This weeks marks 1 year since my Ross procedure!
It's been awhile since I've posted here, but I still check in frequently and read y'all's posts, and I appreciate ...Read more
This weeks marks 1 year since my Ross procedure!
It's been awhile since I've posted here, but I still check in frequently and read y'all's posts, and I appreciate all the help you all have given me and everyone else here.
A recap of my story: I was at the cardiologist for a something unrelated, and when he listened to my heart, he knew something was up. I was completely asymptomatic as near as I could tell, so when the TEE I had later came back saying I needed open heart surgery within the next couple months, it was a big surprise.
Those couple months between diagnosis and surgery felt like about 10 years, what with all the decisions to make, all the fear, all the questions, all the worry. This last year since the surgery has gone by like a month or two.
I was hoping that even though I was asymptomatic, that I'd feel like a brand new superman or something after I recovered from the surgery. I do feel better, but I'm still the same old me who needs to exercise more. :-)
For years, I've struggled with panic attacks that can ruin an otherwise good day. Of course, hearing that I needed open heart surgery sent that anxiety into overdrive, and I was worried about the psychological toll going through something like that would take, especially since most of my anxiety and panic attacks were health-related (I try real hard not to be the annoying hypochondriac stereotype that I'm sure doctors *love* dealing with...).
Everybody's different, but I'm happy to report that my anxiety and panic attacks have been much better now that I've recovered. I think the combination of being physically healthier (even in small ways that I might not realize or feel), and the, uh... character-building experience... of surviving open heart surgery have helped to change my perspective a little bit. I still get the occasional panic attack out of nowhere, and it still sucks, but I just feel more confident in general now.
I've had my 6-month and 12-month followups, luckily with nothing "exciting" to report, so at this point I'm just keepin' on keepin' on.
To Adam Pick for running this place all these years, and to all of you for posting here, thanks again, so much, for all of your stories, encouragement, and information. It really, really helped me navigate through all of this, and it was so, so comforting to be able to talk and vent and discuss with people who have been/are going through it. ❤
Marie Myers Great post and Happy anniversary!! I can definitely identify with a lot of things you wrote. Keep on ... Read more
Marie Myers Great post and Happy anniversary!! I can definitely identify with a lot of things you wrote. Keep on keeping on !
stephanie arnold me too. as a certified stress cadet, this particular life event has truly rearranged me. ( 3 months p ... Read more
stephanie arnold me too. as a certified stress cadet, this particular life event has truly rearranged me. ( 3 months post aortic valve replaced/ aneurysm fixed)😳
Nicole DuPont Congrats! A milestone to celebrate for sure!!
Minor Victory of the Day: Just now, for the first time since my open heart surgery over 6 weeks ago, I sneezed!
"Who cares, Adam?"
I care! My father-in-law ...Read more
Minor Victory of the Day: Just now, for the first time since my open heart surgery over 6 weeks ago, I sneezed!
"Who cares, Adam?"
I care! My father-in-law had his open heart surgery years and years ago, and he told me he can remember the exact time, date, and place when he first sneezed during recovery, because it hurt so bad. So, my whole recovery, I've been dreading my first sneeze.
Somehow, I managed not to sneeze for over 6 weeks. Just now, I sneezed twice, and it didn't hurt at all. I guess my sternum is healing after all!
tim miller I remember sneezing and it hurt like heck
Joe Tarango Nice, glad to hear you're healing quickly! I have had several sneezes and all have been painful but m ... Read more
Joe Tarango Nice, glad to hear you're healing quickly! I have had several sneezes and all have been painful but manageable. Looking forward to the day it doesn't hurt.
Joy Vera Glad to hear you passed the sneeze test, Adam. Congratulations on your progress!
Rose Madura I didn't have much pain sneezing either.
Erik Jensen Sneezing was the worst! I had OHS 6 weeks ago and sneezing is fine now. Whew.
It's been a little over a month since my surgery (I had the Ross Procedure, and they also repaired my ascending aortic aneurysm), so I thought I would give ...Read more
It's been a little over a month since my surgery (I had the Ross Procedure, and they also repaired my ascending aortic aneurysm), so I thought I would give an update.
It is so, so hard to believe that the surgery a) has already happened, and b) happened a full month ago. When the folks on this site said that the waiting part is the hardest, they were right (in my case, anyway). Recovery has been no picnic, but it has been easier and quicker than my wife and I were expecting.
