Taking off and tanking

JD writing: Review: Kate is thin...BMI is about 19...if it's below 18.5 she's in danger of being taken off the transplant list... Kate has normally low blood pressure, 90/60. Kate--unlike most every other patient at her dialysis center--has kidneys which produce almost normal amounts of urine.

This last week, on both Mon and Wed, more that 2L of fluid was "taken off" her circulatory system by the Fresenius dialysis machine: with a screen image of the machine shown below

In the image above the lower left "2650" represents that the machine has drawn off 2.65 liters at this point, with 56 minutes left in the treatment. This "patient" has BP of 100/70...

At any rate, in Kate's case, with about 20 minutes left in her sessions, she began to have her vision close in and her her hearing diminish, without losing consciousness, before the tech switched to adding saline to the line going into her fistula on her left arm. Her BP dropped to about 70/40. A stressful time for her.

You can appreciate that for a typical patient on dialysis the goal is to remove as much urea-laced fluid as possible. But the typical patient likely has high blood pressure (the leading cause of end-stage renal failure) and has not passed any urine since the last treatment.

In Kate's case, with low BP, and passing urine (albeit w/o much urea with it), it could be prudent to stop the fluid removal at some level less that 2L. So think I, her husband.

On both days Kate regrouped and drove us both back to home, stick shift and all, in the M6.

website link for Husband JD's comments on Kate's health and history

Feb 25, 2016

Here is where to read my extended comments in html on Kate's health and my additional comments on our lives together:

http://www.baseballboomr.com/KidneyText/JDofKT_words15B.htm

yes, like her bio, it is hosted on my baseball stats website...

Bottom line: Kate is in good health save for her kidney failure that keeps her on 3-times-a-week dialysis. She has a (limited) life between dialysis treatments.

This afternoon she was out in the conservatory with Louis, another Rhode Island Rose Society member, re-planting lettuce (of all things) that she's grown from seeds under grow-lights in a shelf system in the conservatory.

website for Kate autobiography

Feb 25 (post by JD)

We have a website for the html version of Kate's autobiography (about 20 pages)

http://www.baseballboomr.com/KidneyText/AutoBioE.htm

Yes, the html version is kept on my baseball stats website, but that turns out to be the most convenient location for me and my understand of blogs, websites, and facebook...and Dreamweaver 4...

In her bio you become more acquainted with someone you might consider donating a kidney to.

For those of you with a "power point" point of view, I have the same text with a dozen images sprinkled in, at

http://www.baseballboomr.com/KidneyText/AutoBio_img.htm

Zeppoles in the Center

Feb 17, JD writing:

Zeppoles from LaSalle Bakery in Providence RI.

At the dialysis center at noon when I was about to drive off on some errands (IGA, Lab, Salvation Army donation delivery...) Kate’s friend Bev in the next chair over reminded us that zeppoles are now available in Rhode Island bakeries. Zeppoles are pasteries, like cream puffs, that help celebrate the Feast of St Joseph’s Day (the Joseph of Joseph and Mary...). I’m a big fan of zeppoles. I added going to Wayland Bakery to my errand list.

Saint Joseph with the Infant Jesus by Guido Reni, c 1635

When I got to Wayland Bakery and inquired, I was told that zeppoles wouldn’t be available until Friday. Ugh. But the IGA (now called East Side Market Place) does have a bakery counter, I remembered... At the IGA bakery display case I asked the girl at the counter if they had zeppoles. She said no they don’t carry those things... I looked down in front of me and saw something that looked a lot like a batch of zeppoles. I said, pointing, what are those? She said “I don’t know... they just came in today.” I said, “they look a lot like zeppoles.” She looked alarmed and turned around and asked the lady working behind her, “what are these things?” The lady thought for a second then said, “I don’t know. I’ll look on the delivery sheet...” As she studied the sheet she looked at me and said, “What did you call them?” and i said “zeppoles.” and she said yes that’s right, they’re what you said, zepoes.

“I’ll take four,” I said. The girl looked at me straight in the eye and said, “They’re two dollars and seventy five cents each...” That’s OK I said and took my successful purchase to the car and drove to the center.

Kate was about to get taken off the needles as I stood there and told her the zeppole tale. She said go to the car and bring one in for Bev! But Bev declined, as did Kate, and one of the techs, K, who said she was on a diet. But Rick, sitting across from Kate volunteered that he would love a zeppole. So Rick became the prize winner, and polished it off post-haste.

I said to Kate “They let you eat food like that in the Center?” and she said you can eat, but most patients don’t and they usually don’t let messy stuff like zeppoles in, but in this case they might get cursed if they disrespected St. Joseph and banned zeppoles.

Bottom line, yes you can eat a zeppole while being dialyzed.

The Cat Near the Vent

Feb 13, Saturday, JD writing:

It was about -10 deg F at 6a.m. in our backyard in Rumford RI. For heat and summer AC we have central air. When it was being installed back in 2003 neighbors told us we shouldn’t take out the radiators or the house would get too dry in the winter... Kate didn’t like the noise radiators made, and the fact it took them half an hour to get the heat going. We never noticed any annoying dryness...besides I grew up in the low-humidity world of Colorado, and wouldn’t have cared anyway.

On the ground floor the heat comes up from vents in the floor, or in the case of the kitchen, from vents under the cupboards under the countertops. I can testify that the air coming out the kitchen vents is 125 deg F.

In spite of having permanent fur coats and the house being warm enough anyway, both of her cats will sit in front of kitchen vents and become (I suppose) super-warm. Below is our big 17 lb male cat Shooting Star next to his vent.

