Mended Hearts Open Forum

Hello.

My name is Brendon and I am 30 years old. I was diagnosed with a Thoracic Aortic Aneurysm back in 2019. I am a Registered Nurse in an Intensive Care Unit. One night while working, I was kicked in the chest by a patient and went to the ER to check out my chest/neck area to make sure there was no damage. It was at that time that they found no damage from the kick, but incidentally found the AA. I was born with a Bicuspid Aortic Valve, always knew about it, but never knew that aneurysms can form later in life from the connective tissue disorder. Needless to say, it was quite a shock. I was terrified but also relieved to have found it because who knows if I ever would have. Since that day, I feel like my life has completely changed. I immediately sought out the best cardiologist I could find, who specializes in both aneurysms and bicuspid aortic valves, at the top heart care hospital in the country. I am currently in a "stable" status, at 4.8 cms since the discovery. I get yearly check ups and am told I wont undergo surgery until i reach 5 cm, per their protocol. Often times, I feel very down and depressed about it; it feels as though my young life was over as I knew it. Finding this out has created such high amounts of anxiety and fear in everything I do. I used to be such an active person. Running, frequent visits to the gym, avid outdoors activities, etc. Since then, I am scared to do anything. Any time I feel any sort of discomfort, I immediately panic and assume I am having a dissection. I have never in my life had panic attacks, but since the discovery, they are weekly. I have gotten a bit better at handling them, but the stress and fear gets to be so much. I have a very supportive girlfriend in my life, but I have decided I never want to have kids, because I dont ever want them to have to go through losing their father. Since the discovery, I just feel my days are numbered; that Im just existing until that inevitable day comes where I feel that terrible, ripping pain, and pray for it to stop, one way or another. I know none of this is healthy. I know how ridiculous what I just said sounds, I tell myself that on a daily basis, but it often doesn't help. I am a fit man, with well controlled blood pressure (average 110/70 BP) but I still cant help but live in fear every day. I see all you folks on here who talk in such positivity, I hope that some day I can do that too. I thought thar after 4 years it would get easier…but I have yet to get there.

Thanks for listening,

------------------------------
Brendon H
------------------------------

Hi Brendon,

I am so sorry you are wrestling with these feelings. You have found a community who certainly understands. Suddenly, your world was rocked and it is hard to think that that "kick in the chest" may have just saved your life. I have always believed that knowledge is power --- and it gives you the opportunity to take action. I was also born with a bicuspid aortic valve - in 1963! Only, I did not know it until I was at a routine checkup at age 40 when the doctor said, "you have a really loud murmur and need to go to a cardiologist." I look back at that day as life-saving because it prompted me to develop a relationship with a cardiologist and afforded me a chance to learn as much as I could about my condition. I developed Aortic Stenosis over the course of the next 12 years. I also developed an aortic aneurysm. Because I understood my condition and trusted my doctor, I did not even get a second opinion when he advised it was time for open heart surgery. I had open heart surgery on Feb 3, 2016 to replace my aortic valve and to repair my aortic aneurysm. I am going to be 60 this year - with a family and grandkids. And, if you can believe this, we later found out my husband has a bicuspid aortic valve and we are watching an aneurysm -- what are the odds?????  I wish to extend an invitation if you would like to connect.  I am an Accredited Visitor (see patients in the hospital) and a very active member of Mended Hearts. This organization may just be the thing you need to feel supported -- it's not an easy journey, but please know, you are not alone!  Blessings, Lea

