Insurance review

[kellyt]

I totally understand.  My IVIG treatments for the CMV were about 18,000 each.  If I get CMV my insurance company ought to sue the hospital.  ha ha

I pray the treatment worked, Paris.   

[paris]

Went to UNC this morning for the antibody blood work.  I am not good at waiting.  And the only news I have gotten for the past four years regarding bloodwork, has been negative --- I am trying to think positive today.

[okarol]

  Keeping good thoughts here paris!!

[monrein]

Sending positive vibes Paris.  I'm so hoping this works for you and you get to move forward which is only what you deserve to have happen.   

[Sunny]

Thinking of you Paris and praying the treatment worked.

[Beth36]

I hope all is well and you are feeling better!! My mom got very very sick from the IVIg and the plasmapheresis....keeping you in my thoughts and prayers...
 

Beth

[okarol]

  Waiting for news paris, hoping for the best!

[rose1999]

Paris I've been following your journey and just realised that I have been so engrossed in it that I haven't actually posted my own love, prayers and positive wishes. I hope you know I wish you all the best and send you buckets of love  Rose xx

[David13]

I am waiting with you, Paris, and hoping for nothing but the best news!   

[paris]

Thanks for keeping me company while I wait.          I have been so excited for Jess, that it has helped me not thing about myself. 

Hi Beth,  I did not expect the IVIG to make me so sick.  I thought I would just roll right through it!  But, anything to help the PRA.  I look to your Mother for inspiration.  Her story helps me look ahead.   

[Beth36]

Yeah, my mom had to have an epi pen handy because it was like an allergic reaction. BUT all was well after a few days....I am so happy you are finding some treatment! I'm pulling for you!!

Beth

[paris]

Co-ordinator called today. Results are not in yet. She explained it took time and lots of testing.  She said it will be next week before we know the PRA. 

[okarol]

Oh the waiting! 
I am keeping good thoughts paris - wishing you all the best!!

[Beth36]

Well doo doo....I was hoping for some news, too!!! I am on pins and needles!! Thinking good thoughts for you, Paris!!!

Beth

[Wenchie58]

Ok, Ive been patient and trust me that's tough for me.  How long has it been Paris...the longest it ever took mine was 9 days.  I have antibody testing once a month now....and never more than 9 days.  Where's Miss Kit and her big stick...I think they need a bit of motivation!! 

[David13]

Sorry to hear about the delay, Paris.  I am waiting with you and hoping for the best!   

[paris]

It has been 8 days.  Seems much longer.  If they would just give the co-ordinator the results instead of going to the surgeon first, I think I would know by Friday.  But, he is the head of the program, so I am sure he wants to have first look.  My results will effect his total sucess rate, so I know he wants a good outcome.   And as he has reminded me, they haven't had good results with PRA of 100.  I just want to prove him wrong.  I am not waiting for the phone to ring this week.  And if it does, it will be a nice surprise.   I keep thinking positively (especially since Wattle's great news) but I am also very realistic.

[paris]

I need to vent.  I have had to call the co-ordinator every single week.  Always some excuse. Surgeon was out of the country, etc.etc.  Today, I called her at 10 am. She said that she and the surgeon were the two on call today and as we talked, she was emailing him regarding my results.  She SAID she would call me back one way or another, to at least tell me something.  It is 5:20 --- that is right ---NO phone call.  Seriously, I have been going through testing for 4 years now.  I am not stupid and I am sick of being last on everyones list ( I should be with Kimcanada!!).  A simple yes or no on the success of the infusions is all I want to know.  I am now wondering if the vials ever got to the lab.  I know the results don't effect their lives and there are people much sicker than I am.  My patience has worn thin, or just worn out.  And now it is Friday, so there won't be any calls over the weekend.  It is no wonder that some just give up -- this part shouldn't be that hard.  Just tell me they didn't work so I can move on.   Sorry, I needed to scream for a minute and no one is home to listen to me!!   

[cariad]

Oh, Paris, I am annoyed on your behalf! This is awful. Did you tell the nurse coordinator how you are feeling?

I have been in this situation countless times, and I cannot believe how easy it is for nurses and doctors to swear they will call you back immediately and just forget all about it. And it always seems to happen on a Friday, doesn't it?

The next time you talk to the nurse coordinator, if she does not have an answer for you, please just level with her. Something to the effect of: "I know everyone is busy there, but I'm sure you can understand how crucial this one bit of information is to my stress level. I really can't wait any longer; I need to know now." The one-human-being-to-another approach has worked for me in the past. Can't hurt.

Beond that, all I can offer is     

Good luck!

[David13]

I'm so sorry, Paris.  You have been beyond patient.  This is well past the a reasonable timeframe for your to have received your test results.  I would call first thing Monday morning and DEMAND your results.  No more fooling around with those clowns!  They either have your results or they don't, and you deserve to know either way.

 
 

[rookiegirl]

Paris - I'm so sorry you have to go through the run around and play the waiting game.  I pray you will get your results ASAP.  Thinking you always.

[paris]

It really is a silly situation.  I don't like my new co-ordinator.  My orginal one is the co-ordinator manager. So, I think I will call her on Monday.  There is no excuse for 4 weeks to go by without having the results.  The last infusion was June 11th. The bloodwork was July 6th.  I have never waited for any results this long.   I really don't care that the surgeon was out of the country --- wouldn't we like to be out of the country too?    I have made so many calls to Dawn (co-ordinator) -- probably 10 calls and as many voice mails this month.  I thought if I bugged her enough, she would want to give me the results and get rid of me!  Nope, she is just ignoring me now!    Can I ignore the bills from the center?       Oh well, Monday will be here and I will start the calls again.   (because I have nothing better to do than make repeated phone calls!)

[okarol]

Post the phone number - we can all start calling! 

[rookiegirl]

What is going on with them?  Geezz!  I'm so sorry Paris.

[paris]

I called the office at 9 am and had to leave a voice mail.  The co-ordinator did return the call around 10.   The delay was due to them running more and more tests.  The results are that there is "minimal" change in the PRA.  Not enough to measure.  They will run another set of tests in October with the hope that the drugs they dumped into me will still keep doing their thing and may still help.   So, it was my birthday yesterday -- not the present I wanted to get!  And Zeke had his MRI yesterday, so it was am emotional day.  Oh well, we gave it a try -- that is all we can do.   Thanks for helping me during this frustrating period.