if you look back in postings you will find where i documented my trip of over 5,000 miles last summer.

i infused before leaving but along the way i got sick. i found when i got to a larger city i called an ent and they worked me in after explaining the story. they were great in all cities, and the docs were wonderful.

we bought a camper and i now am able to travel again. i dont do well staying in hotels or motels and i stay away from airplanes if possible.

we were gone for 5 wks last summer, this summer we have already started planning and we will be gone 8 wks and will travel over 6,000 miles. i am talking to my hemo doc now and we are planning on setting up an infusion halfway through the trip. i have to have it all worked out before leaving, but that should not be a problem since my husband and sister have already starting planning.

he will contact an infusion center or doc's office where we think we will be and we will spend a day or 2 there. we will plan it somewhere so everyone else can spend the day seeing the sights and then just pick me back up when i am done.
i will also tell my internist and give him a heads up in case i need him to call something in in case i am somewhere there isnt a doc available.

i love to travel and for several years i did not travel. i usually had to use all my time off resting so i could make it through work. i am retired now so it has made a big difference.

we bought a camper and i am not exposed to germs all the time. and even if i am feeling yucky, i dont have to haul all my luggage around it is just right behind me! the camper has made traveling so much easier for me. i dont have to eat out all the time limiting my food exposure. i am recovering from a 3 day stomach virus right now, so eating food only i handle is a plus for me.

buddamind travels quite a bit, he may have some pointers.....

Hi Blessings! We love to travel. I generally try to take it easy on myself - don't over stress or over exert myself ...take a can of Lysol and spray the air, all the doorknobs, faucet knobs, etc... this last time I did take a bottle of antibiotics with me - just a good idea. I tend to dress on the warm side now, noticing that I can't handle the cold like I used to be able to, and when I get chilled, I can wind up with a sniffle and sore throat which leads to more problems... you might want to have on hand immodium. Oh and importantly, my Neti pot goes with me everywhere! Have fun with your travels!

Oh yeah, and I try to make my plans for right after an infusion. I get my infusions every five weeks.

When we vacation I plan my infusions for the several months before to make sure my infusion is not due while I am on vacation. We'll shorten or lengthen it a couple days each month so I get my infusion a couple days before I leave.

My doc always give me a prescription of a broad spectrum antibiotic to travel with. Since I have ti with me I can start it immediately if I think it's needed.

I all to often get infection when I fly. I'll never know if it is from the recirculated air, In all probably there is someone with an infection some where on the flight, The other explanation is the change in air pressure stirs up my sinuses and some bug that has been lingering without causing trouble wakes up . . .

I used to fly at least 100 times a year . . .now I avoid it if at all possible. I've gotten to the point where if it is less than a 10 hours drive, I'll always drive rather than fly. Then again I'm so old that I remember everyone wearing a tie and jacket or dress for air travel. When I was just starting out I spent over 200 night a year in hotels . . .so for me travel has lost a lot of its glamor.

@Hyponsis, This is probably none of my business, but may I ask why you are on a five week infusion interval?

Here is a quote from the AAAAI tool kit, their policy statement in IVIG. it is a petty strong statement.

"Frequencies of IVIG infusions of greater than every 4 weeks have not been adequately studied

Using infusion intervals longer than every 4 weeks is not recommended in any of the FDA approved licensing materials and would be consistent with medical malpractice."

The entire statement:

"Guiding Principal 3: Frequency of IVIG treatment - IVIG is indicated as continuous replacement therapy for primary immunodeficiency. . . .
There are a number of considerations that can be used to guide frequency of dosing IVIG for patients with PI. There no studies, however, that provide guidance other than that IVIG should be
initially provided to patients with PI every 3 or 4 weeks. The dosing interval may need to be shortened to improve clinical efficacy and improve outcome. As there are no tests that can guide this
decision it is currently based clinical status of the patient. For example, a PI patient who is repeatedly experiencing infections in the fourth week after IVIG treatment would be appropriate for treatment every 3 weeks. A recent anonymous survey of our membership in collaboration with the Immune Deficiency Foundation has determined that 87% routinely treat patients with IVIG every 4 weeks.
Frequencies of IVIG infusions of greater than every 4 weeks have not been adequately studied
Using infusion intervals longer than every 4 weeks is not recommended in any of the FDA approved licensing materials and would be consistent with medical malpractice.

Here is a link to the AAAAI tool kit.
http://www.aaaai.org/members/resources/initiatives/ivig.stm

Mark, with the respect I have learned to have for your knowledge on the topic of CVID, I don't suspect there is anything I would consider "none of your business" as far as my cvid is concerned. In fact I am grateful you stepped in to inform me.

I am shocked at the info you have just provided regarding the frequency of receiving IVIG. When I first started IVIG, and for the first two and a half years, I was getting it every three weeks. Then my doctor changed the order to every four weeks, which lasted for about six months. In October, he said my levels were staying adequate and he recommended every five weeks.

I have to admit, at first I was surprised because at four weeks I started having more sinus infections... in fact it seems I've been on Doxycycline for most of the past year. I was actually going to confront him on my next appt in March, and tell him I had been doing so much better every three weeks, and now at five I was sick all the time and could he explain why I would have to be at 5 weeks, levels irregardless... However, the past couple of weeks I'm starting to feel better than I've felt in a long time... almost like I felt when I was getting it every 3 weeks - which was pretty darned great. So I decided I'd study myself between now and March...

Mark, that AAAAI tool kit statement IS strong... "Using infusion intervals longer than every 4 weeks is not recommended in any of the FDA approved licensing materials and would be consistent with medical malpractice. "... and I'm sure my hematologist has no clue.

Thank you Mark for arming me with something solid to confront him with... like Kelli I am with Kaiser and I was wondering if they were trying to save money. And I may need to get another doctor - though it would be sad because I've come to really like this one, as a human being.

My son and I just went to a three week schedule

i have been at 3 wks for the last few yrs it sure does keep down the need for antibotics.

Thanks for the tips. I have to travel for work this month and although I can't time my infusion any better, I will ask for antibiotics. My sinus infection recovery is taking longer than normal though this time. Tried a new antibiotic and I don't think it's working.

If your infection is taking longer to clear you should have it cultured . . .not to say YOU are not cultured. If a doc gives a PIDD patient an antibiotic without culturing it, he is talking a guess., it may well be an educated guess, but it is a guess. Since we get so many infections, he shouldn't be guessing. Have him run the cultures and see what can kill your bug. Before your bugs builds up resistance to a lot of antibiotics.