susan's Journal

Margaret Fielden  I bought a Withings before surgery. It showed some periods of erratic rhythyms on ECG's but mainly OK. Since surgery it shows only that I am in permanent A Fib. Fortunately, my Withings watch broke tonight and I am enjoying not being reminded off it. I'll maybe be brave and get another measuring device later when a solution is found to the A fib. 12 weeks since mitral valve replacement and tricuspid repair and it's still there!!! I'm sure the measuring devices can be useful but at the moment my head likes being in the sand! Post op next week, so I will have to face facts. Seriously, I hope you make the right choice for you.

Robert Miller  I used to use an Apple watch and an Galaxy watch at the same time. Both are utterly bad in detecting Afib unless you use the EKG function. I still have the Galaxy watch (I use Samsung) just to measure steps, heart rate during night time, etc. Since a few months I am using the Kardia 6L. That seems to do a pretty good job but I haven't discussed it with my cardiologist yet. I never tried the Kardia Mobile but I suspect it doesn't do any better than the Apple and Galaxy watches. 

Yumiko Ishida  I hear you, Margaret. When you’re in afib, you’re in afib, and wearing a device is not helpful in the moment. I had a Kardia once, but also had a successful cardio version by then, so the afib was not constant, and every time I suspected an arrhythmia, it was over by the time I grabbed the device to check. I have an Apple Watch now, and I think you could set its sensitivity. I told it I had afib in the past, and that makes it less sensitive. My sister set our mother’s as having no history of afib, and it did send notifications out whenever it suspected afib. In my mother’s case, the notifications were set up to be sent to my sister, so as not to add to my mother’s anxiety. My sister was getting notifications in the middle of the night. I can’t remember which kind of Kardia I had, so I can’t really compare, but Robert is probably right that Kardia 6L is most accurate of all the devices you can get as a layperson.

All of that being said, if your son has afib post surgery, you will know and the doctors will know, and they will do everything they can, right there and then. Also he will be put on a blood thinner for at least a few months, regardless of the valve type, to prevent a clot. If the doctors feel the need to monitor it after he leaves the hospital, I assume they will prescribe a monitor to wear 24/7. He may never go into afib. I had afib before surgery, but not after. So, purchasing something you might never need? Maybe if you’re like me and believe in the umbrella theory - it doesn’t rain when you have an umbrella, but it pours when you leave home without one - maybe? But if it’s meant to be a just in case kind of thing, I think a pulse oximeter with a graph will be more useful. He should be checking his oxygen level regularly anyway, and the pulse graph will show any irregularities. If he develops arrhythmia after being discharged from the hospital, you should take him to ER, not wait until the doctor gets around to looking at an EKG sent remotely.

Richard Munson  I have posted before about my medtronic under skin on chest implanted linc to detect a fib. Like a dog chip, it sends data directly to the doctor and it lasts 3 years. I liked it cuz my a fib was asymptomatic. I only had one incident and received a phone call almost immediately. Easily installed by my cardiologist and no worries about taking a shower, exercise etc etc. the medtronc salesman actually observed the installation that took 5 minutes.  i began with a holter and it was really a pain to use, plus the rash was terrible. Plus, you also get a little device like a key fob you can press if something is bothering you. Insurance paid for it. An added benefit is it finds me if i escape from my pen. Lol. 

Larry Peterson  Susan, I used my Kardia Mobile the day I came home from OHS aortic valve replacement and it confirmed I was having an Afib episode.  I called the on-call surgery number, and they had me take a Metoprolol dose and the Afib went away.  Haven't had any problems since (14 months).  It was good to confirm the afib, which is what I suspected was going on.  

Grace Mason   I bought both an oximeter and Kardia mobile, before my surgery, to have on hand post surgery. I used both plus a BP monitor at home after surgery, mostly for my peace of mind(since price points were not bad). Fortunately, I never had A fib, but it was nice to check things out at home when I had those inevitable days post surgery when I didn't feel so good.

Sue Lee  Susan - I’m a OHS mom too. Watched and waited for years, making it only to age 17 before our big day with Dr El-H. We did not Kardia mobile. We had the Apple Watch but didn’t use it. Thinking of you and sending a huge hug  

Richard Munson  My prayers and good wishes for your sons upcoming surgery and recovery. You will never be considered as spying. You are his mom and you will always be no matter how old he gets. Its a special bond that exists that we dads will never have. I see it and accept it between nancy and our kids. I had it with my mother. Its a good thing.

Grace Mason   I think it would be harder as a mom to go through this experience Susan. You are definitely a part of this group of warriors, as you are a warrior in the search for the best choices for your son. Wishing you and your family all the best in your journey 💞

Adam Pick  Love this. You are in great hands Susan! My thoughts and prayers are with your son, you and your medical team. Great job finding Dr. El-Hamamsy! Happy 2025!

Rose Madura  Susan, we certainly welcome you as you advocate for your son.  God bless you on this journey!  Please keep us updated on everything! ❤️‍🩹

Adam Pick  @Rita - I could not agree more with you. When Robyn, my wife, had her brain surgery... I was a complete mess.  That said, I am starting to feel like we should maybe create a "Caregivers Checklist for Heart Valve Surgery" to help all the caregivers in our community. That might help relieve some of the anxiety, stress and confusion about the patient journey. What do you think? 

Rose Madura  Love it!  I know my Richard was a nervous wreck but did a good job of trying not to show me how scared he was.  

Kimberly Eisenhut  Yes, I agree with that idea! It would be a great addition so patients and caregivers have a list of things you will need or want ahead of time as well as maybe helpful tips for the patients and caregivers about what to expect and before and after care tips.

Richard Munson  Richards are never nervous. He was named after richard the lion HEARTED. Richard edwards are even tougher. 

Pamela Gregory  You definitely belong here Susan! You are a great Mom to do so much research and find an amazing surgeon to fix your son. We are all here to support you in any way you need

Susan Lynn  Susan - OHS is a team effort. I think it's every bit as hard on our loved ones - after all, we patients get all the good drugs! My husband and sister took it very hard, but they were my biggest cheerleaders right up to game day! You'll do the same for your son. Positive attitudes go a long way!

susan harris  Adam, glad to help with caregiver help.  I've been researching things like "don't tell them It will all be alright..."  but its hard to know what to say...things like that would be invaluable from folks!  

Rita Savelis  I take coumadin with dinner. I have it in a small pill box marked with the days of the week so I can see if I've taken the day's dose. One time I forgot and freaked out but there was no reason to. It was fine. Sometimes I take it much later than other times. Again, one is SO anxious when one starts and then one gets used to it and relaxes. There is no reason to freak out.  I'm on other meds and it's "okay" if I miss them occasionally. I feel for you because I was SO nervous my first year. Now I don't think about it. I  wrote a post about taking anticoagulants in my journal. I think I wrote it about 7 years ago. You can have a look at it in my journal.

Robert Miller  I don't have a mechanical valve but the question seems more about taking the medicine. When I am at home it's not much of an issue. I have the am/pm dispenser down in the kitchen next to the air fryer and microwave. So when I get food, I see it which reminds me to take the meds. When I travel, it's a bit more difficult. I don't usually forgot it completely but I might take it a few hours later. I am told that if you miss it by more than 6h, don't take it anymore. One solution might be to set a daily reminder/alarm on your phone or some other device.