The Dialysis Part of Our Trip

As those of you know who have followed our blog throughout the trip, Linda did not write very much about her ten dialysis treatments in nine different centers. What she wrote in her last blog sums up her overriding attitude: "Dialysis is just a bump in the road compared to all I've seen and all I've experienced." 

I do want to write something here about our experience with dialysis on this year's trip. This is mainly for people with a personal interest in, or great curiosity about, dialysis, and I'll put more effort at distributing this post to those people. 

From my standpoint as chief logistics officer, this was a tougher trip to plan than last year's even though it was shorter by one week and two dialysis treatments. I learned last year that there's only so much you can plan in advance--basically just the cities--because centers (rightly) won't commit a chair to a traveler more than a week or two in advance. So I spent less time working on dialysis arrangements before we left, and I could've done more in that regard. 

Specifically, I could have made it clearer to DaVita, the excellent dialysis conglomerate which operates the majority of this country's centers, just how important it was to get the earliest possible "chair time" for Linda this past Friday and Saturday. We had picked Louisville and Cincinnati for those last two visits because there were at least a couple of dozen dialysis centers to choose from, increasing Linda's odds of getting an early time somewhere. Instead of canvassing all the centers and letting them know about Linda's request, they sent out one request at a time. As a result, it was four days before the Cincinnati treatment before they got the message that we didn't care if we had to drive 50 miles, we needed that early chair time. Wednesday morning, a center was found, three days before we would arrive.

Incidentally, there was good reason for Linda to have dialysis on consecutive days. Her normal days are Tuesday-Thursday-Saturday, but because most of the centers in Wyoming (where we spent nine days) operate only on Monday-Wednesday-Friday, we decided to put her on a Monday-Wednesday-Friday schedule for all three weeks of the trip. The drawback was that it would leave her with an extra "stretch day" from Friday the 13th until her treatment this morning, the 17th. One stretch day is enough for her to handle (predictably, it is the most likely day of the week for the little symptoms to manifest themselves, such as nausea and shortness of breath). That is why she has never missed a treatment in nearly six years on hemodialysis. So we arranged for the extra treatment on Saturday to put her back on her Cooperstown schedule. 

Linda had a little different experience in each of the ten centers on this trip, but the one constant was that her dialysis treatments went smoothly. There were a couple of times when cramps persuaded the nurses to curtail her treatment by 10-15 minutes, and one time when her blood pressure got too low just before they were going to release her. She remained an extra ten minutes or so until that stabilized. 

Not surprisingly, her "dry weight" was the toughest thing to get right. A quick explanation of dry weight if that's a new term: the essence of kidney failure is that the kidneys no longer process the fluids you take in, so you need to connect to a machine that does that processing. Between treatments, whatever the patient drinks stays in the body, adding weight that is carried around until the fluid is processed out during the next dialysis. The dry weight is what you should weigh after the treatment. The amount of weight added in between treatments can vary, and because that function of the machine has to be programmed in before treatment begins, it's something of a guessing game as to how close you'll be to your ideal dry weight. They don't know until they weigh you just before you head out the door.

If they don't get the dry weight down far enough, it means that it will take less fluid intake to give that bloated feeling which is relieved only during dialysis. If they lower it too far, it can whack out your blood pressure. Linda's treatments were solid in that regard, as her weight after a session was never more than .5kg away from her. That's a big reason why she felt so strong and comfortable during the trip, and why dialysis was only a bump in the road for her. When you get a "bad" treatment, you can real rotten until that next treatment, which is more of an ordeal. Linda felt good going into the treatments, and better coming out.

She did, however, have a little problem with altitude. The same thing happened a couple of times last year when we traveled to altitudes approaching 10,000 feet, but she was also coming off leg surgery and taking a post-surgery medication that also contributed a lot to her discomfort. Still, Linda's doctors cautioned her about doing too much at altitude, as dialysis and heart patients are at greater risk. She is both of those, all right, and since she has had two bypass surgeries on her left leg, that is what affects her the most at altitude. It happened first at the Upper Falls of the Yellowstone, which is somewhere over 8,000 feet, when she had trouble walking. Her leg was weak and wobbly, and after half a dozen steps she went back to the car while I took photos and roamed a bit. The same thing happened to her at Bryce Canyon last year. 

That was the only thing that gave her trouble. She owes a ton of credit to her doctors and nurses at Bassett Hospital in Cooperstown, and to all the nurses who took care of her on the road. (I don't think she was seen by any doctors, which was fine by us). Nurses are a special breed, and there are no dilettantes among dialysis nurses in particular. Wherever Linda went, she was treated as a guest, not a passerby.

I'd like to finish with some brief items concerning the various things Linda experienced in dialysis centers around the country, the things that made each treatment unique.