Since I've been home, I've had one episode of what I think was A-fib. My cardiologist told me to let him know if I experience anything else, but for now, we're just keeping an eye on it. I'm still on Amiodarone, though they lowered my dosage. They also took me off the Lasix and potassium they had me on.
I start cardiac rehab in mid-September, so for now I'm just trying to walk as much as I can to build up my endurance. I don't recall exactly when it happened, but sometime during week 3 and week 4, from one day to the next I felt less... frail, all the sudden. I still hurt, I'm still sore, and I still can't lift more than 10 pounds, but I went from feeling like I might just fall apart, to feeling a lot more like my normal self.
After about 4 weeks, my surgeon told me I could go ahead and drive, so long as I was no longer taking any narcotics. I still didn't feel up to it, so I held off for about a week. This week, though, when I had prescription to pick up nearby, I decided to go for it. Luckily, I'm still alive, and so is everyone else on the road. :-)
The main issue I'm dealing with now is my incision. It's healing nicely, except for a few areas that have, for lack of a better and less gross term, come open a little bit. It's not like I can see clear into my chest through it or anything, but there is some drainage going on. I've visited my surgeon about it, and he doesn't seem too concerned. He put me on some antibiotics and a new wound-care routine, and it seems like things are improving, but I will definitely be glad when all this is all completely healed up.
Catie B All in all, things sound very good. Starting to drive again is such a great feeling! Hopefully, they' ... Read more
Catie B All in all, things sound very good. Starting to drive again is such a great feeling! Hopefully, they'll be able to take you off the Amiodarone in just a few weeks. My incision gapped open, too, a couple of times and I found it startling. But they were reassuring at my GP's office and you'd never know, once the area healed. Great work with cardiac rehab and your walking! Best to you!
Adam Pick Inch by inch, step by step, block by block, mile by mile... Your journey to recovery will continue. ... Read more
Adam Pick Inch by inch, step by step, block by block, mile by mile... Your journey to recovery will continue. As a fellow Ross Procedure patient, I can relate to pretty much everything you posted. You’re doing great Adam. Keep it up. And... I think cardiac rehab is going to help you immensely. For me, cardiac rehab took my recovery from 1st to 4th gear.
Ann Crone Hi Adam, tomorrow will make 4 weeks for me post surgery as well. I'm definitely feeling better and l ... Read more
Ann Crone Hi Adam, tomorrow will make 4 weeks for me post surgery as well. I'm definitely feeling better and less frail than the first two weeks. I still have days where incision pain or muscles and nerves growing back make me frustrated by the end of the day. I'm only taking Tylenol at this point. I too was told I could drive short, slow distances but I'm going to wait until 6 weeks. Luckily my husband can drive me. My cardiac rehab starts with orientation next week. I too have had some a-fib and am on Amiodarone and metoprolol (low dose).
Erik Jensen Adam - it's great to hear about your progress. I started cardiac rehab last week and I really enjoy i ... Read more
Erik Jensen Adam - it's great to hear about your progress. I started cardiac rehab last week and I really enjoy it. Best of luck as you continue to heal!
Joy Vera Feeling less frail is the perfect way of expressing how it feels to begin turning that corner. All i ... Read more
Joy Vera Feeling less frail is the perfect way of expressing how it feels to begin turning that corner. All in all, it sounds like you are right on track & ready for cardiac rehab which is so helpful. Congrats on your progress!
Tracy Fallu You hit the nail on the head..... feeling less frail. Each day you will notice your endurance increas ... Read more
Tracy Fallu You hit the nail on the head..... feeling less frail. Each day you will notice your endurance increasing. If a day pop ups that you feel you need extra rest, do just that. Healing vibes to you.
Rose Madura We were walking on eggshells for about 8 weeks because of all my complications but agree the "turning ... Read more
Rose Madura We were walking on eggshells for about 8 weeks because of all my complications but agree the "turning the corner" feeling is great. Best wishes for continued recovery.
I took a shower in the hospital today, mostly by myself. Well, ok, I had to have like two people help me at first, but then I got more than like three seconds ...Read more
I took a shower in the hospital today, mostly by myself. Well, ok, I had to have like two people help me at first, but then I got more than like three seconds of privacy! It was great!
(I seriously appreciate my nursing staff, though. They've been great, and have done an excellent job of keeping me alive.)
Erik Jensen Haha...the little things! Glad you continue to improve.
I don't really have much to say, but I thought I'd give a quick update.
