Hello, I'm new and I'm scared!

[hall]

Hi John and Welcome! I would wonder what was wrong with you if you were not scared. Very glad to hear they found out about the AA before the surgery you were going to have. Questions? Ask away. Many people on this forum are very knowledgeable. Best of luck to you.

 

[Ross]

I am a ruptured aneurysm survivor and I can tell you without reservation, that is something you do not want to experience and you'd be lucky to live through it. 5.9 is beyond critical. Not trying to scare you, but don't be surprised if they sling your tail into surgery as fast as possible.

 

[jjay32]

In all your "expert" opinions, do you think a 5.9cm AA and a moderately stenotic valve would be a probable surgery like my PCP said, or am I gonna have to wait and see?
John

Hi, John. The rule of thumb for a AA with a bicuspid valve is surgery at 5.0cm, so yes in my non medical opinion is that surgery will be asap. I too am bicuspid, at this point am crossing over into the moderately stenotic aortic valve range and a 4.6cm aneurysm, this puts me in the waiting room. You have come to the right place for a wealth of information and a ton of support, hang in there!

Jerome (jjay)

 

[Joecb]

Welcome John. You've found the best information source on the web for your condition. I was given a similar diagnosis in January and had surgery in February and found a lot of the answers that I was looking for right here.

It seems there are enough folks here that have been through it that may be able to give you a Cardiologist recommendation, tons of valve info and plenty of personal experiences.

Initially, we all have that "why me" feeling, but when you get to the hospital you quickly realize that your one of many. The only thing that we can do is to be proactive, get as much info as possible and address the issue.

Good luck and we'll see you around.

Joe

 

[ponygirlmom]

John --

I say "yaaay" to your PCP, and "you're fired!" to your weight-loss surgeon. I am going to call him names now: what kind of idiot surgeon would not check the heart health of every single one of his patients, particularly the ones about to have weight-loss surgery?

Your weight complicates your surgery, particularly your anesthesia, so you need to have your surgery done at a place very experienced at heart and/or obese patients.

My father is an anesthesiologist who often works with patients of your size, and he was just explaining to us how procedures differ for different kinds of patients. I've been trying to get him to write something for VR.com. Maybe now he will!

I know what it's like to be surprised by that diagnosis, and to get a late-night panicked phone call about it from my PCP! I didn't have stenosis, but I did have a leaking bicuspid valve and a large aneurysm. My PCP was more scared than the surgeon whom he sent me to see, probably because the surgeon sees aneurysms all the time.

 

[EVELYN]

Hello John

Welcome to our wonderful family. I can't help you on a 5.9, but my gut would say surgery sooner than later. I've glanced at the posts and I'd agree with Cleveland Clinic for you, too. Any OHS is a shocker and an eye opener. Please know that you're so lucky to have found it before it ruptured.

With that said, this group will be here for you!!! You will get throught it and we'll help you get there. Everyone is scared and everyone gets through it.....even though I never would have believed that 7 years ago.

I'm guessing you're an "RV" person.......us too.

Evelyn

 

[Andrew'sMom]

Welcome John,
I am glad you found this site, it's a great place to be when faced with valve disease and surgery.

 

[hatcoleman]

I will be having heart surgery this monday. If i were you i would get all my records and overnight them to the mayo clinic rochester, mn. I sent my records to both mayo and cleveland clinic. Mayo responded the next day after recieving paper work. Your local doctor can expedite things for you. They can get records quicker than you can. Mayo and cleveland will want to do there own test cath., echo, tee. I came to mayo week before last in four days they had be see several doctors with different specialties. They are very thorough. In my home town doctors work like yours do. Takes days and weeks to see a doctor and then to get test results. Mayo is not like that!!! I met with first day there i had echo, ekg, exrays, blood, pulmonary test done. Met with cardiologist and surgeon. Over the next couple of days few more test and heart cath. Cardio. Met me in recovery after cath. Gave me results. Then saw surgeon for 2nd time within an hour. Had talk with him and booked surgery for the 23rd. When i found out i needed heart surgery i told my wife if she or our son had cancer. We would go to wherever the best care was available. And for heart problem mayo is the best ! Sure there are hospitals that do heart surgery everywhere. But these doctors do it everyday. And they get some of the most complicated cases. And you need at least a second opinion if time allows. Check out mayo web site. I am glad i came here. Good luck.