------------------------------
Lea Parker
------------------------------

Hi Brendon. Sorry to hear that you have been going through this. Shock, fear and anxiety are a common experience for us heart patients. I agree with Lea's comments about knowledge being power, whether that's asking your cardiologist a lot of questions about your condition, recommendations for healthy exercise or prudent limitations you should try to follow. Many of us also find it helpful talking to others who have been through similar experiences and hearing their stories can often help alleviate some anxiety. That's what Mended Hearts is all about! And there are some 'Young Mended Hearts' groups out there for us heart patients who must deal with our issues while also working full time jobs, parenting younger children, being the partners or spouses we need to be.  It can feel overwhelming. But as Lea said, you are not alone! like both of you I was born with a bicuspid valve. I've had 2 open heart surgeries, the more recent when in my mid-40s, and I have a dilated aorta that is stable and being monitored. My cardiologists have recommended limits to strenuous lifting but also encouraged me to stay active and continue doing the outdoor activities that I enjoy and are beneficial for heart health. I personally feel much better when I'm able to get regular exercise. 
I understand the fear. Our YMH group would certainly welcome you if you'd like to join one of our virtual meetings, we've all been there. I believe you'd find it helpful. 
wishing you well. 
Peter

------------------------------
Peter 
------------------------------

Hey Peter,

Thanks so much for reaching out. I would gladly join the virtual meetings, I think it would be a huge help. Can I have a bit more information on when these are?

Thanks!

Brendon

------------------------------
Brendon H
------------------------------

Original Message:
Sent: 03-17-2023 23:06
From: Peter Kilcline
Subject: Thoracic Aortic Aneurysm

Hi Brendon. Sorry to hear that you have been going through this. Shock, fear and anxiety are a common experience for us heart patients. I agree with Lea's comments about knowledge being power, whether that's asking your cardiologist a lot of questions about your condition, recommendations for healthy exercise or prudent limitations you should try to follow. Many of us also find it helpful talking to others who have been through similar experiences and hearing their stories can often help alleviate some anxiety. That's what Mended Hearts is all about! And there are some 'Young Mended Hearts' groups out there for us heart patients who must deal with our issues while also working full time jobs, parenting younger children, being the partners or spouses we need to be.  It can feel overwhelming. But as Lea said, you are not alone! like both of you I was born with a bicuspid valve. I've had 2 open heart surgeries, the more recent when in my mid-40s, and I have a dilated aorta that is stable and being monitored. My cardiologists have recommended limits to strenuous lifting but also encouraged me to stay active and continue doing the outdoor activities that I enjoy and are beneficial for heart health. I personally feel much better when I'm able to get regular exercise. 
I understand the fear. Our YMH group would certainly welcome you if you'd like to join one of our virtual meetings, we've all been there. I believe you'd find it helpful. 
wishing you well. 
Peter

------------------------------
Peter 
------------------------------

Hi Brendon, 

I saw your post and wanted to share my experience with you.

I was diagnosed with a thoracic aortic aneurysm 5 years ago, at the age of 50. My primary health care provider insisted I get checked as I has a sibling that experienced a dissection in his early 40s. I just recently learned a paternal uncle had an aneurysm as well, but he passed away from something totally unrelated, and was medically managed for years. 

I do have a tri-cuspid valve that is normal and healthy, except for the aneurysm now causing a small amount of leakage and a murmur. My aneurysm measures about 4.6 cm, and my doctors will not do surgery until it reaches 5.5 cm. As it has not grown significantly in the last 5 years, the hope is I will not need surgery if I can keep it medically managed. 

I take a statin daily, as well as a blood pressure medication, to keep both blood pressure and cholesterol in check. I am overweight, but am working on losing weight. I don't smoke or drink, and never really have. My blood pressure has always been on the low side until the last 10 years or so. I have always been physically active as I have worked in agriculture most of my adult life, and farm, as well as riding horses. It was not unusual for me to lift 50-100 lbs., and carry it distances daily before my diagnosis. My doctors say a general weight limit of lifting 30 lbs., and my cardiac thoracic surgeon says 50 lb. is occasionally okay, but I try very hard to stick to not lifting anything that makes me strain. My doctors know that I ride horses almost daily, have been a life long equestrian, and they encouraged me to continue. I now also try to walk 5K 5 days per week. 

