Friday, March 31, 2017

The "I Have a Kidney Care Team", edition.

Good Friday morning!  Thanks to Jan I'm listening to Average White Band, "A Love of Your Own". This rushes me back to U-Mich. lol. Ok. A dialysis patient has a team of health care professionals. My first day at the dialysis center in Detroit..when everything was new and frightening...I was introduced to a dialysis tech, a dialysis nurse and a social worker. By the end of the week I'd met with the dietician and my nephrologist.  I eventually learned that my center had a plethora of staff. I also learned that this was  not the norm. I got spoiled and my expectations were wildly out of line. 

I can remember my first day. Actually my first several days. I was cranky. It was understandable. I wasn't happy. Anyway. I remember my first dialysis tech. I also remember I didn't see her  again for almost a year. I think they have rotating dialysis techs. iPad on AWF, "If I Ever Lose This Heaven". But don't worry. The center also had a regular staff. I remember the RN. And I find out later she is the sorority sister of one of my friends from high school. Imagine that. She was all business. I also met my social worker that first day. She brought me a duffle bag with the name of the center on it along with some stuff in it, including a blanket. I used that blanket the first day. I got colder than I'd ever been..cold from the inside. Brrrr. Dialysis patients bring a bag with us to treatment. Mine has a blanket, my iPad, headphones and snacks. And phone. We all have blankets. 

Later that week I met with a dietician. Kashif, "Help Yourself to My Love". Yep I cranked up the volume. I digress. She was not my assigned dietician, but she gave me a cheat sheet and a booklet on what I could eat. And finally my nephrologist came in. The nephrologist I had in the hospital. After a week or so I was assigned a chair and time at the dialysis center. At that time I got a (more or less) permanent dialysis tech and nurse. With the exception of the nephrologist and dietician, I had access to my team every single day. The nephrologist and dietician I saw officially saw once a week. The dietician however, was there more than once a week, but she had several clients. But if I needed to talk with her, I could. And if something came up, the staff could contact the nephrologist and he'd respond immediately. 

So. The dialysis center  had 7 modules with 6 patients in each module. Each module had at least one permanent technician and a roving tech. Except when the "shift change" occurred. Rachelle Farrell, "With Open Arms". This song showcases the hell out her voice. I digress. There was a head nurse, a charge nurse and at least 3-5 other nurses on duty. All RNs. No nonsense nurses. Lol. So let's review. I had a nephrologist, a social worker, a dietician, several nurses, 2-3 dialysis techs. Whew. That's a team!!!

When I moved to Las Vegas. My dialysis center was a HUGE disappointment. A nephrologist I may see once a month, if he didn't send his physician assistants. A dietician that was assigned to several dialysis centers in Las Vegas, so we saw her once a month...maybe.  But she quit my second week there. I'm pretty sure I didn't see another dietician for another 2 months. 2 social workers spread around several dialysis centers. And yes one of them quit. Roy Ayers, "You Send Me". Close your eyes and float in the music! I will say that the dietician and social worker were compassionate and worked with us, but they were overworked. And I must add that thanks to the social worker I got signed up for home hemodialysis. So there's that. But overall I was underwhelmed with the patient support here. And it is a function of a corporate owned dialysis business...yes business. And it was also a function of the center itself. My center in Detroit was privately owned and non-profit..associated with Henry Ford Health Care Systems. 

So now I'm on home hemodialysis, I have a much more personable and personal team. I have a great nephrologist who listens. I have 2 (!) nurses, a dietician and a social worker. And a primary care physician (PCP). Now there are a lot of tentacles here. My nephrologist and PCP need to communicate with each other. And we're getting there. As an aside my medical group is Health Care Partners  and they are a division of Davita..which is my dialysis provider. Yet they don't share patient data. WTF?  Lol. Soon I guess. Because for damn sure every time I go to a Health Care Professionals office they have access  to all my medical records.  Lol. Brownstone, "Grapevyne". Talk about some voices. Yeah! 

I also a cardiologist because dialysis patients are prone to heart issues. Dialysis shocks the heart. I have a dermatologist because of the porphyria cutanea tarda (sign). And now let's add an Endocrinologist for parathyroid removal. Have we tallied the number of people of my team?  2 nurses, 1 nephrologist, 1 social worker, 1 dietician, 1 PCP, 1 cardiologist, 1 endocrinologist. 8 people. And we're not counting eye doctor and dentist. Lol. And my insurance company has assigned me a nurse to contact (bother me) me every quarter. Sigh. 