 

[Braveheart]

John- I am so happy that you found this forum. This is a group of some of the most knowledgable and well as compassionate people around.

One of the biggest problems with serious situations is not knowing. IMO the best way to allay anxiety is to understand exactly what is happening. Therefore, my advice to you is read, read, read.

Get to understand your condition, and become familiar with the treatments and options. This forum is wonderful for accessing information. I also recommend Googling for videos of any possible procedures.

Right now, I am in what is called on this forum, "The Waiting Room". Well, I found a video of the operation that I will have, and watching and understanding it made it far less anxiety producing to me.

Knowledge is power!

 

[Bridgette]

Welcome John.

You have been given lots of good advice here, and hopefully it has helped you to get a clearer picture of the way forward.
I don't have anything to add really but wanted to wish you the best of luck with everything.

Bridgette

.

 

[ponygirlmom]

UPDATE: Advice from an anesthesiologist

UPDATE: Advice from an anesthesiologist

John --

After I posted my reply to you, I talked to my Dad. He said that it's very important for you to have your surgery at a major medical center.

If you live in the western part of Pennsylvania, he suggests going to the Cleveland Clinic (in Ohio, of course.) If you haven't heard of it, it's just about the most famous heart hospital there is.

Two other high recommendations are the University of Pittsburgh and the University of Pennsylvania.

 

[Karlynn]

According to Google Maps, Darlington is 2 hours from Cleveland and 1 hour from Pittsburgh.

 

[njean]

Just wanted to welcome you to this forum John & I'm wishing nothing but the very best for you!

Like you, all of us that have been where you are headed, were scared to death of the unknown. Just keep in mind that you need this surgery to continue on with your life & you too will make it back.

Stay strong & focused!

 

[RvUsa]

WOW!!! Thank you thank you thank you! I don't think I am any less scared, but I definitely more confident!

Well, from the sounds of it.... I am gonna have to have something done, and it sounds like it will be pretty quick.

My wife is a critical care RN, and actually works in the open heart unit about 1 night a week, so she sees the worst case all the time. So she is just being protective of me LOL. That being said, she did work for UPMC in pittsburgh which is awesome, but the place she works now SUCKS,*(but it is an hr closer for her to drive) but it is the only place that our insurance will pay for

There are 3 Cardio surgeons, and she picked the "least bad" one, and that alone is scaring the crap out of me. We call the hospital the miracle center because it is a miracle if you make it out alive lol.

I don't know how the insurance will work, but if it is like my WLS, my only choice was the guy "in network" and if I wanted to go somewhere else, then it would only pay 60%, and we can't afford to pay the balance on this sucker, cuz I bet it will be a bundle!!!

As a steeler fan, it is ingrained from birth that cleveland sux... LOL but I have heard they are the best around here, I wonder how I could make this work?

I know I have said it before, but will say it again, thank you for welcoming me, and making feel at home. I am sure you will be hearing from me a lot as this goes on.

 

[ctyguy]

John....I won't hold the fact that your a Steelers fan against you. I've been in Ohio 18 yrs now and while my heart is still with the Giants, I've found a place for the Browns as well.

If you can manage to get into Cleveland Clinic for your surgery (sounds to me like your gonna need it) I would REALLY recommend it. Besides the fact that they do thousands of heart procedures each year they have a surgical staff that can handle your special circumstances. The fact that your such a big guy I think requires a surgeon who has a background with complex cases. You can find several of those without issue at C.C.

The fact that your scared is to be expected. OHS isn't fun, but its certainly something you can get through. It may require you to put off your other surgery. I can't imagine them doing both at the same time and this issue you have trumps pretty much anything else. Try to stay calm, maybe the best thing you can do between now and your appt is to reseach what your hospital/surgical options are from an insurance standpoint.

