Update - Bone Marrow Shut Down

I kind of just wanted to update you guys on my status, I know I've been on here only intermittelntly lately.  I took my last interferon shot I believe it was about two weeks ago Friday, but I'd been off of the ribavirin for a week or two before that because I knew that the hepetologist would ok my stopping treatment, now that I'm about seven months out.  So he did, and I stopped treatment, but still needed the next blood transfusion because I had been close to needing one when I stopped.  So I thought I was home free.

Then I woke up a week ago and my hand was a deep angry red and purple in kind of glove effect, everything from the wrist down.  I thought actually that I had thrown a clot, because it was white from there up.  So I call my gransmother, scare the holy living hell out of her telling her to break all kinds of speed records getting me to the ER< then I call all of my family members telling them in a maudlin fashion how I just wanted them to know how much I loved them because God knew I was surely going to die, etc.  

We get to the ER and they took me straight back, and then the doctor said, you don't have a clot, you have an infection. and he twisted my arm around so I could see where this huge dark red streak ran down from my elbow,.  They drew blood and it turned out my wbc was so low that when the phlebotomist tried to take blood a few days prior and dug around in my arm looking for my vein, I got an infection.  He said I would probably lose my hand or arm because I just had no resources any more, so they transferred me to Huntsville and kept me there on IV antibiots (this time through my port) that's the prob with my doctor's office, they can't use my port, if she'd gotten blood from there then I may not have gotten the infection.  Anyway, they keep me there three days and I am getting ready to check out when the doctor comes in to tell me my red blood cell count has now crashed.

Now, this is only one week since my last transfusion.  He does another transfusion.  Ther reason this is scary is because when I was GETTING THE RIBAVIRIN, I was transfusing every other week.  So now I stop, and my blood count won't even stand up a week?  And this is with the 40,000 units of procrit twice workly.  He said my bone marrow has just been suppressed and we'll have to wait for it to start working again.  I am just a little scared, I hadn't counted on this.

[merryBe]

I'll start praying for you right now.

mb

[meki]

OH babe --- HUGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

OMG -- you just hang in there - we love you - and we're all sending you a ton of hope, prayers, wishes and good thoughts!

We're here so you just take care of yourself.

You're a strong woman - you can do this.

Much love,

Meki

[pigeonca]

I just turned on the computer and found your post. I'm lighting a candle right now with wishes and prayers for your speedy return to good health.  All my thoughts are with you.  Stay strong.

Love,

pigeon

[CockSparrow]

The Riba is still in your system and will be for a little longer. So hopefully its just that causing the need for another transfusion.
Hopefully the low whites will begin to recover now that the IFN is out of your system. Option B is not worth thinking about.

So hope it all works out for you
CS

[charm27]

My thoughts and prayers are with you.
Get well, your a tough woman!

[mikesimon]

Words seem so inadequate considering all you've been through. I just hope this resolves quickly for you.
Mike

[working dog]

good luck with everything...we'll be thinking about you...billy

[zazza]

You sure have had a tough time. Hoping that from now on it will only get better and better.

[Rosebud41]

I will start praying immediately.
I know that God answers prayers and where two or more are praying he is there.
I am agreeing with the other here praying that you will be able to indure the
stress of this situation and that your healing has already started.

I am thinking God for your healing even before it appears.

God Bless You

Rosebud

[JennyPenny]

Hang in there sweetie. The same type of thing happened to me, minus the infection, and it took some time, but the aranesp and neulasta got me through some pretty rough times until my own marrow started to work again. It took a couple of months.

[Andiamo1]

I am so sorry to hear this.  I will be thinking of you.

You are a very tough lady to have gone through all you have and I am sure that strength will carry you through this.

Eric

[Trish77]

I'm so sorry you are going through this.  I had hoped your tough times were coming to an end.  I've always admired your humour and fighting spirit in spite of all your difficulties. Hoping for miracles for you, you surely deserve it.

My thoughts are with you also.

Trish

[jmjm530]

Sorry about your problems. If I remember correctly, I was told by my NP during treatment that Procrit can sometimes backfire, stop working, and result in what you're calling bone marrow suppression. I wonder if the 2X weekly 40,000 units could be part of the problem since that is over normal protocol. You might want a second consult from both a hepatologist and hematologist who are experienced in treatment-induced issues like yours. My guess is they might want to start titering the Procrit down to give your bone marrow a chance to work by itself, but frankly this is way over my field of knowledge so just a thought.

-- Jim

[Mary4now]

Oh Alagirl.
I am so sorry to hear you're having so much trouble right now, and it is so good of you to keep everyone informed, I too will keep you in my thoughts for strength and healing.  You have been so helpful to others, take care of yourself. Om Bekanze Bekanze Maha Bedanze  (thats a little mantra to the medicine Buddha)

[fuzzy1dar]

I'm hoping and praying that you recover very soon!