The Dramatics, "Fall in Love, Lady Love". So what prompted me to write about my dialysis care team? One of the social workers from Defroit. The lead social worker from the center was also my sorority sister. I don't recall how she found out I was an AKA. And I know she was surprised to see me show up for the National Kidney Foundation Zoo Walk. But anyway. She is a fabulous social worker. Once I moved to Las Vegas, we stayed in touch, as well as the RN from Detroit.  I gave a shout out to the social worker on the other day. She thanked me and reminded me that March was National Social Workers Month. I didn't know much about social workers, but in the dialysis world a good social worker can make life much more bearable and easy. I've read about nightmarish ones, but I've been fortunate to have really good ones. Great one , really. And my Soror, social worker set the bar for me. Thanks again AJ. Happy National Social Workers month!!

Well that's it for today. Signing off with Tavares, "Check It Out". I remember just staring at their album with those good looking men with the tight Afros!  And the voices and harmonies. *swoon*. (And Brian sings this to me). The winds were out of control yesterday. 75 mph winds!!!  Semi trucks blown over. Notice I said truckS, plural. A entire half mile of electric poles knocked over and snapped like twigs. Yes people were in cars when this happened. They had to be rescued. And of course was that was right by the strip. Still windy today, but not quite as....robust!  

Have a great day and wonderful weekend


Saturday, March 25, 2017

The "The Tools of the Trade", edition.

Good Saturday morning. Well, it's been about a week since we started the nocturnal home hemodialysis. The excellent news is, is that the process is similar to regular home hemodialysis. The differences are the cartridge and the blood leak sensor. These differences are minor. Really minor. The change is us. Lol. Our schedule used to be eat dinner around 5:00 PM, take a break, then start prepping around 6:30 and I'm on the machine by 7:30. Treatment lasted about 3.5 hours. Done around 11:00, finish up, clean up then be in bed by midnight.  We did this 5 days a week. Never, ever missing 2 consecutive days. Our schedules revolved around this. If there was an event in the evening we wanted to attend or travel, we'd adjust the schedule. Sometimes adjusting the days. Or adjusting the time of treatment. 

Now with nocturnal we make sure I'm on the machine by midnight. Why midnight?  My time on the machine is now 5 hours. Yes. I sleep 5 hours a night. Most nights. I know. You want to know why I'd even want to wake up so early. The quick answer is, is that we're early risers. And our water fitness class starts at 8:00...way in the other side of town. We leave at 7:00 to get there in time to change clothes and whatnot. Anyway. The alarm goes off 5 hours after we start..sometime between 5;00 and 5:30. Take the final numbers, clean the machine, drink some coffee, pack our bags and off we go. 

My dreams were pretty vivid the first couple of nights. They've calmed down. An alarm went off only once during the night and I don't recall what it was. Brian got up pushed a button and we went back to sleep.  We have run across an issue. I now do treatment every other night. MWFSunTTHSat.  ...  The issue is we have deep water fitness on MWF.  When I do treatment Sunday night, Tuesday night and Thursday night, I finish around 5:30. It also means I have bandages on my arms. The scabs on the accesses are not formed. I can't get into water for 6-8 hours. D'oh!! Theoretically that means that I can go to deep water fitness only every other week. But wait!  My treatment is still flexible. The only restriction I have is I cannot miss 2 consecutive days. If I do treatment MWFSat nights then I'm back to swimming! Yay!  And we can adjust as necessary. So then. So far so good. 

We're adjusting. Realizing our evenings are free. We can actually go out in the evenings to do stuff. 

So now. The tools of the trade. 

Some of my medical supplies. 

Boxes of needles and syringes (with and without needles) And needles are not syringes. Face masks, sterile gloves, and a sharps container in the corner..you know, a hazmat container for used needles and things that stick you. And needle-less syringes with blood in them. 


A needle and a syringe. 2 of these needles are inserted into me for treatment and stay there. One needle is blood out, the other needle brings the cleaned blood back into me. The syringe is used to extract medicines from a vial. The medicines are directly injected into me, but rather through the tubes. Brian takes off and discards the needle and screws the needle-less syringe into tubes and administers the medicines. 


