I figure I would post a warning
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May 27, 2006 at 9:23 am
Hey all,
I figure I would post a warning while I still have anything left. This warning is for Ohio people for sure and probably other states too. When I posted I need help a little while back, lots of people told me to go to the ER. (had the no ramp problem) Things started to get bad again so I called Donald Martians Ambulance Company to take me, only $350.00 one way I have to pay, no problem, yea right.
Because my GBS is getting extremely worse I had to find a hospital with a neurologist that knows a lot about it, cause I am sure it is not helping all the other problems I have. I contacted the ones the American Guillain-Barré Syndrome Foundation International suggested are the best in the area. They said there wait time is at least 3 months, will explain later, so go to ER and they would come see me there that day.
I had the Visiting Nurse Association taking my heart rate, breath and other every week and they were happy I was going so they called the hospital to give them info and have them know some of my troubles. I showed up at the University Hospital of Cleveland ER on early Thursday morning. They took me right back and said they heard from the VNA and the Neurologist office so they had a bunch of test scheduled. HERE IS WHERE THE HELL AND WARNING COMES IN. They asked for my insurance card, all I have is Medicaid, had so many disabilities over the years I am not able to work and no insurance that is anywhere near affordable will accept me.
As soon as they seen it everything changed, I was moved from the room to the hall and no one would answer my questions. They took blood and I did not talk to anyone again for 5 hours. Mind you I showed my meds sheet and told them I was a diabetic and took my meds that morning but ate nothing. My blood sugar was dropping fast and the pain. I told them my tail bone is destroyed from 7 fractures and I can not lie on any surface (except air or water mattress) for more than a hour and need pain pills at least every 6. told them I need a chair.
When they did come back all they did was wrap the one leg and said I would be getting a room sometime soon and I would have to wait for meds and a snack till then. Been to ER’s all over this country and never experienced that. It was almost 2 hours later and when they were pulling me into the bed I warned them again about the tailbone, did not matter it hit so hard I could not stop tearing up. I explained I needed to sit up especially after that and no pills for pain they said go ahead but no time to help, of course I am too weak to do it myself.
They brought me a sandwich, said dinner is over, and a few Tylenol, do nothing like my Percocet. Had to lay there in pain till early morning when an aid said do not tell anyone but she would help. The next day they took me for different test like scan, x-ray and others. Still no pain pills and pulled around onto hard tables with no easiness. Mind you I am not some damn cry baby have lived with that pain for the last 20 years and all will usually be somewhat gentler but not them.
That night a male aid came in and said that because I do not have GOOD insurance they were only doing what the law says and I would probably be out the next day. Sure enough they came in and said here are a few nursing homes to choose one because they could not let me go home, I said screw it and called Donald Martians Ambulance Company to take me home, of course I had to sign legal papers so the hospital would no get in trouble.
Let me explain a few things I knew and have found out. I had called the neurology department to see if one was coming, the recepsonist said she would deny she said it but the whole hospital only accepts people with GOOD insurance so I would not be seen.
I knew why send me to the nursing home, because the bandage would have to be changed twice a day and the pills I needed. And of course there they would never send me back only to “cheaper” places and of course they only let you see their doctor and no specialists. Think I am full of shit, remember I was at 2 for 10 months and have known others who are and have gone through it. When my GBS started to get bad then I wanted to see a specialist neruo that knew something about GBS and my other special doctors but they would not let me.
Everyone who sees me knows I would be better off with daily help but they also learned that they kept screwing up my meds and other stuff so it may be harder but I was doing better at home alone, till the GBS started getting a lot worse the past month.
Back to the insurance stuff, I have heard from my doc’s and nurses that there are several places that do what they did. By law all they have to do is check you and take QUICK care of only the worst problem and send you on. The Cleveland Clinic is another like this, seems where neurologist who know GBS are always at that kind of place.
I will be going to local Southwest General hospital, the one that about killed me cause they never found the GBS, after 15 days Metro did but my docs work at SG and will keep me longer. Will be a little while because my doc is coming personally to do a bunch of tests so I can avoid the ER and be directly admitted. He knows my GBS has gotten worse and sure it is causing some of the others and knows that even once they get better that because of the GBS they will come back eventually. He wants me to get a little better so since I will probably travel out of state to find a GBS knowledgeable neurologist that it may be easier. If your neruo has been helpful and you do not mind see what insurance he takes and if they do not mind out of staters.
