Dialysis Living - Photo blog

I am feeling a little better these days, although tired.  My neurologist doubled the dose on one of my meds.   It makes me sleepy so I only take it at night.  I still feel groggy and "hung over" from it in the morning.  Now I have twice the dose.  I have been doing a lot of sleeping the past few days.  I just can't seem to stay awake very long.  It will take me a little while to become accustomed to the new dose.  Other than that, things are ok and I am not so sad.

I grew up knowing what peritoneal dialysis was.  My Dad did peritoneal dialysis for three years before he received his kidney transplant when I was a teenager.  I grew up knowing there were two types of dialysis and I knew quite a bit about both.  I worked as a Nurse Aide at Beaumont Hospital when I was in High School.  I happened to be assigned to the kidney care floor.  So, I was really informed about all aspects of the care of kidney patients even before my Dad was diagnosed with kidney failure.

I chose peritoneal dialysis because I could do my dialysis at home and while I sleep at night.  (It didn't always work like that... Twenty years ago, my Dad had to do manual peritoneal dialysis four times every day.  That's not easy.)

Here's what my cycler set-up looks like...  It's up in my bedroom right next to my bed.  I needed storage for my supplies, but the dialysis carts that are sold through medical equipment providers are much more expensive.  And blah plain.  I got a 3 shelf wire cart from Target and also bought some colorful bins there too.  Much cheaper and much prettier!  It doesn't match the rest of my bedroom but who cares?  I just wanted something cheerful.  Period.  I think Nate Berkus will understand.

Celena added a baby peacock sticker she made for me to make the cycler look pretty :)

Here is my monthly supply of cycler bags.  There are between two and four bags in each box.  (I go through 2 bags per night).

See how icky it makes my office look?

I mentioned in passing to my friends, JoAnn and Jeff that there wasn't anything I could do about those ugly boxes in my pretty office.  Jeff replied "Wanna bet?"  So, he came over and took some measurements.  Here is Mark and Jeff at work installing my new shelf to hide the boxes...

 

Hayden helped too!

And the final product!

Much better, I think!  My thanks to Jeff for making the shelf and to JoAnn for making the curtain for the front.  It is so nice not having those boxes staring me in the face each time I go in that room.  I love my office even more now!

As you can see, I get through all of this with the help of my friends and family!

Peace,

Jenny

Wibbly Wobbly Timey Wimey...Stuff

Never did I expect to fall in love with this show!  I just finished watching all of the old episodes from 2005 until now (I started watching just before Christmas).  Now, when I think, I hear myself with a British accent. Haha.  Thanks, Dad!  I should have been watching all along... 

I'm feeling a little better today, spirit-wise.  I had a nice weekend with Mark and the kids, and reading all of the messages from so many great friends and family members on here, Facebook, and through text and phone messages really helped me know that I am not alone. A kind word goes a long way. :)

xoxo
Jenny

Timey Wimey

I decided I am not going to apologize for not writing more, because then I will be apologizing every post! Haha, so when I'm up for writing, I'll write.

So, I have been on the transplant waiting list a year now. I think hitting this "one year" milestone has really messed with my head.  I don't really like life on dialysis right now.  The newness has worn off.  I haven't gotten used to the uncomfortably-full feeling I get every night.  My dialysis nurses said I would, but six months later, it hasn't happened yet. I am also a little on the petite side, so that much fluid in me is really too much, and not fun at all.  

I know I shouldn't hope too much, but I couldn't help myself.  First, I was hoping to have a transplant before I had to start dialysis.  Then after I started dialysis, I hoped that the transplant would come soon afterward.  I feel like I am out of hope now.  I have braced myself for the long haul, and if a transplant comes sooner, then I'll be pleasantly surprised.  Well, at least every day I am working my way little by little to the front of the list.

I have been pretty positive throughout this whole disease, but BAM, all of a sudden I see the one year date and I feel like my spirit is broken.  I know I shouldn't let it affect me like this, but dialysis is hard.  I don't feel well.  I have little energy for the day-to-day stuff.  I haven't really paid attention to my appearance for a long time now, and all of a sudden I really don't like what is looking back at me in the mirror.  I am gaining weight from the dialysis fluid and not being active.  Because of this, I am the Queen of Stretchy Pants, but you can just call me the Queen for short.  I have no muscle tone anymore.  Just holding my arms in the position to type at my desk makes my arms feel so fatigued.  *in my Queen voice*  "Carry On!"