Just to get an idea of the size of the needle. The syringe and the needle have protective covers so I don't accidentally puncture myself. The needle is blunt, so it won't hurt. The syringe is quite pointy.  And yes, I've accidentally punctured myself. If I do that I discard the needle because once I've punctured my self, the needle is no longer sterile. The more you know!  


The needle and syringe with the protective covers off. The needle with the blue "butterflies wings" is one of two needles I stick (cannulate) myself with for treatment. I have 2 buttonholes on my upper left arm which are called buttonholes...not unlike pierced ears. I stick myself with blunt needles in those buttonholes. If I didn't have buttonholes, I'd use sharp pointy needles to stick myself, but never in the same place. Story for another day. 


Just to get a perspective of the size of the needles. Yes the entire needle is inside my arm for the duration of treatment. So yeah. 5 hours. 


This little doohickey is called a picker. Because its used to pick the scabs from the buttonholes, scabs form on the buttonholes and yes that's a good thing. However when it's time to do treatment, I need to get the scabs off...cleanly..so I can insert the needles into the buttonholes. And before you freak out, I clean the buttonholes with antibacterial soap for  2 minutes, soak the scabs for 5 minutes with a sterile solution, then swab them with betadine before I "pick" the scab. By then I've really dissolved the scabs and am just removing stray residue. The last thing I want is stray scabness getting into my bloodstream. Blood infection.. (runs screaming in terror from the room). 


Sunday, March 19, 2017

The "I Thought of a Clever Title Last Night Then I Fell Asleep and Forgot It", edition.

Good Sunday morning!  iPad starting at Chicago, "Call on Me".  Cranked the volume up a notch. I realized that I really really missed my music. I'll be writing and "DJ-ing" for a while. Whew. This week is over!  Talk about being busy. Actually the last two weeks. I had the nocturnal home hemodialysis training (NHHD) for 2 weeks..sort of. The week before I was incenter MWF from 8:30 to 2:00. Yuck. But it had to be done. Usher, "Yeah". Party starter!  The this past week, we did additional training at home on Tuesday and Thursday with the nurse at our home observing us. And to add insult to injury, we had to rush to the center on Thursday immediate after treatment for my monthly team meeting. Sometimes after treatment I am spent.  We finished treatment and raced to the center...across town. 12 miles..in Las Vegas traffic. And no we didn't use the freeway. A massive construction project is in progress. Anyway.  We made it. And my neph was pleased with my labs. And I'd just seen my nurse that morning. Lol. We came home and I just chilled until dinner. 

My new treatment schedule is every other night now instead on 5 days a week. So one week it's Monday, Wednesday and Friday. The next week it's Sunday, Tuesday and Thursday. Rinse.  Repeat. I mentioned that we went off schedule immediately because the sorority was having their annual major fundraiser on Saturday. And we didn't want to come home and start treatment. We did treatment Friday night by ourselves and it went fine. Michael Jackson, "Butterflies". I love this song. So pretty. It's hard to type and not lose myself in the music. Lol. Anyway. Brian primed the dialysate Sak earlier in the day..it takes about 5 hours. So that was ready. We had to determine what time to start in order to do the 5 hours of treatment. And be ready for Dads weekly trip to the casino in the morning.  And. Be back in time for Brian to make it on time to his his drawing class. Mission accomplished!  

After I was set up for treatment and was in bed, Brian started pacing and fretting (his words). And I understand sort of being anxious because we were trying something new. But the differences were really slight. We added an addition bandage to my venous access (the blood sensor) attach the blood sensor to the blood sensor contraption. And basically that was it. A new cartridge is used, but that's because treatment is longer and adjust the settings on my portable(lol) kidney. I also doubled the use of heparin, the anticoagulant, to reduce the chance of the blood clotting.  Average White Band, "A Love of Your Own".  Anyway. We chuckled about how we fretted when we brought the baby home and we were determined to stay up all night for..who knows why..  That lasted one night. Lol. Baby slept and we looked like zombies. It was a great analogy. We both went to sleep and didn't wake up until just before the end alarm went off. Success!!  

