The "Project Healthy Living Events Are a Wonderful Resource" edition

iPad shuffled to The Natural Four, "Can This Be Real".  1974.  In my chair for dialysis. Lady with the the big braid bun isn't here.  She wasn't here on Friday, either. I'm concerned. Also, the remote is missing again.  Why are we stealing the Comcast cable remote???   I'm stuck watching My Name is Earl. ;-(

Tevin Campbell, "Can We Talk". Still adding songs.  Brian and I were asked to represent the National Kidney Foundation of Michigan (NKFM) at a health fair at Bert's Place in Eastern Market. We agreed. That's all the information I had initially. I did some research and discovered the health fair was a part of the Project Healthy Living (PHL)  project. I found out this event goes on for several weeks at different locations in southeastern Michigan . The event provides health screenings and tests at a low cost.  There are too many tests to list, but it is sure is comprehensive and included blood tests, dental tests, hearing and eye tests. 

Cool Jerk. Lol. I immediately started chair dancing. "...cause they know I'm the king of the cool jerk". Our shift was 10AM to 1PM.  Our plan was to get to Eastern Market early and have breakfast.  Because breakfast at a Eastern Market means incredibly fresh food. :-)  We arrived just before 9AM. Eastern Market was already busy.  We scored a parking space about 1/2 block from Bert's. We then walked to Farmer's Restaurant on the south side of the sheds. After we ate, we headed back to Bert's.   It was getting crowded.  And it wasn't supposed to start until 10!   Parking is impressive at Eastern Market on a regular Saturday. This was going get crowded!  

We went in, registered as vendors and went to the vendor area. We passed several waiting areas for the attendees.  There were about 30 tables for vendors. We found ours and set up shop.  Vendors included Headstart, some churches, Blue Cross, several service organizations, Social Security and a massage station (!). This event was sponsored by Alpha Kappa Sorority and Zeta Phi Beta Sorority. (I wore the wrong colors - lol). So there was a lot of pink and green (my AKAs) and lot of blue and white (Zetas). A continental breakfast was provided for all of the volunteers.  

Steely Dan, "Deacon Blues". Nice and smooth.  Once the doors opened, we had the public and vendors stop to ask questions.  We didn't have the major swag that other vendors had to attract people, but NKFM did give us a bowl of candy. (We attracted our fair share of kids-lol). We let people know risk factors for kidney disease and gave them pamphlets.  We also encouraged organ donation by registering with the Secretary of State and gave out pamphlets for that. We answered questions about finding more resources and passed out the appropriate handouts.  Brian really got  into it and was pushing the NKFM fun walk at the zoo. :)

Some friends stopped by.  Ann liked all the information she reviewed and will pass it on to her church members. The lead social worker from my clinic came. She is a big promoter of prevention education...and my soror. And finally my friend from high school came (we were part of the a Fine Four-lol). She is a health care professional. She also has a niece who just received a new kidney. :)  Brian's cousin, a dentist, was one of the volunteer medical professionals doing screenings.  I also saw the daughter of one of my mom's oldest friends. :)  She was a vendor volunteer. 

The Dramatics, "Door To Your Heart".  So in addition to the myriad of health screenings, people were fed. Lunch was served.  Boxes of food were passed out to the participants (no, not the volunteers). I saw some of the contents of the boxes.  I saw 2 gallons of milk, a pound of bacon, and a huge roast.  Huge.  And that's only what I saw. I have no idea what else was in the boxes.   In addition, Little Caesars gave out medium pizzas, personal pizzas and crazy bread.  And of course lots of bottles of water.  And folks were getting the candy the vendors provided.  :-)

Aerosmith, "Dream On". Steven Tyler. ;-)  Finally, we had requests to attend other events to give out information on kidney disease prevention.  I will pass that on to the NKFM and let them know Brian and I are available to volunteer again. We enjoyed it. As always, my mission is to make sure no one has to go through what I went through.  And whatever it takes to avoid dialysis. 

Photos of me and Brian, my social worker, and my high school friend ( both of us in blue and white - I am not a Zeta, but I do like the colors!  Lol). Signing off with Vanessa Williams, "Dreamin'". I love her voice!  Go Tigers!!!! (Just stay away from Tiger Stadium today!  Lol) 

Project Healthy Living

The "You've Got Mail", edition.

iPad shuffled to The O'Jays, "For The Love of Money". I heard they didn't want to record this song.  They didn't like it. Lol. It's their signature song. I know we partied to this song the summer I graduated fro high school.  Besides, check out the bass. :)

I got mail this week. Snail mail. Email. UPS.  Let's start with UPS.  Brian and I go to water aerobics. My swimsuit has a skirt thing. I really like my swimsuit, but the skirt gets in the way of the exercises.  I also show a lot of boob. Lol.  I took a photo last summer to show my vascular surgeon me in the pool with the fabulous fistula he made.  However, I thought I looked like I was flashing him. Lol. Anyway I ordered a new swimsuit without a skirt.  I also have turned into a purse addict. I don't know where that came from.  Anyway. Macy's had a purse I wanted. Last week it was on sale and I was able to take 20% of the sale price!!  At that point, I was supposed to order the purse. And I did. So my package came on Wednesday. I wore the swimsuit to class on Wednesday. The purse is looking pretty in the closest right now.  Just wait until the weather gets warmer.  :)

 Guns and Roses, "Welcome to the Jungle".  Crank up the volume.  Lol.  I'm rocking in the chair.  On to email.  I received the request and confirmation from the National Kidney Foundation of Michigan (NKFM) to man The NKF booth at the Project a Healthy Liviing table Health Fair this Saturday at Bert's in Eastern Market. I wondered why we were asked.  The NKFM people met me and Brian during the peer mentoring training. I'm kind of taken aback that they asked us, but I guess we look like the volunteering type of people.  Lol. And yeah, I'm looking forward to doing it.  Lol. I must be so transparent.  I have a link about the health fair below. 

