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um..this is my husband and here and now current.....going on right now.

- In , Gardenia blossoms <stillbreathing29@...> wrote:

>

>

> Hi Dreamer,

>

> Sorry hear about what happened with your father and the VA.

>

> I used to see programs about that. Even though I haven't served in the

military nearly everyone in my family, especially the men served. Many of the

women too.

>

> So, it hurts me to see how they are treated after serving our country.

>

> That said, I thought all of that was behind us because a couple of weeks ago

I saw a program that showed that VA hospitals were greatly improved and now the

model for all hospitals to go by.

>

> Maybe the improvements have just started and has to make its rounds. But

you know we pay $600/mo for health insurance, which I feel is expensive. I

still get similar care as what your dad did. I never want to be an inpatient

again. I am happy your dad had you there. I was really on my own a lot of the

times and they did all kinds of tests and xrays, procedures. I had tubes in my

neck and back of my arms, etc. My bill is $90,000+ from all of the procedures

they did during my 2-week inpatient stay. Food was held for 3 or 4 days.

Nothing by mouth not even have ice, but I did anyway as soon as I could. That's

how it done unfortunately until the patient is stabilized. but the pcn part,

that's scary. take care.

>

> best wishes.

>

>

>

>

> peace and healing,

> Ebony

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1 & cent;/min.

>

>

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I understand the medical stuff - I am a long term care nurse. But the problem

was the staff at hosp was not um, staying at task and doing anything about

getting anything done......and problem was I had made it clear to hosp staff

that I was sidetracked at another hosp 5 hours or more away with our young son

and his emergency eye repair surgery....but my dh was mentally incompetant and

incappable and non idependant.

- In , Gardenia blossoms <stillbreathing29@...> wrote:

>

>

> Hi Dreamer,

>

> Sorry hear about what happened with your father and the VA.

>

> I used to see programs about that. Even though I haven't served in the

military nearly everyone in my family, especially the men served. Many of the

women too.

>

> So, it hurts me to see how they are treated after serving our country.

>

> That said, I thought all of that was behind us because a couple of weeks ago

I saw a program that showed that VA hospitals were greatly improved and now the

model for all hospitals to go by.

>

> Maybe the improvements have just started and has to make its rounds. But

you know we pay $600/mo for health insurance, which I feel is expensive. I

still get similar care as what your dad did. I never want to be an inpatient

again. I am happy your dad had you there. I was really on my own a lot of the

times and they did all kinds of tests and xrays, procedures. I had tubes in my

neck and back of my arms, etc. My bill is $90,000+ from all of the procedures

they did during my 2-week inpatient stay. Food was held for 3 or 4 days.

Nothing by mouth not even have ice, but I did anyway as soon as I could. That's

how it done unfortunately until the patient is stabilized. but the pcn part,

that's scary. take care.

>

> best wishes.

>

>

>

>

> peace and healing,

> Ebony

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1 & cent;/min.

>

>

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Share on other sites

Guest guest

Ok, lets see, my husband has delayed onset combat PTSD from Nam that causes him

to have catatonic fugue states, profound depression, passive suicide tendancies,

psychosis, dementia. He also has Agent Orange related cancer- brain, lungs,

kidneys, stomach. He also has a spine problem, his spine is deterorating..and

he has heart disease, poor circulation and emphysema. SO he was told to have an

angio and we took him for that. He is allergic to pcn and they went to start

pcn IV before the procedure. I said wait, he has anaphylactic reaction, you

cannot give him that. They said that allergy was not listed in his chart. I

said well, he is allergice, you have to find out, do not give him that. SO.they

stopped, but they did not call his primary, they held him in pre op doing

nothing for hours (like 12 hours?) everyone thinking, I guess, that someone else

would find out what to do. None bothered, so after 12 hours they sent him up to

a room. They withheld his trays becuz eveyrone thought they would be taking him

back to do the angio-- so- he was in this holding pattern for 4 days and in the

end noone ever did get the info needed, but the 2nd day the staff could not even

figure out why he was there. But they refused to talk to me and his primary

would not return phone calls. On the 5th day, since I had our kids with me, had

them out of school (The VA hosp doing the angio is not our home VA hosp, and we

had to travel to get there) SO I talked to hosp staff who would not discharge

him, but also would not try harder to find out why he was still inpatient- they

told me to go. No sooner did I get home (It was a several hour trip) than they

called and said come back and get him. Noone ever has yet determined WHY they

never finished. And now he is back on the 2 yr wait list to get his angio.

