Someone told me on the eve of my surgery that now is not the time to be exceptional. Most people zoom through this surgery without any serious issues. Most ...Read more
Someone told me on the eve of my surgery that now is not the time to be exceptional. Most people zoom through this surgery without any serious issues. Most people are also out of the hospital in five days. Today was my discharge. Quick math shows you I was in for way longer than that. What happened?
I guess I decided to be exceptional. I just can’t help myself.
When they rebooted my heart everything went amazing. Whirred right up. No issues, closed me up, and I was off to ICU.
Except my kidneys did not come back online.
Impossible to know why, for sure. Could be the 284 minutes on the bypass machine. Could be the 26 minutes I was in suspended circulation. Could be the five hours of propofol that kept me nice and asleep during it all. Nobody knows.
Ended up staying in ICU for five days. Kidneys continued to get worse and they almost had to pull the trigger on dialysis. Then on day five, they suddenly turned the corner. A very slow corner. But day over day they started kicking back in and as of today they’re borderline normal. Given the trend, the doctor was more than convinced I’m going to recover and was ready for discharge.
This is why the discharge day kept changing. It’s why I went in expecting to be walking the city streets by Sunday and here we are a week later than that.
I cannot express enough gratitude for all of the surgeons, doctors, nurses and other staff at Mount Sinai Hospital. Gratitude to my employer for giving me the time I needed to prepare to focus on healing for the next two months. My wife who is watching all five kids like the superhero she is. I can’t wait until I can see them all again. Grateful for my amazing mother who met me in NYC and sat with me all day every day even when I was mostly unconscious (and that was most of it). My dad for making space in his life to be alone for two weeks while my mom could be here. My friends who’ve cheered me on and prayed for me, those who’ve shared their personal experiences as well with this.
I absolutely believe your prayers helped carry me through so much of this.
I’m grateful to the various heart surgery support groups online who let me in the door and talked me through the whole journey. You are all doing the Lord’s work out there.
I know this is just the beginning of Ben 2.0. There’s a long recovery road ahead here but I got this. With all of you by my side through all of this, how could I let you down now?
Forty two more years. Let’s go.
Ooohhh Ben, but you made it! Sorry you had to go through all you went through but God was with you an ... Read more
Ooohhh Ben, but you made it! Sorry you had to go through all you went through but God was with you and wanted you to come out of all of it. Yes, you do have great parents, a great wife and five children, wow. Keep getting better and will keep you in my prayers for continued good health and recovery. God bless you
Rose Madura Ben, I'm so glad things are getting better for you. I know how complications you don't expect can thr ... Read more
Rose Madura Ben, I'm so glad things are getting better for you. I know how complications you don't expect can throw a wrench in tour recovery. And I totally understand the love and appreciation you have for your family. I felt the same way. God bless you and please continue to heal. Keep us updated.
Lenore Mitchell Ben - You sound determined and strong, even though the road has been more complicated than expected. ... Read more
Lenore Mitchell Ben - You sound determined and strong, even though the road has been more complicated than expected. One day at a time, that’s the key. So best wishes to you and your family. It does help to know so many of us have traveled this road, and every day is a bit different. Those of us who’ve had OHS (mine was almost 6 yrs ago now), each one of us appreciates life more, so that’s our hard-earned bonus. Best to you!
Barbara Wood The short term glitches will not affect your long term recovery...some of us have a rockier start on ... Read more
Barbara Wood The short term glitches will not affect your long term recovery...some of us have a rockier start on the recovery road than others, that's very normal. You have a great positive attitude...great post & continued good healing:)!
Steven Methot Wow! What a story. There's one other thing that you are exceptional at.
you're a powerful writer.. ... Read more
Steven Methot Wow! What a story. There's one other thing that you are exceptional at.
you're a powerful writer... Here's hoping that they continue to recover and that you have turned the corner.
Marie Myers So glad you are on the mend! That is one big surgery you had...
Susan Lynn Ben - Wow! What a difficult situation! It sounds like you've bounced back and, with any luck, that ... Read more
Susan Lynn Ben - Wow! What a difficult situation! It sounds like you've bounced back and, with any luck, that will be the only detour on the road to your recovery. I'm sure you're anxious to get home. Please keep us posted on your progress! ❤
Rita Savelis You are exceptional Ben! And there are many exceptionals out there. Unexpected side effects and after ... Read more
Rita Savelis You are exceptional Ben! And there are many exceptionals out there. Unexpected side effects and aftereffects happen. Things no one tells you about before OHS. Your body has been through a lot. Thank you for your positive honest post. I was also in ICU for 5 days and in hospital for 7 weeks. And now it's 5 years later. Take care. Take it easy.
