The "We're Being Kicked Out of Home Dialysis Training Tomorrow!", edition.

Yeah, the bulk of the training is over. We start doing dialysis at home on Friday.  Lol, I've changed my pronouns, haven't I. Dialysis is now a 2 person operation. We.  Us. Not just "I" anymore. I know I've gone over this before, but I just basically sit there and have dialysis. Brian does the bulk of the work. But first, let me explain where we are. 

The cycler and Pureflow were delivered last week. Cycler?  That's the actual dialysis machine..the kidney. Pureflow?  That's the machine that holds and creates the dialysate (fluid) that flushes out the toxins. The Pureflow needs to a water source.  Way back when, you needed to have a plumber come in and do a hook up...Medicare would pay for it. Now all we need is a water source. A device to use the nearest sink, via the faucet or the pipes or a washing machine is used for water input.  You hook up the tubing when it's time to dialyze. There is also tubing used to discard the waste. This goes to and down the shower drain. And when the treatment is over, all tubing is put away. Brian had to set this all up. We did have a hiccup with the water input. Dad and the condo plumber got it working. So as of last night, my cycler is ready to go!  

Brian is also responsible to set up the cycler for every treatment. This includes inserting the cartridge which is the heart of treatment, attaching all of the tubing, attaching the saline solution, making sure all of the tubing is free of air bubbles (snap and tap) , doing all the checks and tests, recording the numbers and adjusting the settings after I've been connected. He also administers all medications through the tubing and tapes my needles. He also has to deal with alarms and how to solve the issues.  Whew!!  What do I do?  I take my blood pressures, temperature, set up the syringes with the medications, set up my station to do the stick (cannulate), and finally, I stick myself. At the end of treatment, he removes my needles, clears and cleans the machine, discards the medical wastes and prepares the cycler and/or Pureflow for the next day. Whew, again!  And yeah, we were tested on all of this stuff. The total time is less than 4 hours and getting shorter as we do it even more. 

So back to Friday. We will finally do this at home. But don't panic. Our nurse will be at home with us on Friday. We are pretty much set up. I still need a little rolly cart for my medical supplies. The photos are the chair and cycler and Pureflow, and storage of the items.  

Well it's time to get ready. We start our watercolor class this evening. I'm looking forward  to it and am also looking forward to getting our lives back. Lol this past month has been pretty intense, but we're  ready to move on to yet another new phase in our lives!  I should be back to blogging on a regular schedule next week. You know in spite of the training, life has been going on and I got stories to tell!!! Have a great day. Stay warm.  Hire some kids to shovel the snow, if you got snow!!  

The "Week 3 (Already!) of Home Hemodialysis Training", edition.

Still no music.  Still training. 3 weeks!! How intense is that?!  We're doing modules on the computer while in the center...me in the dialysis chair and Brian sitting next to me. Taking tests. So many manuals and quick help guides. Brian is now certified to take blood samples!! He also injects my meds...through the tubing. ;-)   Still can't get him to stick me...but then again I really don't want anyone to stick me anymore. Lol. Although he is the master at removing the needles.  We've got the aseptic technique down to a science. Lots of Purel and lots of disposable gloves! 

Last week the nurse trainer told us we'd be going home at the end of this week. Yikes!!!  So then it started. Last week we were given a box that had the hook up for the water source. We finally got that working with the help of Dad and the condo plumber. The next day we were given boxes with saline solution. By the time we got home on Friday, we received a call informing us that the dialysis machine and the Pureflow machine will be delivered and set up Wednesday (today). Monday we got sent home with another box. I saw the needles, but I don't know what else is in there....I needed to get a recliner. That will be delivered tomorrow. And I had to talk with the company (NxStage) to learn how to order supplies. So the supplies will be delivered on Friday. Enough supplies to last until March!!!!!  Whoa. We made storage space, but I dunno. Lol. We may be overrun with boxes very soon. 