SPerately at our home VA, he had a procedure done on prostrtae and bladder - he

got sepsis as a complication. (a couple months ago) AT the time I was hours

away with my mother who had brain cancer surgery. My oldest child is 17 and is

mentally challenged, my middle child is VERY active in community service, and

school and my youngest child is 10 with a seizure disorder and cerebal palsy.

My older kids and dh were supposed to sort of take care of each other hwile I

was with my mom. But dh got extremely ill from the procedure he had, and went

into respiratory distress from the sepsis. I tried calling his uro and primary

as soon as my kids told me somethng was " wong with dad " Sadly at the same time,

Ihad sole responsibility in her home of my invalid mother (who has since passed)

and I was seveeral hours from home. I got home, the docs never returned my

calls, and transported my dh to the VA becuz he was near death.

They took hours arguing with me there before they admitted him...Finally they

did admit him and then argued with me wanting to know why I did not get him

there sooner. BUT they also could not rech his uro or primary.

Problem was, the same time, my youngest child had an accident and poked out his

eye. I had to leave my very confused, non oriented, non alert dh to go get my

son, and our ER sent our son 5 hours opposite direction from hosp where my

husband was. WHere my son underwent 9 hours of intense surgery to try to

rebuild and salvage his eye. Meanwhile by phone I was trying depserately to

find someone to supervise my oconfused brain surgery mother.and my other 2 kids.

SO, I called the VA hosp and tried to talk to the staff there to make them aware

a medical crisis was also going on with our son, and to give them my cell so

they could keep me up to date on my DH.

I also continued to try to call dh primary doc, and uro...but never did get them

on the phone.

I was still with my son so far away, and tried to talk tomy dh on phone but he

was so demented, so out of touch with reality, he did not know where he was or

why or anything. I tried to talk to his nursing supervisor, but she refused to

speak to me.

Next thing I know, I called home to check on things at home and found out the

VA hosp had arranged with some other ptient being discharged, that patient drove

my dh home- in winter- in a hospital gown-----some stranger we did not know- and

eleft my confused, non alert dh heere at our house. He did not even have eys,

and sat on porch till kids got home from school to let him in. His meds had

been totally re-worked and dh had no idea what meds he was to take or why, - no

presence of mind for anything.....and I was still at the other hosp with our

son, unaware my dh was not still in ICU where he had been just hours before.

My older kids called me..to notify me. I called VA to try to find out what was

going on, discharge instructions, med schedule, follow up care, but-- again I

got nowhere. I got voicemails to leave messages, no return calls, nothing.

Becuz I am a nurse, my sons surgeon permitted me to bring my son home early- so

I could check on my dh......

this was this year, very recently- here and now.

ANd yes, while awaiting my dh benefits to start up viz VA, I was sick with my

RA, and our family had no medical coverage at all, 2 disabled kids....

We could ntot get Medicaide becuz the VA benefits when they kicked in, the cash

compensation, it bumped us $20 per year up over the income cutoff guiideline for

Medicaide eligibility. I tried to get something called CHIPS, catastrophic

coverage thru the state for uninsurable persons, but, the premiums were going to

be $600 for my dtr per month, $500 for myself and $400 for my son, plus my

middle child did not qualify as she is not uninsurable. Worse, the coverage for

neurological disorders was very minimal, and would have left us with more co

pays than would even be possible even if there were not an emergency. Plus,

well the premiums were more than our income.

My Medicare finally kicked in, but it still left our kids uninsured.

