Travellin' Tips

[JMan]

Hi All

I am hoping to be in the US of A between Oct 25th and Dec 19th (Subject to disgruntled baggage handlers etc)

Though I am aware of the basics of travelling, (insurance, enough tabs and a covering letter from doc etc) does anyone have any tips/advice for travelling. I'm transplanted with a 'stable' (as long as it stays that way) creatinine of around 400 (not great, but so far its keeping me away from dialysis for a while) and hope among other things to see some of NYC, CT, FL and CA during my time there.

Any tips, advice etc for this somewhat daunting (for me anyway:D) trip..

J (just a guy from little ol' England:lol:)

[Bruce]

JMan:

I don't know anything about traveling as a transplant, but I have lived in and around New York City all my life. It's a great place to visit, but somewhat pricey. If you have any specific questions feel free to e-mail me and I'll do my best. As a general rule the city is safer than the media would have you believe and any designer item (Rolex watches, Gucci pocketbooks, etc.) sold off a table on the sidewalk is a Chinese knockoff.

This is the official website for NYC tourisam:
http://www.nycvisit.com/home/index.cfm

Have a great trip.

--Bruce

[amanda in CA]

Hi, J Man, don't forget the meds! I suggest that you have a word about your neph regarding scheduling of meds. around the time difference, since I have a sneaking suspicion that some of my problems on the way to losing my kidney were taking the tablets too widely spaced because of the time change when I visited the UK two years ago. Other more obvious things: make sure that you take your meds in your hand luggage, don't let them out of your sight, carry a doctor's letter with all your meds listed and the reason for why you are taking them. Make sure that you take some extras in case of delays. When you are flying, make sure that you get adequate fluids, nag the cabin crew constantly or better still, get them to give you your own personal supply of water so that you don't have to wait on them getting to you, only to give you that little sip that they call a drink. other than that, I can't think of anything, hope you enjoy your stay, and maybe you will look me up if you are in the San Jose/San Francisco are of Ca.

As an aside, for anyone travelling who is on epogen, were you aware that it shouldn't be passed through an X ray machine? - I read it in the literature that accompanies it. Mine has gone through in the past since I didn't realise this. Probably all it does is denature the protein but who knows, maybe I injected mutant epo?

[JMan]

Hi, thanks for those replies..

Yep the time difference/adjustment isn't one I'd thought of but I guess the way to handle that is to 'tweak' the times gently over a number of days (eg hour or 2 each day, until I'm 'synced' with local time).

I wasn't aware of the EPO issue. Are you sure about this? I will check with my EPO sister but I've not come across this.
Does this apply to the dry powder form, or only when its mixed? And if so what do I need to make sure it 'doesn't' go through the x-ray.
Well my hand luggage has suddenly got a lot bigger if I take ALL my tabs in it. I was figuring in a couple of weeks supply in my hand luggage and the 'stock' in my main luggage.

Bruce thanks for the tip on fakes but I'm unlikley to be shopping for branded goods.. Not my style

[Bruce]

JMan:

Just had another thought while reading the post about Epogen. Here in the U.S. "drigs" is a dirty word in law-enforcement circles. If you're injecting epo make sure you have a doctor's note explaining why you are carrying syringes. They're likely to think yo're injecting an illegal substance into your veins. Enjoy your trip. --Bruce

[oldborris]

Bruce wrote:"Posted: Mon Oct 04, 2004 11:06 am Post subject: travel tips

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JMan:

I don't know anything about traveling as a transplant, but I have lived in and around New York City all my life. It's a great place to visit, but somewhat pricey. If you have any specific questions feel free to e-mail me and I'll do my best. As a general rule the city is safer than the media would have you believe and any designer item (Rolex watches, Gucci pocketbooks, etc.) sold off a table on the sidewalk is a Chinese knockoff. "

While this may be true of sidewalk sales in NY I do sincerely hope that it is not true of all pavement sales. I would be devasted to learn that the Rolex watch that I bought -a real bargain for £7.50 - from a pavement salesman in Tenerife is not 100% genuine. Before buying it I took every precaution and investigated thoroughly. I looked the salesman straight in the eye and asked: can you assure me that this Rolex is kosher, the real thing, guaranteed genuine" He looked straignt [well as straight as he could considering that he was cross-eyed] back at me and said: "Yes guv. On my mother's life". What better assurance can one have than that?

