Tired of Waiting

I can't get in to see a hematologist at UAB for a couple of months and my hematologist is going to China to visit relatives for a month.  I had an appointment with him Monday but my gastro was running late and I missed it.  (Despite assurances from the scheduling girl that they would be sure to get me in on time so I wouldn't)  Then they put me in the hospital with assurances that they would tell him I was there so he would come by and see me.  Nope.  Didn't do that either.  They suck kind of.  a lot.

Remember about a month ago when I said that I went to the ER and my iron was normal and I was all happy?  I don't think my iron was ever normal.  I think they just looked at my iron levels and not my ferritin.  Because my iron is normal.  Its my ferritin that's high.  837 to be exact.  And... I don't want to wait another month to deal with it because I am hopeful that if I can reduce it my headaches, which are just mind-numbing and almost an every day occurance,  will be better and my hair will quit falling out.  Maybe.  I mean, its worth a shot.

So I've decided to go to the bloodbank tomorrow.  And lie like a big dog.  Hey.  Don't judge.  My family has given a LOT of blood to the blood bank over the years.  And they'll catch my antibodies and reject mine soon enough after I give it but it least it will reduce my iron load.  It's better than trying phlebotomy at home.  Which was my other desperate idea.  And if the one bloodbank doesn't reduce my iron load enough, I'm going to wait a couple of weeks and go to another blood bank.  Based on my last phlebotomy experience a few years ago, I think one or two units should do it.  Ok, go ahead, bring on the comments.

[Andromedae]

"So I've decided to go to the bloodbank tomorrow.  And lie like a big dog.  Hey.  Don't judge.  My family has given a LOT of blood to the blood bank over the years.  And they'll catch my antibodies and reject mine soon enough after I give it but it least it will reduce my iron load.  "

Worst.  Idea. Ever.

Maybe the blood bank will make a mistake.
Maybe the test will give a false negative.
Maybe the blood bank is a little crooked and just doesn;t care enough to do a proper test.

Whatever.
What you are doing is intentionally committing to contaminating the blood supply and hoping that the controls out there will catch it.  And you are doing it to benefit yourself    
because you think that maybe drawing some blood may lower ferritin levels that you are guessing about.

To say that I can not respect such a decision would be the absolute nicest way I could put it and probably not truly indicative of my actual feelings.  But hey, don't judge me

.

[alagirl]

I'm SVR.  So even if they did make a mistake I wouldn't be contaminating the blood supply would I?

[alagirl]

And I don't think the blood banks are crooked for God's sake.  I've had at least twelve transfusions in the past year.  So I hope they're not crooked.  My biggest moral problem with what I would be doing is that I would be using taxpayer money to do phlebotomy when my blood wouldn't be able to be used because it would be thrown out when it was found to have antibodies.  I don't see myself as a danger to anyone because I don't subscribe to the idea that people who are SVR can still contaminate others with hepc.

[alagirl]

because you think that maybe drawing some blood may lower ferritin levels that you are guessing about.
------------------------------------
and no.  I KNOW that drawing blood will lower my ferritin levels.  No guessing there at all.  I'm not sure where you came up with that one.  I have very high ferritin levels.  Phlebotomy is the recommended way to to lower them.  Period.  

[jmjm530]

I also think it's a very bad idea on a number of levels.

The bigger picture, as I mentioned in your other post, is that you really owe it to yourself to consultt with doctors who have more experience treating large numbers of Hep C patients.

They will know if you actually need a phlebotomy, and if you do, they will get you one fast. Working with hematologists, gastros, etc,  without direct, large-population Hep C experience -- or self diagnosis for that matter -- can potentially be dangerous. You can end up doing things not necessary or omitting things that are necessary.

Personally, I'd make some calls to Gish or whoever you consulted with last time on HCV and get their advice on phlebotomy and some of your other post tx issues. Alternatively, find another teaching hospital hepatologist to consult with. Explain to the nurse -- you can always get the nurse on the phone if not the doctor -- your exact situation, and if they feel it urgent enough, you should get an appointment right away. I did when treating and important decisions had to be made. But the quickest I would think would be a phone call, email to the out of town liver specialist who already saw you.

Bottom line, better to do some phone calls and pehaps some traveling than to risk the blood supply as you arent officially SVR since it's been less than six months since you stopped treating. But even if you were, we're still not allowed to give blood.

BTW I dont remember you posting that you were UND at three months post treatment via a sensitive test? If you were, as you suggest, then congratulations! Blood bank issue aside, it does look like SVR will be yours!

Please get yourself to the right doctors and get fixed up. We're all in your corner rooting for you.

-- Jim

[FlGuy]

The hematologist does not have another doc covering his practice while he's away?  That seems strange.  No other hematologist/oncologsts in the area?

