The "The Dark Side of Dialysis", edition.

Good Monday morning. The Monday after Father's Day. I treated Dad and Brian to Hot n Juicy. Their choice. It never disappoints!  

So. The dark side of dialysis. What do I mean?  It has to do with the (mis)treatment of dialysis patients. There are approximately 400,000 of us who need dialysis. Most of the patients are going to dialysis centers.  And most of the dialysis centers are run by 2 large companies..Davita and Fresenius. Now CMS, the Center for Medicare and Medicaid Services, a government agency, "oversees" these companies. If a patient has an issue with their treatment, or their dialysis clinic, or the corporations, the issue can be mediated by CMS after going up the chain. Because the care of the patient should be the highest priority. Right? Life over profits, yes?

Well.  No. Profits first. Look. $77,000 per year per patient. $77,000 x 400,000 = $30,800,000,000.  Whoa!  There's money to be made and they can't have patients rocking the boat now can they. What do I mean by rocking the boat?  There are standards of that should be maintained. First and foremost is the cleanliness of the facilities. Dialysis patients are highly susceptible to infection. Clean and sterilize facilities are (should be) mandatory. The patients have large needles put in the arms at least 3 times a week by technicians. The blood of the patients is being moved out of the body through a dialysis machine, cleaned and returned to the body. Now there are a lot things that the blood flows or the needle access that need to be sterile. Lots of places for failures. 

Now you'd think the dialysis patients have the right to question procedures when it comes to them. Infections could kill us. Once, in my center in Detroit, I asked my tech to change her gloves. She complied with no questions. But some techs get an attitude. Once I saw a tech start to use a dialysis needle on a patient that had been removed from its sterile packaging. A senior tech read the riot act to that tech. When a patient finishes treatment and is off the machine, the machine and the chair is wiped down with industrial strength wipes. The center also had a cleaning staff. But this was in Detroit. At a private dialysis center. With lots of staff. 

I moved to Las Vegas and ended up at a corporate run center. The differences were mind boggling. The ratio of staff to patient was much larger, which meant the techs were rushed and more prone to mistakes and cleaning and sterilization was not as thorough. And the staff was stressed and there was high turnover. Not good for the patients.  

So sometimes patients rightfully complain. You'd think that would fix the problem. Heh. No. The complaint can start a retaliation of the patient who has the audacity to complain. A patient may complain that a tech causes pain while inserting the needles. There are incidents, too many to count, of the tech going out of the way to make sure the stick is painful. Or ignoring the concerns of the patient. And if the patient is really lucky, management will side with the employee, disregarding the concerns of the patient. And should the patient take it up the chain to the company, the patient will be labeled a troublemaker. So now the patient lets his concerns be known to CMS, but CMS sides with the company a majority of the time. So now, the clinic gets to kick the patient out of the center. 

But wait. There's more. The dialysis center will blackball the patient and other dialysis centers will not accept the patient. You understand that this is life threatening. Basically a death sentence. They say hey, you can go to the emergency room when you need treatment. But the ER will only take you if you are about to die..potassium levels and phosphourus levels elevated, excessive fluid retention, pulmonary edema. All because the dialysis has the ability and the right to deny service. Ugh. 

I was a pretty good patient. At least in Detroit. I crossed swords with a tech once. I was about 15 minutes late. She tried to fuss at me. Bitch, I'm a grown woman. Get out of my face. I'm late because I as having digestive issues. I could have been on time and pooped in the chair for you. I chose not to. But she kept on. How they'd have to change my chair time. I told her to get out of my face and send the charge nurse over. Lol. I actually did the talk to the hand thing. The charge nurse talked to the tech and I never had to deal with the tech again. And my time didn't change. 

In Vegas, my issue was with the charge nurse and my nephrologist. They treated us with contempt. I wasn't having it. Fortunately the social worker was my advocate.  Oh. Did I mention that the majority of patients kicked out of centers were people of color?  Anyway. I'll have more on this later. A slide show passed through my timeline about an organization, Dialysis Advocates. They work with people up and down the chains to make sure people are not mistreated and right the wrongs. And yeah, I have none of these issues because I do my dialysis treatment at home.  

That's it for today. Cooler here than Detroit today. Without the humidity. But don't worry. Back to triple digits by mid week. Stay cool and enjoy your day! 

The "Trying This Again", edition.

Good Tuesday morning. I'm giving this blog another chance. The past several times I wrote, the software sent my post into cyber nothingness. Seeing an hours worth of work vanish is oh so not rewarding. Ugh. 

So minor updates. My phone died a horrible death. Actually the charger port died.  We know it was the port because when we took it to the Sprint store, the guy recharged it on a wireless recharger. Anyway. Sprint tried to repair the phone. They couldn't. I got a new phone. I was able to recover almost everything. Photos included. And Sprint gave me a loaner phone. I'd call it a lame LG, but a lame LG is better than nothing. Tip. Get the insurance for your cell phone. Anyway, we went ahead and got the wireless rechargers. I like it. 

My laptop was cranky. Whenever I went into MS Word, the screen would blackout. Every time I typed, I'd have to touch the keyboard to bring back the screen. That. Was. Painful. Took it to Best Buy. The guy fixed it for free..just needed some updates. And my iPad is sputtering. It's lived a long life!   Lol. Got it before I started dialysis. Holding on. 

Glen got neutered and chipped last week. He came home drugged and with the cone of shame. We got him a neck pillow. It's better than the cone, but it still looks uncomfortable. One more week for that. He also got the ID microchip. He's still a puppy, but he's mellowing out. 

Dialysis is ok. It keeps me going. Heh heh. I still do the meds and food juggling act. My blood labs will certainly tell on me. By for now, everything is ok. I'm low on my protein intake. Not sure what I can do to increase it. The dietician has threatened me with a protein drink. Ugh. Bleah. Yuck. I've been chickening and shrimping and egging. The good news is my phosphourus is ok. Just need to watch the beans, nuts and dairy. The potassium runs low, so bananas, orange juice and avocados are Ok. Yay!!!  

We got a letter from the HOA that indicated we needed to paint the garage door. They specified the color paint and where we could buy it (!). We also made a request to the management company to check in the roof. So the garage door was our responsibility. We got it done and it looks good. The roof is the responsibility of the HOA. About 2 months ago someone came out to inspect the roof. And then we heard nothing. Until last Monday when a crew showed up. They literally redid the roof. 3 days. In the hottest weather of the year to date. The noise on the roof worried Glen. He kept looking up!  Lol. 

We tried a new restaurant, Oyster Bar at Sunset Station. I got the pan roast. It's shrimp, crab and lobster in a tomato, cream and brandy sauce with rice. And you determine the spice level I got a 7.. Out of 10. Tasty!  And no, I don't do oysters. :-(  

That's about it. Dad is doing great. Brian is wonderful as always. Shawn is on the west coast and that makes me happy..even if it's Oregon. Hot again this week. Stay cool and have a wonderful day!  

The "Just a Day..and a Procedure", edition

Good Tuesday morning!  I slept well last night. And most of yesterday afternoon. Let's start at the beginning, Monday morning. We started the day at Heritage Park Aquatic Center. We're on the northwest side of Henderson. The pool is damn near in the mountains on the southeast end of Henderson. Literally cross town.  As a matter of fact I can see the roads dead end into the mountains or the desert near the pool!  Lake Mead is basically just over the southern mountains. I digress. 

We get to the pool, change clothes and head in to the pool area. Yeah, the lifeguards know our names now. They're mostly kids and are amused at the antics of "seniors" at deep water fitness. Brian and I are at side of the pool with the more "vocal" swimmers. Heh heh heh. Again. I digress. 

