Thanks Andy Dial for the swag! We are all heart warriors that go through heart valve disease treatment, monitoring, and even just researching our options. It ...Read more
Thanks Andy Dial for the swag! We are all heart warriors that go through heart valve disease treatment, monitoring, and even just researching our options. It certainly isn’t simply a physical battle; it’s perhaps even more of a mental one. I’m grateful for my heart valves and the community here and elsewhere that I’ve been able to hear from and share stories with.
Hey everyone! I like to periodically check around for articles on the Ross procedure and found this one. Dr Starnes was my surgeon and I feel very optimistic ...Read more
Hey everyone! I like to periodically check around for articles on the Ross procedure and found this one. Dr Starnes was my surgeon and I feel very optimistic about my long term outcome and am just grateful for an alternative to mechanical valves. Simply having some choices in your care is something I think we should all value. Just about at the two year mark and still have never had better echocardiograms.
CHLA has extensive expertise in the Ross procedure, which offers improved long-term survival over prosthetic aortic valves.
Darrell Malone Thanks for posting this article. I was so happy I had this option, I did have to research on my own a ... Read more
Darrell Malone Thanks for posting this article. I was so happy I had this option, I did have to research on my own and find surgeon that does it. It's almost 1 year now and all is going well. Take care all.
Michael Ponzio Thank you for sharing this article. God willing this will be an option for me on March 19. 🙏🙏 ... Read more
Michael Ponzio Thank you for sharing this article. God willing this will be an option for me on March 19. 🙏🙏🙏
I’m switching Cardiologist due to and Insurance change. I’m actually looking forward to seeing another providers approach to the monitoring of my Ross procedure. ...Read more
I’m switching Cardiologist due to and Insurance change. I’m actually looking forward to seeing another providers approach to the monitoring of my Ross procedure. My appointments often felt so brief, like they weren’t worth my time sometimes because I’d just hear what I already see in the lab reports. I decided an interventional cardiologist might be a good fit due their expertise in structural heart disease. Does anyone here see an interventional cardiologist for there regular cardiology appointments?
Yumiko Ishida I used to see an interventional cardiologist but switched. They were pushing procedures they could do ... Read more
Yumiko Ishida I used to see an interventional cardiologist but switched. They were pushing procedures they could do themselves, not what was best for me. That’s my experience.
Grace Mason I saw an interventional cardiologist for 20 yrs before my surgery. This may not apply to your situati ... Read more
Grace Mason I saw an interventional cardiologist for 20 yrs before my surgery. This may not apply to your situation, but I thought I would share as I am not sure that a interventional cardiologist is necessarily better than a cardiologist who may not be an interventional cardiologist. My 20 year plus interventional cardiologist recently became a spokesperson for the local hospital and I felt maybe his priorities had changed because in two of four of my appointments after my surgery he took personal calls during my appointments and in one of these appointments he told me my pain post surgery was "all in my head". A few weeks later I learned from a pulmonologist in the ER I had a sternal non union. I have recently moved to a different cardiologist that is not an interventional cardiologist but one recommended by a coworker. So far, my first appointment with him was no different than one with my previous interventional cardiologist. I suspect that a good cardiologist is one that is in tune with his patients no matter if he/she is an interventional or not.
Rose Madura My cardiologist is interventional. He was who I switched to when I got my second opinion. He does not ... Read more
Rose Madura My cardiologist is interventional. He was who I switched to when I got my second opinion. He does not push anything on me and is a great cardiologist.
Tiago Rocha Happy with mine for almost 20 years. He is interventional and doesn’t push for anything. Everything ... Read more
Tiago Rocha Happy with mine for almost 20 years. He is interventional and doesn’t push for anything. Everything is very clear and transparent. Regards
Rose Madura Allen, you e been doing great! It's easy to let our minds get the best of us. Please let us know how ... Read more
Rose Madura Allen, you e been doing great! It's easy to let our minds get the best of us. Please let us know how everything goes! 👍
Marie Myers I have those same worries when getting an echo!
Kimberly Eisenhut I am in wait and watch mode, but Tricuspid is so different than other valves. I completely understan... Read more
Kimberly Eisenhut I am in wait and watch mode, but Tricuspid is so different than other valves. I completely understand and live with it every single day of my life. I am learning to let it go and understand that some things are not in my control. To live every day, find some joy in even the smallest things. My worrying about things for so many years I feel has taken so much of my life away from me. You will have a great test and since you are already a "warrior", you will be just fine :)
Allen Carkner Echo report says no significant change from previous report. Basically perfect! Feeling blessed.
Just got my Sternal wires removed! All eight of them, 4 pairs. Some were sticking out more than they typically do and sometimes would irritate the surrounding ...Read more
Just got my Sternal wires removed! All eight of them, 4 pairs. Some were sticking out more than they typically do and sometimes would irritate the surrounding tissue. Also, when hugging someone or doing pushups I could feel the wires “pinch” underneath the skin against the sternum. Looking forward to seeing how my chest feels after the skin heals up. I will shared some updates. I arrived early at 5:00AM for 7:30AM procedure and was in the car for the ride home by 10:15AM
Susan Lynn Allen - Glad you had them removed - in record time, too!. The x-rays are fascinating! Thanks for ... Read more
Susan Lynn Allen - Glad you had them removed - in record time, too!. The x-rays are fascinating! Thanks for sharing.
Suzette Schear Allen glad they were removed. Sounds like you’re on your way with the hugs and push-ups. Funny how ... Read more
Suzette Schear Allen glad they were removed. Sounds like you’re on your way with the hugs and push-ups. Funny how we take some little things for granted. Congrats
Sue Maize I didn’t know it was possible to get them removed! I’m so happy for you Allen, I’m sure you’l ... Read more
Sue Maize I didn’t know it was possible to get them removed! I’m so happy for you Allen, I’m sure you’ll be much more comfortable now, after you heal. 🙏🏻❤️🩹
Deena Z That's a lot of annoyance, if you feel the wires just when hugging. I sometimes feel a "click", when ... Read more
Deena Z That's a lot of annoyance, if you feel the wires just when hugging. I sometimes feel a "click", when lifting weights. Glad it is over. I bet the healing is super fast too. Look forward to your after thoughts.