We also need a cart to hold the supplies we will be using during treatment.  Supplies such as gauze, paper tape, disposable gloves , those pads they put between my arm and furniture, in case of spillage and stray blood drops. We also need a sharps container..to toss needles and other sharp things and we'll need to dispose of hazmat materials and will need to dispose of all of that tubing!!  The dialysis center will be supplying us with most of the things we need.  Even the Purel! 

We have to record data  before, during and after treatment. We also need to fax the reports to the nurse everyday. The data is my pre-treatment weight, standing and sitting blood pressure, body temperature, an inspection of my access.  It also includes readings on the machine every half hour and my blood pressure. Oh yeah, we also get an automatic blood pressure thingy. The challenge is make the bedroom not look like a clinic. I think with the really comfy recliner, it'll work!  Lol. 

Finally, I'm already feeling the benefits of daily dialysis. The fluid gain is much less...because I'm not going days between treatment. This means less toxins and fluids to take off and a much gentler and shorter run. My labs are already instantly better because ...  Daily dialysis. During training I still have the weekend off and my Monday's are devastating to me because I haven't dialyzed in almost 72 hours. Well maybe I'm being dramatic. But I got used to small amounts of fluid gains. Over the weekend I'm back to the gains I had in-center.  The good news is, once we're home, we set the schedule. It looks like we're going to dialyze Monday, Tuesday, Thursday, Friday and Saturday. Off Wednesday and Sunday. 

We'll probably have one more week of training because my labs came back showing my hemoglobin was low. This means Brian will have to inject something called Epogen during some of my treatments. And he'll have to inject me with iron. The nurse will be training him on that. But for the most part we're doing ok. We're learning error messages and now to deal with them. Like yesterday, my venous pressure was wonky, but it had to do with the stick and how the needle moved during the taping. Taping of the access.  That's an art unto itself.  It doesn't seem that way, does it?  

We've just moved into this. It was scary. Still is scary, but not as much. Think about this. My life is in Brian's hands. How much do I trust this man?  Obviously, with my life!  So much thanks for him. I can't even know where to start. Well, I'm signing out. Looking for a 70 degree day today!  Have a great day! Photo of Brian doing his thing. :-D. 

The "Week 2 Is Over Already!", edition.

It's early in the morning, hours before we need to be at the clinic. Of course this is the time I'd normally be writing if I were incenter. Sometimes I still wake up around 4 AM, but not as often. Today is day 10 of training. The midway point. Brian and I have established a routine. Every other day he needs to replace the dialysate. He's got that down pretty well. He also has to set and break down and disinfect the machine. I prepare the items and the medicine. Yes, I fill a syringe. It was awkward at first, but not so much now. We cut the time from start to finish by 30 minutes in a weeks time. It's like all of a sudden it clicked. 

It clicked so much that our nurse trainer suggested we were ready to try it at home next week. Talk about 2 grown adults looking like deer caught in headlights!!  Lol lol. We still have things we need to sear into our routines.  Like I really need to remember to clean my access after I've taken the scab off. You say, "huh?"  Well, after the needles are removed, I bleed. A Lot. Copiously. No worries. I apply pressure on the 2 needle holes until they stop bleeding. And then they are bandaged. But scabs form. You know that. Whenever you bleed from a wound, scabs form. So anyway. Before my next treatment, I have to remove the scabs before I insert the needles. The scabs can be a pathway to infection and the last thing I want to deal with is a blood infection. Sooooo. Part of my stick routine is clean the access area prior to removing the scab..and yes I have a little scab removal tool. And once the scab is removed, I need to clean the area again. <------repeat Pat, clean the area again!!!  

Brian was doing great, then yesterday he'd forget to close a clamp here or there and we'd  watch the saline solution run out. I think that won't happen anymore. lol. But other than than were really doing ok. I needed to get an angioplasty on my fistula on Tuesday. I last had one in October 2013. It is considered maintenance on the fistula.  The procedure was ok, until I had a reaction to the the dye they put in. No worries, they pumped me up with lots of drugs. I was rather flighty when I came out. Oh and I was under conscious sedation. I was watching the procedure on a monitor. AND. The computer froze during the procedure.  So I also watched Mike the tech guy try to fix the problem. Lol 

The angioplasty solved some issues I was having, like my venous pressure was running high, I was having some clotting and my arterial access was taking longer than normal to stop bleeding. After the angioplasty, the next run was perfect!  

