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Tuesday, January 31, 2017

The " Part 2 - Two Years on Home Hemodialysis", edition.

Good Tuesday morning!  Eh I felt punky on Friday and opted out of deep water fitness. I felt off yesterday also, but I got into the pool. It was a good decision. I felt better once I was in the water. It was marathon day...workout routines followed by increased timed nonstop swimming, culminating in a five minute nonstop swim. Whee!  I didn't push myself, but I felt good. Alas, I ate something that disagreed with me last night. Ugh. It caused me to miss treatment. Feel much better today. And it's personal trainer day. Afraid to eat anything. But the work out should be fine. 

So I'm completing my 2nd year doing hemodialysis at home. The first 2 years I did dialysis, I was incenter. You pass dialysis centers every day. Just look for the DaVita signs. It's a dialysis clinic. Doing it at home was the right decision.  Dialysis at the centers is a business and the process is to get the patients in and out as quickly as possible for more patients to get in. Make that money! Unfortuneatly this is at the expense of the health of the patient. Quick hard dialysis 3 times a week is a shock to the  body, specially the heart.  Each. And. Every. Time. Home hemo is gentler on the organs and more frequent. And the mortality rate is longer. Average life span on incenter dialysis is 5 years...average is the word though. People have done incenter for decades. A lot of has to do with being compliant with diet and taking medication. Anyway. 

We get a lot of equipment delivered because of the home hemo. But we've adjusted. And we travel with the "portable" kidney. I've written about our trips. The clinic and staff work with us. I go monthly to meet with the nurses and nephrologist and dietician. If there are issues, the nurses contact me. And Brian. Wow. I can't begin to tell you how much he does. I couldn't do this without him...and his helicopter hovering. I get the hovering though. I've passed out enough times that he keeps an eye on me. And yes. Sometimes it's annoying. Ah well. I need to add that my care team is fantastic. 

Well where are we today?  I've had a really bad reaction to an important medicine. A medicine that regulates my parathyroid gland.  Unfortuneatly it is the only medication that regulates the parathyroid. So now I need surgery to remove the gland. I opted for ablation, a noninvasive surgical procedure. I'll make an appointment with the endocrinologist this week and get this party started. I'll have more info on this later.  Minor rant--- I had to wait for the referral and HMO approval. Ugh. 

That's it for today. I'm chugging along. Good days and bad days. More good. I push until I can't. Brian pushes me also. I haven't been down the rabbit hole in a long time. But when I need to crash, I need to crash. And finally the weather. It was cold last week...snow on all of the mountains. I needed a heat. But this week?  Sunshine and mid 60s. Loving it!  

My setup for home hemodialysis and some, yes just some of my supplies. 

The set up. I use all of this stuff to prepare for treatment. Alcohol pads, betadine pads, heparin in the reduce blood clots, syringes without needles which attach to the saline bag, a syringe with a needle for the heparin and finally the needles I insert in my arm..the ones that have 15G printed on them. 

What my needles look like. Yes, I insert 2 of these in my arm every time I do treatment. One for an arterial access (blood out) and one for venous access (blood in). The needles are blunt because I use "buttonholes". Think pieced ears.  No pain. And all meds are introduced through the venous access needle. Any questions?  :-D

Sunday, January 29, 2017

The "Southern Nevada Alpha Kappa Alpha Founders Day", edition.

Good Sunday morning. Alpha Kappa Alpha Sorority, Inc. (AKA) was founded in January 1908 and incorporated in January 1913. The sorority celebrates the Founders' Day in January. This is my second year celebrating in Las Vegas with Theta Theta Omega (TTO). This year was a joint celebration for the chapters in southern Nevada. Last year's Founders' day may have been a joint effort also, but I don't recall. I do know that last year the keynote speaker was Soror Dorothy Buckhanan Wilson, International President of Alpha Kappa Alpha Sorority, Incorporated. And because Soror Dorothy was the speaker, the luncheon was huge. We had sorors from all over the Far Western Region which includes Alaska, Arizona, California, Hawaii, Idaho, Nevada, Oregon, Utah and Washington. This year's celebration was much more intimate, but was just as nice! 

I mentioned it was a joint celebration for the southern Nevada chapters. Sounds like a lot doesn't it?  There are 3 chapters in southern Nevada. Nevada is really a sparsely populated state. Anyway. The 3 chapters are the Las Vegas chapter, the University of Nevada Las Vegas chapter and the Henderson chapter. Henderson is  a city south and east of Las Vegas, bordering Las Vegas. I wouldn't call it a suburb. This year the Hendserson chapter sponsored the luncheon. As with any new place I have to go, Brian and drove to the location a few before so I knew where I needed to go. The good news is that our landmark was a pool we'd gone to earlier last year. 

