Kathy's Journal

Just left after echo and consult with https://www.mainlinehealth.org/find-a-doctor/roberto-rodriguez at Lankenau in Philly for my father who is 90 and pretty active. Echo showed mean gradient 38 mmHG peak velocity 4 m/s LVOT .8, DI 0.2, L ventricular hypertrophy , EF 65% NYHC 1. We are trying to determine if we should consider TAVR. Worried about complications and most importantly dementia and confusion that is exacerbated when he is out of his routine. He has no real limitations right now but has some lower extremity swelling and does sleep a lot but he can function fairly independently in Personal Care facility. We are considering having the pre- op CAT scan to see if he is a candidate so we will know it is even an option. Anyone have experience w TAVR for elderly w some confusion/ mild dementia?

Good morning heart community. Y’all helped me through robotic MV repair in 2017 and I am so thankful for this community! I am doing great- my question is on behalf of my 90 year old father. He has aortic stenosis and they have been watching it for the past 5 years and now the cardiologist is referring him to valve specialist- does anyone know about aortic valve specialists is Philly area? I don’t know many details yet but will be contacting the cardiologist today. He is in a personal care facility with my mom. He has high blood pressure and some dementia but can still play pool and beat most of his opponents!

Yay! 2 year check up post MV Repair- Mitral valve is working well and my aorta is holding at 4.0 for the past 2 years! It is SO great to get GOOD news! Next CAT Scan in 2 years!!!

This is another example why I believe strongly that our surgeons are so incredible! I had my consult for a dilated ascending aorta that according to the MRI readings over the past 12 mos was growing. Dr Harrington looked at the images and evaluated her own readings and felt confident that the readings were too high. She said the angle of the images on the MRI makes the diameter reading too high. I love my cardiologist and she is thorough but I am so glad I saw the aortic valve specialist Dr Harrington. She feels the aorta’s dilation has not progressed in a year and that annual CT scans are all that is needed! Praise the Lord and I was astounded to hear that my aorta might not ever dilate to the point of needing more surgery! My surgeon for my MV Repair helped me avoid some unnecessary testing and my new surgeon following me for the aorta just saved me anguish and worry for another 12 mos at least! Thank you everyone for your support!!!

Well I have my first appointment with the surgeon to discuss my dilated aorta. I have a general list of questions from my mitral valve surgery in Feb 2017 but what questions do I need to include re aorta aneurysm? One thing I will ask is if my aortic valve is impacted since the dilation is in the ascending aorta. I was told that surgery will be indicated if the aneurysm grows by 5 mm in 6 mos. so far it grew by 2 mm over the past 6 mos so I figured I better start consulting w surgeon now to be followed closely. I had my MV Repair robotically with Dr Robert Smith who is an expert in robotic MV Repair but other surgeons in the group specialize in the aorta so I am starting with Dr Harrington. Any advice on questions will be very much appreciated!

Well, I had my one year check up with the cardiovascular surgeon and the Echo looked great and the Mitral Value is functioning very well. Feeling very thankful for that. However, my aorta is continuing to dilate- was at 4.1 in September and is now at 4.3. Not quite the news I wanted to hear. I am going to start my consultations with the surgeons to get more information and to be followed closely. Any insight into how things tend to progress with an enlarged aorta? I will see Dr. Harrington next month and start my rounds of brand new questions! I am also curious about how likely it is that I will also need an aortic valve replacement. The dilation is in the ascending aorta, but I need to know where it is!

Exactly one year ago I was heading to The Heart Hospital Baylor Plano for robotic MV Repait. Thankful for Dr Robert Smith and the specialists, my family and friends and this community who helped me move from shock and fear to becoming an educated and empowered OHS veteran. Over the past 365 days I’ve been able to return to running and have climbed a 14’er. Feeling very thankful for everyone who helped me through my heart journey!

Any experiences with "electrical heart block"? My friend's husband had his surgery Monday. This is what she just sent me so I thought I'd ask the experts! ...It’s been a challenging couple of days!! Hopeful the next couple of days will bring the changes they need to see... otherwise we are headed for a pacemaker. Everything is stable except his heart rate. It turns out he has a complete electrical heart block, and his atrium and ventricle are not communicating . Happens in about 30% of the cases. He is “external pacemaker” dependent at this time, so they have kept him In ICU monitoring it , hoping it corrects itself . If it doesn’t by this Monday , he will have to have a pacemaker placed. Sooo, it is a waiting game. We have our hands folded and our fingers crossed. Thank you for your continued prayers, concern and support! 😘❤️

My dilated aorta was discovered during the TEE scheduled during my MV Repair surgery. In Feb 2017 it was 4.0 and from my MRI 6 mos later it is 4.1. What experiences have y'all had with ascending aorta dilation? How quickly did the progression happen? Is it possible to stay put for a long time or does it progress in most cases?