Shooting Star is so named by Kate for the blaze on his nose, which looks like an exclamation mark, but to Kate looked like a shooting star. The name became shortened to Starter Kitty. Starter Kitty came to us at Thanksgiving of 2003, showing up in the back yard, killing and eating junkos at our bird feeder.

At one point he sat next to the back door (glass door). Kate opened the door and he walked in, v. calmly, and surveyed the house. It turned out he knew right away how to use a litter tray. It also turned out he was neutered...not one of the crazy feral cats that roam the railroad tracks around here.

At any rate Starter has been a member of the family since then. He’s an indoor-outdoor cat but is brought inside every night. The golf pro who visits next door tells us about the coyotes that live on the golf course, that he sees in the early morning out on the greens.

In 2003 Starter blended in with two other cats already in the home: Tubby, an old retired male cat, and Marlena, a fastidious female tuxedo.

Tubby and Marlena have since gone to cat heaven. Now Starter’s housemate is Pixie Dixie, a petite seal point Siamese, 4 years old.

What do cats have to do with dialysis? Nothing much really, except when Kate comes home from dialysis trembling and in poor spirits and no appetite, her two cats will gather round let her and let her pet them, if they’re not being troubled to sit at their vents in the matter of becoming toasty warm. 

You’re in the Hat

Feb 14/15, JD writing:

At 6a.m. on Valentines Day the outside temperature in the backyard was -14º (F).  The previous night my hand-made valentine’s card was printed out and rolled into a long-lost blue vase, put on the table next to the bed for when Kate would wake.

 

Two weeks previously the Dialysis Center had given us again a graduated orange plastic 4-liter container that looked like a lost milk carton. Along with the container came 2 hats as they’re called, that using your imagination you could picture Napoleon’s soldiers wearing them.

We got tired of looking at the hats and the orange container in the entry hall so Sunday Valentine’s Day was the start of a 24 hour collection of Kate’s urine. Every 3 months the Center wants (at least they say) the collection...another chore that proves you the patient can obey rules and make a good transplant candidate...

One hat gets taped (“upside down”) to the bowl of the downstairs toilet, and the other to the toilet in the upstairs Blue Bathroom. Good thing there’s the Green Bathroom, for me, the non-patient. Every six hours or so I empty the hats’ contents into the orange 4-liter and re-tape them back down.

On Monday morning her total this time was about 1100 mL. Over the three years on dialysis she’s ranged from 900mL to 1400. The calculation for normal production is this: 1mL/kg/hr. → 24 hr * 56 kg = 1344mL, so she was about 20% below normal this time.

The Center analyses her urine for “waste” products... urea and nitrogen. On a scale where 15 would be normal, and 10 the minimum needed to avoid dialysis, Kate is about a 4, so 40% of the minimum needed to be “healthy” is done by what is probably the 2% kidney function remaining. Over her 3 years of dialysis her percentage hasn’t changed much.

As far as we can tell, Kate is the only patient in her Center who produces urine worth measuring. An indication, I suppose, of her relatively good health. 

Still, it is a messy chore. We’d like the Center to be more enthusiastic about their request for the 24 hour urine. But bringing the orange carton back--lid screwed on tight--starts a game of hot potato: Don’t put it on the waiting room counter, don’t put it on the nurses’ station counter, put it over there in the corner...

And finding out later that the chemistry results are just like they were 3 months ago is a little disappointing... Better? Worse? Why not wait for six months next time?

But heck, this time we weren’t going anywhere. With the temperature below zero all day what else was there to do but stay inside and collect urine?!

Slice of Life

Friday Feb 12, JD writing:

When we woke up at 6a.m. the outside temperature at our Rumford RI backyard was 0º (F). I was going to take images of the forced hyacinths on the kitchen counter, but decided to wait until the late afternoon, for better light.

By the time we left for the Dialysis Center before noon the air was up to 30º. After she parked the M6 I trotted down the hill to catch a bus for my lab at Brown; Kate called me on the bus and said we forgot her reading glasses... [Kate had cataract surgery on both eyes (3 weeks apart) in the summer of 2015 and requested far vision as the default.] She needs 2.5Δ for reading/playing Solitaire on her iPad.

After getting off the bus and going to the Providence Athenaeum and my lab at Brown (intern at work) I doubled back by way of CVS to buy reading glasses, “off the rack.” When I exited CVS I ran into our Rhode Island Rose Society friends Angie and Mike, who offered to drive me the rest of the way to the Center.

As I gave Kate her next pair of reading glasses Angie and Mike got to see her in her chair, hooked up, 15 minutes from the end of her 2 hour 45 minute session. A and M learned all about the Dutch Fresenius dialysis machine, with its tubing of blood flowing in and out of the filter, through the peristaltic pump. And how Kate’s left arm fistula is the entry and exit for her blood detour. Mike marveled at Kate’s low blood pressure (90/60) and said “I could sell that on eBay!” Then some talk about A and M planning a trip to Amsterdam to see tulips (one million?) at the Keukenhof Gardens in April.

When the tech came to take Kate off the machine A, M and I left. I stayed in the waiting room and A & M took off. Kate weighed 54kg going out, from 56kg going in. She drove us home as usual, stick shift and all.

I got the snap of the hyacinths I wanted. Kate started going through her usual after-dialysis tremors and lassitude. Two days off until Monday! Her lawyer friend Tom, from Las Vegas, called, and they talked about the good ol’ days, before the real estate market in LV crashed in 2008. We took in a DVR’d episode of NBC’s Blacklist. Before bed, I read out 16º on the outside thermometer.