The class before us is finishing up. And the members of our class are straggling in. Oh yeah. Our instructor is a tiny little thing. With the voice of a drill Sargeant. I can hear her while I'm in the dressing room!  Once class starts we move nonstop for the next hour. Legs, arms, core, balance, stretching, resistance, range of motion, cardio are just a few things we work on. We use barbells, noodles, fins, parachutes, kick boards, and tethers. Not on the same day!!! It is work. We bitch and moan. An yet we still show up!  Lol. When we finish and get to the locker room, there is a lot of sighing and deep breathing. We just finished moving for an hour...non-stop. We complain and then show up for the next class. Lol. And yeah..it's worth it. 

Our next stop was breakfast. Metro Diner. It's pretty good and there are some good breakfast choices. And they have the best hazelnut coffee!  Portions can be large...that seems to be a "thing" in Las Vegas...ridiculous portions. Time for me and Brian to share meals. I digress. 

We head home and rest from the workout because I have medical procedure at 1:00. A dialysis related procedure. I read my instructions at the diner. No food 3 hours prior to the procedures. Whew. We finished breakfast just after 10. We chill and entertain Glen until it was time to go. The Vasvular center is clear across town in Las Vegas. We try to plan the route and time because there is a massive construction project on the busiest freeways in Nevada. So then the streets get congested. Anyway. We timed it ok and arrived before 1:00. I got called in the back just before 2:00. It was busy. Oops, lots of people needed procedures. 

Let me backtrack. We are at a vascular access center.  This center services dialysis patients. Our access are our lifelines. Literally.  If the access clots, closes or blow, or any of a number things, we would be unable to do dialysis. And so then we'd die. So what usually happens is your access may clot or close up over the weekend. Or even overnight. I call my nurse who calls the access center to  schedule the appointment. On this Monday there was a steady stream of patients. For my case, it wasn't a dire emergency. My nurse gave me a work around , but the issue still needed to be addressed. 

So finally I'm called back. Brian comes with me. I chuckle at the size of my file.  I think this is my fourth time there. The nurse assures me my file is small!  Lol. We go over my meds. I remind her that I allergic to the dye...that's injected into my access to see where the blockage is. It's in my record and the solution of using benedryl is there.  So the first time I had the procedure, I had an immediate bad reaction to the dye in the middle of the procedure...the team of course, was professional and addressed it immediately and moved on. 

I'm prepped on a table. I'm hooked up to the automatic blood pressure machine. Some nodes are placed on my back and chest. I get the oxygen tube. My left arm is stretched out palm up on an extension of the table. It's get washed with blue stuff. A glove is put on the hand. A paper barrier is put up between my head and arm so I can't see what's going on. Boo. On my left side are 2 monitors. So I can see as the doc is looking for blockages and I can see when the balloon is inserted for the angioplasty. Doc gives me fentynal (?), benedryl, and inserts the dye. I actually taste the meds as they are administered and then get high. It's conscious sedation. I'm aware of what's going on and what's being said and the team is talking to me..but I feel...loopy. The procedure is fine, although I can feel when the balloon is expanded.  Lot. Of. Pressure. I squealed. Doc apologizes. Lol. Mission accomplished. 

After the procedure I go back to a recovery room. My stars are good. Doc explains what the problem was and what got fixed. I get apple juice and animal crackers. Put my shirt back on. No pressure on my left arm. Can't even use it it stand up. Done by 3:00.  We leave. Brian picks up some chicken. I slept on the way home. Because drugs. We get home, I stagger into the bedroom and fall asleep. I thought I'd watch the news but it was after 6:30 when I woke up!  At a little. Went back to sleep. Because drugs. Woke up just before 11:00. Geez. Strong drugs. And I'm sure recovery of swimming figured in there somewhere. And then.  I slept all night. Geez. 

But now, I'm just fine.  Back to running errands today. Massive hugs for Brian for bring there. At one point I woke up to find a blanket over me. I know I didn't do that. <3   

So there you have it. I needed the procedure, but it was just part of my day. I've had it several times. It's still kinda scary because it's a procedure. But you roll with the punches. It's part of dialysis. And there was a steady stream of dialysis patients at the clinic getting procedures. 2 doctors.  2 teams. 2 procedure rooms. Of course I was clowning. And during recovery, a patient in the stall next to me waiting for the procedure (his first time) starting clowning with me!  Lol. 

That's it for today!  Looking at the 80s by the end of the week. Time to pull out the sandals. And yes, I had my pedicure last week!  :-D    Have a wonderful day! 

Procedure room. 

Angioplasty. Before balloon. During balloon and after balloon. Blood can now flow freely!! 

How the fistula works. We don't want a blockage here. 

The "March is World Kidney Month..But You Already Knew That", edition.

Good Wednesday afternoon. It's World Kidney month and it time to remind you to get your kidneys checked. Clearly you don't want to me writing a blog about kidney failure. Nor do I want you too. Get those kidneys checked. 

Yes, it's afternoon.  I've been to deep water fitness, the credit union and my monthly care team appointment. And we stopped at Home Depot and got 2 large purple hibiscus plants in pots. They are the first of several potted plants were getting for our cute patio. I also want some impatiens.  They should do well. There is an ulterior motive for the plants on the patio. The gated community has a few grassy areas.  And the back our home has one of the largest grassy areas. And the back of our house faces the street, as does our patio. The yard is maintained by the HOA. And the yard guys are doing stuff in the community every day. The landscaping is beautiful. Anyway. There is a demarcation of our "property" and the grassy area/lawn. People walk their dogs there on the lawn. And before you freak, the dog owners have to pick up the doggy poop. That's fine. I just don't want dogs nor their people encroaching too close to our patio...hence the plant and flower barrier. Also Glen raises hell when the dogs and people get too close. So the people walking their dogs don't linger. It sounds like we have a vicious dog inside. Lolllolololol. 6 month old puppy. Lol. I'll be getting 3-4 more plants and Brian will put his herb garden planter there also. And yes, we have room for a grill and patio furniture. Coming soon. 

Oh yeah. The HOA posted a note reminding people to pick up the poop. Otherwise they'll hire a company to do it and raise the HOA fee. :-{  I'd be really pissed if I didn't have a dog and that's why my HOA fees went up. 

Speaking of Glen, how's he doing, you ask. He's a hoot. Got a haircut. He was looking a bit wild. So he looks more like a westie and less like a puppy. But make no mistake, he's still a puppy. He hurt his leg a few weeks ago in a barking frenzy. He dove off a chair to raise hell and fell with a thud. He "oomphed" and kept on going, but with a limp. Brian got him to the vet. No breaks. Whew. But a bruised something. Have him take it easy. Ok. Sure. Easy that first day as the vet gave him some drugs. But after that?  He still ran...and he ran like hell with 3 legs. It didn't phase  him at all lol. But he couldn't jump up to look out the window.  He also missed his obedience class.  By the next week, the limp turned into a skip and he eventually was back to top of the sofa barking at dogs and people passing by. And chasing toys, and knocking on bedroom doors for people to come out...puppy stuff. And he went back to class this past Saturday. So he's fine now. I think in his mind he was always fine!  

