I've been away for too long. :(

I had initially thought to create this blog and update it consistently with the trials and tribulations of my dialysis journey.

Here's the thing.

I hate dialysis.  I'm angry about having to go through this and with all the problems I've had and am still having, the last thing I want to do is think about it when I'm not at that damn clinic.

I did get the PermCath removed.  I'm now permanently scarred where the Cath used to be.  The Nurses are still having problems sticking my fistula (although it is a LOT better than it used to be) and there is nothing that can be done about it.

There are only 3 or 4 Nurses at my clinic that can stick me reliably, and even then, on average of once every 4 weeks or so, they have difficulties and I end up being unable to finish my treatment that day.  The rest of the Nurses run in fear when they see me arrive because none of them want to have anything to do with my arm.

I'm down from the 147 kg or so that I was when I started dialysis back in February to a dry weight of somewhere around 132 kg.  That's a loss of over 30 pounds in 8 months and I am working hard to lose more and more so that I have a better shot at getting a transplant.  It's difficult though.  Thankfully I am not as diet restricted as most other patients and all of my blood work comes back really good each month.  I can still eat potatoes and cheese and bananas and so forth, but I do still need to find a way to get more protein into my body.

My Daughter Carolynn has also been diagnosed with PKD.  Not sure if I've mentioned that before or not.  She's only 18, so it will be decades before she has to worry about it, but I'm trying to pound it into her head now that she needs to start taking better care of herself so that when the time comes, she will be better off than I was when it was time for me to begin dialysis.

Our home situation has changed.  We're living on our own again, finally.  I'm having a lot less problems with skin breakouts, itching, and illness now, so that's a definite positive step.  I'm also able to eat a lot better again and that has helped with the weight loss (I'm down over 4 pounds in just the last month) and in every other part of my life.  I'm cooking again!!!  Not as much as I'd like, but more than I've been able to since we left Alabama.

I've started another blog... because hey, if I can't remember to post on this one, why not create another one that I can forget to post on as well?  The other blog deals with our budget and our menu plans.  So Tight We Squeak is the name of that one.  Stop on by and if you have tips on budgeting or menu planning, please leave comments!!!

That's it for now.  This is a non-dialysis day and I have now officially thought about it more than I ever want to on an off day.

Have a Happy Halloween!

Another Fistulagram on the horizon

I saw the Vascular Surgeon yesterday.  I'm scheduled for another Fistulagram on April 17th.  That's really the only update at this point.  This Fistulagram will help this surgeon determine exactly what he wants to do with my fistula.  Apparently the first time I had one, that Doctor didn't look at the part of the fistula that this Doctor wants to look at.  It's all greek to me.  I just know that I'm having to undergo another painful treatment on my arm before we find out exactly what needs to be done to 'fix' the problem.

My PermCath is still bugging me, but now it's more of an irritating itch kind of thing than anything else.  I had the top stitch taken out yesterday, so now I can at least move my neck a little more and sleeping is a little easier.  I just wish there was some other dressing they could use other than the plastic sheet they keep over it.  I've told everyone that the adhesive makes me break out and itch, but they just shrug their shoulders and explain that there is no other alternative.  Great.

In other news, Dan and I had a date night this past Sunday.  In August, we'll be celebrating our 10th Anniversary and in all these years, we've maybe had a handful of actual date nights.  What did we do for our rare night?  Did we go dancing and have a fantastic 5 course meal and so forth?  Nope.  We had THE most awesome date night in the history of date nights!  We went to Buffalo Wild Wings and watched Wrestlemania 28.  :D

What?

lol  Ok, so maybe that date night doesn't appeal to everyone.  We had a fantastic time though.  It was the first time either of us had ever been to BDubs, it was the first time watching a PPV somewhere other than at home on TV, and all told, we spent $15 less for our night out than we would have if we'd stayed home and ordered it on TV.  (Actually, we saved $25 if we'd ordered it in HD)

Carolynn is also gearing up to go to Prom.  This is only her Junior year, so she'll be going again next year as well, but she's really looking forward to this one.  The theme is Masquerade, so I've gotten her a beautiful feather mask, opera-length gloves, a beautiful clutch and, best of all, her first pair of actual heels.  We're a little concerned about that last item because after all, this is Carolynn we're talking about.  lol  Hopefully she'll practice enough that when Prom comes, she'll be able to get around without breaking her neck.  lol

There has been a lack of updates here as of recently because with the PermaCath, dialysis has been going really well.  Once they start sticking my arm again, I expect to be back full force.  :-/

Have a great rest of your week!