• Overall, the best dialysis experience was in Rosebud, SD. Last year, she had dialysis on the Navajo Reservation in Arizona and found it disheartening because of the overt poverty in that desolate place. This year we visited the Rosebud, a Sioux tribe. The center itself is painted a striking shade of turquoise:

• The first thing we saw when we walked into the Rosebud center was a big display on one wall with an explanation of the importance of family and children to their tribe. Each patient's photo was there, about three dozen of them, and for each we were told how many children and grandchildren they have, their favorite television show, and their favorite family meal. It's a great way of reinforcing what dialysis patients know, which is that they are all in this together, a community of people helping each other get through it. At another center, we saw another set of patients' photos; this was a "Transplant Hall of Fame" showing the smiling face of one of the unit's patients who had a successful transplant.
• The Rosebud unit was relatively small (Louisville and Cheyenne had more than twice as many chairs, for instance), which made for a more intimate relationship with the nurses. Two of them, a woman named Rita who has won a national award for nursing skill, and her son, Justin, were particularly friendly. Meanwhile, I had a good conversation with George, one of the transporters who drives patients to and from their treatments. Many of them come from a good distance away, since dialysis centers are scarce in South Dakota and Wyoming. 
• The other great thing about Rosebud was the memorial quilts. When a patient passes on, a quilt is made to honor him/her. Linda happened to have her treatment in the chair next to the old woman who has created the majority of those quilts. They hang from the skylight and the walls and are quite beautiful, as these photos show:

• The treatment that went least smoothly was in Cheyenne. They're in a large, new center, and Linda was in the first shift. But there was a problem with the machines--all of them--and the staff was scrambling around to overcome it. One of the chemicals that is circulated through the machine along with the patients' blood was misbehaving, and it was taking a lot of time to fix. In fact, even after Linda and I arrived at last year's location of that center, found a note giving the new address, and were a half-hour late, she still got there before they were ready to hook her up to the machine. When she did get the treatment, staff members were still distracted even after the mechanical problem was solved. Because of the early delays and emergency precautions, both patients and staff might have to be there very late, which is no good for any of them. So she reported feeling a little like a head of cattle being tended to briefly and impersonally. It was not necessarily a coincidence that this was one of only two centers where I wasn't allowed to visit Linda during the treatment. 
• Of course it was the crisis mode that caused it; her treatment there last year was perfectly fine. But she was in such a hurry to get out of there that she left her earphones behind. When we arrived home a week after the treatment, the earphones were in the mail. So we'll be sending a thank you note to the folks in Cheyenne.
• One of her treatments (I won't say where) began late in the afternoon. She doesn't like that; she prefers it first thing in the morning so she doesn't have to sit around all day thinking about going. But this time it couldn't be helped. During her final half-hour, she was one of only two patients, but four nurses were still there. During the hour I spent there reading to Linda, the reading was frequently drowned out by the hysterical laughter coming from the nurses' station. It sounded like a drunken sorority party. All four nurses were young, with nobody to rein them in. 
• At Louisville, she was the only white patient that morning. Nearly all of the other patients were men (a general tendency we think we detected was more men on the early shift and more women on the second shift), and nearly all of them spent the whole time giving the nurses a hard time. Whether it was the urban spiel or complaining about the needles or generally haranguing everyone around them, there was constant talk, and Linda found it very entertaining. She did run into a couple of patients like that on last year's trip (I remember hearing one yell "Hey!" to get the doctor's attention as he consulted with another patient), but not a whole room full of them.
• Linda felt that the best cleansing she got was at the center in Manhattan, KS. She couldn't be specific and it's hard to define. Some days you feel better after dialysis than on other days. That was the day she felt the best after her treatment. 
• She had two treatments in only one place, Cody, WY. I had put most of my pre-trip logistical efforts into getting her a chair at Cody, where the center was in the middle of moving and wasn't accepting "travelers". Thank you to Ruth for letting me persuade her commit to giving Linda a chair time no matter what. In fact, they had an open house at the new unit two days before our arrival, resulting in much confusion before her first treatment as nobody realized that she still needed to go to the old unit for her dialysis. We were a half-hour late for that appointment, but received golden treatment from the whole staff. If she hadn't gotten dialysis there, we would have had to go to Bozeman, MT, once or twice, meaning that much less time in the Grand Tetons and Yellowstone, the highlight of our trip. 

I think that's all. The dialysis truly was just a bump in the road for us. Nothing stood in the way of the fun we had on every day of this trip. That's why we looked so happy on the final day.

And that's why we hope our trips will inspire people with dialysis to get out and explore the world. Of course it doesn't have to be super-ambitious trip like the two we've taken. It isn't difficult at all to arrange a week's worth of dialysis treatment and to have them go off without anxiety or misadventure. Live! That is Linda's message, at home and on the road. But especially on the road. Get out there and get the most out of life, the way we do.