Of course will be deeper in debt, still can’t find any place to donate a ramp and have tried to pay for one but they want cash up front. It kills me, these places say that I do not have a known disease like Multiple Sclerosis or disability specific organizations like Amputee Coalition of America or not old enough for State and Area Agencies on Aging. Some have said I make to much, like $1087.00, before taxes, a month is more than enough to live on. Forget food, utilities and medical stuff I must be totally insane. I have been unable to find any more places to contact on the net or phone book so if any one might know one could you please email me at [email]oneeyegeo@earthlink.net[/email] thanks.
Wanted to do this so people that were disabled or in case it happens to come up again they do what they can, like research it now, so they keep a good insurance and/or find out what their hospitals and doctors will accept and what their laws are.
Granted I have lived life harder and more than the average person, most say I am like four people and with the bad luck and rough life can not see how I survive and have smiled, until the GBS I was always able to fight it down and make it work, not always great but hey as long as I get back in the wind. Always tried to do proper things just life puts hurdles in the way I am unable to pass. Just so you understand I am, or was, intelligent. Was 3.80 during regular school and a 4.0 through collage, was always treasured at work by other employees but bosses didn’t cause I would make changes, that worked, and got bonuses and got me wanted by other businesses.
With the GBS I am going backward no matter what I do and it is taking its toll. Do not want people to freak but as far as I care it can end, lost most close friends, around 200 through the states over the years. Like we believed if you go while riding you went happy, now no way to even dream it. Just want to give people the warning or at least some problems that may happen.
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May 27, 2006 at 9:01 pm
george,
the treatment of you is digusting, but i can’t say i am surprized. years ago i finally came to believe the saying, ‘if you want it done right, do it yourself’. humanity is given/done by singular folks. organizations f*** you over often even when you pay. wishing you the best…
gene gbs 8-99
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May 27, 2006 at 9:26 pm
George, Illegal immigrants get better care than you. Thought Cleveland Hospital was tops. We can expect Medicaid and Medicare to get worse . It’s not fair what’s happened to you. Thanks for warning. You are in my prayers. Peggy
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May 28, 2006 at 2:21 pm
Sorry to read your story.
Been there–done that–know EXACTLY how you feel.
All you can do in this “my word aginst your word”, “what’s in it for me”, world we live in today is: #1 win the Lottery, #2 move out of the country–then come back illegally. As was said earlier. Medicare/Medicaid is not gonna get any better–only worse. Hope you get some relief somewhere/somehow. Take care my friend…:( -
May 28, 2006 at 6:40 pm
You have been to hell and back. I really feel for you and am in the same situation as you with medicare and medicaid. It helps if you have a friend or family member who can advocate for you. My mother is a psychologist and a former social worker who helped me with this. They hated us, BUT we were able to ensure that I received proper care (that was when I had private insurance). I shudder to think what they would try to get away with now. Hang in there.
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May 28, 2006 at 6:59 pm
George,
Our best wishes and prayers are with you. Am so sorry about the horrific situation you are in.Some of us are fortunate enough to be married and, thus, have insurance under the auspices of our spouses. Am afraid, though, that the Herbert Hoover self help mindset will hurt more and more people. DocDavid and others from the E.U. countries have pointed out that, while Americans spend more on health care, there is a huge disparity between the medical care for the well to do and for those with fewer financial resources. As has been said before, I’m quite fortunate–Medicare and AARP supplemental insurance have worked well for me.
Regards,
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May 28, 2006 at 9:50 pm
George I am so sorry that you have been treayed this way, what a shameful thing for that hospital to do to you.
I do need to ask you why you called a private ambulance instead of 911? You shouldn’t have to pay a private company to take you to the ER when you are so sick and in need of medical care. That’s what 911 is for. Next time call 911 and the paramedics will get you to the ER.
I hope you find some organization that might be able to help you out.
Also if you family Dr admits you into the hospital, they cannot turn you away.
Have you applied for food stamps, I think you meet the criteria for that, it can’t hurt to try.I wish that I knew how to get you some help, I feel so bad that you are being treated so terrible.
If I find any info that might help, I’ll certainly pass it along to you.
Take care George. -
May 28, 2006 at 10:30 pm
THANKS ALL!!!!