Glade Cling Wrap is genius!

Yesterday was my second time going to Dialysis since having the PermCath installed.  I had waited to shower until the morning and Dan helped me before he had to leave for work.  We were worried about getting the incisions wet, because apparently that can easily lead to infection since the cath goes basically right into my heart.

My friend Chris who is a Surgical Nurse told me to get a roll of Cling Wrap and cover the area with that before showering.  I was dubious at first because I'd never used Cling Wrap before but the package said it clings to every kind of surface so I bought a roll.  If nothing else, we needed more wrap for the kitchen anyway.  :)

As it turned out, the Cling Wrap works perfectly!  My big mistake was pulling off a HUGE piece.  lol  I was able to cover from my jaw down past my boob.  Next time, smaller pieces covering just the areas it needs to will be even better.  =P

Anyway, we put the shower chair in the tub, Dan hooked the shower hose up and I sat there while he washed my hair and then I was able to finish my shower.  Success!

After that, he left for work and I went back to bed for a few more hours.  The van showed up about 11:10 and dialysis went very smoothly.  The PermCath, as scary as it is, actually does make the process of dialysis so much easier.  I don't care though.  I still want it out of me.  The sooner we get my fistula to the point where the nurses can effectively stick it, the better I will feel.  I hate this damn thing sticking out of my chest. I can't sleep comfortably, I still can't turn my head very far due to the sensation of pulling, all in all I hate it.

There is one other thing I want to bring up...

Kidney disease can also have an effect on other bodily functions.  In my case (and many other's) it causes real bowel problems.  I no longer remember what having a 'normal' bowel is like.  Generally I either have no problems, or I'm backed up for days.  I can normally guess what triggers a bout of being backed up.  I have issues with stress for example.  When I get stressed the whole works seems to come to a standstill.  For example, when my Mom died a few years ago, I was backed up for more than 9 days before I was finally able to go.

Also, whenever I have a surgical procedure that requires me taking anything stronger than Tylenol afterwards, I get constipated.  I normally remember to ask for a stool softener before going into surgery so that I can head off potential problems before they happen.  This time, I was told that I wouldn't need anything stronger than Tylenol, so I didn't bother.  I have a small stockpile of pain medication because in the past, when I have had more invasive surgeries, the Doctor prescribes me something, I usually end up taking one or two of the prescription and then switch to something like Tylenol because I really hate taking any sort of pain meds at all, let alone something stronger than OTC meds.

Anyway, I got home from having the Cath put in and the pain was really a lot worse than I was told to expect, so I took one of my 'good' painkillers.  Then, after about 8 hours, I was still really uncomfortable, so I took another one.  Add to that the stress of the last week and BAM!

So remember, if you have kidney disease, make sure you try to get a good amount of fiber in your diet.  If you have surgery that requires prescription pain killers, ask for a stool softener.  Constipation is no fun and it can be dangerous.

Just something else you never really think about.  :-/

PermCath will make dialysis so much easier... NOT

Today was my first time with Big D using my PermCath.  The nurse plugged me in in reverse because she felt that it would go better that way.  The arterial side was a little sluggish when trying to pull from it, so she pulled from the venous instead and things were ok...

Except...

It's a brand new cath and I love to clot.  They ran me for about an hour with the alarm going off literally every 5 minutes until they finally decided to put some clot buster in each side to see if that helped.

I had to sit for an hour with the clot buster in the cath.  Thankfully I had taken a pain pill before going in so I was able to fall asleep and stay asleep most of the day today.  I didn't even realize the hour had passed until the damn alarm they set woke me up.  I almost lept out of the damn chair it scared me so bad.  hehe

After that, everything flowed great though.  I ran for another 2 hours and they pulled a little over 4 pounds of fluid off altogether.

I still have pain at the incision site and I'm still taking some pain medication as of tonight, but all in all it was a much more pleasant experience than I've had thus far.

Here's today's pics and video.

Home from Surgery

This is what my Cath looks like.  Just like normal, red is arterial and blue is venous.  The nurses at the clinic will change my dressing tomorrow and clean it up while I'm in the chair, so hopefully it will look far less gruesome tomorrow.

I have no idea how to sleep with this thing in, but I suppose I'll figure it out.  :-/

My First Video Blog Entry

Correction. Surgery on Monday morning instead.