I'm liking this. My run times are about 2.5 hours. And I have the people I trust the most taking care of me...me and Brian. And I'm so looking forward to doing this at home. I liked the idea of home hemodialysis, but I was a little scared. Now, I'm all in!  

It's 5:30. Brian should be waking up in 30 minutes. My weekend plans are DSW. I have a certificate that will expire soon so I need to take care of that!  You have a great weekend and stay warm. :)

Photo is the angioplasty process. You a narrowed access, then a ballon is inserted to widen the acess, then the final product, a cleared access! 

The "Week 2 of Home Dialysis Training and Other Stuff", edition.

No music.  My routine has changed. I think after we finish training and I'll get an entire new routine.  But this is it for now.  This training is no joke. But then it's my life.  Ha!  5 days a week 4 hours a day. More or less.  The intensive part is setting up the machines. One is a cycler, which does the dialysis...removing the excess fluid and cleaning the blood. The other machine creates and holds the dialysate. This is the concoction that takes away the toxins.  Brian has to set this up every day and check everything. We also have to use aseptic technique.  Which means we wash our hands a lot and go though a lot of Purel, gloves and alcohol swabs. The needle stick is the easy part. Who knew?  Lol

So even with the training we still have stuff going on. Shawn went to Seattle and Brian and I took a road trip to Laughlin, Nevada.  For a chili cook off!  And we were not disappointed!!  The drive from Vegas to Laughlin was an adventure unto itself. Once we left Henderson, we were in the desert. We were in another valley and for as far as you could see was...nothing but desert!  And then we got to Searchlight, Nevada. Population, just over 500. With 1 gas station and a McDonalds. And 2 dive like casinos.   Never saw a house. Just trailers placed wherever. And the speed limit was 25 mph. Lol. And we slowed down. And further down the road was Cal-Nev-Ari, just as small, with the same housing, but only 1 divey casino.  Eventually we made our way to Laughlin.  

Laughlin looked stuck in  an 80s 90s time warp, but I think that was part of its charm. Anyway. We found our way to the Golden Nuggett and the chili cook off.  We made our way to the tent and got our tasting kit. The kit was a little cup, like a pill cup and a plastic spoon.  Cost $1.00 and we were off.  1st stop, Grandpa's chili.  The cook put out a spatula with a hole, just big enough to hold our tasting cup, I inserted my cup, and he put some chili in. Enough for 4-5 bites. Which really is enough if you're going to taste a lot of chili.  We made our way around the area and tasted a lot of chili..red chili, green chili, chili with corn, chili with elbow macaroni. No ground beef, but there was shredded beef, beef chunks and really fine beef cubes.  There was something I couldn't identify in the green chili....hominy?  We also tasted salsas. My favorite?  Chili with corn. Yes, I'm as surprised as you!  Lol. And yes, we got tired of tasting. Way too much chili!  Lol

After we voted for our favorite chili  we went into the casino, won a few dollars then noticed a down elevator.  Took us to water level and there was a water taxi!! We rode up and down the Colorado River. That was a treat. :)  the weather was nice.  And even though it was nice, 73 degrees, we questioned the people sunbathing!  We got that conflicting weather thing again ... sunbathers on the beach and the lady on the boat wearing a wool coat. Lol. Oh yeah. Lots of raffles at the cook off, including a tub of booze. No. We didn't buy any tickets!  

We left Laughlin and made it home before dark. Good thing we went Saturday. It rained all day Sunday. Rain in Las Vegas!!  Well that's it for today. Shawn left this morning. :-(  But Brian and I are on a new adventure. Life isn't stagnant and who would want it to be?  Have a great day. I'll be back...when I'll be back!!!  :-D    Photos of the desert. And 1 from chili cook off. Hey. I'm from the Midwest. 