To tired to write much but Brandy did not cal 911 because they only go localy. that is Southwest General where I originaly went and died. The Neruo has no clue about GBS and they are part of University but no communications between the two hospitals.
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May 29, 2006 at 10:12 am
[QUOTE=OneEyeGeo]THANKS ALL!!!!
To tired to write much but Brandy did not cal 911 because they only go localy. that is Southwest General where I originaly went and died. The Neruo has no clue about GBS and they are part of University but no communications between the two hospitals.[/QUOTE]
I had a similar situation when I first got sick and as a result treatment was delayed and I almost died. Many hospitals are clueless when it comes to GBS. -
May 29, 2006 at 10:42 pm
hi george..i am from southeasstern ohio and was treated at Bethesda hospital and Good Samaritan hospital (Genesis) located in zanesville ohio. I had wonderful care. My therapists were great and my doctors were semi knowledgeable. I have no complaints concerning my care and treatment of GBS. there were others in the hospital on medicaid and they received the same care that i did (of course they didn’t have gbs but various other illnesses). I have worked for the welfare system for approximately 20 years and things are getting worse. when i first went off work my kids were on a medical card and things have changed even in that length of time. (2 years). Please don’t give up…we are all family and everyone tries to give advice and help in every way possible. keep plugging away…we are all here for you.
stormy
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June 1, 2006 at 10:42 pm
Absolutely appalling treatment. I am on Medicare, not Medicaid, and have always been treated promptly and properly. I do not know about the hospitals in your area but I go to a hospital that is owned by the Episcopal diocese in Houston. I was even the recipient of some charity funds when I was in the hospital 5 times in 1 year and could not afford the Medicare fee for each time. We also have 2 county hospitals here that outstanding. I hope you can find a better place to receive care. Having GBS is hard enough without being treated like a scab. What happened to human nature and preservation? I guess the almighty dollar is more important to those folks than proper care of their fellow man.
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June 2, 2006 at 11:26 pm
Too much going on and mind is not working……….. I am on Medicare, not Medicaid, too thats why it is bad. Things just getting worse.
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June 3, 2006 at 10:36 am
My best suggestion is to find a hospital that is affliated with a church. Get away from the big corporate hospitals. I have found that the hospitals that are religion based have happier employees.
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June 3, 2006 at 7:45 pm
George,
What an awful ordeal you have been through. I’m so sorry to hear that you have been treated so badly. I really can’t understand how someone can treat another human being like that.
Hang in there. We’re all pulling for you.
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June 8, 2006 at 4:53 pm
I firmly believe each patient needs an advocate upon entering the hospital, particularly if we are too weak to speak and negotiate on our own behalf. If a family member or friend cannot step effectively into this role, then a social worker at the hospital can be an ally in the system that is treating you. Additionally, The Independent Living Center provides nationwide advocacy for the disabled and your local office can assist with such matters.
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June 8, 2006 at 4:58 pm
[QUOTE=OneEyeGeo]Too much going on and mind is not working……….. I am on Medicare, not Medicaid, too thats why it is bad. Things just getting worse.[/QUOTE]
George,
My suggestion to you is that you contact Medicare and report the hospital and staff. Also you can write a letter to the hospital’s administrator and tell them that you intend on letting Medicare know how badly you were treated.
Take care
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June 9, 2006 at 6:53 pm
[QUOTE=linda]I firmly believe each patient needs an advocate upon entering the hospital, particularly if we are too weak to speak and negotiate on our own behalf. If a family member or friend cannot step effectively into this role, then a social worker at the hospital can be an ally in the system that is treating you. Additionally, The Independent Living Center provides nationwide advocacy for the disabled and your local office can assist with such matters.[/QUOTE]
My experience was that hospital social workers advocate for the hospital, not the patient. In all fairness they are over worked and have precious little time for such as undertaking. -
June 19, 2006 at 11:33 am
George,
FYI the head of neuro at the Clev Clinic was let go. The news is the new head that will start in Aug and will make many changes.
When anyone was treated the way you were I would report it first to the Medical director of the hospital then your ins. co.
SW general and Metro have had a few new cases and contacted me for info. Maybe they will change their care.
I know how hard it has been to get you a ramp. I’m still in contact with a few people, Home Dep is one. They haven’t turned me down but the process is as slow as mud. Don’t give up and neither will I.