As it turns out, I'm going in for the PermCath surgery on Monday morning rather than doing it this weekend.  They will probably also send me for a treatment as soon as it is in place.  Then I'm back to my Tuesday, Thursday, Saturday schedule for a while.

Who's not looking forward to Monday?  THIS GIRL!  :(

Well crap.

I'm having a more difficult time than usual collecting my thoughts, so this is going to be even more disjointed than normal.  I apologize in advance.

When I ended my post yesterday, the plan was that I had to be at the hospital at 9:00 this morning for a Fistulagram.  Later I got a call from the Vascular Surgeon's office saying that instead, I needed to be at their office at 12:30 for the procedure which they would do there at the office.  Huh?  I was told I would receive a phone call in the morning with more details.  Great.

I spent last night powerleveling my Husband's Warrior from level 23 or so all the way up to level 38 (Yay for EQ Hot Zones!) and during all that time I thought long and hard about having another Fistulagram done since it had only been 3 weeks since the previous one.

This morning my phone rang and it was the Surgeon's office calling to give me the final details.  I didn't mean to, but before I knew what was happening I become this weeping, sobbing, hysterical person who was begging not to have another procedure done on my poor fistula.

The nurse didn't understand why I was so hesitant until I asked her why I needed another one when I had literally just had one done a few weeks before this.  She had no clue what I was talking about.  Yep, that's right.  This Doctor did not have any record of my having the Fistulagram a few weeks ago, yet the Doctor who preformed that one is in the SAME OFFICE.

I pleaded with her to just do an ultrasound or something instead.  My arm is aching like you would not believe and it has just been unsuccessfully stuck 3 days in a row.  I did not want to have it stuck again today and then have to stick it again tomorrow for dialysis.  Finally she told me to just be at the office by 12:30 and we'd talk about it then.  In the meantime, she would gather all of my records so they would have the entire story instead of bits and pieces.

I called down to Alabama to the Doctor who put the fistula in and had them send my records to this Doctor as well so that finally, all of my records would be in the same place at the same time.

When we got to the office, I had to wait until after 1:00 for the ultrasound (keep in mind I had had basically no food or drink since dinner the night before because we still didn't know at this point if I would have to have anything else done or not).  The ultrasound showed that my fistula is, as we already knew, awesome.  The flow is perfect, it's actually not deep at all (contrary to popular belief) and everything with it actually looks really good with one exception.  There is some sort of crazy bend in it, which everyone has known about since my first time getting dialysis at the hospital.  Apparently though, that wacky bend is causing a lot of grief because the nurses just can't figure out how to get a good stick because they don't know exactly where it is.  As for the fistulagram, thankfully the Doctor agreed with me that there was no reason to have it done.

He asked me a few questions like, "Do you still make urine?" and "What is your Potassium?"  I told him that I still make (in my opinion) quite a bit of urine and my Potassium, rather than being high, is actually low even with a Potassium supplement and eating a banana each day along with potatoes whenever I felt like it.  He then asked me, "So why are you on dialysis?"

Uh?  Because my Nephrologist told me to?  It's not like I woke up one day a month ago and said, "You know what would be fun?  Having needles repeatedly jammed into my arm over and over and over again in a futile attempt to cause me cramping and dizzy spells!"  Uh no.   That's not how it happened.  Trust me.

He told me that my arm definitely needs a rest.  It is so swollen and inflamed from all the infiltrating and bruising that it's no wonder nobody can get a good stick.  He wants me to rest the arm for 2 weeks and then see me again to evaluate it.  At that time he will either decide to open up the arm and physically move the fistula and straighten out the stupid bend in it or, if he determines it necessary, he will build a whole new fistula in the upper part of my arm.  I'm really hoping he decides to go with the first choice.

In the meantime though, I needed to figure out if I still needed to be getting my dialysis treatments.  If I did, then I would absolutely have to have a PermCath installed.  It would only be temporary of course, just until my fistula was truly ready to be used, but it was my only option other than not getting treatments at all.  I left the office with the understanding that I would go straight to my Clinic and talk to them about my options.

I got there and we did talk about it.  As far as I was concerned, I was going to forgo the PermCath and just not get treated for the next month or so and in the meantime, the Surgeon could go in and move the fistula around and make it easier to stick.  (I had misunderstood some of what they had told me while I was in the office... for example, I didn't catch the whole 'or build a new fistula in your upper arm' bit.)