Shannon Gray Oh my! Ben, I am so glass you’re on your way to recovering fully, and you will.
Jason Filopei Wow Ben what a story! I am so sorry that there was a detour on your journey to recover but I am so gl ... Read more
Jason Filopei Wow Ben what a story! I am so sorry that there was a detour on your journey to recover but I am so glad you avoided dialysis and are now being discharged ! Take your time with your recovery and know that it may not be tmmrw you are back to 'normal' but you will get there before you know it ! Good luck!
Mike Tirrell Ben - So glad to hear everything worked out. Best wishes on your continued recovery
Civita Fahey Sometimes the road to recovery is not always straight, but as long at it got there, it will make you ... Read more
Civita Fahey Sometimes the road to recovery is not always straight, but as long at it got there, it will make you stronger.. Glad you are on the mend!
Cheryl Mann I echo the others - so sorry you had a bump in the road - I’m so glad you are doing better and - ye ... Read more
Cheryl Mann I echo the others - so sorry you had a bump in the road - I’m so glad you are doing better and - yeah - you can write! :)
All right folks, this is it.
In just under twelve hours, I'll be sitting in a waiting room, probably in a gown and very little else, getting ready to have ...Read more
All right folks, this is it.
In just under twelve hours, I'll be sitting in a waiting room, probably in a gown and very little else, getting ready to have my heart refurbished. Forty two years I've known this was coming. And in all that time it never really bothered me until the last few months. Both physically and emotionally. Physically, I've started getting a bit short of breath when I walk upstairs, and the first hints of chest pain started just today. Emotionally, I panicked when the cardiologist told me it was time. I've had a good run these past forty two years. A wonderful family, imperfect in all the right ways. I've lived on three continents*, visited four**, climbed five or six mountains, visited forty seven states (someday, Nebraska--someday), and had a pretty good career. But the thing that scared me most was the thought of not getting to see my kids grow up. Of not seeing grandkids someday. But in the past few weeks, after deciding on a plan of action and a phenomenal surgical team, I'm at peace. I know that if I do nothing, I won't see next Christmas. No matter how scary that six hour nap and the recovery afterwards look from this side of it, I *know* that on the other side of it I've got about forty two more years ahead of me. Plenty of time to get to Nebraska, Alaska, Maine. Plenty of time to get to Africa, South America, Antarctica. Plenty of time for grandkids, and maybe even some great grandkids.
They're going to be doing some major work tomorrow--Ross procedure with an aneurysm repair. It's going to be a tough recovery. I've been through all of this once before but I was barely two weeks old--I don't remember any of it. And after my six hour nap tomorrow, I've got a tough job ahead of me. A lot of breathing exercises, a lot of walking--but walking is something I'm pretty good at. I was made to do this. Am I scared? Oh yes--but mostly of waking up intubated. My gag reflex is legendary. I hope I'm so drugged up I don't remember any of the ventilator. That's it, that's all I'm worried about. And even that I know I can get through--I have to--because on the other side of all of this is forty two more years with my family.
Surgery starts at about 9 AM Eastern. I probably won't be awake until 5 PM or later. I doubt I'll be in any way capable of posting anything or updating anyone. I'll post something as soon as I'm able to. I'm staying in Mount Sinai Hospital on 5th Avenue for at least five days. They're hoping to discharge me on Monday, God-willing. And then a follow-up a week after that, then I'm headed home to family.
Prayers appreciated, as usual. I'll be back in no time.
* I'm counting Japan as Asia
** And New Zealand as Australia. Look, I landed there for a few hours!
Susan Lynn Ben - You're ready! We'll be here waiting for you! You're going to be just fine! ❤
Boarding my flight to NYC, Ross procedure at Mount Sinai on Wednesday the 11th. Had to say goodbye to family at the airport, but I’ll have my mother meet ...Read more
Boarding my flight to NYC, Ross procedure at Mount Sinai on Wednesday the 11th. Had to say goodbye to family at the airport, but I’ll have my mother meet me at the hospital to help out. Absolutely wild time to have to have such a major surgery. I’d be lying if I said I wasn’t nervous at all, but I’m in good hands and well, if I DON’T have this surgery, I definitely won’t see next Christmas with my kids. So here we go...
Thanks to everyone for all of your support so far. Looking forward to being on the recovery side of this thing and starting a whole new journey...
Susan Lynn Ben - You'll be back on that plane flying home with great adventures ahead and this surgery in the re ... Read more
Susan Lynn Ben - You'll be back on that plane flying home with great adventures ahead and this surgery in the rearview mirror before you know it! Btw, it's unseasonably warm in the east (this week)! Hope you brought clothing options - who knows what weather we'll have by next week!