[GGraphix]

You were one of the first people to respond to my post when I was initially dx'd. I was scared and alot more naive than I am now. Your insight and words of incouragement helped me come to terms with this thing. I have read your bio and know I am in no position to try to give you any advice. Infact it was reading how strong and couragious a person can be that helped me come to grips with my own fears. I think what you are proposing is probably out of frustration. I feel that someone who is as caring and thoughtful of others as you appear to be could not live with the thought that just maybe you could be the cause of someone getting this. If you truely wish to go thru with this what if after they took your blood you told them you have/had hep and to dispose of it. I honestly hope you get better and kick this sh*t.  

[alagirl]

Yeah he does, I just have noticed that they say things like, "Wait til so and so gets back," unless you need a transfusion or something.  And the other hema's are in birmingham and have a sixty day waiting list.  I am going to try to get into the other folks covering for my guy MOnday though, see what they say.

[alagirl]

That's kind of you to say.  I think I was operating on the logic that there are so many junkies here on "meth mountain" which is really what they call this place that the blood bank screens really really well.  And also on the fact that SVR is a total cure and since I'm SVR, I am no longer a risk to the blood bank even if somehow my astronomical antibody load didn't trigger their alarm system.  Of course that last sentence is wildly and widely debated, even on this forum, so the safest thing to do is to get this done at the hematologist since home phlebotomy is the only other course of action and it seems a little risky.  But all of this iron just sits there and deposits in your organs causing end organ damage and I had extra iron in my liver to start with from an iron overdose four years ago, so I didn't need this.  And its causing my problems.  My hair is falling out all over the place, and this is way too far out to be interferon any more, at least I think so.

[alagirl]

ok well, sometimes you guys come up with good answers to this and one member emailed me that the blood center has to dump everyone's blood in the entire batch if mine turns the batch bad.  Which oh wow, is awful and I would never cause them to do that so blood bank is definitely out just on that basis.  So I guess now I see if he of the long a%% vacations has a partner who would be williing to see me during his month long hiatus.  crossing fingers, I'll call them tomorrow.

jim - they did a sensitive test at the hospital this week.  I was dc'd before the results came back but they sent them to my treating doc.  I really am not worried about the results tho.  I cannot imagine any possibility of me not having been successful having treated for over three months longer than I needed to for my acute status and having been under the three important threshholds for svr w/treatment, low viral load, early UND, and whatever the third one was, I forget, but I had it.

[alagirl]

I know you're going to think I'm being cavalier about my UND/SVR but its just that its kind of like the pioneers going west.  Remember how they had to discard things along the trail to get to California or Colorado or wherever they were going?  Well, I've only got so much room in the worry wagon and between worrying abou my organs stewing in iron and bones swiftly becoming deformed by this apparently very agressive case of RA (I mean, I started treating in Oct, ended in early April and now I need surgery?, whoa!), I just don't have room to worry about my SVR when I feel like its a sure thing within a few percentage points.  Obviously, I WILL look at my testing at intervals, but I'm not worried about it.

[IAmTheWalrus]

I am glad you seem to have come to the right conclusion. IMO it would be wrong to falsify the questionaire (risk factors, etc.) that you answer when donating blood. These questions are a crude tool in safeguarding the blood supply, but more practical that trying to split hairs in individual cases.

I have to agree with Jim about the dangers of self diagnosis and treatment. I hope you can get your GI onboard with this. Perhaps a note on the Med Expert Forum would help?

That said: I think there is a box you can check on the questionaire that will cause them to draw the blood and then discard it, no questions asked. This is to protect the privacy of individuals in a way that they do not need to refuse to donate blood. This is especially true in group-donation situations.

Best luck,
Brent

[nygirl7]

I don't realize how spoiled I am having New York doctors right at my fingertips. This is just God awful and I don't understand why somebody can't help you. Certainly there just HAS to be a hemo somewhere that can squeeze you in? Even if you have to sit there for a few hours and hope for a cancellation or something?

I'm glad you decided not to go the blood bank route. I think that you need to have somebody MONITORING exactly what is going on with your blood and not try to handle it on your own - God only knows what dreadful complication might happen and make it worse!

There HAS just GOT to be a doctor that will take you.  The ER can't call somebody down seeing as how your hemo is away? Someone just has to be handling his patients while he's gone for a month it makes no sense to me!!!!!!!

[alagirl]

I'm going to call my hematologists office on Monday and ask.  You won't believe how STUPID I was this week.  I had an appointment set up with rheumatologist (FINALLY THEY GET ME ONE) for Thursday, not to mention a local weight loss place to help me with my last twenty pounds, because I've lost twenty of the forty I gained during treatment but I just thought it would be fun to have help with the last twenty, or camraderie, or something, anyway...

My girlfriend comes over Wednesday afternoon, and informs me that...  It's Thursday.  Not Wednesday.  I looked at my computer for confirmation.  She was right.