The Clinic would have to get with the Nephrologist to decide if that course of action was appropriate and they would let me know but ultimately it was up to me to make the final call.  I left out of there feeling happier than I've felt in awhile, because in my mind, I would be able to stop getting poked with needles long enough for my arm to heal and then they would reposition my fistula and then, like magic, I would never have another bad day again.

Reality is a bitch however...

The clinic phoned me shortly afterwards to tell me that the Neph had said that I definitely needed to continue with dialysis and that I should definitely NOT take a break of several weeks up to a month.  I needed a PermCath ASAP and I needed to keep on my schedule.

Soooo...

The way things stand now, I'm going in tomorrow morning to have the PermCath installed.  I'm terrified.  I just keep reminding myself that it's a temporary thing and that as soon as my fistula is 'fixed', they can yank that son of a bitch out of me and we can get back to poking my arm.

Doesn't matter.  Still terrified.

I'll post again as soon as I'm up for it.  Until then, let's just hope they can pipe "Moves like Batman" into the OR while they install the damn thing in my chest...  I'll need all the smile help I can get.  :-/

And... Third Strike. (Also a shout out to Chad and Angie!)

Today was a crap day all the way around.  I got up, got my shower, applied my EMLA, made myself a lunch of chicken salad, a banana, and a big glass of water (I'm supposed to eat lunch every day-something I NEVER used to do-because I can't eat while onboard the machine.), turned on SportsCenter and relaxed for what I thought would be about an hour until the STS Van came to get me.

10:45 came, still no van.  11:00 came, still no van.  A few minutes after 11, my driver called to say he'd be a "little" late and would be here by about 11:20.  11:30 came, still no van.  I called my Dialysis Clinic to let them know that I was going to be late due to STS.  11:40 came, still no van.  I was getting ready to call the Clinic again when he showed up.  It was about 11:50 at that point.  I got to the Clinic, weighed in (hadn't gained any weight at all if you believe the scale there... however I'm not sure I have a lot of faith in that thing), and got all my crap set up and readied myself for a great day of dialysis.  Yeah, I know...  but I was trying to stay positive.

The Nurse from the Access Center was there and she was just going to watch one of my regular nurses give it a go to see what happened.  Today, for whatever reason, my arterial (you know, the one that never has any problems at all) decided to be a pita.  First needle was a miss and then a clot.  The Access Nurse took over for the 2nd try and she got it in with little to no problems and we got my labs drawn and got it flushed.  Yay!  They both said that it 'felt' different though.  Of course I didn't feel anything different, so I have no idea what they were talking about.  As long as it doesn't hurt, I'm pretty much OK with whatever...

Now it was time to stick that little venous bitch.  That needle went in, tried really hard to clot, but in the end they coaxed it enough that it pushed and pulled fine!  Yay!!!  Only 3 sticks and no pain at all!!!  It WAS going to be a good day!

And then...

They hooked me into the machine and started it up.  Within a few minutes my alarm started screaming.  Uh oh.

I'm still not entirely sure what the problem was, because when they used a syringe, my arterial pushed and pulled really well.  When I was on the machine though, my pressure was whack-a-doodle.  Rather than continue to try, the decision was made to just call it a day again.

I talked to my Nurse a little more about the PermCath.  I'm still very, VERY opposed to the idea, but I don't know how much longer I can put it off.  It was decided that I need another Fistulagram (see previous entry from a few weeks ago) to figure out what's going on.  I may need an Angioplasty if my arterial has become too narrow.  I was told not to eat or drink anything (this was approximately 12:30 this afternoon) for the rest of the day because I was having the procedure done this evening.  Bleh.

Dan left work early to come and get me, we got home and I went to sleep.  When the phone rang at almost 4:00, I thought that was my call telling us to come to the hospital.  Nope.  It was the hospital, but they were calling to tell me what time TOMORROW to come for my procedure.  I said, "Tomorrow?"  The woman seemed confused.  "The Doctor's office didn't call you?"  Of course not.  It's only a potentially life-saving procedure and I'm only terrified out of my skin... why on EARTH would the Doctor's office call to fill me in?

So as it turns out, I was going to have to be at the hospital tomorrow morning at 9:00 in the morning for the fistulagram at Noon or so.  Fine.  We immediately left the house to go to the grocery store and get some food for supper.  While we were out, my phone rang again.  This time it was the Doctor's office telling me that rather than go to the hospital for my procedure, I would instead be going to the Doctor's office and having it done there at 1:30 tomorrow.  Mind you, I'm still not supposed to eat or drink anything after midnight tonight, but yeah, my procedure won't be until at least 1:30 tomorrow afternoon.

