Just diagnosed with Thoracic Aortic Aneuryms ..scared!

Hi Annc999,

This is Eric, Jennifer's husband. Thank you for taking the time to respond and provide your insight from your own experiences. I decided to join this forum as she has received quite a bit of support from people on this site and I am looking now for this same level of support for my issue.

This is new to us and it's scary to say the least. I am starting to accept it more each day and trying to not let it consume me. There are days that I am fine and carrying on with my business and being myself, and there are days I'm concerned about blowing my nose too hard, sneezing, coughing, or wondering at what moment something will go down.

I am doing my best to keep a positive attitude and am following up with my cardiologist to a fault. I have stopped any weightlifting and quit cigar smoking (had 1 literally every 3-5 months). I'm working on trying to get cardio in every day to drop excess weight, eating cleaner each day and drinking 1/2 to 3/4 gallon of water daily. I have been scuba diving for over 3 years (have dived close to 75 dives since diagnosed 4 years ago) and in 4 weeks going to Cozumel and plan on having the dive boat crew hand me my set up gear in the water and take it from me before I climb back onboard, to minimize any strain on my heart with lifting.

I received a 2nd opinion 2 years ago in which the cardiologist said they could not find the aneurysm after running a gammet of tests. I continued getting to the gym when I could, and when I got back into lifting I was hoisting a crazy amount of weight. I had 3 episodes in which I was gasping for air and going into a panic, which is what made me run back to my original cardiologist. The episodes and gasping for air were not your usual brisk walk/biking/swimming for 30 minutes and heavy breathing;

Episode 1 while excessive dancing at friends wedding

Episode 2 while running from a queen hornet and swinging wildly on a camping hike

Episode 3 (recent) where i climbed 8 flights of stairs at work

I'd like to think these episodes are due to my being overweight (solid from years of bodybuilding but definitely have fat to lose), and NOT further issues with my heart or lungs. I am seeing a pulmonologist next.

An angel must be watching and protecting me, especially after reading horror stories of aortic dissections/bursts after or during heavy lifting. Despite the episodes and stress I put on from lifting and occasional cigars, my aneurysm has not changed since 4 years ago, and my heart muscles and breathing responsed normally during the stress test.

Thank you for your support and insight. One day at a time, with caution and care.

Eric

Hi, Eric. Sounds to me like you're doing great under the circumstances! 😊 Keep up the good work and hang in there.

My growth rate is .1 per year so far, so I am taking charge of my life and bucket list best I can.

Something that helps me is being brutally honest with my family and friends. It is serious and no point in sugar coating it. I hate to sound morbid but I am planning my own funeral and it puts my mind at ease. I don't want to go into surgery without having taken care of things and want to make it easier on them if something happens and I don't make it.

We all deal in our own ways. Praying for a good outcome for all of us with this condition.

We WILL survive!

I replied to your wife's post. As I told her my aneurysm was discovered in May 2007 and my surgery was in May 2016. I just celebrated 1 yr anniversary of a new heart beat.! I'm not here to scare anyone, I hope my story can offer comfort so I prefer to answer questions and not talk about things that may not be important to you or your wife but ask me anything and I will share my experience.

Gigi2007 thank you so much for your support! This community is fantastic, my wife has been on here for some time discussing other issues and she turned me onto this site. 

At some point there will be change, hopefully more positive than negative, but my wife and I have to pray for the best but be ready for the worst. This is the mindset we have at work (IT department at a large NY hospital) and it applies IMO to most or all facets of life. 

Congratulations on a successful surgery and I hope all continues to go well for you and everyone with this condition

 

Hi RG 1972,

This is Eric, Jennifer's husband. Thank you for taking the time to respond and provide your insight from your own experiences. I decided to join this forum as she has received quite a bit of support from people on this site and I am looking now for this same level of support for my issue.

I am working on keeping my diet as clean as possible, in order to drop weight as well as prevent any issues from further complicating my aneurysm. Easier said than done as over the last 18 years I've slacked off altogether from my bodybuilding lifestyle and have been fighting to get back into it for years.