Remember, we're cheering for you! You've got this! ❤
Steven Methot But... you WILL see and enjoy Christmas with your kids THIS year. Safe travels.
Marie Myers Wishing you a smooth trip thru surgery and recovery. You are in great hands!
Keep a positive mindset Ben, a heart filled with gratitude, and a little humor. Will be thinking of y ... Read more
Keep a positive mindset Ben, a heart filled with gratitude, and a little humor. Will be thinking of you as you lead the way... for my facing surgery in a couple of weeks!
Jim Archer Ben, good luck and have a successful surgery. We are looking forward to hearing from you. You have a ... Read more
Jim Archer Ben, good luck and have a successful surgery. We are looking forward to hearing from you. You have a wonderful attitude, and that makes so much difference.
Shannon Gray Thinking of you and know better days are ahead. Prayers for a smooth surgery and an easeful recovery. ... Read more
Shannon Gray Thinking of you and know better days are ahead. Prayers for a smooth surgery and an easeful recovery.
Mike Tirrell Ben - you have the right attitude. Best wishes for a smooth, successful surgery.
Civita Fahey Best of luck to you.. You will be on the other side soon enough.
Yikes, that's me over there in the Upcoming Surgeries list!
Less than two weeks until the big show. I'm oddly at peace about it all right now. Feeling pretty ...Read more
Yikes, that's me over there in the Upcoming Surgeries list!
Less than two weeks until the big show. I'm oddly at peace about it all right now. Feeling pretty good with my medical team, and the recovery plan. I'm sure my nerves will tick up as I get closer to the date.
If any of you traveled for surgery, what did you take along with you? Aside from a coat and walking shoes (flying to NYC), is there anything you brought along with you that you'd recommend I take as well? Or anything you really *wished* you'd brought?
Thanks in advance.... here we go!
Susan Lynn Ben - You're mentally where you should be - at peace. That's the result of being confident in your ... Read more
Susan Lynn Ben - You're mentally where you should be - at peace. That's the result of being confident in your surgeon, team, and facility. Even in pre-op, you'll be amazingly calm. I was surprised that I was relaxed and ready to go! Then, it's a one-minute nap and it's over! You'll be waking up thinking - that was heart surgery??
I suggest you bring an umbrella, scarf, and gloves to NYC. The weather is changing here in the east. You might also want to bring a pair of comfortable pants for the flight home. You may carry a few extra pounds of fluid after surgery. Safe travels! ❤
Rose Madura Travel pillow. Definitely a travel pillow
Elyse Sherman Hi, Ben! Lots of luck to you, I’m glad you’re at peace with this procedure, I’ve just been told ... Read more
Elyse Sherman Hi, Ben! Lots of luck to you, I’m glad you’re at peace with this procedure, I’ve just been told I need it sooner than later! Are you going to NY Presbyterian?
Rob Sparling Chapstick. Walked in in my pajama bottoms, t-shirt and ball cap. Walked out the same. Otherwise I t ... Read more
Rob Sparling Chapstick. Walked in in my pajama bottoms, t-shirt and ball cap. Walked out the same. Otherwise I took charging cord for devices to read, etc. You spend a lot of time horizontal! For the ride home, you may want a pillow and a cushion to wrap around the seatbelt. We were on the road 5 hours and the backseat was plenty comfy.
Ben Brooks Thanks all! I'm flying back, anyone do that? Trying to prepare for the flight also. Going to start pa ... Read more
Ben Brooks Thanks all! I'm flying back, anyone do that? Trying to prepare for the flight also. Going to start packing this week. Eek!
November 11th I'll be having my heart re-plumbed at Mount Sinai, barring any surprises on my upcoming scans. It's weird how I was panicking about this a couple ...Read more
November 11th I'll be having my heart re-plumbed at Mount Sinai, barring any surprises on my upcoming scans. It's weird how I was panicking about this a couple of months ago. I've found a lot of peace knowing I'm in great surgical hands, and that it's all finally scheduled and on the books. Now to just focus on preparing for the trip, and all of the recovery that comes afterward.
It's also a nice time career-wise, since my job is fairly slow in November/December anyway. I won't have to miss too much!
Bonus: My 18th wedding anniversary is November 12th. Thanks, 2020! Guess we'll have to celebrate early this year! But I'll never be able to forget my heart anniversary!
Steven Methot In Canada that's known as Remembrance Day, it's a bit like your Veteran's Day. As you say, you'll ha ... Read more
Steven Methot In Canada that's known as Remembrance Day, it's a bit like your Veteran's Day. As you say, you'll have something to remember!