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June 19, 2006 at 11:49 am
geo,
kass is one of the most dedicated & hard working gals i have ever met. never give up. never give in. take care. be well.
gene gbs 8-99
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June 21, 2006 at 11:04 am
Gene,
Now I have that I work in writing I’ll copy it for Rick and prove it to him! :rolleyes:
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June 21, 2006 at 11:09 am
Nice job Gene now Kass has a big head 🙂
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June 21, 2006 at 11:19 am
jerimy,
you know me. always willing to lend a helping hand, do good wherever i can – lol. take care. be well.
gene gbs 8-99
in numbers there is strength -
June 23, 2006 at 11:20 pm
Hi George; Sorry to here of your treatment at what should be an excellent facility. Unfortunately I hear more bad than good about it !!! Stormy is right Zanesville has great hospitals. I was treated at Mount Carmel East in Columbus and got great care there. (but that was a few years ago) I’m here in Chillicothe not a great selection here either…. It sounds like from this forum there are enough GBS patients in Ohio we should have our own hospital.:D
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July 4, 2006 at 6:25 am
Has anyone heard from George ??
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July 4, 2006 at 11:35 pm
judy, i email george quite abit. the last email he sent me he was very depressed and is just waiting for the end. he hasn’t answered my last email, i will be calling him this week, i think. take care.
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December 2, 2006 at 2:17 pm
Cher,
Just wondering if you’ve heard anything from George in the last few months? He’s been on my mind a lot!
Shan
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December 2, 2006 at 3:09 pm
Shan,
He has been on my mind a lot too over the past few months.
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December 2, 2006 at 11:24 pm
Hey George, you are in our thoughts and prayers, I hope everything is well with you. We miss you.
Jerimy
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December 3, 2006 at 5:55 pm
Jer – I couldn’t have said it better myself.
Shan
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December 3, 2006 at 9:44 pm
Geo,
I second Jerimy’s wishes, and hope you will have some relief soon.
Best wishes,
Suzanne
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December 3, 2006 at 11:48 pm
George has been on my mind too. You feel so utterly helpless when you can’t do anything to help. Maybe George can feel the cyber hugs we send him.
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December 4, 2006 at 12:03 am
No i haven’t heard anything since this past summer. alot was going on with him, i’ve been thinking alot about him also. well more like worried i guess, the last email wasn’t up lifting like he usually sounded, it was very disturbing actually. i will be sending him a card this week though, and hopefully he will email me back, if his health allows him to do so, he was pretty bad according to his last email. i wish i had better news, sorry.:(
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December 4, 2006 at 4:07 am
Hugs and prayers are with you, George 🙂
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December 5, 2006 at 8:09 pm
We love you, George and will be praying for you.
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December 10, 2006 at 11:50 pm
shan, and everybody, george is home now, he emailed me on the 3rd(i just remembered to check that address:o ) he will give me more details as soon as he gets things together at home. i told him everyone here has been asking about him.:)
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December 11, 2006 at 9:44 am
Yay! Thanks for letting us know, Cher! I’m so happy! 🙂
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February 28, 2007 at 4:29 pm
Where I live, 911/EMTs will transport, but we still get a bill. For those of you who live in other areas, are your 911-ambulance rides free???
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February 28, 2007 at 11:06 pm
hi cat, in my area, yes as long as you are transported als(advanced life saving). if you are transported basic life saving(bls) then you either have to pay their price or whatever your insurance doesn’t cover-in my case i pay $50 when transferred from the hospital near me to one where my neuro is-20 mins away. sometimes if i can talk the hospital near me to defer me to the farther hospital i go in lifesquad-als for insurance coverage-saving me $50.
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March 5, 2007 at 1:26 am
Illegal ALiens are draining SSI and SS as fast as they can. We have come to the pits in this country. Talk of family values and christianity from our man in the white house is a sad joke. A country who treats it lower class of wage earners the way we are being treated is immorality at its best and on judgement day these family value people who cheated to get into office will have alot of answering to face up to right before they are cast into the hottest hell. Lets take America back folks and make it what it is supposed to be. I put 8 gallons of gasoline in the car yesterday and it cost 20 dollars. Now, how is that for kicking the lower wage earners while they are down. 🙁 I don’t care much for these rich DRS who are happy as a lark while the stock market rides high and we ride lower and lower. Prayers to you oneeyegeo and to the rest of the lower income earners on this thread.
Drummer
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