I will not lie to you- when I was originally diagnosed it messed with my mind for about 2 years. I was sure I was dying every time I felt a little twinge of some sort or back pain. Up until my diagnosis, I hadn't really thought I was going to die. It just was not going to happen. To say this diagnosis was a mind **** is understatement.

Then I started looking at statistics, which did not help. I knew from my brother's dissection that he was incredibly lucky to have lived. The surgeons told my sister-in-law as they wheeled my brother into surgery to say her goodbyes because he had less than an 8% chance of survival. He did in fact survive. 

I took out life flight insurance, as I live rurally and vacation in even more remote areas. I updated my will,l and made my wishes known . I started a play list of music I wanted played at my memorial service. I started writing my obituary.

And then something that happened that totally changed my perspective. I was out riding one day and had a pretty bad wreck. Bad enough to cracked my helmet through in three different places, and leave me unconscious. Luckily, it happened during the COVID shut down and my husband happened to be home, and he saw it all happen. 

Long story short, I was life flighted to the nearest Level 1 trauma center, and I had a concussion, inoperable brain bleed and fractured my sternum in 2 places. I was pretty sure that my 45 plus year riding career was coming to an end. I can remember waiting to be placed in the machine for a CT scan and thinking, "Oh boy, Spiff (my husband) is going to be so excited to sell your horses, and all the expensive things that go with them!" In the end, Spiff knows how happy it makes me to be out on a horse, and left the decision up to me. I am still riding and loving every minute of it! 

BUT, I learned I could die any day of nothing related to my aneurysm! It can happen to any of us at anytime! 

That fall took away all my fear, and made me realize we are all leaving at some point, and in reality, have very little control over when that could be. I continue to do what my doctors tell me to do. I don't get on a horse without a helmet. I always, without fail, wear a seat belt, BUT I am still gonna die some day! 

So now, I make the most of things. I spend time with those I love. I don't watch the clock like I used to. I slow down and see things. I don't have time for those who don't really care about me. I feel the sun on my face. I use my time more wisely. I have my priorities in order.

BUT I don't worry about the future. That would be a fruitless activity, and I don't have time for that! 

Listen to your doctors. Do what they tell you. Get a second opinion. BUT most of all, take control of your life and LIVE! 

If I am going out, and we all are, I will make use of what time I do have, and so should you! 

Best Wishes! 

Cindy 

------------------------------
Cindy Bryan
Farm Owner/ Manager
KCB Stock Farm
Gordonsville TN
------------------------------

Original Message:
Sent: 03-17-2023 23:06
From: Peter Kilcline
Subject: Thoracic Aortic Aneurysm

Hi Brendon. Sorry to hear that you have been going through this. Shock, fear and anxiety are a common experience for us heart patients. I agree with Lea's comments about knowledge being power, whether that's asking your cardiologist a lot of questions about your condition, recommendations for healthy exercise or prudent limitations you should try to follow. Many of us also find it helpful talking to others who have been through similar experiences and hearing their stories can often help alleviate some anxiety. That's what Mended Hearts is all about! And there are some 'Young Mended Hearts' groups out there for us heart patients who must deal with our issues while also working full time jobs, parenting younger children, being the partners or spouses we need to be.  It can feel overwhelming. But as Lea said, you are not alone! like both of you I was born with a bicuspid valve. I've had 2 open heart surgeries, the more recent when in my mid-40s, and I have a dilated aorta that is stable and being monitored. My cardiologists have recommended limits to strenuous lifting but also encouraged me to stay active and continue doing the outdoor activities that I enjoy and are beneficial for heart health. I personally feel much better when I'm able to get regular exercise. 
I understand the fear. Our YMH group would certainly welcome you if you'd like to join one of our virtual meetings, we've all been there. I believe you'd find it helpful. 
wishing you well. 
Peter

