Old 10-19-2011, 05:44 PM #1 (permalink)
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Default What else now... I cant take any more.

Hubby had a "issue" this Saturday. He told me that he wanted to go to his chair and sit in teh livingroom for a while, to get a change of senery. No problem. I put him in his chair, and made sure he had everyhthing he needed. His father came in the room and they were watching TV. I took the "free" time that gave me to take a shower and do somethinsg for myself. After the shower I went to check on him just cuz i had that little feeling, and I find, he is passed out, eye fixed and dialited, and not breathing. I freaked out. I threw his chair back and opened an air way was going to do CPR when he came around. His father just sat there and when i yelled at him to call 911 he was slow and said he didn't even see what happened. HOW THE HELL are you less then 5 feet away the same room and not notice? The paramedics came and took him off to teh hospital. This was yet another awful experiance. After 7 hours in the ER we find out that he has a high white cell count, staff, and no reason that he passed out. They admitted him. the next day, I find out that he didn't have staff it was a bad test. Ok, great! but no reason for eth high white cell count. The doctor the we had in admitting, siad they wanted to test him for GBS, and maybe start him on IVIG. They also did a swollow test and he failed, so he didn't get anything to eat from Saturday to monday, this is not OK! I raised some hell and they feed him. A new Doctor is not assigned to his case and refuses to do the GBS test and IVIG. She said we could not afford it, how the hell does she know what we can afford, and I didn't know that medical care was baised on what teh doctor thought you could afford. GRRRRRRRR! I had asked to be transfered to a hospital in Dallas, that has a clinic ajoined to the ALS/MDA... UTSW refused the transfer. Said they could not take him as out pat. Well how help is that, when I can't put him in his chair cuz he may pass out again? or let alone I do not have a van that I can transport him in myself. We find out he has 3 buldging discs in his back and he has had pain from that for years, but they are saying they can't tell if it is the ALS that is giving him the pain or the discs. I can tell you its the disc but who am I, Im not a Doctor, just teh person who has spent the last 10 years with him and careing for him 24 hours a day for the last year! They told me he might couyld have the disc surgery but they wanted to do some reaserch to make sure the ALS wont affect it. I hate the fact that every doctor blames everything on ALS... ohh your bleeding.. thats ALS, oh you have pain ... thats ALS, ......damnit! I am so sick of it. Why won't they listen, why won't they treat him? why wont they see him not the ALS!
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Old 10-19-2011, 07:14 PM #2 (permalink)
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Default Re: What else now... I cant take any more.

I'm sorry! I forget what they call them, maybe a case manager? Can you tell the hospital staff you want to speak with someone in charge of his "case?" If they won't cooperate, tell them you will then need to speak to the administrator of the hospital.

Are they going to treat him or discharge him? If they discharge him (will they transport him home?), can you turn around a bit later and have him transported to the other facility?

I'm not having the exact same problems to the extent you are, but I know what you are talking about. No one seems to want anything to do with treating a pALS!

I hope you will let us know what happens!

Maybe someone else with more experience will have some ideas for you!
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Old 10-19-2011, 07:51 PM #3 (permalink)
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Default Re: What else now... I cant take any more.

HI

Wow, what a nightmare. First, Gillian Barre is one of the things that should have been ruled out before ALS was diagnosed. Wasn't it? Second, anyone can transfer hospitals--as long as he goes to a hospital that accepts his insurance. I'm assuming with ALS he's on disability and medicare. If not, he certainly should be.

Contact the ALSA in your area and talk with a counselor there and see if they can advocate for him and you. Something obviously has been overlooked and someone isn't doing their job.

Doesn't he have his own physician that can coordinate his care for him? I hate it when people seem to just fall though the cracks

Has he had a PFT done to see if his respiratory muscles are working? Someone passing out would not cause their breathing to stop--unless it was respiratory related in the first place.

Did they do an MRI or CT to be sure he didn't have a stroke?

I hope you can get things sorted out!
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Old 10-19-2011, 10:49 PM #4 (permalink)
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Default Re: What else now... I cant take any more.

Call your the ALS Clinic ASAP. You're being messed around. Your husband may have passed out because he might be storing C02. Just a thought. I hope things work out soon for you both and sorry you're going through this.
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Old 10-20-2011, 06:12 PM #5 (permalink)
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Default Re: What else now... I cant take any more.

Pandora, how are things? Any resolution?
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Old 10-20-2011, 10:47 PM #6 (permalink)
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Default Re: What else now... I cant take any more.

Pandora..kind of going through the same thing with my mom. We take our mom to emergency every month or so because she becomes irresponsive. Most of the times it has been nothing - they say usually 'dehydrated'.

Hope it gets better for you.
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Old 10-23-2011, 10:08 PM #7 (permalink)
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Default Re: What else now... I cant take any more.

I know how you feel. We went to the local ER to get my husband's throat suctioned out. The respiratory therapist that did it performed the suctioning twice, dismissing the results both times, even though it had started his gag reflexes working after the second try, resulting in total relief....the therapist did not stick around long enough to help. I grabbed gloves, put them on, and helped my husband clear his mouth of all he had gagged up. What kind of treatment is that? My mother always said "God helps those who help themselves." I truly believe the same being a caregiver of this disease. Do your own research, educate yourselves, and take charge of the situation. Tell them what you expect of them, but always be willing to listen, as they are ultimately the MDs. sometimes they know more, but not always. Now, mind you, I work for the same facility that provides his care.....but I am still not blind to the truth. Knowledge is power. Live, learn, and be informed so you are not at the mercy of others.
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Old 11-13-2011, 05:21 PM #8 (permalink)
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Default Re: What else now... I cant take any more.

I am really sorry to hear about what you are going through. That being said, Hospitals, Doctors and therapists nvever want to listen to the family of PALS. You practically have to get the chief of staff, director of nursing involved. They don't seem to know anything more about ALS other than it's fatal. They write our loved ones off. Well, I for 1 will not stand for it. I am that super squeaky wheel. The one thing I have learned through this is how to be an advocate. Hang in there and climb that chain of command, threaten to get the media involved, and call your local ALS chapter.
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