Teena Marie and Kurupt, "Ooh Wee". Love love Teena's voice. Snail mail. Wednesday I received my packet for the National Kidney Foundation of Michigan Zoo Walk on May 18, 2014.  The envelope was addressed to me and underneath was the name of the team, Pat's Adventures. :)   Next week I'll set up the web site so people can sign up. My Wendell has been very sick and he will probably not be able to walk, but he wants us to push him in his wheelchair.  I am so game for this.  Please join us. 

The Originals, "Baby I'm For Real". Those strings you hear are compliments of the Detroit Symphony Orchestra.  I recall seeing footage of the members of the DSO in the Motown recoding studios. :)  My final snail mail was a letter from the Detroit Medical Center, DMC, that my status on the transplant list is being maintained.  March 18, I had an appointment with the transplant team to evaluate my status.  I passed, I guess.  Lol. I was good.  I never missed a dialysis session, even when I was out of town. When I had to go to ER, I called the clinic and told them I'd be in when I got out. And I did show up...chock full of muscle relaxant and Valium (!).  When the peer mentoring was held on dialysis day, I made arrangements to go the next day.  When we went Florida, I scheduled my flight so I'd arrive home and would be able to dialyze at my center on the 3rd shift that day.  My labs were consistently good. (Except the bean incident and the pistachios incident - lol.  The dietician gave me a pass since I confessed). 

I'll have to repeat 2 tests, but that's nothing. The thing that puzzled me was I started the process to get on the list in March of last year. I was placed on the list in July.  In my mind, a year wasn't up. But you know what?  As long as I'm still eligible and still on the list. Yay!!!!

We'd like to see you at the health fair tomorrow and we'd love it if you join our walking team. Signing off with The Jackson 5, "Looking Through the Windows". Have a great weekend!  :)

Project Health Living Flyer

The "The Government Entitlement Lie", edition.

iPad shuffled to Al Green, "Call Me".  I am always and forever an Al Green fan.  Health insurance update. It's been an adventure since the Detroit emergency manager forced the retirees off the health insurance program.  I fell into the "you're fucked" zone.  Let's get a backstory going. I wasn't feeling well for over a year and was getting worse. Going to work was a painful chore. I decided to retire.  I had 28.5 years. The optimum length of work is 30 years in order to get the health insurance benefit. However, I was covered by my husband's insurance. His DPD plan was better and less expensive.  I'd been covered for over 20 years.

"Stay in My Corner",  The Dells. A classic.  Marvin Junior hanging on that note forever.... :-)   Once the City filed for bankruptcy, the City would not offer the health insurance. For those of us ineligible for Medicare, we'd get a $125/month stipend to offset whatever we were able to get from the health insurance marketplace.  Except I got shifted to Medicare, which covers End Stage Renal Disease. For the record, I'd have been shifted over to Medicare by my provider after 3 years anyway.  I wasn't eligible for the $125 anyway.  I had been on my husband's plan. 

I applied for Medicare. I was accepted almost on the spot for Medicare and disability, due to the ESRD.   Although I now understand the reason behind all the lawyers advertising for assistance getting disability...story for another day.  Medicare..the entitlement that "certain" politicians revile, pays for 80% of the medical care. That would be Medicare Parts A and B.  I'd be be responsible for at least 20% of $75,000.  The average cost dialysis per year.  Yay?  I have to pay a premium, because I'm not 65. But that is deducted from the monthly disability check. However, drugs are not covered by Medicare Parts  A and B. 

I need something to take care of that 20% difference...and drugs. I can purchase a Medicare Advantage Plan. Yay?  It takes care of the 20% difference and the drugs!!!! The Medicare lady walked me through the process. Then there was an issue which I never fully understood, but I eventually received the card. I am covered. And yes, there is a premium for that also.  The premium is also automatically deducted from the disability check.  That's fine. The good news is I have a disability check to offset these additional costs. 

The Stylistics, "Stop, Look, and Listen". Yep, I played this one the piano. It was too pretty to not to try.  I added my own embellishments. :).    So far all is well.  Until I fill prescriptions. The first one came back at a cost of $700.00 to refill. WTF?  Fortunately the pharmacy called me way ahead of me actually needing the refill.  I tell my social worker. There are programs to offset the costs. Guess what.  I'm not eligible because of our income. Another prescription gets refilled.  It comes back at a $13 refill.  After $700, we jump to get it refilled.  The final med that needs the refill comes out to $438. Another WTF?  

I call my Medicare Advantage provider. Here's the deal. The 2 astronomical drugs are "specialty drugs". Tier 5 drugs. Well yes.  They are for ESRD patients. Nice penalty there. >:-(   $1100/month to stay alive.  Well I have a little out.  Medicare, doughnut holes.  Blah blah.  Listen carefully.  I have $310 deductible on drugs.  (Just one of the two drugs will take care of that on 1 refill).  After the deductible is met, then I only pay 25% of the cost. Well, hooray for me. One drug drops to $109/month, the other drops to $196/month. Now my drugs will cost $305/month. Yay?  Well it is significantly less than $1100/month.  Once I've paid out of pocket costs of $4550, I get a reasonable copay. Check my math. That won't happen. 

Roy Ayers, "You Send Me". It's the strings.  It's the vocals. It's the arrangement.  Well I go back to the disability check.  That's what it's there for.  Thank goodness.  I think that when the enrollment period opens, I will review the plans.  I had to rush into this health insurance quagmire quickly and uninformed.  But betcha I know now and am learning more.   I will talk with my nephrologist this morning if we can switch to generics. The idea that I am paying these crazy copays boggles my mind.  At least I can afford it.  Here's the deal.  Your social security payments are commiserate with your lifetime earnings. Think about that. That kinda blows my mind.  Entitlements ... Really?

I'm at the point that I have to do what I have to do.  I'm good. Signing off with Kem, "You're On My Mind". All my double folks are here today. :-)   My stick went smoothly.   My watercolor class is fun. I have water aerobics tonight. Oh yeah, health fair at Bert's at Eastern Market Saturday, March 29, 2014.  Brian and I will be manning the National Kidney Foundation booth from 10 AM to 1 PM. Hope to see you there!!!

