On the futon:
* cassettes (tubing) for nine days--always figure for some faulty set-ups
* blood pressure cuff--I take my BP at least twice a day to determine what kind of dialysis solution I should use.
* scissors for cutting holes in the frame delivery pads (see below) in order to customize them for my insulin pump infusion set
* Lysol for cleaning the room in which I will do dialysis. I Lysol everything down when I'm setting up each night and when I'm changing the bandaging every morning. Sure, they've got Lysol in NYC, but I wouldn't know where to get it when I step off the plane.
* patient extension lines--These are vital, as I don't know how far the toilet is from the dialysis machine.
* extra batteries for the insulin pump
* prescriptions for meds in case they are lost or don't arrive
* PD belt for holding the transfer set in place while doing dialysis; can also be worn during the day to secure the transfer set under my clothes
* all my meds, each breakfast and dinner compilation put into separate snack bags and then all the breakfast bags and all the dinner bags put into their respective sandwich bags
* ponytail ties for securing the baby socks on my transfer set when I don't want to wear the PD belt during the day
* salve to diminish the scars from my heart surgery
* blood monitor with lancets, lancet pen for delivering the stick, alcohol swabs, and test strips for determining my blood sugar level
* extra test strips
* hydrocortizone cream to attempt to combat the redness around my dialysis exit site
* antibacterial cream for daily use about the exit site
* surgical masks
* letter from my doctor explaining to airline personnel why I need to take my dialysis machine onboard
* paper toweling, which I use after I wash my hands, as bath towels tend to collect germs
* antibacterial soap
* transfer set pads--The needle for the insulin pump easily comes out of my skin when putting on and off clothes and such. These sticky pads help keep the needle secure, but I have to cut a hole in them to allow for the tube to slip out while taking a shower.
* insulin syringes in case my insulin pump fails and I have to switch over to shots
* mini-caps for putting over the transfer set during the day when I'm not doing dialysis
* medical tape
* baby socks for covering both my transfer set and my insulin pump (a new one every day)
* approx. 30 pages of my recent medical history in case I need medical attention while in NYC
* blank patient records for writing down my BP, blood sugar, amount of insulin taken, readings from the dialysis machine regarding my treatment, my weight
* sterile gauze
* sharps container for collecting used syringes, needles, and lancets, as it is against the law to put them in the trash
* gynecological wipes--During the dialysis set-up, I wash my hands three times with antibacterial soap, then use a gynecological wipe to get any residual dirt or germs off my hands
* infusion sets--These are the mechanisms that deliver the needle into my body for delivery of insulin from the insulin pump. They need to be changed at minimum every three days; however, because the infusion-site needle so frequently comes out, I have to bring plenty of extra infusion sets.
* syringe, which becomes the insulin cartridge; the catridge is full of insulin, enough to last approx. three days
* alcohol swabs
* clamp for opening dialysis-solution boxes and bags
* insulin plus an extra bottle
* CDX II, which assists in hooking up the dialysis bags to the tubing
There goes one full suitcase of stuff!
Then I have to carry on the 28-pound cycler, pictured here with the three bags of solution I use every night. To protect the cycler and also to muffle its gurgling and farting all night long, I wrap it in two small quilts. Thank goodness, Baxter, the dialysis supply company, delivers the boxes of solution. But still, I'll have to lug those boxes from the hotel where HBO is putting me up to the hotel where I'll be staying afterwards. Quite the workout!
My biggest concern is getting the machine onboard. Air Canada had me in tears this summer. The personnel refused to let me carry the machine onboard. American Airlines was just the opposite, very accommodating, very kind.
And so, folks, yes, it is possible to travel on PD (peritoneal dialysis), but it's a chore. Just don't ask me to bring you anything back from New York! It won't fit!
Ooops, I forgot the bleached hand towels that I also need to bring. I put a new one on my lap each night and each morning during set-up and capping-off so that the transfer set does not come in contact with my bed clothes, which, like everything else, are carrying germs. This is why I lay everything out, so that I don't forget something. So add seven hand towels to that pile.
4 comments:
Well, damn, and to think that I feel burdened by my own gear (which I also just took a photograph of and posted it to my blog). I do think about dialysis though because I know just enough about it to imagine what a drag it must be. And not just the dialysis itself, but the being tied down by medical needs and equipment. You see, I'm that way already since I can no longer camp or venture far from electricity (which leaves much of the Third World out), or from a facility that can repair CPAP machines. Most motels are even out because I can't sleep in a bed.
Anyway, my hat's off to you. You've got guts, and you're still able to maintain your humor.
Hello, Snowbrush,
Yes, I was once a Third World traveler, backpacker, and solo camper. No more. Thanks for your comments.
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