Really sick and scared

[roadracer]

I have been feeling really bad the past 6 months or so, but since I dont have insurance I was just trying to ignore everything. Then a couple weeks ago after a intense workout I seemed to "trigger" something and ended up going to the ER the next morning and have been back 4 times since. First visit, the doctor said the tests looked normal and sent me home. Second visit, I went because I couldn't urinate and was getting intense kidney pain as a result. Again, said all tests were normal and sent me home (unable to fully pee).
I went about everything like normal for a few days, and did another fairly intense workout (yes, bad idea). That night I had a unusually fast heart beat, got up in the morning and fully blacked out. Went back to the ER and that time I got this awesome trauma nurse who seemed to know what he was doing and took me serous. I was rather shocked to find out I had a serious heart condition! They debated if they should keep me or not because I dont have insurence. They said they were keeping me, then came in and released me with a prescription for heart meds, told me not to do anything that would raise my heart rate, and gave me contact info for a cardiologist who would see me for free.
Heart meds made me feel even worse and gave me bouts of a irregular heart beat, so back to the ER, got the same awesome doctors, they told me to stop taking the med (per the cardiologist instructions). So now I still feel horrible and think I might be having some withdraw symptoms (even that I only took it for three days!!!)
They gave me instructions to return to the ER if I had any more episodes, and they would take me back right away.

So the cardiologist cant see me till the end of the month, and he is my only option because I cant afford to see anyone else. I cant get medical assistance (I tried) because I make to much (at a part time job making minimum wage), and we dont have and free clinic in our area. The ER doctor told me that if I dont take care of my heart/health issues, I could very well die from them.

I keep having panic attacks (sure not to good for your heart) I feel like my only option is the ER, and they are only willing to do so much because I dont have insurance and cant pay the medical bills

[tic chick]

roadracer ,

i'm really sorry you are having all these problems, but happy that finally someone took you seriously and found out the cause!

if the cardio doc can't see you until the end of the month and the er docs told you to keep coming back to the er, then that's what you do! hospitals that get ANY money from the government (including medicaid and medicare), have to provide care for individuals who have no money. this is the law. they have to give free care up to a certain dollar amount per year...so don't worry about paying them, they will get their money for your care.

make sure you take all the records from your er visits to your new cardio doc. you can ask for transcripts to be copied for you from the medical records department. they have to do this for you for a small fee or no fee. especially get the results of any tests taken. this will show your cardio doc what is happening with you.

a lot of times a panic attack feels about the same as a heart attack... don't worry, panic attacks are caused by a chemical imbalance in the brain, although the stress they cause is bad, once you are over the attack you are ok.

make sure you understand what is wrong with your heart from the cardio doc. ask him if there are any other treatments for it besides drugs. a lot of docs do free work also for patients who have no money.

i wish you well, roadracer and hope the cardio doc is good for you. please try not to worry about paying the hospital or the doc...as i said, they usually have to take on some patients for free. just listen to your cardio doc and do what he suggests.

be healthy!
jeannie

[peglem]

Sorry to hear you're having such a difficult time. I don't have much experience with this sort of thing, but it sounds like your kidneys are involved as well. What kind of heart condition did they say you have? I could do some searching for you and see if I can help that way. Do not hesitate to go back to the emergency room if you have any problems!

[Ponygirl]

Roadracer!!! So good to see you, again! Although, I'm so sorry about, the reason!
I remember, you used, to be good friends with a girl from the forums, but, I can't remember her name.
I wish I could do something to help, but, I'll keep you in my thoughts & prayers!

Phyllis

[roadracer]

Thanks Jeannie, they sent all the records to the cardiologist and were in contact with him, I will probably try to get copies though so if I need any of them for a different doctor

Sorry to hear you're having such a difficult time. I don't have much experience with this sort of thing, but it sounds like your kidneys are involved as well. What kind of heart condition did they say you have? I could do some searching for you and see if I can help that way. Do not hesitate to go back to the emergency room if you have any problems!

I had a irregular heartbeat/arrhythmia, and it shows on a EKG that I have a long qt interval. They diagnosed me with LQT syndrome. I have to be seen by a specialist in heart rhythm to be sure that is what it is. If the dx is correct, from what I read online, then they will determine if I can get by with just meds and restrictions on what I can do, or if I also need surgery, a pacemaker or implanted defibrillator.

I have had episodes of near-syncope on a regular basis for years, but whatever I triggered the other week seemed to make it much worse. Currently it is so bad that if I try to bend over to put my socks on I fully black out and fall. Going up and down stares makes me dizzy and I get really nauseous when I eat a meal. I have had a constant headache that only went away when I was on the med, but has come back full force since I stopped taking them.
When I am sleeping, if I lay down flat I stop breathing and then gasp for air and cough (my mom says I did this the whole night last night)
Currently, without treatment, I am moderate to high risk of cardiac arrest (why they were debating if they should have kept me in the hospital).
I also have mitral valve regurgitation, if this is related to LQT and also causing these problems, I dont know.