The "A No Drama Day...So Far", edition.

iPad shuffled to "I Can't Help It", Michael Jackson. Written by Stevie Wonder, from Michael's Off the Wall album. So pretty.  I found a YouTube video of Stevie performing the song.  I got sidetracked listening to Stevie's live performance.  Nice. :)  My weekend was uneventful.  Some people came by to see the furniture. I have takers. Yay!!!!

I finally took photos of our acrylic paintings.  Created in two hours.  We're going back.  :)  My dog is aging rapidly now. :-(  She has glaucoma.  We figure she can make out shapes, but she walks into walls.  A few weeks ago she heard the front door open. When she hears that she runs to see who's there.  This time she got up a head of steam and ran into the TV. :(   She'll still head toward the door, but won't run now. She also has arthritis.  When she gets up, it takes a moment to get the limp out.  She also gets coughing spells.  We're giving her lots of love. :)

Kool Moe Dee, "Wild Wild West".  I like the video in addition to just the song. Yes. I have his CD. And yes. I still prefer him to LL Cool J. Yeah. I said it. Quiet day on the dialysis front.  We've had enough adventures for a while.  There are only four of us here in the module this morning.  You know I get concerned when my module peeps are missing.  Big guy isn't here. He comes in late every now and then, so we'll see.  New lady with the big braid bun isn't here either.  Old dude came in with a wheelchair on Friday. I always tell him to be good. He laughs and tells me no.  Friday he said maybe he could be a little good. Lol. He has no wheelchair today.  I guess he was a little good for the weekend.  Young guy...although he may not be as young as I think...is here.  My partner is back, hooked up oxygen and taking off a sifgnicant amount of fluid. :(   Quit missing days. :(

On February 12 I wrote about a chair incident.  The offending chair is still off to the side of the walkway.  lol.   My first shift module is a (relatively) drama free module. Partner has gone ballistic once in a while. And the clinic itself is pretty quiet for first shift. But man, around 9:00 when second shift comes in, let the drama begin!!  At least my module.  There's this one guy that comes early and gets a little pissed because his chair isn't ready.  Well, if you come in a 1/2  hour later...your scheduled time...the first patient will be finished.  You won't have to stand there getting pissed because chair isn't ready. Geez. 

 Cranky lady #2 only wants to sit at certain stations and I see her point.  Her access is in her thigh. She needs the privacy curtains to get the stick. My station doesn't have the curtains.  But very now and then someone wants to put her here. She was asked about shorts, but got an attitude.  Lol. Wear them under the skirt or dress.  Oh yeah, she does wear pants. ...so yeah.  Then there's nice cranky #1 lady.  Some days she's fine. Other days she's at Defcon 1.  Run for cover.  Well her ire is directed at certain members of the staff.  

There are signs in the waiting area saying food and drink are prohibited in the treatment area.  Second shift comes in with buffets. :-/   Chips, Cheetos, Mountain Dew, sandwiches, watermelon. Notice these are foods that we shouldn't have.  They even have people delivering this stuff during treatment. *sigh*.   The staff attempts to enforce, but what are the consequences of noncompliance?   Bobby Womack, "Looking For A Love".  A little misongynistic, but consider the era.  Still makes the head bop. :)  Well, I did mention that people have other issues in addition to dialysis. 

Signing out.  I need to check my brackets. One year I won the office pool, thanks some Gonzaga wins early on.  Why did I pick Gonzaga?  I liked the name.  Lollololololol. Signing off with Nicole Henry, "Waters of March".  Nice jazz flow vocals with the piano.  And really. Waters of March. Appropriate title.  Enjoy your day. :) 

The "It Was Supposed to Be a Good Day, But....", edition.

.....here I am sitting in my dialysis chair oxygen tubes in my nose.  iPad shuffled to Roy Ayers, "You Send Me". Which is fine.  I'm not feeling like head bopping or chair dancing right now. I slept horribly last night. I had digestive issues.  When that subsided I woke up thirsty every hour.  I was desert in my mouth thirsty. :(   When it was time to wake up, I took Immodium.  There were no bagels.  I got toast w strawberry cream cheese.  :(   Toast, good. Strawberry cream cheese, yuck. I am a savory person.

Big Daddy Kane, "I Get the Job Done".  "... I work, baby".  I did the slow sleepy walk into the clinic.  My partner wasn't / isn't in his chair.  He wasn't in on Monday either.  So when he was here on Wednesday, he was on the machine for 4 hours, with oxygen.  He may have come in on other days.  I hope so. Anyway, I go to my chair, do my routine.  The tech hooks me up.  The machine did something funky. At the same time, I had a mild burning in my chest and I got warm.  At best all I can say I felt funny.  My breathing got shallow. I asked or oxygen.  I got it and I'm feeling better.   I don't like feeling like this.  It's always something, isn't it?  I almost passed on writing this morning.   Oh yeah. The pharmacy called and said my phosphourus binders now. It's $700.00 to refill.  :-O   I need to talk to my social worker and doc.  Adventures in dialysis indeed. 

 Grand Master Flash and the Furious Five, "White Lines".  So last week Brian and I attended an acrylic painting class.  You know.  Try something new. The last time I painted was when I was in high school.   And that was watercolor. For this class, all we had to do was show up.  All supplies were provided.   The class was fun.  We basically imitated the instructor.  We ended up with a nice fall landscape. The paintings look pretty nice.  Each one took on the vision of the individual student.  The instructor, Steve Wood apparently has had tv show...on how to paint.  Lol.  He was entertaining and engaged us.  We're looking forward to next month's class.  I'll take a photo of our work this weekend. You can vote oh whose landscape you like best. Mine or Brian's. ;-).   We also are in watercolor class.  Big difference from acrylics. I'm liking it also. I'm in the middle of painting a pear.  It's taking time.  Lol. For just a pear.  :-D   

Johnny Kemp, "Just Got Paid". Admit it, you sang this song on Friday...when you paid. Lol. Finally, last Saturday, we attended a surprise party for Brian's aunt.  Her 85th birthday!!  The hall was packed.  The Fields love a family get together.  With the exception of 2 of her siblings who've past, her other 5 were there.  Kids, grandkids, great grandkids, nieces, nephews.  Well over 100 people on attendance.  And yes, she was surprised!!   She made sure she spoke to everyone there and even did the hustle!!!  What a great time!  :)   The only Fields party that surpassed that was Grandmother Fields 100th birthday.  When I went to wish grandmother Fields happy birthday and remind her who I was, she cut me off and told me I was Brian's wife. Lol.  I also enjoyed seeing her sons, most of them senior citizens, dote on her.  Lol. :-)  When we got her thank you note for the gift, she said she bought a fur coat with the "gifts" she received!  

