Jan 8, 2018

CHAIR TIME

I had what could have been one of the better weekends ever.  I felt well, slept, stitched, cooked, putzed, and rested for two whole days.  I'm grounded to the confines of CS2 because of all if the flu out there, but that's just perfect for this Happy Chair-loving hermit.

Today I am in the other chair...settled in for a full Jiffy Lube.  We are so far running right according to plan, and if Friday and today are any indication, the trauma portion of this adventure is over.

God, I hope so.

Many of you have asked me about the mechanics of dialysis, so I thought I would answer you here.  For those of you who aren't interested, I will bid you adieu here and tell you to have a wonderful Monday.  Do something swell and come tell me all about it!  Tomorrow, I promise to have some stitchy updates for you.

.................

The first thing that happens when I enter the dialysis unit is that I weigh in.  This is important because kidney failure often causes a lot of fluid retention, and major changes in weight need to be addressed by the amount of treatment that needs to be done that day.

My techs tell me which chair I'll be in that day (there are about 40 in my unit in Mishawaka), and I head there and get situated.  This basically means I get my seat cushion, blanket, pillow, snack bag, drink, and "toys" all unpacked and easily accessible.  I also kick my shoes off, get my fuzzy socks pulled up, and unzip the left arm of my sweatshirt.

(I made a couple of dialysis sweatshirts by taking sherpa sweatshirts from Woman Within that I had in the closet...undoing the seam in the inner arm, and then sewing in a full-length zipper.  This has turned out to be a Godsend, since my left arm has to be totally exposed but I tend to get a little chilly during treatment and the sweatshirt keeps me cozy.)

(I also discovered that I am more comfortable if I wear leggings and just a soft white tshirt...no underpants or bra to pinch or poke.)

(And yes...in case you're wondering...I've kind of made crazy patterened leggings "my thing" that the staff get a kick out of, so I plan on going on the amazons to get some more to keep them entertained.)

Once I'm situated in the chair, it's time to stand up and get a standing blood pressure, and once that's complete...it's Buzzy time.

The tech inserrts two needles into Buzzy about an inch or so apart.  The needles go into a different spot each time, but are always somewhere on my upper arm.  We've discovered that Buzzy is very deep in the arm the higher we go, so if at all possible we try to stay somewhere in the middle.

Once the needles are in and secure and flushed, we get attached to the dialysis machine next to my chair.  This machine is basically the size of a small refridgerator, and it functions as an artificial kidney.

(I haven't come up with a name for it yet, but I'm leaning toward Beepy...since she tends to do that.  A lot.)

Beepy's job is to pull blood from my body and clean it of toxins and excess minerals and stuff that my own kidneys are too busted to do.  Beepy also is responsible for pulling fluid...but in my case we don't do to much of this, because I am on the "dry" side and not retaining hardly any at all.

All of this is done with a computer and the help of a tech, who monitors and checks and adjusts and futzes with things throughout the entire course of treatment.

As for me?  Well, this is only my second trouble-free session (knock wood), but I can tell you that it seems to have a pretty consistent pattern.  The getting here, situating, and insertion of the needles are a bit nerve-wracking for me.  The best way that I can describe it is that it's somehow claustrobic...that I know I'm going to be tethered, vulnerable, and out of control for the better part of six hours.

(Betty, let me save you the time of pointing out that this is a life-saving requirement for me and that I should stop my bitching and whining about trivial things.  I'm not bitching or whining...just trying to describe what I feel at various stages of this thing.)

The first hour or so is usually when I feel sleepy and drained and maybe just a little woozy.  My eyes feel very heavy and all I want to do is lean back, put the music on, and semi-snooze.

The second and third hours I seem to perk up a bit.  I snack and sip my Vitamin water and play on the ipad...reading/writing emails, blogging, looking at Pinterest and Instagram, texting Rich, or watching Flosstube.  Through it all, I have really enjoyed listening to music, and have discovered that there's a whole world of stuff out there that I like (hello, Coldplay!).

Occasionally, a staff member will come over to chat, or a nurse will come over with meds or to check in.  I have met both the dietician and social worker and will probably have more in depth meetings with them later, but for the most part I just kick back and try to behave myself.