The "It's Day 5 of Home Hemodialysis Training!" edition.

iPad shuffled to  Sir Mixalot, "Baby Got Back". Day 5 of training.  We're going to school. We were surprised that on day 2 we got got the baptism by fire. Lol. But we're getting the routines and processes. The best way to get it is by repetition, with our nurse looking over our shoulder!!  So now I'm dialyzing every day or rather 5 days a week. My time is down to 2.5 hours 5 days a week vs 3.5 hours 3 times a week.  And it's video time....see Ya in a few...OK Back. It's been several hours. 

It's difficult to write the blog while dialyzing because we are in constant training mode. Yes, training, even though I am  hooked up to the machine. Lots and lots of repetition. This is the best way to learn. It seems so intensive, but watching the nurse hook up the machine so quickly,  I'll know we'll get it. And everything has to be in order. And again, so much tubing!!!  We fly through the rubber gloves. It's all about protecting me from infection. And believe it or not, I'm less susceptible from infection  in the home environment than in the clinic. 

Even through the first week, we've increased our set up and breakdown  time. And we are slowly but surely remembering sequences. We're getting there!  I'm thinking that I won't be publishing the blog as often while I'm training. We'll see how it goes. 

Finally, home hemodialysis is probably the best possible treat except for a transplant (see diagram). I've dialyzed 5 days this week and have more energy at the end of treatment. By doing it every day, I'm not having so much fluid and toxins pulled of in a short amount of time. Also, the total time is, as I don't have to travel back and forth to the center.  The first is ok. I'm sure it'll get more intense soon!

Have a good weekend. We're heading to Laughlin for a chili cook off tomorrow. And Laughlin is in warmer than Las Vegas. Looking at 73 degrees. Loving It!!  Have a great weekend. Perhaps you should fix some chili. Kinda cold back home!!!

Diagram compliments of Dori Schatell. 

The "Home Dialysis Training - Day 3", edition.

iPad shuffled to Mark Ronson, featuring Lily Allen, "Oh My God". Well, I was just playing Mark Ronson song for Brian.  Today is day 3 of home hemodialysis training. I'll bet your saying what happened to day 2. Training is 5 days a week and I'm not trying write the blog everyday. Also, the first   2 days we were too busy doing stuff. Lol. Like watching videos on the set up of the equipment, on how to document, what to document, what the readings on the machine indicate. And learning the tubing. So.Much.Tubing. And lots  of clamps. But we're getting there.  

The Dramatics, "Oceans of Thoughts and Dreams". And now it's time for yet another video.  I stuck myself again. And will probably will do it forever...or until I get a transplant. And I'm thinking...what was I scared of?  It doesn't hurt.  I have the buttonholes. I'll review the buttonholes for you later.  It's video time.  ...  Back and I'm done and back home. The training video was a continuation of yesterday. It's about setting up the fluid that's used for dialysis. It's called dialysate.  OMG. Setting up the area for the dialisate is like setting up a computer, except with about 20 more connections lol!  We make the dialysate - A chemical bath used in dialysis to draw fluids and toxins out of the bloodstream and supplyelectrolytes and other chemicals to the bloodstream.  What makes it so tedious is making sure everything sterile and making sure there are no mixed connections. We don't want to mix intake with output. That'll put me at risk.  

No music. I'm home.  After I stuck myself, Brian secured the needles, and yes there is a specific process for that. He took the stats every 1/2 hour.  If the blood pressure cuff crapped out, he fixed it. When the time was over, he removed the needles and bandages the site, broke down the machine and discarded the tubing, needles and everything else. And he finally disinfected the cycler (cycler is what the in home dialysis machine called).  We have more to learn, but I do get that we'll learn best by repetition. 

Finally Shawn left for Seattle this morning for an archeologist conference. She'll return Sunday evening. That's about it. Temp registered 73 as we left training. I'm not as tired after the incenter treatment. So that's a good thing. Photo of Brian doing his thing. :)  Remember, the blog will be MWF around this time until further notice.  Have a great day..or evening...or afternoon. :-)

The "Home Dialysis Training - Day One", edition.

iPad shuffled to The Isleys, "For The Love of You". Well, today was day one of home hemodialysis training.  My routine changes dramatically during this time. We normally wake up at 4:00 AM on Monday, Wednesday and Friday. Every week, every month. Except if I travel. I'm in the dialysis chair by 5:00 AM. I usually leave the dialysis clinc around 8:50 AM. This includes getting of the machine and waiting for the bleeding to subside. Well today and for the next 3-4 weeks I start at 9:00 AM. We left about 1:00 PM. 

