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srounkle
@srounkle

Posts: 10
Joined: Sep 03, 2017

Regurgitating Bicuspid Aortic Valve

Posted by @srounkle, Sep 11, 2017

I have been extremely symptomatic, off and on, for approx 8 years from Regurgitation and a regurtitant jet, which I am concerned is causing an aneurysm in one of the major surrounding vessels (carotid or subclavian?). I have left side weakness and extraordinary pain in my left neck, face, eye and head. I am told my ejection fraction isn’t bad enough to repair the valve yet, despite being close to passing out almost every time I change positions or even squat and stand up. I believe I need further follow up tests do determine the cause of the pain, but I also understand the monetary issues this country deals with in treating patients.
My question is simply, what can I do for exercise which isn’t going to cause me more, or worsen my current problems? I don’t know what I should be taking as far as supplements either. I won’t last until my ejection fraction reaches 50%, I’m having every symptom listed and more, and except hemoptysis. I can’t exert myself much on most days and have a significant increase in pain for days after I have to exert myself much. Does anyone else in a similar position have decent enough insurance to have been told how to proceed with something like this? I was having heart attacks on the job as a paramedic and my ekg with obvious ST-elevation and stress tests showing ischemia haven’t been enough to get anyone to take me seriously….which probably has more to do with my being poor and on Medi-Caid now, than anything, but some advice would be greatly appreciated.

REPLY

Hi @srounkle,

Thank you for sharing your history on Mayo Clinic Connect. I can only imagine how frustrating this all must be.
I’m including some information from Mayo Clinic regarding aortic regurgitation: http://www.mayoclinic.org/diseases-conditions/aortic-valve-regurgitation/home/ovc-20343092

I’d like to introduce you to Connect members @hollyn @mlan68 @shakuni11 @ch246cf10 @kimf @CG1234 and who have discussed aortic valve regurgitation, valve replacement, and bicuspid aortic valve, and may be able to offer more information. I’m also tagging Mentors @hopeful33250 @predictable @cynaburst as they may have some thoughts to share with you.
You may also wish to view these discussions:
– Aortic Stenosis & Valve Replacement: https://connect.mayoclinic.org/discussion/aortic-valve-calcification/
– I am new to this community and to the Mayo Clinic: https://connect.mayoclinic.org/discussion/i-am-new-to-this-community-and-to-the-mayo-clinic-in/

If you call any of the numbers on this Mayo Clinic webpage, http://mayocl.in/1mtmR63, there are representatives who will be able to give you more information about costs and any other questions you might have regarding insurance, etc.
@srounkle, what does the doctor attribute your symptoms to, if not low ejection fraction?

@srounkle

I am sorry to hear of your heart problems and symptoms that continue to bother you. I can certainly understand your concern. If I’m understanding correctly, it sounds as if you have left-sided weakness and pain as well as having a history of heart attacks. If that is all correct, I’m wondering what tests you have had done to evaluate these symptoms and what meds you might be taking.

Your doctor would be the best one to advise you regarding appropriate exercise, etc. If your current doctor will not do that, then a second opinion would be a good option. Also, given the left-sided weakness and pain – have you had an evaluation for a stroke? Have you sought a second opinion?

Teresa

Hi @srounkle, and welcome to Mayo Connect. You already have received some good comments and advice from @kanaazpereira and @hopeful33250, so without wasting any more of your time, I have two immediate suggestions: First, call Mayo Clinic today and have the conversation Kanaazpereira recommended. Second, contact your primary care physician tomorrow and make an appointment for a review of your treatment thus far and your current symptoms. If your PCP doesn’t give you confidence in how to approach your situation, get a second opinion — or even a third. Your phone conversation with the Mayo Clinic counselor can overcome your doubts about getting treatment under Medicaid. Turn everything you want to talk about with Mayo Clinic and your PCP into questions, not conclusions. And if you can, take somebody with you to take notes on what the doctors tell you. Martin

@hopeful33250

@srounkle

I am sorry to hear of your heart problems and symptoms that continue to bother you. I can certainly understand your concern. If I’m understanding correctly, it sounds as if you have left-sided weakness and pain as well as having a history of heart attacks. If that is all correct, I’m wondering what tests you have had done to evaluate these symptoms and what meds you might be taking.

Your doctor would be the best one to advise you regarding appropriate exercise, etc. If your current doctor will not do that, then a second opinion would be a good option. Also, given the left-sided weakness and pain – have you had an evaluation for a stroke? Have you sought a second opinion?

Teresa

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Before I reply, I want to say thank you for this support! It is amazing how much it helps, just to be believed and talked to like I’m a decent person going through a tough time, rather than the wimp I’ve been being called by my “support system” and ex’s at home. Thank you all for taking the time and for being decent when asking questions. I’m sorry about my assumptions too, I realize I’ve been doing that a lot lately, I think because it has been done to me for 6 years regarding my health.

