Scary Moments

My dialysis catheter was infected for quite some time, and for some reason my body just keeps wanting to hang on to this infection.  I've had mega-doses of antibiotics for the past month, and I just can't seem to kick it. 

My nephrologist wants me to start coming to dialysis three times a week for the next few weeks, which I'm THRILLED about.  Great--I get to feel like death three times a week now instead of two! :)

So, last Saturday I went to dialysis for two hours.  Fine. 

Yesterday, I went again--my normal time.  I fell asleep for a bit and when I woke up, my first bag of antibiotics was done.  The nurse came in and was about to start my second bag when I started feeling really strange.  Completely out of control...  I couldn't breathe right, I started vomiting, had a SPLITTING headache and just felt not right.  My blood pressure tanked and was at 80/50, which is REALLY low for me.  The low blood pressure was the cause of the odd feeling.

They gave me some saline and stopped the antibiotics.  It all went away after a few minutes, but I was shot for the rest of the night. 

This morning, I woke up with every intention of heading to our 7 a.m. jazz ensemble class, but puked and puked in the shower.  Not good.  Our head football coach has offered to sit in with my students if I ever needed him to, and he graciously did this today.  It's nice to have support...and who knew it would come from the football coach?  He's a great guy.  We're fortunate to have him.

Good news...only 19 more dialysis treatments! :)

Are You Okay?

So I throw up.  A lot.  It's a rare day when I don't at least dry heave several times a day.  (Like you all wanted to know that, but I'm telling you anyway.  And I do have a point...)

I'm not sure if it's the meds I'm on, or dialysis, or just a general state of not-well-being, but I feel nauseous most of the time. 

My vomiting episodes are usually started with a cough of some sort...let's call it the dry heave before the storm. :)  When I cough, my kids instantly ask, "Mom, are you okay?" 

This happened on Tuesday when Ian and I were on our way home from school.  I started gagging a bit and then started vomiting a bit.  After the episode was over, Ian asked, "Mom, are you okay?"

I started tearing up a bit and told him that what I'm most excited for about getting a new kidney is that my kids won't have to worry about me anymore.  I told him that, while I love that he's worried about me, and I know that he cares about me, it should be me that's worried about him.  The roles have been reversed for the past nine months.  I'm so ready to be a good mom again.

I love my children more than I can say.  They have been so strong and amazing through this whole thing.  It would be easy for them to complain and whine about how sick I am, but they don't.  I have been so blessed with the two most amazing kids any mom could ever ask for.  I hope someday we can look back on all of this with fond memories of how we grew together as a family.  It's what I wish for every single day.

Late Night

For some totally obscure reason, I couldn't sleep last night.  I think it was well past midnight by the time I actually fell asleep, and then it was a fitful sleep. 

I'm usually asleep by 9:00 or 9:30, so I miss the late night talk shows.  Last night, I was flipping through the channels and stopped on David Letterman's show.  He had Michael Douglas on, and I was intrigued by what he might talk about, as he was just recently diagnosed with throat cancer.

Of course, he was there to promote his new movie, so there was a lot of talk about that, but then Dave started asking him questions about his diagnosis and treatments.

I was a little taken aback by Michael Douglas' appearance.  He looked gaunt and like he'd lost some weight.  It was especially noticeable when they showed the clip of his movie, where he looked robust and healthy. 

As they started to talk about his treatments and his prognosis, I was impressed by his attitude.  He seemed very determined to fight it, and had a great outlook.  Instead of taking a "woe is me" attitude, he seemed almost "ho-hum" about the whole thing.  Now, I realize this may be an act, but it seemed genuine to me.

I feel confident in saying that this outlook will be his key to success.  I am again the proponent of saying that attitude determines EVERYTHING in life.  Cancer is a terrible thing, it reeks havoc on everything it comes in contact with, but how you face it determines how you will beat it.

I'm not really a fan of Michael Douglas' work...most of his movies are out of my ethical league...but I do hope he'll recover for the sake of his wife and children.  As I said before, if he beats it, it will be because of his great outlook.

Motivation?

I don't really have a lot to say today, but I wanted to say something, so here goes...

Friday is our first home football game, and I'm more than a little concerned. 

I'm not sure what it is this year, but it's just not coming together.  The students don't know their sets on the field, they don't know when they're supposed to move and when they're not, and the music isn't sounding as good as it was a few days ago.

I wish I knew what could make a difference.

I got pretty upset and disgusted at Tuesday's practice, and told the band that if they didn't shape up, they'd embarrass themselves on Friday.  I told them that they're not living up to the standards of the BMHS marching band. 

I think this may have lit a fire under some of them, as they've all called extra practices for today and tomorrow.  It goes back to what I tell my leaders--you can't MAKE students want to do better, they have to want to themselves.  No one can do it for you.  This is the most frustrating thing about being an educator.

I just don't want to put a "half-baked" product out there Friday.  It's just not acceptable for me. 

Meanwhile, I'm dialysis catheter free for today.  Not that it feels much different, as it's become such a part of me the past seven months.  It does feel weird to look down and not see tubes hanging out of my chest.  I wish I didn't have to go back tomorrow to get a new one put in.  If all goes as plan, I should only have 23 more dialysis treatments...but who's counting? :)

I just found out that I have a great sub that can take over while I'm out.  This is SUCH a relief!  I was really worried about what was going to happen while I was gone, as the only available music sub was asked not to come back last year.  I'm glad that I have someone I know I can count on.

Just Another Day in Paradise

I lost it today, and for really no reason at all...