Yeah, guess who's going to make sure to eat a nice breakfast tomorrow at about 6:30 a.m.?  This girl, that's who.

All in all, I'm so over this crap.  I want a fistula that works.  No, scratch that.  I want to have never inherited this damn disease in the first place.  I hate PKD.  I hate it with a passion so red hot that it burns.

And that was my day.  Now I'm home and Hubby and I are getting ready to spend the evening playing Everquest (Remember folks, it is now FREE TO PLAY!!!).

Finally, as for my shout out to Chad and Angie:

Thank you two so much!  You guys make my days bearable.  Yesterday, even though it was a horrible day and I was in tears for quite a bit of it, you guys helped me through.  Let me share that part of my day with you.  :)

My ringtone is "Moves Like Batman".  I got a phone call yesterday in the middle of all the bullshit (my Daughter's Doctor telling me that she doesn't need her gall bladder removed after all) and the nurses started talking about "Moves like Jagger".  I explained that my tone was Batman, not Jagger.  They had no idea what I was talking about, so of course I pulled up Youtube and showed them this video:



Everyone that saw the video absolutely loved it and several folks asked me for the exact spelling of "Screen Team".  :)  I told them to just search YouTube for "Moves like Batman" and then follow the links to see all of Chad and Angie's brilliance.  :)

I left out of there with at least two of my nurses singing the chorus over and over again.

Today while I was sitting in the chair, in the middle of all the fail, my nurse was telling some of the others about the video so of course I played it again for even more of them.

Even on the worst of days, Chad and Angie can make me smile and for that, I sincerely thank you guys from the bottom of my heart.  I don't comment on the videos and such, (I don't know why...  I always mean to, but then I get distracted by something) but I watch them all and I love you guys.

Alright gang, Norrath is calling me.

I'll post something else tomorrow if I'm up to it after the Fistulagram.


Oops, forgot to add my photos...

This is all the crap that is laid out when we first get started.  I have iodine on my arm, you can see the arterial (red) and venous (blue) lines to the left of my arm.  To the right are the tubes to draw my labs, 2 syringes with medicine to further numb the injection sites, and alcohol swabs.

Here's one of my needles next to my hand/finger.  I have large hands btw...  I'm almost 6' tall, so I've got the kind of hands you would expect a woman my size to have...  Those needles are huge.

This is the package that the needles come in.  Each package has 2 set ups.  One red and one blue.

And finally, here's something dedicated to all my Nurses... 

2 Days of Fail in a row...

So yeah.  Yesterday the arterial went in like nothing.  It was beautiful.  The venous however...  what a little bitch that vein is.

My nurse stuck it 3 times and all 3 times I clotted off the needle before she could even get it started.  At one point (and no, I do NOT have a photo of this) the clot was so big that they wanted to show me.  She pushed it back out of the needle onto the paper towel thingie that they keep under my arm and it was just like jello blurbling out of the needle.  *urp* *gag*

Yeah.  That was one of the most disgusting things I've ever seen.

After the 3rd venous fail we packed me up and sent me on my way.  I want to make sure to mention that yesterday, even with the fails, there was no pain at the time it was happening.  No tears and no pain, just no blood.  :-/

I had to come back today and today was a different story altogether.  I got there today and they had a special guest stick me.  I don't know what he was thinking exactly because he stuck the arterial just fine, but then didn't flush it with saline...  I even said to him, "You need to flush that with saline or I'm going to clot it off".  Guess what happened...  lol  I clotted it off.

The venous was horrible again, as usual.  I think he got it, but then it clotted off immediately.  I don't remember because there was pain involved and tears and me wishing I didn't have to go through this crap.

This time they called someone else in to try and she ended up watching while my nurse did the sticking.  Arterial went in fine as per usual and this time, because she knows me, she flushed it immediately.  The venous however...  UGH.

They got it stuck, but it HURT.  Then, they hooked me up to the machine and started it up and the pain only got worse.  Like REALLY bad.  Like, tear the needles out and get me out of here bad...  That happened of course, after I had called my Hubby back to my chair because we thought everything was going to go fine.  So yeah, he got to see that.  I don't like anyone to see me in that situation, least of all my Husband.

Some fiddling with the needle seemed to fix the problem but not before I was told that they want me to consider a PermCath.  That about sent me over the edge.  I don't want one.  I've thought more and more about it and there is no way, when I have a perfectly fine fistula in my arm, that I'm going to let anyone stick anything directly into my heart.  It is NOT happening.

