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

Thankful

(...I'm still mad, but am more thankful for my blessings than mad at Social Security - LOL)


I have the very best neighbors in the world.  They are my dear friends, and they have helped me in small ways and in huge ways.  I love them.  That is all.

Mad

Social Security denied me.  Again.  What, do they think that no one deserves coverage until they are on their death beds?  My kidney function is now at 10%.  Do they think that I will just go away?  No.  But now I am forced to fight this battle when I am even sicker.  I have already put in many many many hours into explaining my symptoms, explaining my daily routine, explaining my every doctor visit and every medication and every MRI, blood test, urine test, and every diagnosis.  I have fulfilled their request to complete endless online forms and requests of faxes.  I have sat by waiting their 3-4 months that they have to look at my information, but 30 or 60 days is all they give me to complete their forms.  But I am at their mercy.  I don't have a choice.  Now I get to file another appeal which requires a hearing before an Administrative Law Judge.  Oh, I'll be there alright.  Bring it on!


It upsets that Social Security can't understand that I have a progressive disease.  It is a known fact that chronic kidney disease doesn't get better.  I could possibly hold steady for a while.  And I did - way back when.  I was holding steady.  And holding down a full time job.  It was when I started declining that I came to the point where I couldn't work any more.  I did my part.  I stayed on working until the very last moment.  I could not have maintained the work schedule that I had any longer.  In my heart, I know that I did my part.  Now why that I have a progressive disease that progressively getting worse, can't Social Security see that?  How much more worse do I need to get before they "get it"?


I'm not concocting a scheme to sit home and rake in their cash!  I have a legitimate disease. I didn't do this to myself.  I didn't drink myself into this.  I didn't smoke myself into this.  I don't do drugs, I don't starve myself or over-feed myself.  I have done nothing to myself!  So why do people who have gotten themselves into a disease get taken care of, while I am sitting home, sick and weak, still filling out their appeal forms?


And don't even get me thinking about welfare and the illegal immigrants receiving government money.  Grrr...

Bad hands

For the past week or so, my energy level has dropped to rock bottom.  It feels like my arms and legs are heavy, like I am under water. I just feel so sluggish.  It's hard to get out of bed. It's hard to get off the couch.  Thank goodness Celena can help with things like getting breakfast and lunch for Hayden.


I have been having "myclonic episodes" in my hands for the past year.  Some days are better than others, but lately, it has been so bad.  As I type, I am momentarily losing control of my hands.  It's something like a twitch, but its where my muscles "fail" for a moment.  I feel an electric jolt as it happens.  And it used to be mostly in my fingers and hands, but I have also experienced it in my arms and legs too.  It happens over and over and over.  If I was counting, It would probably be close to 100 times since I started typing this blog post. I can not even imagine how much more frustrating this would be if I was still working.  I would go out of my mind!!  Thank goodness I don't have to do much typing in my stay-at-home life (typing this blog is frustrating enough!)  It happens when I write as well.  And file my nails, work the TV remote, dial a phone, cut up strawberries, sew on Girl Scout patches, drive, comb Celena's hair, put on make-up, brush my teeth, drink my coffee, etc. etc. etc....!!!!  You get the picture.  My neurologist is sending me to the Emory Movement Disorder Clinic.  First available appointment is in September.  Ha!  I guess I have lived with it this long, might as well hang on until September!


I realize that I am focusing on the bad things that are happening to me.  But I also have good things happening too!  My wonderful neighbors, friends, and co-workers are providing meals for me and my family every Monday, Wednesday, and Friday.  What a blessing!  I am monumentally behind on my Thank You notes.  I hope everyone knows how much their generosity has touched my heart and helped my family.


Also, there has been so many friends who are beyond generous and have gotten tested to possibly donate their kidney to me.  Wow, it sure means a lot that you like me that much!!  I feel honored.  I feel humbled.  I also feel not-worthy.  Have I been a good enough friend to each of these people?  I hope so.  Once I am well again, I'll be able to reach out more to my friends.


I have also had many many generous donations to my Kidney Transplant Fund.  This fund helps with medical bills now and in the future.  I am on I think 13 medicines.  That's a lot of money each month in co-pays.  Plus each time someone gets tested for me, it goes through my insurance and I get the bill.  Trust me, I am thankful to have those bills!  Very thankful!  Anyways, I have many blessings to count.

GFR

So, my kidney function numbers have been falling...

• November 2011 - GFR was 26
• December 2011 - GFR was 19
• December 2011 - CC was 20
• January 2012 - GFR was 20
• February 2012 - GFR was 17
• March 2012 - GFR was 18
• April 2012 - GFR was 15
• May 2012 - GFR was 14

GFR is the glomerular filtration rate of my kidneys.  It's the rate at which my kidneys filter my blood.  This number should be around 100.

CC is the creatinine clearance.  It compares the level of creatinine in the urine to the level of creatinine in the blood.  This number should also be around 100.

Both of these can be used to test the relative percent function of the kidneys, since it is on a 1 to 100 scale.  So, you could say that right now I have about 14% of normal kidney function.  Therefore, I have a lot of toxins building up in my body: Uric acid, creatinine, potassium, and phosphorus.  I also don't have enough red blood cells and platelets, so I get an injection once a month that stimulates the bone marrow to produce more red blood cells.  I'll complain about the injection another time.  :)

Basically, a bunch of things are out of whack right now.  Leaving me feeling tired, sluggish, sore, achy, and sick.  I take 13 daily medications right now... 7 of which cause dizziness and drowsiness.  Some of these I take 2 or 3 times a day.  So, I am a little foggy-headed and find it hard to concentrate like I used to.  Toward the end of my time at work, I started taking some of these meds.  I could really tell that my ability to think clearly and concentrate on my work was becoming affected.  I have been home from work 8 months now.  I find that the foggy-head and concentration problems are easier to handle here at home.  Getting the kids off to school and making grocery lists don't require much mental math or analysis, so I can deal with it.  ;)

Feeling crappy

It's hard to get out of bed these days.  I feel foggy, slow, sluggish, achy, and sore every day.  I hate to take pain meds so much, but its the only way I can feel good enough to go about my daily obligations at home.  Even eating is a chore.  I am more tired than hungry, so tired wins and I stay in bed, or on the couch.  I just don't have much of an appetite.

Me

This is a blog about me.  You don't have to read it.  It's not like Facebook posts that are right there in your face.  I don't like to burden people with posts about how I am feeling on Facebook.  I don't know, it just never felt right to do it there.  I don't want to come across as a Debbie Downer.  To me Facebook is for light-hearted conversations and funny observations.  When I read some repeatedly negative posts from repeatedly negative people, I hear the "wah-wuh" sad trombone sound in my head.  Of course, Facebook is a great place to give out important info because of it's ability to reach everyone, and Facebook is what Facebook is.  Entertainment.  I don't want to knock it.  On the other hand, this page is for people who truly want to know how I am feeling and what I'm thinking.