The "The Gang is All Here. And A Few More", edition.

IiPad shuffled to The Jacksons, "Enjoy Yourself". Happy song. :)  I arrive at the center and there are several people in the waiting area.  It's rare to see that.  Something must be wrong. Like a problem with the water.  I learned that the water the dialysis machines use is treated. Or maybe a power problem or something as mundane as being short staffed. Since I was a little early I waited patiently. (Yes.  Me. Waiting patiently - lol). In a few minutes a tech came to get her patient.  I walked in also. Oh who is the few more?  A patient from 2nd shift was waiting also. I mentioned he was here early.  He said he got moved to first shift.  He wasn't real happy about that.  He came a few times when they called him in to fill a chair.  He didn't realize it was permanent.  Lol

I got to the module, everyone was there.  The stick was finishing up big guy.  Next up was new guy.  That meant I had time to set up.  First thing was to find the remote.  Of course it's missing. (Why are we stealing Comcast remotes?  Geez).  My partner lets me know he's feeling ok....even if he has oxygen this morning. But he's relaxed. Which is a great state for him. Lol.  New lady is back.  She had her fistula just put in. She's a bit skittish, but she's intent on doing what she's supposed to do.  We talked about our arms being numbed for the surgery and the feeling not coming for over 12 hours.  Lol. "I thought my arm was resting on my stomach, but in reality it was flopped next to me". Lol.   Saggy pants guy was already hooked up and asleep. I went to wash my arm, but the soap dispenser wasn't working.  I visited module 1 to wash up.  :-)

Peabo Bryson (spell check changed Peabo into Peabody - lol), "I'm So Into You".  My regular tech is here and she preps me, but since the buttonhole debacle a few weeks ago, only certain people can stick me to create the new buttonhole.  Super tech sticks me in record time and we're off and running. It's Friday morning and it's quiet. My gang is all here.  And I'm watching "My Name is Earl" instead of "The Today Show".  *Sigh*.  

Steely Dan, "Peg".  A few more things about the Home Hemodialysis (HHD) presentation. I was asked about the cost.  It's covered under my insurance.  Everything.  The machine, the supplies, the delivery of supplies, even when I travel.  The training is covered as is the labs.  My doctor told me even that the chair was covered by insurance.  He offered the different options when I first started in-center dialysis in November 2012.  The options were peritoneal dialysis, home dialysis with the NXStage machine or home dialysis with an in center machine(!).  This was offered up within my first 2 weeks of dialysis.  Heh.  I was still trying to adjust to just being on dialysis.  This is fine.  I'm ready now.  I've had a chance to investigate all of my options.  I'm ready to do this.  I'm kinda excited to move to HHD and having more flexibility and freedom.  :-)

Doug E. Fresh with Slick Rick , "The Show".  Yes, I like Slick Rick.  I have no shame.  My nieces turned me on to him in late 80's.  I think I'll remind them.  They are now a teacher and registered nurse....you know, grown and respectable adults. Lol.  I want to talk a bit more about the HHD presentation. The guest speaker at the HHD presentation was a gentleman named David Rush.  Never heard of him.  Apparently he was a part of Pitbull's crew.  A recording artist. I'm gonna listen to hiis tracks eventually.  But he sure did explain a lot about HHD!   

His presentation was geared toward dialysis patients, of course.  He used dialysis humor.  It was great to have someone who is familiar with our condition explaining how he made the decision and understood our needs and concerns. My take away was referring to first shift patient as zombies.  Lol. So true. :). He has been through what we've been through. I'll add the link about him again.  

Logging out with Jeffrey Osborn, "Don't You Get So Mad". Shawn has finished her first year toward the PhD. Yay!  She'll be working on a project in Springfield, Illinois this summer.  She explained it to me.  It has something to do with archiving and test dig sites.  Archeologogy. Lol.  Enjoy your weekend!  

:-)

Home Hemodialysis - David Rush

The "I Saw 2 Rainbows Yesterday!", edition.

iPad shuffled to  Ray Charles, "What I Say, Parts 1 & 2".  Yes, I saw 2 rainbows yesterday evening.  Earlier in the afternoon I mentioned to Brian that I needed to look for rainbow. The conditions were just right.  I didn't see them until 7PM. We were out and about yesterday.  Tuesdays and Thursdays are productive days along with Saturday and Sunday.  Mondays, Wednesdays and Fridays are chancy. I may feel great...or not.  Like last Wednesday.  I made an appointment for a haircut.  By Wednesday after treatment I was not feeling up to it. :-(  I really need that haircut.  I've digressed.

Isaac Hayes, "Never Can Goodbye". The day started out with a manicure and a pedicure.  I'm sorta taken aback with how fast my nails are growing. :-(   Afterwards we went to visit my Wendell.  He'd been moved to another hospital.  He still has the breathing tube.  It's in his neck.  And he still has the feeding tube.  In spite of all of the hardware he looks better.  The problem is, he can't talk. He can move his lips, but the breathing isn't letting him speak. Brian and I tried to lip read. We probably have a 33 % success rate. *sigh*.  He can write, but he's still weak.  And his penmanship was suspect when was healthier. Lol. As frustrating as it was for us trying to understand what he was saying, I can only imagine his frustration trying to communicate.  Brian and I will have to practice lip reading.  We did catch he wants some real food. I asked what milestones he needs to reach to get the tubes out, but couldn't understand the response. Again, in spite of that, he was better.  Oh yeah, we had to wear the sterile coat, the gloves and a mask when we went into the room. He's in ICU attached to a lot of stuff.  It was exactly that way with my mom......  Keep him in your thoughts. 

The Doors, "Light My Fire". I like the opening organ(?) harpsichord(?). After the visit we went to lunch.  Red Lobster. Guilty Pleasure. No hand slapping please. When we left it started raining. We could see lightning to the southwest. The direction we were heading, of course. . Don't you like it when you can see the rain coming down hard and you're heading straight towards it?  Lol. Anyway we got home.  I took a nap because we still had someplace to go later in the afternoon.  I'm like Pavlov's dogs when it comes to thunderstorms. I sleep and I sleep hard!  