We were instructed to wear pink or green, no slacks, and our favorite AKA pin or broach. Ack ack. I needed to get a dress. Lol. I need to fill out my AKA wardrobe. Anyway I started looking before Christmas and found a dress. A nice dress. And I needed a pin. Remember, I hadn't been active in over 25 years. And I didn't have a lot of pink...or green. I found 2 pins that I liked. So I ordered both!  And finally I didn't need shoes, I wore the beautiful black suede boots that I wore last year..which went nicely with my pink dress with the wide black belt!  

I arrived at the event and was checked in. No tickets. Oh yeah. Did I mention that the event was sold out?  Anyway. Got inside and so much pink and green. And it felt good!  We looked good! And I enjoyed looking at the shoes. Lol my sorors can rock some heels. I can't, but I can admire their shoes!  We all looked good. And the sorors!  Golden Sorors which are sorors who have been AKAs for 50 or more years, sorors who were just initiated in November and our undergraduate sorors from UNLV. 

We had the greetings from each chapter and a history lesson from the 22nd Far Western Regional Director and member of the Las Vegas chapter, E. Lavonne Lewis.  Our keynote speaker, who did not disappoint was a local Soror who is graduate of HBCUs, including a PhD from Florida A&M and is the Clinical Mnager of Pharmacy at a local hospital. And finally the chapters awarded outstanding sorors from both graduate chapters. I met sorors I hadn't met before and enjoyed being with my sorors, my sisters. 

Unfortuneatly the kidney disease side effects set in. The banquet hall would get stuffy and all of us had perfume on. We smelled good!  But every now and then I'd get overwhelmed.  And during the standing parts I'd get light headed. After the awards but before the end of the luncheon, I sent Brian a text to come and get me. I really didn't want to pass out there. That would have put a damper on the celebration. Heh. And of course, I got home and fell asleep. Ugh. I hate this. {cry}. 

I did have a great time and I am always going to try and make as many events as I can. I am active on one committee. I signed up for another one. And the chapter will be hosting the Leadership conference this summer, expecting 10,000 sorors...all hands on deck!  And yep. I'll be doing stuff for that. I'll keep on pushing through. I can't help it. But when my body says stop, I have to stop. 

Have a wonderful day. Today the sun is shining and the weather is warmer. Although I understand my idea of cold has shifted since I moved out here! I had to wear a hat!!!! Sorry. :-)

Photos of luncheon, thanks to my sorors. Yes there are photos of me floating around. I'm sure they'll pop up eventually. 

I ordered these 2 pins. I wore the 20 pearls. 

Soror Celeste and Soror Kim, Basilues and First AntiBasileus <3

Soror Lewis, 22nd Far Weest Regional Director. 

Nice cake!  

Saturday, January 21, 2017

The "Two Years on Home Hemodialysis", edition.

Good Saturday morning!  Heard "Too Late", by the Tavares yesterday, so I'm on a Tavares kick. Anyway. Brian and I started training for home hemodialysis January 2015. I became interested in home hemodialysis the spring of 2014. I opted not to train at that time because we knew we'd be moving from Detroit to Las Vegas soon. I did attend info sessions. I've told you before about the different modalities (types) of dialysis. I started out with emergency dialysis with a catheter inserted in my groin. Yeah. That wasn't fun. Then I got a catheter inserted in my chest and was off to in center dialysis. I eventually got an AV fistula in my left arm..I insert needles in an arterial (A) access and a venous (V) access. 

During this time I was also talking with my friend Wendell who was doing peritoneal dialysis (PD)..a tube inserted in the stomach.  And he came very close to convincing me that was the way to go. He had an aversion to needles. Lol. Anyway. He had me over to show me how PD worked. I asked questions and even had a consultation for the surgery to have the tube inserted in my stomach. Ugh. I finally backed off the PD because it seemed that I wouldn't be able to swim. That just wouldn't do. As an aside, Wendell ended up with encapsulating peritoneal sclerosis. It killed him and it was a side effect of peritoneal dialysis. So yeah. I passed up on that option. 

Flash forward to me moving to Las Vegas in July 2014. My center here wasn't as nice as the one in Detroit. It was a corporate owned center. My Detroit center was not for profit and the care and resources reflected that. Anyway. My first day doing dialysis in Las Vegas I met my social worker. And almost the first thing she asked me about was ..was I interested in home hemodialysis. I about jumped out of my chair..needles and all and said yes!  She said it would 6-8 weeks. It took 6 months. 

