The "I Enjoyed Sunday Afternoon!", edition.

Good Friday morning. I took a break yesterday because I had the sleep study Wednesday night through early Thursday morning. That was a waste of time. Enough of that. I left off with the end of the HDU (Home Dialyzors United) conference and having to get across town for The Society, Inc. Little Black Dress event which is the student showcase, my next event. The student showcase started at 1:30. We were asked to be there at 11:00, but I was not able to get there until the end of the HDU conference. The conference ended and we had to wait to get our car out of valet. Of course every single person was checking out of Circus Circus at the same time so the wait for the car was longer than I would have liked. We finally made it to The Orleans around 12:30. The small but mighty membership of The Society, Inc.  had set up the ballroom. It looked wonderful in its peaches and cream glory!  

Part of the luncheon included door prizes and raffles(?)...Let me backtrack. The event is called The Little Black Dress event. Center pieces on the tables are  accessories for little black dresses. Raffle tickets are sold and people check out the items on the tables and if they want a chance at the centerpiece, they drop a ticket in a goblet..and a winning ticket will be pulled to win the accessory. What were the accessories?  The accessories included jewelry, fascinators, shoes, cuff links (for the fellas) and even a wine basket. 

The luncheon is a fundraiser for scholarships for students interested in the arts in the Las Vegas area..painting, dancing, musicians, etc. The event also showcases the talents of the students. When we arrived, a string orchestra serenaded us. They were fantastic!!!  During the meal we were entertained with Mexican folklore dancers. And the final group included a singer (so good she brought us to tears), a young lady whose poetry was quite moving and finally a dance troop.  And artwork was on display from student artists. All of the young people were very talented and a joy to watch. So this is where I insert that I was unable to attend last year because I was so sick. But I am delighted that I was able to attend this year. 

The Society also awards people who assist and encourage arts for students in the community. One of the recipients this year was Antonio Fargas. Yes, that Anonio Fargas.  He is actively involved with the center and with  the kids that sang and danced and performed the poetry. You could see how proud and moved he was when the kids performed. 

I stayed to the very end, but I was tired. I thought I was faking it, but my Society members saw right through me. Lol. I need to up my acting skills. It had been a long but exciting weekend. I had been dreading it and looking forward to it at the same time. I wasn't sure I'd survive. But survive I did!  No, I don't need another weekend like that for a while, but it was enjoyable, informative and satisfying!  And I walked and walked through ginormous casinos and meeting areas!!  

That's it for today. Oh yeah. I fell and scraped the hell out of my knee. I went to urgent care. All is well, but swimming is out for a few days. The scraped knee is damn impressive. I never had a scrape that impressive when I was a kid. Go figure. Have a wonderful weekend!!!

Photos from the Little Black Dress event 

The "The Day I Was Dreading", edition.

Good Wednesday morning!  Since I've had to stop the medication that controls my parathyroid gland, my body has been hurting. Back, knees, ankles.  I'll be having surgery soon to remove the parathyroid.   However, I still have been able to go swimming and to my trainer. As a matter of fact I felt looser and better after my visit with my trainer. I'm strutting out of the gym commenting on how much better I feel ..,and then Bam! my ankle twists and I dive to the floor scraping my right knee as I fall. It was spectacular!!  As is the scraped knee. It rivals any scraped knee I had as a kid. Lol. So yeah. The ankle is fine. The good news is I still know how to fall. 

Ok. So Sunday. I have the last day of the Home Dialyzors United conference and the student showcase luncheon. Let's do this!  I have to dress for the luncheon, so I'm looking fancy. Yes, I can be fancy if I need to!  We arrive around 9 AM at Circus Circus. We're offered a pretty nice breakfast buffet. Eat, then the travel panel starts. HDU and NxStage are sponsoring an Alaskan cruise in June. We're considering it. People also talked about trips to Hawaii and to Europe. We have limitations because we have have supplies shipped. Some countries have regulations about shipping medical equipment. In addition there should be a NxStage partner in that country if we have an issue with our machines. People also shared their experiences.  We also met the NxStage travel/representative/expediter. Got her card!