Finally on the dialysis front.  It's going ok. I had a double dose of iron injections today so my energy level should go up. My arterial buttonhole started leaking blood about a week ago. What happened was after I finished treatment, there would be blood on the gauze when we removed the bandage. And each successive time there would be more blood. Ugh  My nurse wants me to start a new buttonhole.  Boo. I'll have to stick myself with a sharp needle in the same hole for 3 weeks to establish the buttonhole, about 12-15 sticks. Boo.  My nurse started today. For the first time ever the needle stick hurt. Bleah. And I now have to visit the vascular surgeon next week. I guess I'll get a fistulagram and angioplasty. Ah well. The life of a dialysis patient. For reference. The fistulagram is where the doctor looks at my fistula using ultrasound. If there is a narrowing or blockage then the angioplasty is in order....insert a balloon in the fistula(a man made created vein where I stick in the dialysis needles) and the balloon expands the fistula. No. It doesn't hurt, but then I'm in conscious sedation anyway. I get kinda loopy. Lol. 

Also the ablation procedure I had a while back has been successful. I no longer have to take the meds to control my parathyroid and the lab numbers are stellar. My entire team is ecstatic. Whoo hoo!  

Oh yeah. It's pollen season here. Let the sneezing, sniffling and snotting begin!  The wind kicked up and we saw the pollen blowing off the trees!!!!!  :-(     I though it was dust or sand  at first, but there wasn't any sandy land near us.  And oh yeah. I got some wind chimes for my patio!!!  

Well that's it for today. Not missing the snow in Michigan. It's 75 here. Heh heh heh. 

Purple hibiscus. Pretty! 

Glen before trip to groomer.  

Glen immduately after trip to groomer.  Yeah, it's the same puppy! 

The "I'm Still Here", edition.

Good Wednesday morning. It's been a while. It's also National Kidney Month. I haven't been motivated to write. No idea where the motivation went. Blog topics used to crowd my brain so much that I'd have weeks worth of material. Now, not so much. I'm sure it's because of my treatment schedule. When I was in center, I had 3.5 hours 3 days a week to write.  It was consistent. Once I switched to home hemodialysis the treatment time changed. And I wasn't as bored since I was home and had Brian to talk with and...I was home!  Plus treatment was in the evening. Then I switched to nocturnal home hemodialysis. So I'm doing treatment at home, in my bed while I sleep. Can't write while I sleep!  And then we got Glen the puppy, well, time became even more scarce. Anyway. It's time for an entry. 

It's been over a month. So how's it going?  The dialysis front has been ok. My phosphourus spiked to a dangerously high level. I got it back down. So my labs are fine but I still can't get to the protein level. The magic number is 4.0. I hover between 3.8 and 3.9.  Lol. No one can eat seven servings of protein a day. My parathyroid levels have stabilized much to the delight of my nephrologist and endocrinologist. And me, too. Looks like I may not need another session of sticking a needle in my neck. {{Ugh}}. What puzzles me is the idea of doing a series of injections in ones throat makes people cringe, so they'd rather have throat surgery?  I look at this way. 1-4 injections over time if needed. Or having my throat slit, parathyroid removed and a prolonged hospital stay while my calcium levels are stabilized. Oh yeah. I've had breakfast immediately after the injections. No they don't hurt...local anesthetic. Yes, the IDEA of a needle in my throat is disconcerting, but it's in and out. The doctor using the ultrasound on my neck is worse than the injection. Ok. Enough of that. 

A few weeks ago a friend from high school visited. She was going though some challenges the same time I started dialysis. Look at us now!  It was an absolute delight to see Doris!! She stayed with friends. When I looked up the address I realized her friends live very close to where swim!  Walking distance!  She wanted to go to a Chinese restaurant since it was the start of the Chinese New Year. Well Las Vegas has a huge Chinatown. More like Asian town. Anyway. We went to Joyful House Chinese  Restaurant.  Family style. Not like Stanley's. Very very good. Table had a lazy susan and we rolled that baby around trying out food. We'll be back. Enjoyed seeing Doris!  Lots of hugs!!

Then. One morning a few weeks ago I get on Facebook and find it that a good friend from elementary school had died. I'd known him 5th grade. Cliff had a radio program in Detroit and called me to ask for an interview after the shooting here in October. He wanted a Las Vegas resident perspective.  I told him I live 7-8 mile away from the area. I did the interview anyway. I did have have some local news that hadn't made it nationally and relayed it to him. How about that? Afterwards he called to thank me and we talked about way back when. He also was a kidney transplant recipient. His younger brother Michael donated a kidney. Cliff and Mike have been very supportive of me during my kidney failure journey. Cliff will be very much missed. 

Finally Glen. My fuzz ball. He's doubled in size and weight, on his way to becoming a cinderblock. It's time to get a larger travel crate. He's mostly house trained. Not bad for 6 months. I took him for a haircut. It was pretty disastrous so I'm going to try it again this week. Glen and Brian started an obedience class. Glen was just delighted to be in a park with other dogs. He did do ok though. And then.  While barking maniacally at anyone and anything that passes in front of the house, he jumps of a char and injures his left rear leg. Brian rushes him to vet, he gets X-rays, no broken bones. Just a bad bruise. They gave him painkillers. He was out for the rest of the day.  He's getting better. Get this. I'm on the floor with him hugging and comforting him. Dad goes into the kitchen. Glen races to the kitchen at Mach One speed on 3 legs. Lol. He's just now back to jumping on the back of the sofa to look out the window. He's doing fine. 

Well. That's it for today. This is National Kidney Month. Get those beans checked. You know the drill. Have a great day! 

The "Trying to Normalize", edition.

Good Thursday morning. (Yes, it's now Sunday...I got a little busy!) Feeling a bit contemplative this morning.  Several events in the future are coming up...out of state. Thinking of the logistics make my head hurt.  The regional conference for the sorority is in Tucson, AZ, March 8-11. Then there is the national conference in Houston in early July, 7 days.  Then there is a high school reunion in Detroit at the end of July, 2 days. I'd like to go to all. But logistics and planning. Dialysis!! :-/

Yes, my dialysis machine is "portable". All 75 pounds portable. But there is so much more than just the machine. There are the supplies that go along with it. Some supplies we take with us. Some supplies are shipped by my dialysis center. And some supplies are shipped by NxStage, the dialysis machine company. I am responsible for..and there must be enough for each day and extras for that just in case error.."portable supplies".  So for each treatment I will need...2 bio hole fistula needles (pic below), 2 syringes without needles, 1 syringe with needle, plastic tape, paper tape (to secure my needles), gauze pad, sterile pads, medications, alcohol wipes, betadine wipes, sterile gloves, face masks, Purcell, antibacterial soap, blood pressure cuff, thermometer and paper towels. I draw the line at the scale! We also need a sharps box to dispose of used needles and syringes. 

The dialysis clinic ships saline bags. Nxstage ships cartridges for the dialysis machine and the bags of dialysate. 7 bags of dialysate per treatment. Each box holds 2 bags of dialysate. Lots of boxes. And. NxStage will only ship for trips of three days or more. *Sigh. 

So. For Tucson, I can dialyze the evening of March 7, fly into Tucson on March 8, then fly back home on March 9 and for tratment when we get home. The no treatment out of town option. Or we can do the all day drive with all of the equipment. Treatment on March 7 evening. Free travel day on March 8. Treatment on March 9 and March 10. Travel on March 11 - no treatment. And resume treatment March 12 at home. I forgot to mention that I have to change how o do treatment when I travel. At home I do it during the night while I sleep, 5-6 hours,me very other night. I have a special unit that I use instead of the dialysate bags.  But when I travel, it takes too many dialysate bags, I have to do treatment 3.25 hours 5 days a week. Yeah. Trying to figure out equivalencies. And yes. It is a hassle. Will it be worth it?  I'm still thinking about it. 