Who has had an MRI of the heart recently? I am going to need close follow up every 6 months for my dilated aorta (4.0 in February) and the cardiologist doesn't want me to have the radiation with repeated CT Scans. My first MRI is Tuesday morning and I am wondering what it will be like. I am now approaching 7 months post op for robotic MV repair and am feeling great. Hoping the aorta stays at 4.0 and doesn't get worse! Thanks in advance for any experience you can offer!

Wow- it is hard to believe it has been 6 months since my robotic mitral valve repair! Time has flown by and now I basically feel back to normal. I've learned to adapt to low blood pressure and risk of dehydration during the Texas summer by hydrating, avoiding exercise outdoors and using hydration drinks such as drip drop. I am able to keep a pretty rigorous exercise regiment with Pilates 4-5 times per week and cardio which includes running and the elliptical. I've been spared any repeat episodes of heart rhythm issues. The only medication I am on is aspirin 325 mg every day besides my thyroid meds. I am so thankful for my family who have encouraged me and been by my side! I am also grateful for this community who helped me research and learn so much about my heart condition and convinced me that I could have the courage yall have shown to tackle OHS. I hope I can be of help to those of you who were in my shoes one year ago when I was shocked and in disbelief about my own heart issues. The stories of all the brave heart brothers and sisters lift me up whenever I need it. My life is so much richer with this amazing community❤️ There will be more to my story as I am monitored for a dilated aorta which was measured at 4.0 cm 6 months ago. Since I haven't been able to tolerate beta blockers due to my low blood pressure I am hoping and praying the low blood pressure is doing what the beta blockers would have done to keep things from progressing. Thank you ALL- wishing everyone peace and good health- may the skilled health care professionals and the incredible medical advances provide you all with long and healthy lives❤️❤️❤️

Finally got to see an electrophysiologist today to review my rhythm and fainting issues. Basically, there are no signs of AFib and the one episode of irregular heart rhythm seems to be a one shot deal. My low blood pressure combined w metropolol probably combined w dehydration is most likely the culprit for my fainting. Now that it is close to 100 degrees late into the evening the Dr recommended indoor running and hydrating w Drip Drop - more electrolytes and less sugar than Gatorade- and upping salt intake prior to a run. She said pickle juice is a zero calorie source of sodium! I should be on a beta blocker for my dilated aorta but can't tolerate it so hopefully mumlow blood pressure is enough to keep the aorta from getting any worse. Overall I think this is all good news- I'll take it!

Since fainting 10 days ago, I've been weaned off the metropolol and have to be careful to stay hydrated to keep my bp up but no more fainting. However, the vertigo was pretty bad- the room would spin any time I moved my head position. The cardiologist referred me to an ENT and he said I had a crystal displaced in my inner ears. He had me move my head position quickly in a few different positions and voila- the vertigo is gone. Apparently, when I hit my head while fainting, it can dislodge a crystal which caused the vertigo. I am VERY glad my cardiologist informed me that vertigo (spinning room symptoms) are an inner ear problem and not a heart problem - otherwise things would still be spinning away!

Hey heart experts- I am switching from 25 mg metropolol ER Succinate to digoxin due to severe dizziness and fainting. (I have dilated aorta so need medication for that). I read you are supposed to decrease Metropolol gradually but the ER recommended immediate switch due to severe dizziness and vertigo that just surfaced Sat. Waiting for cardiologist to call back but those who discontinued metropolol succinate- how quickly did you discontinue the medication?

Last night I got out of bed too quickly and as I was reaching to open bottom drawer I must have fainted bc I woke up on the floor after bumping the back of my head. I don't think I fell hard bc there is no bump and it wasn't very painful. However this morning I get dizzy when I am sitting up. Blood pressure is 95/65 and pulse is 75. I am 4 mos post robotic mitral valve repai and am taking metropolol. Besides hydrating any other ideas to help boost blood pressure? Been on metropolol for a month or two. Any insight would be welcome!

15 weeks post op mitral valve repair and found out my heart rhythm is in good shape after incident of racing heart rate a few weeks back. No AFib! Also, was able to run for 3.5 miles today without stopping! Enjoyed memorable weekend with family - daughter's final weeks of HS and to top it all off, got engaged to the man of my dreams this weekend! What a crazy year of ups and downs. Feeling so blessed!