I think this is just a phase, this funk I'm in.  I am praying for this to pass.  And I am trying so hard to not let anyone see that I am crying on the inside.  But I'll get past this, I know I will.  My kids need me.  No matter how bad I feel and how much I look forward to bedtime (my bedtime), when I hear Hayden ask me "Mommy, will you snuggle with me?" my heart melts and I will not let wild horses (or my bedtime) drag me away from our nightly snuggle time.  I get into bed with him and we talk about our day.  And we always pick our dreams for the night together so that we will be in the same dreams at the same time (his idea).  Hayden reaches his hands up in the air and grabs the dreams that he wants, then he puts the dreams into his head (through his ear. And he keeps his other hand on the other ear so the dreams don't "fall right out."  Of course!)  He makes me catch my dreams too, but sometimes he notices that I don't catch the right ones, so I have to throw it back and wait for it to come back around and catch it again.  His favorite dreams usually include police cars and rescue vehicles and Doctor Who.  God, I love that boy!

Anyways, I think I am allowed a little bit of woe-is-me on this first anniversary of being listed on the transplant waiting list.  I hope there isn't a second year anniversary.  See.... there I go hoping again.  :)  I'll be just fine.

P.S. Bonus to anyone who understands the title ;)

Things I never considered before...

If you have a weak stomach, turn away now.  You have been warned!

Sometimes I marvel at the interesting problems I have.  Here we go... A normal person who has a stomach bug will get up to go to the bathroom when necessary.  These things usually hit in the night.  Well, I am attached to a machine each night.  The cord that connects me and my cycler is about 10 feet long.  The distance between my cycler and the toilet is about 25 feet*.  So when you think of the logistics, you will notice a problem.  I won't say any more, but little things like this make dialysis a huge pain in the butt!  (Pun intended)

*Of course I am able to pause the cycler and disconnect myself.  It must be a sterile exchange.  (Mask on, ceiling fan off, pets out of the room, hands sanitized, etc.)  So, it is possible to go potty, it just takes a little extra effort - and time.

Oh, and I have asked about extra long cords for the cycler, but my dialysis nurse said I didn't qualify for it.  What!?!?

Good days and Bad days

I wish I knew when to expect good days and when to expect bad days.  Now that I am on dialysis, I should be having all good days, right?  Well that's not how it has been for me.  Maybe I just need to give it more time.  Maybe it has something to do with what I eat.  Maybe it has to do with how active I am.  Maybe it is related to the strength of the dialysis solution I use.  Maybe it's a combination of all these things.  

I have had a few good days lately, but then Bam! yesterday was a bad day.  I had no energy.  I woke up and got the kids ready for school then went back to bed.  I read for a few minutes, then fell asleep until 1:30 in the afternoon!  I guess my body needed the rest.  Once I was awake, I couldn't seem to do much before feeling completely wiped out.  I especially felt it in my arms.  My arm muscles felt fatigued and limp.  Today seems to be shaping up the same way so far.

One good thing is that the other day I found a couple of online discussion forums for dialysis patients.  As I was reading through some of the posts, I really felt like I could relate.  I felt like I wasn't alone.  There are other people out there who feel exactly like I do!  Wow, it was nice to discover these.

I Hate Dialysis.com

Dialysis Uncensored

~Jenny

Sept 19 Update

Hey there!

Friday, I had my second epidural injection procedure for the herniated disc in my back (L5S1).  They put me to sleep and stuck a big needle into my spine.  It leaves me feeling pretty tender for the week following the procedure.  I can't seem to find a comfortable position where no pressure is placed on my back.  Oh, and on top of that, Monday I had my monthly Aranesp injection.  That is to stimulate my bone marrow to produce more red blood cells.  THAT injection also makes me feel very owie.  It makes my bones ache.  And again it is hard to find a comfortable position.  Each bone that is being sat on or laid on begins to ache after a few minutes.  What I really need is an anti-gravity chamber to hang out in for the time being.  Hmmm... as soon as I finish this post, I'm going to google that.

Anyways, dialysis is going well.  I am getting used to it, and have gotten pretty quick about the set-up each night.  I have also gotten used to the earlier bed time, even though I don't actually go to sleep until around 11:30 or so each night.  (I like to read in bed.  And the books I have been reading are those can't-put-down kinds.)  I get hooked up to my cycler around 9:30 or 10:00 each night so that it can finish by the time I have to wake up and get the kids ready for school.

My kids are so great.  They are very worried about me, and take a great interest in my dialysis.  They help me get the machine set up, and also help me with the nightly vital signs that I must do.  When we say our prayers each night, they also add "And may God find the perfect kidney for my Mom. Amen."  Hayden has been coming over and rubbing my back for me to make it feel better.  A few weeks ago, Celena set up a lemonade stand in the neighborhood.  She had Hayden and her friend Mackenzie to help with it.  They shouted at each passing car "Help my Mom with her doctor bills.  Lemonade for a good cause!"  They raised about $15.00, which they gave to me to help pay my doctor bills. (Have I mentioned how awesome my neighbors are?  I am blessed to be in such a wonderful neighborhood.) When I tried to refuse the money, Celena cried and said that's why she did the lemonade stand, and she didn't want the money.  So, I had to take it.  Such a sweet little girl.  All of them were such good sports, and so generous.  They didn't expect to keep even a dime.  What great kids!