Pat Bluemel You chose my birthday for this grand occasion. I feel honored even though this is all about you:-). ... Read more
Pat Bluemel You chose my birthday for this grand occasion. I feel honored even though this is all about you:-).
Marie Myers Confidence in your team is a wonderful thing. You picked a great place to have your surgery, for sure ... Read more
Marie Myers Confidence in your team is a wonderful thing. You picked a great place to have your surgery, for sure.
I had my remote consult with Dr Stelzer today. He agrees I’m a candidate for a Ross procedure. I’m going to have a CT done locally here in Seattle next ...Read more
I had my remote consult with Dr Stelzer today. He agrees I’m a candidate for a Ross procedure. I’m going to have a CT done locally here in Seattle next month and then it’s scheduling time. Looking like a late November/early December date.
Dr. Stelzer was such a great doctor to speak with. One of the few times I’ve felt a doctor actually cared to get to know me and I was more than just another case/procedure.
So before end of year I’ll have my “second” birthday in NYC! It’s getting very real!
Adam Pick Ben, Great to hear you connected with Dr. Stelzer to get some more information and some more answers. ... Read more
Adam Pick Ben, Great to hear you connected with Dr. Stelzer to get some more information and some more answers. He is one of the RP gurus on this planet. You will be in GREAT hands with Dr. Stelzer and the team at Mount Sinai. Hope the Ross works as good for you as it has for me. I'm approaching my 15-year anniversary. If you need anything, please let me know!
Adam Pick Also... For the patients in our community, who are not familiar with the Ross Procedure, here is a vi ... Read more
Adam Pick Also... For the patients in our community, who are not familiar with the Ross Procedure, here is a video with Dr. Stelzer and an HVS member, Peter Woglom, all about that unique approach to aortic valve replacement. https://www.youtube.com/watch?v=YUXt7h0a5z4
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...
Ben Brooks Hi Adam, thanks for reaching out! That’s great about your upcoming fifteen year anniversary! I’ve ... Read more
Ben Brooks Hi Adam, thanks for reaching out! That’s great about your upcoming fifteen year anniversary! I’ve encountered people who are 20+ years out with a Ross who are still ticking along just fine. I’d convinced myself that mechanical was the way to go but after reviewing the latest data and especially hearing some talks from the team at Mount Sinai, I’m looking forward to this little-known procedure. I’d completely written off a few years back. The surgical team at University of Washington recommended it to me—they say it’s starting to be pushed more for us “young” folk who are good candidates. (Is 42 really still young?? I’ll take it!)
Well, yesterday was the surgical consult day. Got me penciled in for mid-November to get this BAV replaced and my aortic aneurysm repaired. Went into the consult ...Read more
Well, yesterday was the surgical consult day. Got me penciled in for mid-November to get this BAV replaced and my aortic aneurysm repaired. Went into the consult after doing a lot of research, settled on going mechanical with an On-X. The surgeon thought that was a great idea, then threw me a curveball: he asked if I'd ever considered the Ross procedure. To be honest, I'd discarded that option pretty early on because of how infrequent it's used. But he got me thinking about it.
He seemed quite confident that I'm a great candidate for it, and he's been doing about one every other month. He always has another surgeon from a local renown children's hospital assisting him, someone who does more of these.
I'm torn, for a few reasons. I love the idea of being free from blood thinners, and potentially free from another operation for decades. However, my surgeon, while an extremely skilled valve specialist, obviously doesn't have a high volume of Ross procedures. I'm not terribly keen to travel for this surgery as I've got a wife and five kids at home.
One minute I'll find a report about how Ross procedures in adults my age are better than mechanical valves for any number of reasons. The next minute I'll find a report about how mechanical valves are superior in every way to a Ross procedure. I see stories of people who have gone 20+ years without complications from either procedure. I see stories of people who've barely gone 2 years without complications from either procedure.
This part of the decision-making process is the worst. I thought I had my mind set, and now I'm almost back to the beginning.
How did you all make your decision on this crazy issue?
During my consultation the surgeon presented the mechanical valve option, then the artificial valve option. The Ross procedure was not presented, most likely due to the fact that I'm 64-65; too old for the Ross' targeted 40 - 50 year old market. For me, mechanical was not an option as I had no desire to br on blood thinners for the rest of my life. That was my opinion going in, and also the expressed opinion of the surgeon - unsolicited. That left the artificial (bovine) option, which I had all but decided upon prior to the meeting; which he also presented as his preferred treatment option.