Rose Madura Congratulations Allen. I bet you are glad those annoying wires are out. Now go hug someone! 👍
Did they use a single wire to stabilize two sets of ribs? So 4 wires in total? The x-ray seems to indicate so. I just checked my x-rays and I seem to have 6 wires for the upper 6 ribs but not the lower 2 ribs.
Did you have 3 surgeries? I see these 3 short incisions. ... Read more
Did they use a single wire to stabilize two sets of ribs? So 4 wires in total? The x-ray seems to indicate so. I just checked my x-rays and I seem to have 6 wires for the upper 6 ribs but not the lower 2 ribs.
Did you have 3 surgeries? I see these 3 short incisions.
Was your scar along the chest that wide even after the initial surgery?
Allen Carkner The ribs are affixed to the sternum so they can be wrapped around a bit, they used 4 pairs of wires o ... Read more
Allen Carkner The ribs are affixed to the sternum so they can be wrapped around a bit, they used 4 pairs of wires on me to provide plenty of stability for the sternum to stay put while healing. However, the twist of the wires together was pretty large on me and stuck out a bit under the skin more than typical. This would periodically get sore and I could bang them on the ground when exercising/ doing yoga or hugging someone bony. I’ve only had one heart surgery, just had my wires removed, as a second small surgery. I have the single very large sternal incision from top to bottom. Then I also have the 3 chest tube incisions below the sternum. Now I have four more small incisions along the original sternal incision where the wires were in order to remove them. I haven’t seen them yet because they are still bandaged. Apparently young adults and children tend to have more of this widening of the scar/ incision due to higher tension and movement, even differences in growth factors.
Robert Miller @Allen Carker, thanks for the explanation.
J Alexander Lassally Best wishes. I have one which is raised and tender. Were yours that way? Curious - did they make inci ... Read more
J Alexander Lassally Best wishes. I have one which is raised and tender. Were yours that way? Curious - did they make incision and then cut the wires off??
Grace Mason That is awesome that you were able to have them removed and go home within hours!!Hope you are feelin ... Read more
Grace Mason That is awesome that you were able to have them removed and go home within hours!!Hope you are feeling back to normal soon with no more pinching.
Allen Carkner I read through the operative report and it seems they actually untwisted the wires the worked them ou ... Read more
Allen Carkner I read through the operative report and it seems they actually untwisted the wires the worked them out somehow. I still have a large bandage over the incisions so I don’t even really know how large of cuts they ended up doing. Mine were raised and very obvious to see and feel and sometimes tender to the touch. I’d had unusual pec soreness a few times we attributed potentially to the wires also. Time will tell. Relatively sore about a day and a half after the wire removal.
Allen Carkner 48 hrs after wire removal. Far less sore than the first day and back to work.
Grace Mason Wow! Looks like there won't be much additional scarring as they seem to have stayed within the origin ... Read more
Grace Mason Wow! Looks like there won't be much additional scarring as they seem to have stayed within the original 👍🏼
Robert Miller May I ask why you had 3 chest tubes? From my recollection, I only had one maybe 1/2" chest tube. Then ... Read more
Robert Miller May I ask why you had 3 chest tubes? From my recollection, I only had one maybe 1/2" chest tube. Then the wires for the pace maker. The infusion line on my neck and the line on my lower arm to take blood.
Sue Maize I had a different OHS but also 3 chest tubes.
Allen Carkner I think one goes to each lung to drain fluid and air, while one was to drain blood and fluids from ar ... Read more
Allen Carkner I think one goes to each lung to drain fluid and air, while one was to drain blood and fluids from around the heart to prevent cardiac tamponade.
Suzette Schear I had three I want to have a tattoo making it a happy face. Those scars are unfortunately darker for ... Read more
Suzette Schear I had three I want to have a tattoo making it a happy face. Those scars are unfortunately darker for me
Suzette Schear Allen your doctor did a great job your healing looks amazing for such a short time after having this ... Read more
Suzette Schear Allen your doctor did a great job your healing looks amazing for such a short time after having this done . Hopefully you don’t feel any pinching . Did you get your first comfortable hug?
Robert Miller Looking at pictures of the scars after the surgery, I think I also had 3 drainage pipes. I do recall... Read more
Robert Miller Looking at pictures of the scars after the surgery, I think I also had 3 drainage pipes. I do recall having a bunch of pipes and wires but I am embarrassed not remembering I had 3 drainage pipes. I can still feel how they removed the big pipe below the sternum, pulling out the pacemaker wires, the infusion on my neck and removing the breathing tube when I woke up after the first surgery. So I am not sure why I don't remember those other two pipes. Anyways, they were at different locations. One was below the sternum. The other two were just a couple inches below the nipples. I just checked my body and I had to look pretty carefully to still see the two scars on the side. I don't think you would see them unless you look for them. The one below the sternum can be easily seen, though. Just above the healing /red scar below the sternum, you see the scar from the first surgery. That healed scar is basically how my scar along the chest looks like, just vertical and of course a lot longer. @Suzette Schear I now feel compelled to get a smiley tattoo...
Learn about Suzette Schear, patient diagnosed with Mitral Regurgitation
Allen Carkner Hard to say for sure at this point but I’m pretty sure some of my discomfort from the wires is alre ... Read more
Allen Carkner Hard to say for sure at this point but I’m pretty sure some of my discomfort from the wires is already a bit better after having them removed.
Allen Carkner I see there Robert Miller, looks like your tubes were a bit more spread out than mine. I too had the ... Read more
Allen Carkner I see there Robert Miller, looks like your tubes were a bit more spread out than mine. I too had the pacer wire, radial arterial line for blood draws, annother IV on the arm and a central line through the neck. It sure was something being hooked up to everything. Feels like a dream now!
Deena Z Nice, clean, straight incisions. Is healing nicely. Impressed that you thought about all-the-lines ... Read more
Deena Z Nice, clean, straight incisions. Is healing nicely. Impressed that you thought about all-the-lines in you. I just was hoping I could get the bathroom without tripping.
Sue Lee Looks great. Stayed in the original scar. Well done pursuing this as you’ve mentioned a number of t ... Read more
Sue Lee Looks great. Stayed in the original scar. Well done pursuing this as you’ve mentioned a number of times it was bothering you .
