 days out.

Stay positive, and don't worry about pushing too hard. I've generally felt surprisingly well and have been trying to do some work at home. But I still have days or periods where I just feel tired. Yesterday, for example, I did nothing except sit around and nap off and on. My body told me I needed it, so that is what I did.

Wanda Mroz  Give yourself time. This is big surgery and it takes time. I'm almost 4 months out now and I still get tired when I try to do too much. It will all get better.

Sophia Ridley  Hi Jean, I've just had my mitral valve repaired and had AF which is palpitations and irregular beat. Although I haven't experienced breathlessness, I have been asked if I have each time I've spoken with the medics (I've been hospitalised twice since op). Sorry if I've alarmed you but I suggest that you check this out with your surgeon.

Christine Oliva  Jean, this soreness/pain will start to go away. The first week I was a hunchback around the house. The second week I started to walk much better, pain went down significantly and I was sleeping almost the whole night. Week three is when I really started to feel like myself. I was still fairly sore, but I started my daily walks around my neighborhood which really helped me physically and mentally. I was not a hermit after all.
Now I really look forward to my walks, rehab and going out plus I'm not walking like a hunchback anymore. I'm seven weeks AVR and 80-90% better.
It will definitely get better, be patient, everyone is different, take it slow, and let your body tell you when to step it up to the next level.

God's blessings to you in your recovery and Merry Christmas!

Mary K  Hi Jean, you just went through major surgery. Please be kind to yourself. Check with your doctor about the shortness of breatg, and if he says that you are OK, then the idea is to build your strength incrementally. What they told us at Cleveland Clinic was to walk four times a day, adding on minutes as tolerated. At first I could only do a few, but as time went on over days and weeks, I added a minute at a time, keeping up the frequency. I had my durgery in the heat of the summet, so had to circle sround the house with my headphones on! Frequency seemed to be the key, it gets the blood and lymph moving in the body. At six weeks, I started Cardiac rehab, and it has been very helpful in rebuilding stamina and reassuring me about the soundness of my new heart.

Best wishes for a smooth recovery!

Gerald Schaffer  It will take some time to get back to normal walking. Like you're doing just try to do a little bit more each day and your body will be your guide. If you think its not normal call your surgeon's office for an opinion.

Jean Knappik  Thank you Mary, Gerald, Christine and Sophia, it is good to hear that from all of you. I do have to keep reminding myself I just had surgery...the surgeon put me on a very low dose of a beta blocker for my palpitations! Live you all!

Wanda Mroz  First couple of weeks are achy... Palpitations and shortness of breath are all nor,al! Your heart is healing and swollen and needs time to strengthen. This is major major surgery so give yourself time and just relax, heal and get stronger.

David Augustus  Jean, you are in great hands with Dr. Castro and company as you have selected the absolutely the best there is. I have the same surgery in May 2014 where I had my aortic valve and root replaced up through the ascending arch. Positive thoughts and knowing you have the best in the business will make this easier. I'll keep you in my positive thoughts and prayers. (you will do great). Dave

Billy G  Jean,

I recognize everyone has different feelings at different times, but when I was at the stage you're at just over a week ago, everything felt surreal.

I would never say the experience was enjoyable, but as people usually say, it is not too bad. Yes, there is some pain and there is some discomfort, but although I remember all of that, I don't really remember feeling it.

As I always say, try to focus on the positive things and the things you need to focus on for a speedy recovery. Feel free to reach out if you have any last minute questions or want someone to talk to.

Best wishes during your surgery, and I'm wishing you a speedy recovery!

Kimberly Biddick  Best wishes to you!! The best part is - it will be over soon!!! I echo what billy said - it will be rough the first few days but they truly do give you enough meds to help you through it as smoothly as possible. I was just telling my mom that they did such a good job drugging me in the hospital that I missed the bad but still experienced the good and was alert the whole time. The worst part is almost over and soon you'll be giving advice from the other side just like we are!!!!!

Jean Knappik  David, you are so right about Dr Castro and the nicest guy ever...it is so encouraging hearing someone else say this...thank you so much. Billy, you have been so supportive and I just want to thank you from the bottom of my heart...I hope I am am as strong as you were. Kimberly, thank you so much for your kind words, they are so reassuring, it gives me a lot of strength .