It took quite a battle to FINALLY get what my dh had been due, ALL his VA

benefits. We fought for almost 15 years to get them, and it was a hard hard

battle.

It is recently in the media, IL has not been doing their veterans disbility

claims properly for years.

Ours was made worse by our having 2 disabled kids and by my disability.

Even once my Medicare did kick in, it was little help for meds, as I am sure you

know.

ANd more sad, there is rumors that my 2 kids disabilities might possibly also be

related to dh exposure to Agent Orange, but VA is not yet formally accepting

responsibility for it. And my kids disabilities make it impossible for them to

even get insurance privately.

ANd I have NO idea why it takes 2 years to reschedule his new angio...or why

they sent him home when he was so connfused, electrolyttes dangerously out of

balance etc or what they thought they were doing sending a person in such frail

condition anywhere with a total stranger- in a hosp gown in winter to a home

where noone responsible was even home at all.

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My goodness dreamer, no wonder you have trouble quitting smoking. I am surprised

you don't take up drinking as well. I wish with all my heart I was in a

position to help you. That is interesting that the kids problem could be

associated with your dh's illness. I cannot imagine how so many fine men,

risking their lives for us, could end up without the proper care they so

deserve. Do you have anyone at all working on getting some help for your family.

Hugs

June

----- Original Message -----

From: dreamer_plus

Ok, lets see, my husband has delayed onset combat PTSD from Nam that causes

him to have catatonic fugue states, profound depression, passive suicide

tendancies, psychosis, dementia. He also has Agent Orange related cancer-

brain, lungs, kidneys, stomach. He also has a spine problem, his spine is

deterorating..and he has heart disease, poor circulation and emphysema. SO he

was told to have an angio and we took him for that. He is allergic to pcn and

they went to start pcn IV before the procedure. I said wait, he has

anaphylactic reaction, you cannot give him that. They said that allergy was not

listed in his chart. I said well, he is allergice, you have to find out, do not

give him that. SO.they stopped, but they did not call his primary, they held

him in pre op doing nothing for hours (like 12 hours?) everyone thinking, I

guess, that someone else would find out what to do. None bothered, so after 12

hours they sent him up to a room. They withheld his trays becuz eveyrone

thought they would be taking him back to do the angio-- so- he was in this

holding pattern for 4 days and in the end noone ever did get the info needed,

but the 2nd day the staff could not even figure out why he was there. But they

refused to talk to me and his primary would not return phone calls. On the 5th

day, since I had our kids with me, had them out of school (The VA hosp doing the

angio is not our home VA hosp, and we had to travel to get there) SO I talked to

hosp staff who would not discharge him, but also would not try harder to find

out why he was still inpatient- they told me to go. No sooner did I get home

(It was a several hour trip) than they called and said come back and get him.

Noone ever has yet determined WHY they never finished. And now he is back on

the 2 yr wait list to get his angio.

SPerately at our home VA, he had a procedure done on prostrtae and bladder -

he got sepsis as a complication. (a couple months ago) AT the time I was hours

away with my mother who had brain cancer surgery. My oldest child is 17 and is

mentally challenged, my middle child is VERY active in community service, and

school and my youngest child is 10 with a seizure disorder and cerebal palsy.

My older kids and dh were supposed to sort of take care of each other hwile I

was with my mom. But dh got extremely ill from the procedure he had, and went

into respiratory distress from the sepsis. I tried calling his uro and primary

as soon as my kids told me somethng was " wong with dad " Sadly at the same time,

Ihad sole responsibility in her home of my invalid mother (who has since passed)

and I was seveeral hours from home. I got home, the docs never returned my

calls, and transported my dh to the VA becuz he was near death.

They took hours arguing with me there before they admitted him...Finally they

did admit him and then argued with me wanting to know why I did not get him

there sooner. BUT they also could not rech his uro or primary.

Problem was, the same time, my youngest child had an accident and poked out

his eye. I had to leave my very confused, non oriented, non alert dh to go get

my son, and our ER sent our son 5 hours opposite direction from hosp where my

husband was. WHere my son underwent 9 hours of intense surgery to try to

rebuild and salvage his eye. Meanwhile by phone I was trying depserately to

find someone to supervise my oconfused brain surgery mother.and my other 2 kids.