I'm still in the hospital, but other than some oxygen issues I'm doing pretty well. ...Read more
I don't really have much to say, but I thought I'd give a quick update.
I'm still in the hospital, but other than some oxygen issues I'm doing pretty well. My dependence on oxygen is decreasing, and there is a chance I might get out of the hospital on Sunday. We'll see. I'm anxious to get home, but I don't want rush things.
Thank you all for all of your support!
Erik Jensen Keep battling Adam! Glad you're doing pretty well overall. I bet you're climbing the walls - I know I ... Read more
Erik Jensen Keep battling Adam! Glad you're doing pretty well overall. I bet you're climbing the walls - I know I will be too. Continued good luck on a speedy recovery.
Susan Lynn Thanks for the update, Adam. Take your time. You'll see improvement with every passing day! ❤
Adam is doing ok today. He's feeling pretty nauseous, but he was able to take a very short walk. He'll probably start getting more energy once he feels like ...Read more
Adam is doing ok today. He's feeling pretty nauseous, but he was able to take a very short walk. He'll probably start getting more energy once he feels like eating!
Catie B I fought nausea for quite a long time and requested help for it often. Hope they will add something t ... Read more
Catie B I fought nausea for quite a long time and requested help for it often. Hope they will add something that eases it to his drug regimen! There are some good meds that can make a difference.
Joy Vera The pain meds cause nausea for me &, once I stopped taking them, no more nausea. Fortunately for me, ... Read more
Joy Vera The pain meds cause nausea for me &, once I stopped taking them, no more nausea. Fortunately for me, Tylenol was enough but I understand there are meds to counter the nausea if the stronger pain meds are necessary. Hope he's feeling better soon.
Adam Collins Thanks for the information, Catie and Joy! He ate a little bit of food at lunch. We know he needs to ... Read more
Adam Collins Thanks for the information, Catie and Joy! He ate a little bit of food at lunch. We know he needs to eat to start getting his strength back!
Joey Hardee I had a tough time getting my appetite back. Food just didn’t taste good for a few days. I made mys ... Read more
Joey Hardee I had a tough time getting my appetite back. Food just didn’t taste good for a few days. I made myself eat but I really could only stomach grapes, popsicles and yogurt when I started eating. Did help to reduce the pain meds. Praying Adam gets better soon!
Adam should be ready to start writing his own updates soon! He's doing better this morning and will be moved out of ICU today. The surgeon came by and said ...Read more
Adam should be ready to start writing his own updates soon! He's doing better this morning and will be moved out of ICU today. The surgeon came by and said that everything is looking good.
Adam Collins He's finally out of ICU and in his own room. He had been "about to leave" all day, and having to wait ... Read more
Adam Collins He's finally out of ICU and in his own room. He had been "about to leave" all day, and having to wait was really frustrating.
Susan Lynn Excellent news! Glad his recovery is going well!
Adam Collins Adam is doing ok, but he's been pretty uncomfortable and grumpy all day. We're hoping he will get som ... Read more
Adam Collins Adam is doing ok, but he's been pretty uncomfortable and grumpy all day. We're hoping he will get some good sleep tonight and feel more comfortable tomorrow!
Adam's wife here again. He's doing ok but will have to stay in ICU tonight. At 6:00 this morning, they moved him into a chair and had him sit there for four ...Read more
Adam's wife here again. He's doing ok but will have to stay in ICU tonight. At 6:00 this morning, they moved him into a chair and had him sit there for four hours. He was in a much better mood once they let him lay back down. He's had a bipap breathing mask on all day, but his oxygen level isn't high enough to leave the ICU. Other than that, and some pain and nausea, he seems to be doing relatively well. He's getting a little bit of sleep off and on.
Catie B Sorry to hear about this bump in the road. Praying for his 02 level now and hope they'll be able to r ... Read more
Catie B Sorry to hear about this bump in the road. Praying for his 02 level now and hope they'll be able to release him to step-down unit soon.
Mike Roskowinski Hoping he gets out of ICU soon. I ended up with C-Diff and was stuck in the ICU for 5 days. It was ... Read more
Mike Roskowinski Hoping he gets out of ICU soon. I ended up with C-Diff and was stuck in the ICU for 5 days. It was not fun at all. It is way better in step-down.