 Guy, "Groove Me". Geez..I start bopping and chair dancing as soon as the song starts.  Lol. " It. Ain't. Over". The last task of the day was an event sponsored by the group that runs my dialysis unit, Greenfield Health Systems. It's part of the Henry Ford (Hospital) Health Systems. They have dialysis centers in Southeast Michigan. It was to explain the benefits of Home Hemodialysis (HHD). It's a modality that I've investigated, am interested in, and will probably use.  

Geto Boys, "Mind Playing Tricks on Me". Thanks Brian. ;-)  HHD allows me to dialyze at home, more often. It also allows me to travel without taking out time to go to the local dialysis center. I'm also able to dialyze more often. Like 2-3 hours per day 5-6 days per week. At home.  On my own time. Maybe watching the Today Show. Or the evening news.  Or Judge Judy.  Or Jimmy Fallon. You get the idea. My fluid restrictions will ease up.  As well as I can have a banana or guacamole or the rare occasional Bloody Mary.  We will attend training. Yes we. I need a partner.  We'll both learn to stick me (cannulate).  We'll both learn how to set up the machine, how to hook me out and how to run me off.  I'm kinda excited about switching off.  It also is not as harsh on my body.  My heart, my bones. Yay!!! 

Signing off with Ramsay Lewis and Earth Wind and Fire, "Sun Goddess". Happy, soothing song.  :-). Enjoy your day. It's hump daaaaaaay!

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

iPod shuffled to "Spread My Wings", Troop. Nice smooth 80s hip hop. Video had lots of Jheri curls.  Lol. I can overlook that. The song is good. Holiday at dialysis.  It's quiet and a little empty. My partner isn't here. He was here on Friday (after I fussed at him on Wednesday lol).  I see what the plan was. Come Friday. Skip Monday. At least he planned, I guess. He misses Saturday, Sunday, Monday and Tuesday. He may show up on Tuesday. Definitely come on Wednesday.  I fuss at him for missing treatment. His private little nagger (with a smile).   He's getting better about skipping treatment, but he's still gonna do his thing.  I just mentor away. :-)

Steely Dan, "Babylon Sisters". Last week (and maybe this week?) the State of Michigan was inspecting the dialysis center. It started last Tuesday.  When I came in on Wednesday there already changes. And it looked like the entire center staff was here. Lol. The recovery chairs had coverings over them.  Just the recovery chairs, not the chairs we sit in for treatment.  I asked why?  When we finish using the all of the chairs the staff cleans, sanitizes and bleach the hell out of the chairs when patients finish. Have you ever seen super strength bleach wipes?  I have seen them and can smell them from across the module.  Lol. The only time I'd ever seen the chair coverings was when a patient had bed bugs (!). :-(  yes he was on the other side of the room from me... And on 2nd shift....thank goodness.  Anyway the only answer I was given was the inspection team said so. <Shrug>.  

"Me, Myself and I", Beyonce.  "Its all I got in the end".  <----  Remember that.  Ok back to the inspection.  There is a ledge that goes around the module, behind the chairs.  The patients usually put belongings there.  Well now we can't. We have trays on our chairs to put stuff on but they're small.  The left side is for the patient's arm for dialysis...the arm we can't move. My bag is pretty large and I already have the iPad, the phone and my candy on the right side. So yay(?)....the bag goes on the floor.  These are the immediate changes that directly affect me. I saw the inspection team worrying the staff, especially the top 3 nurses.  One of the techs told me the inspectors will be back this week. We'll see on Wednesday. And yes, I have no beef with the inspection. It's for the protection and safety for the patients. 

Parliament, "Give Up The Funk (Tear The Roof Off the Sucker)". "We need the funk. Gotta have the funk". Are you moving now?  "We gonna turn this mother out".  On the random status front, my dialysis machine had issues this morning. So I'm in my partner's chair. So his not being here works in my favor. I'd rather he'd be here for treatment.  That being said, they just brought the replacement machine in. I probably would have easily lost 1/2 hour of treatment time, if not more. I'm good. 

Solange, "I Decided, Part 1". I like her. Did I tell you I got infilitrated 2 weeks ago?  That was a clusterfuck week. >:-(   My venous acces was acting up.  Some techs don't even try to cannulate me anymore.  There are now a select few that will stick me.  Well another tried, couldn't get it, then decided to use a sharp needle instead of a blunt needle in the access. Ok, if you say so. The next treatment a stick team leader found out and informed me that should never happen and now my venous button was ruined and a new one needs to be started.  >:-(   So for that day, I got a regular stick with a sharp.  And the that needle slipped and I got infiltrated. Blood immediately ran into the tissue near the site. My arm swelled immediately and it hurt like hell.  

Kool and the Gang, "Summer Madness".  Well, the new button has been started.  I ask for 1 of 3 techs  to stick.  The swelling of my arm has decreased but I've got a huge impressive bruise. The pain eventually subsided after several days. I no longer needed an ice pack. 

So that's been life in dialysis the past few weeks. What new surprises are in store for Pats Adventures in Dialysis?   Stay tuned!  <feel the sarcasm>.  Lol. I'm looking at my phone waiting, pleading for a call from the transplant center. *Soon?*. 

Signing off with "Party Down", Little Beaver.  Nice guitar. And I like the way he searches for his notes during the vocals.  Enjoy your holiday and remember the veterans.  We have a lot in my family. My grand fathers, my uncles and great uncles, my dad, my brother and my husband.  Lol. One day I'll tell you my reaction to Brian in a uniform. ;-)

The "How Did I End Up Like This Redux. Part 2", edition.

iPad shuffled to a Terry Callier, "Ordinary Joe". My dad listened to WJZZ and they'd play this song.  It caught my attention. :)  Back to the story. All the different doctors I was seeing were treating individual symptoms. The orthopedic surgeon indicated some concern about the amount of Celebrex I was prescribed and told me to talk to my primary care physician who cut my dosage in half.  Anyway, the orthopedic sturgeon gave me the last steroid shot in my knee that I'd take.  Also this was the time I realized I was losing weight.