SO, I called the VA hosp and tried to talk to the staff there to make them

aware a medical crisis was also going on with our son, and to give them my cell

so they could keep me up to date on my DH.

I also continued to try to call dh primary doc, and uro...but never did get

them on the phone.

I was still with my son so far away, and tried to talk tomy dh on phone but he

was so demented, so out of touch with reality, he did not know where he was or

why or anything. I tried to talk to his nursing supervisor, but she refused to

speak to me.

Next thing I know, I called home to check on things at home and found out the

VA hosp had arranged with some other ptient being discharged, that patient drove

my dh home- in winter- in a hospital gown-----some stranger we did not know- and

eleft my confused, non alert dh heere at our house. He did not even have eys,

and sat on porch till kids got home from school to let him in. His meds had

been totally re-worked and dh had no idea what meds he was to take or why, - no

presence of mind for anything.....and I was still at the other hosp with our

son, unaware my dh was not still in ICU where he had been just hours before.

My older kids called me..to notify me. I called VA to try to find out what

was going on, discharge instructions, med schedule, follow up care, but-- again

I got nowhere. I got voicemails to leave messages, no return calls, nothing.

Becuz I am a nurse, my sons surgeon permitted me to bring my son home early-

so I could check on my dh......

this was this year, very recently- here and now.

ANd yes, while awaiting my dh benefits to start up viz VA, I was sick with my

RA, and our family had no medical coverage at all, 2 disabled kids....

We could ntot get Medicaide becuz the VA benefits when they kicked in, the

cash compensation, it bumped us $20 per year up over the income cutoff

guiideline for Medicaide eligibility. I tried to get something called CHIPS,

catastrophic coverage thru the state for uninsurable persons, but, the premiums

were going to be $600 for my dtr per month, $500 for myself and $400 for my son,

plus my middle child did not qualify as she is not uninsurable. Worse, the

coverage for neurological disorders was very minimal, and would have left us

with more co pays than would even be possible even if there were not an

emergency. Plus, well the premiums were more than our income.

My Medicare finally kicked in, but it still left our kids uninsured.

It took quite a battle to FINALLY get what my dh had been due, ALL his VA

benefits. We fought for almost 15 years to get them, and it was a hard hard

battle.

It is recently in the media, IL has not been doing their veterans disbility

claims properly for years.

Ours was made worse by our having 2 disabled kids and by my disability.

Even once my Medicare did kick in, it was little help for meds, as I am sure

you know.

ANd more sad, there is rumors that my 2 kids disabilities might possibly also

be related to dh exposure to Agent Orange, but VA is not yet formally accepting

responsibility for it. And my kids disabilities make it impossible for them to

even get insurance privately.

ANd I have NO idea why it takes 2 years to reschedule his new angio...or why

they sent him home when he was so connfused, electrolyttes dangerously out of

balance etc or what they thought they were doing sending a person in such frail

condition anywhere with a total stranger- in a hosp gown in winter to a home

where noone responsible was even home at all.

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Guest guest

mmmmmm, I punt, pray and delude myself that I will be back up and handling thing

the same way I did when I was 25, LOL.

Sadly I went from extreme immaculate with home to .well, I think, literally, we

need a bobcat or mini bulldozer here these days. Actually, mowing is no longer

a concern, the grass kinda.died from too many weeds, not enough TLC.so most of

it is dead. When I cannot walk thru the house, I stay in my bedroom....It used

to bother me more than it does now, I have, for self preservation, become a

mster of ignoring things. Now I mostly just focus on who needs to be where

when. That keeps me plenty busy, and being creative about how to accomlish it.