Afterwards we did "speed dating" with the conference subject matter experts. Each table spent ten minutes with each expert so we got even more information in an intimate setting. The conference ended with some drawings. Brian won a cookbook. I won a kidney necklace!  The grand prize was a $500 travel reimbursement. Afterwards we hugged and said our goodbyes. Brian and I enjoyed the conference immensely. It was beyond great meeting and bring with people who are sharing our experience. We look forward to staying in touch with our new friends. I forgot to mention that one of the conference participants created a kidney diet/food tracker app that tracks our meal. Because you know, we have certain requirements and certain restrictions. I actually saw the app and signed up as most of us did, to be beta testers.  

Well that's it for today. Tomorrow I'll go over the student showcase!  Tonight I'll be tested for sleep apnea. WTH?  On this one I think my primary care physician is doing this because it's covered by my insurance. I'm confident that I don't have sleep apnea. Anyway. Have a wonderful day. I think we'll look for apple cider today!!  

The "A Conference for Home Dialysis Users", edition.

Good Tuesday morning!  A conference for home dialysis patients. How specific is that?  Hey. We all belong to subsets of subsets!  But it's not like I know or even encounter people on home dialysis on a daily basis. Let me put this in perspective. It's true that when Brian and I go to the dialysis center we see other patients and nurses. I decided to ask about it. The majority of people on home hemodialysis are people who do the peritoneal method..  You know the tube in the stomach modality. And that's fine. Some people would rather not use needles, some people don't have a care partner..or any other number reasons. Anyway. I asked how many home hemodialysis (needle users) nurses are there in the area. There are three. Three nurses. Three nurses for the entirety of southern Nevada (!) Whoa!!!  Well. How many home hemodialysis patients are there in southern Nevada?  25. Whoa!!  Only 25 of us. In southern Nevada. Nevada is a large state. My nurses said that they periodically have to travel 4 hours to visit patients. Whoa!!!  So I've put this in perspective for you. 

People doing home hemodialysis are a clear minority. And we don't have to tell you it's a good modality. Studies have shown that it's the best modality for dialysis. Best survival rates. And there are other benefits. So..even when I bitch and moan wail and gnash my teeth, that's just a function of living with failed kidneys. I decided that what I wanted the best treatment available to me. So. Meeting others who chose home hemodialysis was a great experience. Meeting meeting people with a shared experience. And of course even though we are all on home hemodialysis, our  shared experiences are also different.

So. We arrive back at Circus Circus around 8 AM Saturday. Program starts at 8:30. Topics included nocturnal dialysis, an iPad app to collect data during treatment...we currently use flow sheets to collect data.. Such as pre and post weight, temperature, sitting and standing blood pressures, how much fluid to remove, arterial and venous readings during treatment...and even some more info. Another session included additional items needed for nocturnal dialysis, such as a heparin pump...to decrease blood clotting while asleep and a sensor to detect blood leaks. And a discussion on travel. 

Lunch was provided. And during lunch several awards were given for topics specific to home hemodialysis. The keynote speaker was Dr. Shuvo Roy, from University of California San Fransisco, whom I mentioned yesterday. He introduced himself to me as a scientist. I recalled thinking no one ever introduced themselves to me as a scientist. Lol. But he was. He and his team are developing an implanting artificial kidney. And that's what he talked about.  He noted that technology had allowed miniaturation of medical devices. Think pacemakers.  But that the field of nephrology seemed to be stuck in the dark ages. There is no reason why dialysis machines are still looking pretty much like they did 30 years ago. He explained the biology of how the implantable kidneys would work. And before you get too excited, it's still a ways away. But it was exciting to hear about!  