I was tired. So tired. Brian drove me to work on his off days.  I didn't mind driving. I did mind walking from my car to my office. How sad was this? I parked in the structure directly across the street from the office building. In the handicap spaces. I could not have legally parked closer. :(   

Jeffrey Osborne, "Don't You Get So Mad". December 24, 2011 my mother fell and never walked again. We had planned to go out to Vegas the first week in January because dad was having hip replacement surgery.  This was the first time I had time use the wheelchair services at the airport.  We arrived in Vegas saw mom in the rehab center.  2 days later we're taking dad  to surgery.  Of course the hospital and rehab center were on opposite sides of town.  Lol. We spent significant times commuting to visit parents. :)  At this point it was obvious that I wasn't eating. We'd go out and I take a few bites of food and just didn't want anymore.  It was a waste of money for me to go a restaurant.  

We came home after 2 weeks. My brother went out for a week, then I returned for another week...to take care of dad.  And I'd take him to visit mom.  When I returned to Detroit  I was exhausted.  At work My staff was doing fine...getting the job done.  My time was spent trying to get my client to pay their vendors. WTF?  I was an Information Tecnology manager, not Finance. Lol. That was wearying. Then my counterpart in my client department announced he was leaving.  That was my cue to announce my retiring. I was tired, I hurt and dealing with stupid wasn't fun.  I digress.

Once I announced I was retiring, I had a burst of energy. (Imagine that).  I officially retired July 2, 2012.  I felt..ok...until September.  And by ok I mean that I didn't feel any worse.  Not any better, but not any worse either.  In September walking got harder, getting up out of chairs got harder.  Brian had to assist me getting up out of chairs.  Walking up the stairs to the bedroom or down to the basement was a chore. Early October I got a weird metallic taste in my mouth. Late October I experience the first of 4 incidents where I could not breathe.  I got a new car in late July. It had less than 500 miles on it.  I just stopped going anywhere. I still hadn't figured out how to operate the heating and cooling.  Lol. 

The Guess Who, "Undun".  The last week in October I visited my primary care physician. He was alarmed at my appearance. He scheduled me for tests on Friday.  While leaving his office I experienced my second breathing incident. We were outside.  I was able to breathe eventually and we headed home. Of course in hindsight we should have gone back inside. That last week I didn't even try to go upstairs. I slept in the first floor bedroom. 

Roy Ayers, "You Send Me". For some reason it took me a few years to find this on iTunes. Don't ask. Lol.  Friday, the day of my tests came. I was in a fetal position. I couldn't move. I can't explain it any other way.  I needed to get up and I couldn't. It hurt so much. I finally got up.  My appointment was at 1 PM.  I got up and experienced that can't breathe thing for the 3rd time. Now I was frightened. It felt like I was drowning. I'm gasping for air.  I was so scared.  At this point Brian  called EMS.  Good thing he was off work that day.......

Once at the hospital, I'm being questioned. Blood was taken, I guess. I don't remember.  While talking with a resident, my fourth and final breathing incident occurred. It scared the day lights out of the resident, but the nurses never missed a beat. :)  A few moments later a doctor came and told me my kidneys had failed and I needed dialysis immediately.   Ok I didn't know what dialysis was. But if it was going to make me feel better I was on board.  It was nice to know what was making me so ill.  

Al Green, "I'm Still In Love With You".  I don't remember my first treatment.  I do know when I woke up the next morning I felt MUCH better. I was still weak and tired, but no morning sickness, no metallic taste, and no breathing issues.  Oh. What caused the breathing issues?  The fluids and toxins had hit my lungs. I WAS drowning. I was told if I hadn't been taken to the hospital when I was, I'd have been dead within 2 hours. Wow!  

The Dramatics, "Door To a Your Heart". The harmonies.   So there you go. I'm now going to dialysis 3 dates a week. I've been on the kidney transplant list for a year. To date there are over 100,000 people on the list nationwide. The average wait time is 3-7 years, depending on where you live. I'm asking people to be organ donors. You can do it via the Secretary of State office in Michigan. The Gift of Life.  Feel free to ask me questions about anything I've written in my blog.  I also push my friends and readers to get a blood test to make sure their kidneys are healthy and I let them know their risk factors. I don't want any of you to go through what I went through.  Love you too much!  :-)

Signing off with The Esquires, "Get on Up". That's right, "Get on Up" and get your kidneys tested. :-)

Have a great holiday.  Yep, I'll be dialyzing on Memorial Day. No vacation from dialysis.

The "How Did I End Up Like This Redux. Part 1", edition.

iPad shuffled to "Grapevyne", Brownstone. How fortuitous this song comes on.  It's one of the most played songs on my playlist.  I'm sure one day I'll get tired of it...but not yet.  It's been with me through the entirety of my dialysis adventures.  As an aside, a note was posted on the entrance to the center this morning, that a State inspection was in progress.  Lots of activity this morning.  Lol. The center doesn't usually come alive until 8AM.  I'm seeing people in early who never come in this early.  I'll write about it on Friday.

This is blog entry number 204.  204!!!  With exception of about 5-6 entries, all have been written in the dialysis chair. 3 days a week since February 2013. <mind blown>.   I need to repeat how this started because I have newer readers and sorting through 200+ entries is tedious. I need to figure out how to index this thing. Ugh. 

"Blurred Lines", Robin Thicke featuring T.I. and Pharrell. Chair dance. 'Nuff said.  Ok. Here's the answer how Pat ended up with End Stage Renal Disease (ESRD) and rushed to ER.   I can pinpoint when I started having problems. Not sure if my symptoms were actually the initial stages of kidney failure, but they are indicated as symptoms. In 2009 I was diagnosed with spinal stenosis, arthritis (right knee) and plantar fasciitis. All painful and made mobility difficult. Several iterations of steroid shots in my knee and my back, with one of the pain center doctors suggesting back surgery(!).  Months of physical therapy and eventually using a cane. 

