Doctor

[angelbabies55]

I am on about week 19 on the ribovarin, Pegasy and the Victrellis.  I am a non responder from years ago of 2 trys with the Rib and interferon and then the Peg and the Rib so I guess I am stuck with the whole year of this.  So far I have done well but my white count has been down for months as low as 1.9.  The doctor wanted to wait until one other number in my absolute nuetrlytes reached below 1000 and it came close.  I was having labs every week to watch and suddenly they jumped to 3.3 which is almost normal. (BTW my labs said after 3 months the virus was undetectable YEA!) My question is when do you think I should have CBC done again?  I am afraid that could of been a mistake in labs plus my red is dropping now too.  He wants me to wait 5 weeks.  I feel this is too long and they never return my calls and treat me like I am no body. I know I spelled some words wrong so please excuse

[angelbabies55]

Oh I agree  I do call and get them faxed which usually the girls do not have up front and the one nurse that is messing me up has them.  I realized the doctor needs to check them but I think a week is plenty of time.  The nurse still has not called me to tell me when i was to get the nutrogen and how often i am to do my labs or any information at all..  I get most all my information from the specialty pharmacy and they are the ones that called to tell me they where shipping overnight yesterday and how often to take  I have an appointment with the doctor next week and I will have all my ducks in a row as I do not think it is him.  I believe it is that nurse and his staff and not aware of what they are not doing. or should I say doing wrong  he is the best in Atlanta and I hate to change in the middle and I have to keep my job so I cannot go running around looking for different doctors nor can I afford them or the time off work.

[Idyllic]

My absolute neutrophil count was 800 and my white was 1.7.  They are suppose to order me nuprogen to give myself daily or 3 times a week.

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800 seems kind of high for daily Neupogen much less three times a week. It's like NYGirl said above. Unless you have other conditions normally intervention is considered when ANC <500

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It was awkward for me to ask copies of my labs. I did not want to be a pest and I hate confrontation. It took a few tries to build the courage but I learned how. I encourage you to try the same thing. It takes persistence but you can do it.

Do not let them blow you off or give you the run around. Your medical records are yours. I don't know if you have convenient access to a fax or if they will email your labs or what but this truly is a good time to advocate for yourself.  This is crucial especially if you do end up going on Neupogen. This med requires frequent labs (weekly) and the side effects can be very bad for some people.

I hope you can forgive me for coming off as preachy but you deserve the peace of mind of knowing and understanding what is happening to your body as well as how your treatment for this  disease is being managed

[pooh55811]

I don't know where you live but, if it were me, I would start looking for a new doctor. Your situation sounds a bit like mine in that I felt like i was in a nightmare skit with The Three Stooges. My team was screwing up big time and if I had not been correcting all of their mistakes, I probably would have failed treatment. I did finally find a new doctor in a large city nearby. I got a University affiliated doctor. I have to drive 70 miles one way to get there, but believe me, it is worth it. They know what they are doing.

If you are so inclined, try going on the internet to look for a Hepatologist (Gastroenterologist who specializes in liver disease). You could start out by looking at the university affiliated hospital in that city and checking their Hepatology and/or Gastroenterology clinics. You can tell from the bios which docs are liver specialists.

If you let us know which large city you are near, someone here may know of a good Hepatologist in your area.

Best of luck.

[angelbabies55]

Hi Frijole!

Yes it sounds to me after getting my lab results yesterday that I will be on nuprogen the rest of my treatment.  They where talking about 3 times a week or daily?????  Anyway did you give yourself the shot or did the doctor?  How expensive is this shot since it is coming from that specially Pharmacy?

[angelbabies55]

Yes I am very upset with the nurse.  There was a new one there yesterday there replacing her for the day and was not able to locate them but finally did.  My absolute neutrophil count was 800 and my white was 1.7.  They are suppose to order me nuprogen to give myself daily or 3 times a week. Did you give yourself the shots or did the doctor?  This nurse also informed me that I as to see the doctor every month and I was told different by that other nurse.  I have only seen the doctor one time and that was before I started my treatment 6 months ago.  The new nurse thought and the doctor thought I as going to be done next month so letting me slide but I informed them I was a non responder and had 6 months to go she flipped. They are completely lost at that office at my health expense. Anyway they are to call me today and try and order the shots.  My question to you and others is 1. Do you give yourself these shots? 2.  How costly are they?  i will probably have to do them the duration of the next 6 months.

[flcyclist]

meant to say -  the doctor might be unaware of the poor follow up.........