We broke after lunch. One of the sponsor companies, NxStage, has arranged several activities for conference attendees such as tickets for Blue Man Group, Penn and Teller or a night tour on the Big Bus. And of course, most people would have had to do treatment prior to going to the shows that evening. I, on the other had, had to go assist with some tasks for the showcase event on Sunday. To say I was tired by the time I got home was an understatement. Anyway. 

That's it for today. I know I haven't mentioned the people I met and that was the best part. I'll go into that tomorrow..I think I'll be up to writing tomorrow. But just know that I really enjoyed the conference and learning so much. Take care and enjoy your day!  

https://pharm.ucsf.edu/kidney

The "Surviving the Weekend", edition.

Good Monday morning!  Just got back from deep water fitness. We've been away for a week. We had an appointment last Monday and then I spent the rest of the week at the dialysis center. Friday was my last day there.  So yeah. No deep water fitness last week. Anyway , I finished treatment, came home and rested. Then Brian and I headed to Circus Circus for the first day of the Home Dialyzors United conference. 

What is Home Dialyzors United?  Well it initially was a Facebook group I found for.. You guessed it..people who dialyzed at home.  "Home Dialyzors United, a 501(c)(3) non-profit patient organization, is the only dialysis patient organization dedicated to the home dialysis community. Our mission is:

To inspire, inform, and advocate for an extraordinary quality of life for the home dialyzor community." Its an informative community for those of us who dialyze at home, sharing information and issues with our machines, treatment, travel...and the list can go on. 

It was announced that this year's conference was being held in Las Vegas. Well, that was clearly a sign that we should attend. Lol. I registered me and Brian (care partner) and then we waited. And then I realized another organization I belong to, The Society, Inc was having its signature event that same weekend. What are the odds that everything happens at the same time?  Actually the odds are quite low. Lol lol. And again, all of this follows an intense week of treatment for me. Yay?  So as much as I was looking forward to the week, I was also dreading it. Wondering if I could last. Did I have the stamina to do it all. 

So back to Friday. I took a nap, but I was still tired. And I knew I'd be walking a nice long distance in Circus Circus to get to wherever the meeting rooms were. I did look up the map to get an idea of where the rooms were located. And know which valet parking area to go to. We got there, got directions to the meeting area. Did I mention Circus Circus has a Fright Dome Haunted house for Halloween and that was going on?  And that we had to walk past that line? And that Circus Circus is perpetually crowded and busy...like a circus?  Bwhahah. I digress.  I finally made it to the meeting rooms. I should add that the following days, the distance didn't seem as long. Lol. 

Friday was registration and meet and greet. I got my name tag and goodie bag, headed into the room and promptly sat down. I was winded. :-/  But I immediately met someone who I'd "met" online and we proceeded to have a friendly animated conversation. It was an absolute delight to talk to other home dialysis users and Brian got the opportunity to talk to other care partners! Win win for all!  

They had food out. I chuckled that some of the food wasn't  really dialysis approved...but being on home dialysis means are diets are nowhere as restricted as incenter.  We ate!  We met and talked with more people. I talked with Dr. Shuvo Roy, who is part of a team developing an artificial kidney (!)....I didn't know it at the time. We finally left around 7 PM. It had been a long day. And we needed to be back the next day at 8 AM. That being said, we didn't have the jet lag like the folks from the east coast..New York, Maryland, Florida, Michigan. And we didn't have to dialyze since I'd done it that morning. However, some of the attendees did need to dialyze.  

We got home, tired, but excited. It looked like this was going to be an informative conference. We were looking forward to it!  That's it for today. My body has to recover from the weekend and deep water fitness. More to follow tomorrow. And I suppose the entire blog is "on the dialysis front" today. Have a great day!  

The "Keep Going", edition.

Good Thursday morning. iPad shuffled to Heatwave, "All You Do is Diall", Rod Temperton.  Back in the day when we studied album covers, you knew Rod Temperton and Heatwave were synonymous. Wonderful writer. He'll be missed. Third day in with training on inserting sharp needles. Of course there was an issue. Of course. My plan was to write about how it's going good and how well I felt this morning. Well dialysis always has surprises for you. Bleah. 

