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I don't know

Jan 08, 2008 - 3 comments

Things have been kind of rough for me morale wise lately, which seems fairly ridiculous given that I'm on 300mg wellbutrin XL and 20mg of lexapro daily.  I mean, that's enough antidepressants to keep a team of horses happy you'd think.  Rationally, I know its just the interferon doing this to me, so that helps a little.  There's not really any single thing that I feel unhappy about actually.  I mean, obviously I'm having serious health issues right now, which I'll go into in a minute, but that's not really making me unhappy per se, I guess I just feel... I don't know, lonely or something.  Who knows.

Anyway, treatment has been tough.  I have had four hospitalizations for blood transfusions since I started and I'm in my 14th week of tx now.  I just got out of the hospital again on Saturday.  My hemaglobin keeps going down to around 7.  The transfusions are making my iron level way too high, and my ferritin is up in the 3000 range.  I'll have to get the additional iron out of my system after treatment.  My doctor made me take a shot of neupogen before letting me leave the hospital Saturday due to my low wbc count.  (My hematologist).  I tried to explain its always low, even prior to tx, but it was a no go, he made me take it.  I really did not want it because I have been having so much bone and joint pain anyway.

My veins are very poor and difficult and I get stuck sometimes by three different people trying to get an IV started, and sometimes each person will try three or four times before giving up.  Finally this week they just took me down to surgery and put a port in my chest.  I am really happy about that.  Even though it looks a  little like I have a third breast now, this port can stay in up to a year and it will spare me a lot of pain during the rest of my tx.

Just for fun, we did a bone marrow biopsy Thursday with no sedation (don't have the results of that yet), and a test for heavy metals.  Don't have those results yet either.

My doctor (hematologist) also gave me IV gammaglobulin with the transfusion this time, it is supposed to help stop the hemolysis from the ribavirin.  He also gave me steroids that he wants me to continue at 40mg day but I am afraid to do so before conducting an HCV expert as there are various ideas about whether steroid use might sabotage HCV treatment.  Prednisone would probably help my hemolysis and thus help me tolerate tx better is the reason he wants me on it.  

I am trying to get an answer on this now, whether its ok to take it or not.  I took half the dose my first two days out of the hospital but stopped taking it today.  I am just too afraid of messing up my progress until I get an expert opinion.  Plus, I talked about it so much that my 19 yr old son finally threw his hands up in the air this morning and said, "Mom, OBVIOUSLY you are anxious and uncomfortable about taking the prednisone because you haven't shut up about it since we got home from the hospital.  So if you aren't comfortable taking it until you talk to an expert, don't take it until then."  Sounded reasonable to me.  My hematologist is bright but only has three or four HCV patients, with me being the only actively treating patient.

My HCV physician is a gastro, who is older and just flew to Germany for three weeks due to his father in law dying.  He told me prior to leaving (and he is a very sweet man by the way), that my case is becoming very complex, and that it would not be at all untoward for me to seek more expert advice than his.  He said that he has not treated other acute patients like me, or patients with my level of hemolysis.  He said that I could drop down to 800mg daily on my ribavirin if I wanted to do so but that he didn't know if it would help, and he couldn't guarantee that it wouldn't sabotage my tx.  He left it up to me as to whether I wanted to adjust my dosage or not.

Actually, I think this is the source of a lot of my depression.  I feel kind of oarless, as if there isn't really anyone but me steering the boat, and I'm afraid that I don't have the expertise to be a very good captain.  I need to find one pretty quick though.

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233616 tn?1312790796
by merryBe, Jan 08, 2008
you are up against the same rock and hard VL hasn't even gone under...and yet still, there's a persistant need to try to finish tx and see the dang thing go UND.

at some point, we need to just pray you get to someone who has had some it an hemo/oncologist who has dealt with the INF and iron issues....they may have more experience than anyone else with what you need...since your idea is to balance out tx with all the rest.

It could be, and I hate to even write this, because I know I didn't want to think of or hear it either, but it could be if your liver stage is low enough you could live to fight another day. Just saying this, because 4 transfusions and counting, maybe there's some way to settle down your blood problems first, and then return to tx in a year or two when that has settled?

It seems to me you haven't had the disease long enough for it to have done any real liver damage, and so you may be shooting it in the portal vein if you add yet another "helper" to the mix, i/e/ steroids.

In any case, I'd want to try to get your current gastro guy to do a phone consult with Gish on this.
they haven't insisted you throw in the towel yet, because they know how determined you are...and I'm right there with you!
We have the Lord, and so He is the God that heals us, and keeps us going. Still it's hard to say what wisdom is here, knowing your body has given Job a run for his money.

The Lord is good, and can restore us. I think the question becomes is he telling you to take a rest and trust Him, or to keep on fighting and trust Him.
At the end of the day, that's all any of us can ask and pray for, is the wisdom to know, and the strength to endure....
and still, in all his suffering Job did not curse the Lord, but rather, he said...."even if Thou slays me, Yet will I praise You."
Knowing who He is, and where we are destined for, means never give the devil that inch.

Let's agree that the Lord give to all our doctors wisdom beyond anything they can ever possess on their own....that they have Divine wisdom imparted to them, and that the waves part, and the doors open, and they be compelled, in spite of themselves or their busy schedules to really advocate for, and think about our cases. Amen?  You are not alone here.  In Him, MaryB

264121 tn?1313033056
by alagirl, Jan 08, 2008
I have written up my hx and current info and sent it to Gish's email.  I'm hoping to arrange a consult with him before changing anything about my current tx.  I'm sure he's a pretty busy guy though.  I am going to try calling his office tomorrow.  Since I'm in my 14th week and have been UND since my first bloodwork at week 4, I at least find that encouraging.  Its about the only thing I have to hold onto, and one of the things that helps keep me plugging away every day.

That and the fact that I have so many people in my family and work who are behind me treating this year, willing to support me and the like.  Not sure I could ever summon this much support again.  I am just hoping as each bit of time slips by that slowly I'm getting through more treatment.  The more treatment I get through at full strength, the better odds I have, I think.

I am not so concerned with the entire iron issue I think, probably because I successfully used phlebotomy to rid myself of it before and it didn't take very long, and it was a very effective and lasting result.  Its unusual to do it that way though, may be hard to get a hematologist to sign on, they like to use the chelating drugs.  Quite frankly if I really had to and I couldn't get a doctor to sign on, I could figure out how to do it at home.   I mean, I wouldn't, but you get my point.  There is plenty of info, studies, experts on this topic online, so its pretty easy to find experts to talk to.

409336 tn?1202429286
by KDH59, Feb 06, 2008

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