I know I prolly came out today sounding more down than I really am. every once

in awhile it gets to me, but most of the time I am busy being busy or silly. I

have been on my own and self reliant since I was 12 and most of the time I do

manage to be content and happy. It just seems like when I get to this group

here is the " bad days "

Thank you for your kind thoughts. :-)

(it was a hard morning around here)

- In , " June Dixon " <juner24@...> wrote:

>

> My goodness dreamer, no wonder you have trouble quitting smoking. I am

surprised you don't take up drinking as well. I wish with all my heart I was in

a position to help you. That is interesting that the kids problem could be

associated with your dh's illness. I cannot imagine how so many fine men,

risking their lives for us, could end up without the proper care they so

deserve. Do you have anyone at all working on getting some help for your family.

> Hugs

> June

> ----- Original Message -----

> From: dreamer_plus

>

>

> Ok, lets see, my husband has delayed onset combat PTSD from Nam that causes

him to have catatonic fugue states, profound depression, passive suicide

tendancies, psychosis, dementia. He also has Agent Orange related cancer-

brain, lungs, kidneys, stomach. He also has a spine problem, his spine is

deterorating..and he has heart disease, poor circulation and emphysema. SO he

was told to have an angio and we took him for that. He is allergic to pcn and

they went to start pcn IV before the procedure. I said wait, he has

anaphylactic reaction, you cannot give him that. They said that allergy was not

listed in his chart. I said well, he is allergice, you have to find out, do not

give him that. SO.they stopped, but they did not call his primary, they held

him in pre op doing nothing for hours (like 12 hours?) everyone thinking, I

guess, that someone else would find out what to do. None bothered, so after 12

hours they sent him up to a room. They withheld his trays becuz eveyrone

thought they would be taking him back to do the angio-- so- he was in this

holding pattern for 4 days and in the end noone ever did get the info needed,

but the 2nd day the staff could not even figure out why he was there. But they

refused to talk to me and his primary would not return phone calls. On the 5th

day, since I had our kids with me, had them out of school (The VA hosp doing the

angio is not our home VA hosp, and we had to travel to get there) SO I talked to

hosp staff who would not discharge him, but also would not try harder to find

out why he was still inpatient- they told me to go. No sooner did I get home

(It was a several hour trip) than they called and said come back and get him.

Noone ever has yet determined WHY they never finished. And now he is back on

the 2 yr wait list to get his angio.

>

> SPerately at our home VA, he had a procedure done on prostrtae and bladder -

he got sepsis as a complication. (a couple months ago) AT the time I was hours

away with my mother who had brain cancer surgery. My oldest child is 17 and is

mentally challenged, my middle child is VERY active in community service, and

school and my youngest child is 10 with a seizure disorder and cerebal palsy.

My older kids and dh were supposed to sort of take care of each other hwile I

was with my mom. But dh got extremely ill from the procedure he had, and went

into respiratory distress from the sepsis. I tried calling his uro and primary

as soon as my kids told me somethng was " wong with dad " Sadly at the same time,

Ihad sole responsibility in her home of my invalid mother (who has since passed)

and I was seveeral hours from home. I got home, the docs never returned my

calls, and transported my dh to the VA becuz he was near death.

> They took hours arguing with me there before they admitted him...Finally

they did admit him and then argued with me wanting to know why I did not get him

there sooner. BUT they also could not rech his uro or primary.

> Problem was, the same time, my youngest child had an accident and poked out

his eye. I had to leave my very confused, non oriented, non alert dh to go get

my son, and our ER sent our son 5 hours opposite direction from hosp where my

husband was. WHere my son underwent 9 hours of intense surgery to try to

rebuild and salvage his eye. Meanwhile by phone I was trying depserately to

find someone to supervise my oconfused brain surgery mother.and my other 2 kids.

> SO, I called the VA hosp and tried to talk to the staff there to make them

aware a medical crisis was also going on with our son, and to give them my cell

so they could keep me up to date on my DH.

> I also continued to try to call dh primary doc, and uro...but never did get

them on the phone.

> I was still with my son so far away, and tried to talk tomy dh on phone but

he was so demented, so out of touch with reality, he did not know where he was

or why or anything. I tried to talk to his nursing supervisor, but she refused

to speak to me.