Susan Lynn Thank you for the update! Sitting in the chair for four hours was a good sign of progress. Every a ... Read more
Susan Lynn Thank you for the update! Sitting in the chair for four hours was a good sign of progress. Every activity is pretty tiring in the beginning. They'll get his oxygen level up and the spirometer will also help. You're in good hands! Please give Adam our best wishes! ❤
Erik Jensen Been thinking about you Adam. Here's hoping you get out of the ICU soon!
Joy Vera They'll take really good care of him in ICU but I have to agree with Mike that moving to the next ste ... Read more
Joy Vera They'll take really good care of him in ICU but I have to agree with Mike that moving to the next step is a good thing. Hope his oxygen level improves soon.
Adam Collins Thank you, Erik and Joy! He'll be moving out of ICU today.
Erik Jensen Great to hear the operation went well and Adam is now on the recovery side!
Rose Madura Great updates! Glad he is on the recovery side now.
Adam Collins Willie, Erik, and Rose - thank you! The breathing tube is out, he's been talking and making jokes, an ... Read more
Adam Collins Willie, Erik, and Rose - thank you! The breathing tube is out, he's been talking and making jokes, and now it's time for both of us to get some sleep.
Nicole DuPont Great news! Congrats on a successful surgery and all the best to you as you heal.
Adam Collins Thank you, Nicole! Adam is still doing well this morning. He wasn't getting enough oxygen during the ... Read more
Adam Collins Thank you, Nicole! Adam is still doing well this morning. He wasn't getting enough oxygen during the night, so they put a breathing mask on him. They're moving him to a chair to sit up, and that should help with his breathing.
I need to be at the hospital for my surgery tomorrow at 7 AM, it's 2:30 AM now, and I haven't been able to sleep. Luckily, my wife is driving me there tomorrow. ...Read more
I need to be at the hospital for my surgery tomorrow at 7 AM, it's 2:30 AM now, and I haven't been able to sleep. Luckily, my wife is driving me there tomorrow. I'll be so glad to get this over with tomorrow, finally.
Susan Lynn Adam - You're exactly where you need to be emotionally - ready to get it done. It's wonderful to en ... Read more
Susan Lynn Adam - You're exactly where you need to be emotionally - ready to get it done. It's wonderful to end the waiting and put surgery behind you. I'm curious, since you just found out about your heart issues, is it possible your panic attacks were actually symptoms of your heart condition and misdiagnosed? I understand it's more common than we'd think. You might be getting rid of both problems tomorrow.
Remember, surgery feels like a one minute nap and it's over. We'll be here to welcome you to recovery! All the best! ❤
Adam Collins Thank you for your encouragement. It really does mean a lot to me.
Jeff Baker Wishing you a successful surgery Adam, you will do great!
Joe Tarango You're going to do great Adam. I will be praying for all of you.
Yesterday, I went in for my pre-op testing, and that all went well. I even felt comforted seeing all the nurses and staff involved, and how all of this seemed ...Read more
Yesterday, I went in for my pre-op testing, and that all went well. I even felt comforted seeing all the nurses and staff involved, and how all of this seemed so routine for them. So, all in all, I was feeling pretty good about everything yesterday morning.
Then the surgeon's office called to move my surgery up 2 days, making it happen on July 22nd instead of July 24th. I am fully on board with moving the date up, as I want to get this over with as soon as possible. Still, though, getting that call just wrecked me, emotionally. I have no idea why, but I was a mopey mess pretty much all day yesterday after learning that the surgery date had been changed.
Luckily, I'm feel better about it this morning. I'm still having a hard time being positive, though. When I think about the future, it pretty much stops on the surgery date, like I'm having trouble seeing past it. Various wonderful and helpful people in my life are trying to make plans for this or that during my recovery, and it's like it's impossible for me to focus on anything past the surgery itself.
Jeff Baker Hi Adam, I feel the same way. I just want the surgery over so I can get on with my life.
Joy Vera Interesting what you said about being fully focused on the surgery & that seems totally appropriate t ... Read more
Joy Vera Interesting what you said about being fully focused on the surgery & that seems totally appropriate to me. Focus on that now. Focus on recovery when it's time for that & focus on the future when it seems time to do that. One step at a time.
Erik Jensen I feel you Adam. My surgery is week after next and it's literally all I can think about. I'm so happy ... Read more
Erik Jensen I feel you Adam. My surgery is week after next and it's literally all I can think about. I'm so happy I found all of you so I can talk about it with people who are walking in my shoes. I too am ready to just get on with it. Hang in there...pretty soon you'll have it all behind you.