As a added "bonus" he offered that when the artificial valve needs to be replaced in 12 - 15 years, its physical presence within me doubles as the ideal mounting foundation for a TAVR procedure at that point in time. Currently, TAVR is pretty-much a 1-day, out-patient kind of thing. With technology's continuing advancements, who knows what TAVR, being minimally invasive, will become/be like?
If you indeed are a Ross candidate, you mush be in the 40-50 yr old range. What options will realistically be available to you in 15 years, if a revisit is needed? (Why not consider those options now?)
Finally, consider a 2nd opinion consultation with another, unrelated/unaffiliated surgeon. I doubt there would be any downside to you having more information for the sound decision you need to make/have.
Kind regards.
Kathy Santoro It is difficult getting another suggestion when you have decided what you plan to do. Try looking at ... Read more
Kathy Santoro It is difficult getting another suggestion when you have decided what you plan to do. Try looking at this as another opportunity that just might be to your benefit. I came upon this talk Adam had with Dr. David Adams. It is very informative re repair vs replacement if you haven't seen it yet. I learned a lot. https://www.heart-valve-surgery.com/hospital/mount-sinai-heart-valve-clinic?track=1 Best wishes.
Learn about the Mount Sinai's heart valve surgery clinic led by Dr. David Adams and Dr. Paul Stelzer.
Marie Myers I had a hard enough time deciding whether to get a tissue valve or an Onyx valve. I can imagine the ... Read more
Marie Myers I had a hard enough time deciding whether to get a tissue valve or an Onyx valve. I can imagine the Ross decision is a tough one to make. The founder of this website (Adam) had the Ross Procedure. Perhaps he will send you a note and tell you his thoughts.
Ben Brooks Thanks all. I'm calling to get a second opinion from Mt Sinai in NYC, hope to have that scheduled by ... Read more
Ben Brooks Thanks all. I'm calling to get a second opinion from Mt Sinai in NYC, hope to have that scheduled by tomorrow. What a wild ride this all is!
Adam Collins The same thing happened to me. I'd heard of the Ross Procedure, but dismissed it because I didn't th ... Read more
Adam Collins The same thing happened to me. I'd heard of the Ross Procedure, but dismissed it because I didn't think it was done that much, especially in my area (Oklahoma City). But my surgeon ended up recommending it to me, and that's what I went with. I did get a second opinion, though, at an unaffiliated hospital. My second opinion cardiologist said my surgeon was known to be good at what he did, and so if he recommended a Ross Procedure, he reckoned that's what I should do.
It's been a year since my Ross Procedure now, and I don't have any complaints. No one can really know how things will turn out, but so far, things are going well.
Ben Brooks Records in the mail, they should have them tomorrow. Now the hard part--waiting. My least favorite pa ... Read more
Ben Brooks Records in the mail, they should have them tomorrow. Now the hard part--waiting. My least favorite part of any process!
Chris Calhoun I have On X - done at 53 years old - the blood thinners are not a big deal - so far - and I don't hav ... Read more
Chris Calhoun I have On X - done at 53 years old - the blood thinners are not a big deal - so far - and I don't have to watch the clock thinking about having to do it again - my surgeon asked me point blank - "Do you want to do this again in 15 years or less?" - I said no give me the mechanical
I'm meeting my surgeon next month, September 21st. It's all getting very real very fast. I'm at the point where I'm ready to get this over with and be on the ...Read more
I'm meeting my surgeon next month, September 21st. It's all getting very real very fast. I'm at the point where I'm ready to get this over with and be on the other side, recovering!
Quick question--for those of you who were monitored long term for your bicuspid aortic valves, how long did it take from the cardiologist saying "it's time to meet the surgeon" until you actually met your surgeon? One month feels like a long wait, but I guess if it was more urgent she'd have flagged it as such...
Thanks in advance!
Rose Madura I saw the surgeon 2 weeks after my heart catheterization which was about 1 week after being told it's ... Read more
Rose Madura I saw the surgeon 2 weeks after my heart catheterization which was about 1 week after being told it's time. So 3-4 weeks sounds about right. Be thankful it's been monitored and you don't have to have emergency surgery. I know you are ready to get it done but during this waiting period, try to prepare questions for the surgeon. You'll be glad you did. Best wishes and please keep us posted. And ask any questions here as well...that's why we are here. To offer support.
Ben Brooks Thanks! I’ve got a list of like 30+ questions ready to go! I keep thinking of more to add each day ... Read more
Ben Brooks Thanks! I’ve got a list of like 30+ questions ready to go! I keep thinking of more to add each day :)
Shawn Taylor Like you Ben, mine started with failing my stress test, which was pretty obvious per the tech's react ... Read more
Shawn Taylor Like you Ben, mine started with failing my stress test, which was pretty obvious per the tech's reaction, then the cardiologist called to schedule me to see a surgeon in a couple of weeks and then 3 weeks after that meeting it was surgery time. Not sure there's a normal as it depends on each situation, but I trusted they knew.