Deb Fisher Thank you for sharing this. I am having my sternal wires removed on Tuesday March 11. I am experienci ... Read more
Deb Fisher Thank you for sharing this. I am having my sternal wires removed on Tuesday March 11. I am experiencing all the same issues as you did.
Is anyone familiar with sternal wire removal. My sternum has been a bit sore recently and I’m going to have an X-ray to check on the wires. Surgeon’s PA ...Read more
Is anyone familiar with sternal wire removal. My sternum has been a bit sore recently and I’m going to have an X-ray to check on the wires. Surgeon’s PA says they may be able to remove them in an outpatient procedure.
Robert Miller I have heard of people removing the wires after the procedure. It's rare, I believe. Check out the le ... Read more
I was able to complete my half-marathon trail run today with my brothers and uncle today! 366 days post Ross procedure at Keck medicine of USC. My heart felt ...Read more
I was able to complete my half-marathon trail run today with my brothers and uncle today! 366 days post Ross procedure at Keck medicine of USC. My heart felt strong while the rest of my body is feeling a bit exhausted. A bit of a sore/injured knee but grateful I was able to get it done. The event was the Old West Trail Run just outside Julian California.
Allen Carkner Thank you everyone! It has been a lot of little consistent work to get this done. I wouldn’t have d ... Read more
Allen Carkner Thank you everyone! It has been a lot of little consistent work to get this done. I wouldn’t have done it if it hadn’t been for my two brothers encouraging me along the way. They ran with me the whole time despite being able to finish much faster than me.
Sue Maize Awww, that’s a win right there!! And is that a tattoo of a RP on your leg perchance? 😊
Allen Carkner It sure is! It’s an approximation of how my surgeon typically performs his Ross procedures integrat ... Read more
Allen Carkner It sure is! It’s an approximation of how my surgeon typically performs his Ross procedures integrated with an old textbook heart diagram.
Sue Maize Looks amazing!! I’d love to get a tatt to commemorate my OHS somehow, maybe not a whole Ross proced ... Read more
Sue Maize Looks amazing!! I’d love to get a tatt to commemorate my OHS somehow, maybe not a whole Ross procedure, but it’s great that we can! Did you clear it first with your cardiologist?
Leslie Prebyl Allen- Congratulations on the run. My son Drake and I traveled to Mount Sinai in NYC in September of 2022 so he could have the Ross Procedure done. Dr. El-Hamamsy was his surgeon. He was 22 at the time and had just graduated from college and started his career. He too had an aortic stenosis/bicuspid valve, but never had any symptoms or restrictions placed upon him growing up. He did have angioplasty at 14 which bought him some time. He is an active bicyclist and was back up and riding 8 weeks after the surgery. Since he is so active and young, that is why we chose the Ross. I didn't want him to have to deal with blood thinners and all that comes with that. Thankfully, he hasn't had any issues since the surgery. Every so often he will have pain up his back and shoulders and find it painful to take deep breaths. The doctor has no idea why. He takes Advil and uses the heating pad and it goes away. Very strange. He is still on BP medicine because his cardiologist thinks it is protective for the aortic arch. We are trying to set up a meeting with the surgeon for his opinion. I suspect in June when Drake has his next echo and EKG, he will elect to go off of the medication and see what happens over the next 6 months. I admittedly haven't been on the website much since Drake's surgery, so I wasn't aware of your story until I saw it highlighted in the newsletter. I am so glad things are going well for you. Out of curiosity, do your brothers have a bicuspid valve issue? My other son who is 20 has it, but it is very mild. It is only detectable on the echo. He might be lucky and never need any intervention as he gets older. I need to show Drake the picture of your tattoo. It is amazing! Take care--- Leslie Prebyl
Leslie Prebyl Allen- Congratulations on the run. My son Drake and I traveled to Mount Sinai in NYC in September of 2022 so he could have the Ross Procedure done. Dr. El-Hamamsy was his surgeon. He was 22 at the time and had just graduated from college and started his career. He too had an aortic stenosis/bicuspid valve, but never had any symptoms or restrictions placed upon him growing up. He did have angioplasty at 14 which bought him some time. He is an active bicyclist and was back up and riding 8 weeks after the surgery. Since he is so active and young, that is why we chose the Ross. I didn't want him to have to deal with blood thinners and all that comes with that. Thankfully, he hasn't had any issues since the surgery. Every so often he will have pain up his back and shoulders and find it painful to take deep breaths. The doctor has no idea why. He takes Advil and uses the heating pad and it goes away. Very strange. He is still on BP medicine because his cardiologist thinks it is protective for the aortic arch. We are trying to set up a meeting with the surgeon for his opinion. I suspect in June when Drake has his next echo and EKG, he will elect to go off of the medication and see what happens over the next 6 months. I admittedly haven't been on the website much since Drake's surgery, so I wasn't aware of your story until I saw it highlighted in the newsletter. I am so glad things are going well for you. Out of curiosity, do your brothers have a bicuspid valve issue? My other son who is 20 has it, but it is very mild. It is only detectable on the echo. He might be lucky and never need any intervention as he gets older. I need to show Drake the picture of your tattoo. It is amazing! Take care--- Leslie Prebyl
Sue Lee Congratulations on a great run and a fantastic recovery!!
Today marks one year post Ross procedure surgery! I am so thankful for my surgeon, USC Keck Hospital, and you all who have been there to answer questions and ...Read more
Today marks one year post Ross procedure surgery! I am so thankful for my surgeon, USC Keck Hospital, and you all who have been there to answer questions and provide support when needed. I am grateful for my surgery but also find myself have a bit of anxiety looking back on it. It seems so long ago but also just like it was yesterday. I’m very in tune with my heart and feel when it might “skip” a beat once in a while or a certain stretch might cause a little tug around my sternal scar. My very bumpy sternum will always be a reminder of my heart that must be kept an eye on. Thanks everyone for listening!
Grace Mason Congratulations Allen! Big milestone! I enjoy reading your posts on your journey.