Susan Richards I agree about having trouble thinking beyond the surgery. It's like the surgery date completely divi ... Read more
Susan Richards I agree about having trouble thinking beyond the surgery. It's like the surgery date completely divides my life into before and after right now. I feel like I have to get the house all cleaned, projects finished, everything completely caught up, as if I'll never have a chance to do it again. It's silly, I know. We go to the beach with several of our friends every October and I feel uncomfortable making plans for that right now, as if I shouldn't commit. I'm just trying to make myself "cross each thing off the list" as it comes and not look too far ahead.
Rose Madura All normal feelings for all of you. When my surgery date changed, I cried almost all day! I even watc ... Read more
Rose Madura All normal feelings for all of you. When my surgery date changed, I cried almost all day! I even watched a documentary about the JFK assassination just to get my mind on something else. My brother is a doctor and he told me in 3 moknths after the surgery, I'd be wondering why I worried so much. Although I did have a lot of complications (I'm very symptomatic), the doctors, EMTs, ER etc...all knew what to do and they figured it out. They do this every day and are very good at what they do. Trust the doctors and trust that God will bring you through.
Marie Myers Open heart surgery was a real emotional as well as a physical journey for me. Don’t be surprised at ... Read more
Marie Myers Open heart surgery was a real emotional as well as a physical journey for me. Don’t be surprised at having roller coaster emotions throughout the experience. Wishing you all the best!
So, I've chosen a surgeon and set a date.
I'm going with Dr. C. Craig Elkins at Integris Heart Hospital in Oklahoma City, OK, and he's going to perform the ...Read more
So, I've chosen a surgeon and set a date.
I'm going with Dr. C. Craig Elkins at Integris Heart Hospital in Oklahoma City, OK, and he's going to perform the Ross Procedure bright and early on Wednesday, July 24th. If for some reason the Ross Procedure won't work out (if my pulmonic valve is bicuspid too, for instance), then the backup plan is a homograft (human donor tissue) valve.
... anybody got a barrel of Valium I can borrow?
Susan Richards I feel ya! My surgery is on the 24th too and that anxiety is a constant companion at this point!!
Susan Lynn Adam - Congrats on selecting your surgeon and booking your surgery. To you and Susan, waiting is ab ... Read more
Susan Lynn Adam - Congrats on selecting your surgeon and booking your surgery. To you and Susan, waiting is absolutely the worst part. You'll be calm the day of surgery and be anxious to put it behind you. It truly feels like a one minute nap and it's over. You both can do it! ❤❤
Joy Vera I have to agree the waiting is difficult but, as Susan says, the day of surgery goes quickly. Then y ... Read more
Joy Vera I have to agree the waiting is difficult but, as Susan says, the day of surgery goes quickly. Then you'll be on the recovery side & that's a good place to be - on the way to getting better! Best wishes.
Rose Madura The waiting is horrible. I agree. But sok , you'll be in the recovery side. Remember that the odds ... Read more
Rose Madura The waiting is horrible. I agree. But sok , you'll be in the recovery side. Remember that the odds are in your favor. Try to relax and do something fun to take your mind off the surgery. Best wishes and keep us posted.
Jeff Baker Hi Adam, I scheduled my surgery three weeks ago and it isn't until August 6th so I still have three ... Read more
Jeff Baker Hi Adam, I scheduled my surgery three weeks ago and it isn't until August 6th so I still have three weeks to go. My surgeon said he could have scheduled me in two weeks but to make sure my wife would be able to be with me the whole time we had to schedule further down the line because of her work schedule. The waiting stinks.
Mary Letschert Good luck Adam.. Make your come backs stronger than your setbacks....
That was my mantra 9 months a ... Read more
Mary Letschert Good luck Adam.. Make your come backs stronger than your setbacks....
That was my mantra 9 months ago ..
Micah Cooper Hi Adam, I had the Ross procedure 18 years ago performed by your surgeon's father, Dr. Ronald Elkins ... Read more
Micah Cooper Hi Adam, I had the Ross procedure 18 years ago performed by your surgeon's father, Dr. Ronald Elkins. He was a stern man, but a fantastic doctor. I was informed this year that my aortic valve is leaking again, but this after 18 worry free years of completely normal living (and my Dr. says I have up to 5 more years before a reop), so I am not complaining. I wish you all the best! ( I am 39 now, btw)
I met with a surgeon earlier this week. His suggestion for me is to get the Ross procedure. For some reason, I hadn't been considering that as an option for ...Read more
I met with a surgeon earlier this week. His suggestion for me is to get the Ross procedure. For some reason, I hadn't been considering that as an option for me, but it's what he recommended.
