Miss you guys, but coming here gets me mad.

[RvUsa]

Hi guys, I know I haven't been around a lot, but I am just so messed up in the head! I am trying to deal with my bav and aneurysm, but I am also trying to forget. Do you know what I mean??? Then I come here to relate to people that have been through what I am going through, and I see people talking about having a 4.5cm aneurysm and told they are emergent.... and I can't even get my doc to talk to me at 5.4, with moderate stenosis.

I miss talking to you guys, and appreciate everything that you have done to help me along, and I feel like I am being selfish not coming here and helping others. But I just don't know what or how I feel right now.... a good day for me starts with denial, moves to anger, and winds up with depression... LOL

Ok, off my soap box, time to quit feeling sorry for myself, and if I am going to try to come around more. If I am not around, someone come over to my place and kick me in the shins!

See you soon

John

 

[ctyguy]

John...

If I had a 5.4 aneurysm and my doc wasn't interested ? I would be shopping for a new doc asap.

 

[RvUsa]

Long story Scott, that is part of the reason for the anger/depression. Been to the only docs my insurance will pay for (they were partners in same practice) and of course they agreed with each other.

I could pay for a second opinion out of pocket, but all that would be was just an opinion, even if they said I needed it asap, insurance still wouldn't pay for it.

 

[Star54]

Aren't there any other doctors that will take your coverage in PA or another state close by? I feel for you. I would make a pain in the butt of myself on the phone with the insurance company. I cannot believe that any doc or health care provider would dismiss a 5.4 aneurysm! .....mine was 5.0 and ready to blow.....
Wow....I am so mad for you....don't feel sorry for yourself, get on the phone and get action from your insurance company....don't give up!!!!!!

 

[tobagotwo]

You should go to your insurance company and see if they are bringing in any new cardiologists after the new year. You should ask how much they think your cardiologists' practice will be worth to your widow.

These respected American institutions all say that a patient with a 5.0 cm or greater ascending aortic aneurysm is a candidate for surgery:

The Merck Manual:
http://www.merck.com/mmpe/sec07/ch079/ch079b.html

The Cleveland Clinic:
http://my.clevelandclinic.org/heart/disorders/aorta_marfan/aorticaneurysm.aspx

the Mayo Clinic:
http://www.mayoclinic.org/aortic-aneurysm/thoracictreatment.html

Cedars-Sinai (at 4.5 cm):
http://www.csmc.edu/3885.html

Note: Yale, Stanford, and the American College of Cardiologists say 5.5 cm is the right size for aneurysm repair/resection surgery.

The Merck Manual places the dissection risk of a 5.0 cm - 5.9 cm ascending aortic aneurysm at 5% - 10%. In numerous studies, the mean size of the aneurysm at dissection is between 5.9 cm and 6.0 cm, a size you could easily reach by mid 2010. As they will wind up paying for the surgery anyway, and will not receive any benefit from delaying the surgery, ask them if they wish to shoulder this extra risk of a wrongful death lawsuit just to push the expense off for another year.

Best wishes,

 

[terodac]

We have all felt that, I know I did at first and in that exact order! Depression was always the end of the day result. It does get better I promise! But if I were you a new Doctor would be the number one thing on my list to get done! He needs to listen to you and have your best interest at heart, the stress of this is not doing you any goodn at all and it is a serious problem. God Bless and hang in there! We do feel your pain, fear and anxiety....

 

[Nancy]

Maybe you should ask your cardiologist at what point they feel you will need surgery, and at what point they think you could die of the aneurysm. And you also might want to make them aware of the fact that you know that major heart centers have written their opinions that measurements below your meaurements are surgery ready and beyond, and that you and your family have discussed it extensively, and your family is very fearful of your condition!

Might get them thinking a little more about covering their backsides, just in case. If it's just the two of them, and one gets sued, could mean the end of that practice for good.

 

[Andrew'sMom]

John! Great to see you posting. I kind of get nervous when there is nothing from you for a while. Did you have your WLS? How are you doing? Let me tell you I was reading the newspaper a few weeks a go and a John from Darlington on the obit page caught my eye ... my heart skipped a beat until I realized it wasn't you. You are in a lousy situation. Can your wife drop you from her insurance and can you qualify for medical disability -- medicaid/access? I hope something positive will happen for you soon. Keeping you in my thoughts & prayers...

 

[Lily]

Long story Scott, that is part of the reason for the anger/depression. Been to the only docs my insurance will pay for (they were partners in same practice) and of course they agreed with each other.

I could pay for a second opinion out of pocket, but all that would be was just an opinion, even if they said I needed it asap, insurance still wouldn't pay for it.

John, I'm sorry for what you're going through; a lot of people have struggled with similar issues.