First day back after th Christmas holiday  I get a call that the home hemo nurse will be stopping by the condo to check it see if it would be ok for home hemodialysis. I get to dialysis the next day and my tech tells me it's my last day and my chair and time have already been reassigned. What!?!  I got pissed. Somehow I thought I'd be doing in center dialysis while going to the training center. That happens when no one explains "things". What really happened was I reported to the training center the following Monday and started learning how to use the home hemo dialysis machine..doing treatment during training. Duh. 

Training lasted 4 weeks. Brian learned what he needed to do..and now it's almost second nature. I learned to stick myself with needles. A lot of people get real scared  about that, but it's not bad. The closest I can describe is like getting an IV stick.  But it doesn't hurt. But people just have needle phobias I guess. However, by inserting my own needles I decrease a lot of issues. Heh. The second day the nurse hands me the needle and tells me to stick myself. I was so surprised that I took the needle and stuck myself!  Talk about a nonissue! Lol. And with that we were on our way to doing hemodialysis at home!  

That's it for today. I will continue this in the next entry. The weather is nice out here. Not on the evenings. Snow on all the surrounding mountains. We can actually see it snowing on the mountains, while the sun is shining in the valley. Tomorrow is supposed to be windy and rainy. Brrrrrr. 

On the dialysis front, I had a crash episode on Wednesday. I HATE those. I feel like I'm dying and can't do squat about it. Brian comes through by pushing the saline into me. The crashing happens when too much fluid is removed during. So, the solution is to replenish me with saline. 200-300 milligrams usually fixes the problem but still. And yes. I feel it coming on. I get hot, clammy, light headed. This time my chest hurt. I breathe very deliberately. And I have enough time to let Brian  know I need that saline. Hubby comes through like a champ. Never panicking. That retired Sargeant thing comes in handy! 

Anyway. Take care. Enjoy the day. 

This is a few days after the chest catheter was removed in 2014. The scars have mostly healed. 

This is what the catheter looked like inside of me. And yes those clips were attached to me outside of my body. 

Monday, January 16, 2017

The "Back to The Routines", edition.

Good Monday morning!  Today is the celebration of Martin Luther King. Apparently Las Vegas has one of the largest parades in the country. My AKA chapter, Theta Theta Omega, participates in the parade. This year we got some pretty spiffy cardigans to wear and my sorors will be marching and stepping and riding in a classic car. No. I am not participating or even attending. Walking would be way to much of an issue. And parking and walking and standing to watch the parade would just wear me out. I'll be supporting my sorors!  

Shawn made it home safely. We were concerned about the ice storms in the Midwest. The flight from Las Vegas to Chicago was uneventful. The flight was 3 1/2 hours. But then she had to wait 2 hours for the shuttle to Champaign/Urbana..which is. 2-3 hour ride. It was a long day for her. We woke up at 3:30 AM our time to get her to the airport for a 6AM flight. She arrived at her home around 6-7 PM central time. Haven't talked to her since she got home but we've texted. I'm pretty sure she was recovering yesterday!  

Other activities we did while Shawn was here was go to our trainer. Gaylynn graciously created a training program for Shawn. It was fun watching Shawn and Brian doing their workout. And Gaylynn sent Shawn off with a program and her phone number. We saw Hidden Figures and loved it!  Took Shawn to some of our favorite restaurants. Visited the book store. Played games. Cooked together...just generally had a great time and enjoyed family time. I got Dad a portable CD drive for Christmas because his all in one computer didn't have one. Shawn hooked it up for him. They then found a cd of photos Brian had made from all the photos we found and saved in Detroit. Over 300. Shawn and her grandfather spent hours looking..and laughing at the photos. They found photos of me and Brian before Shawn. Shawn thought they were funny. Hey! It was the early 80s!  Lol. We enjoyed her company as always and and we are already looking forward to and planning to see her again soon. A trip to Illinois is in our future! 

Two years ago Brian and I were in the middle of training for home hemodialysis. Two years!  I've been doing treatment at home for two years. Incenter treatment seems like a distant memory!  I'll be reviewing and detailing what I do for treatment in a future entry.  I like that people are asking me about how I can do activities around treatment. Me being on dialysis is not some big secret. It is a part of my life. Hell. It's the reason I'm still alive. I am not ashamed or embarrassed. I do want you to understand that I get tired. But that is a function of the kidney disease. But I am going to get out and do as much as I can. Don't ever be afraid to ask me about dialysis or the kidney disease. 