Young MC, "Bust a Move". More chair dancing. :)  By the fall of 2011 there was a change in my appetite.  I started losing weight. My friends shake their head when I tell them I thought I discovered the secret to weight loss. I'd get hungry, but I'd "power" through  the hunger and then after a while I would no longer be hungry.  Lol.  Anyway. The next several months walking become more difficult. It didn't affect my job. I had offsite meetings so I could drive to them. Also by this time my doctor had me get a handicap license. I also starting having morning sickness.  Well not THAT morning sickness for the obvious reasons. <wink>. It was absolutely dibilitating.  I started taking more sick days. It was that bad. I'd heave for up to 20 minutes or so every morning. It wore me out.  And if I made it to work, I was ridicolously tired. I'd close my office door and would sleep through lunch (I wasn't hungry, remember). 

"All Day Music", War. So. Soothing. :)   Eventually I started having trouble getting out of chairs.  I'd have to rock and bounce to get up.  Toilet seats are impossibly low. Even handicap stalls. They have rails, but you need upper body strength. And I was getting weaker.  Back to meetings. If the chairs were to low, I'd have to ask someone for assistance. I worked with Police and Fire/EMS. The good gentlemen would always assist if asked. :)

Rare Earth, "I Just Want to Celebrate". By January 2012 I felt miserable. Yes I was seeing doctors. Different doctors for different symptoms. Indivually, the symptoms did not point to kidney failure.  Collectively they did. The orthopedic surgeon wasn't looking for kidney failure. The gastroenterologist wasn't looking for kidney failure. The pain management doctor wasn't looking for kidney failure....

To be continued.  

Signing off with the Isley Brothers, "Hello It's Me". <Think I'll go find Brian when we get home and do a nice slow dance>. Enjoy more photos from the zoo walk and enjoy the weather...after the storms. :)

The "No Cane, But There Was Pain. It Was a Good Walk", edition.

iPad shuffled to Maxwell, "Ascension (Don't Ever Wonder)". I'm moving the photos Brian took yesterday over to my " cloud". I'll be back in a few.  It took twenty minutes, but I did have distractions. Monday morning at dialysis stuff. Lol. Michel'le, "Something in My Heart". An odd song to come out of a hip hop/rap era. It's a pretty song. So before I go into the NKF of Michigan Zoo Walk, I'll tell you about Monday morning at dialysis.

Last night I started having trouble breathing again.  Feeling fine now.  No oxygen needed I'll forget to tell the doctor on Wednesday.  Then cycle though this again. *sigh*.  Anyway, I felt almost 100% by the time I got in the chair.  Ok. We pulled up to the medical center.  2 cars are in front of us. The first car, I knew the occupants.  It's another husband dropping off his wife who is in a wheelchair.  He takes her in and waits with her to get called in. They are pleasant. The other car, the "different" guy gets out. He heads to vending machines. I make a beeline to the elevator.  I didn't want to get stuck on the elevator with him.  I get to the waiting room. My partner is there. Fussing. Lol. He didn't want to go in because the mean lady was in our module. He did go in anyway.  The three of us went in.  Me, my partner, and "different" guy. I head to my chair to put my stuff up. Partner jumps on scale. I take out my blanket, iPad, candy, headphones and phone then head back to scale to get my weight.  I can see "different" guy is still trying to get his weight.  Most of us get on and get off.  He does some kind of ritual....like the weight is gonna change. 

While I wait to weigh (lol) my buddies in the other modules wave. I ask about their weekend. I was informed one had diarrhea but he was ok now (!). Lol. The tech bust out laughing and commented about TMI. I just rolled with. I guess I feel fine that my fellow patients feel comfortable enough with me to let know. Lol lol. Roflmao. 

Atlantic Starr, "Send For Me". Can't decide which version I like best..Atlantic Starr or Will Downing. I like then both.  Anyway back at module, partner is fussing about needing his  blood  pressure meds.  Of course he gets riled up and his BP spikes. :(   Everything is calm now....for the moment.  These are my people. :-)    All hell will break lose around 9AM. 

Ramsay Lewis, "Sun Goddess". Zoo Walk.  We thought we'd get there early. Lol. So did a lot of other people.  Anyway, we pre registered, so there was no line for us.  We presented our tickets and entered the zoo. Found the champions tent..for people on dialysis, donors, and people who have had transplants and 1 guest. We got some stuff and a knit cap..which was nice because it was a little chilly.   Then We found a table.  I sat while Brian went to the "swag" tent to get some bags because our arms were full from the champions swag.  Again they fed us. Bagels, doughnuts, fruit, sandwiches, tortilla chips and salsa, water, juice and iced tea.  And that's just what I saw. Pens, mirrors, earbuds, popcorn, Rice Krispie treats and more bags. And coffee. 

Mike found us and my friend Julia found us.  The pre walk warm up was hosted by Brandon Roux. A yoga group had us stretching, a fitness group had us doing a routine to "Happy" which makes people move. Lol. And finally we're off. I walked pretty well. We enjoyed the animals. I got tired near the end, but my time was better. Mike asks me why I'm going to fast?  Lol. I didn't realize I was.  I ended up with a slight backache, my left outer thigh was hurting. I got home and took a nap.  Then my body really protested.  Lol. A little Aleve and I was ok. 

Thanks to everyone who sponsored Pat's Adventures.  I don't have to final tally, but collected close to $800.00 toward the prevention of kidney disease.  Thank you all so very much.  :-)   Please enjoy the photographs. :)

Signing off with "The Jam", Larry Graham and Graham Central Station. Funk at its finest. "Sugah". Have a great day!  

The "It's Been a Heck of a Week. I'm Glad It's Friday", edition.

iPad shuffled to Barry White, "Never, Never Gonna Give Ya Up". Full orchestra and a wa-wa on the guitar. :-)   What a week. On Saturday we got rid of more stuff. The china and glassware are gone. Sunday was Mothers Day.  Oh yeah. FedEx said they delivered a package and said they left it on the porch. But I was at home when they supposedly left the package. Working with FedEx was a bust.  I contacted Macys.  They apologized and are resending the package. I had to get the mammogram order from my primary care physician. Got it and made that appointment.

