Too muddled

[Jane E]

Thanks you two. I do really like the team of cardio/surgeon that I met a couple weeks ago. They just haven't gotten back to me on the MRA from May 8. Waiting is wearing me out.

As for gut instinct, it was a year ago when I said to my regular cardio that something had seemed to change. The echo from then, and again in Sept. did not seem alarming. There were changes on the echo on 5/4 and thus I am waiting for the MRA from 5/8. The nurse did confirm the 4.5 ascending changing from 4.O in September.

I think I read the fatigue thread you are talking about and it was helpful. The only assertive time I had about this was the first time I went in Spring 08 and said there seemed to be a change and they kind of chalked it up to me doing less cardio. I was doing less cardio because it was nooooo fun. As I said before chicken?-egg? This time I realized that I am planning my life around fatigue.

I mentioned feeling better when I had the oxygen pumped into the MRA tube. Would that have to do with my heart or some other new thing? ARGH!
Jane

 

[ALCapshaw2]

Jane,

Have you discussed your symptoms with your Primary Care Physician? Do you like, respect, and trust his opinion(s)?

This may be a good time to bring him/her into the loop, starting with the simple fingernail O2 measurement.

For heart issues, I think you need to get your second opinion for a Surgeon with experience dealing with BAV and Connective Tissue Disorders / aneurisms. You could even do your own referal / research. Call various Surgeons offices, ask about the experience of the Surgeon dealing with those issues and/or who they would recommend. Most surgeons will see patients who are in need of OHS based on copies of their latest Echo and other tests. NO Referal needed.

'AL Capshaw'

 

[Lynlw]

Hi, Sorry you are having so many questions, and I know how hard it is to wait for results. We live in South NJ and IF I were going to get a 2nd op for an Aortic surgery in the area I would go to http://pennhealth.com/Wagform/MainPage.aspx?config=provider&P=PP&ID=823 Dr Baveria at HUP. My son goes to the adults with Congenital heart defects center at HUP but has his surgeries at CHOP and alot of the staff go to both centers and I've heard alot of really good things about Baveria (Justin's surgeon is thomas Spray, because he is the go to guy for complex CHD surgeries)

 

[Jane E]

Okay I just spoke with Cardiologist that practices with the surgeon.

He says that the first concern is the amount of change in the size of the LV measurements, because the heart is starting to get grumpy about the extra flow. (I had enlarged stuff when I first was diagnosed years ago and it seems the meds brought everything down to good size for a while.) Now it's growing again.

And, he says the 4.5 on the ascending aorta is at the start-to-fix-it size with BAV.

He says everything is at the threshold but he wouldn't want to wait a year. He would wait 3-4 months and recheck if I felt better waiting. As I posted earlier I work in schools so I would have time of from late June to Sept 1 without taking any sick days (although I have hoarded them since I first learned about the BAV.)

Argh again! I hope somebody doesn't mind all this waffling around but I just want to be sure it's time and there is no significant other or the like to really help me think.

And Al, yes, I looked at the surgeon's CV and he worked at UPenn for a while and taught there. He was a colleague of Bavaria's.

Okay. I have to pretend to work and get away from the computer for a little bit but I look forward to someone's patience with me.
Jane