> Next thing I know, I called home to check on things at home and found out

the VA hosp had arranged with some other ptient being discharged, that patient

drove my dh home- in winter- in a hospital gown-----some stranger we did not

know- and eleft my confused, non alert dh heere at our house. He did not even

have eys, and sat on porch till kids got home from school to let him in. His

meds had been totally re-worked and dh had no idea what meds he was to take or

why, - no presence of mind for anything.....and I was still at the other hosp

with our son, unaware my dh was not still in ICU where he had been just hours

before.

> My older kids called me..to notify me. I called VA to try to find out what

was going on, discharge instructions, med schedule, follow up care, but-- again

I got nowhere. I got voicemails to leave messages, no return calls, nothing.

> Becuz I am a nurse, my sons surgeon permitted me to bring my son home early-

so I could check on my dh......

> this was this year, very recently- here and now.

>

> ANd yes, while awaiting my dh benefits to start up viz VA, I was sick with

my RA, and our family had no medical coverage at all, 2 disabled kids....

> We could ntot get Medicaide becuz the VA benefits when they kicked in, the

cash compensation, it bumped us $20 per year up over the income cutoff

guiideline for Medicaide eligibility. I tried to get something called CHIPS,

catastrophic coverage thru the state for uninsurable persons, but, the premiums

were going to be $600 for my dtr per month, $500 for myself and $400 for my son,

plus my middle child did not qualify as she is not uninsurable. Worse, the

coverage for neurological disorders was very minimal, and would have left us

with more co pays than would even be possible even if there were not an

emergency. Plus, well the premiums were more than our income.

> My Medicare finally kicked in, but it still left our kids uninsured.

> It took quite a battle to FINALLY get what my dh had been due, ALL his VA

benefits. We fought for almost 15 years to get them, and it was a hard hard

battle.

> It is recently in the media, IL has not been doing their veterans disbility

claims properly for years.

> Ours was made worse by our having 2 disabled kids and by my disability.

> Even once my Medicare did kick in, it was little help for meds, as I am sure

you know.

> ANd more sad, there is rumors that my 2 kids disabilities might possibly

also be related to dh exposure to Agent Orange, but VA is not yet formally

accepting responsibility for it. And my kids disabilities make it impossible

for them to even get insurance privately.

>

> ANd I have NO idea why it takes 2 years to reschedule his new angio...or why

they sent him home when he was so connfused, electrolyttes dangerously out of

balance etc or what they thought they were doing sending a person in such frail

condition anywhere with a total stranger- in a hosp gown in winter to a home

where noone responsible was even home at all.

>

>

>

>

>

>

>

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Guest guest

Dreamer -

What a nightmare you all have been going through! 15

years!!! I find that truly terrible that a military

vet, with medical problems due to exposure of Agent

Orange during this military assignment to Viet Nam,

had had to go through so much he** to get treatment,

and to get the benefits due to him. My cousin was

also in Nam and also exposed to AO, and has had many

medical problems because of this.

To think that your children's problems are possibly

related to the AO exposure your husband suffered in

Nam - how horrible is that? I have read, though, that

there have been other families affected in this way

and it is heartbreaking. They should be covered by VA

medical too, if this can be proven. Does the military

now recognize that Agent Orange is a proven medical

liability for those vets exposed to it, and that there

children may suffer from it as well? I know when my

cousin was first fighting for his treatment, the

military denied everything. I hope it is better now.

You have been through so much, and I am so sorry for

the way your husband was treated. Driven home by a

patient and left on the porch in his hospital gown??

It's hard even imagine such a thing, let alone know

that it happened, I really am so sory for you guys.

That the VA would act this way - wow, what an

eye-opener - I think that anybody who has served in

our military should have first class care when they

need it, it's the least the country can do for them.

How is your husband now? Is the angio still two years

away? There must be a terrible backlog of patients,

and more families like yours who are going through

this. Is there some kind of group that you can get in

touch with to help people to manage to find their way

through the VA system? If not, there sure should be!

I will be keeping you in my prayers.

Kathe in CA

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

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