For flying to Houston and Detroit, it's actually easier. We've done the week long trips before. I have a hard case suitcase just for supplies.  And yes, there are some parts of the dialysis machine we have to disassemble for it to fit into the travel case...like the IV pole.  So we're also transporting tools. Anyway. I also opt to travel first class now because of the equipment. Even with out first class there is no additional charge for medical supplies. It just makes the travel a bit easier and less stressful. 

When we fly we have 5 pieces of luggage. The 1-dialysis machine, 2-the supply suitcase, 3-the handcart for the dialysis machine, and 4-a suitcase for Brian and 5- a suitcase for me. And of course our carry ons. And because we've contacted NxStage and my nurses, our other supplies are waiting at the hotel. And yes, I'd contacted the hotel ahead of time to let them know that packages will be delivered in my name. And no, I've never had an issue. I've detailed the experiences in previous entries. 

So. Right now Brian and I are debating what we're going to do. We both really want to go to Tucson, but the hotels are filling up quickly. Perhaps another time. We'll see. 

That's it for today. This week we'll have some Las Vegas winter. Got up to 70 yesterday. Today it stays in the 50s with the high 30s in the evenings. No regrets. None. Some one asked me where I was from. I said Detroit. I was corrected. I am now from Las Vegas. Detroit is my hometown. I concur. Have a great day!  

My home hemodialysis set up.  Those things that say15G are the needles I insert into me. The vial of medication is heparin. It prevents clotting. Clotting during treatment sucks. 

The hard case for flying. It weighs 24 pounds. So with the NxStage weighing 75 pounds it's just light enough for free. Heh. 

For the road trips. The hard sided case is mandatory for going thru checked in luggage. We've seen that 99 pound package on a carousel. Who does that? Lol. 

The "I Have More Than a Doctor, I Have an Entire Team", edition.

* I started writing Friday morning. Finished today, Sunday morning. Don't judge! 

Good Friday morning. Heh. I'm trying to figure out where did the week go. Somehow I'm stuck on Thursday, even though I've been to my Friday deep water fitness class. And by the way, the instructor took great glee in kicking the collective asses of the class!  I've digressed....but...the instructor is part of my health care team. Huh. I'm having trouble typing and keep getting crew, instead of team.  I like the term crew. My health care crew it is!!

Let's start. When I first started dialysis in November 2012. Yes, it's been that long. I had dialysis techs, a social worker (team), a dietician, a team of nurses and a nephrologist. I learned to understand the role of each and it worked out well. I've kept in touch with one of the social workers since I've left the state. And she is  sorority sister.  I'm also in touch with one of the nurses, since I've left the state. She is the sorority sister of one my buddies from high school. Small world, eh?  These 2 women set the standard of what I would expect when I moved to Las Vegas. 

A quick statement on the team when I moved to Las Vegas. Culture shock. Social worker was instrumental in helping me with health insurance and getting me signed up for home hemodialysis. Dietician helped with some meds, but she left within a month of me starting. Huge turnover in staff and the number of staff paled in comparison to the staff in Detroit.  Nurses were cool. My assigned nephrologist was a prick. The charge nurse was a bitch. And I stood my ground. Lol mi was the person who had troublemaker tendencies. Eh. I stand up for myself. I started home hemodialysis training just before things went bad. Lol. I wasn't taking any shit. My Detroit staff made sure I had high expectations. There was a tendency to treat dialysis patients poorly.  No respect. None. So anyway I was out of there. 

Which leads me to my current crew. I have 2(!) nurses, a social worker, a dietician, a nephrologist, and a case worker from my insurance company(!). I meet with them monthly. I also have the primary care physician, a vascular surgeon, a cardiologist and an endocrinologist. That's a lot of people!  And I've included my trainer in the mix. It's important that they all keep in sync regarding my health. Of course there are hiccups. And the primary care physician is the most worrisome...he attempts to second guess the specialists (eye roll). 

My crew is incredibly supportive. I listen to them. And this is the important part...they listen to me!! I've been reading about dialysis patients that have an assortment of issues with the technicians, the nephrologists, their primary care physician, nurses, etc. I can't begin to understand why. But here is my takeaway. When it comes to your health, be informed, stay informed and be an active participant in your health care. It truly could be a matter of life or death. Feel free to question any member of your health care team. You know you and your body better than anyone. My crew works with me, each and every one. And I appreciate them so much. And it makes living with End Stage Renal Disease a bit more palatable. I do have some control over my treatment...and my life.  

That's it for today. Checking out the weather in Michigan, I'm not missing winter. Glen is doing well. More on him later. Have a great day!!

The "It's 2018!", edition.

Good Tuesday morning!  It's sad that I've lost track of days. The holidays did that to me. Ah. But we had a great time!  Shawn arrived a few days before Christmas. She left Monday morning. Had to be back to work today.  Boo. 

Let's start with a recap. I started dialysis in November 2012. Moved to Las Vegas in July 2014. Started training for home hemodialysis January 2, 2015. Transition to nocturnal home hemodialysis March 2017. Started the blog in February 2013. There have been 548 published posts. There are 17 posts I never published...lots of reasons...to painful, lost interest, or even the I was rambling and babbling reason. Over 41,000 page views. The average number of page views has increased since I started. The most read post is a post I wrote about the death of Denise Matthews (Vanity of Vanity 6) on February 16, 2016 with over 300 hits. The next closet post is near 150 hits. I'm surprised that this post keeps getting hits. People find the post by doing an internet search on Denise Matthews or Vanity. 

I get hits from other countries. The top five ( not including the US ) are France, Russia, Germany, Ukraine and Brazil. Germany I get. I have a cousin who lives there. But Russia and Ukraine?  Yeah. Ok. I also get hits from the UK, Ireland, Australia and India. I know that dialysis patients for those countries are members of various dialysis groups I belong to. As a matter of fact, when one of the groups met here last fall, I met a lady from Ireland. Some people have searched for Moscato, Ron Isley and Amtrak and have been led to the blog. Lol. A lot of stats. Only got 2 followers, though. I'm good. 

So what have I learned from writing a blog? First of all I have a rolling record of my life since I started dialysis. And since I use a Facebook to link to it, I get the old links in memories. And I read them. I read stuff I forgot about!  That's not a bad thing. It's interesting reading about things I did, events in my life, recipes, or my state of mind. I'd recommend keeping journal. I know I've forgotten more than I realized. 

Ok moving on. We had a small quiet Christmas. The gift giving was kept at a minimum and that was fine. We enjoyed the company of each other. And enjoyed the hell out of the puppy. Lol. Shawn and Glen got along wonderfully. Glen needed someone who would get on the floor and roll around with him. Clearly Brian and I don't get in the floor on a regular basis!  And as much as Dad would like to get on the floor, he's pretty sure getting up would be a problem. Lol. 

Plans for the year?  Well Brian got me a Fitbit so I'm tracking my movement (and my sleep?!?). My trainer has increased the intensity of my workout and increased the weight of the club and ball and weights. I bitch and moan and then I do the exercises. Lol. In deep water fitness, I'll move to the heavier floaty barbells and will use the floatation device less. And with both I'll be tired and hurting, but I'll get stronger. 

My over health is fairly good, considering I have no kidneys. I probably take a minimum amount of pills  that most dialysis patients take. My blood pressure is chronically low. Lol. My BP this morning after last night's treatment was 65/46. That's low even for me. So yeah, I have pills to raise my blood pressure. I was on hypertensive meds before I started home hemodialysis. Within 2 weeks of home hemo, I had to discontinue the pills. Lol. One med was discontinued last year because I started reacting badly. The new remedy is a series of injections which is working. I take vitamin D daily and get iron injections every 2 months. I take a med to control my calcium and a med to control my phosphourus.  Kidneys control a whole lot and not having them creates a specific dance with meds and nutrition. Get those kidneys checked! 

