Okay another Question: Comfort Level

[cbdheartman]

I am obviously consulting with the cardiologists and surgeons on this one. I've been given the okay to run.

But here is my question. If you had a 4.9 cm aneurysm, would you feel comfortable:

a) going on 20-30 minute runs 3 times a week?

b) lifting up your 30 lbs children?

c) bicycling?

d) do sit-ups?

e) powerwalking?

f) playing tennis?

g) playing basketball?

h) touch football?

i) water tubing?

j) sledding?

k) golf

l) mowing the lawn


What sorts of athletic pursuits would you be comfortable engaging in?

 

[Ross]

No, I would not. I think you need to seriously lay off most of all of that activity until this is fixed. Did you ever play with firecrackers when you were a kid? Remember your buddies daring you to hold the firecracker in your hand and watch the fuse burn, making sure to throw it before it blew? How many of those firecrackers did you light that the fuse burned instantaneously and blew almost immediately?

At 4.9 I would not be doing anything. That's my experience talking.

My friend, I'm not joking here. You are in danger. I cannot stress that enough. I will not stop stressing it until you have the surgery and your back here telling us about it! You can hate me all you want to for my brutal honesty in the matter. I'd rather you do that then die.

 

[Lynlw]

I agree with Ross, but was also wonderring, do you know what the measurements are of the rest of your aorta? I was trying to figure out the reasons some docs have told you to wait. I know with kids, since they are all different sizes and growing, there isn't a "magic number" but a few things come into play, like the differences in the measuremnt in the rest of the aorta compare to the aneurysm.

 

[cbdheartman]

I agree with Ross, but was also wonderring, do you know what the measurements are of the rest of your aorta? I was trying to figure out the reasons some docs have told you to wait. I know with kids, since they are all different sizes and growing, there isn't a "magic number" but a few things come into play, like the differences in the measuremnt in the rest of the aorta compare to the aneurysm.

Here's what the Cardiac MRI April 2009 said (Mind you that the 4.9 comes from a CT-Scan a week ago at the Cleveland Clinic and I don't have that report in front of me). If anyone can make heads or tails out of this, I'd appreciate it:



Measurements (normals)

LVEF57 % (56-78) LVSV 143ml(51-133) LVEDV 252(77-195)
LA 39mm(21-39) MPA 26mm(16-33) LPA 14mm(12-33) RPA 18mm(12-23)

Ascending Aorta 41mm(22-38) Descending Aorta 25mm(14-26)
IVS 8mm (6-12) LVEDD 60mm(37-54) LVLW 8mm (5-11)
RVEF 57% (47-74) RVSV 129ml(52-138) RVEDV 227ml (88-227)

Aorta at sinuses 52mm Aorta at right brachiocephalic take-off 29mm
Aorta at diaphragm 20 mm

Indexed values (normals)
BSA 2.18 m2
LVEDV/BSA 116ml/m2 (47-92) RVEDV/BSA 104ml/m2 (55-105)

Structure
The left ventricle is enlarged The remaining cardiac chambers are normal size. The ascending thoracic aorta is enlarged primarily in the aortic sinus and proximal ascending aorta, tapering to a normal diameter before the arch. The descending thoracic aorta is normal in size. There is no evidence of dissection. The pulmonary arteries are normal in size. The pericardium is normal in thickness. CEMRA of the aorta was also performed to generate a 3D model. Navigator-assisted coronary imaging gave excellent image quality and the RCA, LAD and LCX are well-seen and free of significant stenosis.

 

[gustaf]

I probably would if there are no indications for the need of surgery soon. It is very close to the magic 5 cm threshold, so a more complete picture have to be painted by the cardiologists. In any case, after reading a lot, my absolutely personal and layman's view is that these things happen when they happen based on inflammatory processes etc. related to the CTD. I would still avoid deep sea diving (I didn't though...), car crashes and Nasa's G-force centrifuge.

What is really important is to learn the symptoms for a beginning dissection, and unfortunately most cardiologists are not clear here. Quite a few things can be learned by our friends with Marfan's syndrome, who seem to have more experience here.

Also, ask you cardiologist to make a short explanation of your condition in an email (I keep it in my and my wife's cellphones), which is handy when it takes too long to transfer patient data between hospitals (it frequently does).

