Hello From Ann Arbor

[Duff Man]

Hey guys, thought this might be interesting to you:

I went to an initial consult with my surgeon from UofM today... everything was going as I expected and he kinda poo poo'd my 4.5 cm aneurysm a little bit until I showed him the scans that I posted in the "help me analyze this ct scan" thread. His eyes got real wide and he started talking about having surgery on Monday. He called it a "type 2 a chronic dissection".

He said that at some point I should've died, and it's pretty unusual for people to have a dissection of the ascending aorta and just be walking around afterward. 40% just drop dead... or maybe it's 40% that live, I can't remember.

He had me do a CT scan at 8pm tonight and we're doing a TEE tomorrow... from there it's either "surgery in a week, or surgery in a week." I'm also not allowed to lift more than 25 pounds...

So I'm in a nice hotel with a jacuzzi suite TRYING to enjoy the time with my wife. I can't wait to see what tomorrow brings when I go see him again. I certainly wasn't expecting to stay here in Ann Arbor.

So I guess the moral of the story here is listen to your body.

Cya guys.

 

[Duff Man]

I forgot to mention that he does not want to replace my valve even though it's bi-cuspid. He called my root a normal diameter... but I'm not sure I want any other weak aorta material around to blow up and kill me. He als believes he will graft one of the arch arteries. I suppose it'll be more clear tomorrow as to what he'll want to do.

Pretty scary stuff.

 

[ctyguy]

Aaron...Im sure your a bit freaked out at this point but keep a positive attitude because now you have a plan of action. Obviously having surgery isn't what anyone really wants but in your case it sounds like its necessary ASAP. I was 15 days from diagnosis to surgery for my AVR and when when I spoke with the surgeon the day after my surgery he said I was very lucky, my valve was pretty well toast by the time he got to it.

For the week leading up to my surgery I was given similar restrictions as yours regarding lifting things. Im sure its a precaution that most folks facing OHS are given but I would say its advice worth taking, why risk it ?

Just spend time with your wife, try to keep a positive spin on the whole thing. You seem like a pretty deliberate person and your going to tackle the surgery and recovery head-on which is exactly how you should. Its a daunting thing to think about but your gonna be thrilled when you out the back side of the procedure. I won't say the recovery is a snap, first week your gonna know you've been dorked with, but trust me when I say its not nearly as bad as you think.

Hang in there, we are all here for ya...

Scott

 

[geebee]

Well, I can say there could be tougher ways of waiting for surgery than being with the love of your life in a jacuzzi suite.

I am happy that you seemed to have found a doctor that knows what he is doing and understands the urgency. I wish you all the best for a definitive answer from your tests and a quick resolution so you can get on with your life.

 

[ruth]

Hang in there Aaron!

Hang in there Aaron!

Just want to drop in and send best wishes your way for clarity in your situation.

Take a deep breath, sounds like you may be leaving that waiting room sooner than you'd planned but going into surgery strong is a good thing.

I wish you all the best,

Peace,
Ruth

 

[MNmom]

on the bright side

on the bright side

It will be so nice to have this all behind you in just a week! Its great that you have found a surgeon that wants to do this now, and great that he can make it happen right away! No more wondering - just get it done! Strong going in means a stronger recovery- best of luck, keep us posted!
Ingrid

 

[A New Beginning]

Hey aaron. good luck with everything. I too have a pending surgery next week, but it is to replace my mitro valve with a permanent one.

I wish I could say I was cuddled with my love one right now, but we just got into an argument because I have been so stressed out that I had an axiety attack and just got back from the hospital. I know that it is hard for him too, but i need for him to understand that i just need him close right now.

But, that is ok, because our beautiful daughter is lying here with me and that makes me feel much better.

Sorry to ramble, good luck and I will be thinking of you.

 

[Marguerite53]

Hi Aaron!

You actually sound great to me. I mean you sound calm and resolved and very clear thinking!!! This is excellent news that YOU were able to make your concerns heard and respected.

You're a tough guy with a big heart!!!!!!!!! You will be fine! It is a lot to take care of, and a lot to experience, but you are going to do this and come back here to tell us all about it!

Remember. Breathe in the things you love. Keep them with you for those moments of shakiness. Put them in your pocket! Keep them close. They are there for you. We are here for you, too!!

Wishing you the very best outcome and a quick resolution!!

Marguerite

 

[Duff Man]

thanks for the encouragement gang... I'm really in disbelief. I find myself thinking (incorrectly) this will somehow go away. Everyone of your stories reminds me that this is something usually very survivable.

He brought up and excellent but harrowing point: As soon as that graft is installed, the clock starts ticking. There is no panacea for aorta repair... the graft can become infected and at that point it's a deadly situation.

