I know what you mean

[Guest guest]

Hi :

I know exactly what you mean. I feel so badly for how you were treated,

but had the same experience when I went to the hospital when I was first

ill and diagnosed with RP.

I took RP information and no one listened. I asked for pred since I

couldn't keep it down due to what they called the " super flu " and was on

80 mg a day. I couldn't keep pred down for almost 2 days and adrenal

system shut down. I was in hospital for a few hours and finally

realized they wouldn't help and told them I felt better even though I

could barely walk. I came home and took my prednisone and RP meds and

finally was able to keep it down and then started to get better.

I know my experience was terrifying and that is one reason when I

collapsed 2 weeks ago, I waited until pred and Ibu had a chance to take

affect before I was going to call paramedics. Went to primary doc and

he had another doc on call for him and this doctor didn't have a clue

and the resident who was with him went up one side and down telling me

my meds were wrong and insisting I change them. Neither or them had

ever worked with RP and thank goodness my doc just happened to come in

for some reason and I guess I was so mad at what they were trying to do

that he came in and when he found out what was going on, he told them

promptly to stop it and to listen to me because I know my body and that

they were way off base.

Am still waiting to get MRI because Cobraserve messed up my insurance

coverage and I can't afford to pay $1,100 up front for MRI. Hopefully

it will be next week.

This disease calls for a whole different set of protocols and docs don't

really have a clue most the time at least in my experience. Hospitals

are getting worse due to nurse shortages and it is really scarry. I

think my problem is with my herniated disc, but unless I continue to

collapse, I don't think I would let any doc operate on me especially

with RP and anesthesia considerations. It really puts us all in a heck

of a mess.

Guess our best protection is to educate ourselves and insist that docs

listen to us. I know I now carry a few days worth of meds in my purse

along with RP information so hopefully if I do end up in the hopsital,

at least I can take my meds myself if I have to. I also continue to

pray that God will watch over us and bring us docs who will listen and

understand.

I hope you are feeling better and am so sorry you had to experience

that. I do know how terrifying it can be.

Hope everyone is doing ok and prayers continue to go out to all of you!

Take care,

Cath

Bosshard wrote:

> I just returned home after 5 days in the Cleve. Clinic for a severe

> Kidney infection. We were so relieved to find out that it was not RP

> related.

>

> I am so discouraged as the care I received was terrible. I really was

> afraid their negligence would kill me. I am an RN and I couldn't

> believe how poor the care was. I had to ask twice for an

> identification bracelet - which was useless as no one ever identifies

> the patient before they give IV's or meds. One person tried to do a

> finger stick to see if I needed my insulin and I told her I was not a

> diabetic - she gave me a blank stare and walked away. She didn't know

> my name but called me " bed two " . I had to send my husband home for my

> RP drugs as they didn't get them for two days. So I took my own. I

> gave them material to read about RP so they would understand how

> serious it could be. I don't think one person ever read it. I had a

> bronchospasm one day and they didn't have my meds there so they had to

> call respiratory. They never came in and checked me after that to see

> if I was alright. I had my light on for 45 minutes latter that day for

> nausea and they still didn't come even though I had had trouble

> breathing earlier. It took five hours to get My IV antibiotics after I

> was admitted because " they were down in pharmacy " . I never saw anyone

> wash their hands when they entered the room. They never checked my IV

> sites - which infiltrated twice and I then had to force them to change

> the sites

>

> When My fever's would break I would be soaken wet and ask for a dry

> gown - they would hand me one and walk away. Never helped me put it on

> which is a trick when you have two IV's going. Never change my wet

> bed. Never had a resident examine me even though they couldn't control

> my fevers for three day's.

>

> I was afraid to go to sleep for fear of what they would give me . I am

> in shock at the whole thing! I had been a patient there before and had

> excellent care abut times have changed.

>

> It scares me to think that I might get the bad end of this disease and

> have to go back there. I guess I could go and take a private duty

> nurse with me to assure proper care. I intend to talk to the patient

> representative when I go back for an appointment in two weeks.

>

> I am home now and doing great. And feel better jsut getting this off

> my chest. Thanks for listening.

> B

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