Darrell Malone Nice post Allen. Many more milestones ahead
Klara Čičić Dear Allen, I am glad you are feeling ok. I can resonate with your feeling of being in tune with your ... Read more
Klara Čičić Dear Allen, I am glad you are feeling ok. I can resonate with your feeling of being in tune with your heart and feeling each beat as I do, too... It can sometimes be frustrating or a bit annoying... scar is also a daily reminder. But it should all be a remind of how strong and resilient we are :)
Rose Madura Congratulations Allen! You are one of our stars!!!🪖❤️🩹
Deena Z Congratulations. Great feeling!! You had more courage than you ever imagined, I bet. Me too:) ... Read more
Deena Z Congratulations. Great feeling!! You had more courage than you ever imagined, I bet. Me too:)
J Alexander Lassally Yes, well stated. I feel like we are all scarred from the cardiac surgery event - and also gifted fro ... Read more
J Alexander Lassally Yes, well stated. I feel like we are all scarred from the cardiac surgery event - and also gifted from the personal strength we gained. It is a messy / imperfect process. Sometimes, I look at the pictures of myself on day 0, 1, 3, 5 etc and just stare and reflect. Thanks for sharing.
Andrew Dial Congrats my friend :) your scar is a reminder of how strong you are and how much you can endure. Wear ... Read more
Andrew Dial Congrats my friend :) your scar is a reminder of how strong you are and how much you can endure. Wear it with pride
Those with Ross procedures, does your cardiologist keep you on 81mg aspirin for life? I’m also on relatively strict blood pressure regimen trying to always ...Read more
Those with Ross procedures, does your cardiologist keep you on 81mg aspirin for life? I’m also on relatively strict blood pressure regimen trying to always stay under 120/80.
Grace Mason I was told to take 81mg aspirin for 6 months by my surgeon, not sure what cardiologist would recommen ... Read more
Grace Mason I was told to take 81mg aspirin for 6 months by my surgeon, not sure what cardiologist would recommend. Surgeon said for 1 year keep SBP around 110 at rest, while exercising 130-140 HR and SBP 140-150
Andrew Dial My cardiologist recommends me staying on the 81mg. Not required, but recommended.
Timothy Andre My cardiologist and surgeon had very different answers. I chose the one that fit my wishes. I stopped ... Read more
Timothy Andre My cardiologist and surgeon had very different answers. I chose the one that fit my wishes. I stopped taking them around 3 months post-op.
David Rasmusson My cardiologist has encouraged me to keep taking 81mg aspirin daily since getting 2 stents 5 years ag ... Read more
David Rasmusson My cardiologist has encouraged me to keep taking 81mg aspirin daily since getting 2 stents 5 years ago, and to continue with them since my mitral valve replacement 3 months ago.
Hello everyone, I don’t want anyone to feel pressured, but I’ve decided to set up a Children’s Hospital of Los Angeles Heart Institute fundraiser ...Read more
Hello everyone, I don’t want anyone to feel pressured, but I’ve decided to set up a Children’s Hospital of Los Angeles Heart Institute fundraiser to celebrate my one year surgery anniversary and me running my first half-marathon. I am running a half-marathon with my two brothers one year one day post op. CHLA is a special place to me as they provided the second opinion cardiology consult that connected me to my surgeon Vaughn Starnes who works at both Keck medicine of USC and CHLA. Below is a link to my fundraiser. https://secure1.chla.org/site/TR/DIY/DIY_Fundraising?px=3066134&pg=personal&fr_id=1360
Allen Carkner I would like to raise awareness of congenital heart disease in both adult and children. I also want t ... Read more
Allen Carkner I would like to raise awareness of congenital heart disease in both adult and children. I also want to show that you can come back from surgical heart valve replacement and have active healthy lives. I’m grateful for this community!
Has anyone run into the problem of CVS pharmacy being out of their prescription? I might have to drive more than thirty minutes both ways to get my labetalol ...Read more
Has anyone run into the problem of CVS pharmacy being out of their prescription? I might have to drive more than thirty minutes both ways to get my labetalol 200mg prescription from a cvs that has it in stock. All my local CVS locations are out and so is their supplier. My insurance doesn’t have as good of coverage outside of CVS.
Barbara deLoache Have you checked with your MD to see if they have samples?
Rose Madura I had a similar issue with CVS when my husband was prescribed Eliquis when he had Afib. After 3 days ... Read more
Rose Madura I had a similar issue with CVS when my husband was prescribed Eliquis when he had Afib. After 3 days of the pharmacy saying they were waiting on it from the supplier, I drove there and saw a pile of boxes. Whether they had just arrived or were sitting there for 3 days, I don't know. This was after CVS closed one of the pharmacies and transferred all the work to this location. To say the pharmacy area was in chaos was an understatement. I told them I had all day and would wait while they went through the boxes and found the Eliquis. My pacing back and forth made them nervous, they found it quickly. I fear we will run into more issues like this for some reason.
Allen Carkner I may just have to go for a drive for my meds. My Cardiologist is 45-60 minutes away anyways.
Richard Munson Welcome to 2024 sadly. Hopefully not made in china
Kathy Ozio There is at least one company that you can get a year's supply of meds you've been taking at least 6 ... Read more
Kathy Ozio There is at least one company that you can get a year's supply of meds you've been taking at least 6 months. I had switched one of my one heart meds, so I'm waiting so I can do that. You may want to check that out. You have to pay (no insurance) but it may be worth it if you can swing it, rather than run out.
Allen Carkner Thanks Kathy, I’ll check that out. I hate having to push it to having 6 days supply left then refil ... Read more
Allen Carkner Thanks Kathy, I’ll check that out. I hate having to push it to having 6 days supply left then refilling. Gives me anxiety.
Brady Busch Does CVS ship from one store to another?
Susan Lynn Allen - I just got a text message from CVS asking me if I WILL be refilling prescription eye drops t... Read more
Susan Lynn Allen - I just got a text message from CVS asking me if I WILL be refilling prescription eye drops that I regularly use. I'm guessing they're either having trouble getting medication or they're consciously opting to maintain a smaller inventory. Some companies choose to reduce inventories to improve the appearance of their financial metrics. If your insurance allows you to get three months at a time or auto-refill, you might want to see if that helps. Good luck!
Richard Munson I use cvs caremark and they deliver to the house. When its getting low they send me a notice on line ... Read more
Richard Munson I use cvs caremark and they deliver to the house. When its getting low they send me a notice on line to reorder. If it needs a new prescription they contact my doctor. If there is a problem, you can call them. Plus its cheaper than going to the store and you can get 90 days worth. Plus there is a shortage of pharmacists because its a 6 year program you need to be smart, and kids today want everything to be easy. Sorry to say
Allen Carkner May try to get on the mail delivery Caremark program.
