New member and new situation

[NH_Male]

I find out my AAA surgery date today.

A friend of mine sent me this beautiful note that anyone can use for inspiration when facing this surgery:

Dear Evan:
Why you, indeed? That is one of those cosmic mysteries that we are left to ponder. Personally I don't think of it as anything but bad genetics. That rules out divine retribution and all sorts of other bizarre scenarios. The good news is that we live in an advanced country in 2007: for that you are rightfully thankful. The docs will soon have you out the door and on your way. I don't envy you this siege, but you have been given a chance to demonstrate grace under pressure. Sometimes in our hectic post-modern life we lose sight of the virtues that came normally to Iroquois men, or to Romans raised in the Stoic tradition. They knew that one of the real meanings of life was the opportunity to demonstrate bravery or grace. You can do it.
Thanks for keeping me in the info loop. And, again, best wishes for a speedy recovery.
Jeff

-- I'll keep you all posted on the surgery info. Thank you for your encouragement, kind words, and thoughts.

 

[geebee]

Evan,

Truly a great letter from an obviously good friend. Thanks so much for sharing.

Wishing you all the best.

 

[Karlynn]

Evan, thank you so much for sharing that note. It's wonderful that you supportive friends to encourage you and hold you up.

 

[Susan BAV]

...Personally I don't think of it as anything but bad genetics. That rules out divine retribution and all sorts of other bizarre scenarios...

I really liked that note of encouragement and support, and particularly this part. Thanks for sharing your friend's comments.

 

[Phyllis]

A beautiful note and lots of wisdom to live by. Be sure and let us know the surgery date.

 

[NH_Male]

Surgery date

Surgery date

So Thursday March 1 is the day.

We met with Dr. Bolman at Brigham & Women's today. He is amazing. He set us both at ease, answered all our questions patiently and clearly, and walked us through the entire procedure. He even has a great sense of humor, which is a nice ice breaker as well.

He'll be replacing the ascending aorta and part of the arch and he will be using DHCA for the procedure. He said I was totally normal for a former bicuspidite, bubbling out in my aorta in all the usual places. Nothing weird there.

The kidney removal will follow at about March 6 or 7, so I an going to be doing both procedures during the same hospital stay and they expect me to be in for about 2 weeks.

I have to admit, we walked in basically paralyzed with fear about the risks for this being a second surgery, about feeling like a simple statistic at this major teaching hospital. We walked out feeling like we had a medical concierge working with us. Dr. Bolman referred us immediately to the chief urologist at the hospital, and also to the cardiology team that will be working with me before and after the surgery. They took care of all the referrals and calls and all we have to do is answer the phone and schedule the dates for all the screenings and tests.

The only thing I worry about is this possible need to do a catheterization to take a look at my coronary arteries. Last time I had that test done in 1991 my blood pressure spiked violently and my heart raced. It was a horrible test. Dr. Bolman said that at my age of 37 he may want to see how blocked my arteries are in case I need bypass while I am open. I hate that test. My worry is that my aorta will rupture during the cath. Crazy, right?

---
By the way, my lazy cardiologist was wrong: My ascending aneurysm is actually 5.45 cm not 6.1 as he told me and scared the hell out of me.

 

[Karlynn]

I'm glad you really like your surgeon. That is half the battle.

My surgeon was typically un-doctor-like too. He was extremely gregarious and my husband and I instantly at-ease.

 

[PJmomrunner]

It's strange how relieved you sound at having set the dates, but many people do sound that way. I imagine I will too when the time comes. It sounds like you are in very capable hands. That's great! Do you know if you'll have internet access during your two weeks? We're definitely going to need updates!

 

[Phyllis]

I put you on the calendar for March 1st and I hope you can have someone post and let us know how you are doing with the heart surgery and the kidney surgery. We felt the same way about Brigham and I know you will be in the best of hands there. Best wishes and Godspeed!

 

[geebee]

Evan,

Sounds like you have a great team led by a great surgeon. I am very happy for you since this makes for a much more comfortable experience.

During your last cath, did the problems occur after the dye was injected? I react violently to iodine dye and I wonder if that could be your problem. You might want to try and remember or get your records to determine. If that is the case, a dose of Medrol prior to the dye injection could solve your problem. I had no issue during my last cath due to the Medrol.

All the best to you. We will be with you as much as you want. Just let us know if we can help.

 

[NH_Male]

Yes, PJ, strange isn't it? I think I was a total wreck when I had to wait for both results. Not knowing what was wrong with me drove me insane. Then the bad results, and the insanity changed over to stress and worry.

Now, after meeting this great doctor, I do feel at ease. I am happy that we caught a possibly lethal issue and will be taking care of it in the next two weeks. So, even though in my mind's recesses I worry about not waking up, or waking up paralyzed (ugh) I know that I am in good hands and I will no longer have to worry about whether or not I will end up like poor John Ritter.

I never thought I would be in this position again facing this surgery, but here we are. I guess going through it once already has prepared me for what is coming. I just have my beautiful family this time around which makes this hard.

Phyllis, Thank you! I talked to Dr. Bolman today about some of the glowing feedback the cardiac program at Brigham gets on this message board.

I *think* I will have internet access so I'll post as soon as I am able to.

 

[Arlyss]

Speak with your doctors about having a 64 slice CT to image your coronary arteries rather than a cath. In BAVD, unless there is some genetic predisposition to coronary artery disease or another risk factor like diabetes, the coronaries are typically clear. But you definitely want to know before surgery if there is anything there that needs attention, and what the anatomy of the coronaries is.

Also, please talk to them about checking your existing valve. Do you have reports of your echocardiograms over the years? You are looking for any increase in the pressure gradient across the mechanical valve that might indicate the blood flow is being impeded. Here is a paper that I encourage you to share with whomever follows your valve, which discusses this - even if it checks out fine now, which I do hope it does, it is a great paper regarding following both tissue and mechanical valves long term.

http://www.bicuspidfoundation.com/Evaluation_of_Prosthetic_Heart_Valves_Van_den_Brink.pdf

(By carefully checking the valve now, you can avoid the recent experience of another bicuspid who had his chest opened for the 4th time, just 2 years after his aneurysm surgery, because the mechanical valve needed to come out.)

I was so glad to read that you have a surgeon well versed in the aorta of those who are bicuspid, that he will use circulatory arrest, and soon your aneurysm will be safely gone. The day of your surgery will be a very good day, and when you wake up the aneurysm will be gone!


Best wishes,
Arlyss