I asked him how many Ross procedures he's done, and he said he's done over 200 of them. That seems like a lot to me, but I'm not sure. This surgeon's father is a heart surgeon as well, and the father has his name on quite a few medical journal papers about the Ross procedure, so the Ross procedure kinda seems to be their "thing."
I'm fine and maybe even a little excited to have the Ross procedure, but another decision to make is what to do if they get in there and find out that my pulmonary valve isn't suitable for the Ross procedure. The surgeon's recommendations for what to use to replace my AV are, in order: homograft (human donor) valve, mechanical valve, porcine/bovine valve. This threw me for a loop, as I'd not read much at all about using a homograft to replace the AV. My understanding is that the homografts have a better chance of lasting longer than animal tissue replacements, and it wouldn't require blood-thinners like the mechanical valve would. Ultimately, the choice is up to me, but those are his thoughts on the issue.
So, I have a bunch of decisions to make, it seems. I'm planning to get a second opinion from another surgeon as soon as possible as well.
Rob Sparling Adam, welcome! Your curiosity is an asset. Keep digging, man. Don’t stop the data accumulation unt ... Read more
Rob Sparling Adam, welcome! Your curiosity is an asset. Keep digging, man. Don’t stop the data accumulation until you are on the table! I joined another community — nowhere near as warm and friendly — that seems to have a lot of homograft patients and they (anecdotally) seem to have 15+ year life spans. Not sure why that was never something discussed in my case, but I was also given an option other than bioprosthetic and I elected to do that. Please read my journal for more. (Sept 25th 2018 would be where to start.). There are Ross experts here, too, and you should focus at least some energy on getting a seriously gifted surgeon/cardiologist combo and know they are your perfect fit! You will get through this and you will be supporting others in short order.
Marie Myers The founder-guy of this website Adam Pick, had a Ross procedure. I am sure he can point you in the ri ... Read more
Marie Myers The founder-guy of this website Adam Pick, had a Ross procedure. I am sure he can point you in the right direction for info.
James Martinez I am 39 years old, so similar age to you. I just had a Ross procedure done about 5 weeks ago to fix m ... Read more
James Martinez I am 39 years old, so similar age to you. I just had a Ross procedure done about 5 weeks ago to fix my bicuspid aortic valve.
It was a shock to me when I first found out I had a BAV at the age of 38. I didn't have any symptoms like shortness of breath etc. A heart murmur was found during a routine check-up. But sure enough symptoms started to follow about 6 months after discovery, and 6 months after that it was recommended I get a valve replacement. As both my stenosis and regurgitation had worsened from the previous year. My first cardiologist recommended a mechanical valve. Her reasoning was that I’m relatively young and it has good longevity. I was worried about taking lifelong blood thinners required for a mechanical valve. And the impact it would have on my day to day life and being a father to a young child that requires a very active lifestyle. So I then started to do research. After some digging around, I found out about the Ross procedure. The benefits were that it had great longevity without the need for long term blood thinners.
Luckily, I was able to self-refer myself to Dr. Starnes at USC Keck Medical Center. Who specializes in the Ross procedure. I’m so glad I found him. He has performed over 500 Ross procedures. His success rate is 99.8%. After my initial consultation, my wife and I were both agreed that Dr. Starnes would be the one. He agreed that I was a good candidate for a Ross. And here I am, 5 weeks post-surgery and feeling better every day!
I agree with what others have posted. Whatever procedure you decide on, go to a surgeon who does high volume. I think I will apply this advice for any future surgeries for myself and my family.
For me personally, I would have travelled any distance to seek the best surgeon. Luckily, I believe I found the best (at least one of the best) and he happened to be only a 3 hour drive away.
I think it is wise to get a second opinion and search for a cardiologist/surgeon that you are 100% comfortable with. I’m sure glad I did and it led me to what I believe was the best option for my condition.
Lenore Mitchell Please see my post today regarding my own experience in traveling from Denver to Cleveland clinic and ... Read more
Lenore Mitchell Please see my post today regarding my own experience in traveling from Denver to Cleveland clinic and why I chose to do so. Good luck!
