Author Archives: Susan

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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A Life-Changing Accident…for me

On 1/23/13 I had a life-changing accident.  In less than a heart-beat I went from being a very healthy, active woman, to a woman facing a long, painful and incapacitating recovery.  For Chuck and I this is a monumental challenge. … 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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Devastating News Followed by Much Better News: VA vs. Private Sector

On Dec. 7 Chuck got an absolutely devastating diagnosis from a VA ophthalmologist: Diabetic Macular Edema. He told Chuck he could go blind at any moment and, that to preserve his sight, he would require painful injections into his eyeballs … 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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The Insanity of Refusing Bleeding Prevention: It’s the VA way

For the second time in a little over 2 weeks, Chuck has had major bleeding into his drain bag as a result of elevated INR (International Normalized Ratio) levels. He takes coumadin because of his artificial heart valve and it … 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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Camping Trip

Another camping trip in the Airstream. Proving—again— that it is indeed possible to go camping on PD.  Yes, it is more work. You have to make absolutely, positively, without-a-doubt certain you don’t for get something. Plus, there is the work … 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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And Yeah, What About that Foot? — Another Set-back

It’s been about a month since the last time I blogged and it ended with Chuck asking Endo Doc, “what about my foot?”  They blew it off, I guess figuring it was “just” diabetic neuropathy.  I mean, you’re diabetic, your … Continue reading

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“An Acceptable Complication”

The two year anniversary of Chuck’s botched biopsy procedure that accelerated his renal failure is coming up on August 10.  We have been trying to find a lawyer to represent him in a malpractice case against the VA. Because it’s … Continue reading

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Camping! Again.

We went on another camping trip 6/27 and 6/28. This time venturing further–four hours away–to Eagle Nest Lake in northern New Mexico. It wasn’t the best experience but not because of the dialysis. Because we’re still trying to stick with … Continue reading

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Normal…at Last

Posts have gotten pretty infrequent because, well, things are “normal”.  As normal as things can be with ESRD.  Our wonderful PD nurse had told us when Chuck first started dialysis that it would take two months before he would really … Continue reading

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Lugging a 33 Pound Drain Bag and Other Aspects of Daily Life

As I wrote when we first started this blog—and indeed the reason we started this blog—was because we wanted to know what life would be like. What happens every day? The Baxter unicorns and glitter story sure didn’t seem like … Continue reading

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PTSD and Sleep

It certainly has been a wild ride the last week or so.  Chuck posted a few days ago about the sleep and PTSD issue. It was actually a very serious event. Somehow, in his half sleep/half hallucination state he got … Continue reading

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Bumbling Toward Normal….whatever that is

Sleep still continues to be the big issue even though the 12 foot extension to Chuck’s 10 foot “tether” means he has more room to pace, and, most importantly that he can get to the toilet. Something troubling that has … Continue reading

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Moving Up to Extraneal

Chuck’s  response to standard PD therapy hasn’t been what the PD nurse (Joyce) and PD renal doctor think is acceptable. He still had lots of edema in his legs and his total UF (the amount of bad stuff pulled 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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Getting WORSE on CAPD

[Because the VA wouldn’t order a cycler until Chuck was discharged from the hospital] Since Chuck got home from the hospital (again) on March 5 we have been struggling with CAPD.  It’s almost like a full time job and it’s … 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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When, Oh When, Can We Get On With This?

Today was a rare beautiful day for March. That’s because the four seasons in New Mexico are summer, fall, winter and wind.  To have a warm March day with no wind is such a gift.  I wanted so much to … Continue reading

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Contradictions and Bungling

Chuck’s dialysis continues to go reasonably well, but, because he’s slightly more than two weeks post-surgery they are only doing one five liter fill on him. There was some kind of a glitch on the second night where the machine … Continue reading

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Patient Dignity and Privacy—Please!

Imagine you’re sitting in front of the TV eating your supper, engrossed in a story on the evening news. Suddenly, a group of strangers barge in and gather around you. One of them turns off the TV, another begins asking … 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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What Can We Believe?

Chuck called this morning before I left for the hospital to say that they told him he was getting out today and asked me to bring some clothes. We were both thrilled —although I had some reservations about the Foley … 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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Venting to the Interns

The surgical team came in for “grand rounds” this morning (or whatever they call it when the Attendings come in followed by four or five interns) .  A few of the students—maybe some are not even MDs yet—seem genuinely embarrassed … 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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