Tavares, "Check it Out".  Well, we still woke up,early. Lol. 4:45 AM for me and Brian around 15 minutes later. Brian was disappointed. He was prepared to sleep in and it didn't happen. The home hemo training clinic is a significant distance from where we live and its in an area we don't frequent often.  But we have been that way. I mapped it and we left 45 minutes before the appointment time. Good thing we did. I wrote the directions wrong. ;-/  We didn't get lost, but we over shot the street. At least I remembered the street name and fortunately Las Vegas is basically a giant grid..with a few exceptions.  We arrived at the clinic about 7 minutes early. 

The Originals, "Baby, I'm For Real". My nurse came out exactly and 9:00 and ushered me and my caregiver (Brian) to the training area. It's like a little hospital. A nurses station and four patient rooms. Except the rooms have dialysis chairs instead of beds. I weighed in, because that's what we do to see how much fluid (weight) we gained since the last treatment. I gained 2 kgs. Which is pretty good since my last treatment was Friday. Whoo hoo!!  We were lead to room 11. My very own personal dialysis room for the next 3-4 weeks. 

Guns N' Roses, "Welcome to the Jungle". The home hemodialysis machine was set up. Yes it's smaller than the incenter machine. The nurse attached tubes and the dialyzer and explained some things. I think the primary highlight was the number of documents I signed. For the most part the treatment was uneventful. For me anyway. Except the extreme cold. I digress. Brian, on the other hand had to jump right on in!  And no, we haven't got to the part where we start sticking me. What he did have to learn and do was take my blood pressure when the dialysis machine beeped, every half hour. That entailed pushing a button, then recording my blood pressure and heartbeat.  He then had to record numbers that were on the dialysis machine. At the end of treatment he had to record the summary of the run, which he could pull up from the machine. He also had to ask me the standard questions....do you have a headache? Are you cramping? Can you stand?  And a few other questions.  He also had to document my weight after dialysis and record it on the sheet for the next session. Keeping track of weight gain and to determine how much fluid to pull off for the next session. 

The System, "Don't Disturb This Groove". And that's pretty much it for day one.  I was able to leave my throw and my dialysis hat and gloves at the clinic because I have MY room! Lol. We also have a big ass manual we have to read and have homework !  We're smart. We got this. Lol

Isaac Hayes, "Joy". Well that all dialysis wasn't it?  Shawn is still here. Her friend went back to New York Saturday. Shawn has a side trip to an archeology conference in Seattle. She leaves on Wednesday and returns to Las Vegas on Saturday. Yeah, she'll eventually head back to Illinois. Classes start the 3rd week of January. What's the deal with this long break?  Lol. Not that I'm complaining. I'm loving having my baby out here with me. <3

Signing off Aerosmith, "Dream On". The Consumer Electronic Show starts this week out here. Over 160,000 people expected. And we live, oh, about 1/2 mile from the main convention center. Yeah, the convention is spread out over three locations. Anyway, we are close enough that people will start parking around the condo. It will difficult getting out the area...except we do have a secret entrance/exit!  And the cold freeze is over!. 62 degrees, baby!!!  Have a great day and stay warm!!!  

The "Starting The New Year With Post #300!", edition.

Ipod shuffled to Kool and the Gang, "Open Sesame".  Hope you had a nice New Yeat's Eve and a relaxing New Year's Day. This is post number 300. That's a whole lot of writing. I guess by now you know me pretty well. Or do you?  ;-)  Anyway. Tuesday right after I left dialysis, and I mean we were barely out of the parking lot, my phone rang. It was the home hemodialysis coordinator. Whoo hoo!!!  Yeah I know it wasn't the transplant call, but it's still a life changing call. The home assessment appointment is  next Friday. And then training will start. I'm guessing it will be 4-6 weeks from the assessment until I actually start. Sounds like I'm starting the new year out great. But. There's a ... BUT.