With that said, I am working on consuming better choices of carbs (oatmeal for breakfast, protein shake with almond milk and banana (or mixed berries) for brunch, Subway grilled chicken sandwich for late lunch (I know not the greatest choice but better than other options (employee food at my hospital is loaded with sodium)), and wife cooks a protein (chicken, turkey burgers, occasional steak, pork chops (not the best choice) with carb (plain pasta with homemade sauce (little salt) or white rice and a vegetable. Snack on fruit (tangerine and apple), trying to drink 1/2 to 3/4 gallon of water daily.

Occasional mess ups with snacking, sometimes get takeout (Chinese, pizza/pasta, Portuguese or Peruvian food).

I know what I need to do and I have to clean up my diet more. Tough when my only vice my whole life is the enjoyment of eating different foods but nonetheless need to work on this, now especially for my heart's sake as well as my family.

Despite all this, never had high blood pressure, not diabetic and cholesterol is a hairline over normal and taking omega 3 pills with St Joseph's baby aspirin to keep things at bay.

Trying to incorporate cardio daily or close to. Working on this one day at a time, slow and steady.

Hi Eric, right on you are lucky to have a heads up to the whole situation and it sounds like you are doing good with your diet.  Like I said before I always had low BP and my AAA came out of nowhere with no warnings.

One thing I was horrible at prior to my AAA was that I never ate fruit, now I eat up to four servings a day, and since then my desire to snack bad foods has gone away (knock on wood).

When you do go for surgery, you are going to have an amazing recovery.  I feel like I have done great, I'm not back at work yet after four months now, but I have been blessed to just take it easy and not have to over do anything.

Not having to be back to work for 4 months sounds like a blessing, although having heart surgery is not the reason why I want to be out that long, I was hoping it could be from a botched tonsilectomy instead LOL. I'm trying to keep my levity and positive outlook, my poor wife is worried sick God bless her. 

It feels weird going to the gym and watching everyone else working out with weights/bodybuilding. It makes me feel older than I am, I need to get involved in something that I can expel my energy. 

Was thinking TaeKwonDo (once I drop a good percentage of this bodyfat). Is that considered high intensity exertion that I may wind up raising my bp? Besides doing forms, practicing board breaking, there is warm ups which is basic stretching, some punching and kicking drills, self defense practice where you the attacker fall to the floor when the defender does the self defense move on you. Years ago when I was a teen it was medium to full contact sparring, now it's more like rythymic dancing with gear on - guess there were lawsuits and students dropping out. 

For me, I have to avoid anything that would enable an accidental collision to the chest, I understand if you go in for a planned operation as opposed to emergancy situation, the stress and recovery time is drastically different.

I'm gunna miss playing basketball and I will have to learn how to take it easy when I'm mountain biking.

Hi Derrick, you have a fantastic outlook and God bless your will and determination, with my hopes your AAA continues to remain at 3.6. My entire life I have had to balance excessive worry vs. having a similar attitude as yours, always a battle between the two. This is "new" to me (new in the sense that it was confirmed I have this 4.5 AAA and I am now taking it MUCH more seriously), so I am learning to work with it. I myself have stopped lifting weights at the gym altogether, if I do go back to it, I will keep it at light weights high reps for shaping. I've done enough years of mass building that now I am solely focused on cardio and dropping excess bodyfat and minimizing muscle atrophy as much as possible. I'd love to go back to TaeKwonDo (my origins from my teens), however I first want to drop some excess weight so I can perform somewhat like I used to and feel better. 

VERY interesting you mentioned Macchu Picchu, as I am originally from Peru (parents came to the US when I was 2 so I grew up American) and visited MP approx 3 or 4 years ago. I didn't do the hike, I took the bus and train up the mountain and hiked the rest. When I went from Lima airport and landed in Cuzco, I got hit hard with altitude sickness but it went away the next day. I'd love to go to Brazil and many other countries as I love to travel, as well as my wife and kids. 

For now, going to Cozumel for a week of diving coming up late June to early July. Simply going to tell the dive boat to hand me my gear in the water and take it from me before I climb back onboard. 

I am looking to take it easy but continue living my life with the hopes I will be around for a long time for us to see our kids grow up and get married, One day at a time, and I thank God for each day. 

