Re: IT Morphine Trial- Ups and Downs

[Guest guest]

I really feel for you! What a horrible experience! I am so sorry to hear that

you had to deal with so much pain and incompetence while in the hospital!

I started in nursing in the 70s and went into psychology instead because I felt

that the emphasis was not on the patient as an individual. Sadly I don't think

it has changed that much.

I would have reacted the same way after surgery!! I have had nerve blocks and

it is an awful feeling until it wears off. I had one in my shoulder and I knew

how my mom had felt after her stroke.

Did you check with Medtronics about a doctor in your area? I deal with them

having an insulin pump. They are have been pretty good. There should be a

representative for your area.

Do you have a teaching hospital specializing in neurology in your area?

Which part of PA are you in? I'm in the Lehigh Valley (eastern portion of

state). If you live near Phili, I know Jefferson Hospital has a good

neurology department.

I am glad that your wife was able to speak for you. I have found that the more

you get upset about your pain with doctors, the less they are willing to help.

I had that happen once at pain management. The doctor wouldn't even listen to

what my husband had to say.

Please let us know how you are making out. If I can be of any help, please feel

free to e mail me.

Gentle hugs, Tami

> wrote:

> I've been putting off writing this post because I have been beyond

> overwhelmed.

> My neurosurgeon absolutely will not manage the pump and neither will

> my pain management doctor.

[Guest guest]

Wow. That unbelievable. I hope somebody with brains get involved with your case.

Ask for the hospital social worker.

Ellen-Hangin in

> M

> I've been putting off writing this post because I have been beyond

overwhelmed.

[Guest guest]

> Steve wrote:

> I should to the hospital to get a blood patch, but I just can't bring myself

to actually go through with it.

Steve,

Go IMMEDIATELY for a blood patch as infection makes its way into the cerebral

space if you do not. It is a simple procedure and does not hurt.

I don't understand what you had to not have pain as you then stated you have

pain. Usually, right after surgery, you still have the effect of the anesthesia

that helps with pain.

I also experienced some of the same items you mentioned. Before any pain

patients are hospitalized, they need to make sure there pain medications are

available as sometimes the hospital formulary does not have some of them.

Orders sometimes state, if patient has pain levels over 5, you make give

increased dosages and a nice nurse told me this. She said if you tell me you

pain level is eight , I can give you two percocet.

When I had a kidney cyst removed, I admire my Doctor as he made sure I had

Dilaudid, Toradol (life saver) and valium if needed and on request.

When a nurse refuses to call a Doctor, ask for the nursing supervisor, if this

does not get your response, as for a hospital administrator or quality assurance

officer and they WILL come up.

They need to know that you might experience withdrawal and you don't need that

on top of pain.

This is something all pain patients should discuss with their pain management

doctors and staff. My pain management doctor increased my pain medication to

cover the period after my surgery and my urine test (of course) showed the

Dilaudid and I had to get copy of my hospital records, discharge summary and

placed in my clinical records as I did not want any problems.

Who referred you to have the pump? That doctor should be arranging everything

for you and I have never heard of someone refusing to monitor them if they refer

them

Good Luck and I am sorry I didn't understand what surgery you had or what your

status is, could you explain further? I cannot understand why they would do a

trial if they did not have someone to manage it. This sounds like incompetency

to me. Well wishes, Steve.

Bennie

[Guest guest]

> Ellen wrote:

> Wow. That unbelievable. I hope somebody with brains get involved with your

case. Ask for the hospital social worker.

>> M

>> I've been putting off writing this post because I have been beyond

overwhelmed.

,

Each insurance company has a case manager and you can call them to assist in

your care. You can also ask for the process for " out of network " doctor

justification as I did this with my condition and no Doctors were available on

the plan I had.

The one plan I had was if you cannot find a doctor withing thirty mile radius,

they will pay for you to go to a Doctor out of network. You might check.

The hospital will have a patient advocate officer which usually is a hospital

administer or Quality Assurance Representative and this is who you should

contact, even after the fact so you or someone else does not have to go through

this experience.

Each hospital has this number or persons name posted in the admission literature

and posted on the walls along with the Patient Bill of Rights.

Good Luck, . Bennie

[Guest guest]

Bennie wrote:

When I had a kidney cyst removed, I admire my Doctor as he made sure I

had Dilaudid, Toradol (life saver) and valium if needed and on request.

Bennie,

Just how painful is getting a kidney cyst removed? I've one that is

taking over and needs to come out soon. I'm so sick of being in pain

that I'm chicken to subject myself to any extra pain by having more

surgery. I've had so many surgeries my body looks like road map.:-)

Lyndi

[Guest guest]

Wow, not only to I understand your pain this actually doesn't surprise me as I

has something similar happen. Im so sorry this happened to you but nurses are at

times ignorant. Not all nurses as my brother is one and I've had some amazing

nurses take care of me. However all nurses are not created equal.

Following the last surgery I had after I was taken off the pump and switched

from iv drugs to oral dosing formulations so that I could go home they want to

make sure my pain was stable for a day before leaving. I was on my old

medication and the orthopedic doctor was going to give me the difference. So I

was supposedly required to get pain medications from two doctors....now how

weird is that. Anyways this one nurse decided to withhold my dosing telling me

that I needed to wean down further so I could go home only allowing me the

medication I came in on.

So I had nothing to cover the additional pain from the procedure just days

before that would require months to recover. I asked her call this special team

for pain patients and I started to think she took some of my medication.

The doctors and pain team made sure this didn't happen again but those 2-4 of

hours without that dose was one of the worst pain I was made to suffer. All

because a nurse believed opiates are bad and its her job to taper me down as I

don't need them.

Sadly there are people like this out there and it s something we must live

through. For this reason I hate how im so dependent on the system for my

medications.

I constantly worry what would happen in an emergency. Not only would I be most

likely unable to obtain a script but would find it impossible to get it filled

at a pharmacy anywhere. Im glad I wasn't down in katrina as something on this

scale would be a serious situation for many of us on high doses.

[Guest guest]

I am so sorry that you had to go through that kind of pain. As far as

the last part of your message, I have a stockpile of Duragesic patches

because we have had trouble getting our patch prescriptions filled in

the past. I have also been through fentanyl withdraw before.

My patches are prescribed with 48 hour dosing. I can usually stretch a

patch to 54 hours (sometimes 60 hours, but NEVER 72 hours). My old PCP

told me to just changes them when I have to and she would keep

prescribing them as 48 hours and having me fill them every 30 days,

even if I had some left.

Over time, that adds up and now we can go almost a month without running out. I

can't imagine being on the mercy of the pharmacy and DEA (The DEA limits how

much of each drug can be sent to each state every month and every year) every

month.

Basically, if my wife and I were stuck in a natural disaster, we have

enough Duragesic (we use the generic Mylan matrix patches that can be

cut) to taper our dose down if we could not get a prescription for an

extended period of time.

Steve M in PA

>Anyways this one nurse decided to withhold my dosing telling me

that I needed to wean down further so I could go home only allowing me the

medication I came in on.

The doctors and pain team made sure this didn't happen again but those 2-4 of

hours without that dose was one of the worst pain I

was made to suffer. All because a nurse believed opiates are bad

and it's her job to taper me down as I don't need them.

Sadly there are people like this out there and it s something we

must live through. For this reason I hate how I'm so dependent on

the system for my medications.

I constantly worry what would happen in an emergency. Not only

would I be most likely unable to obtain a script but would find it impossible to

get it filled at a pharmacy anywhere. I'm glad I wasn't down in Katrina as

something on this scale would be a serious situation for many of us on high

doses.