And along with the treatment stuff, we needed to do stuff for the soirée. I was desperate need of a manicure. I'd gone a few weeks before and the fumes in the salon overwhelmed me. Aha. We usually go as soon as the salon opens, but that particular day I went in the afternoon. Talk about lesson learned. The technician got a mask. And I still almost passed out. :-(  And let's add to the mix I was getting over a stupid cold and finally went back to deep water fitness. And. Social security is doing a review so they want records from my employer from almost 5 years ago. WTF?  And of course when I called the City, they said social security is supposed to send them a form. So I need to call back the social security witch and tell her she needs to send a form. I see circular shit starting. Ugh. And I order my meds and I'm told my cost is now $1047. How the heck did it jump $1000 in a month?  I know I'm not in the doughnut hole. So I have to call my insurance provider to see what's going on. Welcome to next week!  Oh. And did I mention my social security person is off every other Monday and the office closes at noon on Wednesdays?. They want me to hurry up, but then she's  not available. I'll be busy this week. Missy Elliot, "Work It". 

So how was the soirée?  It was great!  Love seeing my sorors in their finery. My sorors can wear some shoes. Mine were flat, but they were pretty sharp. Brian and I like to play dress up. And he cleans up real good! The band was great. I chuckled that the band was playing "our" music...music from the 70s and 80s.  And the band was excellent. My only issue was the room was L shaped and some of us were a ways away from the dance floor. So we never made it to the dance floor. But we did enjoy the music. The venue was on the  top floor of the hotel so we had a beautiful nighttime view of the city. The Persuaders, "It's a Thin Line Between Love and Hate". Remember that. And we stayed almost to the end...which was better than last year. 

Our trainer moved his gym. There was a month where the lease was up on the old gym and the new one wasn't ready. So our trainer came to the condo and worked with us in the workout room. But they're open now!  Looking forward to getting back on schedule. With training and Other stuff our schedule went all wonky. 

Finally, it's Dad's turn to take us out to brunch this Sunday. We're going to The M Buffett. Crab legs ahead!!  And we have treatment tonight. I think we can figure out when to start because we have to leave home at 7:00AM to get to the pool. Signing off with Earth Wind and Fire, "Sun Godess". Yeah!!  Have a great day!  

My fancy shoes. And comfortable! 


And the picture you were waiting for. The dress was not quite off the shoulder, but it fell off my shoulder. Lol. I didn't realize it until I saw the picture. Still,like the the dress. A lot!  

Thursday, March 16, 2017

The "The Last Day of Training", edition.

Good Thursday morning!  No music. But that's because I'm at home. In my bed. Brian in the chair next to me. My nurse in the chair at the foot of the bed. I guess I could put my headphones on. That actually sounds like a great idea. Hold on. I have to ask Brian to get up from the recliner, walk to the other side of the room to get the headphones. Rob Thomas, "This Is How  a Heart Breaks". He also plugged them into the iPad. Then I try to put the headphones on using one hand. I can't. First you say, why am I using one hand. Well, because my left arm has the 2 needles in because this is my last day of nocturnal home hemodialysis (NHHD) training. I've digressed. So since I can't manage to get the headphones on with my free arm, I use both arms. I'm successful in getting the headphones on....and then an alarm goes off. Of course. I'm not surprised. Brian and the nurse look up. Brian checks the alarm error. I confess that I moved my arm. He turns off the alarm, the machine is satisfied and dialysis karma is back to normal. Yay?  Lol. 

The Originals, "Baby, I'm For Real". Lol. This came out when I was in Jr high, maybe?  I'd dream of someone singing this to me. Anyway.  Today is my final day of training for NHHD. We spent 3 days last week at the dialysis training and this the 2nd day at our home.  There a few differences from home hemodialysis (HHD) . There is different equipment. The cartridge and dialysate are different. The settings on my machine needed to be changed to reflect the longer dialysis time. A blood leak sensor was added. We needed to learn how to use it and attach it to me. But in the scheme of things, the differences were slight. It's just a matter of repetition. The biggest issue is doing treatment for 5 hours during the day (Bleah) for training. But it's temporary. 

I'm sure I've mentioned why I changed how I do dialysis but let's review. When I started dialysis 4 years ago(!) I was going to the dialysis center, 3 times a week..treatment lasted 3.5 hours. The more I researched, I learned that incenter dialysis was the worst possible treatment. And I felt it. Those 3 days were lost days for me. Detroit's own Five Special, " Why Leave Us Alone". One of my favorites, with my longtime friend Tony "T Money" Green on the bass!  Got stories about this. One day I'll tell 'em. Anyway. With incenter dialysis I basically functioned only 4 days a week. Yes I traveled, but dialysis days were a wash.  Ugh. 