Celebrating a good day! I was able to run for a mile without stopping twice today in between recovery walk for about 3 minutes. Sometimes recovery happens at a snail's pace and then sometimes a big milestone! The interval run/walk on the treadmill with an incline is starting to help my cardiovascular fitness kick in! Of course, I also took a big 2 hour nap today!

By now it seems like I had my OHS so long ago. As I read the posts of those just getting home from their OHS, it brings back memories, but they seem so far away. I am so entirely grateful for the skilled surgeon, operating team and post op nurses and for my family and friends who have been such a support over the past 10 months when I first learned that I would be facing OHS. By far, one of the most important resources and sources of support has been this community! I am thankful for everyone who shared your own journey and offered the hope and encouragement that I could do it, just like you all have done! I think we are all quite courageous folks for sure! Just to update everyone who will be facing mitral valve repair in the future, I am still working hard in cardiac rehab after a one-time episode of Afib ( cardiac nurses called it Atrial Flutter, but the cardiologists read the report and it said Afib.) I am wearing a heart monitor 24/7 just to get a baseline and make sure my heart rhythm behaves. So far, no more episodes. I am on metropolol and an adult dosage of aspirin since the Afib/Atrial Flutter incident, but I don't notice any side effects from the metropolol that I can tell. I am progressing in rehab, but very surprised at how slow the pace is for me to get back to running. I know I am 60 but before surgery I was easily able to run 3 miles. I can now run for up to 5 minutes at a time, but struggle to add distance or intensity to my workouts. I have to watch for some left shoulder/neck tightness that acts up whenever I try to increase the work outs. It feels like it is my lung capacity and breathing that is holding me back. My legs are not sore at all, but my breathing is having trouble keeping up. Back to full time work, I find that by the weekend I am pretty exhausted and needs some good quality power naps- easily 1-2 hours - to recharge my batteries. Will see the cardiologist in 2 weeks. Trying to eat as healthy as possible and focus on my health, my family and my work. Still worried about my dilated ascending aorta that measures 4.0 centimeters, but preparing myself to keep an eye on that with some regular tests that I am certain my cardiologist will be ordering. Come to find out, that was noted on my CAT scan of my heart pre-surgery, but I missed that until my post op visit with the cardiologist. I know many of you out there have experienced other complications or repeat surgeries, so if that is what is in store for me in the future, I am sure you all will help get me through another one! My goal is to continue to improve in rehab, to be able to run at least a mile without stopping and to get as well as possible for a family trip to Colorado for July 4th. I hope to get a fairly substantial hike in with the family - you never know, maybe it will be a 14'er. Wish you all the best as your either approach your surgery date or you are managing your recovery on the other side of OHS. As always, prayers and many upbeat and encouraging thoughts sent your way everybody!

Today was my first session of cardiac rehab after my rapid heart beat from last Friday. I was fortunate to get in to see my new cardiologist this morning before rehab. She did an EKG and while I am not currently in AFIB (she called my episode on Friday AFIB, but the cardiac nurses still say it was Atrial Flutter ) the EKG showed non specific T wave abnormality, I think is what she explained. I am adding Metroprolol 25 mg and will upgrade from baby aspirin to 325 mg adult aspirin EC Tablets. Eventually, I may also take amiodorone and possibly losartan but since my BP is fairly low, she wants to start me off on just the Metroprolol. I will have a monitor for 3 weeks to evaluate the extend of AFIB and get a baseline. Good news during rehab, with the same level of exertion, run/walk and eliptical, I was able to exercise without any elevation of my heart rate. I was, however, shell shocked to hear that my ascending aorta is dilated, measuring 4 cm. Each step of my heart valve journey is certainly as exciting as the last one that was just handled. Right now I am going to focus on getting back to full strength and managing my cardiac rehab and taking care of any potential AFIB I am at risk of experiencing. Looking forward to learning from and gaining inspiration from the many awesome heart brothers and sisters here on this site!

Today during cardiac rehab I had higher heart rate (150 instead of my usual 120 to 125) during exertion. I thought it was odd because I didn't increase any of the exercises. Once it was time to cool down all the nurses were examining my readings- I knew something was amiss! It took 3 hours to get my pulse down from 150 to 90 or so. My normal resting rate is anout 80-85. Anyone else experience short episode of atrial Flutter? Waiting on call back from cardiologist!