I mentioned that all of my problems and the disbelief of everything I say about my health, signs, or symptoms started when I lost my insurance with my job as a medic, didn’t I? The Mayo Clinic is the same as every other hospital in this country though, as I suspected. I am not worthy of a decent life, decent health care, or anything else because I can’t keep a job like this. I am a Medi-Caid (Medi-Cal) patient. I don’t have many rights and no one will treat me for this, that I can find. Please check things like that before giving false hope to other dying patients. I let my hopes go up, knowing from experience, not to. This is the greediest country in the world and it regularly kicks people out of ER’s to die when people are as poor as I am. That’s all, and that is how this country treats most sick people, insurance or not, it all comes down to money and power. Bye. Thanks for the false hope.

@predictable

Hi @srounkle, and welcome to Mayo Connect. You already have received some good comments and advice from @kanaazpereira and @hopeful33250, so without wasting any more of your time, I have two immediate suggestions: First, call Mayo Clinic today and have the conversation Kanaazpereira recommended. Second, contact your primary care physician tomorrow and make an appointment for a review of your treatment thus far and your current symptoms. If your PCP doesn’t give you confidence in how to approach your situation, get a second opinion — or even a third. Your phone conversation with the Mayo Clinic counselor can overcome your doubts about getting treatment under Medicaid. Turn everything you want to talk about with Mayo Clinic and your PCP into questions, not conclusions. And if you can, take somebody with you to take notes on what the doctors tell you. Martin

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I called as you suggested and was promptly told that the Mayo Clinic doesn’t accept Medi-Caid (Medical-Cal). Please make sure you know that you accept something before telling patients they do. This is beyond frustrating and it makes me realize why we have so many people in this country who want it to fail. It, and almost everyone in it, is a predator to the weak and sick of this country, always doing its best to knock down those who are already down, and rip them off for what little money they have left.

@predictable

Hi @srounkle, and welcome to Mayo Connect. You already have received some good comments and advice from @kanaazpereira and @hopeful33250, so without wasting any more of your time, I have two immediate suggestions: First, call Mayo Clinic today and have the conversation Kanaazpereira recommended. Second, contact your primary care physician tomorrow and make an appointment for a review of your treatment thus far and your current symptoms. If your PCP doesn’t give you confidence in how to approach your situation, get a second opinion — or even a third. Your phone conversation with the Mayo Clinic counselor can overcome your doubts about getting treatment under Medicaid. Turn everything you want to talk about with Mayo Clinic and your PCP into questions, not conclusions. And if you can, take somebody with you to take notes on what the doctors tell you. Martin

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@srounkle, I’m sorry that we had a misunderstanding about your medical services. Your original posting said you are a client of “Medi-caid” which looked to me as an alternative spelling for the nationwide “Medicaid” program. I now understand that you are a client of Medi-Cal, the California component of Medicaid. As a general rule, Medicaid benefits from a state must be spent in that state, and it may well be that Medi-Cal will not pay for services provided in Arizona, Minnesota, or Florida. Like you, I am a patient who volunteers as a mentor to members who come on board here to Connect. Having coverage under Medicare (and living in Virginia) has insulated me from the kind of problems you are having with providers of health services in California, so I don’t have much personal experience with getting Medi-Cal to help out on your behalf. I hope that some of the other Connect members who have been invited to check into your situation will have better information for dealing with your situation.

@predictable

Hi @srounkle, and welcome to Mayo Connect. You already have received some good comments and advice from @kanaazpereira and @hopeful33250, so without wasting any more of your time, I have two immediate suggestions: First, call Mayo Clinic today and have the conversation Kanaazpereira recommended. Second, contact your primary care physician tomorrow and make an appointment for a review of your treatment thus far and your current symptoms. If your PCP doesn’t give you confidence in how to approach your situation, get a second opinion — or even a third. Your phone conversation with the Mayo Clinic counselor can overcome your doubts about getting treatment under Medicaid. Turn everything you want to talk about with Mayo Clinic and your PCP into questions, not conclusions. And if you can, take somebody with you to take notes on what the doctors tell you. Martin

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This is why we should be voting for a universak health plan in this country. So the predatory capitalism in our healthcare, might stop killing so many people to POSSIBLY save money, although it would only cost the very riich a little bit more and everyone else substantially less, which is all anyone in this country thinks, or cares about. I DESERVE healthcare as much as anyone else in this country, if I don’t deserve it more than almost everyone who has told me to “man up” and get over it. I spent my life saving people’s lives, getting paid very poorly for it, and given the cheapest healthcare, which couldn’t (wouldn’t) diagnose either of my hernia’s or anything else, ever. I have been forced to work almost 100 hour weeks with a broken femur and no medical care st all during my first year as a medic, never went to the hospital. I fractured and separated three ribs on the first day of about 120 hour weeks on a fishing boat. I have paid my taxes since I was 8 years old, but don’t deserve anything but to be tortured to death with heart failure while my family and the rest of the country tells me it’s what I deserve. Thank you all so much! I hope one of the 13 people who’s hearts I restarted can appreciate where I’m coming from. I know no one else wants to.

