advice form ALL not tkn well at VA

[kcrandy]

well first i want to thank all of you for your support and advice from my earlier question about tx dangers and procrit aka epogen.

my nurse practioner does not feel comfortable when i get some facts and important info about the meds i am given and the effects they have on me or could have on me.i was told that i should not always trust web sites for info about tx for hep-c.  that i should look at the VA web site if i want to see or learn about my tx procedures at the Veterans Hospital were i live.

she feels threatened by me asking about meds and there effects on me so much to the point that she has stated that might not give me procrit/epogen ever again.

i told her that she should not feel threatened that as long as we both are on the same page and administiring the epogin correctly to keep my hgb levels at an adequate level to continue tx then there should not be a problem.  i even suggested asking her to check with johnson&johnson for the test for anti bodys and she flipped out.  

i give my weekly blood tommorrow 11-29-07 and i will see what happens and let you ALL now how it goes.

please i do not want any of you think that it is your fault because there is no fault to place on anyone, even the nurse pract. ...

i am a firm believer that knowledge is a great tool if used correctly and not for bad intentions. i am sure all of you agree with this analogy as well, i know this to be true just by the responses i get when i ask for that knowledge, alagirl,kcmike,jim(who i hope jennea stays warm in the winter),merrybe, grandma,ALL of you thank you ....

i will be here and with your alls help i will make thru all of this.

:::::::: OOOOOOO ))))))))

[kcrandy]

i am hoping it does not need to come to that point. i know exactly what you speak of about pt rights and your inf about va i have had to do as you have suggested on more than one ocassion.

i have spoke to the hepatologist doc today fri 11-30-07. my situation is getting better on the communication issue.  the biggest concern my hep doc has is with my plateletes continuing to drop even after lowering my dose of pegys to 90mic's and i am at 27 and there is not a lot that can be done to bring platelettes up other than stopping tx for fear of bleeding out do to very low platelettes.

so i will let you know how that and the other issue is going.

Happy Holidays to all.  : O )

[beckyv102]

And, by the way, the VA has a Patients Bill of Rights that states, in part:
Patients Have the Right to:
The best care available for their health needs within the mission and capabilities of the organization.
Be treated with courtesy and respect.
Know about their illness, condition, and treatment.
Give or refuse permission for care, treatment, or research.
Plan and participate in their care.

I stress the last sentence:  Plan and participate in their care.
Sounds like that nurse wants to ignore that part.

So, you DO have rights.  When my sister complained about how she was treated by a nurse at the VA in Buffalo they took it very seriously and couldn't have been more accomodating.

[beckyv102]

Sounds like you got "Nurse Ratchet" from "One Flew Over the Cuckoos Nest"!
My husband treated at the VA in Tampa, Florida and the nurses there were always sympathetic.
They gave us something called a "Health Buddy" which was a device connected to our phone that would ask questions about how my husband was feeling (for example, how tired on a scale of 1-10).  My husband would answer the questions every day and they would be uploaded to the VA.  If there was anything out of the normal a nurse would speak to the doctor and give us a call.  I thought it was a great system and it made us feel like he mattered and they were on top of things every day and not just once a month when he would go in.  
I must admit that my husband got tired of using the Health Buddy every day, so I usually would ask him the questions and punch in the answers for him.
We didn't always see the same doctor when we went in for his appointments, so maybe you could request to be seen by someone else for the rest of your visits.  I'm sure they have more than one person dealing with the patients there.

[kcmike]

yea bud since ku is out of it now, i'm pulling for the north.  go tigers beat the sooners and then on to the national championship!

[kcrandy]

thats my last option if it comes to that but i am hoping for solution b4 going there.

thank you.

[scratchinghead]

I know that in the State of Oregon the Board of Nursing has to investigate all complaints, even if they are anonymous.

Does this help? Probably not. Just making sure all options.

Happy Holidays back!!!

[kcrandy]

i agree you both have given me some good insights.

when i ask for the hemotologist i am told i dont need one from both nurse pract.'s in gi, and i think that the issue for them is as mike says is that i worrying to much and researching to much and to calm down.  

mike you have helped alot.   at the beginning or b4 i started my tx i did have all my ducks in a row, and at my request had a meet with my primary doc, my cardio doc, my gi hep-c spec doc and the pt rep and it was a good mtg. with all present on the same page for my tx.  as you said being prepared is important.  since then i let my mind somewhat slip and thus the present situation.  thats why i say i dont lay excuses on anyone but myself i let my uncommon sense work thus were i am at now.

so in thefuture i will be more prepared to listen as well as be assertive and not agresssive assertive to earn as well as get respect and give it.  thanks you all.

my test results today were;

hgb  11.6 down from 13.9 last week

platelettes  27 down from 28 lastweek

kidney fct was good

no procrit for a while everything else dose wise stays the same pgys 90 and 1200 riba.

and to answer i will ask for copies of my labs in the future to be more informative

i am presently 55 weeks into my tx trying to make it to 72 weeks. so far i have been und from 12 weeks on. as a geno 1a w/3-4 stage cirossis and a fatty liver issue i have and believe i am doing pretty good. thats why i want so hard to make it to 72 weeks. from what all i have read chances of svr after tx with 60 weeks of und's are pretty good.

ny/mike i am going to ask for another group mtg especially with dr pandya (hep specialist ) and pt rep and my primary care doc and get this all worked out.

boy i'll bet you either took a beatingor agve one after the ku-mu game sat. i just hope all is rooting for mu this week it would be nice to see mu in the big one in jan.

anyway enough of that off topic stuff : O )

Happy Holidays All!  : O )

[nygirl7]

Is there any way at all that you can skip her and get to a hemotologist to get Epo or Procrit on your own if you need it?

I don't understand why people in the medical field can get so damn upset when they truly don't know something - my doctor was so GRACIOUS and wanted to learn all the latest studies and things that I spoke about to him. When I went to Dr. Jacobson for my second opinion they even talked together and my GI asked if he could be included on certain mailings with the most recent info that Dr. J. did.  Dr. J proceeded to tell my reg. doctor how knowledgable I was and what a great patient because I cared about my own treatment.

This nurse should take a lesson from him - Dr. J is one of the biggest hep docs in the WORLD...not a nurse!

I also found like kcmike that if I had a scripted version ready to go...it helped greatly

[kcmike]

Hey kcrandy in case you haven't figured it out I'm at KU Med Ctr.  My Research Assistant and I shared abstracts from clinical studies and had some good quality discussions that both of us learned from.  When I saw my Hepatologist during tx once a month we spoke openly about how these studies applied to me at that junction.  For example the use of rescue drugs in order to avoid dose reductions (I took 32 injections of neupogen and 63 injections of procrit).  If I had skin issues I went to Dermatology.  If it was eye problems I saw the Opthamologist.  Testosterone and TSH levels low then off to Endocrinology.  Of course I have been their patient since 2003 and had my transplant there.  I went to High School with the Chief of Pathology!  Oh and the records department receptionist name is Betty.  

I know when this all began for me it was very frustrating.  For me I thought I could be dying, soon!  But I learned that patience and respect on my part earned their respect and if I organized myself presenting a well scripted session it spiked their interest.  

I hope you can reach a relationship with your team there at the VA.  What week are you in and how many weeks?  PCR's yet?
kcmike