Went to water color class. The teacher asked if I had a turkey platter (talking about getting rid of stuff). I thought so, and I didn't recall packing it away. Brian thought it was in another cupboard.   And it was.  HUGE turkey platter with pilgrims. Lol. That thing was heavy. Teacher now has a turkey platter.  Brian found ton o' pictures.  He's getting them put on DVD.  I have enough for throwback Monday, Tuesday , Wednesday, Thursday, Friday for about 10 years.  And I threw out a lot. I asked why had so many scenery photos. Brian said it was important at the time.  Lol. Lots of photos from my mom's first marriage. I don't know those people. I tossed the photos. But it barely made a dent.  Lol

Lakeside, "Fantastic Voyage". Funk!  Chair dance!  Yes, I looked through boxes and boxes of photos.  Oh yeah, the front porch needs to be replaced, so I've been dealing with the contractor. There's a hole in the porch!  Brian got a big ol flower pot to put over the hole.  The hole is a big ol break your ankle lawsuit hole. :-/   Waiting for the permits to be pulled.  Work should start next week.  Driving around northwest Detroit, a lot of porches are in trouble. Most are around 70 years old.  Oh yeah, the contractor says don't put salt on the porches.  You know we all did. Eh. 

On the dialysis front my venous button hole access needs to be reestablished. To say I'm pissed is an understatement. Grrrr. The infiltration that happened on Wednesday hurt. That's when the needle slips and blood gets into the tissue.  My upper arm started swelling immediately and it hurt.  Tears to my eyes hurt. One of the techs held my hand while they worked on it. I'm sure I broke her hand. :-(  I'm sorry.  Today is much better, but I need to talk to someone to see about reestablishing the venous button hole. My great fear is the whole thing blows and I have to get a chest catheter again and I'll have to have additional surgery on the fistula. This makes Pat a sad panda. 

The Whispers, "It a Just Gets Better With Time". *sway*.  The Junk Commander came yesterday to haul away more stuff. Shawn's room is empty. E-M-P-T-Y.  There was an echo in the room when we talked. Lol. What is the tally so far?  Living room, dining room, 4 rooms in the basement - tool room, furnace room, laundry room and bar/rec room. And most of the computer room. Shawn's room and the cedar closet. And the front hallway. All empty. Family room has 2 chairs and a TV.  Rooms left are our bedroom, 1st floor bedroom, back bedroom and the kitchen. Wow.  Everything still must go. Pots and pans, plates, silverware. 

Jackson 5, "Lookin' Through The Windows". Finally doing last minute prep for the NKFM Zoo Walk on Sunday.  I've had a few people indicate they will walk. We'll see who shows up.  Should they come, the total collected should exceed $800.00!!!  Well done team!  And thank you so much!  Hah. We're besting my lead social worker at my center and it looks and if we're one of the leaders for my corporate group, Greenfield Health Systems. :-)   If you're interested in walking, it's this Sunday, May 18 at the Detroit Zoo, Woodward and 10 Mile.  Registration is at 7:30 AM. Walk starts at 8:30 AM.  

Signing off with Eddie Holman, "Hey There Lonely Girl". Isn't that just a beautiful song.  And his voice.  It's pitch perfect. Oh yeah what did I get for Mothers Day?  Skull Candy headphones for women. My husband must have heard me talking about them. He's still pretty cool after 26 years. <3

The "It Started Out OK Then It Went South. Boo", edition.

iPad shuffled to  Vanessa Williams, "Dreamin'".  Isn't she just a great entertainer?  And gorgeous too.  I was thinking about my health then and now. I wasn't scared once I was told my kidneys had failed , but I felt I was stepping into the unknown.  And I was.  I wasn't scared because I was relieved to know what was wrong with me. In retrospect, the list of symptoms is staggering.  The loss of appetite. The constant pain.  The back pain, the knee pain. The foot pain. The fatigue. The "morning sickness" - heaving for almost 30 minutes every morning.  And finally the inability to breathe.  That was scary.  Imagine going to physical therapy being tired all the time.  Steroid injections in my back and my knees.  1 (one) dialysis treatment and all the symptoms went away. Whoa!!

The Stylistics, "Stop, Look, Listen (To Your Heart).  Loved this group the first time I heard them.  Anyway, once I got out of ICU and into a regular hospital room (3 days later), Brian brought me the iPad. Let the research marathon begin!  I must add that I don't recall much education about End Stage Renal Disease (ESRD) or dialysis while in the hospital or from the health professionals. Heh. They asked a lot of questions though. I even had to ask for a dietician before I was discharged.  I was sent to get the chest catheter.  I had no idea what that was. I ended up asking the person who inserting it about it.  

When a representative came to schedule a fistula, I had no idea what he was talking about.  Once he told me what it was I declined to go. Not because I just didn't want it, but I was betting on this kidney thing being temporary...acute.  Alas it's chronic. 

The Isley Brothers, "Make Me Say It Again Girl (Part 1 and 2). Squee!  I finally go to dialysis at the clinic. What is this place?  Who are these people. So many people and machines.   I got a tech who explained the machines.  My doctor shows up and explains my labs.  But still, the bulk of my information comes from the internet...websites, message boards renal diet sites. I eventually start asking good questions based on what I've been reading.  Now I am informed, but there are those who are infinitely more informed than me.   And that's ok. 

So today. What happened. My venous access (buttonhole) is a problem to all but the most experienced. And it seems to get worse than better.  Fact: buttonholes use blunt needles. On Monday,   A tech who has come to assist decides the use a sharp needle to redo the venous.  I'm skeptical.  Well I was right to be skeptical. *sigh*. Today, I told a stick team member about it. She got pissed and said that should never happen and informed me that a new button hole will have to be established.  Yeah.  I got pissed also. So a sharp is inserted for a venous access and it gets infiltrated. ;-(  What iis infiltrated you ask?  It means the needle has dislodge and blood leaks into the surrounding tissue.  Sigh. It hurts and my fat arm is even fatter.  I have an ice pack on it. Ugh. 

