Category Archives: Uncategorized

The Rest of the Trip

The Rest of the Trip I realize I kind of left things hanging. It was a rough journey to get from Reno to Bodega Bay, our “final” destination. Up to that point everything had been on the interstate and fairly … Continue reading

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Reno, Nevada

Driving through apocalyptic levels of smoke from the Yosemite fire made my eyes and throat burn.  Visually, driving along that part of the Nevada interstate is just as bad. Miles and miles of salt flats and nothing. When we stopped … Continue reading

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Wells, Nevada

Chuck tried to change out the converter in the CampingWorld parking lot. Turns out he needed a certain size hex wrench. Of course he had a bizillion hex wrenches  in his tool box except that one. I figured the folks … Continue reading

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Provo, Utah

The trip from Moab to Provo was pretty uneventful. We stayed in a very nice, though very white bread RV park with lots of very big trees and even some grass. Living out in the middle of nowhere as we … Continue reading

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The Outlaws and Outcasts RV Park

The only real Blue Highway drive we planned on this trip was the “back way” from Montrose to Moab through Naturita, Colorado. There were some pretty steep grades and hard pulls with the truck only doing 20 mph. I don’t … Continue reading

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Day 2 and 3

Day 2— 8-22-13 While Chuck hung out with his kids I had an amazing day for me just relaxing in my LaFuma zero gravity chair, reading, listening to the river and taking a very long walk with my dog, Jupiter, … Continue reading

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First Day on the Road

The drive to Montrose was going to be one of the longer days. Because of Chuck’s RLS and the fact that my ankle couldn’t take many hours of driving most of the trip was divided up into four or at … Continue reading

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Planning a BIG Trip

We decided  to go on a big trip.  As in two weeks in the Airstream.  It’s really a pretty big deal and we’ll see how things actually work out. This all started with the marriage of Chuck’s daughter, Teri, on … Continue reading

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Set-back—A Stroke. Advances—More Camping

It’s been quite awhile since I updated and a lot has happened. Challenging things and good things. Over the last few months I noticed that Chuck just didn’t seem as steady on his feet and was having balance problems. However, … Continue reading

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Cast Off

On March 7 (also the first anniversary of Chuck’s dialsysis) I got my cast off. Because my ankle didn’t hurt at all in the cast—even when I very gingerly touched my foot to the floor to sometimes balance myself—I figured … Continue reading

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One Year Ago Today…

It’s been one year since Chuck’s surgery to implant his PD catheter.  In some ways it seems like yesterday and in some ways, it’s been years. What stands out most vividly is the uncertainty. First, waiting for hours and hours … Continue reading

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Two Weeks Post-op for me

Thanks to the brilliant person who invented the knee walker/scooter. I don’t know what I would do without it. Crutches are an abomination. This scooter, with it’s little basket allows me to get around and actually carry things. It took … Continue reading

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Peritonitis….again

On New Year’s eve 2012 Chuck decided to go with me to the bead and rock store where I planned to get some stuff to finish a craft project.  He really enjoys looking at all the cool rocks and minerals … Continue reading

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The Miracle that Happens Every Night

Reviewing these posts, I sure have done a lot of complaining, particularly about the VA. I haven’t written much about the good.  Yeah, ESRD and PD are very difficult. But, thinking back to where we were this time last year, … Continue reading

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Hey VA! How About Hiring a Vet to Answer the Phone at the Satellite Clinic?

The VA opened a new satellite clinic in Rio Rancho.  I don’t know who picked the location, but really, considering the size of Sandoval county and the number of vets from the surrounding Indian pueblos it would have been much … Continue reading

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Medical Bullying: I’m Banned from PD Clinic for Complaining about Mistakes

There’s a new and growing awareness about bullying. You see articles about it in the paper and TV, usually related to kids but there are sometimes instances of adults being called out as bullies.  But what about medical personnel bullying … Continue reading

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Peritonitis Update

Chuck has recovered from his peritonitis. As he said, “I dodged the bullet on that one.”  The incident did have the beneficial effect of seeming to at least crack open the door of “acceptance” for Chuck.  When we met with … Continue reading

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Peritonitis…yet another set back

Chuck is–most thankfully–recovering from peritonitis.  It’s the terrible thing that our PD nurse warned us about, the thing that we have tried to be so careful about. Yet, despite all our caution with our careful “procedures” it still happened.  Now … Continue reading

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Discovering Your Limitations and the NEED to Respect Them

I honestly think the ‘battlefield’ is in the mind.  Mine doesn’t want to accept limitations that have bound me since recent physical events.  My mind still thinks that I can behave as I did 10 years ago.  But things have … Continue reading

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Interesting Discovery…

I made an interesting observation about my psyche today.  I think I am still in denial about this whole dialysis thing.  It’s hard to deny that I have a tube surgically inserted in my abdomen for PD.  I wake in … Continue reading

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Insomnia and RLS Continue

As I’ve written before, sleeping with Chuck is like sleeping with a rototiller. Even though it’s called Restless Leg Syndrome with him it Restless Whole Body Syndrome.  I feel so bad for him lying there twitching and jerking, then getting … Continue reading

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Adrift Without Follow-up

We heard through the on-call PD nurse that “our” nurse, Joyce was going to be gone for week.  However, since Chuck had a renal appointment for today, 3/22, we figured we could ask questions, get an assessment of Chuck’s labs … Continue reading

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The Jellyfish in the Drain Bag

With the exception of boogers and cigars there are few things that gross me out or make me squeamish. Good thing because PD means dealing with body fluids. Although our PD nurse and the renal docs thought it weird I … Continue reading

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Approaching the New Normal (after the first dialysis machine has to go to the FDA

Three days ago we went through training on the cycler with another couple and their adult son. More accurately it was the wife of the other man and me.  Chuck and the other vet slept through most of it. The … Continue reading

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On PD…Got my MACHINE!!!