First running event post op! 5k post-op record 10:25/mile pace! So grateful to be able to push my body a little bit now that my heart is more efficient post ...Read more
First running event post op! 5k post-op record 10:25/mile pace! So grateful to be able to push my body a little bit now that my heart is more efficient post Ross procedure!
Sue Maize WooHoo!!! You go heart brother!! Wonderful news, and just a tad envious of that beautiful warm sunny ... Read more
Sue Maize WooHoo!!! You go heart brother!! Wonderful news, and just a tad envious of that beautiful warm sunny sky in the background! 😁
Allen Carkner Thanks everyone! Figuring out the “ideal” training/ running intensity has been one of the harder ... Read more
Allen Carkner Thanks everyone! Figuring out the “ideal” training/ running intensity has been one of the harder things to navigate my whole life, before and after valve replacement. I certainly pushed it a bit harder before surgery than some would have advised. I want to toe the line and optimize my training for longevity while also trying to not wear out my valves from too much intensity. It’s something I always have on my mind. There has got to be an ideal fitness type for those of us with valve replacement's. I want my heart to be efficient and my muscles strong but I also don’t want to expedite the wear of my donor pulmonary valve. Thoughts are welcome. Thanks everyone for the encouragement. I feel lucky to be able to do what I can do but I also fear about going to hard or not hard enough.
Sue Lee Great news and sounds very sensible and successful
John Hannon Way to go Allen, keep it up! I've asked quite a few times about overdoing it and not been told to li ... Read more
John Hannon Way to go Allen, keep it up! I've asked quite a few times about overdoing it and not been told to limit things at all. I'm not able to get my heart rate up to where the calculations say would be my max, even when I go all out. The biggest risk I was warned of is that I might hurt my shoulder from lifting - in my chest x-ray they could see my shoulder also and there is some joint wear in there I guess, probably from swimming.
I’ve been looking at the American dental association website on antibiotic prophylaxis. According to ADA, “Prophylaxis is recommended for the patients identified ...Read more
I’ve been looking at the American dental association website on antibiotic prophylaxis. According to ADA, “Prophylaxis is recommended for the patients identified in the previous section for all dental procedures that involve manipulation of gingival tissue or the periapical region of the teeth, or perforation of the oral mucosa.”. My question is, does a normal cleaning fall into this description at all? The guidelines have changed some and less antibiotics use is generally better it seems. Any thoughts? https://www.ada.org/en/resources/research/science-and-research-institute/oral-health-topics/antibiotic-prophylaxis
Susan Lynn Allen - Yes. Dental cleanings stir up more bacteria than most procedures. Better safe than sorry. ... Read more
Susan Lynn Allen - Yes. Dental cleanings stir up more bacteria than most procedures. Better safe than sorry.
Jennifer Fuller After my surgery, I was advised by my cardiologist to take prophylactic antibiotics before cleanings. ... Read more
Jennifer Fuller After my surgery, I was advised by my cardiologist to take prophylactic antibiotics before cleanings. My dentist called in the script for me. They gave me enough for two visits.
Marie Myers Yes, 2 grams of amoxicillin for me every cleaning. Don’t want to get endocarditis!
Daneen Douglas I know I used to have antibiotics for just a cleaning but they said you don’t need it unless you ha ... Read more
Daneen Douglas I know I used to have antibiotics for just a cleaning but they said you don’t need it unless you had an artificial valve. I am wary of that but have been keeping up on my dental health. I think it is better to be safe than sorry but have not been getting antibiotics before. They said they will do a final cleaning a week or so before my surgery with an antibiotic rinse that will prevent bacteria forming for the surgery for about 3 weeks.
Deena Z Yep, I was told that same as everyone above. Better safe, than sorry.
J Alexander Lassally Yes, if you have chords or annuloplasty ring (anything foreign) then especially yes.
Allen Carkner My Cardiologist told me “normal” cleanings I don’t need to but “deep”cleanings yes it’s s ... Read more
Allen Carkner My Cardiologist told me “normal” cleanings I don’t need to but “deep”cleanings yes it’s suggested.
Allen Carkner I think due to the other risks like c dif and antibiotic resistant bacteria.
c w Just read Brian Rost's story, if you are like me you will be flossing like ten times a day and this w ... Read more
c w Just read Brian Rost's story, if you are like me you will be flossing like ten times a day and this will not be a problem!!! (Brian if you read this so glad you are doing well now!)
My dentist had me ask my cardiologist how long I needed to take antibiotics, and my cardiologist said for the rest of my life. (I had bicuspid aortic valve repair.) I got the impression that he did not think 1 day of antibiotics a couple times a year for cleanings was not the same as, like, a normal 3 week course of antibiotics in terms of resistance, and said (as others have) that it was worth the risk.
Rita Savelis Before my valve replacement there was no need for me to take antibiotics prior to dental work. But af ... Read more
Rita Savelis Before my valve replacement there was no need for me to take antibiotics prior to dental work. But after double valve replacement I was told by my cardiologist and my dentist to take 2g of amoxicilline one hour before any dental procedure. I get my teeth cleaned twice a year and take an antibiotic one hour before. There is a very slight chance of bacteria going down through your gums (when you bleed) and to your heart. An infection in your new heart valves is not a good thing after heart surgery.
STEPHEN MORRIS Since my issues were caused by an infection...I take antibiotic before cleaning.
John Hannon I've tried to not have to take the antibiotics and asked multiple times. Every time I'm told to alwa ... Read more
John Hannon I've tried to not have to take the antibiotics and asked multiple times. Every time I'm told to always take it for dental procedures. I researched antibiotics and azithromycin is one that shows some longevity benefits, compared to others that seem to just kill off your microbiome along with keeping you safe for the dental work. My dentist got me azithromycin when I asked and I like it....just had a cleaning this week and did a PR swim and close to PR run the next two days after that.
Christmas gift for myself. Worked with an artist to try to closely match the wrapped Ross procedure that I had at Keck Medicine of USC in March by Dr Starnes. ...Read more
Christmas gift for myself. Worked with an artist to try to closely match the wrapped Ross procedure that I had at Keck Medicine of USC in March by Dr Starnes. I feel very grateful for my surgery and avoiding anticoagulants at this period of my life.