[JMan]

LOL @ old Borris (so sorry you couldn't make it to the NKF conference. It would've been great to have you there)

Bruce, yes I tend to use the words 'Personal Medication', tablets, or medicine, when traveling.. it goes down a lot better than saying.. 'Damn I need to take my drugs!!:)'

thanks.

[JMan]

Hi All

Re EPO.. Amanda I checked with my EPO sister and they said its fine (they've checked with the renal pharmacist) to pass the epo via the X-ray ?? Mind you I have Neo-Recormon brand not EPOGen so possibly there is a difference?

I may well be in the CA area so if we can hook up that'd be great. I'm actually working out places to stay at that end of the trip (end Nov to Dec 19th when I return home) at the moment. PM me with your details and we can sort something out

I won't actually be carrying syringes (just the Pen, some microfine needles and some unmixed ampules) but my unit/EPO Sr now does customs/cover letters as a matter of course (they finally have it set up so that its a case of a few mouseclicks to produce )

Thanks to all who posted replies to my OP

[amanda in CA]

Hi, the information regarding not putting it through the X ray machine was included in the text within the patient information booklet supplied by the manufacturer. Epogen is supplied as a liquid so I don't know if that makes a difference. To quote it says "You'll need to keep your epogen refrigerated or in a cooler with ice packs to keep it at a temperature of 36 degrees to 45 degrees (2 degrees - 8 degrees celcius). It is best to use the original boxes when travelling with Epogen. Do not place vials directly on ice, and do not allow them to freeze. If a vial does freeze, do not use it. Do not use dry ice. If you are travelling by air, do not put Epogen through the x-ray machine. Ask for it to be inspected by hand. Also do not store your epogen in the airplane refrigerator."

I can understand the logic of it not going through the x-ray machine since it is a protein and thus the X rays may be capable of breaking up the protein bonds and changing its structure?

If you think that you will be able to get extra supplies should they get lost, then I suppose it would be ok to put the remainder of the meds in the checked baggage. I suggest that you look into that eventuallity if you do put some into the checked baggage, since it would be a shame to spoil your trip chasing up lost meds. Is it a weight issue? I have always found that my meds. will fit into my hand luggage and I have still been able to carry everything that I need for the flight. As long as you aren't taking the P**** with the size and weight of your hand luggage most international airlines don't seem to worry to much. However, I have found that they are much stricter about hand luggage dimensions with internal flights within the US. Amanda

[JMan]

Hi Amanda (cheers for the PM)

I'll check the patient leaflet for NeoRecormon also. I did check that the NeoRecormen vials are fine to be unrefridgerated for up to 12 hours though... So thats the duration of the trip over..

8 weeks worth of meds for me takes up a bit of space;) (all those neoral and 6 calcichews a day) but I am sure it will be fine:) thanks again for the info

[Mike]

Hi,

I went to the US for a month about a year and a half ago and at that stage my creatinine was low and function fairly ok so I just had all my drugs and a prescription and had no problems. I went with 3 other friends as we drove from washington DC where one of them was living over to san fransisco down to vegas throught texas, oklahoma etc on to New Orleans and then back to washington. It was an incredible experience and I'm glad I did it then as it would be virtually impossiible for me to do now!

It is such an incredible and beautiful country and I hadn't really comprehended quite how massive it really is until we had been driving for 3 days and hadn't even got half way across!! If you are able to one day the drive across kansas into colorado is amazing, 500 miles of nothing but wheat and you reach colorado and see the rockies which are awesome. We drove over them listening to bob marley at -12 c

I know you love it there as everyone we met was so friendly and genuinely wanted to talk to us, it was the best holiday I've ever had.

Mike

[Pam]

Hey JMan!
So glad you'll be visiting the US! I wish I could come to the UK...I went to Europe about 20 yrs ago but wasn't able to get to Merry Old England! I just LOVE the British people and your history and wish I could meet some of you guys!
Anyway, about traveling...YES! It is so important to carry your meds along in your "carry-on" luggage. I had a great little travel bag in which I had all my meds, passport, etc and carried it with me everywhere...by the way, make sure in addition to all of your letters from the docs that you get extra prescriptions too...just in case!
I found it a little hard to get all the water I needed in a day-everyone else was drinking alcohol! I did search out all the stores/ markets when we came into a city to purchase bottled water which I then kept in my room for whenever I became thirsty. I do not know if this is a problem for you guys or not...!
Take time to rest and don't overdo it...I hope that you have a great time here!
Pam