Thats one thing we have in commen, Martial arts, I used to run a judo club and I have tried to keep  myself reasonbly fit, but you know how things go, work, overtime, call outs, it all catches up with you, eating at the wrong times, lost sleep and of course, you end up gaining a few pounds over the top, retirement dont help matters either, but it does give more time for exercise and thats were walking comes in, its simple, just one step at a time

I still lift in the gym, but its reps not so much the weight these days, Ialso do the boat race on the rowing machine (6000 meters) my time is nothing like the Oxford or Camebridg rowers, but it gets the blood flowing and the heart rate up and gives the lungs a work out

I'm lucky I have sen my kids grow up, I have 3 grandkids, and they are doing well, they follow me on the internet with my travelling, (the internet has made the world a smaller place)

Yup, just take each day as it comes

You say you are going diving, just keep an eye on the depth you are diving at, water pressure can do strange things to a body

Yup I went down with the altitude sickness, I couldnt even walk up a flight of stairs without taking a break, but you dont have a choice, just work through it (cocoa leaves help as well)

The reason I didnt take the bus and train was I was told I was too old to walk the trail

If you do go to Brazil, be careful, I was shot at Rio, then a few days later got mugged, but I survivedI know the mugger sported a black eye and a fat lip and I still had my camera  and he lost his flip flops

As per my triple A, I dont know how to reduce the size, I just have to go for a check up every year for a scan, , I just have to hope it doesnt grow, its out of my control (unless anyone can tell me differently)

Of course you are going to be around for a long time, just aim for triple figures and I know that at the same time every year, you are going to have a birthday (unless of course you were born in a leap year and you are just going to stay young)

Get up every morning and open your eyes, YAY, you have survived another night, now all you gotta do is get through the day and every day above the  flowers is a good day

gigi2007,

I would love to hear your journey. I am in my 50s and mine is slow growing. How did you mentally prepare for surgery? I know I will be a wreck when the time comes. How was recovery? How long? Is your life normal now? Back to work?

I worry about risks of surgery and survival from that and recovery.

Thanks for sharing. It really helps.

annc999

Annc999, excellent questions and I'd like to know myself. I'm curious what causes the slow growth. Is it simply periodic rises in blood pressure at any given moment or circumstance? This is why we are told to not weight lift, push or move furniture or shovel snow? 

Will going on a blood thinner like Warfarin or a beta blocker like Norvasc help? 

I can't begin to imagine dealing with this but my wife and I are facing this head on. I am grateful I work for a fantastic hospital in New York, I am hoping that if anything ever were to happen, I'd either be home or here at work!!

I'm going to post a "rant" of questions and feelings I have. I'm sure many/all of us can relate, feel free to add or comment on anything as needed

My aneurysm was thoracic not abdominal just wanted to make sure I clarify. It was discovered during testing preparing for another surgery. It didn't grow until Jan/Feb 2016 but fairly rapidly. I was caught off guard because I wasn't expecting growth. Anyway, suddenly I was told it had significant difference growth and it time to prepare for surgery! I was terrified but the alternative was just as frightening. Approximately a couple of years prior a friend went out for a daily jog, collapsed and died from an undiagnosed aneurysm. A month prior, my nephew was on a treadmill in the gym, started to feel sick, went home, next day to ER and diagnosed with a ruptured aneurysm, had emergency surgery and survived. My surgery was scheduled several days prior and that's when the real anxiety set in but I had a great support group (my family), and a grpup doctors that answered all my questions even if I didn't like the answers. I can not lie, the surgery was the worst pain I've ever experienced. The road to recovery was very painful but it was progressively better each week. My chest still hurts, incision very visible and still a few problems. However, I have progressed to a (new normal)

I am back to normal activities with a glitch or

I'm back to normal activities with a glitch or two. I've started seeing a neurologist for a problem with my arms and dizziness.

Thank you for your openness and honesty. I know it must be a difficult surgery and recovery. I predict I'll need it in 5 years or so. I hope your glitches get resolved.

How is your energy level? Were you in good shape pre-surgery? Did you have to do anything to prepare - diet or exercise, anxiety meds?