Katheryn Applegate Hello Ben,
You’ll meet your surgeon on the day I have my surgery (AVR for bicuspid valve with aorti ... Read more
Katheryn Applegate Hello Ben,
You’ll meet your surgeon on the day I have my surgery (AVR for bicuspid valve with aortic stenosis). I guess I am lucky to have made it to 65 before needing surgery. I’ve been on the roller coaster you are on since last December. It will be good for both of us to get it behind us! Best wishes for your surgeon appt. Keep us posted!
Ben Brooks Hi Katheryn—praying all goes well for you!!
Maureen Zier Hi Im 54 also have bicuspid Aortic valve stenosis. About 5 years ago I was told . Did not have any i ... Read more
Maureen Zier Hi Im 54 also have bicuspid Aortic valve stenosis. About 5 years ago I was told . Did not have any issues until last summer they told me it was moderate stenosis, we have been watching and now the last echo in May showed it is now severe. Surgery set for the end of Sept.
Dan Baltazor I was monitored for a long time and it was about a week before meeting my surgeon. It was 2 months ... Read more
Dan Baltazor I was monitored for a long time and it was about a week before meeting my surgeon. It was 2 months from cardiologist saying "It's Time" to surgery. Hang in there. It consumes all of you right now and it feels like things should be moving faster and the wait feels long and drawn out. Try and take it one day at a time, one appointment at a time. You will feel much better after meeting with your surgeon. Hang in there. It's a tough rollercoaster you're on.
Meeting with the surgeon next week. Oddly not overly anxious anymore. I'm sure it'll come back at some point. But having an answer after that stress test took ...Read more
Meeting with the surgeon next week. Oddly not overly anxious anymore. I'm sure it'll come back at some point. But having an answer after that stress test took a lot of my anxiety away.
Cardiologist said she suspects I'll have surgery scheduled in the next 2-3 months, tops. The surgeon will make the final call there. He's a younger guy, but has a good record and I think others here have had him do their surgeries. Will keep everyone updated as I go along.
I'm nervous, but almost in a giddy "about ready to have a better heart after 42 years of this busted one" kind of way. Is that weird?
Cathy Moseley I had AVR 27 years ago at age 43. It totally changed my life for the better. I was scared but hoped I ... Read more
Cathy Moseley I had AVR 27 years ago at age 43. It totally changed my life for the better. I was scared but hoped I'd be ok but had no clue that I'd be able to do things I had never done in my life. I exercise daily with spin, weights, walk 4-5 miles, etc. Good luck!
Pat Bluemel When is your appointment next week? I'm seeing Dr. Burke for my two week check on the 24th:-). Happy ... Read more
Pat Bluemel When is your appointment next week? I'm seeing Dr. Burke for my two week check on the 24th:-). Happy to talk to you this week with any questions and help you ponder topics to chat w/ him about.
Ben Brooks Cathy - Thank you for sharing. I love hiking through national parks, and while I've got to be careful ... Read more
Ben Brooks Cathy - Thank you for sharing. I love hiking through national parks, and while I've got to be careful due to the blood thinners I can't wait to get back out there and at it next year.
Pat - I'd love to chat with you about your experience with him. He's the one they're trying to set me up with, and I can't find much info about him out there. Feel free to ping me on FB if that's the easiest way. Happy to send you my number or something as well. Thanks!
Shannon Gray I remember a similar feeling once I knew this needed to be done. I spent my time making sure we had a ... Read more
Shannon Gray I remember a similar feeling once I knew this needed to be done. I spent my time making sure we had a plan for my two children and prepping for surgery. We’re with you each step!
Mike Tirrell Ben - I totally know what you mean about wanting to get it done. In my yearly cardiology appointment ... Read more
Mike Tirrell Ben - I totally know what you mean about wanting to get it done. In my yearly cardiology appointment this year, it was suggested that I "talk" to a surgeon about timing as I had passed into the severe range but no symptoms as of yet. I thought I would be more nervous but was actually looking forward to the surgical consult as I would be getting more info and closer to getting this whole ordeal over with. The surgeon that I spoke with was great and that made me feel pretty good about everything. I am still nervous, don't get me wrong but feeling a little more at ease. I have another echo in 3 months and will likely have one every 3-6 months until surgery is performed. Good Luck!