Liz Burroughs  Hi Jean, best wishes for a successful surgery & a full recovery! My thoughts & prayers will be with you. Take care. Liz

Doran Herritt  Jean, more prayers for peace, prayers for a skilled team to fix you up and finally prayers for a quick uneventful recovery. Take care. Drn

Rob Broley  Go get them Jean. Make us all proud. Remember the good days will out number the.bad ones.. stood luck

susan kotansky  I think the very most difficult part was waiting for surgery...heading into the unknown with a very active and unstoppable imagination. Once you're at the hospital and things start moving you will see how manageable it actually is. Before you know it, it's all over and everyone is working towards you leaving the hospital! Then recovery begins and you'll be back here writing about your successes and challenges along with the rest of us. I wish you the very best!!!!

Jean Knappik  Tommy, Liz, Doreen, rob, Susan, thanks a million...you are all such wonderful people and I feel blessed to have you cheering me on!

Wanda Mroz  Jean.... keep the faith. All will go well and you'll be on your way to healing. I'll be praying for you... Lord knows I know where you are at right now! It'll all be worth the effort. Good luck!!

Jean Knappik  Thank you Wanda...this is comforting to know you have all went through this and truly understand what I am facing...god bless every one of you...you are truly amazing.

Tina Maroon  Jean I wish you well with your surgery. It is very scary to go through. But I am sure you will do well. God Bless you!!

Natalee LaJeunesse  Thanks and same to you Jean! I am on the other side now and I came through it with flying colors....you will too.

Billy G  Jean, thanks for your thoughts and prayers! It's definitely a weird week knowing surgery is coming up so fast, but I'm excited to get through it so I can start recovery.

It sounds like you are doing what you need to do: keep positive, knowing that you'll have some ups and downs, which is okay, keep praying, and keep talking to people!

I sometimes hear how some of these surgeons are kind of dry and do not have much of a personality. I'm always joking around. My cardiologist (also a friend) also warned me about this because she knows my personality and how I am always trying to joke around to keep things positive and get through them. Another patient went to one of the most well known surgeons and told me, "He's not the type of guy you want to run up and hug, but he is very good at what he does and saved my life." I have been pleasantly surprised, however, how many surgeons have been wonderful to talk to. I have even told some surgeons upfront that I would not have them do the surgery because they are not in my insurance network, yet many of them still took 30-60+ minutes to review things and share their thoughts. It's been awesome!

Many people say that you will eventually know what the best decisions are for you. I have a slightly different perspective, at least for myself and my own situation. Instead of saying and feeling like I know I've made the best decisions, I feel like I've talked to enough people and done enough research to be extremely comfortable with the decisions I've made, even if they are not the absolute best decisions. They are definitely pretty darn good decisions for me given the things I know today.

Sorry I do not have any insight on Dr. Castro, but good luck!

Jean Knappik  Billy, Thank you so much, it truly helps to know there are people that understand what you are going through...I read all the post on everyone of us being so full of anxiety. I go from feeling fine to dread in the pit of my stomach. I am really praying hard that some of my fears loosen up. Please keep us all posted on your surgery and recovery...I am praying for you!

Kelly Weisgarber  Thank you for the well wishes Jean. Prayers being sent your way too. Good luck with the heart cath this week.

Elaine Cutri  Welcome to the group Jean. You will get some good listeners here.
I had a very good experience with Dr. Roselli in May of this year. See my story for more info. It's a little long, so you can start at the paragraph "Dr. Roselli..."

I'm off to another work appointment, but I'll keep an eye on your comments. Best wishes, Elaine

Tom Mcinerney  Hi Jean, I had Dr Johnston at the Cleveland Clinic Adam' blog interviewed him about two weeks ago . You can look it up here. Tom

Jean Knappik  So nice to meet you all and thank you so much for the feed back, this really helps...I feel like I am walking around with so much anxiety about the surgeon, hospital and how the insurances work out of state. This site is really amazing and so appreciated...you understand what I am dealing with. Thank you so much!

Billy G  I have not yet had surgery and not had much direct experience with surgeons on the east coast, but in the months I have been researching things, I have come across many people that have had great things to say about Dr. Joseph Bavaria at HUP (in addition to surgeons at the Cleveland Clinic, in NYC, etc.). Dr. Bavaria especially stood out for me because there is a chance my aortic valve is repairable, and from what I understand, he specializes in aortic valve repair.

Jean Knappik  Thanks Billy, Yes I saw good thing about him, but the only thing that sticks in my head someone mentioned to me about six years ago he was replacing a valve not sure which one...sounded to me like the Mitral valve...they were going in through the side and the next thing the whole Aorta disintegrated. I was told she was in her forties, active with small children. I do not know what took place but when I hear his name I cringe. I did go to interview a surgeon at HUP (Dr Walter Hargrove) back around the time I started seeing the cardiologist...he was very sweet, but I am not sure about his reviews. I am praying to God to direct me in the right direction and choices.

