Plasmapheresis as out patient?

[matis_mom]

We just got a letter from CIGNA saying they are approving plasmapheresis but NOT as an inpatient treatment, just as an ambulatory thing.

Has anyone done this??? The letter said that if other issues arose during treatment they would reconsider. I am just wondering if this makes any sense to drive all the way into DC and come back home... My husband might have to find a hotel nearby (we are about 1hr away, but with rush hour traffic in the morning it could take much, much longer).

 

Isabel

[lss]

Isabel,

 

I cannot imagine having to place the line into the femoral artery each day for anyone, much less a child! In order to do plasmapheresis they first need to sedate the person to insert the line. My son had plasmapheresis done last year and I can tell you that taking the line out of femoral artery was not painless. It hurts and once its removed, they need to place lots of pressure on it to stop the bleeding. I would speak with the hem/onc at Georgetown first and find out exactly how a "outpatient" plasmapheresis would work.

 

Linda

[matis_mom]

Isabel,

 

I cannot imagine having to place the line into the femoral artery each day for anyone, much less a child! In order to do plasmapheresis they first need to sedate the person to insert the line. My son had plasmapheresis done last year and I can tell you that taking the line out of femoral artery was not painless. It hurts and once its removed, they need to place lots of pressure on it to stop the bleeding. I would speak with the hem/onc at Georgetown first and find out exactly how a "outpatient" plasmapheresis would work.

 

Linda

Linda,

Thanks for the reply. I will get on it on Monday. I don't suppose he can go home with the line in, right?

[lss]

I wouldn't think so, but I really don't know. When Dr. K does IVIG they leave the line in and wrap it up completely, but the line they use for plasmapheresis is so much larger, I can't imagine, but maybe...

Do you mind if I ask, is this thru Dr. Latimer ordering the procedure?

[bronxmom2]

My son had plasmapherisis at Georgetown last year too, and he had no problems with the main line and definitely could have been across the street at the hotel and come over just for the treatment part, which lasted 2-3 hours per day. It really bothered me to be in the ICU, which seemed like overkill, but that is there policy for any kid who has that main line-- I can't imagine they would agree to do this treatment outpatient-- though, if they would, maybe it would be available to more kids. Our nurse confided to us that the hospital takes a HUGE financial hit for each kid that gets PEX, because insurance reimburses only a tiny fraction of what it costs the hospital.

 

The removal of the line was the hardest part for us too.

[matis_mom]

My son had plasmapherisis at Georgetown last year too, and he had no problems with the main line and definitely could have been across the street at the hotel and come over just for the treatment part, which lasted 2-3 hours per day. It really bothered me to be in the ICU, which seemed like overkill, but that is there policy for any kid who has that main line-- I can't imagine they would agree to do this treatment outpatient-- though, if they would, maybe it would be available to more kids. Our nurse confided to us that the hospital takes a HUGE financial hit for each kid that gets PEX, because insurance reimburses only a tiny fraction of what it costs the hospital.

 

The removal of the line was the hardest part for us too.

Thanks Bronxmom2! That's good to know, maybe it is better that way. I guess I'll just go with the flow. I'll be making calls all day tomorrow and see what I can figure out. Hospital settings definitely make ds more nervous, and it's probably easier to relax outside of the hospital. I just hope I can find a room nearby. We do have some friends that live closer in so that may be an option. I'll keep you all posted...

[LNN]

There's a Holiday Inn a few blocks away that gives a discount for hospital patients (at least they did last summer when we were there). You can find it listed on the hospital's web page here http://www.georgetownuniversityhospital.org/body.cfm?id=230. Looks like the Savoy also gives discounts.

 

I can't imagine the hospital agreeing to pex as outpatient. The biggest risk of pex is infection of the central line. Any insurance co. should know that and I'd hope a call from the doctor directly to the insurance co. could settle that. That just seems so odd for them to say something like that.

 

As for relaxing - Georgetown PICU and Hem/Onc areas do a great job keeping the kids entertained. Both my kids (the one being treated and they one who had to tag along) were much happier there than they would've been stuck in a hotel room. They have crafts, Wii and XBox stations, internet, board games, a therapy dog, a fridge that parents can keep food, a microwave, a parent's laundry and lounge - they really take steps to ease the stress. And one parent can sleep on a cot in the child's room.

 

And yes, removal of the line was the worst for us too, but mostly due to the pain of removing the adhesive bandage (that was stuck to some very very sensitive skin). Make sure they use lots - lots! - of adhesive remover, like 50 pads of the stuff - and it should be much less painful.

 

Good luck!