Rose Madura Wow, I'm not a tattoo person but it is very cool! 👍
Richard Munson And i thought my oldsmobile tattoo was unique.
Adam Pick Wow! Double Wow! Triple Wow! Did you send this Dr. Starnes? That is amazing!!!
Allen Carkner I will share with Starnes. I worked hard with my artist showing surgical images and many diagrams to ... Read more
Allen Carkner I will share with Starnes. I worked hard with my artist showing surgical images and many diagrams to get the surgery details as close as I could.
Dave Walters Very cool, I had a few more tattoos to get but now with the Warfarin it seems like those days are don ... Read more
Dave Walters Very cool, I had a few more tattoos to get but now with the Warfarin it seems like those days are done. Unless they come out with something…
Throwback to March 2023 Ross procedure at Keck medicine of USC. Dr. Vaughn Starnes seems to make heart surgery look easy I hear. I was just given permission ...Read more
Throwback to March 2023 Ross procedure at Keck medicine of USC. Dr. Vaughn Starnes seems to make heart surgery look easy I hear. I was just given permission by my cardiologist to train for a run in March 2024. Grateful for my new valves!
Deena Z Love it, Allen. Going for a run/race on your one year anniversary! Nice way to celebrate.
Sharon Behl Way to go, Allen! A good reminder to set goals and to keep them really individual. For me, today, le... Read more
Sharon Behl Way to go, Allen! A good reminder to set goals and to keep them really individual. For me, today, less than one day post hospital discharge, I will take my meds, finish my coffee, take a shower, get dressed and enjoy take-out lunch with visiting family. Maybe a game of Scrabble. I wanted to go to Rockefeller Center to see the tree, but have to listen to today's message from my body, "no long car rides, no crowds, no stress." Ugh...patience is a virtue, though...right?
Deena Z Sharon, I love how well you think through your days to make them as enjoyable as possible. WTG.
Allen Carkner I totally agree Sharon. I certainly will be taking my training slow and steady.
I'm thankful this year for the Ross procedure at Keck USC hospital and a new non-leaky non-narrowed aortic valve that just might last my lifetime! And I'm thankful ...Read more
I'm thankful this year for the Ross procedure at Keck USC hospital and a new non-leaky non-narrowed aortic valve that just might last my lifetime! And I'm thankful for the donor that provided the pulmonary valve that made it possible. I am thankful for this site and for Adam for making it such a great resource for us that find out they'll be needing surgery. Thank you everyone here for your words and thoughts when they're needed. I Just had a cardiology visit 9 months post-op and my valves look great and sound like they are supposed to. She said they anticipate my aortic valve lasting my lifetime maybe and the pulmonary valve lasting a long time. 20-30 plus years. May not need open heart again. Likely catheter based valve procedure when needed.
Those that have had a full sternotomy. How do push-ups feel for you or chest exercise in general? I did a light chest workout Monday and there's just some slight ...Read more
Those that have had a full sternotomy. How do push-ups feel for you or chest exercise in general? I did a light chest workout Monday and there's just some slight aching of my sternum that feels unusual. Compared to pre-surgery. I'm 7 months post-op and pretty much have no restrictions.
George Gardopee Allen - I re-started light weight training after I was cleared to resume normal activity. Chest exerc ... Read more
George Gardopee Allen - I re-started light weight training after I was cleared to resume normal activity. Chest exercises resulted in a little soreness mostly due, I believe, to atrophy. Almost two years later I’m back to normal in terms of bench press weight with no detectable issues or discomfort from my sternotomy. The healing of the sternum is usually complete after 8-12 weeks, so I’d bet any discomfort may be due to a little scar tissue stretching.
Allen Carkner George- you're probably correct about the atrophy and the scar tissue. It's hard to take it really sl ... Read more
Allen Carkner George- you're probably correct about the atrophy and the scar tissue. It's hard to take it really slow getting back into strength training.
Hit the 6 month mark post Ross AVR. Feeling excellent. I have some prominent bumps where my sternal wire ties are that can be sore if I mess with them or if ...Read more
Hit the 6 month mark post Ross AVR. Feeling excellent. I have some prominent bumps where my sternal wire ties are that can be sore if I mess with them or if they bump against something, but other than that, I think I can say I'm nearly 100%. Thanks everyone for their support and stories. It's always helpful to hear about shared concerns and experiences. I still get anxious about how long it'll hold up but I'm a work in progress.
Klara Čičić That sounds great, Allen! Hope things stay well for you.
Rose Madura Great report! Thanks for sharing and congratulations!
Grace Mason That is great news Allen. . I guess we are all a new work in progress, once we have had surgery. Be... Read more
Grace Mason That is great news Allen. . I guess we are all a new work in progress, once we have had surgery. Best wishes to you that things only get better.
Has anyone found that their pecs tended to get sore easily, even at 3 months after surgery. I just kind felt like I was mostly past that. I feel fairly "normal" ...Read more
Has anyone found that their pecs tended to get sore easily, even at 3 months after surgery. I just kind felt like I was mostly past that. I feel fairly "normal" mostly at this point. They just kinda feel funny, maybe they're just waking up more?🤷♂️ Also, I'm finding as I'm driving more and more for work, turning my head to look back puts a weird tension through my sternum that I haven't really noticed untill recently.
Andrew Dial I def noticed little things like that as I got more active. You’re re-stretching your body out. Pat ... Read more
Andrew Dial I def noticed little things like that as I got more active. You’re re-stretching your body out. Patience.. it will all pass in time
Pamela Gregory Yes! I notice when I do upper body (light weight) with cables, my abs (I think) and something in my l ... Read more
Pamela Gregory Yes! I notice when I do upper body (light weight) with cables, my abs (I think) and something in my lower ribs gets very aggravated. It is much better at 8 months but Definitely still happens
Allen Carkner Thanks for the comments. I'm sure it's just some muscles I haven't used much for a while getting used ... Read more
Allen Carkner Thanks for the comments. I'm sure it's just some muscles I haven't used much for a while getting used to work and driving again.