 

[ponytaila1a]

John....welcome...sorry it is under this circumstance. I have to agree with what has been said about Cleveland Clinic.....but I did not see anyone mention working with their financial counselor to allow you to have the surgery done there with the best possible financial outcome. Also....others here have experience with working with insurance company's to allow for out of network for special circumstances......I'm praying for you.
As stated before...most of us have experienced the shock of the "phone call".

 

[ALCapshaw2]

It sounds like you may need to work with your insurance company, and maybe the Local Doc, especially if he has little or NO experience doing Surgery of the Aorta.

Does your Local Hospital even do Surgery of the Aorta?

What if the Local Surgeon gave you a Referal to Cleveland Clinic?
(or at least one of the Better Hospitals in PA)?

Just trying to do a little Brainstorming...

As you now realize, it is no longer a matter of IF you will need surgery,
just "Who, Where, and When".

Fingers crossed you and your insurance company can come up with a good solution. Your Primary Care Physician or Cardiologist may also be helpful in orchestrating a Referal.

You may also want to get some Quotes on what you need.
(I have some numbers in mind but have decided it best not to guess...)

Think POSITIVE !

'AL Capshaw'

 

[Andrew'sMom]

John,
Hi neighbor ... you are actually IMBY! That's too bad about the insurance situation you are in, I would have definitely sided with the CCF folks, at least for a consult, especially considering your weight issues. We too are die-hard Steelers fans, but have been to CCF for consults!!!!
My gram just made it out of the "Miracle Center" (alive!) although she did not have any valve problems. It was a heart attack w/ 100% blockage. No OHS, they did what they could via cath and now we are just living & loving her day to day for however many days she stays with us!
Anyway, it's good that your wife is an ICU RN, you will at least have an idea of the lesser of the evils when you choose your surgeon. Who do you plan on going with if you don't mind my asking.
Best of luck to you, I'll keep a watch out for your updates!

 

[Ross]

WOW!!! Thank you thank you thank you! I don't think I am any less scared, but I definitely more confident!

Well, from the sounds of it.... I am gonna have to have something done, and it sounds like it will be pretty quick.

My wife is a critical care RN, and actually works in the open heart unit about 1 night a week, so she sees the worst case all the time. So she is just being protective of me LOL. That being said, she did work for UPMC in pittsburgh which is awesome, but the place she works now SUCKS,*(but it is an hr closer for her to drive) but it is the only place that our insurance will pay for

There are 3 Cardio surgeons, and she picked the "least bad" one, and that alone is scaring the crap out of me. We call the hospital the miracle center because it is a miracle if you make it out alive lol.

I don't know how the insurance will work, but if it is like my WLS, my only choice was the guy "in network" and if I wanted to go somewhere else, then it would only pay 60%, and we can't afford to pay the balance on this sucker, cuz I bet it will be a bundle!!!

As a steeler fan, it is ingrained from birth that cleveland sux... LOL but I have heard they are the best around here, I wonder how I could make this work?

I know I have said it before, but will say it again, thank you for welcoming me, and making feel at home. I am sure you will be hearing from me a lot as this goes on.

Don't let insurance bully you! Your PCP can request an out of network hospitalization and get the care you need/want. There are laws in place to ramp up the decision process to within 3 days time. Take advantage of it if necessary. I've had to do it myself.

 

[RvUsa]

J
Anyway, it's good that your wife is an ICU RN, you will at least have an idea of the lesser of the evils when you choose your surgeon. Who do you plan on going with if you don't mind my asking.
Best of luck to you, I'll keep a watch out for your updates!

My appointment on Wed is with Alexander Vasilakis, Cardio Thoracic Surgical Associates Inc. Erica, my wife said if we had to go see some of the others, she would quit her job and go work somewhere else to get better ins LOL.

You guys have given me an idea tho! I have been on social security disability because of severe osteo arthritis in my ankles knees and hips as well as a very arthritic and bad back, (hence the weight issues and the need for the WLS). I was eligible for medicare, but turned it down because I was covered by my wife, maybe I could check into getting it back, but that may take too long