Amy's Journal

I wanted to give a heartfelt thank you and update for everyone who strongly encouraged me to head up to a better hospital for a third and fourth opinion. My family and I just returned from the Heart Hospital of Plano, which I believe is one of the top five in the US. It was really a rough journey for me because I'm so severely symptomatic, but absolutely worth it. Both surgeons responded with as close to an eye roll as possible while remaining professional when hearing what my local surgeon here had said. He had told us that, because my mitral valve is rheumatic, the mechanical valve would absolutely outlive my heart, as the rheumatic process would put me in heart failure within 20 years, but hey, 70 is a good lifespan. Both surgeons up in Plano said that was completely baseless, as I have a normal ejection fraction, clear coronary arteries, and other than chronic pain/severe migraines, am healthy, etc. In addition, they also contradicted the local surgeon I scheduled with here, and said I only had a 5% chance for needing a pacemaker. Also, they informed me I am a candidate for minimally invasive again or robotic surgery to put in a mechanical valve. Both surgeons in the Austin area told me that it absolutely, without question had to be a full sternotomy on a redo operation. They did give me the caveat that a small incision will be made so they can insert a camera to look at how much lungs scar tissue is present, and if there's too much, they will wind up needing to do a sternotomy. But at least I have the option! I've been set up with a virtual visit with one of their partners who does robotic for my fifth opinion, so that I may have all the options, then I will schedule with them. The experience was completely different, and it really felt like the patient experience was in a totally different tier. They had a very large book with their 2024 published surgical outcomes in the waiting room, and dedicated staff to take notes for the surgeons. Here in Austin, I was in a cramped room with both surgeons and nobody to take notes. The hospital here doesn't get a very good rating, And there are no published surgical outcomes that I can find anywhere. I have received so much misinformation from the two surgeons I saw down here. One told me I was too small for the on x valve, and I was shamed for being on pain medication despite having a long standing perfect record of compliance with my pain management doctor. Both Plano surgeons didn't bat an eye about this issue. Thank you all for encouraging me to make this trip! And as always, for all of your support.

Sitting in the doctor's office parking lot pretty upset. Could I get some weigh-ins about mechanical versus bio prosthetic? I've just been told by neurology that it's an acceptable risk to go with mechanical and be on Coumadin after finding microhemorrhages in my brain last year, that there won't be any increased risk of early onset Alzheimer's. Nobody knows what the microhemorrhages are from. Her best guess is it happened while I was on bypass 7 years ago for my mitral valve repair. We will do a repeat MRI before surgery just to see if there are any new ones, but the decision is now back to being mine. I should be happy that I have a choice. Thanks to your comments on a previous post, I did secure an appointment and will be traveling 4 hours to the heart Hospital of Plano for a 3rd opinion and hopefully a 4th. Both local surgeons and my cardiologist really feel like mechanical is the way to go for my age (50). They really don't like the idea of doing a bioprosthetic valve replacement every 7 years, putting my body through the trauma of OHS over and over again. 6-7 years is the estimate for my age to wear out the valve, could be a little more could be a little less. I will be giving up Taekwondo if I go mechanical (no getting punched or kicked on Coumadin), but my family is active and I try to keep up with them with other activities. My first surgery was incredibly traumatic and part of me cannot imagine doing that every 7 years, but I really am concerned about life on Coumadin. I've read all the posts people have made about what it's like. My fear is that you just don't know how your body reacts to it until it's too late and you have to be on it. I was told they'd have trouble seating an On x valve and the valve in valve idea for future replacements won't work because of my small frame size, since they can't put in a valve big enough to allow for it on the next redo. Any advice would be wonderful. I'm so overwhelmed by the choice. I thought I'd be happy that she'd sign off on Coumadin. Thank you all in advance.