Lisa Heinen  Hi Jean and welcome! I traveled from SD to New York as there are some incredible surgeons at mount Sinai - I am just past 3 weeks post op - Ross procedure and could not have asked for better results or more skilled surgical team! Do your research and know that whatever decision you make is the right one for you.

Billy G  Jean, I can definitely see how that can make you cringe when you see his name.

I have a tri-leaflet aortic valve with no sign of disease/infection, calcification, stenosis, dilation, or anything else often seen with valve problems; one leaflet is just severely prolapsing for unknown reasons. Aortic valve repair is difficult and rare. Surgeons here in Las Vegas said they would not even attempt a repair, but that answer as not good enough for me. While searching for a surgeon that might have experience with a repair, 3 surgeons surfaced: Dr. Roselli and Dr. Svensson at Cleveland Clinic and Dr. Bavaria. I am waiting for an opinion from Dr. Svensson (expected early next week), but I currently have surgery scheduled with Dr. Trento at Cedars-Sinai. My cardiologist/friend trained under him and highly recommended him. He seems like an excellent surgeon, but unlike the other 3 I came across while researching the possibility of repair, I had trouble finding other patients or stories of him repairing aortic valves. After talking to him, I think he has a pretty good chance of doing it.

This research process has been interesting for me. Insurance-wise, I had to find a surgeon here in Las Vegas, but the best place for medical coverage here is at the airport (i.e., you leave town and go somewhere else). I thought I finally identified a surgeon in Las Vegas that started to stand out. When my cardiologist didn't recommend him, I felt lost - why does everything online and around town suggest this is the best local guy but my cardiologist keeps ignoring him when I bring him up? I finally kept probing, and she said, "He used to be my go-to local guy, but I've seen some issues with his outcomes recently. I would not be comfortable sending you to him, although I do recognize that he sometimes operates on riskier patients, which might skew his results."

I guess my point is that every surgeon probably has tragedies where things went wrong or did not go as expected. That is rare, but it is unfortunately reality. I've come across surgeons with great reputations that don't necessarily have the best outcomes. It seems like their bedside manner is so good that people still speak highly of the surgeons even when things go wrong. While sharing my story elsewhere about possible repairs, many suggested I talk to Dr. Bavaria. Your final decision is one that you need to be comfortable with, so I am not trying to persuade you to reconsider Dr. Bavaria, but I have found him to have a generally good reputation and have talked to some of his patients, so perhaps you have heard about one of his less-than-favorable outcomes, which I am sure every surgeon has. Of course, even if he is the best surgeon in the world, if you cannot get the story of an unfavorable outcome out of your head, then he's not the best surgeon for you.

As for me personally, I ultimately decided a repair was not an option in Las Vegas, so my girlfriend and I filed for domestic partnership so I could get better health insurance through her employer, thereby giving me access to the best surgeons throughout the country. Albeit expensive, I am very thankful I have this opportunity.

Enrique K  Hi Jean, Welcome to the community. Please go ahead and read my profile. I live in the east coast in Miami, FL. I got my Aortic Root and Valve repaired on Oct 9 at Mt. Sinai Hospital with Dr. Joseph Lamelas (minimal invasive procedure through the right side of my chest). I researched several other surgeons and even went to the Cleveland Clinic in Weston BUT didn't feel confident.

Jean Knappik  Thank you Lisa, Billy and Enrique...Lisa, Congratulations on your heart surgery and I wish you the best for a speedy and pleasant recovery...I was looking at Mount Sinai as well and I will look a little closer now. Billy, I will look a little closer at some of Bavaria's work, you always hear the negative stuff from people...keep me posted on who you decide to do your repair. Thank you so much Enrique, that is awesome that you are beyond your surgery and doing well and I did read your story...very nice...I read it to my husband, support is a beautiful thing.

Jean Knappik  Lisa, question??? You will never have to worry about getting your valve replaced again and how long does this surgery take?

Lisa Heinen  Hi Jean - the hopes are that I now have the best chance of not having another operation - if down the road one of the valves does become a problem - TAVR is very likely to be an option for repair. I believe some people are 20-30 years without problems already and the technique has improved over the years. I was on bypass for approx. 4 1/2 hrs - I think the surgery was around 6 hours. I also had the aortic root replaced and the ascending aortic aneurysm. I just had a re-check with my local cardiologist and heard for the first time in my life "you do not have a heart murmur"! What a feeling. I do not have words to express how highly I regard Dr. Paul Stelzer and his team at Mount Sinai - I traveled a great distance away from family - but he is the BEST at what he does and also an incredibly warm human being. I am available if you want to call and visit sometime - I spoke with many Ross Procedure patients before making my final decision. 605-350-7215 Good Luck!