Aortic dissection

Posted by lorettat @lorettat, Oct 20, 2020

I was recently diagnosed with a aortic dissection the doctors put me on elliquis and a baby aspirin. When I was hospitalized the specialist said he thought I had a genetic disorder. My body produces blood clots at an alarming speed at least 6 have been detected in just the past year and those were only found because I was relentless and made them check for them. Sadly enough I googled my symptoms and figured out that I had blood clots they finally listened to me somewhat and finally put me in the hospital and ran a few test but as I don't have insurance or any money the soon released me and sent me home with an aspirin and a prescription that cost $800 a month with no way to afford this medicine and the words of the nurse that said if you don't take this medicine you will die. I am scared to death. I can't sleep for the pain is unbearable when I lay down, I feel like I have restless body syndrome and the pain in my arms and legs are in arable. The last time I went to the e.r. because the pain was so bad and I had a ripping pain in my stomach, they basically laughed me out of the hospital. I left in years not only from the pain but because of the horrible way I was treated. I'm not a rocket scientist and definently not a doctor, but I don't think I am being treated properly for my condition. But as I said I don't have the resources to afford the medical treatment that I feel I should be getting. I need help is there any out there?

@amandaburnett

Hi @jonpens, welcome to Mayo Clinic Connect. You will see that I moved your discussion to a conversation that was already started on aortic dissection by @lorettat. This allows for you to connect with people that are going through similar medical experiences. I am sorry to hear about your husband's condition. @cobweb recently had a follow up appointment and me able to offer some suggestions on what to ask your husband's physician.
Are you possibly seeking a second opinion locally or are you considering Mayo Clinic?

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I have had 2 different appointments. One ith Cleveland Clinic, the other with top surgeon in Toledo. Bottom line when i was found to have an aneurysm i panicked.. Si i found interviews wiyh surgeons from Cleveland Clinic and Mayo Clinic on line. Then i followed instructions. Remain active, reduce stress, no lifting over 50 pounds. Questions like lets operate and get this over with were dealt with. So i bike everyday. garden. golf, etc. Was told at CC that i had 9 years. Ok, not sure why but i am up for that. My number is 4.7 and has stayed pretty constant. So my advice is turn off the TV politics etc. Does you no good. I watch cowboy movies and various movies, golf sports etc. Good luck

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@cobweb

I have had 2 different appointments. One ith Cleveland Clinic, the other with top surgeon in Toledo. Bottom line when i was found to have an aneurysm i panicked.. Si i found interviews wiyh surgeons from Cleveland Clinic and Mayo Clinic on line. Then i followed instructions. Remain active, reduce stress, no lifting over 50 pounds. Questions like lets operate and get this over with were dealt with. So i bike everyday. garden. golf, etc. Was told at CC that i had 9 years. Ok, not sure why but i am up for that. My number is 4.7 and has stayed pretty constant. So my advice is turn off the TV politics etc. Does you no good. I watch cowboy movies and various movies, golf sports etc. Good luck

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Interesting you were told not to lift over 50 pounds. Had a boss with an AA, and was told never lift over 25 pounds. His AA was in the high 3s for over a decade. He retired years ago, and would be about 90 if still living.
I would think the less you lift the better.

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@funcountess

Hi,
How are you doing?
Did you get your insurance yet?
Still in pain from your blood clots?
It might help you feel better if you are able to get help with your addiction problem. That could be part of your health issues.
Let us know how you are doing.

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I am still fighting with SSI and yes I am still in pain but also noticing more symptoms like being out of breath after waking 25 to 30 feet, my legs seem to be extremely weak, up the underside of my left arm hurts and I have a rapid heart beat. I also have acid reflux bad and have had for about 2 weeks now. This morning noticed a pain in my upper rib cage in my back. And yes I'm sure that a lot of this is tied into my drug addiction. I try to remain sober but as all adicts do I am not perfect and do occasionally fall off the wagon. I wish it not true but unfortunately it is. And I can assure you that if getting high was all I am seeking there are far more easier ways to do so then to be ostrasized, attacked, and rediculed, and stereotyped by doctors, and the general public for something I didn't ask for it to become. It is far easier to score on the streets with less humiliation and embarrassment then to chase pill prescribing doctors around and a hell of a lot cheaper as well.

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Hello everyone! I am new and confused. 🙂

I am now six months out from an emergency repair of an AAA with Stanford type B dissection (quite long, I'm told). I've received excellent care, but have also been left with pretty much "go home and enjoy life". I was in excellent shape when the emergency occurred, and am now off of all medications other than metoprolol for blood pressure. No warfarin, no lasix, no arrhythmia medication, etc. Having read the experiences of others here, I realize how lucky I am. At 72, I now have an Edwards LifeSciences aortic valve and lead a pretty normal life. I've returned to running (intervals on my daily walk) and to lifting light weights. But I was a competitive masters track and field athlete before the emergency, and I'd like to know more about procedures that might actually correct the dissection. That is, I'd love to return to my old lifestyle, and am willing to take some surgical risk to do such. Has anyone found a clinical trial or established procedure for going beyond "go home and enjoy life" status? Thanks, in advance, for any pointers. Lucky and grateful, Rick

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Canadian drugs (including blood thinners – I take xarelto – are MUCH cheaper.) I pay $135 for a 3 month supply! I see there is now a generic for only a fraction of that (and other meds too). Mailing is $10-15.

It is disgraceful what big pharma does to us!!
Here is one economic pharmacy (they price match). If you want to search yourself just make sure you only order from a CIPA approved list. (CIPA.com)

Good luck!! Your story was heartbreaking.
https://www.medicationscanada.com/

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check my post a bit below yours – I accidentally posted it there and it was intended for you.
About how to get meds MUCH cheaper.

(Also ck thread in AFIB group)

Admins won't let me cut and paste it here too.

So hoping you get help!

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