------------------------------
Peter 
------------------------------

Hi Brendon,

My name is Steve and I also have a bicuspid aortic valve and a dilated aortic root that was diagnosed at age 38 and I am now 57.  Ironically I am also a registered nurse (hemodialysis) and can relate to what you describe perfectly as I went through the same exact thing after being diagnosed years ago. I am a very active person and the only restriction I have is not lifting more than 50 lbs. My root has grown very slowly over the years from 4.2 to 4.6 cm. My bicuspid aortic valve is functioning very well with some minor regurgitation which has not progressed over the years. Surgery for me will happen at 5.2 cm. There are positive stories of people who had aortic replacement on this forum which helped me tremendously get over the negative thinking about surgery. Like you I sought out the best cardiology care I could find and I am glad I did that. My blood pressure and heart are controlled tightly  with meds to keep BP below 130/80 and heart rate 80 or less at rest. Having confidence in the medical personnel caring for my problem was half the battle for me. The other half was finding positive outcomes with surgery. Working in healthcare, we often dont see the positive outcomes out there enough which causes us to have a more negative view sometimes i'm afraid. I am glad that I know I have the problem instead of finding out when something unexpected happens which is often the case. You sound like you are on the right track with care like I have been, which I think has minimized aorta growth. It took a while for me to "get comfortable" living with the problem and the uncertainty about the future but I got there with time. I think you will get there too. If I can be of any further help feel free to contact me through post or private message.

------------------------------
Steve Florkey
Beavercreek OH
------------------------------

Hey Steve,

Thanks so much for reaching out. Its very nice to hear another nurse going through this as well. You are exactly right when you say that we see so much of the negative outcomes, that its hard to see the positive. Thats probably where most of the anxiety stems from. Its basically caused me to become a Hypochondriac, which is not good. But this group has already helped me so much from hearing all the success stories. My next hurdle to tackle is reducing the anxiety from working out. This past week I decided to get back into the gym, and I was getting worried when my heart rate was 160-180 even with a light jog. I want to keep jogging as I always feel so good after. Hopefully after some more research I will find something that works.

Thanks again!

Brendon

------------------------------
Brendon H
------------------------------

Original Message:
Sent: 03-18-2023 11:40
From: Steve Florkey
Subject: Thoracic Aortic Aneurysm

Hi Brendon,

My name is Steve and I also have a bicuspid aortic valve and a dilated aortic root that was diagnosed at age 38 and I am now 57.  Ironically I am also a registered nurse (hemodialysis) and can relate to what you describe perfectly as I went through the same exact thing after being diagnosed years ago. I am a very active person and the only restriction I have is not lifting more than 50 lbs. My root has grown very slowly over the years from 4.2 to 4.6 cm. My bicuspid aortic valve is functioning very well with some minor regurgitation which has not progressed over the years. Surgery for me will happen at 5.2 cm. There are positive stories of people who had aortic replacement on this forum which helped me tremendously get over the negative thinking about surgery. Like you I sought out the best cardiology care I could find and I am glad I did that. My blood pressure and heart are controlled tightly  with meds to keep BP below 130/80 and heart rate 80 or less at rest. Having confidence in the medical personnel caring for my problem was half the battle for me. The other half was finding positive outcomes with surgery. Working in healthcare, we often dont see the positive outcomes out there enough which causes us to have a more negative view sometimes i'm afraid. I am glad that I know I have the problem instead of finding out when something unexpected happens which is often the case. You sound like you are on the right track with care like I have been, which I think has minimized aorta growth. It took a while for me to "get comfortable" living with the problem and the uncertainty about the future but I got there with time. I think you will get there too. If I can be of any further help feel free to contact me through post or private message.

------------------------------
Steve Florkey
Beavercreek OH
------------------------------

I was also born with a bicuspid valve but didn't know till i was 56 and since i could retire, i did. After 4 years now, i don't get all this anxiety anymore because after my cardiologist said i had a 5.3 Thoracic aortic aneurysm on a echocardiogram. I was refered to a surgeon and then told me, according to your ct scan back in 2015 you already had a 4.8 cm (didn't know that then). So i did another ct scan and it read 4.6cm. I'm looking at it as that it's not growing but i am doing yearly ct scans now and it's still the same. I just watch what i can lift and keep my blood pressure down. 