So.  I have missed EVERYTHING.  I am such an idiot.  And that is not the first time lately that I have lost time and just not known what day of the week it was, but I am so disappointed because I REALLY wanted and needed to see the rheumy.  Because not only do I have horrible problems with this R.A. but on Wednesday *** Thursday morning, I woke up with these red lesion/bumps all over my lower extremeties, and some on my arms, but mostly just covering my thighs and calves, and it scared me a little, making me wonder if its some type of mixed cryo. or something.  And it would have been a perfect opportunity to show it to the rheumatologist had I gone.  I even sat in my bed that morning thinking, "its too bad its Wednesday, I wonder if I should go to the ER about these bumps and have them check my kidney functions, or if it can wait until tomorrow when I see the rheumatologist."  This, on the very morning I was actually SUPPOSED to be in the man's office.  God, I am losing my mind.  I swear.  LOSING my mind.  

So today, I was supposed to go to the pain clinic.  So I called around seven to see what time I was supposed to be there, because I thought I remembered it being 8:30 but I just wanted to make certain.  Well, I get a recording saying they aren't there and won't be back until Tuesday.  So OBVIOUSLY I have yet again flubbed an appointment (God only knows when I was supposed to be there - probably yesterday or something).  And those guys are serious about their appointments.  I think if I miss one more they will dismiss me as a patient.  (I accidently missed one earlier this year without calling when I was in the hospital).

And also, I wanted to look up the guy who raped me on the state prison website, to see when he gets out.  Kind of to reassure myself, and hoping it wouldn't be for a long while.  He is presently incarcerated on another crime.  So anyway, I couldn't remember his last name.  I actually had to call and ask my son.  He gets out in three weeks btw.

But anyway.  I am obviously LOSING my everloving mind.  Or what is left of it.  I can't remember what day of the week it is, appointments, anything.  I swear.  I am such a goof.  I mean, it would almost be comical but I am SUPPOSED to be trying to get back to normal life again...

[alagirl]

yeah, rural Alabama doesn't offer much.  You have Huntsville and Birmingham.  UAB has a waiting list a month to two months for both hematology and hepetology.  Huntsville is where my hematologist is but its a matter of whether one of the hematologists there will see me in the absence of my doc.  I am going to call Monday and ask though if one of those guys will see me.

[Marcia2202]

I'm so sorry you missed your appointments.

Just a little suggestion. I have put all my important appointments into my calendar on my cell phone. I put the alarm to have enough time to have a shower and eat something and get to the place... Just in case I  forget I put that extra time.

It has worked so far.

Hugs, Marcia

[R Glass]

I think I will have unprotected sex with as many women I can to see if I am still potent.

[alagirl]

I was able to reschedule with the new rheumatologist for this coming thursday, so that's not too bad.  I just had a complete melt down yesterday when I realized it was thursday and not wednesday and started crying because I don't know, I was just so disappointed, and disappointed in myself, and my best friend called the rheumatologist's office and lied to them and told them that I had been ill (now that part wasn't too far off since I was puking my guts up the night before, something that has been happening all too frequently lately, but I think this time I think it was a 24 hour virus or something), and that I had been in the ER (ok, that part WAS a lie), and that she had been supposed to call and reschedule my appointment and she dropped the ball.  And they let her reschedule for me for this coming Thursday.  And I'll just have to call the pain management folks Tues morn and say a big mea culpa and ask when my apt was supposed to have been and reschedule with them.  I have pain meds to last me, its more just about not upsetting them by my being so irregular - since this will have been the second time I goofed my apt.  I am just so not used to being so flighty but I can't keep anything straight lately. oh, and - I have another ? but I am going to put it under another post heading.      

[medicmommy]

I think Mr. Glass is looking for a spanking! -Trying to kick the anthill like that! Bad boy!LOL  Alagirl seems to be brain fogging as well as seeking desperate solutions for her equally desperate times (I'm agreeing though, not doing the blood bank and keeping Drs in line to make sure she's followed closely is a far better idea)...But thanks for injecting a bit of humor...Silly boy...                                                           ~Melinda

[troubleshooter1]

Look lady, Please find you a good doctor where you live. People can not help you. They don't know! Go to a Doctor as soon as you can. God bless! bye.

[l-horn]

pull the stopper out, find a vein,  and just dump a quart into a bucket and feed it to the dogs. They'll love it.

Or not ....

[ram921]

Aggghhh! That's GREAT!  - really! Yer killin me.

[alagirl]

That's PRACTICALLY what they do when they do the phlebotomy.  Thanks to all of you for bearing with me, my hematologist got back earlier than I thought and he agreed to phlebotomy, which I started yesterday.  Since I have bad veins, they have to do it by a half unit at a time using those large tubes meant for blood tests (that was they can use the butterfly needle with it).  So anyway, I should have a normal iron level again in a few days.