I've recently been diagnosed with Type IIB VWD and so far have been responsive only to Humate P. I've been advised to carry a supply if I leave the country, especially to places where the drug is not readily available. I'm curious if anyone travels with the drug, how difficult it is to mix and find someone to administer in an emergency. Thanks for any input!
What you desperately need to do is learn to adminster to yourself. I took a little course and learned the correc way to get into veins. Its the best thing I’ve ever done. No more Emergency rooms or looking and waiting on a nurse. I have now taught my son to administer the Humante P to himself. Hes 15 and been doing it for 3 years now. Its awesome. It will become 2nd nature. Believe me, practicing on your own child wasnt easy. I hated every minute of it. We practiced with a I V flush solution while learning. This allows you to actually go inthe vein and push medicine in until your ready for the real meds. Theres alot of benefits to self infusing. You dont need anybody to assist you. Learn hiw and youll be so thankful
I have Type III and I take my Humate with me whenever I go out of town. I have a letter from my Hemotologist stating my disorder, medicine, dosage, etc. So if I have to go to a hospital, they will know what needs to be done. I have recently, within the past year or so, learned to self infuse. I pack up my Humate & all the needed supplies that way I can treat myself if it’s a minor bleed. I do keep it cool, with ice packs while traveling. I would highly suggest you take it if going out of the country. Other countries do things very differently sometimes.
P.s. It is super easy to mix & administer. I’ve done it my own for little over a year but have watched it be mixed for 26 years. I’ve had to show a few nurses what to do even lol. Only thing I’d say, is make sure you keep some extra needles (that attach to a syringe) to draw it up in case the filters that come with the factor doesn’t work. I run into this on a rare basis and have to mix on my own.
Thanks so much! In the past 10 days, I've secured a supply of the humate P and already started an IV on myself. Quite easy with a butterfly set up. Now I've got to be sure my husband can do it as well. Thanks for the info and encouragement!
BondGirl007 said:
P.s. It is super easy to mix & administer. I've done it my own for little over a year but have watched it be mixed for 26 years. I've had to show a few nurses what to do even lol. Only thing I'd say, is make sure you keep some extra needles (that attach to a syringe) to draw it up in case the filters that come with the factor doesn't work. I run into this on a rare basis and have to mix on my own.