I'm getting fussed over and loved by my nurses.  Who by the way are the only 2 of 3 nurses in southern Nevada....get that. The entirety of the southern part of the state. ...the only 2 who train  home hemo dialysis. Some of their patients are up to 4 hours away. Yikes.  Anyway. I successfully stick myself.  We discuss if I should come on Friday and bam. The machine dings.  Arterial flow issues.  The access expert guy comes in to work the needles. Long story short, it takes 10 minutes to fix. This is while I got half my blood in the machine. I get dizzy...the cue that I'm getting ready to pass out..wth??...and have to recline. Blood pressure drop and literally a loss of blood.....because treatment had started and well, blood was in the machine...hence loss of blood.  Well it wasn't lost, we knew where the blood was, it just wasn't in me. Heh. My nurse ended up returning my blood back. It's impressive how I can from passing out to feeling fine within seconds.  So anyway I'll be back tomorrow. Michael Jackson, "Butterflies".  And yes, now treatment is going fine now.  

I was also going write about our car. We got a fancy Ford Escape in May. Way more junk and features than we needed but they gave us an offer we couldn't refuse. We really just needed a vehicle to transport the "portable" dialysis machine. Anyway. The car beeps when another vehicle is too close....which is often. The car bitches and whines if a semi truck pulls up next to us. Today a motorcycle raced by us and the car complained. I find myself trying to reassure the car, "it's ok baby..the bad vehicle is gone now".  Lol.

War , "All Day Music". Lol. I wish I could carry a tune. With my headphones on I harmonize with the best of them.  So I'm doing treatment and all is well. Got an home hemo dialysis convention this weekend. And Sunday I have a fancy luncheon. I'll be glad when this weekend is over. 

That's it for today. I'll leave you with the Dramatics, "Door to Your Heart". It's fall out here highs mid 80s. Loving it out here.  And my friends on the east coast stay safe.  

The "The Next Day", edition.

Good Tuesday morning!  iPad shuffled to Michael Jackson, " Butterflies". Aha taking you back to my old format. There's a reason for that. I am in center doing treatment. But there's a big but (teehee - big but). My nephrologist and vascular surgeon insist I change my method of needle insertion. I currently use buttonholes to insert my needles....buttonholes are like pierced earring holes. The prevailing thought now is that buttonholes are subject to more infections. So I am now at the center to learn how to stick myself with "sharp" needles...like IV needles. My nurse called yesterday and pretty much insisted I come in today to start training.  So here we are. And yes I stuck my self with sharp needles this morning. There is a technique and I'll be here a few days. So that being said, I packed my dialysis bag. 

Whodini, "Five Minutes of Funk". So what's in my dialysis bag?  Well remember we get cold doing treatment. Blood is pulled out of the body, cleaned and then returned to the body but it's the returning of the blood that's cold. And it's cold from the inside. Brrrrrr.  I have a hat, socks and a blanket. Yes, the temp of the returning blood can be adjusted, but the staff prefers it to be on the cool side. If it's warm then the blood pressure rises. Consider that your fun fact for the day. Yikes. Chair dancing!  And my iPad and headphones are packed.  Yeah. I have the TV on, but I'm preferring the music today. It's a treat!  

So. Yeah. I'm in a better mood today. Roy Ayers, "You Send Me". <3.  Violins!  I get lost in this song.  I digress. So much love and thanks for my very supportive family and friends. Oh yeah. My nurse told me that nocturnal home hemo is available.  I get to be the Guinea pig!  Lol. It's good. It's even a better method of dialysis. Nocturnal treatment is done at night while I'm asleep. And it's every other day.  And even more flexible. And!  It's the next best thing to a transplant....in terms of clearance of fluid and toxins.  (I wonder if my care team from Detroit saw this in my future). So I'm there. I did ask about it a few months ago. I'm glad my clinic listened and is now offering it. Now if I can get them to start using the iPad  to take and transmit vitals. Bluetooth and all that. One step at a time!!!!  I bitch and moan and cry and complain and wail and gnash my teeth and here I am trying out new and better treatment options. Heh. If my glass gets empty I seem to get it back to half full. 