Well that's it for today.  I still have the oxygen tubes up my nose. But the machine has quit beeping.  My Wendell is back in the hospital, so I'll be checking in on him this weekend.  We gotta get him ready for the National Kidney Foundation Walk in May.  I have a few walkers and am looking for more.   

Have a great weekend.  Signing of with Beyounce, "Love on Top".  This is my happy song. :)

The "Transplant List Dance Redux. The 2014 Edition.", edition.

iPad shuffled to "Nights Over Egypt", Incognito.  I looked for the version by The Jones Girls, but I could only find a live version by Jean Varne, Sherelle and Shirley Jones.  I didn't like it. There were several versions listed.   I liked Incognito the best.  It's. Faster pace, but the voices rock!

Yesterday I visited DMC-Harper Hospital.   It was time to get the annual transplant eligibility test.  It was pretty much the same song and dance as last year.  I was interviewed by 2 nurses.  Asking the same questions.  Get blood samples.  At least they took only 4 vials, instead of 12. Lol. Of course I come to treatment today and my clinic wants some blood also.  Anyway.  We met with the same social worker as last year. Brian signs up again as my caretaker if I get a transplant. It was interesting to compare my answers to questions a year later. 

"Hey There Lonely Girl", Eddie Holman.  "...  no one can kiss your lips the way I will..."  He has a helluva voice.  Uh oh. The iPad is kicking out the jams. Followed Eddie Holman with Al Green. :-).  Back to the hospital. The final visitor is the transplant doctor.  The appointment paperwork indicates my appointment is with the doctor I saw last year, but I got another doctor instead. I must say that both docs were intrigued with my Acute Intermittent Porphyria (see link below). But this doc had actually treated patients with it.  However he has never done a transplant with an AIP patient. For the record, I haven't had an episode for at least 30 years.  But doc is aware and is prepared to make sure I wouldn't have an episode post transplant.  We talked about kidney issues and transplant in my family.  And how my diagnosis of porphyria connected the dots of the family medical history.  Remember, I have an aunt with AIP whose kidneys failed about the same time as mine.  

 The doc knows my nephrologist. He also knows my primary care physician. Seeing how there are a cartload of doctors in the metropolitan area, I'm impressed.  Anyway, long story short, I should continue my activation on the transplant list.  I do need to take a mammogram again and another pap smear again.  Apparently I'll have to take those tests yearly from now on. ;-(    At least the colonoscopy, endocardiogram, and stress tests don't have to be repeated....for a while. (No colonoscopy-yay!!!! Lol). 

"Fall in Love, Lady Love", The Dramatics. If I recall correctly, this was on the  "Whatcha See is Whatcha Get" album. I wore.that.album.out!!!   Doc also discussed live donation. This is optimal. Brian will start the testing process.  I had another potential donor, but doc said he was too old.  Apparently I don't want used up kidneys.  Lol. The potential donor was over 70. :)  I appreciate the gesture very much.  Doc also discussed paired donation.  That's where if Brian is not compatible . But the donor of another patient is compatible with me and Brian is compatible with that patient.  Of course we would then need a caretaker to take care of both of us.  If this arises, we'll figure out how to deal with it.  

"Door to Your Heart", The Dramatics. The harmonies are so tight.  Love it.  We spent about 4 hours at the hospital. Longer than we anticipated, but we've got nothing but time. Lol. Except we were scheduled to start our water color painting class. We made it. Lol. Water color is way different from acrylics.  I'll write about the classes one day soon. I still have the surprise party for Brian's aunt to write about. :)

Finally, Brian and I will be representing the National Kidney Foundation of Michigan at Bert's at Eastern Market on March 29, 2014. There will be a health fair.  Our scheduled time 10AM to 1PM.  Hope you drop by. 

Signing off with The Jackson 5, "Never Can Say Goodbye".  Check out the flute in the background.   Any suggestions songs I should download?  Let me know. Have a great Wednesday!!! :-)

Acute Intermittent Porphyria - AIP

The "I'm At The Mercy Of The Treatment Staff", edition.

iPad shuffled to Troop, "Spread My Wings".   I had a pretty good weekend. Coming off a week at dialysis where it was underscored that I am at the mercy of the clinic staff.  

Usher, "Yeah".  Wakes you up and makes you dance. Nothing Lil Jon hollering "YEAH".  Lol.  Ok. Being at the mercy of staff. I had never looked at being at dialysis in that light.  I'm not saying I was oblivious, but I was in the chair being treated.  I go in, set up my area. Get the earbuds for the TV and plug them in.   Get the earbuds for the iPad (I'll explain 2 earbuds later). Get my candy, blanket and phone out.  Fiddle around with the TV and cable to get the station I want.  Wash my hands and access  , then get into the chair.   

The Moments, "Look At Me (I'm in Love)".  Lots of strings.  Now it's time for the staff to do their job.  The blood pressure cuff is put on. Take standing and sitting pressure.   They wipe the access area with the alcohol swabs.  Remove the scabs on the buttonholes ... No it doesn't hurt me.  Although I guess it's painful to others.  After the scabs are removed, the needles are inserted, then I'm hooked up to the machine.  Now I'm held prisoner for at least 3.5 hours because even after time is up, I have to wait for someone to run me off the machine and take my blood pressure. After that happens, I get control back, because I can remove my needles. I had one tech attempt to teach me how to run myself off the machine but she never came back to my module.  I think I'll ask her one day.  That being said, there  are some techs who work with us when we want more control over our treatment. :-) 

The System, "Don't Disturb This Groove". Lots of synthetic sounds.  Stark contrast between the Moments, but it still sounds good.  :-)   So after all of that care what pissed me off about being at the mercy of the staff?  Not that it's been obvious as I observed the care and treatment of other  patients.  When the patients in the chair to the left of me change the channels on their tv, my channels are changed also. I'm in the middle of a news story, and the next moment I have an infomercial.   The patient is aware of it.  Once they're finished, the transfer of the remote needs to be done by the staff because, you know, we have needles in our arm hooked up to a machine...