And we're back to deep water aerobics. The instructor tried to kill us. Or it seemed that way after 3 weeks off. Lol. I don't realize how tired I get until about 2-3 hours later. Then I feel like I've been hit by a brick wall. Even the trainer ramped up the workout. But yeah, I am getting stronger. 

That's it for today! My high school friends met up yesterday in Detroit. They look good. We look good!  And the sun is out today. So yeah. Even though we didn't have ice storms we did have rain and clouds for a few days. I know. It's not the same.  But still!  Lol!  Have a wonderful day. Stay warm!  

Love this cardigan! 

Pandemic. The game. It looks like Risk, but instead of taking over the world, we work cooperatively to save the world!  I liked it, but I wanted a game where I could trash talk. Maybe next time!  Lol. 

Saturday, January 14, 2017

The "Christmas is Officially Over", edition.

Good Saturday morning. And the alternate title is "Shawn is on Her Way Back to Illinois". Sad face.  Yes. She was here for a nice long time. From Decemebr 21 leaving early this morning, January 14.  24 days. And it still wasn't long enough. Ok ok. That's my baby and as she says..paraphrased..I am such a mom. Time flew. Bah. Well. What did we do all that time? 

Day one Brian went to get a haircut. Shawn and I tagged along. Of course the barber shop was crowded so we left Brian there to wait his turn and headed to Fed Ex so the kid good send Christmas gifts to her grandma and great aunt. But first!  We stopped at The Donut Bar. She hadn't had breakfast. I waited in the car while she went inside. She came out with a pumpkin creme donut..the size of a tire. Lol. She said she was overwhelmed with the size on selections of donuts. I asked if she saw the strawberry creme donut. It's a large split donut topped with fresh strawberries and filled with more strawberries and whipped creme. She had. And we both agreed that it required a fork and knife. Lol. Yes, the pumpkin creme donut was delicious. Yum. 

After she finished at Fed Ex, we headed to Skechers. A few weeks before, Brian and I finally stopped at the Skechers store we'd passed for the the past 2 years. I tried on a pair of shoes and didn't want to take them off!  And then the store had a buy one pair get one pair free. Why do they do that to us?  They offered us a discount club card. .......  Anyway. Shawn got 3 pairs of shoes and because the special was still on...I got one more pair of shoes. Don't judge. And that evening I cooked her required dinner, cube steak and rice. <3 

The next day we went to Charmin Charlie's because she said she wanted some costume jewelry. Before we entered the store we had to spend a wheel of Wheel of Fortune. We got the 25% off.  Then she entered the store. She had that overwhelmed look that you'd understand if you've ever been to Charmin Charlie's. Lol. She left with lots of earrings and bracelets and scarves. Merry Christmas!  Or was that Happy Birthday?  Doesn't matter. Lol. 

Dialysis during her visit was fine. She'd come into this bedroom while I was doing treatment keeping us company. And you know Brian and I enjoyed her being there with us!  She helped me taking the pre-treatment data. Her being here with us was just a joy!  And yes, there is more to come. But the condo seems so empty now. Miss her already. Of course!  

That's it for today!  Stay warm and if you're in the ice area.lstay warm and cozy inside. 

Charmin Charlie's is color coded!  

Thursday, January 5, 2017

The "My Cousin, Wendell", edition.

Good Thursday morning.  I'm sad to say that my cousin Wendell passed away this week. He is the first of my generation to do so.  And this right on the heels of Aunt Jeanette passing. Wendell also lived in southern Ohio, near Yellow Springs...ground zero for the Perry family. I'm older now and some things I remember or barely remember. So if my facts are off, I expect to be corrected. 

Wendell's family lived in Cleveland. We made many trips there. A lot of Thanksgiving holidays. And I'd spend time there just I was there during the Cleveland riot :-o   Anyway. Wendell was the oldest of my three Cleveland cousins. About 10-12 years older than me. He always seemed like a wise big brother. That teased me. Lol but he was always kind....even if he and his slightly younger brother called me Rapunzel....  

Anyway. After he finished college, he and his family left Cleveland and moved to the Yellow Springs /Wilberforce  area and never looked back. After a while he and his family moved to a beautiful house.  What impressed me was the camera at the door to see who was there. This was over 30 years ago!  Yeah, the Perry's have always been technology geeks. He also had a full on apartment in the basement for his, bathroom, living room, bedroom and her piano!  And the apartment had a separate entrance. So even when I say the apartment was in the basement, the basement opened up to the backyard. And yes, his mom, my Aunt Dot (95 years old) is still there. 