Ok.  The downside of the training this week is we'll miss our deep water fitness class and our workout with the trainer. The good news is they understand.  But yeah. Today is better. I was really despondent about the missing treatment thing last week and weekend. But it is always something. I have a pity party then have to remember that it could be worse. All things considered, I'm not doing too bad. But it's scary. So scary. You know if it were just dying was it that would be fine. Justin Timberlake, "Rock Your Body".  Buts it's the associated complications. That's scary. I guess I just have to do what I do. 

And finally...Brian is a trooper.  He's there. He's so there for me. Run DMC, "Walk This Way".  I can't even describe my love for him. I'm thinking he might love me a little!  Lol. That's it for today. I'm smiling. And enjoying the music. Have a wonderful day. I'll leave you with this song. Santana and Rob Thomas, "Smooth".       :-)

The "I'm Really Tired of This", edition.

I'd like to say good Monday morning, but it isn't and I can't. I haven't had a good treatment run since Wednesday.  I had the sucessful angioplasty and fistulagram on Thursday...which meant obviously no treatment Thursday. Friday's treatment was great...until the last 45 minutes. Well, at least I was able to remove the amount of fluid, but I lost the last 45 minutes because of system alarms and the need to get off of the machine. Somewhere there was air in the lines which precipitates the need to get off now..do not pass go, do not collect $200. Because the last thing we want is air running into my veins. That would be bad.  Very bad. I lost the last 45 minutes of toxin removal. Yay. Poisons running through my veins. Good times!  

Saturday was an off day. We thought that would be fine as I had a busy day. And I actually made it through. Hooray for increased stamina!!!  Early weekly Saturday morning casino run with Dad. Then sorority meeting, the watercolor class. Then I came home and crashed. Lol. But in a good way. Brian made sloppy joes, we ate and I fell asleep. Sunday brunch was Chinese food. And then come home and do treatment. Well an hour into the treatment the alarms on the machine went off. Brian called the help line. They told him to discontinue treatment now. :-/  I am not a happy person. We think we have a defective cartridge. A bad lot of cartridges  if you will. We're going to try again this morning, opening a new box of cartridges and checking the lot number. We were also instructed to call the help line before we start for a walk through and we'll be notifying by nurses. .. If there is still an issue I'll need to go to the center for treatment. *Sigh. 

So yeah. I'm tired of this. I'm tired of living like this. I'm at the whim of pieces of plastic. And quality control. I'm frustrated as hell. This isn't living. This is surviving. Barely. And what the hell for?  Geez. I'm tired of this. I'm sooo tired of end stage renal disease. I'm tired of dialysis. I tired of waiting on a cadaver kidney that may never become available. I can't even volunteer for stuff in the sorority because I'm pretty sure my availability will suck. Because of this I am not dependable. At all. Traveling requires major planning and logistics. I have no idea how I'm going to feel one day to next. There is no cure. More often than not I hope to not wake up in the morning. I'm tired of being strong. I'm so sorry Brian has been dragged into this nightmare. I'm so glad Shawn is across the country so she doesn't have to deal with this. Just ugh. 

Yeah I'm in the rabbit hole. And I'm fine with it. I see no light at the end of the tunnel. And that's life..or whatever is left of my life. Oh yeah. Because of the less than desirable availability of treatments, I am now retaining fluid. I'm sure sure the pulmonary edema will come back if I can't get this taken care of.  So there you have it. My life is precarious as hell. 

Well. We'll see if I can get treatment today. Hopefully you'll have a much better day.