Well. That's it for today. Oh future plans?  We're trying to figure out the logistics to taking the pacific coast train ride from LA to Seatlle with my dialysis paraphernalia. We'll figure it out!  If you're in one of those cold weather zones stay warm!  And happy new year!!!

Sitting on Dad's lap. 

Sleepin on my legs.  I'm stuck now! 

My Fitbit. 

The "The Christmas Recap", edition.

Good Tuesday morning!  Whew! We finally made it past Christmas Day. Now it's the run up to New Year's Eve and New Year's Day. And counting down the days until Shawn leaves. /Cry.  Anyway. We'll enjoy every moment until then. 

So how is it going?  Well right now I'm in the bedroom listening to the puppy trying to get into the room. Based on previous experiences with puppies, we limit where he can go in the house. All bedrooms and bathrooms are off limits. He has discovered he can open some bedroom doors. Anyway. We get up Christmas morning. Brian walks the dog, he and I have our Christmas coffee (coffee with Baileys), Dad lets us know he's up and we wait for Shawn. She gets up soon enough. We play Christmas music and pass out the gifts. Glen was the one that made out with all the presents this year. Lol. I purchased 2 toys early on and Shawn got him a toy. Saturday Brian and I went to Petco and guess what?  The toys were on sale!!  I don't know how many I bought...maybe 7,8,9?  Lol. Anyway. We put all of his toys in a gift bag. I put the bag on the floor and let him go at it. His head went in the   bag and the tail wagged!  He eventually tipped the bag over and all of the toys spilled out. He entertained himself with his toys for the next 45 minutes!  He did that one toy in his mouth and push or roll another toy around thing. Every now and then he'd bring a toy over to one of us to play tug, fetch or keep away. And that was enough excitement and activity that he crashed and burned for a good part of the day!  And I mean he went and crashed in his crate!!!  Lol lol. 

I got Brian a bunch of shirts and a gift card from Dillard's. He lost some weight and his clothes were ... big. Lol. Shawn had purchased a new computer. So Brian and I paid for the extras, at her request. We went to the Microsoft store at Fashion Show mall. Made the Apple Store look like amateurs. And the MS Surface pro. Wow. So light. Makes our laptops look like tanks. :-(  Dad wanted and received a new wallet and somehow a gift card to his favorite store got in the wallet. I asked for and received slippers..the tile floor is cold, a humidifier..the desert is dry, and a Fitbit...it's waterproof and can go into the pool with me!  It was a nice Christmas and we had pretty much agreed that the new house with the new stove, oven and dishwasher was the real Christmas gift for the family. <3  Loving my kitchen! 

We finally mastered the art of a small dinner. I have to add that we had a few hiccups. So. We had a rib eye roast, greens, cornbread, fancy rice and potato salad. Potato salad was made the day before. I must say that it takes me hours to make the potato salad. Brian and Shawn helped. Took less than 2 hours!!!!!  Brian thought he forgot an ingredient. Rushed to the grocery store to get it, and the when he got home he found the forgotten item (!).  Oops!  

Christmas Day, I planned to start the greens at a certain time, then I realized he'd purchased bunches of greens instead of the packages. Oops!  These babies needed to be cleaned and cut. Time to make the fancy rice. Had the onions and celery and chives. Somehow we lost the mushrooms.  Oops!  Ah well. I just added thyme and garlic powder instead. And finally the rib eye roast. 

The rib eye roast!  Brian ordered it a few weeks ago. And let me preface this with Brian can cook a roast and steaks to rival any steak house. So a rib eye roast sounded right and good. He ordered a 5 bone roast. Sounded good to me. He picks up the roast Saturday afternoon. When he returns home he calls me to the kitchen to see his roast. Whoa!!!  That thing was huge. HUGE. Oops!! Lol lol. Fred Flintnstone huge. Lol lol lol. We could have fed our entire cul de sac. Lol lol. Anyway. He started cooking it in the morning. And he had a precise method. And you know what? He cooked this huge rib eye roast to perfection. Cooked it medium and it was tasty. Yum. And we have a lot of leftover roast!  Lol. 

I did dialysis treatment Christmas Eve night. The blood leak sensor went off, but that was because I moved and pulled on the little cord. Brian reset it and we went back to sleep. We planned to do treatment Christmas night (right), but everyone was tired. We'll do it tonight. I guess if I have to do dialysis, I can do it on my terms, rather than being tethered to a location and time and rigid schedule. Dialysis is hard enough as it is. Ugh. I hate dialysis. I hate living like this. But I guess the alternative is no alternative. Lol. Well this paragraph went off the rails. I'm doing the best I can. 

Today we're finally going to see Star Wars. And Brian wants to use his Dillards card. And Shawn is giving him a mini Dillards shopping spree. Nice to have a kid who now has a few coins!  Lol. And I'll do treatment early. I am "off schedule" sort of. Deep water fitness is tomorrow at 8AM. I need to have the needles out of me for 8 hours to get into the pool. The scabs need to form so I can swim. I guess one day I'll go over bandaging and stuff after treatment. And. Shawn and I need manicures and pedicures!  

That's it for today!  Enjoy your day after Christmas. And the rest of the week!  Oh yeah. Dad went to the hot tub on Christmas Day. He just wanted y'all to know that!  ;-D

The "Christmas Eve 2017", edition.

Good Sunday morning! We're finalizing Christmas plans. Shawn arrived Tuesday evening. And it's been a blur since she arrived. Dad and Brian treated me and Shawn to lunch at the Top of the World restaurant in the Stratosphere, 101 or so stories up. We went last year and enjoyed it so it's now an annual thing. The view is spectacular and believe or not, the food is pretty good. We even splurged on desert. And of course we all shared. It's fun watching Dad digging into chocolate especially when he initially declines. 

Glen continuously surprises, entertains and impresses us. This is my 5th dog and he is smarter than our previous dogs. And that's a statement. He is a puppy though. He'll be 4 months on December 28. He gets that he needs to pee and poop outside. He also is trying to let us know he needs to go outside. He brings he's toys to is to play fetch, keep away and tug..those standard doggie games. He also will have toy in his mouth then push a ball with that toy and play fetch or chase by himself. Sometimes he will go into his crate at night by himself...putting himself to bed. And then he's figured out how to open closed doors...doors to rooms we'd like him not to enter. Like all of the bedrooms. Lol. He raises hell when dogs go by the house, or when the doorbell rings. I activated the blue tooth speaker to play some music. He really took offense at that. Lol. 

Then there's Christmas preparations. We'd initially planned to get a nice big tree. But having a puppy changed that. Even just having a dog in the past, we had to adjust. My first dog ate all the candy canes on the tree. Our last westie played with the ornaments at her level on the tree, so the bottom of tree was not decorated.   For Glen, we got a console table...which I wanted anyway and 3 foot artificial prelit tree. And instead of the lights we usually had inside on the Windows, we got a projector for outside. I actually like that. And guess who is gonna make out like a bandit tomorrow?  Lol. Everyone has bought lots of toys for him. And he'll get the rest of his vaccinations early next month, so we'll be able to take him out in public. And to a trainer!  Lol. 

On the dialysis front, I'm doing good. Feeling pretty good for the most part. I still have punky days, but it's part of the package. And every now and then I need to give Brian a break from all the work and tasks that are involved with me doing home hemodialysis.  I absolutely could not do this without him. And I am positive that by him doing this is increasing my life expectancy.  And in addition to this he pushes the hell out of me to stay active and do stuff. So yeah. He needs a break every now and then. I wish I could explain to you just how much he does. And when Shawn is here she's a huge help to all of us. And.  She and Glen are best pals. Lol. 