Last week my partner and I asked a staff member to execute the transfer of the remote. She says to wait a minute while she tries to sign on to the computer. Ok. I can wait. Another staff member walks by and they strike up a conversation.  Then another staff member. When they finish, she runs off.  Comes back, calls a fixit guy to help her sign on. After 15 minutes (!). I ask a staff member passing by to transfer the remote.  The assigned staff member then says she was going to get it after she logged in.  I told her for all the time she spent not able to log in and having conversations, she could have walked 12 feet, got the remote and continued on her business.  We actually argued about this.  What?    Of course I don't like being at the mercy of the staff and then pissing them off.  I've seen where that goes. :-(

I'm not saying staff gets vindictive, but some patients are more difficult than others and the whining, fussing, yelling, cursing, refusing to follow the rules, demanding, etc. gets tiresome.  Yes I've witnessed the patients doing this. The staff on the whole responds professionally.  Some are able to address it better than others. ;-)    I'm not here by choice.  Compassion and understanding by those caring for us goes a long way.  If you work with us, the drama levels will decrease.  I know "we" get tiresome, but damn, we're on dialysis.  Maybe you should sit in our chair and see how'd you feel. 

I had a pretty nice weekend.  I'll get to that later.  For the hint, I went to a surprise birthday party!  Signing off with Run DMC, "Walk This Way".  Classic!   Well, at least most of the snow is gone. :-)

The "Don't End Up Like Me. Take Care of Your Kidneys", edition.

iPad shuffled to Jamiroquai, "Virtual Insanity". I like the song and the video. Yesterday was World Kidney Day (WKD). "WKD is a global health awareness campaign focusing on the importance of the kidneys and reducing the frequency and impact of kidney disease and it's associated health problems worldwide."  Objectives include highlighting risks, screening and transplant education and donation.

How do kidneys keep you healthy? Activate vitamin D for healthy bones. Filters waste from blood. Directs production of red blood cells.  Regulate blood pressure.  Keep blood minerals in balance. Regulate fluid levels. Hey, they do a lot to be such little organs. Well let's see how things are being substituted for me.  Vitamin D. I take a daily vitamin.  I take a super vitamin D supplement every 6 months. That one tickles me.  I also get a shot every 2 weeks at dialysis. For the record, most injections are given through the tubing, not directly in my arm. The exceptions were the flu shot and the  TB vaccination. 

"Funkin' For Jamaica", Tom Browne. The funk. I immediately start playing my air bass guitar.  :)  Blood waste filtration is done through dialysis. You know. A needle moving blood in and a needle moving blood in and going through the dialysis machine.  For the red blood cells I get an injection of Epogen during treatment.  Red blood cells produce oxygen. Blood pressure?  I take lisinopril, 60 MG a day. But during treatment, my blood pressure can fluctuate wildly.  Too low I pass out, to high threat of a stroke.  Blood minerals in balance!  Controlled by my diet....sodium, potassium, phosphourus.  Fluid balance?  Also controlled by me. 40 ounces of fluid. a day (just one Old English 800 malt liquor for me!  Lol). Includes things I drink and eat.  Like being mindful of fluids in fruits and vegetables and Popsicles!  

What problems can be caused by kidney disease?  Weak bones, cardiac arrest, stroke, nerve damage, cardiovascular disease, high blood pressure, anemia, kidney failure. What the risk factors?  High blood pressure, diabetes, family history, age 60+.  What are some of the symptoms?  Swelling, including hands and feet.  Puffy eyes. Increased thirst. 

I urge you to make sure you get tested the next time you visit your physician. You want to see your creatinine number.  It shouldn't be greater than 1.0  Remember, mine was 13.0. Yikes!! You also want to see your Glomerular Filtration Rate. This will tell you the efficiency of your kidneys. 

Chaka Khan, "And The Melody Still Lingers On (A Night in Tunisia)".  I hope you take me seriously and get your kidneys checked.  As much as I'd enjoy your company in the dialysis chair next to me, I wouldn't wish it on you.  I'm doing 10.5 hours of dialysis a week. So because I'm not getting 24/7 work from kidneys, in addition to dialysis, I taking a cartload of drugs.  Drugs at treatment and drugs at home. $$$$  Remember we lost Barry White and Luther Vandross from kidney failure.  Click on the link below. 

So that was rather serious and maudlin. But take the tests.  I'm good. Wednesday I got pissed at treatment with reality of being at the mercy of other people,  but that's a story for another day.  

Brian and  I took a painting class yesterday. We are now artistes!!  I'll put up the pictures next week.  And yes, we're going back.  :)  Signing off with The Jackson 5, "Maybe Tomorrow".  "You are the four seasons of my life".    Looks like we are getting one spring day this weekend!!!!   

 Know Your Kidneys

The "Realities of Dialysis", edition.

iPad shuffled to Parliament, " Give Up the Funk (Tear the Roof of the Sucker).  Intro to Funk 101. Yeah. I've written about my adventures in dialysis.  It's an adventure alright.  Not for the faint of heart. I had yet another tech stick me this morning. I have my preferences, but I'm open to allowing techs I trust try.  The guy this morning, I trust him. So of course he nails it.  I don't understand why some techs/nurses get it and others have such a hard time.  I have to have some level of trust because I travel.  I really need to get the courage to stick (cannulate) myself.

