update...school, potassium, hemoglobin...

[inquiring mind]

Snapple I started out pre treatment at 14.5. I don't have copies of labs handy for intervening time, but I know by week 6 I was at 9.9. At week 8 7.7 (CBC I had on the 28th). I am hearing over the phone now that the CBC I had on the 30th (yesterday) is at 7.3. I am going to the SLU ER after my classes are done today to try and get a transfusion to hold me over til I can get procrit, which is turning out to be more complicated than expected (of course). I have dose reduced to 600 in the meantime but I'm hoping once I get the procrit I can go back up.

Good luck with your appointment today!

[greginky]

Hang in there IM, we are all pulling for you. You are in my thoughts and prayers

[DougV]

IM,

Prob too late, but FYI...

Each unit packed rbc will raise hgb 1.0.  You are falling at roughly 1 point per week.  Procrit will take at least two weeks to even start to work, so try and con 'em into three units.

Doug

[inquiring mind]

Doug,

Thanks for the FYI BUT

ER doc denied the transfusion. I had them call my doc for backup and he sided with the ER doc, told me to take iron and stop the riba, even though when I talked to him yesterday he agreed to let me stay on the riba and start procrit (still waiting for the procrit prescription).

I refuse to stop the riba.

Think I'm transferring care to Dr. Bacon. The end.

Here's the most recent lab breakdown:

WBC 2.7 (down from 2.9 two days ago)
RBC 2.65 (down from 2.74 " ")
hgb 8.2 (up from 7.8 of two days ago)
hematocrit 23.1 (down from 25. " ")
absolute neutrophils 1.1 (down from 1.3)
Creatinine 1.16

everything else normal range.

[banarep]

8.2 should be enough to continue at 600.  Mine got down to 8.3.

[DougV]

You were above 8.0 at time of visit so they would refuse.  However perhaps that is good as it was a trend upwards after dose reduction.

I think if you can get into a new doc quickly that would be excellent.  I would obviously urge you to move quickly.  At 8.0 you are probably safe and have a cushion, but...

On emergency infusions, you have to be low.  Only time I got sent to ER was at 6.3 and even then only due to it being a weekend.  And what a pain, they ship you to general med/surg floor where they infuse at the silly rate of one unit over 3 to 4 hours. In infusion room where nurse is always there they do two hours per unit. 

On a non-emergency doctor ordered and scheduled basis generally they will infuse at 8.0.  Protocols may differ though.  That is why hematologist, this is their playground, it is not comfortable territory for even some of the best GIs.

IM, I sure wish you all the luck in the world. 

Doug

[inquiring mind]

Thanks Doug. Right now it looks like I might be able to get to see Dr. Bruce Bacon on September 12. He is not a hematologist but has been involved with telaprevir trials from the early stages....do you think I should still try to get in to a hematologist?

[DougV]

Honestly both.  It doesn't appear you have a comfort level with your current doc so at least getting a second opinion is wise.  Is that going to cause issues on drug supply?

But yes I still suggest hematologist.  You call with your lab value there is good chance you can get in fast.  I have dealt with three different ones over my three treatments. (They keep moving on me.) All three have been very aggressive and all were willing to work to insure full dose ahead and all did things I've never heard a GI doing. 

But I am a risk taker and have no problems telling a doctor what I want and why. 

I should also point out your doctor has told you to cease Riba.  As you are not you are currently acting against medical advice.  If something goes wrong and you have problems you are in legal limbo.  For your protection it might be good idea to do whatever you can do the fastest.

Doug

[inquiring mind]

Good points Doug. I will start the hematologist search tomorrow morning. Thank you for the input!!!!

[banarep]

good luck IM,  will keep you in my thoughts.

[babynewbird1]

Thinking of you too IM. Hang in there.

[inquiring mind]

Just got a call on my cell from my Dr. He says that if I am going to be stubborn and keep taking my riba that I need to see someone in town immediately. I told him that I will most likely be able to see Dr. Bacon on September 12th. He says that is not soon enough, call Dr. Bacon's office tomorrow and give them my lab values, and tell them that Dr. Bacon is welcome to call him on his cell if that will help expedite the process. I think he's mad at me but at least he's helping me out. Thanks for the positive thoughts everyone.

[DjTurtle]

With your hematocrit so low, how do you feel? I was at 29 last Oct, when I had menstruation problem and felt completely wiped out.
DjTurtle

[inquiring mind]

Wiped out pretty much summarizes it Dawn. I can make it through my classes but then I come home and sleep straight through to the next day. I can't be doing this, I have to study in the evenings.

[inquiring mind]

Just got a reply email from Dr. Bacon. I emailed him last night thinking there was a minute chance he might reply and he did! Amazing! This is what he says:

Hi Anna.   Yes I would agree that you should be started on procrit at 40000 IU per week and you should have a 2-3 unit blood transfusion today if at all possible  I am currently in Santiago Chile.  I will cc this to my nurse and ask her to arrange this for today.  Hopefully this will work as a stop gap measure for today.  BRBacon

So here's a big booyah to you all and our wonderful Hygieia, because you were right. I'm not necessarily happy about having to have a transfusion, but it is a relief to know that I'm not crazy and that I was right to try and get the transfusion even though the ER and my doc said I didn't need it.....jeez you really have to look out for yourself and that scares me because there are so many who can't do that....