what do you all think of this?

[jonney4141]

I think when i go in to see my doc on the 27th, i am going to recommend that they hire someone who has gone thru the treatment (someone like me (lol, plus i want a part time job) hey it won''t hurt to ask? she said she was being bombarded with new patients. I also think it would be wise to have someone to answer questions and who can show some compassion without thinking the person is a drug addict, or physcotic, someone who has actually gone thru the whole deal. i like my doc, but she needs to learn HOW to talk to patients, sometimes i feel like i have done something wrong and am being scolded by my parents with her, when in reality she has not taken this treatment and no one on her staff have either, so they are not telling the truth when they say they know how i feel? if someone would be there who said that they have gone thru the treatment, and this is what you can expect i think it would ease some of our fears?? they just called as i am writting this and said i can come and pick up all my records for this physiciatrist yeee haww can't wait to see what are in these records.

[stubby226]

Apologies accepted..I certainly did not want to make you feel you were wrong. Feelings are feelings and do not merit right or wrong.  You also should not think you are an isolated case.  I worked in an etoh recovery program and the number one complaint of the clients was how can she teach me when she doesn't know what it is like.  I do think there are times when working with various type of people that a person who has not experienced the situation can be as theurpuetic as one has .(a little long sentence,hope you were able to readit).  I also know counselors and other community workers that were recovery alcoholic and had no epathy for the person in recovery.  Joney's last statement said it all.  I just believe that compassion and understanding does not always come with a post pt.  We can always pray for others,  knowing God answers prayer.  I too am glad I found this forum.  It was late in my tx but I could relate to others about alot of things.  I pray for a compassionate heart and that I can let his love shine thru me.  When I  put the focus on me and the need to have my views validated that I often forget to be caring.  Gotta go.  Have a great day.

[jonney4141]

yes i am apologizing too, i would not wish this on anybody. i do have alot to be greatful for and one of the things is having this forum to come to and knowing there are others going thru this. i think as a whole the human population should learn how to respect each other and truly care about your neighbor, it's hard but with God all things are possible.................................................

[newleaf09]

My apologies about wishing TX on anyone who didn't absolutely have to withstand it.  Your examples in your post embarrass me for even thinking it.  Sorry.

[IMstacie]

Jonney, I feel the same as you.  But, it's not that I don't think my dr cares, I just think he just cares about other things, he is focused on the numbers.  I do believe if he did involve himself with the sx's I may not be so doubtful of his decisions. I still remember about the 2nd month of tx when I was asking for an excuse from Jury duty when he said "no."  At the time, I was covered from neck down with a thick, raised, ichy rash; was sooo sick and restless, hb & nutrophils were low, AND had to go to the restroom soooo many times from all the water I was drinking.  I went to my primary dr. and he didn't have to think twice once he saw me and my labs.

I was thinking about composing a letter when I reach SVR and send it to him.  If nothing else it will make me feel better.

[stubby226]

As a nurse I would hate to think I had to go thru every tx one of my patients did to learn compassion and caring.  I would get to go to AA(which never hurt anyone), go to NA, go thru chemo therapy, loose a loved one so I could have empathy for the pt that was grieving, I would hate to have diabetes and have to give up sugar just to understand how difficult that is, depression without treatment would be hard enough but to have find the right med to work and learn to live with the side affects and social judgements attached would be impossible,and then there is the patient that looses a limb or use of one .  I know these statements may be drastic but believe it or not I do not believe someone has to experience something to have empathy, understanding and acceptance.  I do believe that I was a warm and compassionate nurse because God allowed me to experience so many things.  I just know that so many nurses still get in the proffession to find a doctor , to make money, or other personal non caring reason.  I believe any nurse that is unable to have empathy, understanding and acceptance needs to be delegated to the back office where she does not deal with patients directly.  People need to work to take care of themselfs so its hard to volunteer to be a patient advocate.  If you or anyone learns all they can and offer there services to new hep patients I think it would be great. sometimes volunteer services like that will open up the way for a new position and job.  I know that I may not know how a person feels as each one is different, I do know that the side affects of tx is difficult, unpredictable, and just outright unbearable for some but is perfectly ok for others.  I guess i have been on this soap box long enough.  Hope your nurse gets hep c and experiences side affects from treatment.  Then you could be a compassionate person reaching out to her.

[virgocharm]

i so agree. i will be scouting when the pi s hit in .

[newleaf09]

We secretly all wish the docs and nurses had to go through 12 wks of TX just to build some empathy.

Your suggestion for a counselor is a good one.  The staff will not take you seriously while you are on TX (interferon causes too much mood disturbance to trust putting a counselor with patients while BOTH are mood disturbed).  Wait until you have finished and then offer yourself as a "Peer Counselor" for patients on HCV TX.  You would have to have a good liaison with doctor to get answers for unknowns but I really like the idea.

[Rockerforlife]

Without this site i would never have asked my doCtor about getting in on the new Boceprevir trials.How else would have i known ?...This site saves lives...PERIOD.

[jonney4141]

lol!!!!!

[jonney4141]

you are so right! if it had not been for this forum, and learning about this, i would not of had a clue, and would probably been admitted and probably would of stopped treatment. thank God for this place!!!!!!

[FlGuy]

Make sure you run that suggestion by them AFTER they stick you with any needles that they plan for that day. Personally, I don't expect or want compassion from a doctor or the staff, it's not the service for which I pay. Besides, it would infringe on the territory that is the responisbility of your local bartender.

And not to be too brusk, consider your next meeting with the doc from the doc's point of view:

Jonney: You should hire someone who cares about patients.
Doc: We care
Jonney: But you don't care enough or understand what patients go through
Doc:  We provide the prescribed standard of care for your condition
Jonney: Can I have a part-time job in your office?  I think I can help
Doc: Here are the records for your pysch consult.

Good luck.

[nygirl7]

They should all be forced, even in a group of doctors like a network of them to have someone that people could call to talk to about their disease - but alas they are never going to because in the end it all comes down to the mighty $$$$$.

That is why we find ourselves, years after treatment, hanging out still on this forum - to make sure that the information is correct and that people are given hope in support.