Adam Pick Hey Adam! Hmmmm. I'm gonna guess that your surgeon's last name starts with an "E" maybe? If so, I' ... Read more
Adam Pick Hey Adam! Hmmmm. I'm gonna guess that your surgeon's last name starts with an "E" maybe? If so, I've heard great things about him. So you know, the RP has been a great solution for me. 13 years later no re-operation. Fingers crossed... I get another 13 years. If not, I'm thinking that a TAVR will help me with Phase II of treatment. For reference, I'll throw up some educational links that might help you and the other members of our community learn about the Ross Procedure. Best of luck in your choice!!!
https://www.Heart-Valve-Surgery.com - Learn the advantages of the Ross Procedure surgery for patients with aortic valve disease in this special video with Dr...
Adam Pick Free eBook - Advantages of the Ross Procedure - https://www.heart-valve-surgery.com/Ross-Procedure-eB ... Read more
Adam Pick Free eBook - Advantages of the Ross Procedure - https://www.heart-valve-surgery.com/Ross-Procedure-eBook.pdf
Get important information about the Ross Procedure for aortic valve replacement patients that have aortic stenosis or regurgitation.
Adam Collins Thank you all for your advice. I really do appreciate it. This is all still so much to take in, but ... Read more
Adam Collins Thank you all for your advice. I really do appreciate it. This is all still so much to take in, but hearing what y'all've been through and about the decisions you've made really helps.
Adam Pick: Yep, the surgeon I saw is Dr. Elkins. The more I learn about him the more encouraged I am. Thank you for the info on the Ross procedure (and also, this whole site!).
I'm currently trying to figure out how to choose a surgeon. This feels like a decision that I am entirely unequipped to make.
I've seen others on here talking ...Read more
I'm currently trying to figure out how to choose a surgeon. This feels like a decision that I am entirely unequipped to make.
I've seen others on here talking about going to some fancy places like Mayo Clinic, Cleveland Clinic, etc., and I'm not sure if that's what's required for a successful outcome or not or how to go about doing it if it is. I don't like the idea of travelling long distances to such a place (I'm in Oklahoma), and I reeeaaaally don't like the idea of travelling that same distance back home with cracked open chest. So I'd like to stay local, if possible, but I'd also like to not die on the table, if possible, so I don't want to rule out going to a fancy clinic just yet.
I am meeting with a local surgeon tomorrow that my cardiologist strongly recommends. My cardiologist says that if he or one of his loved ones had to have this surgery, this is the surgeon he would choose to do it. I've seen some ratings of surgeons online that make me hesitant to choose this surgeon, but we'll see what he has to say tomorrow. Maybe he'll be able to explain things to me and inspire lots of confidence, who knows.
Forgive me for being too morbid, but I just feel like I'm taking a test I haven't studied for, and that if I don't do well on the test, I'll die.
Brett Kurtz Hey Adam. From someone who just went through this, I would say always pick a hospital and surgeon tha ... Read more
Brett Kurtz Hey Adam. From someone who just went through this, I would say always pick a hospital and surgeon that does a high volume of the surgery you need. This advice came from friends who are all in the medical field.
Marie Myers I went with a local surgeon who was excellent. At the time of my diagnosis, I was too overwhelmed at ... Read more
Marie Myers I went with a local surgeon who was excellent. At the time of my diagnosis, I was too overwhelmed at the idea of traveling for surgery. There are great surgeons everywhere, and you just have to find them. If there is anyway you can contact the nursing staff in the ICU or Cardiovascular surgery unit, they can tell you whose patients do the best.
I should add, my local surgeon is part of a very busy heart program that operates daily. You do want a place that does some volume.
Joy Vera Adam, like you, I decided traveling was not what I wanted to do for my surgery. I've now had 2 surge ... Read more
Joy Vera Adam, like you, I decided traveling was not what I wanted to do for my surgery. I've now had 2 surgeries done by this group of cardiologists - one in 2010 & one last May. My first surgeon was recommended by my primary care physician & was one of the 2 senior surgeons in the group. He retired &, a few years ago, I needed to find another one so I relied on the advice of my first surgeon's nurse in choosing a surgeon for round 2. I saw my second surgeon annually for about 3 years for monitoring of an aortic aneurysm so I was comfortable with him by the time I needed surgery #2. So, in addition to reviews & checking on their experience level (# of surgeries like Brett said), I relied quite a bit on recommendations. I live in the Austin, TX area. Good luck with your meeting tomorrow.
