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.