I've meant to mention that there was another death in my module.  The guy was on the 2nd shift.  Let me explain.  There are 3 shifts of 6 patients per module. I am on 1st shift, module 6.   1st shift starts at 5:30 AM.  I am the last person to get hooked up on my shift.  My time is 6:30 AM.  We run anywhere from 3 to 5 hours. I run 3.5 hours.  Being last in, I am one of the last off.  Big guy across from me is 4-4.5 hours.  He's on when I arrive and still on or just getting off when I get off. (Lol. That didn't sound right).  Anyway, 2nd shift patients are arriving and being hooked up while I'm still dialyzing or coming off.  This has allowed me to get to know the 2nd shift patients as well as my first shift comrades. 

The Dramatics, "Be My Girl".  2nd shift is the drama shift, if you know what I mean.  Lol. Anyway, there are 2 older gentlemen with similar names. Both have had strokes and are pretty low key.  One had been gone for a while late last year, but he was back after the first of the this year.  Then he was gone again.  I asked how he was doing? I was told he died the previous Friday. :-(  I told Brian that neither older gentleman, nor sweet old lady, who died earlier this year,  looked any different the last time I saw them.  One day they were here. The next they were gone.  Their chairs were reassigned and we go on.  

Soul Survivors, "Expressway to Your Heart". "At 5 o'clock it's much too crowded." I just found out they were white guys!  Lol. Well, it 1967 and I was listening to the radio and has just started buying 45s.  A couple of others in 2nd shift have medical issues in addition to ESRD or caused ESRD.  Diabetes and lupus are not uncommon with the patients. In addition there are heart problems, amputees and a higher prevalence of cancer than I would have imagined.  And there probably more medical conditions than I don't know. This affects attitudes and I understand why some patients are...testy. Here I have to be careful about the info.  Patients have shared this info with me, but I don't and won't identify them. HIPAA.  I'm not clear that as a patient if I am bound by HIPPA, but I'd like to respect the confidentiality of my fellow patients.  Everyone is not an open book like me. 

Today I am having a review which includes my team: my nephrologist, my social worker, my dietician, and the head nurse.  I had to take a "test" which measures my acceptance of ESRD. I took it last year and thought I was dealing with it pretty well.  Lol. I apparently wasn't dealing with it as well as I thought.  A Pat bubble, I guess. Lol. We'll see the results of this years test soon. I think I'm more realistic this year.  I think I didn't have to process it as I was dealing with the death of my mom.  Now that it's a year later, I'm dealing more with mom, dad is settling in, Shawn is off to school Brian and I can exhale. I'm also more realistic about ESRD.  My kidneys are done. They will not recover.  I probably will not get a live kidney donor. I will have to wait for some time to get a cadaver kidney.  I will have addition medical problems, associated with ESRD and dialysis.   I can accept that.  I also know what to do to minimize a lot of risks and I learn more everyday.  

Kool Moe Dee, "Wild Wild West". ;-)  20 year old rap. Lol. No shame.  Yes sometimes I get depressed, but I get pulled up by my friends and family and then I'm looking for a new adventure.  Like we're going to give ballroom dancing a try.  Or finding my next trip.  Or moving to Vegas. Or building a team to walk with me for the Nation Kidney Foundation. Or helping plan our high school reunion. Or finding new recipes.  Or going to Denver for a wedding.  I'm really looking forward to that. Never been there!!!  Yes, there are some sobering realities, but I'm not rolling over.  Apparently I have to much too do, despite ESRD. :)

Signing off with Whitney Houston, "I'm Your Baby Tonight".  4-7 inches of snow today.  Really?  It was 50 degrees yesterday. ;-(  lol. People haven't been able to get their Christmas decorations down.  Lol.  Have a great day. Tell your local robins it'll be be ok soon. :)  

World Kidney Day 2014

The "Peer Mentoring and Empathetic Listening", edition.

iPad shuffled to Sam and Dave, "I Thank You".  Stax music.  Thumbs up. The module has had the remote control for a while.  I guess they caught the theif who liked Comcast remote controls. (What?).   Greenfield Health Systems had the quarterly meeting for the peer mentors. Four of us who were trained last year were there in addition to others who have been identified for training.  We represent the different dialysis centers in the metro detroit area. Getting a room full of dialysis patients is interesting...and predictable.  Everyone wants to tell their story.  Lol. The introduction script calls for name, dialysis center, and why you want to be a mentor.  It goes off the rails at the last item. I guess I lose my empathy when 10 people go on and on. I need to fix that. But they go into such detail :(   I told Brian they need to write a blog.  I was being bad.  I'm so sorry.

Gold Digger, Kanye West featuring Jamie Foxx. Liked it first time heard it.  I also get distracted when the mentors start testifying and witnessing.  We're here for peer mentoring topics, issues and training.  They are also not aware or don't care that everyone is not Christian or their brand of Christian.  Some people like to keep their religion, faith or spiritually private. This attitude can cause issues when you mentor. If the patient is Muslim, Hindu, agnostic or an atheist or anything else and the first thing that comes from the mentor is a Christian platitude, you've lost the patient.  Your mentoring is useless.  Right off the bat, you haven't even listened.  You've assumed.  If the patient brings up religion, that's fine.  But the mentor cannot.  Mentoring is all about the patient. 

Isaac Hayes, "Never Can Say Goodbye".  That voice. :)   Back to dialysis patients sharing stories. I get it. And who else is going to understand ( and empathize ) more than fellow patients.  We get it.  But listening to bunch of them, lasting for 10 minutes, is tedious.  I give credit to the social workers, though. They let them (us) go on.  My facilitation and manager skills kick in...let's move this along.  Perhaps we need to schedule a separate session just to talk and vent and share.  This meeting is not the platform for this.  So hard to hold my tongue.  Lol. It is not my meeting.  Stay on the agenda!!!!  I'll fix my attitude and will attempt to try not get so annoyed next time!

The Sugerhill Gang, "Rapper's Delight". Long version. I remember when and where I first heard this.  Lol.   World Kidney Day is this Thursday.  The idea is encourage kidney health awareness and organ transplant awareness. I'll continue to post the kidney health quiz through Thursday.  Also the National Kidney Foundation - Michigan walk is Sunday, May 18, 2014, 8:30 at the Detroit Zoo.  