Today marks three Months since Ross procedure Aortic valve replacement at Keck. Feeling pretty good and am halfway through my second full week of work as a ...Read more
Today marks three Months since Ross procedure Aortic valve replacement at Keck. Feeling pretty good and am halfway through my second full week of work as a phlebotomist. Definitely get tired after work though. I'm ready for Friday. I'm a little sad that my work has essentially made it not feasible to continue rehab, it's just up to me now to keep moving.
Sue Lee Congratulations on your 3 month milestone. Make sure to take it easy and listen to your body. Hopeful ... Read more
Sue Lee Congratulations on your 3 month milestone. Make sure to take it easy and listen to your body. Hopefully things will quiet down at work over summer
Marie Myers Good to hear you are back to work! Starting back at work was a Great Leap Forward for me.
Grace Mason Congrats on a new milestone 👏. Hope you can implement your own rehab program to keep it going
Rose Madura I had so many complications that I was not turned over to rehab but I did my own. And I'm doing fine ... Read more
Rose Madura I had so many complications that I was not turned over to rehab but I did my own. And I'm doing fine. You can do it. It's great that you are able to go back to work after three months.
Andrew Dial Congrats man! Listen to your body… it will tell you when it’s time to rest.
Ana Brusso Good job Allen, you’re doing great. I also did my own rehab and are doing fine. Listen to Andrew, t ... Read more
Ana Brusso Good job Allen, you’re doing great. I also did my own rehab and are doing fine. Listen to Andrew, that’s good advice. Continued good health and God bless you
Do anyone's sternal wire's creap them out sometimes? I can feel the top one's pretty prominently. Not painful just kinda weird I guess.
Andrew Dial I can feel my top one. Doesn’t creep me out, it’s part of who I am now!
Ana Brusso I can feel them sometimes but not always.
Timothy Andre I can feel three of them. A little weird but it’s meeeee!! 🤪
Marie Myers I can feel and see the knot in several of them because I am so skinny. They don’t bother me a bit!
Pamela Gregory I can feel and see them and it creeps me out too!!! I don't like to touch it!
Valerie Allen Do those stay in or do they take them out?
Brady Busch I had a question about them,when first talking to my surgeon.She said that sometimes,they are removed ... Read more
Brady Busch I had a question about them,when first talking to my surgeon.She said that sometimes,they are removed,if causing trouble,like poking through the skin.
Valerie Allen Thanks Brady. I thought I read that someplace.
Allen Carkner Most of the time they don't bug me. It's just weird to not have a smooth sternum anymore guess. My st ... Read more
Allen Carkner Most of the time they don't bug me. It's just weird to not have a smooth sternum anymore guess. My sternum was always kinda bony so the wire bumps are very easy to feel. Definitely a good way to think about it Andrew, it's just the new me. I suppose if they irritate the skin or cause discomfort that would be the time to talk to a surgeon maybe.
Shelly Hubbard I was not able to get sternum wires do to nickel allergy I have. My surgeon put in like a medical gr ... Read more
Shelly Hubbard I was not able to get sternum wires do to nickel allergy I have. My surgeon put in like a medical grade something else so I do not feel the sternum wires.
Brady Busch Mine are a combination of wires and plates.
Started jogging a bit at rehab about two weeks ago only slightly faster than my walking pace. Super excited that I just did three minutes at speed 6mph as part ...Read more
Started jogging a bit at rehab about two weeks ago only slightly faster than my walking pace. Super excited that I just did three minutes at speed 6mph as part of some walk/run intervals and it felt great! I finally feel more like myself. I'm going into my 11th week starting Wednesday post Ross aortic valve replacement. Thank you everyone for being on here! This stuff can be challenging sometimes. I love hearing from everyone including wins and challenges. 😊
Andrew Dial That’s great man! You’re doing awesome.
Susan Lynn You're doing great, Allen! Best of luck with the remainder of your recovery!
Sue Lee Jogging at 11 weeks is impressive. Well done
Hello everyone, not sure why I'm feeling a bit in future heart surgery planning mode today but I am. I was wondering if anyone here has had a pulmonary valve ...Read more
Hello everyone, not sure why I'm feeling a bit in future heart surgery planning mode today but I am. I was wondering if anyone here has had a pulmonary valve or aortic valve transcatherter replacement more than once. Hypothetically a first transcather valve insertion, and then a second valve inserted within the first transcatheter valve years later. I find it hard not having a plan for after the 15-25 years that my pulmonary homograft will hopefully last.
I'm greatful for this community and know I certainly get anxious about my heart these days even after it's been "fixed". This is the first time in my life that I don't have any aortic stenosis or regurgitation yet I can't help but think about the next intervention a bit.
Paula Raines Hi...new to the group. I am a survivor of an Aortic Dissection (both ascending and descending). I wil ... Read more
Paula Raines Hi...new to the group. I am a survivor of an Aortic Dissection (both ascending and descending). I will be having another surgery at UWMedical. Super grateful to live near some of the best surgeons in the country.
Rose Madura Hi Allen, I have not had a TAVR but my aunt did and then she had a second one. Unfortunately, she go ... Read more
Rose Madura Hi Allen, I have not had a TAVR but my aunt did and then she had a second one. Unfortunately, she got cancer and recently died so I can't tell you any details as to how long they last. I think the technology of a 2nd TAVR is too new to have enough data. I hope your valve last a long time. God bless you.
Susan Lynn Allen - I understand your concern, but advancements in heart valve repair are moving at such an inc... Read more
Susan Lynn Allen - I understand your concern, but advancements in heart valve repair are moving at such an incredible pace, I suspect anything will be possible within the next 15-20 years. As amazing as medicine is now, the upcoming approaches are likely unfathomable even by today's heart surgery community. Enjoy every day of your life - the future is bright!
Sue Lee Allen, enjoy today! It sounds like your recovery is going really well and hopefully you can make leap ... Read more
Sue Lee Allen, enjoy today! It sounds like your recovery is going really well and hopefully you can make leaps and bounds in coming weeks and days. 15-25 years from now, cardiac care will be even more amazing than now.
Hello everyone, I was wondering when most of you have returned to work after surgery? I realize this is a very nuanced question but I'm just getting to the ...Read more
Hello everyone, I was wondering when most of you have returned to work after surgery? I realize this is a very nuanced question but I'm just getting to the point that I feel a bit of pressure to return/ don't know how long disability insurance with approve. I just don't feel mentally or physically prepared to return to my semi-stressful job at this point. I am aproaching 8 weeks post-op and feel like 12 would get me more prepared to return. I have to be on my feet all day and it can be pretty fast paced work at times. I'm a phlebotomist. Thanks!
