Aortic dissection

Posted by lorettat @lorettat, Oct 20 1:26am

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?

16031743385885947822850605224966

Hello, sorry about your condition.
What is your age, and where do you live(state & city?).
You are not enrolled in the affordable care act?
Depending where you live are you able to get medical in Ca. Or Medicaid in other states.
Have you tried a county hospital? A for profit hospital generally will not be much help.
What Rx was $800.00 a month?
Do you have family that can help you?
I’m guessing with the condition you are unable to work.
I wish you well.

REPLY

Hi @lorettat, I wanted to take a moment and welcome you to Mayo Clinic Connect. I did get your private message, but I am so glad you decided to share your story with the group. Connect has lots of members that share your similar experiences. I'd like to invite @anniejam, @twocents, @degarden_girl, @cobweb, @Drew944, @anniejam, and @crhp194 to join your conversation and share what they have experienced. I am so sorry you are dealing with constant pain, lack of sleep and problems with insurance while dealing with this diagnosis.
@lorettat, I know you mentioned that you were started on a medication. Were you able to still start it given the high price? Did you ask the pharmacy if there was a generic form that the doctor could call in instead?

REPLY

My aortic aneurysm has not changed size much and I do not have high blood pressure or clots so I am not on any medicine for it.

REPLY

Thank you for responding so quickly. Actually the social worker from the hospital where I was admitted was so great and caring. She hooked me up with a organization in our town that got me in touch with the company that makes the medication and they are paying for it for the first year. Thank God I don't know what I would have done without her and the companies help. I am hopeful that I will receive my SSI and will then have insurance so I can get the medical treatment I feel I need. I can't walk more then 20 feet or so before my legs give out my arms especially my left one starts to hurt so bad I can't stand it, I'm out of breath, and my heart beats so fast I fear I'm about to have a heart attack. I am not by any means a medical professional, but we know when something isn't right with our bodies. It's just getting someone to listen to us and being able to afford the care we need. In today's society, especially being a drug addict, as I am, when you go to the doctors or the e.r. and tell them your in pain they basically laugh you out of the hospital. It infuriates me. I want to jerk them up and scream to them that pain mess are not the drug of my choice. They act as if if we are an addict that that somehow exempts us from honestly being in horrible pain. Well it most certainly does not. So it's hard to get doctors and nurses to take me seriously when I tell them I'm in excruciating pain, can't sleep and feel like there is something else they are missing going on with me. I fear I am going to die because they think I am just a junky looking for a fix. There are way easier ways to do that if that is what I am looking for. But to answer your question I was able to get my meds but unfortunately there are no generic forms of this medication. I just keep praying that they will give me my SSI so I can have some insurance. Do any of you guys receive ssi for your condition?

REPLY
@funcountess

Hello, sorry about your condition.
What is your age, and where do you live(state & city?).
You are not enrolled in the affordable care act?
Depending where you live are you able to get medical in Ca. Or Medicaid in other states.
Have you tried a county hospital? A for profit hospital generally will not be much help.
What Rx was $800.00 a month?
Do you have family that can help you?
I’m guessing with the condition you are unable to work.
I wish you well.

Jump to this post

I am 50 I do not qualify for medicaid e unless approved for ssi. I live in Tecumseh Oklahoma. I have no family other then my husband and we are very poor. He has had 3 back surgeries and a neck surgery and is not in good health and can not work. I just believe that God will provide what I need when I need it. There is not much to chose from here. The medication is called elliquis. I can not afford insurance I wish I could. I haven't giving up one thing about me is that I am a fighter and don't give up or in easily 🙂

REPLY

Hi,
I’m glad you got help from your local hospital.
You should qualify for Medicaid, are you thinking of Medicare?
I guessed you were around 50 from the photo you posted.
I hope you also get help for your addiction problem. Eliquis will keep your blood from getting blood clots, but remember you taking addictive drugs could interfere with the Rx drugs to help your condition.
You need to tell the doctors everything you are on, even over the counter.
Sorry your husband is in poor health, I’m sure it’s difficult on both of you.
The connect group has a bunch of very nice people from all over the U.S. and off shore countries.
We come from all walks of life, and we learn from one another.
Wish you well.