Last year my team, Pat's Adventures raised over $400.00. Four of us walked, including my family and my friend Mike. I'd like to have more people join me walking this year.  Please consider joining me.  They feed you and have a lot of "swag".  (An attempt at bribery.). Check out the link for more information or contact me.  The admission to the zoo is free and you are free to enjoy the zoo for the rest of the day after the walk.  :)  Last year I used a cane. This year I'm cane free!   Hope you can join us. 

I'm getting great joy watching the snow melt. It's been here since at least January 6 (the 10 inch blizzard ). Signing off with Ramsay Lewis with Earth Wind and Fire, "Sun Goddess".  Still good listening. :)

Michigan National Kidney Foundation Walk

The, "I Don't Have an Infection. Whew", edition.

iPad shuffled to Steve Miller Band, "Abracadabra", "I wanna reach out and grab ya'". Lol. That's what I say when Brian walks by. Lollololololol.  Ok I don't have an infection. It's "just" contact dermatitis. I have a gnarly photo of it. I'm gonna show you. So I have to detail my starting routine to show how I ended up with this.  Of course there will be extraneous details, but it's all about my adventures in dialysis. ;-)

"Get on Up", The Esquires. "How can you rest, when you know I'm trying my best, to dance with you, girl". The clinic is in the lower level of a medical building. (I call it the dungeon. No windows)   I enter around 6:10 AM. There may be other patients being dropped off.. In cars, taxis, transportation services or even ambulance transport services.  I walk in the building, greet the security guard, take the elevator to the lower level.  I stop at the water fountain, get a sip of water...along with every other dialysis patient. That fountain is like a pool of water in the desert. Lol.  Go into the reception area.  No staff is in the front  because it's early.  

The door to the treatment area is locked. Or some days it's left open. But it's "supposed" to be locked and we're not to enter until someone gets us...but no one is there to let the techs know we're there. Sometimes a nurse is there doing paperwork and will buzz us in. Sometimes we'll bang on the door.  They eventually put a phone in for us to call the module....but sometimes no one answers because early first shift staff are busy...but that's a story for another day.  

Anyway, I get in the treatment area, go to my chair and put down my stuff. Go weigh myself.  Come back and take out my blanket, iPad, phone and bag o' candy/headphones/tourniquet. Plug up one set of headphones to TV cable.  And make sure my chair is plugged in...so I can Then I find who has the remote and get the TV set.  Then I go wash my hands and my access area.  The tech takes my standing blood pressure.  I sit and the fun begins!  I make sure the correct needles are there. The tech swabs my arm with a pad that is 70% Isopropyl Alcohol and 3.5% Cholhexidine Gluconate (one of the culprits). On Wednesday, when that was applied, it felt like I stuck my arm in a bonfire. :-(   The tech then uses a sterilized implement to remove the scabs from my button holes.  Inserts the needles and secures them with paper tape ( the other culprit ).  

Now the reaction of my skin is new.  The combo of the swabs and paper tape was fine until the last week or so.  My skin just  said F-U.  The burning, itching, oozing and scabs made a dramatic appearance.   I now have a super special sticky cloth tape ( because I'm that speshul snowflake ).  And prep with straight up alcohol.  Doc had me use a combo of neosporin and cortisone to clear up the rash. It's working pretty quickly.  The tech still had problem finding my button holes with all that redness and crustiness, but she got it. :-)  "Love or Let Me Be Lonely", The Friends of Distinction. "I could live without love if I wanted to in this lonely room".  Hopefully it'll be gone next week.  Never a dull moment here.  Lol. 

Yesterday I had lunch with Carmen, my partner in crime from college.  Got lots of (tellable) stories. But for now I am so glad we got back in touch.  As she said, we never missed a beat. :)  We'd been trying to get together since October 2012.  I kinda caused a delay.  The beauty of Facebook is once you find someone, you stay in touch.  Or not. Lol. You know what I mean. ;-D.  

Signing out with "Door to Your Heart", The Dramatics.  Hey. They've been hiding recently. Come on out guys!!  What's this about music meaning nothing to people?  That's just a sad face. Anyway enjoy your weekend.  40 degrees today!!!!   Oh yeah, I have a mentoring update this weekend.  

The "Uh Oh. I Have an Infection", edition.

iPad shuffled to "The Jam", Larry Graham and Graham Central Station. Starring Larry Graham's bass. Funk. Oh man. I have an infection around my access.  It itches.  And I can't do squat about it. I have needles there, and it's covered with tape...which hold the needles in place.  Itchy. Itchy. Itchy. :-(   As of today we've had to change the antiseptic swab used before the stick.  And change the tape. I'm gonna have to suffer through 3 more hours of itchy.  Good thing the doc comes today.  "My name is Larry Graham and they call me...".   The charge nurse gave me some ointment to use at home.  Itchy. We'll see what doc says when he gets here.  That's still about 1.5 hours from now.  He gets here sometimes as early as 8:30 AM.

Thursday, March 13, 2014 is World Kidney Day.  Get a blood test to determine the health of your kidneys. Make sure you know the signs and symptoms of kidney disease. Make sure you know the risk factors of kidney disease. Sign up for organ donation. Eat foods that are kidney friendly. Drink water.  Make sure you know the function of kidneys.  "What's My Name", Snoop Dogg". Heavy on the bass..funk. Itchy.  Lol. My head started boppin'. 

I've discussed some of our meals. Foods I can have and those I shouldn't. I've found I can have most in moderation. The high phosphorus foods are the ones I miss the most.  Except beans.  Beans make my phosphourus go up and stay up.  No beans for me.  I can still have other foods in moderation and IF I take additional phosphourus binders. Those big mega pills. I normally take 3 with snacks and 4 with meals. If I have a little chocolate or cheese or nuts I'll take more. Look, I take 10-12 of them per day.  When I refill the prescription, I get 2 bottles of over 1000 pills every month. Every time I eat, I have to take my binders.  My kidneys can't process phosphorus. I carry a pill case full in my purse.  Too much phosphourus causes brittle bones and heart issues. And itching. Ugh. Itchy. Lol. 

