Tuesday, April 18, 2017

The "Easter Weekend and Stuff", edition.

Good Wednesday morning. Well, I'm over the 500 mark in blog entries. And there are a few I started and didn't like and/or just didn't finish. Wasn't in the mood. Whatever. That's a lot of writing. Over the years I've taken 2 steps forward, 3 steps backward...5 steps forward, 2 steps backward.  There have any number of combinations. But. I'm still standing. 

I think I've mentioned that Dad, Brian and I go to brunch every Sunday. Back in the day, Mom and Dad and their friends would all meet up for brunch at Main Street Stafion. Dad is almost the last man standing. So when Brian and I moved here I told Dad we'd go out to Sunday brunch with him. And we have. We and Dad alternate weeks we pay. We've missed very few Sundays. And we've stepped up our game. We started with a rotation of buffets. But buffets get tiresome after a while.  We've added non-Buffett restaurants in the rotation. Dad especially likes Fogo de Chao...and you already know that. And he likes PF Changs. So this Easter we had Easter brunch at PF Changs.

Times have certainly changed from when I was growing up, with the big family holiday dinners. And I did do dinners when I first came out for my seniors but 2 have passed away and one is pretty much confined to his assisted living home. Never fear.  Now I knew we were going to a Chinese restaurant for brunch. So Saturday we got a small Honey Baked ham and a small Honey Baked smoked turkey...because I like the turkey and Brian likes the ham and Dad likes both. And yes it's way too much food. Anyway. Brian roasted some brussel sprouts and we fixed queso macaroni and cheese (!) If you like queso, you will like queso macaroni and cheese. We've been experimenting with our cooking and considered pimento cheese macaroni and cheese, but we shifted to queso. Yes it's as good as you think it is. It's a keeper!  

We've introduced Dad to gyros, and you know he loves the Mexican seafood restaurant.  He likes Buffalo Wild Wings. We've found an authentic Jewish deli and he got a monster Reuben. We also have a little restaurant where the owner is from Ohio, like Dad, and the owner gives Dad a hug every time we go there. . And she cooks the best hash in town!  Even lobster hash!  And these are just the restaurants that come to mind. 

On the dialysis from I'm doing ok. I'm sleeping better while doing treatment at night. I'm making peace with my arm..you know, the arm with the needles. The good news is that we're now waking up when the end of treatment alarm goes off!  

I've talked about my lab results, well here are my latest results...that I receive via email. You can see what needs to be controlled because of the kidney failure. The reports shows where I should be, where I am as of the last test, and the last 3 readings. What I can tell from the current report is that I will need the iron infusion this month. Ugh. My calcium is slowly rising, but it is connected with my PTH level. The nephrologist will review this at my next appointment later this month. Remember I had 1 of the 4 PTH glands shrunken in February. The PTH number dropped dramatically, but it still needs to drop more. One more procedure next week should do it.  The phosphorus is ok..a bit low, but this means I can eat some high phosphorus foods. The concerning number is the potassium. I wrote about that earlier. We'll be taking blood tomorrow to see if the those giant, humongous, I can barely swallow potassium pills are working. Huuuuuge. Lol. The stdKdt number is how well the dialysis working. It's working quite well, my clearance..removal of toxins is great. 

In the last week. I've been asked to talk to several people who will be starting dialysis soon. They are scared and there's nothing wrong with that. Just before we left Detroit, Brian and I both were trained by the National Kidney Foundation of Michigan to be peer mentors, so I'll be putting those skills to use. 

Well that's it for today. It's the windy season out here ..just before it gets hot.  Really hot. Heading off to deep water fitness. Have a great day!  