Susan Lynn Allen - I have a sedentary job so I started working quickly, but you may want to try a part- time s... Read more
Susan Lynn Allen - I have a sedentary job so I started working quickly, but you may want to try a part- time schedule and work your way up to full-time. I was exhausted for quite awhile after surgery. I couldn't have handled that much exertion after 8 weeks. You'll know immediately if you're overdoing it. Good luck!
Klara Čičić It was 5 months for me. I wasn't ready before that, more mentally than physically...but both.
Patricia Miller Allen- Does your FMLA and short term disability form go up to 12 weeks? Maybe give your HR departmen ... Read more
Patricia Miller Allen- Does your FMLA and short term disability form go up to 12 weeks? Maybe give your HR department a call Monday. You may end up being rerouted to the short term disability group. I work at a hospital also. I had robotic Mitral valve repair so recovery was expected to be 3- 6 wks. (much less than sternotomy surgery). I requested 4 wks on my form that the surgeon's office signed. I later regretted not putting full 6 wks on it. I thought I was ready to go back at 3 1/2 wks and didn't want to deal w/ more paperwork. Pressure to go back to work, mostly from myself. My job is 70% at the desk. You definitely are in a physically demanding job and back fulltime could be exhausting. Is returning half days an option? I'm not sure if that would void the short term disability but worth asking about. I ended up w/ some complications that were probably just unlucky, but wonder if returning to work too early contributed to it. Your recovery is more important than anything else. You come first. Delay your return to work if you need more time to heal.
Allen Carkner Thank you for the comments. I think I should be alright going 12 weeks with my work. I want to be con ... Read more
Allen Carkner Thank you for the comments. I think I should be alright going 12 weeks with my work. I want to be confident in my health before getting back to it.
Pamela Gregory I went back at 10 weeks and it was way to early for me!!! Mentally it was horrible. I don't think I ... Read more
Pamela Gregory I went back at 10 weeks and it was way to early for me!!! Mentally it was horrible. I don't think I am being dramatic either. If you can wait longer and don't feel ready then don't do it.
Cameron Peek I felt the same as you at 8 weeks and stayed out till 12.
I'm aproaching 2 months post-op from my Ross procedure and I still find myself with aches and soreness in places that I've never had pain before. My ribs under ...Read more
I'm aproaching 2 months post-op from my Ross procedure and I still find myself with aches and soreness in places that I've never had pain before. My ribs under my armpits, my pecs are tight all the time and it has a tendency to make my posture poor. At this point I'm doing well at Cardiac rehab walking about as quick as I can before a jog but it just feels like I should be without some of the aches I have. Sometimes the aches make me nervous that it's heart related but I think they are just sore muscles. Did others have soreness that made them anxious about their heart after median sternotomy? My recent echo showed good valve gradients and output so I think my heart is better than ever. It's just hard not to feel anxious when the soreness is in the chest and arm. I woke up with a bit of mild pain when I breath in deeply. I feel like I'm just overthinking. Thanks everyone for supporting one another. This is a odd time in my life for sure. I didn't think I'd be needing this at 24 years old.
Annette Sterzel Hi Allen, 3 months ago I had a mitral valve replacement and tricuspid valve repair. I experienced pai ... Read more
Annette Sterzel Hi Allen, 3 months ago I had a mitral valve replacement and tricuspid valve repair. I experienced pain almost until 3 months. The cardio rehab I am going to told me to stretch my arms out not too far and bring them back in. I can’t believe how much that helped. When I had pains in my chest I did circular motion curled around where the stitches were and that helped a lot. Hope you feel better soon.
Marie Myers Sorry you had to have surgery at such a young age. I think it is very common to have muscle aches and ... Read more
Marie Myers Sorry you had to have surgery at such a young age. I think it is very common to have muscle aches and pains for weeks after open heart surgery. I could not wait until I felt i could lay on my stomach and get a massage! My upper back and shoulders were the problem areas for me. Plus the anxiety associated with the whole experience makes you wonder about every little ache, pain, and weird feeling. It all gets better with time. Some gentle stretching and yoga might help. Hope you find some relief soon.
Rose Madura Allen, I'm quite a bit older than you so keep that in mind but I had lots of ached and pains for quit ... Read more
Rose Madura Allen, I'm quite a bit older than you so keep that in mind but I had lots of ached and pains for quite a while after surgery. Keep in mind that they basically immobilize you during surgery and you are in one position for hours. It will get better. Hang in there. And I agree with Marie, that we are super aware of every ache and pain after surgery. God bless you.
Mary Jewett Hi Allen, I had an aortic valve replacement in 2020 and had similar type pain as you describe for we... Read more
Mary Jewett Hi Allen, I had an aortic valve replacement in 2020 and had similar type pain as you describe for weeks, probably close to three months or longer. Like Marie mentioned the worst pain for me was the upper back and shoulder pain but I also did have that tightness across the chest quite bad. Prior to my surgery I had heard people mention back pain but had no idea how bad it was going to be, of course, three years out it is all a distant memory now. My 26 year old son also had an aortic valve replacement six months after I did and I recall him having all the same types of pain. Give it time, it will fade and eventually it will go away. Two months out is quite early to expect to be feeling like your old self. Go easy on yourself!
Erin Feaker You are not alone. I am just barely past 2 months and still have aches and pains in my chest, shoulde ... Read more
Erin Feaker You are not alone. I am just barely past 2 months and still have aches and pains in my chest, shoulder and back (mostly right side). I am trusting that they will get better as others have said. Other than that I feel great!
Four weeks post Ross Procedure and doing well. I had mine done at USC by Dr. Starnes ans his team. Excellent care there. I certainly feel my heart pounding ...Read more
Four weeks post Ross Procedure and doing well. I had mine done at USC by Dr. Starnes ans his team. Excellent care there. I certainly feel my heart pounding sometimes but I hear that's not unusual. I'm greatful that I had him as my surgeon.
Klara Čičić Good for you, Allen, sound like you are doing fine! Hope your recovery stays that way. All the best!