Not sure if I have kidney problems, but I have had some trouble urinating for a long time now. I have always been able to "go", but when all this other stuff started happening, I started having real trouble going, to the point that I feel like my body is building up to the bursting point before it decides it wants to empty (very urgently!)
It has been suggested that I might have some sort of autonomic dysfunction that is causing this and a lot of my other issues.

I think my issues started really getting much worse over the past 6 months. Getting out of bed in the morning has been really hard for months. The nerve pain in my arms and hands hurts all the time now. Swallowing has been more painful/difficult then usual. I am having trouble suppressing my double vision, so everything is much harder to see properly.

The ER did do a cat scan of my brain and abdomen, everything was normal. Chest xrays were normal, echocardiogram showed regurgitaion, urine and blood were normal, ekgs showed the heart issues.
They also said I should follow up with a neurologist

[roadracer]

Roadracer!!! So good to see you, again! Although, I'm so sorry about, the reason!
I remember, you used, to be good friends with a girl from the forums, but, I can't remember her name.

Lauren, I still keep in contact on facebook with the old autism board regulars. I wish everyone still posted there!

I wish I could do something to help, but, I'll keep you in my thoughts & prayers!

Thank you

[joy]

Roadracer, the awesome picture taker, I remember you for sure. Godd to hear from you but sad you are having dificulties. I hope the time passes fast until you see the heart doctor. It is a scary thing of that I am certain. Please stay in touch with us and let us know how you continue doing.

Please follow what tic chic - Jeannie said about returning to ER if you need to. We care and hope you get the follow up you need.

[roadracer]

Seen a doctor today, and getting really frustrated, especially at my parents. They think all heart conditions are the same thing, they dont know the difference between any of them and lump them all together. They keep telling people information that is not even remotely true. So now it has gone around the gossip mill, and people jump to totally false conclusion. If I have to hear another person tell ME "your heart condition..." grrrr

The doctors visit was extremely frustrating, but at least I accomplished some stuff. The doctor ignored half of my symptoms, and made some wild speculations to the cause of my issues, although did admit that he didn't know what was going on.
The good thing was that he had a whole list of tests that he wants me to have done, tests that I should have had done ages ago. This makes me happy that I might finally get some answers to some of my problems. To have the tests done I need to get over the hurdle of getting medical assistance, and the doctor seemed sure that I would be able to get help if I reapply

So now I just need to wait, and in 4 weeks I might have a dx

[Ponygirl]

Keeping fingers and every other crossable part, crossed for you!!!

Phyllis

[Kristen (ColeysMom)]

Hi Todd,

I'm so sorry to hear about this!

Sounds like you've got a Dr paying attention right now...wait on the results and take things one step at a time...and absolutely go to the ER if you need to!

Keep us posted,

KJ

[joy]

I wish every newborn baby could be tested for that long QT syndrome myself. I am glad you are taking it serious if they have said that you have it Todd. I wish your parents understood more about how varied heart conditions are. Try and not let them frustrate you if you can.

Keep us informed. Doctors are confident you will be okay during this wait. They need time to be accurate perhaps on what they are doing.

I came back to say this much, I think that they know you have it is to your advantage. It is when they don't know about the LQT that there is the biggest danger.

[LaBella]

I hope things get better for you, will keep you in my prayers

[roadracer]

Felt really bad today, I blacked out, didnt know how long, was still having trouble eating, so went back to the ER. They wouldn't do anything, and they basically told me not to come back unless I am dying! They also let me wait in the waiting room for 2 hours! I guess this was all there way of trying to send a message to me.
I didnt eat much yesterday, so today I tried to eat a bit more, had two solid meals and had tons of trouble keeping them down. I threw up part of the one meal 6 hours after I eat it!
I decided to try switching to eating parts of meals threwout the day, its hard getting down more then three bites, but it seems to be helping so far.
The ER wouldnt help or give me any advice on this, that it is something that I would need to talk to my general physician about. The general physician is limited in what he can do until I get medical assistance, assistance being possibly weeks away. I have really low body fat to begin with (being a athlete), so soon I am going to start burning muscle mass, something I seriously need to avoid!
I guess as long as I can keep enough food down in a day, it is something I can deal with

[Buttons2]

might want to consider drinking Ensure-just a thought.

[roadracer]

Feeling much better today, thinking maybe I caught a stomach virus or something that is causing my stomach issues, guess I got to wait and see if it goes away