I'm really unsure about the wisdom of leaving the root when my gradient appears to be slowly rising upward and my valve is even perhaps symptomatic. He said the valve may have to go because of an outract obstruction or something like that, and we'll be better able to tell tomorrow after the TEE.

 

[zipper2]

Aaron, you do wiggle around ,musta missed a post id not read Glad your working with all this and sending this as words of comfort and prayers also for you and yours while your both there.

Take care glad to know whats happening!!!!


zipper2

 

[gijanet]

Wow!

Wow!

I'm glad you showed him those scans! I bet you are in shock. I was in shock just reading your post. From one UofM fan to another, we will be keeping you in our prayers. Keep us posted. Hugs. Janet

 

[Bonzo Dog]

Aaron, so buddy it gets real.

As an avid and perceptive reader of all the info on here you will know the pre-surgery wait is the worst time. Stay positive and mentally strong. To be honest, anticipating infection is not the way to go. To go into that theatre a jittery, worried and spooked man does no favours for either you or your loved ones. Be confident, take strength from all on here who have very successful outcomes.

I look forward to reading your chirpy post surgery postings in a couple of weeks. I look further forward to your postings in years to come, drawing on your positive experiences, offering support to both the worried recently diagnosed and the worried pre-surgery.

Look on the bright side. Dig deep, be stoic.

 

[Duff Man]

The surgeons at UofM have an affinity for carbomedics valves. While I'm sure they're fine for most people, the CM valves appear to lag behind in the hemodynamic performance when compared to most others, and i'm a competetive perfectionist - which makes the valve and I totally incompatible. Why they would be so insistant on an inferior valve, I don't know.

So basically if he opens me up and sees that my root is too dialated, I'm going to get a valve I don't want. It's not looking bright on the bright side this morning.

 

[Phyllis]

Aaron, I'm sure you are shocked, but you must also be somewhat relieved to have this whole thing in motion. You've been pro-active with all of this, so why not push for the valve you want too. Sending you best wishes for the Tee this morning and we will be anxious to hear how it all goes.

 

[Ross]

Aaron do you think the pain you wrote me about the other night might have been the start? Doesn't matter I suppose, but hey dude, if you don't want that valve, tell him what you do want. It's your body and your life, so it's your choice.

 

[Superbob]

Wow, Aaron, I had thought you might be in the waiting room for a while. Must have been startling to hear the doc react like that.

One plus is you are one of the most thoughtful, well-prepared folks I have seen come through here.

I am going to be sending my best thoughts/vibes/prayers to you starting right now. I am confident you will do very well and we will be celebrating your anniversaries on here for many years to come.

Please do keep us posted.

 

[kfay]

Aaron, I don't really have anything to add to what has already been said, however, I wish you well and look forward to hearing from you after you reach the other side.

Good luck.

Kim

 

[upchurch131]

thanks for the encouragement gang... I'm really in disbelief. I find myself thinking (incorrectly) this will somehow go away. Everyone of your stories reminds me that this is something usually very survivable.

Deeb brought up and excellent but harrowing point: As soon as that graft is installed, the clock starts ticking. There is no panacea for aorta repair... the graft can become infected and at that point it's a deadly situation.

I'm really unsure about the wisdom of leaving the root when my gradient appears to be slowly rising upward and my valve is even perhaps symptomatic. He said the valve may have to go because of an outract obstruction or something like that, and we'll be better able to tell tomorrow after the TEE.

Aaron,

Good for you to continue the pursuit! Sometimes, we know our bodies better than the experts. You KNEW it was worse than they told you and you kept on it. On the valve replacement, I guess you can always overrule them and tell them to get it outta there if you are that concerned. Afterall, you were right about the aneurysm!

 

[ALCapshaw2]

The surgeons at UofM have an affinity for carbomedics valves. While I'm sure they're fine for most people, the CM valves appear to lag behind in the hemodynamic performance when compared to most others, and i'm a competetive perfectionist - which makes the valve and I totally incompatible. Why they would be so insistant on an inferior valve, I don't know.

So basically if he opens me up and sees that my root is too dialated, I'm going to get a valve I don't want. It's not looking bright on the bright side this morning.

If you are interested in the On-X Valve, contact Catheran Burnett, RN, at 888-339-8000 ext 265 or [email protected] She had an On-X sent to Dr. Bove at UofM in less than a week for JodyC's surgery. I believe that was the first On-X valve Dr. Bove had implanted. An On-X representative met with Dr. Bove before surgery to go over their recommended implantation technique.

See www.onxvalves.com and www.heartvalvechoice.com for more information on the On-X valves.

 

[marie]

To echo what others have said you've done a lot of research, you're as ready as can be other than the valve choice and I know whatever decision you make will be right for you

Enjoy this time with your wife and easier said than done try to relax.

Good luck and keep us posted. I don't post much but I do read everything so I've been keeping up with you.
Earline