ALBUMIN

Your Goal
4.0 g/dL or Higher
Most Recent Value
3.9 g/dLon 04/05/2017

HEMOGLOBIN

Most Recent Red Blood Cell Count
11.6 g/dLon 04/05/2017

IRON SATURATION

Your Goal
20 to 50%
Most Recent Value
20 %on 04/05/2017

FERRITIN

Your Goal
200 to 800 - acceptable 1,200 ng/mL
Most Recent Value
381 ng/mLon 04/05/2017

CALCIUM CORRECTED

Your Goal
8.4 to 10.2 mg/dL
Most Recent Value
10.0 MG/DLon 04/05/2017

PHOSPHORUS

Your Goal
3.0 to 5.5 mg/dL
Most Recent Value
3.2 mg/dLon 04/05/2017

PTH Intact

Your Goal
150 to 600 pg/mL
Most Recent Value
987 pg/mLon 04/05/2017

POTASSIUM

Your Goal
3.5 to 5.5 mEq/L
Most Recent Value
2.8 mEq/Lon 04/05/2017

stdKdT/V Dialysis

Your Goal
2.0 or Higher
Most Recent Value
2.90 on 04/05/2017

VITAMIN D (25-OH)

Your Goal
Most Recent Value
16 NG/MLon 01/02/2017

The goal values shown here are based on general healthcare standards for dialysis patients; your specific    


Friday, April 14, 2017

The "Adjustments", edition.

iPad shuffled to "Yeah", Usher featuring Lil Jon and Ludacris. Wake up and dance!  I'm feeling like I'm slacking on the blog. But I'm not. I did write every Monday Wednesday and Friday when I went to incenter hemodialysis at the dialysis centers (shiver). It was a way to pass time (3.5 hours). I became real attached to my iPad then. Music, writing and the World Wide Web. Yeah we had TVs. As a matter of fact in Detroit we had high def TVs with cable. But even then there's only so much on tv. I'd have the tv on mute. Eh. Jamiroquai, "Virtual Insanity". Good song. Good video. As I'm adjusting to nocturnal home hemo I tend to wake up in the morning and then maybe write. I also missed my music. And finally I'm tired of the Today Show. I wandered off once Tamron left. I digress. 

I'm adjusting to nocturnal home hemodialysis. I'm learning how to sleep with 2 needles in my left arm.   Hehe. Roger Miller, "King of the Road". I loved this song when I was a kid. Lol. And the needles have tubing which are connected to my portable (75 pounds) kidney. And the new addition of a blood leak sensor...the most unintrusive item. This is all covered by a cut off pantyhose leg over all the needles and tubing on my arm.  I also have a pillow on my left side for my arm. But when I go to sleep I roll over on my side..my left side. Yes. I know I'm not supposed to sleep on my fistula. And I don't.  You can sleep on your side without laying on your arm. I actually end up with my arm at a right angle and my hand near my head. And for some reason my hand is clinched in a fist. :-/   Steve Miller Band, "Jet Airliner". Then I may roll over on my back. My arm may still stay near my head. Or I may bring it down...slowly..on the pillow by my side. Sometimes I have to move it down because my hand gets numb. And unclench my fist. Lol. 

Anyway. My sleep is getting better. We still have the odd blood leak alarm going of. Not sure why it happens. I thought it was my movement. But it's not. Someone in one of my home hemodialysis Facebook groups (how specific is that?  Lol) suggested that it was errant perspiration that causes the alarm to sound. Well, the alarm is sensitive to moisture. That may be it. Ray Charles, "What'd I Say". The good news other than that, this has been the most boring transition in my dialysis life. Good! 

Now, of course life just can't go on without drama. I'd been unusually tired and it took way too long to get rid of a cold. And don't forget that in February I had the ablation procedure to shrink a parathyroid gland. Well kidney failure..ESRD means your body chemistry is wonky. Dialysis and drugs try to make it at least good enough to stay alive. Let that sink in. "Good enough to stay alive" I am now taking vitamin D pills. I get doses of epogen to increase my read blood cells..then sometimes I don't .. in case  I've had enough. In other words the doses come and go based on my blood lab readings. Steely Dan, "Babylon Sisters". I take a calcium supplement. I ingest a phosphourus binder because my body cannot rid itself of phosphorus. And now. My potassium levels has dropped to dangerous levels. WTF?  Where did that come from?  Lol. 