Best wishes to you...
Darla

[anwaar]

Calling family members on your way to the hospital shows us just what a scary ordeal this has been for (((You))).  I hope you're feeling better by the time you read our messages.  However, it appears this type of thing with the WBC will take some time.   It saddens me that you have had to go through so much and still continuing to do so!  You're in my thoughts..

[Willy50]

I'm so sorry to hear about your struggles and this latest issue.  I hope that you can pull through.  I wonder ..... this is a stretch..... but hyperbaric chambers can sometimes help in some situations and their effect can be pretty rapid and non-invasive.  

My thoughts are with you.

Willy

[jools57]

You are a fighter, and have been thru so much!
Lifting you up in prayer!!!

[comeagain]

Enough is enough ! actually its God I´m adressing with those words.
What are my tiny problems compared to yours.
Twice the lord have heard my prayers in a miraculous way. Once my mother who have a heart condition, was gonna rice her med.dos and she always had several and tuff sx by doing so.

I`ve meet her a week after the prayer she had absolutely no idea that I had been praying for her.
I asked her about her sx  she said its so strange it just vanished in a minut last wednesday. I asked if she remembered the exact time ,  she answered around 8 in the evening.( she remembered cause there was a tv program that she was gonna watch starting that time).

The other time was with my oldest daughter , she is a dancer she had got an injury,  she couldn`t bend  forward and she couldn`t lay backwards, she had to keep in a most uncomfortable position. I asked if she would allow me to pray for her she sad yes. I´ve heard that the diciples on Jesus time often preached about the cross before praying for healing ( not a rule though) she must have been in a very big pain because she allowed that two.

My x (zazza) was there at the time and she said don´t start with that religious preaching now again, and this is maybee the biggest miracle of them all. I calmly told her to be quiet and leave the room because Hanna has allowed me to.  And here is the miracle part she emidiatly obeyd and leaved.( zazza has okayed me to mention her name regarding this epesiod)
I just said something a priest had told me before, that Jesus is so full of love that he didn´t  hesitate to drink the bitter cup to the bottom. So by doing so can know us all the way, within and without (that was my preaching) and please kind Jesus make Hanna well.

10 min later she came to the room I was in, and said its a miracle its all gone and I thought she must have had faith because I certainly didn`t.
When asking she said no, and i thought odd can God answer prayers when nobody belive. I thought about that for quite a while I didn´t belived that my prayers was gonna make any differens but I did  belive that the diciples prayers did, and maybee that  little faith was enough.

Back to enough is enough I think you have had your shair so I´m gonna pray that the Lord will hear me a third time and that you sweet, sweet human being will be healed, and protected in the future .

That is if you allow me to?


ps. you may ask your self and its a fair question, why did he ask to pray when he didn`t
belived to be heard? I´m not sure but think my mothers and my daughters pain was to much for me so i just did.

[Wassup]

OMG, Sweetie, just when we thought that all the transfusions were over and you were on your way to a healthy withdrawl (withdrawal) from all that invasive tx, this happend.  I would truly be frightened too.  I'll be doubleing up on my prayers for you now until I hear from you that you're out of harms way.  I'd come to see you in hosp. if I could.  With infection, they barely let immediate family in to visit.  I AM there with you, in spirit, sweetie. Sending much love and many big ol' squeezie hugs, Ant B.

[TeeVee36]

My prayers are with you.  

Peace and Love,
TV

[copyman]

my prayers go out to you. hope you feel better soon. no one deserves to go through what you have. better times coming your way soon.

[scratchinghead]

got my fingers crossed for you

[Trinity4]

hoping you feel better soon.  You have been an inspiration to many of us and wish only good things for you.  
Trinity

[Lady Lauri]

Ohhhhhhhhhhhhh! That's awful. I haven't been on in days (with my petty problems!), a friend e-mailed this and I had to read it, see whats going on with you.
  I've been worried about you, no updates in journal or checking in. I am SO sorry. I'd have been every bit as scared as you. That's very shaking and very odd.You have had such a hard tx.

What have they said about your hand when they released you?
Did they say it would stop, not spread anymore? With your blood disorder already, I'm sure yours will take more time to work again, build up. I like Willy's idea, hyperbaric chambers, please do ask about that. I pass one at Shands every time I go, doors often open, they can do some amazing things.
  I feel so bad for you :(
Send you my prayers, healing thoughts, LL

[alagirl]

Oh my God you guys, thank you so much for all of your thoughts and prayers and kind words.  I am really overwhelmed.

I also have to say that regardless of how difficult the course of my treatment has been, I don't for one minute regret doing it since I have every reason to believe its been successful.  And I'm really starting to feel better already being off of the treatment drugs even if my bone marrow hasn't figured it out yet.  