REPLY

Thank you. When I can get an actual doctor I plan to let them know everything. I just don't want to go through unessesary stress of being looked down on and not taken seriously. I hope I find a good doctor that will listen to me and look past the label put on addicts that we all are just seeking a high. I don't like taking pills never have. I don't like the way they make me feel. I tend to go the other way. I don't even drink or smoke pot. So I hope they listen when I tell them how bad I hurt and not just for myself but for other addicts and others that maybe dealing with this same issue. I know before this happened to me I was one who thought it's just a blood clot how bad could it really be hurting but now I know and I have to apologise for my ignorance. I'm sure each case is different, but blood clot pain is real and can be off the scale of they're 1 to 10 pain rate scale.

REPLY
@amandaburnett

Hi @lorettat, I wanted to take a moment and welcome you to Mayo Clinic Connect. I did get your private message, but I am so glad you decided to share your story with the group. Connect has lots of members that share your similar experiences. I'd like to invite @anniejam, @twocents, @degarden_girl, @cobweb, @Drew944, @anniejam, and @crhp194 to join your conversation and share what they have experienced. I am so sorry you are dealing with constant pain, lack of sleep and problems with insurance while dealing with this diagnosis.
@lorettat, I know you mentioned that you were started on a medication. Were you able to still start it given the high price? Did you ask the pharmacy if there was a generic form that the doctor could call in instead?

Jump to this post

Have my appt with surgeon next week to review my tests. Trying to destress in this political season. Keep exercising and not lifting over 50. I guess you can worry yourself to death or go with the flow.

REPLY
@lorettat

Thank you. When I can get an actual doctor I plan to let them know everything. I just don't want to go through unessesary stress of being looked down on and not taken seriously. I hope I find a good doctor that will listen to me and look past the label put on addicts that we all are just seeking a high. I don't like taking pills never have. I don't like the way they make me feel. I tend to go the other way. I don't even drink or smoke pot. So I hope they listen when I tell them how bad I hurt and not just for myself but for other addicts and others that maybe dealing with this same issue. I know before this happened to me I was one who thought it's just a blood clot how bad could it really be hurting but now I know and I have to apologise for my ignorance. I'm sure each case is different, but blood clot pain is real and can be off the scale of they're 1 to 10 pain rate scale.

Jump to this post

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.

REPLY

Hello everyone. My husband just had surgery for a total arch replacement due to aortic dissection. According to daily hospital reports it’s listed as resection/repair ascending aortic aneurysm. We haven’t had our follow up appointment yet which is scheduled for 11/17. During the emergency surgery, dr told me he will need another surgery to repair the descending artery. My husband had a right carotid artery dissection in July, which the neurosurgeon didn’t want to do surgery and wanted it to just heal on it’s on. From July to October 8th the dr stated that it healed. 2 days later the aortic dissection occurred. I would like any help with understanding questions that I need to ask and also maybe seeking a second opinion. Thanks

REPLY
@jonpens

Hello everyone. My husband just had surgery for a total arch replacement due to aortic dissection. According to daily hospital reports it’s listed as resection/repair ascending aortic aneurysm. We haven’t had our follow up appointment yet which is scheduled for 11/17. During the emergency surgery, dr told me he will need another surgery to repair the descending artery. My husband had a right carotid artery dissection in July, which the neurosurgeon didn’t want to do surgery and wanted it to just heal on it’s on. From July to October 8th the dr stated that it healed. 2 days later the aortic dissection occurred. I would like any help with understanding questions that I need to ask and also maybe seeking a second opinion. Thanks

Jump to this post

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?

REPLY
@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?

Jump to this post

Considering seeking appointment with Mayo clinic

REPLY
@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?

Jump to this post

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

REPLY
@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

Jump to this post

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.

REPLY
Please login or register to post a reply.