@predictable

Hi @srounkle, and welcome to Mayo Connect. You already have received some good comments and advice from @kanaazpereira and @hopeful33250, so without wasting any more of your time, I have two immediate suggestions: First, call Mayo Clinic today and have the conversation Kanaazpereira recommended. Second, contact your primary care physician tomorrow and make an appointment for a review of your treatment thus far and your current symptoms. If your PCP doesn’t give you confidence in how to approach your situation, get a second opinion — or even a third. Your phone conversation with the Mayo Clinic counselor can overcome your doubts about getting treatment under Medicaid. Turn everything you want to talk about with Mayo Clinic and your PCP into questions, not conclusions. And if you can, take somebody with you to take notes on what the doctors tell you. Martin

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@srounkle, your outlook is understandably discouraging, and with news out of Washington these days, health care under Medicaid may be in for another cost-cutting revision. Often when we encounter patients having trouble with their current medical care team, we suggest that they “get a second opinion” from another doctor with equal or better credentials. Is that a possibility in your situation? Can Medi-Cal be persuaded to link you up with another doctor for a review of your symptoms and a treatment plans?

@predictable

Hi @srounkle, and welcome to Mayo Connect. You already have received some good comments and advice from @kanaazpereira and @hopeful33250, so without wasting any more of your time, I have two immediate suggestions: First, call Mayo Clinic today and have the conversation Kanaazpereira recommended. Second, contact your primary care physician tomorrow and make an appointment for a review of your treatment thus far and your current symptoms. If your PCP doesn’t give you confidence in how to approach your situation, get a second opinion — or even a third. Your phone conversation with the Mayo Clinic counselor can overcome your doubts about getting treatment under Medicaid. Turn everything you want to talk about with Mayo Clinic and your PCP into questions, not conclusions. And if you can, take somebody with you to take notes on what the doctors tell you. Martin

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Yes, the news out of Washington should be harming everyone’s hearts in this country, not warming them, if it isn’t. That is the point I will make every chance I get. About half of this countries population votes on the right to kill other citizens to save money in our healthcare system and let otherwise very productive people turn into radicals who hate this country. It’s very easy to see why we have had so much home grown terrorism in this country, which gets turned into a religious fight which is likely to bring about the self-fulfilling prophecy of those religions. Armageddon is something that, I think, the religious right and their hypocrisy are actually striving towards because they think they will finally be spared some of the pain of life. I know I sound crazy to a lot of people, I guarantee I’m not though. It is just that I think most of this planet is crazy and am tired of the lies, hypocrisy and slaughter of good people, by the sharks of the world. The ones only concerned with money and power at all cost. If you are one, then you are in the wrong, not me. I just get to die because of your votes after working harder and more debilitating injuries and heart problems than anyone I’ve known in this country while being ridiculed for that heart problem and told I deserve it. All with cure, right there and available to some of the people in this country, but not the truly good, hard working ones who didn’t make their lives about money and greed.

Hi @srounkle,

After reading your messages, I can understand why you would be really frustrated; I would be, too.

In one of your first posts you wrote, “I want to say thank you for this support! It is amazing how much it helps, just to be believed and talked to like I’m a decent person going through a tough time…” Connect is a community of patients, like yourself, who listen and offer support and understanding and where possible, provide useful information about health issues which sometimes include insights, suggestions, and tips about navigating the health care system. We cannot, however, control or correct the faults of the health care system or the logistics of health care delivery.

That being said, we feel it’s important for members to know all their options; hence the possibilities and suggestions provided by @hopeful33250 @predictable and myself. We acknowledge the complexities and obstacles that plague the country’s health care system, and we are trying to help you navigate the best path around them. @srounkle, for many of our Connect members, like yourself, who are working hard to improve their health, in spite of huge challenges, hope can be an indispensable resource of support.

Are you able to schedule a follow-up appointment to ask your PCP about supplements, medication and exercise? How might we help you prepare for your next appointment to get the care you need?

I do appreciate the concern and would like to have someone to talk to about this. I know I’m more angry than I should be about this and that it isn’t any one persons fault. It is the fault of everyone who votes on this issue thinking medi-cal (medi-caid) patients are all free loaders if they aren’t working. This type of mindset kills a lot of good people and it needs to be changed. My comments at this point are to point out the flaws that most people ignore or blame the patients for. I have asked for second and third opinions, since I was told it needed replacing 6 years ago, while I was still able to do 72 hour shifts while having heart attacks on the job. Then targeted and fired two years late for a mistake which didn’t change anything in saving a prisoners life. Lost insurance and became an anxiety patient almost immediately after they lost my records. Got a new job and new insurance, received half way decent testing before being fired for needing time to go to Stanford for this and was fired and couldn’t afford those tests anymore and called an anxiety patient again, as soon as I lost my job and insurance again. Our countries health care problems will never change, of people’s minds aren’t changes about letting people die to save money, when they could still be productive. I know I am going to die soon because of this and I give up on wasting my time looking for help in this country. I just want people to realize what their votes mean.

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