S.O.S. Jmjm

Jim, you probably saw my post from last week, about the Orlando trip, and my HBG dropped to 8.2 while there.  Got a call from nurse telling me to do Procrit that day..  Also to come in and get another shot this week.. I guess Dr never put on the file he wrote me a script to do it myself.. they thought I was dropping and not getting Procrit.   Anyway.. today went to see Gastro for follow up.. he is excited over the UND and I gave him the exact info for the Heptimax, so finally got that one.. I will go get it maybe tomorrow drawn.    At anyrate, he now says that I need to have a transfusion, and is concerned over how my heart sounds.   I am starting to get scared, and do not know what to expect from here.  He also wrote a note to Hemo for my appt on thursday, telling him his thought for the Tranfusion and upping my procrit to 40 K.  so finally maybe I can get that.

So the Gastro is asking for the opinion of the Hemo as to course of action ?    Am I in danger ?  I should have my results from this past mondays CBC tomorrow, so should know more then.. hopefully it came up some from the 8.2. but I sure do not feel like it has.   I care nothing of eating, no appetite at all. All I want to do is sleep, infact I slept most of the weekend after returning from vacation.  

[dperry10]

Forgot something on last post.   Dr says did not want to reduce my medication or stop treatment, due to the fact I am responding well, and he is sure I will be UND all the way thru.  But what will happen if I continue to drop like this ?    I have also lost 45 lbs since starting treatment in December, but am still at the weight where my Riba needs to be 1200 per day..  although, have missed some nightly ones from time to time.. but maybe that was a good thing..  I am on week 19/48.   Don't want to stop after coming this far.. But am getting really scared..

[FlGuy]

I also use a tx doc and a separate hemo. Generally, tx doc deals with anything liver and the hemo deals with anything colored red.  It's good that they communicate and a thought from the GI to Hemo about a transfusion is not out of line.  In my case, the hemo would take input but since it's blood, it's his call.  Your GI hopefully is expressing the need in NOT reducing meds and suggesting the transfusion until the procrit kicks in, avoiding the need for riba reduction.  Stay on these guys.

[wyntre9]

Yikes!  I'd be scared, too.

But it sounds like you've got some good doctors.

Good luck with appointments this week.

wyntre

[jmjm530]

It's unfortunate that your Procrit underdosing -- 10,000 -20,00 units/wk if I remember correctly -- got you to this point, but if your doctors think you need a transfusion, I really don't see any other choice at this point. In general, transfusions work pretty fast, and hopefully it will allow you to continue treatment safely on full meds which is best for SVR if they can be handled safely. Again, that's a medical call and you need confidence in your doctors. As to finally upping the Procrit to a normal dose of 40,000 units/week, if your hemo doesn't go along, then maybe time to see another hemo, cause his underdosing the Procrit is what got you there. Good news is that you had an early viral response -- week 4?, I forgot -- and hopefully you will stay that way. Glad they will do Heptimax.

All the best,

-- Jim

[dperry10]

Actually he would not do the the 4 wk PCR. made me wait a full 3 calendar months to do it, and by then I was on shot 13 I think .    but yes the underdosing was definately a factor, and the Gastro was to have called him the week of the 9th, ( call the hemo ) to have him up my dose, but when I got the call from the nurse about the procrit, I asked if Nash had called, and she says no.    I think the dr got tied up in a proceedure and forgot to call.. but anyway..   You were right..  And he already wrote the req for the PCR TMA.. he said just to make me happy... So you are comfortable with the reading.  He at least is being a bit more apt to listen to me now.     Will see what this wks CBC is.. I just got my procrit in today.And did 20 K just a min ago.. they sent me 3 - 20,000 shots.  I thought about doing 2 of them, but figure the hemo can give me a 2nd shot when I go to see him Thursday.   And in meantime that will leave me 40, 000 for next week, till they get more out to me.  They will have to call the specialty pharmacy to double the dose, and get it shipped out to me.  He asked about chest pains and shortness of breath.   Says my heart sounds weak.   I forgot to put that in the post, as had just typed an email to LadyE, and guess did not realize I left that out in the post, thinking I just typed it.. guess I should have re read my post first..   Oh well.. I am out.. going to bed.  I think I will take a Lunesta tonight though, tired of tossing and turning all night.