Pat Bluemel Hey Ben, there are several Ben Brooks on FB and I can't tell which one is you. Feel free to message m ... Read more
Pat Bluemel Hey Ben, there are several Ben Brooks on FB and I can't tell which one is you. Feel free to message me. Or I can pass my mobile via this page if that doesn't work. Pat
Steven Methot I don't think so. I have seen it in family and friends, first the fact that there's a diagnosis - a ... Read more
Steven Methot I don't think so. I have seen it in family and friends, first the fact that there's a diagnosis - a name to what we're enduring, then the certainty that something can be done and that there's a timeline. However scary the operation is, knowing that there are answers and some certainty is a relief.
Rose Madura Not odd at all. I had a "bad heart" all my life. At 59, I had my surgery and now 3 years later I f ... Read more
Rose Madura Not odd at all. I had a "bad heart" all my life. At 59, I had my surgery and now 3 years later I feel great!
Welp I’m fairly certain I failed that stress test today. Felt great the whole time, but the nurse was very concerned about my ekg at times, asked me to confirm ...Read more
Welp I’m fairly certain I failed that stress test today. Felt great the whole time, but the nurse was very concerned about my ekg at times, asked me to confirm I’m not on any heart medications, and asked me while I was cooling off if I really didn’t have any symptoms (I really didn’t).
She then went to try and find my cardiologist while I was preparing to leave, but she was with a patient and said she’d get back to me.
So... it’s probably getting close to “go” time on this aortic valve replacement... will hear more from cardiology in the next 24-48 hours.
The waiting really is the worst, isn't it?
Pat Bluemel This is how my stress went down at Swedish so many years ago. Don't let your mind wander too much. Ke ... Read more
Pat Bluemel This is how my stress went down at Swedish so many years ago. Don't let your mind wander too much. Keep us updated. I'm happy to talk you through next steps when it comes to Seattle stuff for sure. Get some rest. That's the most difficult test you have to endure with all this, so that hurdle is done.
Ben Brooks Thanks! Was that the test before your first replacement? I’ve known I needed this sucker replaced a ... Read more
Ben Brooks Thanks! Was that the test before your first replacement? I’ve known I needed this sucker replaced all my life but it’s just now starting to feel real and it’s scary stuff!
Also, did you have both surgeries at UW or just the most recent? Would love to talk about how the whole process went when you’re up for it.
Hope recovery is treating you well!
Steven Methot It is, it always is. And what's worse is when they stare at the machine and go "hmmm" but don't expa ... Read more
Steven Methot It is, it always is. And what's worse is when they stare at the machine and go "hmmm" but don't expand on it.
nancy arnold At one point during my echo, the tech changed views and I thought I heard him mutter, "What the ?!" T ... Read more
nancy arnold At one point during my echo, the tech changed views and I thought I heard him mutter, "What the ?!" Turns out I have severe aortic stenosis. And yes, the waiting IS the worst.
Pat Bluemel Hey Ben, yah that's what kicked off the process for my first. But it was a good 10 years after that s ... Read more
Pat Bluemel Hey Ben, yah that's what kicked off the process for my first. But it was a good 10 years after that stress test before I had my first surgery at UW. Every echo person reacts differently to what they are seeing so again, don't worry too much until you talk to your cardio. I did have both surgeries at UW, but with different surgeons. Happy to talk through once you hear from your cardio and get a take on your current situation for sure. Until then, try not to worry. Easier said than done I know.
Herb Greenberg Just before surgery I aced by stress test, but still, when they did the angiogram, they found that my ... Read more
Herb Greenberg Just before surgery I aced by stress test, but still, when they did the angiogram, they found that my marginal obtuse 1 artery was 80% blocked; bypassed during the bio-Bentall procedure I had, taking an add'l 7 minutes to the actual HL machine part of the surgery. Turns out when it comes to blockage the stress test is about 70-80% correct.
Civita Fahey I did fine during my stress too, but they found that my blood pressure would actually go down during ... Read more
Civita Fahey I did fine during my stress too, but they found that my blood pressure would actually go down during exercise instead of up.. so, yea, when that cuff kept going up and down, I knew there was an issue. I felt fine, and no symptoms during the test.
Ben Brooks Hi Civita, that's what happened to me too. It didn't keep going down, but it did drop a little bit wh ... Read more
Ben Brooks Hi Civita, that's what happened to me too. It didn't keep going down, but it did drop a little bit when I first started exercising. Waiting for the cardiologist to call back is the worst part of all of this!
Steven Methot Ben, my last one was fine, the BP didn't move... until it did. Fast and up. The cardiologist was th ... Read more
Steven Methot Ben, my last one was fine, the BP didn't move... until it did. Fast and up. The cardiologist was there and got me down right quick.