The first of the month Brian takes blood samples. No, he does not stick needles in me. The needles that I stick in me are attached to tubes.  He inserts a dodad attached to the tubing and the vials to collect the blood. After he collects the samples (4 vials before treatment, 1 after) he does something with a centrifuge that the dialysis clinic gave us. He refrigerates the blood then we drop it off at FedEx the next day. In about a a day or 2 I get an email that my results are available. As do my nurses. If there is a problem when they see the results they call me with instructions. Such as increase this medicine, stop that one, we've called in a prescription...at either a local drug store or the Davita pharmacy. James Brown, "Get Up Offa That Thing". Yikes I'm chair dancing!!  So I get a call from my nurse Monday. My potassium level is 2.3. Oh shoot. The normal levels 3.5 to 5.5. Yikes. 

Low potassium is just as bad as high potassium. Nurse asks me if I'd been cramping. I have, but not bad, but watching my toes splay every now and then. And she asks if my chest has been hurting. It has. Thought it was heartburn, but I admit on Sunday it was a real hurtin' heartburn. And I'd been ridiculously tired. And yes, I was still going to deep water fitness and to my trainer.  So now I am taking a gigantic potassium pill twice a day. Al Green, "Still in Love With You". Swoon. Heh. The first time I tried to swallow the pill ..I couldn't. Ugh. Like one of those big ass iron pills we had during pregnancy. Ugh. Ugh Ugh. It didn't want to go down. Ugh. 

And yet, there's more, but this is enough for today. I just want to feel good one day. I mean really good. I hate dragging Brian on this awful journey and yet I'm so grateful for his support. Ah well. My glass is still full. Striving for that day when I feel aces again!  The weather is great. A little windy. Dad celebrated his 91st birthday. And he's walking his ass of every morning!  Signing off with The Whispers, "Just Gets Better With Time".   {wanders off looking for Brian to dance... <3.  }

My real specific Facebook groups, but what a wealth of information and support! 





Tuesday, April 4, 2017

The "Informed Health Care", edition.

Good Tuesday morning!  iPad started with Rodney Franlklin, "The Groove". Jazzy dance music?  Anyway. How knowledgeable are you about your health and the care you receive?  In the dialysis world  it is very important that you know what's going on. Otherwise you are the mercy of health care professionals who may....or may not have your best interests at heart. I think I mentioned..or not..that about 80% of dialysis clinics are run by 2 corporations. Money making, for profit corporations whose bottom line is making money. Patients are just a commodity, the ends to the means of money. Yes, and a majority of the money comes from Medicare. So if Medicare cuts funding, and it has, the patients feel  feel it first. Got to keep those profits high. 

Now that that's out of the way, let's talk about being informed. Or better yet, how patients get treated in the dialysis centers. The nifty thing about writing this blog and posting on Facebook,  and I've been writing since early 2013, Facebook lets me see my memories. I can see what I've written. Today's memory form 3 years ago was pretty depressing. I was writing about my fellow warriors. In retrospect I was surrounded by death on a regular basis. Ok. I've digressed again. Let's talk about being informed. 

The Whispers, "In the Mood". Once I had the diagnosis of end stage renal disease, I started looking it up. The doctors and nurses and whatnot in the hospital never gave me enough information to satisfy me. And while I was in the hospital Brian brought me my iPad, bless his heart. I admit that what I was reading horrified and scared me. I had to take it in in bits and pieces. It was a lot of no hope stuff..at least from my perspective. Certainly life changing. I had catheters in my groin, they my chest, then someone wanted to put something in my arm. And no one, I mean no one explained jackshif to me. Of course I'd ask..or would even refuse to go with orderlies until someone came to explain to me what was going on. This stuff was scary enough without knowing what was happening to me. When I was sent to get the chest catheter, I asked the person performing the procedure a ton of questions and even asked her credentials. Lol. 