Wendell was in Las Vegas this past summer for the Omega Psi Phi conclave. He was here pre-conference for board meetings. I believe he was a board member of the 501 c3 arm of Omega Psi Phi. He was ticked off because the airline had delayed his flight by at least 24 hours and missed a full day. He wasn't interested in staying for the rest of the conclave, but he did spend a few days with us!  Yay!  He and Brian got along just great. And the dynamic between me and my older cousin hadn't changed. Rofl. Except my hair is now too short to be called Rapunzel. Heh heh. 

We knew he had been experiencing health challenges and he wasn't shy about letting us know. He also had sight issues, but that didn't stop him. So when his younger sister, Lulu,  notified me late last week that he was in the hospital on life support and she'd be flying to Ohio from Texas, I was devastated. I just broke down I I am writing this.... Ok. My eyesight got a little blurry there. We'd get updates about his condition...remember my brother lives in Yellow Sorings and he'd call Dad. And Lulu would keep us updated. And my cousin in San Diego kept us updated also.

Our last update was that he had more brain damage than was expected. A few days later we got the notice he had passed. That hit the family hard. My cousin who had just stopped in Las Vegas on his way to San Diego last week is now back on his way to Ohio. When I say our family is close I mean it. 

The dialysis treatment does not allow me to be spontaneous, so I will not be attending the funeral. Yes, it ticks me off. But we got the chance to spend 3 days with him last summer. And we had a great time. He was one of my big brothers. I had no doubt that even though I was his little cousin, I was loved. He was full of life. Liked to tell stories and loved to laugh. He will be missed. Anyone who had the opportunity to be a part of his life his richer because of him. Love you, cousin. 

Monday, January 2, 2017

The "I Don't Do Resolutions", edition.

Good Monday morning!  It's a new year, 2017. And my response is so what. Life goes on.  I don't do new year resolutions. I'm rather pragmatic about that. I've set goals that I'm working toward. Reasonable goals. The goals are set when I need them to be set, not on an arbitrary day. That being said, I wish everyone a happy new year. May you continue on and keep reaching for you goals.  

Last week my cousin Mark and his wife Henrietta passed through town on their way to San Diego. San Diego?  Yes. He's the brother of the cousin we visited for Thanksgiving. Mark drove from southern Ohio. We'll call them snowbirds. And I can understand that!  These are cousins I grew up with and still enjoy their company. Dad treated us to the lunch Buffett at the M Resort on Thursday. We went expecting the regular lunch buffet. Well! Apparently The M along with other casinos had their Sunday brunch and Sunday brunch prices for the entire week between Christmas and New Years. Soooo. We go treated to the seafood buffet!  Crab legs ahoy!!!  We had a great time. Catching up with family, and telling Perry stories. Shawn got chance to hear some of our "legends". Lol. We all had a wonderful time and I enjoyed seeing Mark and Henrietta. <3

I'd planned on red beans and rice and potato salad for New Year's Day but it was Sunday and Dad wanted to take us (Shawn) to PF Changs. He said he owed her the dinner since she couldn't make it when he treated family during the family reunion in September. So off we went. Shawn got tofu...I tried it. It tasted ok, but the texture. Yuk. We made the potato salad on Saturday, so all those flavors have been going on. We did try some last night after treatment. We declared it good!  Later on today I'll fix the beans. 

Saturday we grazed. We had shrimp trays. I baked some chicken wings and used a Frank's/Srichaha hot sauce mix. Yum .. good hot wings. Brian tried his hand at frying wings. For a first time, they came out good. We also had a vegetable tray. And we each had our own bottles. I had moscato. No one but me likes it. It's too sweet. Dad had his champagne. Shawn had her red wine. And Brian had his white wine. Yeah, Dad went to bed early. Lol. At midnight, there were fireworks and gunshots. 

Today we have a few errands to run. Throughout the entire holiday season I continued treatment when I supposed to. And finally Shawn gave a donation to the American Kidney Fund for Christmas. What a wonderful gesture. The American Kidney Fund assists dialysis patients in paying medical expenses. End stage renal disease is expensive. And if the only insurance you have is Medicare, Medicare only pays 80% of the costs. The patients are responsible for the other 20%. Dialysis can cost at least $72,000 per year. And let's add doctors visits and other procedure. People could have pay to pay $20,000 out of pocket. But...most dialysis patients are unable to work due to the disease. The American Kidney Fund can alleviate some of this stress. The disease is horrible enough with knowing one can go bankrupt just trying to stay alive. So. Many thanks to Shawn. And I am so proud of her. 

That's it for today. I'm enjoying having my kid with us and love the fact that her school,has a ridiculously long winter break!  Take care. Stay warm and dry!