Gigi2007, scary reading but to the point and not pulling punches. Thank you for your honesty. I am doing my best to avoid doing anything to raise my blood pressure, whether that be physically or psychologically (dealing with my team members at work LOL). The rest is in God's hands, I just pray that it will not grow much and if it does, will grow slowwww...............

I am a veteran, I was a exercise fanatic, also ran 3 miles a day prior to the aneurysm being found. I didn't have any symptoms. My cardiologist told me to stop the rigorous exercising and running. Also said no heavy lifting. He said anything that elevates the blood pressure could speed the growth. I was never placed on meds. I've always had excellent blood pressure. I'm a fairly good eater. Never had any particularly bad eating habits. Stopping the running and exercising made me a little more conscious about what I ate. I gained 10-12 lbs over the 9yrs.. My energy level or should I say desire to do things has returned but the ability does quite match up.. My legs ache when I first start (exercise type) walking but I push through it and it goes away. I get a little winded as well but I keep going and it passes as well. I plan to enroll in Zumba classes soon. I'll see how that goes. Running is out of the question. I'm not on any meds, only occasional over the counter pain reliever when the pain gets a little too annoying. I think that comes along with increased activity levels. My glitches are my arms, leg & dizziness.

My arms (shoulder to fingertips) without warning, suddenly feel weak, numb and achy. It totally disrupts whatever I'm doing at the time. Ive tried heat, massages, ice, pain meds but nothing works. At least twice since my surgery I was walking and my leg stopped moving as normal. It felt heavy and I had to force the movement almost as if it was paralyzed. Finally, I suffer from sudden dizziness even when driving. It was diagnosed as Vertigo but now seeing a neurologist and he does agree. He said all my issues are from the surgery and he's trying to determine the reason and a fix if there is one. I've been told my chest pain is still muscles that have been slow to heal or a cracked rib (it can happen during) or the wires on the inside. Either way, it can't be fixed without opening my chest again so NO THANK YOU to that. The saga continues..

Ahh, the trusted teammates lol! You seem to be on top of your health. We are all individuals, so our experiences will be different but if we make an effort to arm ourselves with knowledge and use it to suit our personal needs, we'll be fine. It appears that you are doing that. From my understanding, they usually grow slowly and sometimes not at all. If you ever get to the point of surgery, just be sure to ask a lot of questions about surgical options, the surgeons, expected recovery time, meds, limitations and anything you can think of and follow it but more importantly, listen to your body. Continue to seek info, medically things change. Remember: knowing is half the battle! Definitely, keep trusting God, He still has plans for your life so LIVE!! LOL!!

Can you tell me where you had your surgery done? I've got a 4.8 centimeter aorta anuersym. One doctor says monitor and one says have open heart surgery today. I'm so scared. Just trying to find a great doctor and great hospital.

Gloria.... 

Where are you located?

Gloria, I am still waiting for a date for surgery. I remember how scared I was when I first found out. I have an aortic root aneurysm that is 5.7cm, which was diagnosed in March of this year. I am still waiting for the cardiac surgeon to schedule my surgery.

I am from Canada, where are you?

I just want you to know that the waiting is hard, and scary...but you are not alone. We all have the fear of the unknown, and the fear of not being in control.

Im in STL MO btw, nice to meet you all.

Hi Jennifer ! I was just diagnosed with thoracic aortic aneurysm. 😞 It's at 4.1 cm . My heart dr said if it reaches close to five I will need surgery ! I am 43 years old and single mom of my son who is 11 . I'm so afraid as I've heard so many hotties stories that surgery Is very dangerous and many do not make it ! I'm on lopresser and lotrel for high blood pressure and I currently have gallstones , a kidney stone and infection in my stomache 😢 I'm also taking antibiotics ! I am in constantly obsessing and praying that god will not take me now as I afraid to leave my son alone ! Is it true there is a high rTe that do not make the surgery ? Your story has given me hope ! Is there anything else I can do for my aneurysm not to grow rapidly or stay the same ? And just wondering why my heart doctor says he will monitor it yearly ? Shouldn't they monitor it sooner Being it was just discovered ? Thsnks and blessings to you !

Sorry I meant horrer stories typo

I used to live in St.Louis. Nice to meet you.

Hoping we all have good outcomes and live long!

Hi, Carmela. Welcome!