The last hour is the one that we're still working out.  Because of the small size of the needles we're using, and because this requires the machine to run slowly, my blood is clotting.  A drug called heparin prevents this, but we're still finding the right dose.

Once Beepy is done doing her thing and all of the tubes and such have been flushed and disconnected one of the needles is removed and I hold a dressing over the poke to make sure it's done for the day...usually about ten minutes or so.  Then the second needle is pulled and I hold again.

Another standing blood pressure is taken, and then I head back to the scale to weigh in.  The goal is to to leave with the same weight as when I entered...i.e., not too juicy with extra fluid or not too dry with too much pulled off.

And then it's time to head back to CS2...get a smooch from my Jersey Boy, have dinner, and call it a day.  I seem to feel just a bit woozy and a little wiped out for the rest of the evening, but I think that will change as I have more and more good sessions.

Like I said...this is only my second session in which I haven't had all hell break loose...also known as a crash.  It was looking pretty grim there for a minute, kids, and I am really surprised (but profoundly grateful) that I survived it.  I'm sure that surgery, the flu, and everything else didn't help matters any, but I can sit here today and tell you that those crashes were the hardest, scariest, and most terrifying things i've ever had happen to me.

Needless to say, we are NOT going to be hitting the "repeat" button on that one.  No way.  No how.

(Pause for PopTart insertion, please)

(See?  Told ya I get a little snacky...)

I'm not sure what my new normal is going to be now, if there really is such a thing.  I know that eventually I will be able to return to things like Guild meetings and Mass and hockey games, but at the moment the flu has me grounded.  I was lucky to have only had a bit of a stomach bug for a few days, but catching the other crud that's out there would be catastrophic.

My hopes of stitching my eyeballs out while in this chair haven't been completely dashed, and the staff here assures me that as Buzzy and Beepy get better at their date nights I will be able to do so, but for now I need to relax on that front.  It will come.

What has come is the knowledge that I will somehow find a way to stay in this as a tech or a nurse or as a mentor or advocate in some way when this is over.  I don't have a single clue how I'm going to do that or what it even means, but if I can help one person navigate it or just give somebody a little pat and assure them that it will get better...then I'm all in.

For now, though, I just need to concentrate on being a patient.  My sister is awaiting the kit from IU that will send us through the next step.  I pray that she is well and able enough to continue, and that we can head to Indy soon.  

So that's the big whole story for the day, my Dearies.  I see that the Chicken Sisters have introduced themselves to you and have started goofing around.  Thank you for the warm welcome you've given them...they can be quite a handful, but Stewey trained me well, and methinks I'm ready with whatever they're going to throw at me.

I'll close with my heartfelt thanks for coming on the ride with me.  I didn't expect to have so much company, but your love and support and encouragement are well worth the ride!

Take good care, do something fun, and please come tell me all about it!

Love,
Coni


31 comments:

  1. Thank you for taking time to tell us about this. It really helps to see what you are going through. Will you tell us next time how many days a week you do this now and how many days it will be when it gets to a normal routine. Be well.

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    1. Hi, Charlene! Three days a week...Monday, Wednesday, Friday. I usually come in at 12:30 and am home by about 6:00 or so.

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  2. That you want to become an advocate or work in a dialysis unit says a lot about the quality of your team. How fortunate that you have such a great group shepherding you along. Be well.

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  3. So happy to hear things are smoothing out. As a nurse, I know that your positive attitude and sense of humor make a huge difference in helping you on this journey. Take care

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  4. Hi Coni, I'm a new reader. I only discovered your blog a few days ago, and I've read back a few years to get to "know" you. I'm not a spinster (but have enjoyed the spinsters of literature, especially Barbara Pym's), am a knitter and occasional needlepointer and cross-stitcher, and a great lover of my four legged family members. Your deep loss in Stewie's death really struck a chord with me; I'm still mourning the loss of my beloved basset Max in 2012. I wish you great luck in this new stage of your journey and sm so glad you have Jersey Boy to accompany you on it.