::g

 

[gustaf]

I should probably add my standard phrase. If it is recommended for you to have surgery, and the 4,9 cm could indicate this, please have it as soon as possible. It is more of a time bomb issues then rather than something that is caused by your actions.

However, I am not a doctor, and again, this is my personal view.

::g

 

[tobagotwo]

Your descending aorta is also near its upper limit of normal as well.

Do what you like, but I would walk for exercise, if it were me, and I don't mean power walk.

The more stress your heart applies to the aorta by pumping harder, the more pressure on it to grow. See it as an old garden hose with weak spots. The more pressure you put through it, the more the weak spots bulge. The more your aorta grows, the more apt it is to dissect.

This is one place where the charts and numbers help: the relationship between aorta size and chance of death is very clear. Increase the size, increase the likelihood of death.

You can't run your way healthy through this. You don't need to run to survive, but you do need your aorta.

Best wishes,

 

[Maryka]

By the way, please tell your wife, if she has to call 911 for a possible dissection, to remember that you can be flown from Holy Cross Hospital (your nearest hospital, I believe) to Johns Hopkins. I have a freind who had to do that. He was a tall teen (hate to harp on this) but he survived. He has had to have his lower aorta repaired also since then, but not in such an emergency. That is common in those who survive a dissection. (You probably will not be aware enough to give these directions in case of dissection.)

It does help to cover all the alternative plans, right?

 

[netmiff]

I was told to do NOTHING, (not even cycling) except walking, and I am not an exercise freak or anything like it. NOT to lift anything heavier than 10 lbs, and not to do anything strenuous - cardio said if I had to hold my breath or grunt or make an effort, that was too much !!!!

 

[Faye]

While I was waiting for the time to be "right" for my surgery to replace my aortic valve and ascending aorta, my cardiologist told me ABSOLUTELY NO to anything more than a fast walk on flat surfaces. I was also told to not lift anything over 10 pounds. He was adamant about it and very clearly described to hubby and me what could happen if I ignored his cautions.

If I were you, I wouldn't do it. I would get the surgery behind me and then work to gain back your strength and activity level.

Just my humble opinion.

 

[bugchucker]

You've received a lot of mixed messages here. I agree that you should be very concervative, if the cardio says you can run, I would walk (gentle pace). Always have your phone with you and if you don't already have one I would recomend buying a heart monitor and keep your bmp no more than 20-30 beats above resting. But again, I'm no doc or expert, your plan needs to be created by your cardio. Have you consulted with a surgeon yet to get your date on the book? Hope your doing well!

Phil

 

[cbdheartman]

THANKS ALL!

Maybe this is TMI, but what about relations with a spouse? Sexuality is fraught with enough baggage that I certainly wouldn't want that to be added to it!

 

[tobagotwo]

Sex transcends all medical boundaries. If you're capable of doing it, you can do it. Nothing short of actual paralysis would prevent me.

Hell, there are lots of worse ways to go.

For caution's sake, I suggest not swinging her over your head during courtship...

Best wishes,

 

[Maryka]

When I was at a Marfan convention years ago, a man asked the surgeon/speaker about sex. The surgeon/speaker said "sex is OK, but please no bells and whistles." I guess you will have to figure this out for yourself, lol!

 

[Ross]

YES! A new SEX thread! Party on!

 

[kfay]

THANKS ALL!

Maybe this is TMI, but what about relations with a spouse? Sexuality is fraught with enough baggage that I certainly wouldn't want that to be added to it!

TMI? On here? Are you kidding? I can't think of a single subject that hasn't been discussed! And of course, you have now touched on Ross' favorite yet once again!

 

[cbdheartman]

I agree that it wouldn't be a bad way to go, but I think it would have serious ramifications for my wife!

 

[Ross]

I would proudly die with a smile on my face.

 

[Gail in Ca]

Mine was at 6 and I didn't even want to vacuum!

 

[StephR]

Mine was diagnosed at 5.1 in Oct 2008. I scheduled surgery for Feb 2009 and chose to cease my physical activity. My Dr advised me to avoid strenuous activity but I decided to limit all activity. Better safe than sorry!