My case is similar to yours. Diagnosed a few years ago at 3.9, now 4.1. Thankful it's slow growing but also don't want to be too old when they do surgery. I'm in my 50's. BP and cholesterol well managed for years with meds. Lost 50 lbs before I knew about this and have kept it off for many years, thank God!

If yours remains stable, that is good!

You must try to focus on taking care of yourself and not letting the anxiety overcome you. How do I know? Because for months I let it consume me and it does no good. My worry and anxiety was affecting my family and that's not fair to them. I will do everything I can to win in this situation. ??

Do research, focus on the positive stories and remember that medical technology is always advancing.

Someone on this forum gave me a welcome "slap in the face" by reminding me IT'S NOT CANCER and I need to LIVE MY LIFE and enjoy it. He's absolutely right.

Prayers are with you. 🙏🏻

Hi Carmela, I'm Gigi not Jennifer but I think your post was meant for me.. I have not heard a lot of horror stories involving "Thoracic Aortic Aneurysm" repair surgery. Your fear is not abnormal. I was terrified and confused when my doctor initially told me. Over time, my fears diminished to a more controllable level. Yours at 4.1cm is still too small to repair. Mine was 4.6 when discovered 2007. It monitored every 6 months. I did not (still don't) have other medical issues..it was found during prep testing for a hysterectomy. My aneurysm did not began to grow until approx Jan/Feb 2016. My surgery was May 2016 at 5.8cm.. To relinquish some of your fear, empower yourself with as much info as possible. Ask your dr to explain anything you don't understand. Ask to look at images of your aneurysm, compare to normal aortic images. You probably have years before surgery may be necessary. My doctors told me to stop running and dance aerobics (cardio) or lifting/moving heavy things. Just remember that anything that makes your heart beat faster, makes the blood pump faster thus the "potential" for growth. I was always aware of my aneurysm but I got past stressing about it. Stress is another influence on growth so limit it as possible (I know right). I tweaked my diet a little since my activity level had to change. My true anxiety surfaced when it became surgery time. I was surrounded by a awesome surgical team, a knowledgeable staff of nurses (with great beside manners) and my very dedicated & supportive daughter and mom. My husband was a basket case lol! Knowing is half the battle. Control the things you can, prayer and trust will get you through the rest! Not sure I answered all of your questions but if you ask, I will do my best to share my experience!

You post is phenomenal. I am on the pre-surgery side of this, and have my surgical consult on August 1st. I was diagnosed just a week ago today with a 5cm root aneurysm, and a bicuspid aortic valve. I was, as others have mentioned, horrified.

But within a week I have joined five facebook groups and frequented places like this and learned so much. I have actually head zero horror stories, but I have heard a ton of very inspirational recovery stories, from people who did this years ago, to people who just did this last week and are already up and walking.

There is some danger, but this open heart surgery is not the open heart surgery of 40 years ago. The rate of mortality is actually very, very low. According to Dr. Lars Svennson from the Cleveland Clinic, on the table deaths are lower than .28%. We actually have a better chance of being killed driving to the surgery than we do from the surgery itself.

Does it suck? Sure, but here we are. I have, in a week's time, armed myself with positive stories and shared experiences, and knowledge, and am learning that this is actually very far from the worst thing that can happen to us health-wise.

Be strong, and know that we will survive this. It will be a challenge, but on the other side is a worry free life where your aneurysm will never be a concern again.

Also, I tell myself how lucky I am to have this caught. Had it not been caught, in a year or two I would have dropped dead unexpectedly. So, as much as it would have been awesome to have been healthy and not need this, I do, and when it is done, I will be able to put it behind me and know I was not the person to leave my family at 48 unexpectedly. And that is a true blessing.

Awesome post, James!

WE MUST ALL STAY POSITIVE AND KEEP SHARING FOR SUPPORT AND TO OBTAIN KNOWLEDGE.

❤️

Gigi, your posts always give me hope. I have learned, through you and others on this forum, to stay on top of latest research and stay positive. Stress is hard to turn off, but if I can reduce mine, anyone can. 👍🏻 And I have.

