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.

[salvo]

Yes I'm still taken it, one pill a day on an empty stomach, that why I choose to take it at between 12 and 3 am so I dont have anything in my stomach.It works for me from day 1, and I'm glad that they approved it but wonder how much its going to cost with or without insurance.My platelets were in the 50, 60,'s and I've seen it as high as 240, and as low as 125. Its this problem with a rash that I'm going nuts at the moment.Got it all over my arms and legs and where I give my injection, will always leave a round rash the size of a baseball.Loosing lots of hair on the legs and almost balled you know where.The only good thing is I shave less and dont get to many haircuts.  

[comeagain]

I´m trilled on your behalf and if you remember I have a friend actually a girlfriend to a friend.
I know her too we were doing drugs 37 years ago.She cant treat because her low platelets.
And that this drug youvé been taking now are FDA aproved is very good news for her and other in hers situation.

I also remember what an positiv effect the eltromopag had on your platelets are you still taking that medecin?
Please keep us updated on your journey this is very interesting stuff I think!!!

Be well and don´t forget the suit on next appointment what the heck where a tuxedo LOL!!

ca

[jmjm530]

Salv: there could never be a "0" reading and thats why afterward must be checked all the times.
---------------------------
That's one way of putting it, at least during treatment, that's why SVR (cure) is determined if you're UND (<5 would be considered UND) six months post treatment. You're in treatment that's why you can't be declared cured even if UND but you still have the best possible outcome.

-- Jim

[salvo]

Yes I understand, but it was explained to me by some sort of tek and the study person.It was also explained that there could never be a "0" reading and thats why afterward must be checked all the times. The blood work I have copies, but its not signed yet until the study doctor see me and in this case it would be the platelet doctor.

[jmjm530]

As stated, "5" should mean the same as UND and I'm surprised it wasn't explained to you that way although it wouldn't surprise me that the NP isn't aware of what it means. In any event, always a good idea to request your own copies of every blood test and procedure report. That's really the only way you can verfiy/double check the results.

-- Jim

[apache1]

Yes !!!  <5 und by week 12 ... cEVR, complete early viralogical response...great !

Salvo buddy, this is the time to be happy. TX is working. Cheer up, be positive.
No, you have not won the race yet, but are in a very good position at the quarter way mark. All your odds just went up having cEVR.

The important thing for you to do now is strict compliance with your meds schedule.
don't miss doses, and be on time with you meds.

apache

[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

[CoWriter]

I forgot to mention something.  Eltrombopag (the medication that increases platelets) got FDA approval in November.  


http://www.drugs.com/newdrugs/fda-approves-promacta-eltrombopag-first-oral-increase-platelet-production-serious-blood-disorder-1188.html

Co

[CoWriter]

Even though at first glance it may seem like you're not being treated well, the fact that you're confused about some things, tells me that there might be more to this story.

For example.....the fact that you're on a trial that uses a medication to increase platelets, tells me that you must have had very low platelets which is a sign of cirrhosis.  So there would really be no need to do a biopsy if they already knew you had cirrhosis.  Furthermore, having very low platelets would have increased the risk of bleeding if a biopsy was done.  

So I think that answers the question of why a biopsy wasn't done.

My guess is that you're on the "Eltrombopag To Initiate And Maintain Interferon Antiviral Treatment" trial.  (easy guess since that's the only trial using a drug for platelets).  

You need to understand that without the platelet medication, you might not have been able to take the treatment for Hep C.  So that, indeed, makes you lucky to be in this trial.  However, your participation in the trial is also making the doctor some money, so he is lucky to have you.  It works both ways.

I worked in Clinical Research for 11 years.  So let me give you some pointers that might help you:

1.  Read the consent you signed again (they should have given you a copy).  It will tell you exactly when your visits should be.  

2.  It will also tell you what the window period is.  For example, if your visits are every 4 weeks, it will tell you that you can schedule the visit 3 days (or so) before or after the visit date.  That's in case you can't go to the visit on the exact date.

3.  When you go for a visit, before you leave make your appointment for the next visit (instead of calling when you're running out of meds) and always get an appointment card.  That way if you show up and they ask whether you're supposed to be there that day, you can show them the appointment card.  

4.  The consent will also tell you the name of your Study Coordinator as well as a contact phone number.  When you call, ask for that person, it will save you time.  Otherwise the staff has to figure out what study you're in so they can give your call to the right person and that can be very confusing especially at a large place that conducts multiple studies.

5.  If you have trouble reaching the Study Coordinator, next time you see her, ask her whether there's another way of reaching her.  But instead of complaining, make it sound as if you're just trying to make things easier for everybody.    

6.  When you're scheduled to have a test done, you cannot cancel it without making arrangements to have it done later.  Sometimes tests have to be done before your next  study visit, so if the test isn't done, your visit may have to be rescheduled.