Just before I left Detroit I decided I wanted to try HHD. However since the move was imminent I waited until I arrived in Las Vegas. Much to my surprise, my first day at my new Las Vegas center, the social worker asked if I was interested in HHD. Hell yeah!  This was in early August. She said training should start in about 6 weeks. It was 5 months. Lol. Once I started HHD, and this was during the 4 week training period, the changes were immediate. But then I heard about NHHD from my groups. I thought about it. And discussed it with Brian. So I asked my nurses and nephrologist about nocturnal. The benefits sounded pretty good. Longer gentler dialysis. And the quality of life aspect. Instead of treatment sometime during the day. Usually in the evening, but we were flexible enough to change days and times with the only restriction that I never go more than 2 days without treatment. That actually worked well, even when I travelled. 

But NHHD?  Michael Henderson, " Valentine Love". Ha! When was the last time you heard this?  NHHD allows me to do treatment while I'm asleep. No setting aside time during the day or moving treatment to an earlier time. Woot! It's longer and gentler treatment. And!  It's every other night. Alrighty!! And the only treatment that is better is the transplant. Sounds like a no brainer. And so here we are. 

Tomorrow night Brian and I will solo. I know you're asking but what about every other day.  Shouldn't you be doing this Saturday night. And the answer us yes, we should. But. Larry Graham and Graham Central Station, "The Jam". I'm bed dancing?  Damn skippy I am!   Ok. We're jumping of schedule right if the bat because the sorority us having a "soirée" Saturday night. And I'm not trying to go soirée ing  then come home and do treatment!  So you see, the flexibility is still there. We talked with our nurse about it and she said no one is going to get upset if you add treatments. Just don't skip a day!  :-D

Brian and I feel confident to get this done with no issues. And I need to add that Brian is a superstar doing this. I'm really overwhelmed that he does all of this. So we should be back on a normal schedule tomorrow. I'm sure we'll have fits and starts but we will settle into a routine. Larry Graham sure can make that bass sing!  

That's it for today. Yes, the training has sort of interrupted me doing the final preparing for Saturday. Like yesterday we did deep water fitness, then raced across town for the manicure and pedicure. Tired Pat, indeed. So yeah, I'll be glad when this week is over. Leaving you with Isaac Hayes, "Never Can Say Goodbye". Yeah, I cranked up the volume. 

The new set up. The machine needed to be moved. 


The old set up. 


Friday, March 10, 2017

The "The Last Day of Training", edition.

iPad shuffled to Heatwave, "All You Do is Dial". Heatwave with members from Dayton, Ohio. As are The Ohio Players. And Lakeside. And Slave.  And Roger Troutman of Zapp. No more Dayton hating. Hey, I got accepted at University of Dayton. They even flew me out for a few days to visit. Mom thought I'd be too close to my cousins so she nixed the idea. But just remember all that talent from Dayton, Ohio. Shout out to Yellow Springs, Wilberforce, Xenia ans Springfield!   

Ok. Last day of nocturnal home hemodialysis at the center. Brian and I sort of soloed. Both us had brain farts. But the beauty of us working together is that we know what each other is supposed to do so we catch each other. The differences are in the set up. The Dramatics, "Fall in Love, Lady Love". Lol. I keep on cranking up the volume. Ok. The cartridge is slightly different. There's an additional dual clamp to help protect against leaking. The numbers that Brian enters are different. They're lower because I'll be dialyzing longer. We will adjust as we get more comfortable doing this.  But again, the best part is I'll be in bed asleep.  Yes!!

Player, "Baby Come Back"  so Brian and I in the Guinea pig zone. We are the first clients in the center who are doing nocturnal home hemodialysis. And I think there is one other client in the Las Vegas area doing nocturnal (!). My nurses finished the last part of their training last Friday. And as they're working with us, other nurses and staff are coming in asking questions and there is even a nurse from another location here to observe. And I also got the noninvasive procedure to shrink my parathyroid. So we're getting a lot of questions and observers. It's fine. Even when I'm in the hospital I get students assigned to me. But I'll leave this with you. You need to know all about you whatever health challenges you have, you need to be hyper informed. Because you have to be your own advocate. 