Chrisette Michelle, "Epiphany".  I get to treatment this morning. My tech greats me with, "I hear you're going to home hemo."  I say, "Yeah.  The assesment is next week.  I'm still here for a while". She says, "Oh. We've got you starting home hemo this coming Monday. The manager has filled your chair". *Sigh*. WTH?  I'll refrain from what I think about the manager. But. Really? REALLY?  I'll stop here. I'll think positive thoughts. I WILL show up on Monday morning for my regularly scheduled treatment. The (incompetent)  mix up is not my fault. Kinda blew the excitement about home hemo training. But as always, my glass is half full.  Because when it's half full, you can throw the remaining water into someone's face......  Moving on. 

The O'Jays, "Darlin' Darlin' Baby". When I last wrote, Shawn and her friend were staying overnight at Treasure Island. They had several 2 for 1 deals....and they missed all of them. Lol. Well, Mystere was sold out. They got tickets for the next night, Tuesday night. They still have the 2 for 1 buffett and the decided to pass on the 2 for 1 beer at the specified club. They were put off that the servers wore bikinis. I chuckled that I'd seen an ad for a New Years Eve party at that club called "Hoedown". With the photos on the ad, my mind sure did go there. Lol. They also purchased tickets for Blue Man Group at Mandalay Bay for Wednesday evening. New Years Eve. At 7:00 PM. The strip closed at 6:00 PM to vehicle traffic. 

Friends of Distinction, "Going in Circles".  We had to figure out how they were going to get to the Mandalay Bay. The solution came pretty easy. The condo complex is within walking distance of the South Tower of the convention center. And a monorail station is there. However, there really isn't a drop off spot and I didn't want to hold up traffic to let them out ofthe car. Vegas drivers are pretty brutal and impatient. But all we had to do is to move one stop down to the Westgate Hotel (formerly the Las Vegas Hikton). They were able to take the monorail to The MGM.  Mandalay Bay is kinda across the street from MGM.  They'd call us when the arrive back at The Westgate when they returned. Problem solved!!  Shawn, who basically grew up in Las Vegas commented that it was weird walking down the strip instead of driving". :)

Beyonce, "Love on Top". We live close enough to the strip to see the midnight fireworks, but it would require us to go to the condo courtyard. We don't face the strip. We were going to do it, but it got too cold.  Roflmao. 3 Detroiters and 1 New Yorker and we punked out because of the cold.  The fireworks looked just as cool on TV. The fireworks were lit from 7 casinos. They lasted 7 minutes and 11 seconds. ;-)   However, as cool as it was, we are used to 35 minutes of fireworks.  Lol. Let's see what they have the the 4th of July. 

Cameo, "I Just Want to Be".  On the dialysis front I've gone over the start of the home hemo journey. More to come. And. I made vegan red beans and rice for New Year's Day.  How?  Chop Red, green, yellow and orange peppers, onion and celery. Add vegan meat crumbles.  Sauté in olive oil.  Add vegetable broth. Add red beans. I seasoned it with garlic powder, cumin, paprika, red pepper flakes, bay leaf,  and salt to taste. I brought to a boil , then simmered for an hour.  Served over rice. I tasted as it went along. I thought it tasted good. And it was confirmed when every one had seconds!  Except I didn't eat any. :-(  I was afraid of the phosphourus. On the other hand I was impressed with my willpower. But. Why do I have willpower on some things and absolutely no control over others???  

Signing off Frankie Beverly and Maze, "Never Let You Down".  The young ladies want to go to the High Roller or the Stratosphere today. The went downtown and enjoyed The Fremont Street Experience. But it's still cold here. 29 degrees.  It will go up to the high 40s. And the sun will help. :-)  And no, no snow in the valley. The media was so disappointed. Lol. Have a great weekend. I'm back on my regular schedule starting Monday.