The Delphonics, "Trying to Make a Fool of Me". Again, what's a Delfonic?  Lol. So the now.  Life on dialysis is ok. It's clearly better than the alternative. But the complications are always looking over my shoulder.  Like the fluid overload, trouble breathing and now the (painful) infiltration. Trying to keep my spirits up. Some days it's just hard.  Well I am looking forward to the Zoo walk. Here's hoping I'll feel better on Sunday. 

Signing off with Jill Scott with Anthony Hamilton, "So In Love". Watch out for the weather. Again. Random thought. I'm not that tall. 5'5.  Yet it throws me for a loop when I'm standing in a group of women and I'm the tallest...by far!  Lol.  :-D

The "Day After Mother's Day at Dialysis", edition.

iPad shuffled to Carole King, "It's Too Late". Everything on the Tapestry album was good. It's the Monday after Mother's Day.  Let's start with Mother's Day.  We went to Motor City Casino for breakfast buffett.  I didn't deliberately stuff myself.  I watched my fluids. I wasn't miserable, but I was close to uncomfortable.  I guess I may have had a lot of water on Saturday but I behaved on Sunday. I think the damage was done on Saturday. More on Saturday later.

Will Downing, "Send For Me".  Love his voice and love this song. After breakfast, we went home for a moment.  I took a short nap. Then we headed for the Star John R to watch Spider-Man 2, 3D.  We'd normally go to Emagine in Royal Oak, but they had only one show time and it was at 10:30 or something.  Anyway. We got to the Star. All of the seats were recliners with cup holders!  We were still full from breakfast.  All we got was water and a cup of ice.  We settled in our chairs, reclined and sipping water. 

I admit I am not a Marvel fan. Not that I don't like Marvel comics. It's that I just don't care.   Or at least I didn't. I've seen Captain America 2 and Spider-Man 2 so far. Who knew I'd like these action packed 3D movies.  The trailer we saw for Xmen earlier didn't impress me. The one we saw yesterday?  I'm impressed.  Lol. And I still want to see Maleficent. In 3D of course.  Yes, I have now watch the original Captain America and Spider-man movies. 

Rob Thomas and Santana, "Smooth". They just belong together. And that guitar. Yeah. Anyway, after the movie I was feeling bloated. Got home and took another nap. You know, my sleeping issues may come from the naps I take. <shrug>.  Shawn called. You know I loved that!  One more week and one year toward the Masters and PhD degrees done!  She laughed at me for liking 3D movies.  What can I say?  :-)

 Queen, "Bohemian Rhapsody". Did you know that guitarist Brian May is really a rocket scientist?   Well he has a PhD is astrophysics. Lol. Sounds like a rocket scientist to me. :-D  We went to visit (my) Brian's mother and then came home in time for me to watch the season finale of "Once Upon  a Time".  At some point during the TV show I started having trouble breathing. Unfortunately it lasted through the night.  

I get to dialysis. Apparently many of us over indulged on Mother's Day. What tickles me is there was more noncompliance on Mother's Day  than  Christmas or Thanksgiving. Lol. Patients were moaning and groaning, having more than average fluids taken off. Several of us are using oxygen. Yes I am using oxygen this morning.  I'm feeling better.  I was holding out for oxygen here instead of going to the hospital.  Yes, I was feeling that bad.    No, I didn't tell Brian just how bad it was. :( 

The Roots, "What They Do". Love the video.  After all was said and done, I still enjoyed my Mother's Day.  I did learn a compliance lesson. Trouble breathing is scary.  Oh yeah, Saturday. The rest of the boxes in the living room are gone. Those were the china. I packed my winter clothes. Those will be mailed this week. I went through all of the photos. I threw out about half. I kept photos of my mom. She was a hottie.  I think those who knew my mom will be surprised.  I'll post them in a while. :)

Signing off with The Stylistics, "You Make Feel Brand New"  have a great Monday!

The "The Vernor's Slushee at 7-11 Tastes Like a Boston Cooler. Yum".

iPad shuffled to Jeffrey Osborne, "Don't You Get So Mad". So here's my Jeffrey Osborne story.  Lol. You know I have lots of stories. My coworker and I had stepped outside for our mid morning smoke.  It was a nice summer day. Some guy comes up to us and says he's giving away tickets for a show at Freedom Hill in Sterling Heights. Well, we live in Detroit. Sterling Heights is a ways away. He says well, the tickets are for Jeffrey Osborne and Teddy Pendergrass. We perk up. The guy says they're lawn seats.  We discuss it and say what the heck. They're free and it's Teddy Pendergrass.  Of course it's Teddy in a wheel chair, but it's free.  We round up another manager from our department, pack up our lawn chairs that evening and go to the concert.  After work, of course.

Jeffrey was the opening act. He killed it.  He gives a great concert.  And Teddy?  Remember he was basically a quadriplegic at this time. But he was pretty good. His backup and help were his children.  All in all, we enjoyed the outdoor concert. And it was free. :-)

Wednesday at treatment, I was happy to see 2 ladies from second shift return. One has lupus and is in and out of hospital a lot. The other is brought in on a stretcher by a medical transport crew of 4. They have to hoist her from the stretcher to the dialysis chair. She's also on nonstop oxygen. Neither had been here for a while. Both had been in the hospital for quite some time. :-(.  Oh and when I pulled my venous (top) needle, I didn't press on the correct spot. I got the geyser of blood. Spurting high and strong. And no, I'm not freaked out. I'm more amused. Lol.  So I was quite a bloody mess. The nurse told me I was acting up.  Lol.  Oh yeah. Thanks to all the nurses.  That includes the ones at the center and my friends.  They are the heart of the center. 

The O'Jays, "I Love Music". I can name that tune in 2 notes. Seriously. Lol. Love the O'Jays. I received a check for the walk. I turned it in and received tickets for entrance to the zoo. Wristbands for the kids for access to the Disney Radio tent and my purple "Champions" tent.  The regular tent is huge. Last year they donuts, bagels, cream cheese, fruit, water, chips with salsa, popcorn, bags, and lots of swag.   Oh, what is a Champions tent?  It's the tent for people with kidney disease and for transplant donors. :)    The goal is $800. We've collected $700.  Thanks to everyone. 

