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..