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  5. Hi Coni,
    So glad that things are getting smoother for you with the vampire squad. 6 hours is a long time, but I have a friend that has been on dialysis for 18 years (food poisoning blew out his kidneys) and sometimes if they go too fast, they cause all sorts of problems for him, so the fact that this is slow and steady for you is a good thing. I was going to suggest flosstube as a way to pass the time, but you have that covered. Nappy time, snacky time, floss tube time .....heck, novels on tape, foreign language instruction...well the possibilities are interesting. A case of the flu notwithstanding, I am glad to know that the dialysis has you feeling better generally, and that things are hopefully moving forward with your sister. Patience is a flipping virtue.....what can I say?
    Now then, those two dirty old lady cluck clucks and their calendar, working on recruiting some beefcake for this calendar. One thing in common with all of them - the ladies in their lives are s-titchy. Don't try putting any other letters in front of itchy............lol.
    Keep up the good work, and more red velvet cake.....

    Prayers continue.....

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  6. Coni Dear
    Soft gentle hugs,healing prayers & happy thoughts flowing through the Cosmo's to you.
    Blessings
    Baa
    who is still cold in Florida

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  7. I'm so glad this session went better. I hope that this is the beginning of good sessions from here on out. Praying...

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  8. WQXR (classical out of NYC) Radio has a free app that isn't pretty good! Their weekday programming and hosts are delightful; all-around good company. Public radio, too, so basically no ads. Can't vouch for their weekend, weekend afternoon seems good, but have found "undesirable" and "noise" at other times during it.

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    1. IS pretty good! (Oh, auto-correct!)

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  9. Bravo! Miss Coni, Bravo! Keep on keepin' on! :D Love, hugs & prayers, Cathryn ♥♥♥

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  10. Altering the sweatshirts was such a great idea, Coni. Not a bad idea for a little business.

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  11. I've always wondered about dialysis. Thank you for taking your time to explain it. I hope each session gets successively better.

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  12. Coni, glad things are starting to go a little better. I have a magnet that reads " Do something that scares you everyday" I think you have about a year's worth. Hang in there!!!

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  13. Glad that things are smoothing out. I do agree that attitude is very important snd I think yours is primo.
    Good thoughts to you.

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  14. Coni,

    So glad to hear things went a bit better this time around. Love hearing your tales:) I will keep you in my prayers.
    Happy Stitching!!

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  15. Coni, it sounds like it was a bit smoother today and your body is adjusting. Sending you gentle hugs and good thoughts!

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  16. Man! That sweatshirt idea is genius! I donate platelets once a week and it always makes me cold.I usually wear a sweatshit, but that means I have to take it off, so they can do theit stuff, take my BP, check my veins etc and pray I don't flash the poor tech. I then put it back on for the hour and a half it takes to donate but it gets uncomfortable sometimes bunched up over my elbow.

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  17. That is SO interesting Coni. Thanks for explaining dialysis to us. I'm so glad it went well for you today. I hope you're over the hump, and it continues to get easier and easier, I think you could start a new product line of soft zipper-armed shirts and call theme Buzz Wear.

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  18. Thank you, Coni! Well described. So, so glad things are falling into place.

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  19. What a trial to go through. Will be praying for you. You seem to be handling all with such bravado! Way to keep a positive attitude!

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  20. Maybe, just maybe, you're beginning to feel a bit better? Here's hopin'!
    -p.

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  21. You are an amazing person who always puts such a positive spin on whatever life throws your way. You would make an awesome nurse!

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  22. I am so relieved to hear your sessions are smoothing out Coni, that is a long time to be in a chair! Thank you for telling us about your dialysis, I have always wondered how it all works. I have my fingers crossed things will be ok with it from now on!

    I seem to have caught a bug of some kind, so I may be in bed watching Bones today...the vertigo is driving me nuts!

    Hope you have a good day today, with lots of stitching. xo Mj

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  23. Very interesting. Thank you. Hoping for easier and easier sessions for you.

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  24. I'm so glad you're adjusting to treatment.

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  25. Hang in there Coni. This time you will look back nd say"It wasn't that bad."

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  26. That is this time next year!!

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  27. Thanks for explaining the process, Coni. Your sweatshirt idea is genius.

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  28. Coni! Thank you for explaining the dialysis process. Fascinating. 6 hours! I see a business opportunity for you with the shirts.....

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  29. So happy to hear you had a couple of good dialysis treatments. Hope that keeps up!! Do you listen to maroon 5. If not try them out.

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