Two weeks ago, while having my dialysis treatments, I started getting a fever and chills.  The nurse gave my Tylenol, and told me to go to the ER if the fever didn't go down.  I felt pretty lousy the next day, but not feverish, so I went about my day...

Next treatment, same thing...fever and chills.  They took some blood cultures at my catheter site to see if it was infected.  The nurse called me Saturday and told me that I needed to go to the ER right away to get IV antibiotics.  That was ER visit one.  I spent six hours there that day...luckily there was a "Star Wars" marathon on TV. :)

I got more antibiotics at dialysis the following Monday (August 16).  Tuesday was the day I broke my pinky toe--ER visit two.

Thursday (August 19)--dialysis, more antibiotics, and another set of blood cultures. 

Saturday, August 21 I had a band fundraiser and performance in Prescott all day.  Courtnie and I were together while Gordon took Ian to a football game in Flagstaff.  We left the event at 5:00 and went to do our shopping for the week.  My nephrologist called me while we were in Wal-Mart to tell me that my blood cultures came back positive for yet another infection.  (This makes three different types now...)  She told me I needed to head back to the ER for more antibiotics.  This makes ER trip three.

Yesterday (August 23) I was back at dialysis and getting more antibiotics when the nephrologist came by.  She said we'd need to remove my catheter, give it a few days to heal, and then put in a new one.

So...I woke up at 4:30 and headed out for the AKDHC surgical center in Phoenix.  I was SOOO tired!  Luckily, my good husband talked to me for a while to keep me awake.   I got to the center at 7:15, but didn't get taken back until 8:15.  I was ticked, as I needed to get back to school ASAP. 

They prepped me for the procedure, which involved cleaning the site and draping sterile towels over me.  The doctor then came in, gave me a few shots of lidocane to numb the area, (which HURT!!) and then started yanking and yanking on my catheter to remove it. 

I don't know if it was the pain, my tiredness, or just sheer exhaustion at having to go through this all, but I started to cry.  I lost it.  I just got tired of it all.  I wondered, yet again, when this was going to end. 

The doctor looked at me a little strangely when they took the towels off and saw my wet eyes.  It was all I could do to keep back the tears until they let me go and I could cry out loud in my truck.  I wondered again how much more of this I need to endure before I can just lead a relatively normal life.  I just want this to be over with.

I cried for a few minutes, then started for home.  I called my sister, Michelle, who cheered me up.  I'm so grateful for her...she listened to me, and even sent me a free Cold Stone! :)  She's so good to me, and has given so much to me already.  I'll never be able to repay her for the blessings she's given me and my family.  I'm so fortunate to have two great sisters who are also two of my best friends.

My catheter site is hurting pretty badly, but I'll live.  Thursday they will put a new one in, but this time I'll be under some kind of anesthesia--that should help.  I've been fortunate that my previous one has lasted so long, and I'm hoping this new one will make it until I can get my transplant in November.

My Pinky Toe!!

Yesterday was an interesting day...

We were having a GREAT rehearsal outside when a storm came in.  Normally, I wouldn't move inside for a little storm, but we got a pretty close lightning strike, so I decided it was time.  (It was pretty funny to see all of the football players hit the deck when the lightning hit....)

We moved inside and had a great full band rehearsal.  Music is sounding really good, and my trumpets sounded strong, which is EXACTLY what we need for the music we're playing. (music from "The Mask of Zorro.")

I ended rehearsal at 5:00, and Gordon had ended football practice early, too, so we went to pick up our kids from the Primary bowling party at our local bowling alley.  They weren't quite ready to go, so we sat down in some chairs and waited. 

A friend walked by, and Gordon leaned back to talk to her.  While he was leaning back, my foot wandered over near his chair.  (wait for it...wait for it....)  When he got tired of leaning back, he leaned forward to put all 4 legs of the chair down, and one of the chair legs (with all of his weight) landed on my right foot. 

After screaming "OUCH!" pretty loudly, he removed the leg of the chair from my foot, which immediately started to swell and turn purple.  I sat there for a bit, trying to regain my composure.  Gordon apologized PROFUSELY, and I kept telling him to just be quiet.  A few minutes later, I tried to stand and walk, but it wasn't happening. 

Gordon carried me out of the bowling alley--"here comes the bride" style.  I was pretty embarrassed. 

We went to the ER, where I waited and waited and waited until they took me back for x-rays.  Meanwhile, I'm hurting and worried about what I'm going to do if it's broken...how can I drive, walk, cope? 

Turns out I broke my pinky toe.  Not much you can do for that.  They "buddy taped" my toes together and gave me a boot to walk in for the next couple of weeks just to stabilize things and make sure I don't re-injure it.  I look really cool, and it's SO easy to walk in! :)

So, I ask you...what's next? :)

Blech....

I'm not sure I'm going to make it.

Every time I go to dialysis I get sick.  I feel nauseous and exhausted all of the time.  I'm so tired of feeling this way.

Last night I puked and puked and was so tired. 

Gordon looked at me this morning and asked if I can wait for my transplant until December.  I'm not sure that I can.  I think that perhaps the thing that's making it harder is that I know another option is out there.  Now that Michelle is a match, it's killing me to have to wait.

The problem is that I don't have ANYONE to take over marching band right now, and I just can't leave them high and dry.  I did that last year when I thought it wouldn't make a difference, and it just about drove me insane.  I felt so bad leaving the kids, and to them, this is their most important time.  I just wish I could clone myself and be in two places at once.

I just need to be done with all of this.