Eventually i made it to the dialysis center. I was discharged from the hospital on Friday afternoon and was at the dialysis center Monday afternoon. Chicago, "Safurday in the Park". I eventually ended up with a really good dialysis tech. And in retrospect, after going to other dialysis clinics out of town when I traveled, most of the techs at my center were pretty good. A lot of the techs and nurses made sure we were informed. Of course there were noncompliant patients who just didn't care. But a good number of us took in the information. While I was still trying to understand the scope of my kidney failure, my tech made sure I understood the dialysis machine. Yes, I was overwhelmed. But she forced the topic. Lol. Glad she did. After a series of me passing out, another tech advised me to make sure staff did,not pull more than 2.5 kilometers of fluid off of me during treatment. The social workers helped me navigate travel and encouraged me to get involved with the National Kodney Foundation, MOTTEP (Minority Organ Tissue Transplant Education Program), and become a peer mentor to dialysis patients. 

Eventually I decided I wanted more control over my treatment. I'd speak up when my skin reacted to the alcohol pads, and then the paper tape. The center made the adjustments. My access was deep and the center changed to needles that were longer to make the cannulation easier. I wanted to learn how to stick my self. And my tech started with teaching me to remove my needles. Yes there some bloody incidents!  Lol. A tech even started to teach me how to remove myself from the dialysis machine. At this point, I was being convinced to try home hemodialysis by other forces. I was scared. But after understanding the benefits and flexibility. I went for it. Of course home hemodialysis was delayed by the move to Las Vegas.  

Now here's a tidbit. The group that runs the dialysis clinic I went to, Greenfield Health Systems, offered an information session of home hemodialysis.  They have a good number of clinics in Michigan.  The number of attendees to the information session was small. And I was the only one from my center. Based on the number of chairs, shifts and days, we're talking over 200 patients.  I. Was. The. Only. One. I was disappointed. But people have their reasons. I get that.  Parliament, "Flashlight". You know you want to start dancing!  

Once I moved to Las Vegas, the clinic was just awful. Ugh.  I realized how fortunate I was in Detroit. But I think it was a function of the center I was placed at. And staff tended to treat you like crap, unless you called them out. And you can call them out by being informed. I really went toe to toe with my new nephrologist. I had to let them know I was an informed patient and he could not be patronizing toward me. Geez. We're already dealing with esrd and dialysis and we have to deal with this?  Not me. Compassion anyone? 

Fortunately I started home hemo training within 5 months of arriving in Las Vegas . And I haven't looked back. And as informed as I was before I started home hemo, I am much more informed because I have control over my treatment. And having a team that listens and understands helps immensely. Case in point. I have a skin disorder( which manifested when I moved to the desert...go figure). The treatment for the skin disorder is at odds with a dialysis treatment....I get iron supplements for dialysis because my kidneys don't work and can't make enough iron. But iron exacerbates the skin condition. The nephrologist, nurses and I discussed the issue. Based on my lab reports they decided I can get iron infusions every other month as I have enough iron stores to skip a month. This was a group decision and I was involved and informed on my treatment. 

The System, "Don't Disturb This Groove". I know all of my medications. I know why they are prescribed. I know side effects and which side effects I need to watch out for. When I go to another doctor I know my meds, amounts and dosage.  Don't need to bring a list. You need to be able to do this. You need to be able to know exactly what's going on with you to make informed decisions and advocate for yourself. It could save your life. And I'm going to tell you, it can make a difference how the medical staff treats you. Don't stand for any crap. And by knowing what you have going on, you'll be fine. 

Finally, we had a thunderstorm yesterday. Thunder and lightening, very, very frightening...for 15 minutes!  Lol lol. But it was a real storm. The lightening was most impressive across the desert sky. For some reason we left to go during the storm to go to the grocery store. I told Dad that we planned on melting. The sky to the north and the sky to the south were both blue with peeks of sunshine. Sky to the east was jet black. By the time we got to the grocery store it had stopped raining and the sun was peeking out. Lol. 

Singing off with Isaac Hayes, "Joy". Yeah...  ;-)  Oh.  Dad will celebrate his 91st birthday on Sunday, April 9. Guess where he wants us to take him?  You know!  Lol. Have a wonderful day!