Michael Henderson, "Valentine Love". A song that stands the test of time. Finally, I'd made an manicure/pedicure appointment for yesterday. 87 degrees baby!  Best day for the appointment.  I went to Rouge in Ferndale. It's different from the run of the mill nail salons.  Try the deluxe service.  I think you'll like it.  I don't go there every time, but it's a good place to start off after winter.  Oh yeah, I got a shiny blue color for my nails. All that means is my kid has influenced me. No red or mauve here. Lol. 

Signing off with Usher featuring Lil Jon and Ludacris, "Yeah". Ready for the weekend. Have a wonderful Mother's Day.  And for those of us who've lost our mothers, wrap yourself in your memories of your mother. I miss my mommy. But I always smile when I think about how much she loved me.  And I loved her.   <3

The "All of a Sudden We're Busy", edition.

iPad shuffled to "Fire and Desire", Rick James and Teena Marie. Both gone too soon.  So what's keeping us busy?  Well the move, for sure.  I have 2 appointments to go to in order to remain on the transplant list. They are time specific.  What I mean us that I needed to make the appointments close to last year's date. So May for one and June for the other. Heh.  My transplant coordinator sent me the dates. I also have to complete the dental work...required for a transplant. It's time to visit the opthomologist.  But I guess it's not so bad compared to the amount of appointments I had last year.

The Jackson 5, "Who's Loving You".  Lol. That instantly rolls me back to junior high!! We are taking painting classes.  Acrylic class and watercolor class. The acrylic is just do what the instructor does and voila, instant masterpiece. He does teach basics which we can transfer to water color. In water color we are working on contrasting colors. But first you have to sketch your subject.  I've learned very quickly I have to observe the detail.  At least I've nailed shading. Lol. Brian on the other hand sketches very well. Hidden talent. :).  

Michael Jackson, "I Can't Help It". Written by Stevie Wonder. Love this song. We went to a meeting to get an explanation of what's going on with the agreements with the City's pension and the bankruptcy and it might affects us. I may go into it later. Let's just say some of the suggestions will be automatically litigated.  Some just made us say, "WTF?  Are you kidding?"   Ugh.  

Then of course I have dialysis Monday, Wednesday and Friday.  That takes up my time from when I wake up, 5 AM to when get home, around 11:30 AM.  We may be able to run errands after treatment IF I feel ok. Some days treatment just wears me out. We also have water aerobics.  Some days I can't even go to water aerobics because I am too tired from dialysis.  *sigh*. 

Kem, "You're On My Mind". There's also the packing.  That's a daily effort. I have friends who come over on the weekends to help. I am so thankful for them and their help.  It's made the packing and removal of stuff much less daunting!!  We do have a dilemma.  Lots of photos of people we don't know.  Lol. I can wrack my brain and name people I hadn't seen in 50 years, but I have no connection to them. Like mom's friends. She's gone and so are they.  What am I supposed to do with the photos? We also have a lot of cookbooks. Mom belonged to a cookbook of the month club or something. Lol. It's interesting to see the history of cooking.  The difference from the 50s, 60s and 70s and now. 

 I need to attend a memorial service this week. The youngest daughter of one of a friend and former coworker died suddenly over the past weekend. The funeral is the day before Mother's Day.  We had just talked a few weeks ago.  As a matter of fact, her husband was on dialysis.  That was the first time I had heard of dialysis. I'm thinking this was in the late 90's.  Anyway.  It just makes me wonder why I'm still here and this young lady is not.  My friend is a good friend. She is a good person. She was a great mentor to me when we worked together.  I will be there to let her know I care.  

On a lighter note, the oldest daughter of my namesake "daughter" is graduating and I've been invited to graduation activities. I'm going.  Baby girl got a scholarship Alabama State University!  I'm so proud of her and her mom. :)  

Well that's it for today.  I still have the NKFM zoo walk and I'm doing that. I need to go visit my Wendell.   I'm hearing he's getting better. I want to back to Honeybee La Colmena market. They have the best salsa and homemade chips.  Yumm.  Also to get some more chorizo to make Brian some more chorizo mac and cheese...with cojito cheese. Again, yumm!!!  Yes, yes, my labs were good. Remember, everything in moderation. :-)

Signing off with Average White Band, " A Love Your Own". So tomorrow it's gonna be 78 degrees!!  Eh, we're looking at the weather in Champaign and it's 20 degrees warmer there than here. Shawn apparently is down south.  Lol lol.  

Oh yeah . The links are to our NKFM Zoo walk progress pages. If you've donated, you will see that the funds have been applied. If you have donated thank you so very much for helping to fight kidney disease. Love you much!!  <3. 

Team Pat's Adventures - NKFM Zoo Walk Status.

The "It's Nice to See Daylight on My Way to Dialysis", edition.

iPad shuffled to Chicago, "Call on Me". Chicago's horns are so tight. The harmonies are great.  Volume got cranked up, I'm smiling and gently swaying in the chair.  "You love me too".  We've been making headway in clearing out the house.  It's moving quicker and we are on pace  for the move.   Looking at June.  The dining room is empty. It's so jarring walking into a completely empty room. The table, the china cabinet, the buffett, and the random music cabinet.  All gone. The china, glassware, stainless, table linens, table leaves, candles, assorted knick knacks.  All gone. Only thing left are photos and paintings on the wall.

Michael Jackson, "Butterflies". Floetry wrote this song and they also recorded it. I like birth versions. MarshaAmbrosious's voice is fabulous.  Shawn's room is almost empty. We have some random kid stuff like a Little Tykes rocking chair, some giant maps ( she liked maps ), a few stuffed animals, a table I had when I was a child(!), my grandmothers sewing machine, 2 footlockers and a few remaining books. I think Brian found close to 100 books in her room. Lol. And she'd moved a lot of books when she moved to Champaign. And I believe on our 2nd trip we had to bring her more books. Yes, she's a reader. We had to get her a floor to ceiling book case.  I digress. 