I saw an awesome neurologist at the Emory Movement Disorder clinic. I was referred to him from my local neurologist because of the problem I have with my hands.  He told me they are called "negative myoclonus" and it should get better over time since I am now on dialysis.  I waited 4 months to get in to see this doc, and he didn't have anything for me except to give it time.  Ha!  But at least he knew what I have and why.  It's from the uremia (high level of toxins in my system from the kidney failure).  The nerve endings are irritated from the toxins and it causes repetitive momentary muscle failure in my hands.  My hands "fall down," thus being *negative* myoclonus.  If my muscles jerked upwards, it would be *positive* myoclonus.  He also said the uremia has caused the neuropathy in my legs, and it should also improve the longer I am on dialysis.  That's good to know!  The problem is that I am impatient.  My leg pain (neuropathy) has been going on for over 3 years now.  And the hands have been bad for about a year and a half.  The doc said that neither of my ailments started overnight, so they won't go away overnight either.  So, I must just sit back and wait...

More later.  Love to you all.

Jenny

Catching up

I'm bad.

I started this blog to not look like I was fishing for attention, or sympathy or whatever on Facebook.  But I haven't written anything on here in a really long time. I will do better...

In July, I had surgery to place my dialysis port.  It's in my abdomen a few inches away from my belly button.  It doesn't just go straight in though.  They "snaked" it through my skin/muscle layer so it goes up and back down like an upside-down U. THEN it goes into my abdominal cavaty (peritoneum). The cord that hangs out of me is about 18 inches long and it has a special ending that attaches to the bags of fluid (dialysate) or attaches to my cycler machine.  There are 2 ways that I can do dialysis: during the day- called "Continuous Ambulatory Peritoneal Dialysis or CAPD.  The second way is just called nighttime dialysis and it uses a machine to push and pull fluid in and out of my belly.  The second is what I do.  Both kinds are done every single day. No days off!  

My machine is called a cycler.  So I attach my bags of dialysate to the cycler each night and hook up the tubing, which ultimately connects to me.  Once I am connected, I can only go as far as the tubing will let me. So when Hayden has one of his frequent nighttime nosebleeds, Mark has to help him.  No going potty... Can't reach! Haha I better go before hooking up!  And I have to have a set bedtime now because the later I hook up to my cycler, the later it finishes in the morning.  No stopping it early. It runs for 8 hours (plus the time it takes to hook and unhook). So if I need to get up early for getting the kids to school, for doctor appts., etc... I need to get to bed on time.  So that puts the kibosh on any late night outings.

I love doing dialysis at night since it leaves my days free.  But there is a problem with the cycler: it uses suction to remove the fluid from my abdomen.  Not so bad at the beginning, but once my abdomen is mostly empty, the suction really hurts!  It's like a straw suctioning the last few drops of drink from your glass... It feels sharp and pinchy and hurts like nothing I've ever felt before. It all depends on where the port is laying on the inside of me.  Because of the fluid I put in there, plus my bowels always moving around, the port floats around.  I never know where it will be located at the end of my drain cycle.  Sometimes it hurts to high Heaven.  Sometimes only a little or not at all.

Right now, my dialysis prescription calls for 5 cycles of 1500ml of fluid in and out of me all night for a total duration of 8 hours.  So each "dwell" time is a little over an hour.  The fluid has to stay in me to work on drawing out the toxins from my body.  Me being on the small body side, a liter and a half of fluid in my belly looks and feels like I am 8 months pregnant.  It is so uncomfortable and stretches my belly so big!  But thankfully right now, I am drained empty at the end of all the nightly cycles.  So I get to be empty during the day.  As my disease continues to progress, my prescription will continue to change and may include leaving some fluid in during the day.  Some people also have to do manual exchanges of fluid during the day.  I don't want that!

I have three different strengths of solution to choose from each night.  I select them based on my blood pressure and some other factors. So my whole front room downstairs has become my stockroom.  I have many many boxes of solution, and get shipments each month to replenish the solution and cycler supplies (tubing, masks, tape, gauze, clamps, caps for the end of my port, etc.) Nothing is re-used.  I go through a lot of supplies every day and since they connect to the inside of me, everything must be sterile.  This leaves me with a plethora of empty boxes! Right now, we are saving them for Hayden who likes to build forts out of them or stack them up and karate-chop them down! Ha!

Well the whole reason I started this post was to talk about the epidural injection I got in my back yesterday for my herniated disc.  I am feeling really owie today.... I guess I'll save that post for two weeks from now when I get my second epidural injection.  Sheesh! I am a mess.

Peace, love, and pain meds,
Jenny