If the script for the test wasn't signed, they could have called the doctor's office to get a verbal order.  A verbal order is just as good as a written one.    

7.  Be aware that you may not need to be seen by the doctor at every visit (sometimes you may see only the Study Coordinator).  If you're having problems, let the Study Coordinator know and she will have you see the doctor if needed.  

Study drug is usually not fedexed to patients.  That's a violation of protocol and they would have to get special permission from the study sponsor to do that.  So the fact that they were willing to do that tells me that getting scheduled for a visit when the Study Coordinator wasn't there was probably their mistake.  It happens....but it doesn't mean it will happen every time.  Let it go.

I agree with Jim and MerryBe....attitude can make all the difference in how you're seen.  Instead of complaining and blaming people, saying, "I don't mean to be difficult.  Please tell me what I can do to make this process easier" will probably get you better results.

And my last piece of advice.....

Become more than just a name on a chart.  Make them remember you.  Tell them about yourself.  And make them want to help you.  I never forgot people who said things like.....

"I'm scared, please help me"....."I want to see my children grow up"...."My family needs me", etc.   And when people said, "I'll do whatever it takes...just tell me what to do", then I was ready to do the same.  

Co

[Keith_2008]

Nice job MerryBe! I could not have said that better myself.

[merryBe]

I think if you are borderline between needing treatment or transplant then the risk of biopsy is higher. The further advanced your liver disease the more internal pressure the liver is under. Sometime blood pressure inside the liver can be twice or even 3 times higher than the blood pressure in the rest of the body. For this reason doing biopsy on late stage HCV patients is very risky. Internal bleeding is a real concern.

With the new fibroscan and your labs they may have felt they were close enough in guessing your stage to try treating one more time based on your numbers, rather than just to automatically put you on the transplant list. Once on that list, you cannot be treating, and you only have a 50% chance at best of receiving a liver and sometimes much less than that.

That answers your biopsy question but as to the rest of the treatment you are getting the shuffle. I would agree you should sit down with the doc and ask why the run around, and did you offend someone.  Tell him of course you are grateful for being in the trial but that doesn't change the fact that it is a burden for a sick person to drive for 4 hours only to discover the person and medicine he drove for are not there.
Regardless of how busy they may be, this is not appropriate care of patients and was unprofessional on the part of that nurse.

That said you might want to recalibrate and try to make nice with the whole staff, even if you were wronged. The reason I say this is right now you need them a whole lot more than they need you. You will also need them even more if you need a transplant.
Ergo I would start trying to learn peoples first names and get on the best terms you can with as many as are willing. It's not easy when one is sick to have to deal with all this, but just know that the kind of treatment you receive can be improved if you yourself work at communication skills.  
The medical profession is severely overworked in many cities and while it does not excuse neglect it should make consumers aware of our need to go the extra mile to make them feel appreciated. My experience is the more the patient tries to relate to their caregivers the better their care of us becomes.

So  my advice would be to think of yourself an ambassador. You are coming representing your whole life, and that of your family, and your future on this earth...so do what a diplomat does, learn ways to get folks to want to help you.
I've become an advocate of small talk, knowing names, complementing every kindness and noticing things they do well that can be praised.  All too often medicine is so rushed that the people never get thanked or noticed...and that then reflects in patient care.

I know it may feel like you are the wronged party, but my point is, get past whats gone wrong and try to put your head together with someone who will help you.

If you get confused, take someone with you...it's easy to be confused in late stage liver disease.  I'd even ask the doctor if you could take lactolose for your brain fog if you have any. And despite the fact that you are suffering, try to be sweet to people...it goes a long way.
Just yesterday my lab person wanted to hug me to say happy new year....I think that illustrates the point....even though she's kept me waiting on occasions, we discussed and moved past that, and are now good friends. So keep in mind these folks have the power to make your life a lot better, or worst, and act in your own best interests at all times.

I'm not saying be phoney with people, just accept them as flawed, same as we are, and try to get past the stuff that goes wrong, otherwise you may end up with no one in your corner fighting for you but you...and your results without a team of "care-givers" will be compromised.
Think of the word itself...CARE  GIVER.....now ask yourself....how can I make them want to care for me....now do those things.

I even suggest to people that they dress up a little....even if you aren't feeling well, going in looking nice shows respect to them, and shows them that you care for your own being and your own appearance. That you care about yourself makes others take you as a more serious and more professional person.
Even if it's just wearing an ironed real shirt instead of a t-shirt...what others percieve will be altered by even the smallest things. Smile, and make eye contact always.

If you cannot be assigned a different nurse than the one that stood you up, I'd suggest you try taking her aside next time you see her, and ask if she is OK. That way if something happened to her that day at least you'll know what or why that happened. Perhaps she'll be extra attentive from then on if she knows you were put out, but still concerned if she and her family were OK. Again, be a diplomat in resolving issues, honey will catch you what vinegar never will.