The Whispers, "It a Just Gets Better With Time". *Swoon*. Those cute little twins.  Lol.  The basement is almost empty. We still have the poker table, but that will go out the next time the "Junk Commander" comes back. Yep, my baby is gone my Honda CT 70. *Sniff*.  The furnace room is empty...and huge!  Lol. The laundry room has only the washer and dryer.  We got rid of one of the 3 desks and one of the desk chairs in the computer room.  Bags and purses.  Gone. Well except the purses I wanted to keep. Yes, I got rid of my entire Coach collection. Let someone else enjoy the vintage purses. Those puppies were 20 years old and older. :)

 Teena Marie, "Portuguese Love".  One of my favorite songs and my favorite by Teena Marie.  Love her voice. So this leaves us to the living room. Brian's aunt claimed the coffee table and end tables. She picked them up. All the rest of the furniture was removed on Saturday. Beware of the dog biscuits in the cushions. We discovered Jade stashed her doggie cookies there. Rofl. The lamps and paintings have been claimed.  All that's left is the piano.  And yes we have a buyer. The "piano" movers arrived Sunday morning. Yeah, after an hour the buyer told them to go. It started out alright, but it got pretty bad.  Like a really bad imitation of the Three stooges. ;-(  Let's just say the buyer will be engaging another company to move the piano. The good news is company didn't charge the buyer for that hour. 

Kool and the Gang, "Open Sesame (Part 2)". "I am the genie of sound. Everybody get down."  Lol. The song is an instrumental with the "genie" saying phrases or words every now then.  "Get on your camel and ride". Anyway, they have some of tightest horns you're going to hear.  I prefer Instrumental Kool and the Gang over the pop version.  However it shows just how versatile they are.  On the dialysis front.  First the really good news...with a small back story.  Friday, when my venous needle (top)  was pulled, I didn't put the pressure directly on the hole so the blood gushed out.  Nice puddle of blood on my arm, on the pad and running down my arm, on the pillow and down the side of the chair. Did I mention that they'd already taken six vials of blood...they take blood samples at the first of the month...I didn't have anymore to give. *rim shot*. Lol.  But I moved enough so that none of the blood got on my clothes.   So after all was done I attempted to clean up. 

I got most of it, but you just cannot see the back of your arm. Try it. You'll see. As I walk out I ask one of  my techs if I got it all off.  She said no and grabbed some wipes and got it off.  As she was wiping it off, a patient got my attention. It was old dude!!!!!   He's now on 2nd shift in another module. I was so happy to see him!! He let me know what happened. But he's back and that made me happy.  The other good news is my buttonhole access was back to working today!! Yay!!   

Signing off with Bobby Womack, "Looking For a Love".  It's a misogynistic, but it's the time period. Lol. "Someone to fix my breakfast and bring it to my bed".  And I can't be mad at Bobby.  :)  have a great day.  Oh yeah, I'm just now finishing up. Lost internet connection just as I was saving the doc.

The "I Feel Duped", edition.

iPad shuffled to  Brownstone, "Grapevyne". I've come to the conclusion that this song is a song that is calming to me. Another bad stick day. Not as bad as Wednesday, though. Fistula is fine and healthy and buzzing. However the venous access is causing issues. Clots are coming through.  Not a lot and they are small, but it clogs the tubing.  The staff wants to give the button hole to rest.  So I have a sharp needle in the venous today.  Ugh. We'll try the venous buttonhole again on Monday. Fingers crossed.

The Guess Who, "Undun".  1969. :-)   I saw that Skullcandy has headphones for women. I might try them. I love my earbuds, but they get tangled.  I use 2 sets. One for the iPad and one for the tv. Why?  My black Sony has volume control on the left side wire. If I use the black Sonys on the TV access, I have to hold the volume feature continuously.  I think they are better than the purple Sonys. Anyway let's see what the Skullcandy for  women do. 

 Jackson 5, "The Love You Save".  Lol. I start trying to the J5 dance routine when I hear this. I imagine several of my generation do the same. Lol. "Christopher discovered you're way ahead of your time".   Kidney disease is ugly. Dialysis is ugly. I've already explained there is no cure.  I've explained that dialysis and kidney transplants are treatments. I've explained the costs of dialysis drugs and transplant anti rejection drugs are prohibitive. I've explained that the government will subsidize the cost of anti rejection drugs for only 3 years post transplant. People cannot afford the drugs and go right back to kidney failure and dialysis...or won't even opt for a transplant.  I've explained that being on dialysis means I'm dying every day. I've explained that if there is catostrophic event like a tornado, dialysis will be unavailable. I've explained that each time I miss treatment the poisons build up. I've explained what happened to me when the toxins built up. The breakdown will happen much more quickly now because I have absolutely no kidney function. None. I may have 2-3 weeks to live.  

America, "Ventura Highway".  I've explained the National Kidney Foundation (NKF) helps to offset the cost of drugs. The NKF lobbies in favor of dialysis patients. Like stopping the proposed cuts in dialysis treatment or calling out drug manufacturers for the ridiculous costs of our lifesaving drugs.  My fellow patients are even having trouble getting life saving drugs while on dialysis. Did I tell you the drug that stabilizes my parathyroid cost me almost $500 for a refill?  Did I tell you that my refill for the phosphourus binders cost me over $700?  I had to meet a copay threshold before these drugs drop to 25% of the cost. Yay?  These are called tier 5 drugs. They are specialized drugs.  My blood pressure med is used by many more people so it's only $1.94. Hooray for running dialysis patients into financial hardships. 

Kashif, "Help Yourself to My Love".  So that being said and having explained this, I feel duped by my "friends" and "family" that they can't manage to donate anything  to the National Kidney Foundation.  Heck, even Shawn on her limited fellowship income is donating. $5 to $10.  In the end it seems to me that the message I'm getting is I know who truly cares.  

Signing of with Beyoncé, "Love on Top". Have a great weekend. Give to the charity of your choice.