Civita Fahey yes, Ben it is. basically he told me that it was time to do the surgery, because that was a sign they ... Read more
Civita Fahey yes, Ben it is. basically he told me that it was time to do the surgery, because that was a sign they didn't like. No rush, but within a six month period. Hopefully, you will have more time, but, if not, you will do just fine.. We all have here on this site.. let me know if you have any questions.
Wondering if anyone’s had OHS who uses a CPAP machine. Would I be able to bring that with me to the hospital? Could I even wear it with all the rest of the ...Read more
Wondering if anyone’s had OHS who uses a CPAP machine. Would I be able to bring that with me to the hospital? Could I even wear it with all the rest of the stuff going on? Curious if anyone’s faced this issue before.
No scheduled surgery date yet but every month it inches closer. Wanting to prepare as heat as I can! Thanks!
Lorraine Mobley I had OHS and brought my cpap. While you have a breathing tube in you won't use it, but you will afte ... Read more
Lorraine Mobley I had OHS and brought my cpap. While you have a breathing tube in you won't use it, but you will after it is pulled. I used their CPAP as well bc it had oxygen so it was more like a bi-pap. Added benefit it created moisture, more than my CPAP and when they are withholding water I was actually licking the water from the mask!!!! Yes, that is how desperate for water you will be, just a heads up!
Hi Ben, just like Lorraine, I used theirs while in the hospital after breathing tubes were removed. B ... Read more
Hi Ben, just like Lorraine, I used theirs while in the hospital after breathing tubes were removed. Be well and God bless you
Frank Giovanniello The hospital set me up with a Bi Pap. Just make sure you let the Anesthesiologist know in advance, ... Read more
Frank Giovanniello The hospital set me up with a Bi Pap. Just make sure you let the Anesthesiologist know in advance, and respiratory.
Stress test scheduled for the 18th of August, though I can absolutely tell you that I'm stressed out! Not in the way they mean, though :)
My bicuspid aortic ...Read more
Stress test scheduled for the 18th of August, though I can absolutely tell you that I'm stressed out! Not in the way they mean, though :)
My bicuspid aortic valve finally crossed the threshold into severe stenosis about a year or two ago (after being moderate forever) but I haven't had any symptoms. Aortic aneurysm also started enlarging for the first time in years. My cardiologist ordered the stress test, to see if I really am asymptomatic. I'm getting to a point where I just want to get it over with--as scary as the thought of OHS is, I see all these great recovery stories here and I know objectively it's a very safe and successful surgery nowadays!
I'm going to take my cardiologist's recommendations and do as she advises. She's been great so far, and seems to be fairly well-respected in her field. What's funny about the asymptomatic thing is that now I know she's concerned, I think every tiny thing may be a symptom!
I guess it's just hard to be only 42 and staring this surgery in the face, right in the middle of the best years of my life with five kids, a strong career... so much uncertainty and fear about this, even though, again, I know it'll all be okay.
Thanks to all of you for sharing your stories along the journey--it's really helped me out a lot. I'll keep you posted as things progress!
Marie Myers Totally understand the stress of that information. Just take one day at a time, one test at a time. A ... Read more
Marie Myers Totally understand the stress of that information. Just take one day at a time, one test at a time. At some point, you will be ready for surgery. Know that these surgeries are done every day, and that they are “routine” for the surgeons and OR staff. Hair raising for us, routine for them...Keep us posted on your journey!
Alex Sigalov Hi Ben, i made to 39yr, by the end was very symptomatic so could not wait to have surgery good luck; ... Read more
Alex Sigalov Hi Ben, i made to 39yr, by the end was very symptomatic so could not wait to have surgery good luck; and do ur research on valve options
Dan Baltazor I completely understand all that you say. I was 44 and you can do this!! Everyone here has great adv ... Read more
Dan Baltazor I completely understand all that you say. I was 44 and you can do this!! Everyone here has great advice.
Shannon Gray I can relate and understand... I was 42 at the time of my surgery, with my youngest just turning 2. I ... Read more
Shannon Gray I can relate and understand... I was 42 at the time of my surgery, with my youngest just turning 2. It was incredibly hard... being away from my kids and then limited as to what I could do with them during recovery . I will always be on a 25 lb weight lifting restriction since my disorder is closely related to connective tissue disorder... to know I could never lift my youngest was heartbreaking. However, you can do this! You’ve got age in your favor as you face surgery, and knowing your family needs you helps motivate you to get through. Sending you good wishes as you face this.
you're a powerful writer.. ... Read more
you're a powerful writer... Here's hoping that they continue to recover and that you have turned the corner.