It’s 1 am and II am on my new Baxter dialysis machine.  What a big difference from the manual method and the machine.  It runs all night while you sleep.  If only I could sleep!!!  I am sure that I … Continue reading

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Our First Delivery of Supplies

The full gravity of this new life landed like a ton of bricks…..or rather a ton of boxes—literally. We were told our first delivery of supplies would happen sometime between 2:00 p.m. and 6:00 p.m. Since we were down to … Continue reading

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He’s Home! (Again)

Finally!  It’s been a very stressful few days. The doctors had been saying that Chuck could be in the hospital as long as a couple of weeks, then it was one week more. Then, on Monday (3/5) Chuck called me … Continue reading

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Dialysis! At Last!

Joyce tested Chuck’s catheter with a small volume fill intended to clean out the crud from surgery and make sure that there was no leakage. Chuck had some “pain on drain” but it didn’t seem too terrible. Since it was … Continue reading

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Bombshell #2: Re-hospitalization

As we’re driving into Albuquerque for PD class Number 2 Chuck comments on how boring it is, how it’s insulting to our intelligence.  I tell him that it’s like the cardiac patient information I used to write for a hospital.  … Continue reading

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Bombshell in PD Lesson #1

Chuck got the tiniest taste of normalcy when he was released from the hospital on Friday. He was like a different person. Good energy, good mood.  Everything was looking up. We looked forward to a “normal” weekend and the beginning … Continue reading

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The Rash: A Study of Disagreement

At no time was the dysfunction of the VA and the miscommunication between medical professionals more apparent than when Chuck developed a horrific rash—not just a rash, a huge bright red rash with hives that was hot to the touch. … Continue reading

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Transfusion + Epo + Iron = New Man

Chuck received a transfusions, actually two units of red blood cells overnight. That plus the iron infusion the day before and an Epo injection about six hours before the transfusion completely transformed him. He had actually been getting better after … Continue reading

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A Typical Hospital Day

Where does the day go and what did I do?  I ponder this as I was driving home in rush hour traffic from the VA in a state of total exhaustion.  Nothing really. And yet so much. Doctors come and … Continue reading

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Blood, Lots of Blood

I absolutely cannot watch violent TV shows or movies. I like mysteries, but have to look away during the crime scene shots on shows like The Closer and Bones. Oddly,  in real life  I’m not at all squeamish around blood … Continue reading

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Surgery Day -Chuck

So, I checked into the hospital on Valentine’s Day.  The VA was so unprepared for me; as a matter of fact they weren’t even sure they could find a bed for me.  We waited in the Dialysis Ward for them … Continue reading

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Surgery Day – Susan

The past four days have been some of the most difficult and challenging of my life…and it’s not like I’ve exactly had a walk-in-the-park kind of life.  Obviously a surgical procedure that will fundamentally alter our lives forever—and, like all … Continue reading

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Bless the Nurses

Another long day at the VA.  Since I have to get up really early tomorrow in order to be at the hospital by 6:30 to see Chuck off for surgery, this will be short.  I’ve been highly critical of the … Continue reading

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Checking into the Hospital

We reported to the renal dialysis waiting area at 9:00 a.m. sharp just as instructed. Typical VA there was some sort of mix-up and we’d end up sitting in that waiting area for the next three hours. Chuck slept the … Continue reading

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D Day

I don’t know what the hell the ‘D’ stands for.  Paced the floor all night long.  I know the surgery is scheduled for the 16th but today’s Valentine’s Day and they will start tests and poking and probing.  This may … Continue reading

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The Day before THE DAY

The anxiety about the hospital admission builds and having to spend  a long day at the VA didn’t help. First was an endocrinology appointment. The intern du jour came in with a comment to the effect of “interrupting your nap…”  … Continue reading

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The Dialysis Educator Tells Us a Little More

First, I’d want to bring up a point of basic etiquette—would that be the right word?—consideration maybe?  Anyway,  people who work in the health care field should take a basic lesson from the dog trainer who taught the therapy dog … Continue reading

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The Pain is Starting

Up until yesterday Chuck hasn’t had any kidney pain. That changed abruptly. I was awakened about 1 a.m. as he cried out in pain. “What’s wrong? What’s wrong?” “I started to roll over and it really hurt.” Considering how stoic … Continue reading

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Home

Our Journey Through ESRD When my partner in life and Love, Chuck, was diagnosed with end stage renal disease (ESRD) we were devastated. We met with a peritoneal dialysis educator at the local Veteran Affairs hospital who described the process. She gave … Continue reading

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