Archives for 2019

After months of traveling 45 minutes each way back and forth to Stuart for dialysis three days a week, we’re very happy to be having our very last day of in-center dialysis this season. We’ve finally managed to secure a path to getting back to doing dialysis “at home.” It’s been a long road, because our initial “home” clinic in Tennessee wouldn’t let us proceed with home dialysis unless we came back for a monthly clinic, a 90-minute appointment that required us to travel 3 days (missing 3 days of dialysis as well), and spend over 500 un-reimbursable dollars just to be there. Since that was untenable for us, we opted to to “in-center” while we were here in Florida, but, as you know by now, that took up a lot of time, effort and fuel to do. Finally, we managed to persuade the powers-that-be to let us come under the auspices of the Port St. Lucie Home Health division until we get back to Tennessee under a different “home” clinic. It all had to do with the fact that Vanderbilt isn’t a full-blown Fresenius clinic, which is the chain of clinic with whom we belong, and as such, won’t let us keep their equipment while we travel around. By sticking with true Fresenius clinics, it seems we’ll be able to keep the same machine as we travel, and the real logistical problem is simply getting supplies and new “home” clinics whenever we move to a new location. We figure if we pick one central location in the area we want to travel to, we can circle around it for at least 2-3 months each, which should make it easier. Changing doctors is another matter, simply because one doctor can’t practice medicine in another state, even through a Skype or Telehealth conferencing system! Crazy but true! Anyway, with the help of the folks in Port St. Lucie, it seems like we may be pioneering a path for us to get on with our lives, living it the way we want, on the road! So as much as the people at the dialysis center have made us feel like family, we’re on to the next step!

After a successful two days of Workshop in Ontario, California, Hubby and I grabbed an early morning flight, with stopover in Dallas again, and arrived in Palm Beach on time at about 6:30, where brother Jeff picked us up once again. Nice to get back before dark for a change!

Had a midday dialysis chair, so we rested for the earlier part of the day before heading over there. Unfortunately, for some strange reason, this clinic doesn’t use buttonholes, which is the permanent track we’ve used for Hubby’s dialysis for some time. The idea is to create a tunnel that a blunt needle can penetrate easily, and keep using the same hole over and over again for simplicity’s sake. Evidently, this clinic determined they are prone to infection (though I’ve heard from other clinics the opposite is true), and decided to use sharp needles on another part of his fistula. That created all kinds of problems. It took them 45 minutes to get a good stick, which made the whole exercise drag on for ages, and it was so close to the buttonhole that it worried me. They’re supposed to stay at least a half inch away from it, but this one was much closer in the end. They had four different people try it, and by then, the cartridge and the machine had clogged up and they had to start all over again. Very frustrating. I had offered to bring my dull needles with me and do it for them, but was told they wouldn’t let me, though when I was there and they were having so much trouble, I was told I probably should have. Grrr! Eventually it got done, but it made for a late evening again!

Another private workshop to do out in California, though this time the best flights left from Ft. Lauderdale and returned to Palm Beach (go figure, must have been some kind of event as there was nothing available for a Saturday return), so we had brother Jeff drop us off in Ft. Lauderdale. We had barely enough time to make our connection, but managed to pull it off with a few minutes to spare. Another long, cross country trip. Jet lag is starting to feel permanent! The good news, though, is that I was able to finish the movie I started on the last trip home! Yeah!

Hubby woke me up having some kind of episode at 5:00 this morning. Not sure what happened, but he was flopping around like a fish out of water, and was non-responsive for nearly a minute to my questions, before he finally started to come out of it. It was almost like he couldn’t wake up from a very violent dream. I thought he was having a seizure, or worse, a stroke, and was ready to call 911 for an ambulance, but he came around and insisted he was fine. I kept talking to him, and he seemed lucent, so I turned the light out, held his hand and tried to get back to sleep. He was asleep in no time (as usual), but I tossed and turned with worry for awhile before nodding off, only to sleep until nearly 9:30!

Got a call for an early dialysis chair for Hubby, so we headed out early. Got a chance to do a lot of necessary running around, all productive, and headed out after dialysis to grab a quick happy hour meal at the Sneaky Tiki, which turned out to be a disaster. In addition to poor food (though the service wasn’t bad), I discovered that Hubby’s back surgery, which we had been busting our hump to get scheduled for the last two days by going to three different clinics and even rousting our heart failure specialist out on his day off to write a clearance letter, only to have the doctor’s office drop the ball. Apparently the girl responsible for getting insurance approval took the day off, and no one else followed up on it. I waited all day for a call, and when I didn’t get one and called them, they put me on hold for 15 minutes, then told me the office was closed and they couldn’t do anything. Grrrr! Needless to say that put a damper on what had otherwise been a pretty nice day.

One of the things we’ve been working on over the last few weeks has been to get two major health issues resolved. One is to get Hubby’s back fixed up. He’s gone through two rounds of shots in his back, which helped, but only for a few days, but they were mandatory before he undergoes a procedure that will give him longer lasting relief, which we’re hoping to get done before we leave. We spent much of the day on the phone and running around trying to get everything in order for him to get the surgery on Monday, which is the only day of the month his doctor can do it. Apparently he only does surgeries once a month! Go figure. The other issue was a wound on his face that has been weeping for a very long time now, and we finally had it analyzed and discovered it was a form of skin cancer, so today we had it removed. That required them lazering out a big hole on the side of his face, then going to a second doctor, a plastic surgeon, who neatly sewed it all back up again a few hours later. That all ended well, thank goodness, and though he has some Frankenstein-like stitches for the next 10 days, it should take care of the cancer issue. The miracle of modern medicine!