That's it for today. Enjoy your holiday!  

The "Finding Time", edition.

Good Thursday morning! I know I know. It's been a while since an entry. I need to find time to write. And time is an issue this time of year ... This year.  I'll start of with dialysis stuff. After Thanksgiving a component of my dialysis machine was causing problems. I'll try to explain. There are 2 parts to the machine. One is the actual dialysis machine. Now during dialysis you need a fluid called dialysate. Dialysate is the fluid that runs thru the body and removes the waste. Blood in, blood runs through the dialysate, toxins are removed and go into the dialysate and clean blood returns to the body. 

Well the machine, called Pureflow, that creates the dialysate crapped out. The dialysate is created using a premixed sack and tap water. Since the Pureflow crapped out we had to go to plan B. Dialysis patients always have a plan B, C, D and E. You know, that life threatening stuff. Anyway. The plan B is to use pre made bags of dialysate. Yes, we have some stashed away. All home hemodialysis patients do. Well there was another issue. I normally do dialysis at night 5-6 hours at night.  When I use the bags, treatment is 3-4 hours. Here's the thing. I use 7 bags of dialysate during regular treatment. Neither us nor my nurse could even contemplate how many bags I'd need for nocturnal. Lol. So I went back to short daily dialysis. Boo. Oh yeah. This includes adjusting the settings on the dialysis machine. Because it adjusts the flow and time and rate of removal. 

The company worked with Brian to fix the machine. And sending us extra bags. Yeah. This causes storage problems, but eh. Lots of packages from Fedex from the company. Finally late last week a technician came out to change out the offending part. Now I must say that the phone tech support is great. Lots of troubleshooting. So by the time the technician changed the part, the issue was solved. I finally went back to nocturnal this past Monday. I did retain more fluid than I would like during those several weeks, so now I'm removing it during treatment. It will take about a week or 2 to recover. Tell ya what though. I missed that nighttime treatment. Brian and I both disliked having to break up the day for treatment. And as an aside, Glen had to go to his crate during treatment. He is absolutely not allowed into my bedroom. Lol. Puppy needs to learn more commands!  

I also wanted to touch on another type of dialysis, peritoneal dialysis. Long time readers may recall me explaining it. Peritoneal Dialysis (PD) differs from home hemodialysis by filtering and cleaning blood within the body rather than through an outside dialyzer. With peritoneal dialysis, the patient's abdomen is filled with a special solution called dialysate that helps remove waste and extra fluids from the blood. PD requires a permanent catheter is the stomach. Strict attention to a sterile atmosphere must be maintained. The nifty thing about PD is you can do this alone, no need for a partner. And if you freak out about needles, PD is for you. But you do the PD exchanges (dialysis) several times a day. And possibly use a cycler at night. PD was not an option for me because of the catheter in the stomach. I like swim to much. And quite frankly, needles don't faze me. But it is a viable option. 

Well that's it for me for today. I'll make an effort to write another entry soon. Update on holidays, house, and Glen. And for the fun of it, it's unseasonably warm out here. Loving it. Especially after seeing the early snow in Michigan. :-(

Enjoy your day!  

These are the dialysate bags. And yes, when I travel I have to use this set up. The company will ship the bags to my hotel or location......IF I stay at least 3 days. Less time than that then I have to cart them around myself. And each box contains 2 bags. I use 7 per treatment. I can cart around a lot of boxes. :-(

The dialysis cartridge. This is where the magic (cleaning of the blood) happens.

This is the setup I use at home. The stand is the Pureflow machine. 

This a SAK which creates the dialysate from tap water. Takes 6-8 hours to fill up. 

Diagram of peritoneal dialysis. The catheter stays in the stomach and can be highly susceptible to infection if you neglect the asceptic process. 

The "The Day After....", edition.

Good Friday morning!  Sitting in the bed watching "The Highlander", while doing treatment. Need to get it out of the way. We fixed dinner yesterday for 6. Me, Brian and Daddy, of course. And Shawn flew in from Oregon. Yes. I like that my child is close enough. Whoo hoo!! Our other 2 guests are 2 close friends of ours who recently moved from Detroit to Las Vegas. We served Honey baked ham, roast turkey and smoked turkey. We cooked candied sweet potatoes, dressing with sausage, macaroni and cheese and chipotle green beans. I also had the requisite relish tray...I got that from my mom and can't seem to do away with it!  We all overdid it on the deserts. Our guests brought a delicious chocolate pie and a pound cake. We had a pumpkin pie (for dad) and a pecan pie. I also wanted a caramel cake, but I haven't been able to find anything remotely like Reen's out here. {{cry}}. We order a caramel cake from a "favorite bakery". Not only was I disappointed, I didn't like it...at all. Money spent and lesson learned. We threw it away.  Anyway. We all had a great time. The puppy was crated during dinner and never uttered a peep. Good dog!  And we all had a great time!!  So glad they are here! 

Did I mention that Shawn flew in Wednesday night?  Well she did. It's a cheap 2 hour flight from Portland. I love having her I. The same time zone and relatively close!  Anyway. Dad wanted to take me and Brian out to dinner for our anniversary and we agreed to wait until Shawn arrived. The dilemma was to figure out where we wanted to go. We finally decided on The Melting Pot. Brian Shawn and I had been in Detroit. Dad had never been. I made reservations for Friday evening and off we went. We did the full four course meal. Cheese fondue, a salad, proteins, and chocolate. Yes it was good and guess   who enjoyed it?  Why Dad did, of course!  He'd never had fondue. And he even enjoyed cooking his proteins in the broth. When the final course of chocolate came out he declined. But his granddaughter told him he should try it since he was there. And try it he did. And he loved it!  Lol. I hadn't seen my dad eat desert or chocolate since....I can't remember. We got the dark chocolate fondue and it was just delicious. Yum yum yum. 

I should mention that I started this entry Friday morning during treatment and just didn't feel like writing and now it's Sunday morning.  Eh. Treatment is pretty routine. Wednesday I had a blood pressure drop, but I was able to alert Brian  and he gave me some saline which fixed the problem. During Friday's treatment and treatment last night, Shawn was in bed with me. <3. 

So now it's Sunday morning. The kid is still asleep. Dad is at church, the puppy is chewing one of his many toys.  So many toys. Spoiled puppy!  Brian in on his iPad and I'm finishing this entry. That's pretty much it. Shawn leaves in the morning, but she's already purchased her tickets for her Christmas visit...Whoo hoo!!  It's been unseasonably warm..81 degrees on Thanksgiving. Nice. Movie day today for us. Have a great day!  

Desert!

Always moving..

The "Dialysis, A Puppy, and Thanksgiving", edition.

Good Friday morning. Would you believe Glen, the puppy, has kept us busy?  And how have we settled into the new house?  Well let's start with something totally new and unrelated. When we moved to the new house we knew we'd need to eventually replace the appliances. With the stove being replaced immediately. They old one was pretty funky and 2 burners didn't work..on a gas stove. Oh yeah. We went from an electric stove for most of our marriage to gas. Yeah we had gas in our first house. But I grew up with electric. Anyway. We got a pretty nice countertop gas stove. Then just before Labor Day we had an "incident" with the lock on the oven which killed the oven.  A built in oven and microwave. Okay. So instead of getting the microwave/oven combo, I opted for the less expensive option of a double oven and a counter top microwave. 