Many years ago our insurance company wasn't cooperating and wouldn't approve a series of tests our son needed. So I called up the California Department of Corporations, which oversaw the insurance companies at that time, and spoke to a wonderful woman in the legal department and after a couple of phone calls from her, the very important testing was approved.

I looked this up: http://www.ins.state.pa.us/portal/server.pt/community/insurance_department/4679

I hope you'll give it a try. It's also helpful to keep a notebook next to the phone and keep track of who you talk to, get their callback numbers, when did you talk to them, what was the essence of the conversation, etc.

 

[netmiff]

Sorry to hear of your predicament; I to wnet through a period where I couldn't come here too often, it was about 6 months to a year after my surgery, I felt like I was prolonging my illness, I was somehow talking myself into thinking I was still "sick" or something, and just not doing me any good mentally - and I do have real problems in that department to start with

I am not sure if there is anything in it, but the Heart and Chest people might have something in their guidelines, too. Sorry, I don't have time to Google it right now, but they are the people who have the guidelines for which heart valve people need prophylactic anti-biotics before dentistry.

 

[Duff Man]

I can identify. I never understood depression until the discovery of my aneurysm. For whatever reason I feel embarrassed to admit that I recently started taking an anti-depressant to deal with the nagging, cyclically negative thoughts. Prior to the aneurysm, my ignorance and even shunning of depression was coupled with almost a Tom Cruise like denial that anti-depressants were effective. I can assure you that they are definitely effective for me. My quality of life is better.

 

[aussigal]

Have you tried a written opinion from Cedars Sinai or similar place of excellence in hearts...I got a written second opinion form a specialist in another state just because I could...
I feel for you buddy...I really do...keep up with your BP meds...some valium might be good too if you are overly anxious...ask your regular doc...

 

[kfay]

John, Sorry if I've got this wrong, but aren't you the guy that your Dr.'s want to have weight loss surgery BEFORE they will do your heart repair and the weight loss surgeon wants just the opposite? If so, what is happening on the weight loss front? Have you had that surgery or making any progress in that area? I can't believe you have an insurance company that only has 2 cardiac surgeon's on it. Surely you can go out of network and pay a little more out of pocket. I wish the best and hope that a solution comes your way soon.

Kim

 

[ponytaila1a]

John glad to see you posting ..... even tho the situation has not improved.
Have you called CC to determine the actual out of pocket estimate ?
I have names and #'s for the financial assistance department if you want to PM me.

 

[james]

Who is your insurance provider? You post that here and someone will post a name of another provider who will treat you correctly.
Please let us help you get help. 5.4 is nothing to be dismissed.

 

[Lynlw]

I'm sorry you are still not making progress on your surgery. IF you did get a 2nd opion from CCF or the bigger hospital in Pittsburg you were talking about, it might be helpful to hear if they recoemnd getting the WLS before or after your heart surgery, since wasn't one of the problems, that the local cardiologist and surgeon recomended the WLS first? IF you had another opinon from well respected center saying they recomended the heart surgery first, maybe that would help convince your insurance to let you go out of network? OR IF they recomended having the WLS first and gave their reasons, maybe that could help you believe that would be the best for you.
Also Did you ever hear about the medicare, you were going to look into picking up so you would have more options available? I can't believe it has almost been a year since you started this, I can only imagine how frustrating that must be. I hope you've been having luck with your diet, I know it can be rough during the holidays.
I hope 2010 is a good year for you

 

[hensylee]

maybe a couple trips to ER would wake up somebody?

 

[BackDoc]

I find it hard to believe that you have no other choices. certainly there are other doc's participating with your plan, even if you have to travel to the next town. I was initially diagnosed in Palm Beach county but traveled over 70 miles for a 2nd opinion and to have my surgery at CC Weston.
get out your insurance directory and see who else is available and where.

 

[Lynlw]

I find it hard to believe that you have no other choices. certainly there are other doc's participating with your plan, even if you have to travel to the next town. I was initially diagnosed in Palm Beach county but traveled over 70 miles for a 2nd opinion and to have my surgery at CC Weston.
get out your insurance directory and see who else is available and where.

It's a little more complicated that that, and I don't know all the detailsbut the insurance is a self fund plan at the hospital his wife works at. and last I remember the card and CT surgeon there want him to have weight loss surgery first and his insurance won't pay for a 2nd opinion at a different hospital, of course it is more long and involved than that.

 

[Gail in Ca]

Geese, I'm sorta glad my aneurysm was at 6 when it was discovered! No problem getting a surgery date! You might mention to your cardio my story. I waited 6 weeks to have my surgery, and my aorta fell apart in my surgeon's hands when he was in there trying to place a graft and then wrap it. How does your doc know the condition of your aorta? He doesn't, I'm guessing.