I'm confused about anti-rejection meds PRE-Transplant

[Cordelia]

So recently I find out that my private extended insurance won't cover anymore than $5,000 for transplant medications post transplant. I was talking with my transplant social worker today and he tells me today that I will have to go through 'another' insurance after mine runs out. Okie dokie, no probs. However, he tells me something that I have never, ever, heard of and it kind of freaked me out and I'd like to fire off the question here:

Has anyone here on this forum taken anti-rejection meds PRIOR to your transplant? I have never, ever heard of this and its something I was not made aware of until.......today! What the heck?!

Please tell me the benefits/pros/cons to doing this prior to the surgery, if anyone can tell me, I'd love to hear your stories if you took these meds prior to your transplant-thanks!

[okarol]

Re: immunos prior to transplant: I have not heard that before. Is this info from your insurance or your transplant team?
I cannot remember so please refresh my memory.
Do you have Medicare yet?
Have you been approved for transplant? (they usually won't if finances are not lined up.)
We never spoke to our insurance. It was all handled by the hospitals billing dept.

 

[Cordelia]

I'm in Canada. OHIP is our main insurance, the surgery will be covered. I'm not worried about that....I'm approved for transplant..... It's my private insurance through my husband's work benefits that will be covering my transplant meds.  I will be dealing with another insurance company because my private one will only cover up to $5,000. My private insurance will only last 2 months at $5,000 since transplant meds can cost two thousand easily per month.

I'm royally confused now about having to take the medications prior to surgery, I'm soooooooo confused as to why! I went into such a shock and a daze I never really got a proper answer as to the 'why' PRIOR to surgery.

My social worker (I heard it from my transplant team) heard my response: Say What? HUH?! I literally came through the phone in shock!!

I'm beginning to feel like my life is a soap opera

[kellyt]

The first time I took my anti-rejections meds was the morning of surgery.  I started my other stuff the night before (Prednisone and  stuff).

[okarol]

Jenna was the same - they started immunos the day she got her transplant.

I thought people in Canada have free medical care?

There is a patient assistance program for prescription meds - see if you qualify - don't know if there's a Canada number
http://patientassistance.com/B1020-cellcept.html

My husband buys some of his migraine meds from Canada - they are cheaper. 

[Cordelia]

Okay, the night before sounds reasonable. Here I thought they were meaning like a month in advance or something. Makes sense now. Thanks for the insight. Yes, healthcare is FREE in Canada, but the drugs are not free, unfortunately.

[monrein]

No Cordelia, the drugs aren't free but most provinces have assistance programs that are geared to income and help enormously.  Ontario has the Trillium Drug Program and you apply, get accepted, receive a quarterly deductible based on your income and once that total is reached (it's calculated on family income) you pay only $2:00 per prescription after that. 

[Cordelia]

Yes,  I was recommended recently to try Trillium, that's what I'm looking into I wasn't sure how much it would cost but that sounds reallly, great for the dispensing fee! Through Greenshield, which is my private insurance, I pay a $15 copay, which is still pretty reasonable! 

This morning I had the online application printed for me to complete the application

[Marina]

I  didn't  start  taking  any  anti-rejection  drugs  pre-TX. In  fact I had  never  heard  of that.
   I  was  given mega  doses  at  time of  TX.

[rsudock]

I have never heard of taking anti rejection meds before transplant either but maybe what the neph means that even after your transplant fails some centers still keep you on the antirejection drugs until you get another transplant or get the transplanted kidney taking out.

I am getting transplant number 2 and I am still taking transplant meds to help protect me from the antibodies the first transplant might make.

Just a thought...

xo,
R

[Cordelia]

I'm wondering if my social worker meant like the night before. I honestly thought he meant like months in advance or something and I honestly thought that didn't make sense at all. I will definitely have to ask about this once I get to my transplant hospital again.

[Marina]

I have never heard of taking anti rejection meds before transplant either but maybe what the neph means that even after your transplant fails some centers still keep you on the antirejection drugs until you get another transplant or get the transplanted kidney taking out.

I  have  never  heard  of  patients  taking  anti-rejection meds  after  a  failed  transplant.       There's  nothing  to  keep  from  rejecting.    I don't  see  the  point  of  taking  the  meds.  The  only  one  I  would  think you'd  continue  to  take  is  prednisone  (if  that  was one  of your  meds)  for  a  short  period  of  time, since  prednisone  can't  be  stopped  completely  at  once.
At  my  center they  don't  remove  a  rejected  organ  unless  it's  rejected  withing  6 months  after  TX.

I am getting transplant number 2 and I am still taking transplant meds to help protect me from the antibodies the first transplant might make.
Just a thought...
xo,
R

I'm  confused  again!   I  didn't  know  anti-rejection   could  do  that. In  fact  if that  was the case,   after  a   graft  fails,    our  antibodies  wouldn't  be  so  high.

[monrein]

Never took any meds transplant meds til after transplant.  I'm thinking that they want you to apply for Trillium Drug program BEFORE transplant so that all will go perfectly smoothly with payments afterwards.  Especially if it was the social worker who said this..and of course she/he might be confused as well as confusing.  However, what I'd do is call and ask for clarification and if the same (strange) stuff is said ask her to ask a surgeon.   Which hospital do you go to if you don't mind saying?

[Cordelia]

I'll definitely be calling to clarify. Yes, they do definitely want me to apply to Trillium this summer to get the ball rolling. It takes 4-6 weeks for the application to be processed. I think I will send it xpresspost  because of the mail strike in Canada

When I call, I will be calling my transplant co-ordinator, not the social worker when I do