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jjay32

jjay32

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Supporting Member
Joined
May 15, 2008
Messages
180
Location
Spokane, Washington
had my yearly echo today, looks like I was stressing for nothing. The aneurysm has stayed stable at 4.6. The only change was a slight increase in aortic valve gradient from a mean gradient of 13 mmHg to 17 mmHg and the peak was up to 30 mmHg (old reading was 22) Cardio was not happy with BP so Toprol xl is now increased to 75 mg a day.
So back to the waiting room, good thing I brought some good books to read:), it looks like it will be awhile!!
 
If you feel any changes, get reevaluated. 4.6 is wishywashy. You never know if it's going to grow suddenly.
 
My anneurysm (first discovered on a routine chest xray) stayed at the same size as yours for over 15 years. The bicuspid aortic valve only manifested 12 years later and got bad in only a few years.

My anneurysm remained the same size all those years because I lived as my geneticists advised: LOTS of betablocker medication, no lifting things heavier than 25 pounds, no aerobic exercise, lots of bp checks, no isometric exercises such as pushups.

As Ross said, you can never tell what will happen at that size of anneurysm.
 
Yay! Great news, Jerome! But heed the advice of the others and don't hesitate to get checked if you feel anything abnormal.

Maryka, 15 years seems like a LONG time to have a stable aneurysm. If you don't mind my asking, what beta blocker are you on and how much do you take? I take 20 mg of Coreg and HATE the stuff.

Hope everyone is well.

Cheers,
Michelle
 
Hi DavesMom/Michelle!

Since my OHS in Dec. 2008, I am on the same stuff the rest of "the gang" is on--metropolol plus in the last 3 years I have, for bp, taken cozaar (hyzaar for me for a bit of diarhetic, or however it is spelled). (I think there is a thread somewhere on this site about the miracle cure, or so it seemed, of Cozaar, which had been found to shrink aneurysms--at least in Marfan people. I learned about Cozaar from Dr. Hal Dietz at a presentation at Johns Hopkins.)

I used to take Zebeta prior to OHS. I could not tolerate some of the more classic and generic beta blockers. I took HUGE amounts of Zebeta. I had no trouble missing aerobic exercise (such as my old favorite, recreational dancing) because the beta blockers made me so exhausted that I did not want to exercise anyway, ha ha. It was worth it, however, for me to wait for my OHS. I had to overcome some surgical phobias before my OHS. I needed a lot of time to get used to the idea of OHS!
 
Maryka said:
My anneurysm remained the same size all those years because I lived as my geneticists advised: LOTS of betablocker medication, no lifting things heavier than 25 pounds, no aerobic exercise, lots of bp checks, no isometric exercises such as pushups.
Click to expand...

If a medical professional toldme that.... we would do one of two things immediately:
1) Get my surgery on the schedule for ASAP and get this BS over with.
2) Forget the whole thing and do as I wished.
 
Roxx_yer_Soxx said:
If a medical professional toldme that.... we would do one of two things immediately:
1) Get my surgery on the schedule for ASAP and get this BS over with.
2) Forget the whole thing and do as I wished.
Click to expand...

A lot of us wish we could.

1. You won't get it until they're ready.

2. You might die because of it.
 
To all of you who are critical of my choices (which I might point out worked out perfectly for me):
1) I was a single parent to a child who needed to be reared into adulthood and independence. (OHS is always very risky, in case you never heard that! The longer you wait, the more likely the surgery will get safer, which it did in the 15 plus years I bought for myself.)
2) OHS never leaves you “all better” or “good as new”. You trade one problem for another—in my case a permanent disability we call a heart valve replacement.
3) I never had a “jock mentality” but have a basic contemplative, meditative personality. Sure I loved dancing, but I love living, breathing and meditating much more.
No one (doctor or otherwise) suggested I get surgery before the time I got it. I was just in the waiting room a very long time.

(Besides all of this I almost died of anesthesia during surgery as a child—a very big warning in my life to not have surgery unless absolutely necessary.)
 
I think your choices were very reasonable. The restrictions suck, but it does beat the alternatives. No one is "as good as new" after valve replacement, but I'm not sure I follow the "permanent disability" part.
 
Maryka said:
OHS never leaves you “all better” or “good as new”. You trade one problem for another
Click to expand...

I agree. I actually think that is the elephant in the room...cardios and surgeons won't admit it to you , but it's true and that's one big reason so many of them want you to wait until there is no choice but to proceed with surgery.

Jim
 
Maryka said:
Hi DavesMom/Michelle!

Since my OHS in Dec. 2008, I am on the same stuff the rest of "the gang" is on--metropolol plus in the last 3 years I have, for bp, taken cozaar (hyzaar for me for a bit of diarhetic, or however it is spelled). (I think there is a thread somewhere on this site about the miracle cure, or so it seemed, of Cozaar, which had been found to shrink aneurysms--at least in Marfan people. I learned about Cozaar from Dr. Hal Dietz at a presentation at Johns Hopkins.)

Hey Maryka!

Interesting that you brought up Cozaar. I had my echo and annual cardio appointment today and all was fine. (Yay me!) Of course my echos are always good - I'm more concerned about the CT scan to check the aneurysm and that won't come until March.

The only concern my cardio had was that my BP still runs in the 130s and 140s, although I know it's much higher at work. She wants my BP no higher than 120/85 so I have to get back to her in three weeks with more readings. If they're still high she wants to add Cozaar.

I may fight her on this. I'm already really fatigued thanks in part to Coreg (and probably my seizure med as well) and don't want to be comatose. Perhaps I heard her wrong about taking both at the same time - maybe I would switch the Coreg for Cozaar - but seems to me that both would be overkill.

We'll see what happens.

Hope all's well. Take care.

Cheers,
Michelle
Click to expand...
 
Cozaar and Hyzaar for shrinking aneurysms

Cozaar and Hyzaar for shrinking aneurysms

I do NOT believe that Cozaar (or Hyzaar) cause fatigue. For me, it is beta blockers that cause that. ;)

The local head of the Marfan support group was put on Cozaar by her cardiologist long before the miraculous aneurysm shrinking qualities of this drug were noted. She and her DR. noted that her aneurysm had shrunk some after she went on Cozaar, but at first thought it was a fluke with the echo. Later Dr. Dietz, and others, discovered that the drug really does shrink aneurysms!

Dr. Dietz and others have put children with Marfans on Cozaar with miraculously good results. At the lecture by Dr. Dietz I went to, he said they now believe that some Marfans symptoms are somewhat like an auto-immune problem where the body destroys certain tissue (in Marfans, it is connective tissue). So, last I heard, Marfans is now thought to be a problem of the body destroying connective tissue rather than the body not making enough connective tissue.:)

Dr. Dietz also was involved in giving Cozaar to children with Muscular Dystrophy and, with certain types of MD,the MD problems were reversed.:confused:

So, I would say to accept the Cozaar! :D
 
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