I’m into week 2 of my first vacation since starting dialysis, and I am happy to report that I am totally relaxed, at peace, and enjoying life. I’ve settled in to the routine of treatments, making up for the few I missed while driving cross country. I even did labs without incident, and they were stellar! So vacation surely agrees with me!
Nxstage has been wonderful. I had to recalculate my supplies because several bags leaked, and I only got one case of cartridges (6 would not last for 13 treatments!), but the additional supplies arrived almost immediately. The delivery service for the originally scheduled supplies was superb, bringing all the boxes in and stacking them neatly. Even Fresenius, who couldn’t quite cope with the concept of sending certain meds to a vacation address, got their act together and the meds arrived, in duplicate, only a few days late.
Treatments have been a bit of a challenge, but only because I am adjusting for much, much higher altitudes than my body is used to. It takes time for the blood to thin, so my pressures were crazy, more than 200 venous, at the 300 BFR that I normally run at. But a quick call to my Access Center, NxStage, and some online research left me reassured. I also discovered how positional my fistula arm really is. Turning my body slightly, raising the treatment arm to rest on the armchair, all contributed to raising the pressures. Another side effect of the altitude was significantly higher blood pressure, which has slowly started coming down the longer I am here.
Being a solo traveler has its challenges, and being on dialysis adds a few more, so I won’t lie and say that I had some fear and trepidation about undertaking a four week cross country trek. True to form, I mentally planned every aspect of packing, both clothing and treatment supplies. (I also downloaded several helpful checklists from Home Dialyzors United) It paid off. There was nothing missing from my normal treatment routine, except the S hooks for the hanging bags, and they were easily replaced at a nearby Lowes for 30 cents each! These hooks make the hanging bags almost bearable, and I urge everyone to buy a supply, and a vial of heparin (which was easily replaced with a shipment from Fresenius).
Now, as an aside, I must comment on how much I dislike the hanging bag system. I surely appreciate that it allows me the freedom to travel, but, in my opinion, hanging bags are archaic. I can’t help but resent the fact that in over 10 years, while medical devices for diabetes, prosthetics, and so many other afflictions have progressed, those of us on dialysis are still using such an outdated treatment modality!
The necessity of transporting over 40 boxes of dialysate, in 5 pound bags (6 per treatment) that weigh over 10 pounds each is daunting. Each bag has a perforated hole in the corner, which you have to maneuver over the curled IV pole hooks. Try that holding a 10 pound bag, especially when your fistula arm is restricted to lifting no more than 5 pounds. Then, to connect all the bags, you need an octopus of tubing (8 to be exact), that need to be screwed into each hanging bag. Be sure to clamp the unused tubes, as I found the caps fell off and solution sprayed everywhere. In fact, this happened frequently, no matter how many times I checked the connections.
And in order to activate these hanging bags, you have to “break” a “frangible”, a piece of hard plastic that blocks the fluid from leaving the hanging bag until you are ready for treatment. To me, this is the worst possible design – it is tough to break the tubing correctly, allowing free flow of the dialysate. Push too hard, and the plastic cuts through, causing the bag to leak. Don’t break it enough, and the fluid doesn’t flow through correctly, signaling alarms, and much fidgeting to correct.
Seriously, there has to be someone out there who cares enough to develop a user friendly system for dialyzors to travel. In my mind, this is not it.
That being said, I have thoroughly enjoyed being on my own, visiting with friends and family, exploring the local towns of Carbondale, Basalt, Redstone, Snowmass, Aspen, and of course Glenwood. Soaking in the hot springs is one of my particular favorites, and I’ve managed to squeeze in a few delightful soaks. And keeping up with my treatments!
One key spot I got to explore, not in any of the tourism brochures, was the local landfills! Dialysis produces an inordinate amount of waste, and sadly, my house did not have trash collection. Normally, a person wouldn’t produce much trash during a three week stay, but add in dialysis, and it more than triples! Each week I hauled 15 or so cardboard boxes, and three hefty contractor bags filled with medical waste off to the landfill.
Now, I was lucky to score a Prius for my vacation, which has been phenomenal on gas. Almost 2000 miles on $115 in gas. What it doesn’t do is go through 6 inches of mud at the Glenwood landfill. I managed to creep along to within 20 feet of the drop off, and the mud was over a foot deep. There was no way the car or me were hauling the trash through that! So carefully inching backwards, I managed to barely turn around, and get the hell out of dodge!
The next day, I decided to try the Pitkin County/Aspen landfill. What a difference, a concrete covered lot with dumpsters marked for trash and recycling, and a mere $12 and 10 minutes later, I was done! It was positively civilized! I was almost expecting white gloved waiters to appear to help!
Soon I’ll be heading home, back to reality, but you can bet that I am already planning my next vacation! Stay tuned…..