Rose Madura Hi Adam. Your concerns are very valid. My cardiologist recommended two from the same practice and w ... Read more
Rose Madura Hi Adam. Your concerns are very valid. My cardiologist recommended two from the same practice and we went with one of them. He had a lot of experience and four different nurses told us he was brilliant. And he was. I agree with Marie and agree that you want one who has done the surgeries frequently and a hospital that has as well. It's worth trying to talk to an ICU nurse if possible. But you don't have to feel like you must go to the Cleveland Clinic or Mayo clinic. I'm sure you can fine a great surgeon in OK. I hope the visit tomorrow works out for you. You have to be comfortable with your surgeon.
Joey Hardee Hey Adam. I would tell you to do a lot of research and do not let geography be the top deciding facto ... Read more
Joey Hardee Hey Adam. I would tell you to do a lot of research and do not let geography be the top deciding factor. I thought this was a great video for questions and used it when I consulted. You WILL ultimately make the right choice for you, Adam.
https://www.heart-valve-surgery.com/videos/questions
Learn 12 important questions to ask your heart surgeon before the operation from Dr. Kevin Accola, leading heart surgeon at AdventHealth.
Ann Crone Adam, wild applause for your post, I am completely in the exact same place as you. Your post sounds a ... Read more
Ann Crone Adam, wild applause for your post, I am completely in the exact same place as you. Your post sounds almost exactly like something I was going to post late last night and didn't. In fact, when I saw your post I thought I HAD posted it and was so tired I forgot. LOL. Especially the comment that it feels like an exam and if you fail you die. Thank you for stating exactly the way I feel. I meet with my first surgeon in 3 days. I am limited to certain hospitals and doctors because of my insurance plan. Cleveland Clinic denied my insurance. I'm limited to OHIO because I have expensive self-paid Obamacare healthcare.gov marketplace insurance that I had to buy when my retirement insurance was cancelled and other insurers rejected me due to my "pre-existing condition", aka bicuspid aortic valve. I'm finding that getting good information on details about surgeons is next to impossible - there are some websites (surgeonratings.org) that give data but if you dig down, it is based on medicare data that is now 5 years old, for procedures done on patients 65 and over. (still it's something) But some physicians I've seen rated highly here, had "not enough data" to rank them when I looked at surgeonratings.org. A lot of the recommendations here are purely anecdotal based on a report of one patient. Good information, but limited as far as it goes. The only way I've "cheered" myself up is that I have to consider that perhaps some of those that do well with their surgeries and believe that a large part of that was because they did their research so well may in fact be coincidental events. I'm doing the best I can with what I have available to me which is not a whole helluva lot. I'm sure you are doing the best you can do as well. I wish you all the hope and luck that I can send.
Bob Fessler Adam, I went with a local surgeon in Seattle and did great! He had done a couple thousand AVRs and I ... Read more
Bob Fessler Adam, I went with a local surgeon in Seattle and did great! He had done a couple thousand AVRs and I trusted him after interviewing him. Open heart surgery is very common in a lot of hospitals. Research the hospital and ask the surgeon a lot of questions. I interviewed two surgeons. Some people do more. Good luck!
Susan Lynn Adam- I traveled two hours to get the surgeon and procedure I wanted. I got a great result and no s ... Read more
Susan Lynn Adam- I traveled two hours to get the surgeon and procedure I wanted. I got a great result and no sternum cut. High volume and success in performing your desired procedure are paramount The distance may be less convenient, but the outcome very much worth the trip! Best of luck!
Adam Collins Thank you all for your advice and support. I really appreciate it.
Adam Collins Thank you all for your advice and support. I really appreciate it.
At this point, I'm pretty comfortable with staying local, though I reserve the right to change my mind depending on how the consultation with the surgeon goes tomorrow. :-)
Thomas Brusstar There is an article in today's New England Journal of Medicine (dated June 27, 2019) called Procedur ... Read more
Thomas Brusstar There is an article in today's New England Journal of Medicine (dated June 27, 2019) called Procedural Volume and Outcomes for Transcatheter Aortic-Valve Replacement. It compares surgical volume (by hospital and surgeon) with success rate (mortality and major complications). The good news is that the mortality rate is super low for all these procedures. For the lowest-volume quarter of hospitals, it's 3.1%, for the highest-volume it's 2.61%. The success rate is higher for hospitals with higher volumes. Some hospitals do a surgery like once every 2 weeks, others do like 250+ per year. There are 200 individual surgeons who did more than 75 surgeries in a year. The article concludes that more surgeries are clearly better. It's a fair question to ask about surgical volume with the recommended surgeons.