need some input here please

[salvo]

I've been on .5 on the shot and 600 mil in the morning and 600 at night and one trial pill for platelets, for the last 4 months.I'm going to miami for this trial and was treated OK in the beginning but now I have to wonder.Last month I was going again to pick up more medicine, but unfortunately the person that takes care of me, was not there even though 2 weeks before that day I told her I would be there on that friday so she said OK and that was the end of it for that conversation.When I got there after traveling for 3 to 4 hrs round trip, everyone kept asking if I had an appointment but of course I did, I replied and to make things worse, the others that were scrambling to help sent me for a couple of tests just to sit in the hospital for another 3 hrs.Got one test done and I canceled the other because the doctor didn't sign the script, although I'm sure its the person that take care of me, that signs.OH by the way, went there for nothing, they said they would fedex it to me, before I run out.Now I'd like to go back a little, hope you can follow. The head doctor that I went to see and put me on this trial, did a lot of figuring with #'s and told me I was safe and I would not need a transplant and hopefully this med will do the trick this time around.(after 10 years, was the first attempt). I never got a biopsy this time around and the scan that they use in the office, and why I dont know. (Let me go forward again). I complained to this doctor that things were not going to good, by the way I was being treated, going there and got no medicine and just giving the run around, and he said to call his nurse next time and she would fix it.To make it a little shorter, I did call and it seemed it was almost impossible to get her on the phone.Before you know it, the changed my app. to see the doctor  3 months earlier.I kept my appointment and was there at 4 pm but almost never got to see the doctor again but asked another doctor to see me after 2 hours.When I asked to speak with the regular doctor he was not to happy cause it was late, and when I complained again, he made a 100% turn around.He was not to polite and gave me a story that I should be "GRATEFUL"  for getting all this med. for free and kept sticking it in my face. I'm not the one to hold back, but this time I did.I'm really disappointed with this doctor for treating me as he did. Now as it stands, I called to find out if I can pick up my med. this friday,12/2/2009 and once again could not get someone to answer, but after 2 hrs of calling I finally got the doctor himself.I told him I needed my med., and could not find out if I should go and also asked him, about my throat which is bleeding.He first said well its Ok to spit up some blood but maybe I should be looked at FRI.-------Basically you have most of the story, but my main concern is this, Since I never got a biopsy done this time, and when I told him about my bleeding, he got a little wild again, and asked if I wanted to stop my med? and of course I said no but it would be nice to get information as promised after 12 weeks, so I could make a decision and why is it taking so long? and that was promised for this friday too.Now the other statement he made, that if I stop the med. do I want to get started on a transplant? and Of course I chit.He said in the beginning I was safe with a "9" but now he is asking me about a transplant. I dont get it and when I said it to him, he said a 9 is OK but a 10 is a transplant.(I dont get that also), is he suggesting that if I stop my med I will need a transplant? and if thats the case, is it because my liver got worse from the med.? Why did they never give me a biopsy? I'm sure I have lots of more ? just a little up set with all that going on and pretty pissed that this is got to be the way, and I'm just not understanding whats going on.----Sorry for such a long post and hope you can follow.

[CoWriter]

and now it showed as " less then 5".


That means undetectable.  Congratulations!

Co

[salvo]

OK, Friday passed and Yes all that stuff did happen. I just about agree with all that have replied and you have been a comfort. I went Friday to P/U and finally got some answers from my 12 week test and I'm shocked. I feel like the worse that I have ever felt, and what we go through, I call it abuse. According to the person that is in charge of the trial, she claims that she doesn't think  the doctor meant that I needed a transplant, but of course she is guessing.Then we went for the blood work of the 12 week and went through it, to find it was very positive but I'm not going to jump for joy as of yes, mabe if I was feeling good I would but I'll wait for the 24 week. The #'s are a little confusing to me since I know I was in the millions but this result showed, at start was 357,000 and now it showed as " less then 5". I know this is a great difference and I should be please but like I said, I'll wait. When I did the treatment the 1st and 2nd time they also had a good beginning and then I dont know what happened. Maybe cause I did it for 6 months only, but then again I'm guessing. Oh by the way, I can trace my low platelets to 1 of 2 things, antibiotics 2 differant kinds in 2 months, and possible the gallbladder operation.At that time my platelets kept going down and never up, and then I developed "Lynchen planis"  thanks to all of you for the reply

[apache1]

small correction in above post

suppose to be:
made me feel very comfortable and confident
not
made me feet very comfortable and confident

LOL
apache

[apache1]

I am so sorry you are having problems.
That is my hospital also.
Although it doesn't sound like it from your post.
You say this happened on Friday, was this today? I know a lot of the staff now are out for the holidays till Monday.

My communication with University of Miami Miller School of Medicine is great. They are always calling me. They also email me, all the time.

I can always make 1 phone call and talk to Dr.  Another call to talk to my NP. Can also email Dr for a less urgent need, and he responds to my emails within an hour usually.

Goes to show, 2 people can have opposite experiences at the same place.

Are you seeing one of the fellows in your drug study or one of the Hepatologist at the Liver Center ?

The Dr's I have seen there, gave me prompt care, the utmost respect, and always made me feet very comfortable and confident.

Maybe it is because I am a not in a drug trial study...
Not sure about the attire thing, I do wear a suit, but I wear one everyday.

You being cirrhotic, with Dr's talking about TransPlants, on a low platelet drug trial, that allows you to even do tx, might want to look at the big picture here.
Salvo, please take this as constructive advice, not a personal attack. Make this tx work and get a SVR, whatever it takes. Stay positive and get thru all this BS.

Not sure I understand what you are asking about.
"9 is OK but a 10 is a transplant" ???
Cant be fibroscan because 10 is a relatively medium fibroscan score, I was told over 12 is possibly cirrhosis. So a 9-10 should be a long way away from a TP
Is it meld score ? or some other blood marker number ?

apache

[CoWriter]

"I say this, because you're not the only one that has reported what I consider abusive behavior from a particular senior doctor in that group."
----------------------------

People don't seem to realize that they can complain to the Institutional Review Board that approved the study and consent for the specific trial.  The primary purpose of the IRB is to assure that the safety, rights, and welfare of the participants are protected.  Their contact info is always listed on the consent....and they take patient complaints   very seriously.  

Co

[jmjm530]

I didn't think it was Schiff himself, and I do have a pretty good idea who it is. I say this, because you're not the only one that has reported what I consider abusive behavior from a particular senior doctor in that group. "Co" gave some very good advice how to handle things under the circumstances. The dressing up thing has also worked for me, in fact I found that I can almost double the amount of time that Dr. will spend with me if I arrived with suit and tie versus my usual jeans. I don't think it has anything to do with showing respect, it's just the way many of us are conditioned to react. There was a very good book many years back called "Dress for Success". The author actually conducted experiments as to how people reacted to simple things such as wearing a tie or not wearing a tie. I believe in one experiment, the person wearing the time was allowed entrance into a building without the requisite pass 100% of the time. The person without tie, dressed pretty much identical otherwise, was always refused entrance. They used actors for the experiment and were instructed to behave identically. For those who think it's always  what's on the inside that counts, the book might be interesting :)

-- Jim