Al Green, "Love and Happiness". Heh. I'll just go deaf.  Oh oh. While talking with the nurses they told us about another client who is currently on a cruise with the NxStage. I'm interested!!!  Brian and I have a 30th wedding anniversary this year and cruise sounds great!!!

Finally, we need to make some changes for the nocturnal hemodialysis. Have to switch my nightstand with the dialysis machine set up. And what am I going to do with my big, comfy recliner?  We'll figure it out we always do.  Santana, "Black Magic Woman. He sure does make that guitar sing.  The weather is great right now. 80s for the next week. We've opened the windows. The time will come very soon when the temps go up to 3 digits and will park there. 

Signing out with The Delphonics, "Trying to Make a Fool of Me". Did I tell you we're looking to move?  More on that later. If you promoted or shared information on World Kidney Day 2017, thank you so very much. Don't forget the Spring ahead this weekend. Have a great weekend!!


I forgot. One my groups us having a cruise yo Alaska this fall. I may think about it. But. Beaches!!!


This s te senor apparatus to detect blood leaks. The alarm will jolt you right awake, the sensor patch is taped over where the venous needle is inserted. 


Wednesday, March 8, 2017

The "Day 2 at the Dialysis Center", edition.

Good Wednesday morning.  iPad shuffled to Doobie Brothers, " Black Water". Raced me back to my days at U-Mich.  Ok. At the dialysis for day 2 of nocturnal home hemodialysis. My final day will be Friday. I'm kinda liking this treatment every other day thing. It will just as flexible as regular home hemodialysis (HHD). iPad shuffled to Usher (featuring Lil John and Ludacris), "Yeah". Chair dancing time.  Training incenter..we have to learn the slight differences between what we are currently doing and what we will to change. . And I'm on the machine for about 5 hours. Kinda tedious during training, when I go live it'll be at night while I'm asleep....in my own bed. Oh yeah bill get a higher dose of the anticoagulant (controls blood clotting). 

We found out that my nurse will visit us at home Tuesday...during the day...to make sure we can solo.   Monday she showed us the differences between how we currently set up and what the changes will be. Today she supervised me and Brian while we did the new procedures.  We'll solo again on Friday under the supervision of the nurse.  Average White Band, " If I Ever Lose This Heaven". Now I'm here for 5 hours. *sigh*. 

After I finished the 5 hour treatment on Monday , I was tired..so tired. I got home and slept. Ugh. I expect the same will happen today.  And I'm sure there are other things I have to change.  Currently I'm in the chair while inserting the needles. Now my needle insertion angles will change because I'll be in the bed. And what do I do with my right arm while I sleep? There will be needles in me. I shouldn't move too much. Don't want to pull a needle out!  We'll adjust.  The Dells, "Stay in My Corner". Wow. I've really missed my music. Lol.  It's  just as well. I'd probably go deaf cranking up the volume on the headphones!  

The sorority is having a "soirée" this month. I've got my dress and shoes, but I still need a few accessories.  Yes, I'll post pics later. Last night Brian made a "Hudson's" Maurice salad, including the dressing. Delicious. The portions were a bit chunkier, but the taste was right on!  Yum!  

And our trainers gym is moving. So while its in flux, the trainer has been coming to us and we (Brian) have been working out in the condo's exercise room. And she's given us a plan. Looking forward to the new gym opening!  

That's it for today. Signing off with Michael Jackson, "I Can't Help It". Beautiful song. Looking to getting in the 80s this week. This makes me very happy!  Enjoy your day!  

Monday, March 6, 2017

The "Dialyzing at the Center This Morning! What??!?", edition.



Good Monday morning. iPad set to Barry White "Love Making Music". OMG. Listening to Barry with Bose headphones makes you want to start removing clothes!!!  Lol. Yeah well, I'm in the dialysis chair with 2 needles in my left arm and a blood pressure cuff on my right arm.  So the clothes stay on. I did tell Brian to leave the room so Barry and I could have a moment. ;-D  lol. So yeah since I'm doing treatment at the center, I got the iPad and the music. Yeah!! 

Ok. Why am I at the dialysis center. I know you're saying, Pat..I thought you do dialysis at at home. Why the heck are you back at the center?  Ah. Shuffled to Funkadelic, "Standing on the Verge of Getting it On". Well. There are several reasons why I have to do treatment at the center. We've had to review to make sure we're still doing thing correctly. Or that time the nephrologist wanted me to change how I do the needle insertions. Or some tests that need to be taken. But this time. It's for training for a new dialysis procedure. 