Wow! How blessed you truly are to have it detected so the surgery could be prepared for and not an emergency one. You're right on all accounts, its not the surgery it once was. Medical procedures have advanced a lot and they continue to do so. Recovery is a challenge but different for everyone. Its to my understanding that its a little less painful and faster recovery for men because you are minus the chest anatomy (breast).. You are blessed already, you have the right attitude. Fear does have its place, because of the unknown but it sounds like you have harnessed it already! Whatever you do to prepare, ask questions: what to expect when you awake, will you be "Intubated", if so, how long? Will they get you out of bed the first day to walk? How many tubes will you have and the purpose of each and how long will they remain? What type of internal procedure to hold the sternum intact (there's several)? How will they close the external incision..? What makes you a good candidate for whatever methods they are choosing? What are the possible complications and if one occurs, how would they resolve it? So many questions..most of all PRAY, not only for you but the surgical team also! More importantly, listen to your body during recovery, let it be your guide. You will do fine and it sounds like you have a family that will be a great spport system! Just be prepared to be in a recliner or propped up in the beginning. The recliner was my best friend and it made it easier to get up.. All the best to you, let us know your date! Keep us informed.

Live life one day at a time!!

I am happy to know that my posts provide encouragement. That's why I'm here! I was blessed to get firsthand info from two nurses that took care of me prior to my surgery. They both had recently returned to work from "open heart" surgery. It was a second time for one of them!!! I want to be honest about my experience but not add to anyone's anxiety. I still have little "glitches", I call them but we are working them out. I went on 5 cruises, flew several times and drove from Florida to Texas with knowledge of my aneurysm but I took care of myself. Live..the anxiety will level out and you will learn to live with the knowledge. Knowing really is half the battle!!

Have you been able to fly after the repair? Actually, that is my only real concern out of this whole thing, the thing I worry about the most.

I have a lot of friends in Europe, and not being able to do a long haul flight from Minneapolis to London would be quite a blow to me. 

I will likely need both the root replacement and valve, so I am not sure how that will affect my ability to travel. 

Obviously I will make sure my surgeon understands my concerns.

Yes, definitely make sure your surgeon has a good understanding of your lifestyle. My doctors assured me it would be fine to go on an 8-day cruise 6 months after my surgery. I flew approximately 8 months after my surgery. It was only a 3 hour flight but I drove 2 hours to the airport prior to my flight. Did you choose mechanical or tissue? I had to choose also, just incase they found damage inside that hadn't been realized prior to surgery. I'm sure you'll be flying the friendly skies again very soon!

I haven't had my consult yet, and it was definitely something I was going to bring up. Thanks for sharing that.

I am really, really torn between mechanical and animal for a few reasons. 

I understand..my surgeon explained them to me. A tough call..it kind of feels like choosing the "lesser of two evils".. Pray and trust..! You're going to do just fine.

I live in Martinsville Virginia and I'm not far from the North Carolina line.

Gigi, thanks for all of you impute on the forum. I was recently  diagnosed with an Ascending Thoracic aortic aneurysm. It is large enough that the doctor wants to do surgery. I am 55 and recently remarried.  Totally shocked and scared with this prognosis but I want the surgery behind me so I can live my life with my new love.  They found this as somewhat as a miracle and although shock, I think god they found it before it ruptured. I understand there are some post-surgery hiccups as with all surgeries but what is the long-term prognosis with this elective surgery? (rather if it has ruptured) Has the doctor provided any information? In other words, given my health stays good?  Will I have a normal life expectancy and see my grandchildren.  Thank you again

James, it is shocking news to hear.  Glad they caught yours before rupture. What is the size of your aneurysm? Are you in the US? 

Do you have other heart issues? PFO, ASA, etc. 

Praying for successful surgery and good recovery. Keep us posted. 

Gigi, Thanks for your quick response. I am in the US.  I have always had high cholesterol and take a statin.  My doctor of 5 years retired and the last appointment I had he indicated my BP was a little high. I had a follow up appointment with a new doctor and he decided to put me on BP medicine. (8 weeks after last doctor’s appointment) He also ordered a heart CT scan for me which I  agreed to take. (Not covered in the US by medical insurance) That where the aneurysm was discovered. It is a little over 5.1 but my doctor based on my height and sizes wants it repaired.  James