Good luck to you and I hope your team and your doc will have some straight answers for you soon.

mb

[Keith_2008]

After reading this confusing post I feel pretty lucky to have the Doctors I have. All the doctors I use in regards to the Hep C have been very professional and supportive. They seem to have a better understanding of this disease and don't discriminate so easily. I currently have 3 Hep C Doctors that look over me and 2 of them are husband and wife. I also have the clinic nurse who has been helpful. I have developed a relation with all of them and they always spend ample time with me and answer all my questions. I could not complain about the treatment I have received from these Doctors. On the other hand I have seen some other Doctors (unrelated to the Hep C) that were horrible and feel that they were discriminating once they knew I had Hep C. Probably due to there lack of knowledge about Hep C.

It sounds to me like Salvo needs to find a better Doctor. That may not be very easy to do though. Someone down at the clinic needs to get there act together. I would find it very discouraging to have a Doctor talk to me the way they talk to Salvo. Personally I find that any Doctor who acts negatively in regards to Hep C probably should not be your Doctor. Good luck to you Salvo.

[salvo]

Thanks for your reply and yes all of the things you said are pretty much what I already knew, but being me and a wild temper is not so easy.I would rather have a good fight then just take all the abuse, especially the change from one extream to the other. As far as the doc., it is not him but I guess they all get to that point.the med, I taking is pegetron alfa 2b, and 1200 mg. riba a day and 1 pill for my platelets which is a med on trial also.You mentioned to bring someone with you, well I did and this doctor went from a gentleman to a warewolf, he  got a little nasty with the wife too. I guess I'll know more on Friday, so thanks for your reply

[Rockerforlife]

In a nut shell id say if you are in a trial,you pretty much stuck with these so called doctors..if you are treating on you own....go get another hospital...this is the way i see it in  the simple way...sounds like you care you are getting dont sound right to me...to be honest..sounds down right scary

[Rockerforlife]

Thats whtt i meant to say Jim....thanx for helping me out LOL...its just there were so many questions i didnt know how to respond in the proper way....you should  have went to school and became a  Doctor. a shrink is always  in great demand  nowadays too

[jmjm530]

first, about all the problems you're having.

Trying to see things together, sounds like you're treating with the Eugene Schiff group in Miami. Dr. Schiff has an excellent reputation but as to the group as a whole I've heard both good and bad anecdotally here. Sounds like a bit of a mill down there, as a lot of these big teaching/trial hospitals can be.

I'm guessing that the nine is your Fibroscan score where the cut off the value of 10 suggests cirrhosis. Fibroscan is a noninvasive biopsy type procedure now on FDA trial. As to the whole transplant thing, that's a lot more complicated than just a fibroscan score as I understand it.

Are you in a PI trial, for example Telaprevir or Bocalevir? or are you on a different type of trial as you mentioned a drug for platelets?

In any event, being a trial, we are kind of stuck where you are if you want to stay in that trial. Personally, I try for a sitdown with the dock that brought you in to discuss all your concerns. The key I've found for most of the sitdown's is for you to be as calm and respectful toward the Dr. as humanly possible. Any previous acting lessons could come in handy here :) under no circumstances blamed anything on the Dr. because in general doctors do not react very well for personal criticism. You have to let the doctor know that you realize he's doing is very best and how grateful you are to have been chosen for this trial. For this opportunity. But at the same time, you must calmly -- and I reiterate calmly -- make the doctor understand that things have just not been going right. That you would like to continue of course, but you need his help in terms of getting the tests and appointments you need in a timely manner. You could also bring up in a nice way how difficult it was to reach his nurse on the phone.

Personally, when I ran into some real screwup situations that my treatment center, I was usually able to get things resolved by sending an e-mail to the doctor. If the doctor is amenable to this, I find e-mails less intrusive, yet they can get the job done.

Also, if your relative or friend who can come down with you, sometimes I can be helpful on many levels. In business, for example, I've always found that when I brought another person or two on a new business pitch things looked a bit more professional went in fact I was the only one that was needed.

Good luck going into the new year.

All the best,

Jim

[Rockerforlife]

I am being serious...could you narrow the question down a bit..i know you are proberly goin tru a rough time it seems...but   you do need to try and simplfy it all a tad...you will proberly get a more detailed better answer...HAPPY NEW YEAR....to you...just trying to help...really am

[salvo]

This is more serious then is your reply, so if you cant help, dont even bother to reply.

[sunqueen]

That place made me crazy after just a few days of dealing with them on the phone. Wish I had some sage advice to give you. The hepa I saw there left the CFLD but I had contact with him through email. I'd say get one doctor down there and stick with him or her and tell them you want a thorough consultation and clear education about your options.