Right now I do dialysis at home, 5 days a week.  Usually in the evening, but it's pretty flexible. Depending what we have planned we can adjust the times and days of treatment. But!!  I moving from daily home dialysis to nocturnal home hemodialysis. What this means is that I will do dialysis at night. While I'm asleep. In bed. iPad shuffled to Earth a Wind and Fire, "Sunshine". Chair dancing!!!  Phillip Bailey!!  Anyway. There are a few new and different procedures to follow for nocturnal dialysis. A new do dad is attached to my needles. It's a sensor to detect blood leaks. Sucker is electronic!  It will sound an alarm if my needle access leaks while I'm asleep. Also because I'm on longer, I get a higher dose of blood thinner...we don't need no stinking blood clots during treatment. That would be a very bad thing. Yikes!  And oh yeah. Treatment goes from 5 days a week to every other night. Whoo hoo!  

More dialysis, and longer, but gentler. And it's not interrupting our day because..it's at night...while we're asleep.  The gentler part is important. Every time  I do  treatment  my organs are taking a beating. Especially my heart. Eric Clapton (Cream), "Sunshine of Your Love". I can name that song in 1 guitar riff. I'm sort excited. This the next best thing to a kidney transplant. I mean. I hate everything about my kidney failure, especially dialysis, but we're doing the best we can to have a fairly good quality of life. Oh my goodness!  Isley Brothers, Make Me Say it Again, Girl". Apparently I'm really missing my music!!   Excuse me while I get lost in Ron Isley's  voice. 

So anyway. Today is the first day of training. I have 2 more days of training. Just a few changes. Oh. Last night while I was inserting a needle, while adjusting the needle, it slipped out a little and a small amount of blood spurted up. Brian kinda jumped back, and I jammed it back in the hole. Lol. Nothing like a little fountain of blood to get your attention!  Lol. 

Finally Dad took us the Mexican seafood restaurant yesterday. I had Camarones al mojo de ajo. So so good. Yeah. You get to look it up. Dad ordered the molcajete again and finally decided it was too much food. But it sure is impressive to look at.  And food is good. Brian?  He had shrimp tacos.  And as always, I'm pretty sure we were the only non Hispanics in there. But the food is soooo good! 

Signing off with Stevie Wonder, "Creepin".  Yes, I like Luther's version also, but I like Stevie's more. So there!  Have a wonderful day!!  



This is a molcajete. In a stone pot..keeps everything hot. Shrimp, chicken, steak, cheese and vegetables with a savory sauce in the pot. And when the dishes where cleared the pot was steam steaming!!








Thursday, March 2, 2017

The "In a Holding Pattern", edition.

Good Friday morning!  Long time between entries. That's not a bad thing. Brian was fighting a cold and kicked it over to me. I'm still coughing, but I'm doing much better. At least I don't have that awful chest congestion. Ugh. And of course this coincided with the ablation procedure...so the coughing with an irritated throat along with having the procedure in my parathyroid gland made for several uncomfortable days. But as with most things, it got better. 

I had my monthly kidney team meeting this past Monday. And the dialysis center had a little thank you celebration for care partners. Yes, my care partner is Brian. There were several people there. The funny thing was most of us patients were from Detroit(!).   I later commented to Brian that maybe there was something in the water in Detroit that made our kidneys fail..hmmmm.  

I reported on the ablation procedure to my team. They were excited to hear about it because apparently I am the first patient from the center to have the procedure. I can only say the level of excitement of the medical professionals tickled me. I understand  why. The normal procedure for removal of the offending parathyroid gland is surgery with a three day hospital stay. And it is that long in order to keep an eye on the calcium levels. Apparently the levels can rise and drop dramatically...and dangerously. The ablation procedure causes a slow steady drop in the calcium levels. We took the blood for the tests last night so we should get the results early next week to see how the procedure is working. Including the PTH numbers. Fingers crossed. The endocrinologist is really looking for results within 6-8 weeks. 

This month is National Kidney Month. I'm posting information about kidney health.  I may sound redundant, but kidney health is no joke. I don't wish any of this on anyone. Take care of your kidneys get those tests periodically know what the signs are, but understand, a lot of the signs and symptoms don't show up until it's too late. 

That's it for today. Enjoy and have a wonderful day!