Vanessa Williams, "Dreaming'". Isn't her voice nice?  Isn't she still gorgeous?  No hatin' from me. :)  So back to our meals. First of all table salt has been eliminated. And it's mostly been limited from cooking. I never thought that would happen.  Had some Triscuits. OMG, so salty. Same with Pringles. The itching is subsiding.  But then my head got cold.  Don't ever think sitting in dialysis is a relaxing thing. If you say that to me I'll growl at you.  Back to meals. I made a sausage and chicken jambalaya this week. No salt added. We figured there was enough in the tomatoes and the smoked turkey sausage.  Even when we cooked the chicken thighs, they were just seasoned with paprika. Teena Marie, "Ooh Wee". That's a voice that is incomparable. Love love it.  The jambalaya was delicious. Yum.  With no added salt.  Itchy. 

Brian want me to fix the seafood chowder again.  I've eliminated the bacon. I can make shrimp stock, I cut out the potatoes. I do use the cream, but a serving of chowder does not use a serving of cream.  However, I will still add 1 additional binder.  And I need to be mindful of the fluid intake.  Oh yeah, I put in shrimp, clams and crab. Yum.   We also have a recipe for baked breaded buffalo wings. Tasty!  We serve it with carrots and celery rather than fries. And yes, I take those binders every time.  Not as itchy, but still itchy. 

Do you have any recipes or meals that can fit the parameters of a dialysis diet?  Low sodium, low potassium, low phosphorus, high protein, no whole grains ( yes whole grains are bad ). Remember I said "low", not "no". Lol. 

Signing out now, thinking about breakfast. I like my eggs over medium!  Seal, "Kiss From a Rose".  So pretty. 30 degrees soon?  It'll feel balmy. Lol. 

Know Your Kidneys

The, "Final Installment of the Champaign Visit", edition.

iPad shuffled to War, "All Day Music". How soothing is that?  Lol. Makes me want to close my eyes and imagine laying in the grass with the sun just beaming down on me. :)  I have more photos of our little trip to Champaign.  Mostly of the grandcat and of the train ride. It amazes me when I get off the train and realize just how massive the train is. Climbing in and out of train is a challenge.  Heh, one of those things that can still stump me. My problem is trying to hoist up myself and my bags. The conductor takes  the suitcase. A conductor was at the top of the stairs. He grabbed my arm and hoisted me up.  Lol. Yes, I thanked him.  Conductors rock!

Another train was even more of a challenge because there was salt, a lot of salt in the stairway.  I have to  use my upper body strength to hoist myself up the strairs. I saw a lady using a walker. I don't know how she was able to board the train. I'm sure the trains are accessible.  I just don't know how. I didn't identify as handicapped.  I didn't see the option when making reservations, and I'm much more mobile anyway.  When I'd get in Chicago,  off the conductor at the bottom would also help me. He also called for a redcap ( the guy driving a little passenger cart ) to take us right into the station.  

I didn't request an accessible room at the hotel for the first time in years!!!!   The primary reason I'd needed an accessible room was for the toilet. I needed the extra height and bars to pull myself up.  I distinctly remember the first time I realized I needed "toilet assistance". That moment when you go "WTF?".  We were on the way to pick up Shawn from Howard.  We stopped at a hotel in Breezewood, PA.  I went to the bathroom. I couldn't get up. To make matters even worse, the sink was far enough away from the toilet that I didn't have anything to use for leverage.  :(  "Sideshow", Blue Magic. Heh, Brian trying to help me up probably was a sideshow. Lollololololol.  That was spring 2010. Possibly the early stages of kidney failure. Who knew?  So anyway, I can make do without an accessible room now!!!  Yah!!!  Low seats, couches and chairs are still a challenge, but they are doable. I don't need help. :)

Ugh. It's cold in here. I have my blanket and heated seat.  Gonna put on my hat soon. Try putting on a skullcap with one hand. I think I've mastered it. Lol. Just one of the skills you master when you're on dialysis. ;-)  I had 1 dialysis treatment while in Champaign. The communications tickle me. I'm at dialysis in Detroit and get a call from the Champaign clinic letting me know the have a 2:30 PM chair time for me on Monday. I'm fine with that. Just as long as I have a time. As soon as I hang up,  my social worker relays the same information. Lol.  Saturday, at the layover in Chicago,  Brian gets a call from the clinic saying a 10:30AM time has opened up. Cool!!  I have no idea why he got the call. Lol. 

Rachelle Ferrell, " With Open Arms". She is the only one who can get away with vocal gymnastics. She makes it sound good. She has the range to pull it off.  I get to the dialysis clinic in Champaign. Its  a small center. 12 stations. The techs and nurses remember me and remember I'm from Detroit. I'm glad I leave such a good(?) impression. While there I meet the nephrologist. That was a first for any of my travels. We talked...I wonder if I get charged for that?  When it's Time to get off the machine,  I'm feeling weak. I weeble wobble out of there, convincing the staff I'm good.  Geez I was tired.  We left there.  I was hungry. We got Popeyes chicken. (My baby said she wanted some).  Apparently Popeyes had just opened in Champaign.

After we ate it was time to cook some meals for my child!  However, The best I could do was lay on the couch and give instructions to Brian.  He made the greek pasta salad.  He also did the mise en place for the red beans. ( Mise en place.  I watch too many cooking shows. You can look it up-lol).  I cooked the beans. Shawn could make her own rice.  Lol.  After cooking, I was ready to back to the hotel. I was sooooo tired. Tired like I'm not sure I'd ever experienced that level of tired. We got back to the hotel and I crashed. I slept for 10 hours.  Understand that since my kidney failure, I'm lucky to sleep longer than 4 hours a night. It was a good sleep. 

The train stations in Chicago and Champaign make the Dearborn and Detroit stations look pathetic. Both Illinois stations are transit centers, so it's not just Amtak. Dearborn is building a new station. We will do Amtrak again. I liked it. 

Signing off with The Tavares, "Check It Out". Photos of train ride.  Beat down of the groundhog 2 weeks from now if were still in a Polar Vortex. :-/