I forgot to say that when I was in the hospital they gave me two shots of neupogen back to back (which I could have done without pain and suffering wise but my wbc count is really high now).  Ok, here's a question.  If my bone marrow was supressed, how could it react so quickly to the neupogen?  anyway, I haven't seen my own hematologist yet, I'll see him early this week.  The group hematologists I had in the hospital weren't as intelligent as he is, so I'm anxious to see what he has to say.

Jim, I have thought about something like that too, interesting to talk to him when I get to see him.  

[alagirl]

And also folks, although I'm a little concerned about my red blood cell count and getting de-ironed and whatnot, I REALLY don't for five seconds think that I've gone through more than anyone else.  I hesitate to even say anything sometimes about my little anemia deal because in the grand scheme of things, I just feel so fortunate to have been able to treat so quickly after getting hepc and not to have a lot of liver damage, etc. when so many people have treated so many times, and when others have critical levels of liver injury.  

[meki]

Super hugs - and glad to know you're on the mend chickadee.

We need you around...

Meki

[zellyf]

I've followed your story for a while now and I wish you great success.  Sounds like you're bouncing back from your recent bump in the road.  

[frijole]

I just hate to hear of this ultra wretched side effect.  You are not going to lose your hand , are you?  (did I read that right)?  When you said your resources are gone - that worries me too?  Does that mean you will get less than adequate care?

I am sorry, I don't check in frequently enough to get whole stories but it sure seems like you need to be admitted and watched for this one.

I am not terribly religious, but sending all my ju ju vibes I can find your way to heal.

comeagain - I am frijole - I consider myself a good friend of zazza and I am glad to see you here.  Lots of good info and of course, encouragement along the way.  You are starting retreating?  Good luck on the journey.  Are you doing 72?
frijole

[alagirl]

no, the hand is great now. They told me if I hadn't gone into the hospital I would have risked losing it because I just didn't have any white cells, and I didn't have any upcoming either so they felt that trying to treat me outpatient was too risky. The two neupogen shots put my white cell count up into the stratosphere (and made me hurt in bones I didn't know I had) - plus they gave me a bazillion bags of IV antibiotics - with names I've never even heard of before, and I thought I'd heard of them all, and they kept switching off between the antibiotics.  Anyway, it all worked.  My white blood cell count is high now though that I think I'll be ok on that.

If I can just get my red blood cells to play nice then everything will be ok lol

[Willy50]

I'm so glad that you checked back in and let people know you were going to be alright.  It's odd worrying about people you don't even know but I think it happens a lot on these boards.  Thanks for sharing the good news.

Willy

[kcrandy]

my prayers will be with you and for a speedy recovery.

thank you for helping me to realise that we are all in this together, and with that we all can overcome anything.  your words are trully inspiring!   : O )

[Deb_c430]

Oh geesh I have held my breath the whole time through this post.

I am glad you are on the mend, been thinking and praying for you and will continue too.

You been through the wars my friend, you need a break, your body must be exhausted.

Take care of you and keep fighting, you are inspiring and one heck of a woman!

Hugs

Deb

[JennyPenny]

I'm so glad you are doing better. Neupogen works very fast. It stops working when your own body takes over. That is when you see the levels of neutrophils possibly coming back down. Sometimes you need to retreat and sometimes just one or two injections are enough. I had to retreat quite a number of times until it stabilized on its own. So don't get frightened if your WBC falls again. That is normal. I liked the neulasta better because it was only one injection every few weeks.

[JennyPenny]

Me again. I'm wondering if I gave you correct information.

What I explained is what my hematologist told me about Neulasta. I am not positive it is the same for neupogen although I think it is. Sorry for the confusion.

[mayday557]

Honey ~~~ I hate that when that happens !!

I came down with pnuemonia (pneumonia) and was hospitalized for 10 days.
My reds and platelets plummeted so I had 3 bloods and one platelet
transfusion - and I did feel better after that.
Thank goodness I have a good insurance plan.

My specialist has taken me off tx...and I'm not a candidate to re-try it.

He said it is too risky incase my platelets drop again and I have varices in my throat.

He did refer me to another specialist who has a little more experience than he does
re: 'c'.

Its a long and tuff row to hoe for us all.

[Wassup]

:} < that's me smiling at the fact that you're not losing any body parts this week.  Thanking The Big Guy, for His positive response to some heavy duty prayers from this lil Ant. Whew, you sure had us worried that time, Cutie!  You just gotta stop getting so sick (yeah,like you had any choice in the matter). anywho, My poor old knees aren't what they used to be, so wouldja try real hard to be well. Thanks for giving this request your best shot.  Love 'n' hugs, Bevy