Good evening, everyone. The incredible community of beautiful people on this site was such a huge source of comfort and support nearly 7 years ago when I had minimally invasive mitral valve repair. I've even met one of the most precious people in the world to me on this site. We've been long distance friends for 7 years now, having both had minimally invasive mitral valve repair within a week of each other, and only finally met for the first time this past November. We got to spend a week together at her home in beautiful Connecticut. Anyway, I'm heading to another heart cath tomorrow. I've been told that the surgeons here have not ever seen a valve quite like mine. Unfortunately, the very unusual repair done back in 2018 did not last, and because of significant scar tissue forming over the patch that was used to extend my one functional leaflet, I am now very severely stenotic and moderately regurgitant. So now it's time for a valve replacement. Apparently, I've had a very rapid onset of symptoms. Last year, I started doing Taekwondo with my husband and our 11-year-old son and fell in love with it. Having severe chronic pain, and a 4 level spinal fusion, I didn't think it was possible for me to do even a single class, let alone keep it up 3 days a week and progress through belt levels. In November, I even competed in a regional tournament... My husband and I were the oldest competitors among 500 and I won three medals! It was seriously one of the highlights of my adult life! By tournament time, I didn't know exactly what was going on with my heart, but suspected something was off when I kept getting unbelievably winded with just 1 minute of gentle exertion doing my form (still won a gold medal!). I felt very close to collapse after sparring 6 rounds (I even won a round against a black belt instructor!). I cried at my cardiology appointment a week later when he gave me the results of my stress echo, told me my valve pressure was 4x the threshold for severely stenotic after just a minute of slow walking on the treadmill, and after working so very hard, I could not safely test to advance to the next belt 2 days later. And I have some really unfortunate complications with valve choice. Because of my age (50), a mechanical valve is what the two surgeons I've seen highly recommend. But earlier last year, multiple microhemorrhages were found in my brain on a routine MRI for my severe migraines. No one can agree as to why they are there, but a neurologist told me I should avoid blood thinners if at all possible, even telling me I should stop taking baby aspirin. I am told that a bioprosthetic valve would only last 6 to 7 years (also because of my age, apparently when you're younger, you wear out that type of valve faster), which would mean multiple heart surgeries that would significantly increase risk of complications with each. An experimental option was proposed where they could seat a valve in valve every one or two surgery cycles, but because I am on the small side, surgeons would not be able to seat a large enough valve to allow for this. The surgeon I've chosen wants this surgery done ASAP, but it's not looking possible until February due to scheduling issues. As it is, I may have to wait till the end of the month to have an appointment with a neurologist to get clarification on just how risky blood thinners are for me and my brain. I wasn't looking forward to being on Coumadin anyway, but that's much more preferable to having valve replacement every 6 years. I've gone through the myriad of emotions, and am more accepting overall and less anxiety-ridden then the first go around. I have been told by both surgeons that this is going to be a very difficult surgery, that my recovery will be much harder, and my severe chronic pain will mean the surgery is much more painful. At least this time, I will not be traveling out of town for surgery. Our son is now older and hopefully the impact to our relationship will not be as significant as last time. Thank you for taking the time to read this long post! I appreciate you all so very much and really love this community!

Made it to Houston with hubby, mother-in-law, cat, and 4 yr old. But the day before we left for Houston, after 4 days of incredibly severe migraines, I got very sick. The surgeon wouldn't do surgery bc it's way too dangerous. Unsure if flu or undetermined virus but even a cold could cause pneumonia & very severe complications, a week of forced intubation & much longer ICU stay. Been in the hotel bed since consult Thursday. We were all incredibly disappointed. You all have been so supportive & now need prayers/positive thoughts please to survive the trip home. Took 5.5 hrs to get here. Hopefully it'll be a quicker trip back. My surgery has been rescheduled for March 20th. Thank you all for your support and hope everyone is faring well.

We are set to leave this morning for our 5 hour trip to Houston for my consult & surgery on Friday. I have been suffering badly with an unusually vicious 4-day long migraine that's left me mstly bedridden, unable to do much to prep for the trip. Waking up now to my whole body incredibly achey and sore. Not allowed to take any Advil or Tylenol pre-op. Is there a chance the surgeon will say no to surgery? I don't have a fever, but I really don't know what's wrong. Sometimes I feel like this before the flu or a bad virus...

Hey all! 3 days out until it's time to pack up the car with our 4 year old, my hubby & our cat to head out of town to Houston for surgery. What should I pack for the hospital? I'll be alone most of the time, as my husband will be working remotely & will also have to care for our son. Trying hrd not to be too upset about not having constant support while in ICU &hospital. I'd really appreciate any advice!

Hi All, I'm 11 days away from minimally invasive mitral valve repair (hoping it isn't replacement) by a pioneering surgeon in the field. His method is one he's pioneered & developed his own instruments for. We are travelling to Houston at great expense & difficulty because I thought this approach would lead to an easier recovery. Can any of you speak to this? Just read someone's journal who had a really rough experience, and said she wished she'd gone with a sternotomy. Really don't know what to expect. Ive had 4 spinal fusions & already suffer from significant daily chronic pain- being inactive & resting is the absolute worst thing for my body pain-wise, so I was really hopeful about a reduction in down time. I know have to have the surgery, as I am suffering daily with such bad chest pain & feel like I'm being strangled or am trapped under a wave, about to drown. Just trying to properly adjust my expectations & put my fear in check!

Hi all! I'm new to this community, and hoping there might be some of you that can lend some support , advice or reassurance. I just scheduled surgery, and I am really struggling. I've read Adam's book, which sometimes makes me even more anxiety-ridden. I'm not a newbie to surgery (4 spinal fusions)- it's all the logistics. Travelling 4 hours to Houston with my amazing, strong husband, our sweet 4 year-old son, and an elderly cat. I've already got severe chronic pain issues, and the drive alone will be incredibly rough on me. But I really worry about our son being with us. He is sweet, kind, and patient, but he is only 4. He's never been apart from us. We don't have family to leave him with, and neither of us feel comfy with just getting a stranger from something like care.com while he's in a strange city, in a strange environment, under strained circumstances. Any tips on dealing with my anxiety levels? It doesn't help that I can barely make it up the stairs without hours of chest pain & feeling like I'm being strangled. Just overwhelmed. Sorry for sounding negative. I really do love all the positive energy on this site!