1st travel time to Houston, tx

[mbeard]

I am going to Houston on june11-13, for my first anniversary of the BAV and aorta aneurism (4-2), that was diagnosed last August 2013.

I am composing a final list of good questions for Dr. Reardon.

Thanks to all of you. I am scared.

 

[MrsBray]

So this is your final surgeon consult and testing?

 

[mbeard]

No, this is just the first time I have gone back to the surgeon I consulted right after my diagnosis. I guess I am most fearful that the aneurysm has gotten bigger.

Trying not to anticipate problems.

 

[Lex Luther]

I assume this will be your annual MRI to see if surgery is indicated. I have been going to Texas Heart and will have my third annual in a couple of weeks. Always results in my surgeon (Coselli) reviewing test results with me. Expect to continue to be in waiting room because generally asymptomatic and want to delay as much as possible based upon his judgment. Because you indicated it is an annual, appears to indicate the doctors were not seriously concerned after your first review. Good luck.

 

[mbeard]

Thank you Lex , it is my first ct scan and echo with my selected surgeon since my diagnosis last August. Last year, I was diagnosed with congenital BAV and enlarged aorta, unbeknownst to me.

Dr. Reardon at first looked at my local hospital ct scan when I brought it to Houston and based on that he said I needed surgery very soon,

Then he performed his own ct scan and echo and also heart cath( ouch), and he decided I was still in the waiting room.

Question for our group. Do high altitudes bother you valve? I think I am finding that it does.

 

[njean]

Just wanted to wish you luck with your upcoming appointment at THI in Houston.

The medical center holds a very special place in my heart. I had all three of my OHS done there and have continued going there for yearly checkups. So in my humble opinion, you couldn't be going to a finer center.

And yes, high altitudes can have an adverse affect on heart valve patients. We had to stop going to one of our favorite vacation spots in Big Lake, AZ--- 8500-9000 ft., due to the terrible way I felt the last time we visited.

Let us know how your visit goes.

 

[mbeard]

Thank you very much N Jean. I have followed your history once I read you were in Houston. I feel great about my doctor there.

I knew the high altitude was making my heart pound! Learned a good lesson. My heart is most happy at sea level in lower Alabama.

 

[mbeard]

Returned from Houston today, after having my first year diagnosis testing. I was diagnosed last August (2013) at age 58, with BAV and aortic aneurysm (4-2 ---4-7?). That was in my hometown, Mobile.

At that time, I left Mobile and went to DeBakey Heart Institute and met with Dr. Michael Reardon. They did their own testing, and found that the aneurysm was 4.0 - 4.2, and Dr. Reardon said if I was his wife he would not have the surgery at that time.

So now, I have had my first year follow up testing...blood work, echo, and Cta scan.

Unfortunately, Dr. Reardon cancelled my appointment to give me my results. I made the decision to go ahead To Houston and do the testing. And get the results later.

I will see him on July 1, to go over my test results, but I hope his nurse calls me with the results.

Of course my main concern, is the aortic aneurysm having grown.

So weird, today during the testing procedures, my heart was pounding and I thought I was having an event. So stress effects our lives just being in the waiting room.

I realize I am not a heart valve surgery survivor, just in the waiting room.

Thanks to all.

 

[bluefields409]

Many of us spent a LONG time in the waiting room, some even went MIA or found time to write some rude frustration inspired graffiti on the walls..no names :cool2:

I never thought I was going to get out and then WHAM, when I least expected it, done and in recovery mode.

Take advantage of the information, support and camaraderie here. It is a blessing !!

Helen

 

[mbeard]

Hey thanks Helen,

I appreciate your response. A lot. Plus, my first grandchild is named Helen.

 

[ski girl]

If it helps - when no-one is chasing you down the halls after your tests, waving your results at you, that generally means that nothing is seriously wrong. Doctors and hospitals are constantly in triage mode so anything non-urgent gets pushed aside for urgent things.

As frustrating as it may be that you haven't heard anything, take some comfort in that - it's good to be not interesting!!

I've been 'interesting' on two occasions and surrounded by medical staff, and both were nearly fatal. And bluefields (Helen) has recently been very interesting as well - I think we'd both agree that we are much happier when doctors aren't paying much attention to us

 

[mbeard]

Ski girl,

That is what I was told in a kind, gentle faction of super support staff there. I wish I could tame my mind, but I am working on it.

Thanks. Really.

 

[mbeard]

I am blessed to have been called by the nurse of my Houston surgeon . She gave me my results of my echo and CTA scan. My aneurysm is the same size that it was last year at this time. And my regurgitation is still the same, mild to moderate.

I feel very fortunate, to remain in the waiting room. Thank you.

 

[Lex Luther]

Having been in the waiting room, and having just completed my 3rd annual testing today, ( test results not known), because I have been relatively asymptomatic, I honestly am pulling for another year in the waiting room. I am 62, and am contemplating a tissue valve, and would like to avoid follow up surgery, and the medical advancements are still coming. When I was first diagnosed with a 4.7 ascending aortic aneurysm and mild AI, I really wanted to get the surgery over with. Now I have reached some level of comfort, which I guess could change at any time, but for now, I am good.

 

[ski girl]

I am blessed to have been called by the nurse of my Houston surgeon . She gave me my results of my echo and CTA scan. My aneurysm is the same size that it was last year at this time. And my regurgitation is still the same, mild to moderate.

Told ya!! (cheeky grin)

Congrats, long may it continue!

 

[mbeard]

You were right ski girl. Oh yeah

 

[AmyBL]

Hi MBeard!
I recently went through my fourth round of follow-up testing. I have BAV and an aneurysm (4.6 or 4.7) too, and it is scary. Unlike you, I am tested every 6 months and it has gotten somewhat easier each time. When I am objective about it, it is actually amazing how my mind goes through a predictable cycle: Once I am told, "no surgery for you within the next six months," I find my awareness and focus on my aneurysm fades. Soon, I almost feel "normal" (whatever that is), but then about one month before my next round, my mind begins to scan my body for anything unusual that I can then begin to magnify into evidence that my time is probably just around the corner. Then I am told, "no surgery for you!" and the process begins again.
I have found great comfort from the experiences of the people on this list. Also, some big belly laughs! Bluefields and Skigirl were on a roll a few days ago and it was really fun to laugh with people from many different spots on the globe.
For what it is worth, you are not alone.

Take care,

Amy