And oh yeah. The dishwasher sort of wobbled so that needed to be replaced. The plan was to get the dishwasher after the stove, but there was the oven "incident". I did promise the family that I'd get a dishwasher before Thanksgiving. So I looked up dishwashers and everyone has Black Sunday sales for the entire month of November. Jackpot!!  Finally made it to the store, purchased a nice reasonably priced dishwasher. It will be delivered and installed tomorrow. Yay!  So now all of my appliances are stainless steel. But what do we do with a trash compactor?  Lol. Eh. I watch too much Food Network and HGTV. 

Glen the puppy is growing. He's up to 7 pounds. He was 4.8 pounds when he arrived. He's fitting in well. He's inquisitive, has no fear. Barks at the garbage truck. Lol. He gets that puppy burst of energy and races through the house. He's learned the command "sit"!  He's starting to pee and poop outside (!)   He is still bitey and will be for a while. We are enjoying him a lot. Lots of tail wagging.  Shawn is coming for Thanksgiving and is looking forward to meeting him. 

Dialysis is going fine. However the Medicare contractors have determined that dialysis patients, all 400,000 of us, need treatment only 3 days a week, regardless of what are nephrologists prescribe. Because the contractors always know more than the doctor, who went to school for decades, who has treated us for years...punk ass bitches. Anyway. The dialysis community is angry and fired up. And concerned and frightened. There is a link that sends letters to our congress people. I posted the link and a plea for my friends to go to the link and share the on Facebook. I am so grateful for the many friends that responded.  I can't thank you enough. Much love and appreciation to you. I was also interviewed for a video to be sent to the powers Medicare contractors. The video includes patients who do home hemodialysis and we explained the benefits, especially the medical benefits  of extended treatment. If the contractors win, my treatment options will end by the beginning of the year. Ugh. There goes my life. Literally. My life span will be shortened. The short quick hard dialysis stuns organs including and especially the heart. 

Anyway. Life goes on for now. Shawn is in Oregon which makes coming here for Thanksgiving viable. As always we are excited. I also invited my friends over they just moved from Detroit. My menu is standard fare. Roast turkey, ham, and smoked turkey (yumyumyum) from Honeybaked Ham, macaroni and cheese, candied sweet potatoes, green beans with tomatoes, dressing, gravy, rolls, a relish tray (got that from my mom) and a caramel cake from Freed's Bakery.  We've been looking for a caramel cake similar to Ree's Cakes and Things and that is just impossible out here. And even though we ordered it, it's going to be different. We'll see. 

And to offset all of this,  the gym is having a potluck on Sunday. These people are insanely healthy. They eat ....things. Lol. So I'm going to make the vegetarian version of green beans and jalapeños. Keeps Dad busy snapping green beans. Lol. Ezekiel bread. Ugh. 

Well that's it for today.  We finally turned the heat on..but only because it gets chilly in the evening. Stay warm and enjoy your weekend!!!  Oh yeah. If you'd like the link to send your concerns to the congress people about the proposed cutting of dialysis treatment time, let me know. 

Glen. Wondering what he can get into. 

Glen inviting me to play a game of tug. 

The "An Average of 5 Years", edition.

Good Thursday morning. Today is November 2, 2017. Five years ago today I was told my kidneys had failed. Five years ago today I started dialysis. Five years ago today I was dying. My nephrologist told me I was 2 hours away from dying. I felt like it. I couldn't move. And finally I couldn't breathe. Brian had to call 911 for EMS. The techs gave me oxygen, wrapped me in a blanket, put me on a gurney and carted me out of the front door of my house. My neighbors were outside looking concerned .. Because that's what you do when EMS comes to your neighborhood. 

I arrived at the emergency area of the hospital and was processed pretty quickly. While waiting for the results of test, I had one more episode of not being able to breathe. Pulmonary edema, scary stuff. The best way I can try to describe it is no matter how deep you gasp, no air is getting into your lungs. I imagine it's what a fish feels like out of water. Even now, five years later, it's frightening to think about. I was eventually told that my kidneys had failed and I would be starting dialysis immediately. Well, now I knew why I was feeling so bad. And there will a procedure to make me feel better. 

Of course I remember very little after that. I was taken to the intensive care unit (ICU). The last thing I remember was nurses taking off my clothes. When I wake up, I'm in a room with a zillion monitors. I had a blood pressure cuff on my arm taking my bp at regular intervals. I had an IV on the other arm. I have a Foley catheter (ugh). And I had a new catheter contraption on the right side of my groin. Apparently that was the emergency catheter for emergency dialysis. I had had a dialysis treatment....that I have no memory of. Now that's being very ill. 

I spent Friday, Saturday and Sunday in ICU. I was feeling better after the initial treatments, but I had a long way to go. I recall waking up at night being incredibly thirsty, but i was to weak to reach the button to call the nurse (looking back 5 years later, why was the button so far out of my reach???).  My voice was to weak to yell, plus my throat was parched, so I could barely whisper.  Picture me feebly trying to holler "help nurse".    During the day I had a dedicated nurse, but at night we all shared a nurse, I guess. The dialysis guy brough dialysis to me. And I had a physical therapist come to help me walk again. I had to use a walker. For the record I used the walker for the next 2 months...then I moved to a cane. 

The following Monday I was moved to a regular room. I stayed in the hospital until Friday. A full week. There was a distinct difference on how I felt from when I was admitted to when I was discharged. A world of difference. I felt much better, but I was nowhere near 100%. And I clearly didn't understand how much my life was going to change. 

So here I am, five years later. I never thought kidney failure was a death sentence. I thought it was more like an inconvenience, but something I needed to adjust to. When I was doing dialysis in the centers I experienced death at an astounding scale. The turnover in center due to deaths was startling at first, then it just made me sad. Now that being said, there were others who had been there for years. There was even a mother son team doing dialysis. But why am I still soldiering on when so many have fallen? 

I know attitude has a lot to do with it. Being compliant on diet and lifestyle has a lot to do with it. And how I dialyze has a whole lot to do with it. Dialysis should done like a beef brisket, low and slow. Hahahahaha.  But it's true. In center, because the centers are a dialysis assembly line..move 'em in and get 'em out...we gotta make money..quantity over quality...treatment is high and fast. Do the treatment on the patients as quickly as possible. Well guess how that affects the heart?  Taking off too much fluid. Cramps, dangerous drops in blood pressure, passing out, nausea,....death.  This.  This is what gives the 5 year average life expectancy.  But there is more. 

An informed patient can counter this, even while doing incenter dialysis. The patient needs to know the settings that work for them. Keep track of their dry weight and know how much fluid can safely be removed during treatment. Incenter my upper limit of fluid removal was 2.5 kilograms. And I knew this because a wonderful tech actually tracked when I would crash ( dramatic and quick drop in blood pressure from too much fluid being removed). Patients need to know and question each med that is being injected into them and what meds are being described. And patients need to know that there are alternatives to doing dialysis in a dialysis center. 

You know that I transitioned to home hemodialysis a few years ago and the moved on to even longer slower treatment by doing it while I am asleep. But you know what?  I encounter medical professionals who are surprised I do hemodialysis at home...that I stick my own needles. Some don't believe me. Eh. Dicks. Anyway. 

Five years average. Well I'm passing on that. Still too much going on. I need to make my new house look like I had the Property Brothers over here (lol lol). And I have a new puppy that I need to get to dogdom so we can cuddle on the bed. Hell, he's not allowed in the bedroom yet. I don't see that for a few years, so there's that. And spending time with my fabulous daughter!!  Making it my 50 year anniversary.  Plus a few more trips. And perhaps a kidney transplant. Remember what I use to say when I first started the blog? "I got thangs to do". And that hasn't changed!  

