Ben Brooks - Heart Valve Journal

My Journal

Surgical consult scheduled--it's getting real!

Journal posted on August 21, 2020

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!

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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 ... 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 :)

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 ... 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 aortic stenosis). I guess I am lucky to have made it to 65 ... 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 issues until last summer they told me it was moderate stenosis, ... 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 from cardiologist saying "It's Time" to surgery. Hang ... 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.

It's go time.

Journal posted on August 19, 2020

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?

Like | Shannon Gray, Steven Methot likes this

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 ... 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 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 due to the blood thinners I can't wait to get back out ... 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 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 this year, it was suggested that I "talk" to a surgeon ... 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 me. Or I can pass my mobile via this page if that doesn't work. Pat

Ben Brooks Message sent. Thanks!

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 ... 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 feel great!

Stress test

Journal posted on August 18, 2020

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?

Like | Steven Methot, nancy arnold likes this

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 ... 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 all my life but it’s just now starting to feel real and ... 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 expand on it.

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 stress test before I had my first surgery at UW. Every echo ... 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 marginal obtuse 1 artery was 80% blocked; bypassed during ... 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 exercise instead of up.. so, yea, when that cuff kept ... 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 when I first started exercising. Waiting for the cardiologist ... 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 there and got me down right quick.

Steven Methot Duplicate post

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, ... 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.

Sleep apnea and OHS

Journal posted on August 12, 2020

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!

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Donna Letendre Hi,
Yes, you will bring it with you.

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 ... 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!

Ana Brusso 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, and respiratory.

Ben Brooks Thanks all!

Stress testing scheduled--and boy am I stressed!

Journal posted on August 7, 2020

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!

Like | Rose Madura, Dan Baltazor and 1 other likes this

Missy South Good luck with the stress test!🍀

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 ... 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; 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 advice.

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 ... 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.