Connie's Journal

I had TAVR Monday Oct 10th,by Dr Matthew Czarny @ Johns Hopkins Hospital in Baltimore, MD . Everything went great, textbook basically I came home Tuesday afternoon Oct 11th I feel  great. I have 3 tiny incisions, the Dr. attempted to do the TAVR via my left wrist but, was unable to do so via the wrist so he had to do the TAVR via groan incisions all are healing nicely. My valve was in VERY bad shape very narrow and stenonic. This was my second aortic valve replacement in 8yrs. TAVR was amazing I almost still can't believe they were able to give me a new aortic valve with such a less invasive procedure compared to my OHS for aortic valve replacement and aortic aneurysm repair in 2014. I am supposed to start cardiac rehab soon. I am feeling much better with this new valve no more chest pains, and shortness of breath.  Thanks to all who sent well wishes, thoughts and prayers, everyone on this website is wonder and a great resource I have recommend the website to others I've met in cardiology dept. offices as well as some nurses, Dr's  and techs who were unaware of it's existence. I was so glad to find the website back in 2013 when I was diagnosed and in 2014 when I had my OHS, it is so nice to be able to hear from others or offer info. and support to others here as well. The support, help, information and resources here are invaluable! This resource is the best!!! Thank you Adam for such a wonderful resource. 

The latest update on my failing replacement aortic valve. On Monday Oct. 3rd I had a Cardiac catheterization to check for any blockages and determine if I could have TAVR procedure to replace my failing replacement aortic valve. I had good news from the test, no blockages and I can have my replacement via TAVR.  I am now scheduled for my aortic valve replacement via  TAVR procedure on Monday Oct. 10th at Johns Hopkins Hospital. 

In May 2014 @ age 53 I had an aortic aneurysm repair and a bovine aortic valve replacement. Fast forward to 2022 I just found out after my Echo on July 29th that my bovine replacement valve is now stenotic and will need to replaced as well. Would love to hear from others who have had an aortic valve replacement and then a aortic valve re-replacement. 

I've been home for a week today and made my first trip to the outside world today. Beautiful Memorial Day weekend, the weather is amazing in Baltimore today, in the 70's blue sky and full sun. Went for a nice long ride and had a cup of crab soup for lunch. Went for a walk down to the corner and back when we got home. All and all very nice day out. Feeling good, still having the usual sternum pain when I move the wrong way but other than that feeling really good. Thanks to everyone for all the well wishes and get well cards, they make my day.

9 days post surgery. Home since Saturaday evening . Doing well home nurse visit was Tuesday she said all seems well. Considering what all was done just over 7 days ago I'm amazed I'm doing as well as I am and that other than some pain I'm feeling pretty well too . My stomach is still an issue and eating is a problem but doing Ensure shakes to help supliment the lack of eating and meals. Hope I continue to progress at this rate. Physical therapist is supposed to stop by tomorrow hope that goes as well too.

They say I'm going home today. Dr. Cameron just stopped by and he's very pleased with the results of the surgery and my initial progress in healing. So that's all wonderful news!!! I know it's still a long road to go yet but just being out of the hospital and home I think will make me feel better . Looking forward to maybe sitting out on the back deck since the weather is so nice here today. Under the patio umberelia of course no sitting out in the direct sun just yet. But it's nice to be going home today !!!!

Still doing well, still talking about sending me home on Saturday! Yay!!!!! Home is always better! I was hoping to watch the Preakness horse race from my sofa at home instead of from my hospital bed so looking like we're still on track for that.

Don't have an appetite at all! Coffee here is dreadful!!! Lol, never had any this bad in my life!!! Somehow I did not get my shower this afternoon/evening :-(. so I guess I'll get that tomorrow , feeling pretty good otherwise have a bit of a whizIng going on I do have asthma and this is about what I sound like when I get a bad chest cold or respiratory thing in the winter. They are still telling me I'm doing amazing, considering just had this done Monday morning .still targeting Saturday discharge date. So that's good !!! Home is alway better. Weight the same I did at pre-op visit when I was fully dressed on May 2nd so that's good not holding fluid .

They pulled the chest tubes this morning at 6:45am . Been doing walks up and down the hall. Everyone tells me I'm doing really well so far. So basically lots more hard work to go but doing well so far. Thanks to everyone sending me well wishes for a speedy recovery. My big thrill for the afternoon I think will be getting a shower now that the chest. tubes are out. Looking forward to that, should feel good .

All went well from what I hear Monday . The Dr found another congenital issue and repair that as well. So that's good. All and all at day 3 feeling pretty good. They are supposed to remove my chest tubes this afternoon so things are progressing pretty well. Went for My first full down the hall walk.

