Acute intermittent Porphyria-also infusion treatments while in the "world"

[mb1976]

Hi all,

Last October I was diagnosed with Acute Intermittent Porphyria. This is a rare genetic blood disease and I wondered if anyone else here might have this or know someone who does. After fighting it for about 4 months I finally got a doc who was willing to do something besides say "um that's rare and I'm not comfortabe treating you". Things are much better now and we are planning a trip to the world in September. I have 1 liter of D10 infused into me twice a week at home. I have a power port and an ambulatory pump that I just strap around my waist and live life. I also wondered, have you ever seen or heard of anyone getting an infusion while wondering the parks? I'll probably do it at night so it doesn't interfere with things but, it does take 10 hours to do so I may have to break it up a bit. Anyway enjoy your days.

 

[Regina]

I don't have any advice to offer but I do want to say I admire your attitude. Clearly you're not letting this disease rule your life.

I hope that you're able to work out your health regimen and have an amazing trip in September.

 

[cgrobin]

An oncology nurse of mine has to gets an IV drip 24 hours a day. She carries around what looks like a purse on her shoulder, and it runs all the time.

I did a little Googling and found a site with list of international support groups. European Porphyria Initiative

There is also an American Porphyria Foundation.

Good luck to you.

 

[Mackey Mouse]

We have not infused while at WDW.. but when Tom was having treatment, he wore a meter around his neck, in a little black sack so to speak, and his chemo was administered 24 hrs a day. We tried to carry on as if it was not there, we were not at WDW as his stamina was not quite up to it, but he even slept with the pump. He also has a power port and still does.

If you can do it and feel comfortable doing it while in WDW, then I say go for it. I would do whatever I needed to do to maintain my health and live life normally.. Bravo to you.

 

[shoes99]

My sister brings her pump, her tubes and syringes as carry-on on the airplane. She has to infuse 12 hours per day. She has her cans of nutrition shipped to the hotel, and only carries a few on the plane. She times it so that most of the treatment is done in the hotel room, but will wear her backpack around if necessary. She finds the first aid stations at the park helpful if she needs to tend to her J-tube...
She is a member of the Oley Foundation for tubefeeders and their website has lots of info and stories. We are planning on going to the national convention in St. Petersburg, FL June 29th to July 2nd.
www.oley.org

 

[thatkid]

i have hereditary coproporphyria.
I have a feeding pump that runs 24 hours per day, and am taking it with me for my disney make a wish trip. Most people cant even notice stuff like that, and as long as you're comfortable carrying pumps with you, go for it.
ps have fun on your trip. this disease does stink. haha.
=)

 

[mb1976]

Hi all,

Thanks for the replies. I've decided I will just try to infuse and night instead of carrying the bag around. I'm paying enough I don't want to miss a ride because of it! I'm going to infuse on the flight out. How does security handle the pump being attatched to you? Do I need a not from my doc? Thanks for the help.

 

[mb1976]

Are you by chance on the yahoo groups prophyria group? I know a girl on there from canada that is getting a wish trip with porph. She just got a tube replaced as I recall.

 

[Mskanga]

Definitely do get a doctors note about the pump for the flight.

 

[mb1976]

That's what I needed to know. Thanks.

 

[thatkid]

Are you by chance on the yahoo groups prophyria group? I know a girl on there from canada that is getting a wish trip with porph. She just got a tube replaced as I recall.

haha, thats me!