So yeah. I made it to five years. That's nice, but can I do the same thing twice? (Who did I just paraphrase?  Hehe). I'm going for it!  Yeah, I get tired and yeah  bullshit things happen. But I'm good. Stuff always happens. So yeah. I'm here for a while longer. You can't rid rid of me yet!!

Bonus photo of Glen

The "Nearing 5 Years", edition.

Good Monday morning!  I know that 5 years ago this time I was pretty sure I was dying. And I really was dying. I just didn't know what was causing it. I felt worse than I ever had. Well. I'll return to that day on the 5th anniversary, November 2, 2012. For now, I'll talk about now!  

I just had to get a dog. And I just had to get a West Highland White Terrier. And I got it. I got the dog Wednesday night. So how have the past few days been?  We're delighted to have a puppy in the house. We're all adjusting, including the puppy, Glen. The first night we correctly anticipated the crying. We put Glen's crate in the breakfast room, the room furthest from the bedrooms. We could still hear the barking, but it was muted. As a matter of fact, the crying finally ended last night. At least it subsided early on and started up again when Glen realized we're we awake. 

The house sort of worked our favor for a puppy. We thought. We have a sunken living room, one step. Based on our previous westie puppy I thought we'd have a week before Glen could navigate the step. Heh. We had about 5 minutes before he navigated the step. At least we closed the doors to all the bedrooms and bathrooms. We spent time in the den and the den has a door we could close so we could keep an eye on him. Well. Saturday evening I left the door open to my bedroom. Guess who found his way all the way there?  Lol. Glen also found Grampy's room with Grampy in it this morning. Oh boy. 

The good news is Glen gives us cues when he needs to go outside. Yay! Smart puppy!  We went to PetSmart to get a crate and other supplies (toys). They had a buy $20 worth of toys, get a free toy box. Yes we got the toy box. Put the toys in the toy box. Glen got in the toy box. As a matter of fact he goes and plays with the toys in the toy box. Lol.  Yeah, we're enjoying the puppy. He follows us around. He greets us when we walk into the room. And he's just too cute. He barked at the garbage man today and fussed at the FedEx guy Friday. And yes, as soon as he has had his vaccinations, we're taking him to a trainer. One day he'll learn his name is Glen! 

Yesterday we tried a new Restaurant for our Sunday Brunch, Lucilles Smokehouse. So.  Much.  Food. I got baby back ribs, Dad got St Louis Ribs and Brian got brontosaurus ..er ..beef ribs. The ribs were pretty good. And we have enough left overs that we're having them for dinner tonight. My sides were meh. But we'll be back and I'll try other sides...and maybe the catfish...or the Nashville fried chicken...

Dialysis is going fine. My venous access is being difficult, but it goes through cycles. And by difficult I mean that sometime it takes a while for the needle to find the hole. Now before you freak out, the hole is a buttonhole.  The buttonhole is very much like a pierced earring hole. You know sometimes you can't hit the spot. That's all that's happening with my venous buttonhole. I'm really liking doing treatment at night. It gives me back my days. Oh yeah. The puppy is crated for the night when we start treatment. 

Nice weather for Halloween. I have decorations and candy. Hopefully we'll get some kids. At the very least, there is a grandchild in our cul de sac. I'll let the grandparents know she can collect from us. That's it for today. I'm able to write right now because Glen is taking a nap. Yay!  Lol. I think maybe I'll take a nap now, too!  Enjoy your day! 

The "Glen", edition.

Good Friday morning!  I am so liking this weather. Highs still in the low to mid 80s. Oh yeah. Today is Nevada Day. "Nevada Day commemorates the admission of the state of Nevada into the union on October 31, 1864."  It's a state holiday so some banks are open. Most government offices are closed as are the schools. And the pool...no deep water fitness today. And Brian's master gardening class is off today. However, our trainer wants to meet with us today. Boo. 

So. We moved from the condo to the townhouse in July. We started that process in April. One of the reasons we were moving is because we had outgrown the condo. 2 bedrooms, 2 baths.  It was big enough for Mom and Dad. And Brian and I moved in, we got rid of some furniture and made it livable for 3 people. But after a while we just needed a little more room. There was, however another reason. I wanted a dog. Or at least a cat. The condo does not allow pets. And it's even iffy on service animals. And yes, some of the people had secret cats. Lol. But we were not even sure if we had room for a litter box. So it was time to move. 

We were looking for 3 bedrooms, 2 bathrooms, at least 1500 square feet, gated community, pool, hot tub, allow pets, and age restricted. Whew. What a list. And yes, I even had a location preference. We needed to be within a reasonable distance to our deep water fitness pools...in Henderson. With the assistance of our fabulous real state agent, we found a place that fulfilled every requirement..even exceeded some...2.5 bathrooms and over 2000 square feet (!).... except the age restriction. But!  The average age of the residents is about 45. I ve seen very few children here. As a matter of fact I've seen more dogs ans than kids. 

So we moved in July. And we settled in. My goal was to get a dog by October. Ah. But I was picky. I wanted a West Highland White Terrier, Westie for short. I started searching the AKC marketplace for Westies. None in the Las Vegas area. The closest was 3 hours away in California, but the breeder had no puppies. The next closet would be an excursion into California. Eh. So I would look periodically. One day the 3 hour drive breeder had puppies again. However when I called, all the puppies had already been reserved. Boo. The next closest breeder was just over the Utah state line in Grand Junction , Colorado. 

The breeder had available puppies and held one for me. Brian and I were going to drive and pick up the puppy. But it did seem daunting. An 8 hour drive, spend the night and drive back with a puppy..for 8 hours. In the meantime, the breeder would get confused by my area code...still Michigan. She ends up sending me a text about flying the puppy to Michigan. Hey now!  How about flying the puppy to Las Vegas?  Jackpot!!  Was it risky?  Well risk was dealing with a breed long distance.. But the breeder is registered with the American Kennel Club (AKC). I'm good with that. And shipping via Delta is a very reasonable flat rate. 

Wednesday evening we drove to the Delta cargo location and picked up the puppy. The crate was so small. Which meant the puppy was so small. The puppy was alert and when I stuck my finger in the  crate and puppy licked my finger. Love at first lick!!  We got him home and told him his name is Glen. Pretty sure he paid absolutley no attention to that as he explored his new surroundings. 

How did we come up with Glen?  I asked Shawn and Brian what should we name the new puppy. They agreed on Barky McBarkface. :-/  No. I then gave them four options. They countered with Iggy and Barky McBarkface...neither of which was one of the four options. They then came back with Glen. What were the options?  Glen, Ross, Scott and Stewart. Glen was the winner. So now Glen just has to learn his name. Lol. 

The first 24 hours has been busy. Puppy = Baby. We've been to the vet. Glen explores his new house. He runs full tilt around his confined area. He cries when he wants to got the bathroom. Our cue to take him outside. At the vet, while he was in his crate, a large pitbull comes out and notices the resident cat, and the pit starts to bark. The cat is nonplussed. Glen, however, is matching the pit bark for bark....in the high pitched puppy bark and growls. ROFLMAO. Oh yeah, Glen is healthy and full of personality. And all of 5 pounds. Training will be fun. And yes, we have toys, but we need more!  Teething ahoy!  Oh yeah..frozen carrots. Yes,  all three of us are delighted to have a puppy. 

On the dialysis front, all is well. Numbers are good. I got my flu shot. And I'm pretty sure having a dog (puppy) improves the quality of life for 3 of us. Dad is enjoying the puppy too....as his granddad!  Lol. 

That's it for today. Enjoy your day!!

He has a bed...