------------------------------
Errol N
Retired Postal Carrier
Maui, HI
------------------------------

Original Message:
Sent: 03-18-2023 11:40
From: Steve Florkey
Subject: Thoracic Aortic Aneurysm

Hi Brendon,

My name is Steve and I also have a bicuspid aortic valve and a dilated aortic root that was diagnosed at age 38 and I am now 57.  Ironically I am also a registered nurse (hemodialysis) and can relate to what you describe perfectly as I went through the same exact thing after being diagnosed years ago. I am a very active person and the only restriction I have is not lifting more than 50 lbs. My root has grown very slowly over the years from 4.2 to 4.6 cm. My bicuspid aortic valve is functioning very well with some minor regurgitation which has not progressed over the years. Surgery for me will happen at 5.2 cm. There are positive stories of people who had aortic replacement on this forum which helped me tremendously get over the negative thinking about surgery. Like you I sought out the best cardiology care I could find and I am glad I did that. My blood pressure and heart are controlled tightly  with meds to keep BP below 130/80 and heart rate 80 or less at rest. Having confidence in the medical personnel caring for my problem was half the battle for me. The other half was finding positive outcomes with surgery. Working in healthcare, we often dont see the positive outcomes out there enough which causes us to have a more negative view sometimes i'm afraid. I am glad that I know I have the problem instead of finding out when something unexpected happens which is often the case. You sound like you are on the right track with care like I have been, which I think has minimized aorta growth. It took a while for me to "get comfortable" living with the problem and the uncertainty about the future but I got there with time. I think you will get there too. If I can be of any further help feel free to contact me through post or private message.

------------------------------
Steve Florkey
Beavercreek OH
------------------------------

Hi Brendon

I found out that I had a bicuspid aortic valve and ascending aortic aneurysm in 2019 by chance. Never knew about the valve, had a full physical and they found both. I met with a cardiologist and surgeon and they wanted to play the waiting game. My wife sent all of my records to Cleveland Clinic for a second opinion(they happened to be in network with my insurance) and they recommended having surgery. Not necessarily because it was urgent but more because of my age(38) and because I was in good shape and overall very healthy besides this. They was also a candidate for a David Procedure which wasn't even mentioned as an option prior. They were able to "repair" my bicuspid valve instead of replacing it and fixed the aneurysm. My surgeon tells me that there is a good chance that it will last my lifetime and may not ever have to undergo another surgery.

As far as the panic attacks go, I had issues after surgery mentally. Between finding out about the aneurysm and having surgery was about 4 months. mine was 4.8cm when they found it and my doctors told me not to lift anything heavy but aside from that I wasn't at high risk of dissection at that size. For some reason I trusted that and wasn't too bothered by it. I started the panicking after the surgery when every little thing I felt I thought something was wrong. I had to take a small dose of anti depressant for a little while and I think it helped. i'm not a doctor so not suggesting that is what would work for you, it just helped me get over the hump. It took me a while to get past it but it got better. 

Feel free to reach out anytime to chat. It definitely helps talking to people who know what you're going through!

------------------------------
Cole Morrison
772-215-1621
Saint Simons Island, GA
------------------------------

Panic attacks are not in common in my experience after any sort of heart surgery or worrisome diagnosis . I suggest Talk with your doctors ( cardiologist , internist, etc) to also get anti anxiety meds or even some therapy to learn techniques to handle the panic. Sometimes bio feedback is enough. Listen to your body.