T minus 61 hours and counting. Wow hard to believe the time is down to less than 100 hours away from surgery. The month of May seemed so far away in the midst of the frigid cold snowy weather of February when I scheduled my aortic root replacement surgery. But here it is now sunny month of May and temps in the 70's and 80's. So much still left to do but, time keeps on ticking down at what feels like an accelerated rate. As it gets down to the wire so to speak I suppose I'll have to prioritize more dividing what's left to do, into two lists one being, "I MUST do this before…" the other being "I'd like to do this before…" I suppose many on this list have had these same feelings. The feeling of time getting away from you, with it just flying from the time your surgical date was set to the time of it's arrival. I'm sure the remaining 61 hours will also feel like they just flew by as well as I am sitting in pre-op at 5:15am this Monday morning. CJ

I'm down to one week left until surgery. As of this time next week Dr. Cameron should be nearing completion of my aortic root replacement surgery. We spent Friday morning at Johns Hopkin's Hospital Out-Patient building going through all the pre-op testing,exam and consult. It took about 4 hrs. and you spend time on 4 different floors to go through the process giving you a bit of a cardio workout just getting through pre-op testing. So as long as I do not hear anything back from any of my labs, all will be a go at 5:15am Monday May the 12th. Running all my various to-do lists through my head atm trying to remember to do and take care of everything I need to get done for home and work before next Sunday. I keep going back and forth with periods of "this is coming up WAY too fast and I'm not ready" then I switch to thinking, "ok already lets just do this thing!" I'm sure by Sunday I'll be wanting to back peddle on that "let's just so this thing already!" To be honest I'm still at times struggling with the concept of being sick enough to actually require such a major level of surgery. But my cardiologist and cardiac surgeon as well as all my test say that I am in need of such a major level of surgery. So I guess I don't have much choice but to just accept it, think positive about the surgery and recovery period and let Dr. Cameron and his highly skilled surgical team do what it is they do best. And accept that like it or not, as of next Monday I will be a full fledged scar carrying member of the zipper club! The major perk of being a member of the zipper club I suppose is looking forward to the many upcoming years this surgery will give me and I'm very thankful for that.

46 days until my surgery date, and a birthday coming in 7 days. Hopefully one of MANY more birthdays to come after this OHS. I've read Adam's book, very good book btw. The book was very helpful, still nervous, still stressing but I suppose I have a bit better idea of what to expect. I've been trying to get things done around the house that I want to accomplish prior to my surgery. I would like to visit my family prior to surgery but not sure I'm going to be able to work it out. They're all about 300 miles away roughly a 5 hour drive. Not sure if I'm up to the long drive short visit then quick turn around to drive back another 5 hr. drive then go to work the next day. I'm also taking a class toward my degree in Cyber Security this semester the class ends the day before my surgery, so that puts demands on my time as well. But, it also helps keep my mind off of things I guess. As well as puts me one class closer to finishing my degree. Still at times struggling with reconciling in my head how can I need such a serious surgical procedure to fix my heart when most days I work full time,I'm taking a class and for the most part I mainly just feel really tired all the time and get short of breath when walking or doing something that requires some physical effort and some chest pains here and there. I guess in my head from what all the Dr. said needs to be fixed I guess I should feel way worse then I do most days. For the most part as of late I don't think about the up coming surgery that much. But I do notice that most mornings just as I'm trying to drag my extremely exhausted no matter how much sleep I get self out of bed, it hits me. You're going to have to have OHS. And it's coming soon, like it or not, no way around it, can't avoid it. According to the Dr. if you want to live past your mid 50's you have to do this.

I was just wondering if anyone on the list has had their surgery done at Johns Hopkins Hospital in Baltimore? That is where I am set to have mine done in May, Dr. Duke Cameron is my surgeon.

Let the games begin! I suppose that might be one way to start the countdown to my surgery date. I originally wanted to put off my surgery until the first part of October. But after seeing the contorted face my cardiologist made when I mentioned putting it off until October and seeing her shake her head and say something to the affect of,probably not a good idea. I ended up with a surgery date of Monday May the 12th, I supposed more that is more in line with the cardiac surgeons suggestion of a few months than mid February is to October. It took a few days to get the nerve up to make the call to set the date. I guess just the idea of having an actual surgical date made the entire concept of having to have open heart surgery more real,more concrete I suppose. Part of me is still trying to reconcile the idea of how can I have this much wrong with me and not feel worse than I do over all at this time. Yes I'm tired a lot, and yes I get winded when walking and doing things around the house but heart surgery, really??? At 52 don't most people feel tired after work? I guess I'm also dealing with the idea of my concept of what type of heart issue I had has been turned completely upside down. I was told when I was 24 that I had MVP and a heart murmur both were to be considered very benign and nothing to worry about. In my mid to late 30's when under the stress of caring for my elderly step-father I started having chest pains, Dr visit and an echo I was told nothing to worry about will give you a low level of a BP med and that will stop the chest pains. My primary care Dr monitored and took care of the RX for years. Meanwhile my spouse had some heart issues and ended up with a cardiologist she liked very much and started pestering me, "you should see a cardiologist you've never seen one, you're getting older etc." This went on for about 5yrs. and this in Dec 2013 I gave in and the cardiologist said I don't think you have MVP I think you have BAV. A few test confirmed this, then she said I want you to see a cardiac surgeon that appointment was in mid Feb. He confirmed her thoughts and said I should have valve replacement surgery in the next few months. So within a matter of a few months everything I'd been told and believed for almost 30 yrs. was turned completely upside down and now I'm looking at having to have this rather serious open heart surgery to replace my failing bicuspid aortic valve as well as aortic stenosis and an ascending aortic aneurysm. I guess my brain is still struggling a little bit trying to catch up with going from the concept of believing for almost 30 yrs. you have a very minor heart issue nothing to worry about, to now being told, "it's a very good thing you finally gave in and saw a cardiologist because you could have died with what you have!" And if you do not get this condition treated you would most likely die in a rather short time and oh btw the only treatment for this is to have open heart surgery.