Marilyn B. Rosenhouse
Mobile: (214)850-0655


Original Message:
Sent: 3/19/2023 10:11:00 PM
From: Cole Morrison
Subject: RE: Thoracic Aortic Aneurysm

Hi Brendon

I found out that I had a bicuspid aortic valve and ascending aortic aneurysm in 2019 by chance. Never knew about the valve, had a full physical and they found both. I met with a cardiologist and surgeon and they wanted to play the waiting game. My wife sent all of my records to Cleveland Clinic for a second opinion(they happened to be in network with my insurance) and they recommended having surgery. Not necessarily because it was urgent but more because of my age(38) and because I was in good shape and overall very healthy besides this. They was also a candidate for a David Procedure which wasn't even mentioned as an option prior. They were able to "repair" my bicuspid valve instead of replacing it and fixed the aneurysm. My surgeon tells me that there is a good chance that it will last my lifetime and may not ever have to undergo another surgery.

As far as the panic attacks go, I had issues after surgery mentally. Between finding out about the aneurysm and having surgery was about 4 months. mine was 4.8cm when they found it and my doctors told me not to lift anything heavy but aside from that I wasn't at high risk of dissection at that size. For some reason I trusted that and wasn't too bothered by it. I started the panicking after the surgery when every little thing I felt I thought something was wrong. I had to take a small dose of anti depressant for a little while and I think it helped. i'm not a doctor so not suggesting that is what would work for you, it just helped me get over the hump. It took me a while to get past it but it got better. 

Feel free to reach out anytime to chat. It definitely helps talking to people who know what you're going through!

------------------------------
Cole Morrison
772-215-1621
Saint Simons Island, GA
------------------------------

Brendon,

I totally get your fear of activities.  I do cardio 3 days a wk and play competitive volleyball 2 or 3 days a wk.. when I am doing my cardio workout, my pulse gets upwards of the high 140's (i would imagine it would be higher but I have bradycardia where my resting heartrate is about 55).   my cardiologist says that I can continue to do all those things.  but I still worry about it.. (and we all know worrying about something doesnt do a darned thing).   so, to the best of my ability i am trying to enjoy life to it's fullest and until my cardiologist says otherwise, i will continue w/ my normal activities and do my best to not think about it or worry about it.. But that is very hard to do.. I sometimes feel like there is a timebomb in my chest.    for the record i am 57, 6'4" and have ARD of 4.8 and AAD of 3.9.  I will post shortly on my recent health updates.

------------------------------
Scotty Yelroscam
IN
------------------------------

Hey Brendon, Iam 53 years f and found out just 4 months ago I had an AA. I am more active than anyone I know. I workout twice a day 5 to 6 days a week.  I run, bike and regularly lift up to 225lbs depending on the exercise. I am stressed when I think about it which is usually daily. Since I workout so much I am basically worried I am bot going to make it through my workout. I noticed many of the responses say they limit themselves to 40lbs. I was told the same thing but realized there is no way I can do that I live a normal productive life. I figure it's better to enjoy my life even if it's for another day then to be miserable for another few years. The  anxiety is never going to go away so I figured I would just live every day going on as if it is my last. I do make sure that when lifting these heavy weights and doing activities I try not to strain or hold my breath. That in itself is a big task but I have been able to do that for the most part. But limiting the weight that I lift is impossible if I want to be happy. By the way I just don't lift weights I, bowl I play tennis,  fish and a ton of other things. For me lifting weights and heavy weights is what I've been doing for 39 years so unfortunately I just can't stop it even if it means I won't make it past the workout. I'm not a doctor but from what I'm told regular activities you should be fine there's always going to be that chance but you're not supposed to be inactive. There's also not a ton of data on this people usually don't find out until the person is passed away or the actual individual lived from the surgery. Many times they don't know what size the person's aneurysm was before they had a dissection or a rupture. And they don't say how active the person was prior to it. Good luck man I found a person on here that I text message every once in awhile so if you need someone to chat with let me know I'm more than happy to listen to you.

------------------------------
Tariq Edwards
Philadelphia PA
------------------------------