This fistula works.  It's been successfully stuck more than a few times now.  What I need are nurses that can do it on a routine basis and if the nurses at my current clinic can't do it, then by god I will go to every single center in the greater Chattanooga area until I find a team that can do it before I will even consider a PermCath.

Anyway, they fixed that issue by flipping the needle and turning the speed down and things seemed to be going ok.  I sent Dan home and started to relax...  until I started having problems getting my breath.  They gave me oxygen and that was fine until...  I got cold.  I don't mean a little chilly either.  I mean I was bone chilling, shaking uncontrollably, freezing.  They gave me more blankets and even warmed up the fluids that were going back into me through the dialysis process and eventually I warmed up enough to fall asleep.

And then I clotted off the machine.  They changed out the works and hooked me back in.  And then the venous blew.

And then I went home.

I have an ice pack on now and I'm going to use a heating pad in the morning.  And then, tomorrow afternoon, we're going to try the whole damn thing over again.

People, I can't stress this enough... Take care of your kidneys!  You do NOT want to go through this.

Distractions...

Saturday's Dialysis session went well.  There was another nurse there who only comes in to this clinic once every couple of weeks.  She had heard all about how many problems the others had trying to stick me, but she had not personally experienced the horrible experiences, so she just treated me like any other patient.

On the one hand, she came off rather cold, but on the other, she got me stuck on the first try each.

She also used size 15 needles instead of the 16 gauge that have been used up until this point.  The needles went in and the session itself went great.  My blood pressure never bottomed out, I didn't need oxygen and I didn't clot off the machine!  Yay!

She also pulled over 5 pounds of fluid off of me.  That was the biggest amount of fluid loss to date at one sitting.

Everything was awesome, until...

They pulled me off the machine, I hardly bled at all, they bandaged me up and 15 minutes or so after pulling the needles, I was out the door.  Dan and Carolynn had come to get me and we stopped for dinner on the way home.  I was fine when we got to the restaurant but by the time we got to the counter and ordered and I got my cup, things went south really fast.

I took my cup to the drink fountain to fill it up and by the time I walked that short distance, my ears had started to ring, I was dizzy, and I felt like I was going to throw up.

I went to the table instead and sat down, laying my head on my good arm, but the problems only intensified. After about 5 minutes I just had Carolynn go back up and tell them to box our order To Go and we left.  I got home and made it to my bed before passing out for about 2 hours.

As it turns out, apparently that can happen if they pull too much fluid off at once.  So, now we know.  :(  There was no cramping this time though, so I guess I'm not down to my dry weight yet?  Hell I don't know.  I'm going to tell the nurses about it today.

Oh, one other thing that happened...  I have to drink a protein shake every time I go to dialysis too.  We learned this last time that I need to drink my shake at the END of my session.  lol  They gave me my shake at the beginning of the session and then, with 2 hours left, I HAD TO GO!!!!  I don't know if you've had that experience, but when I have to go, DAMMIT I HAVE TO GO RIGHT NOW!  hehe  (I had my gall bladder out years ago and I still have problems when I eat certain foods.  Apparently protein shakes are among those certain foods)

They actually had to rinse me back, unhook me (leaving needles in place and just capping off the short tubes) and let me go to the bathroom with the set up still in place.  It was horrible and scary and I never want to have to go through that again.  So yeah, no more protein shakes at the start of my sessions.

Ok, almost time for the van to arrive for today's session so I'll wrap this up.  The reason I didn't post on Saturday is fairly obvious.  As for what has kept me away for the last few days...  Everquest is now free to play.  :)  I've been busy killing stuff with my Husband.

More later!

Forgot to post yesterday

Yesterday was a successful (sort of) day for dialysis.

The specialist from the Access Center was there and she was able to get the needles in on the first try for each, but the venous line was still uncomfortable.  It was pulling and pushing fine though, so they left it in and away we went.

When I weighed in, according to the scale, even though I hadn't been run for 5 days, I had only gained 2 pounds.  I questioned this, but they waved it off saying that since I still make urine, that would account for it.  My blood pressure was fine but my heart rate was up again.  Gee, isn't stress fun?

Anyway, the needles went in and dialysis started with no problems.  The venous line was still a little uncomfortable, but it was probably due to the bruising and trauma left over from Tuesday's epic failure.

I was onboard for about 2 hours when I again began to feel short of breath and the panic started to set in.  I got the attention of one of the nurses and sure enough, my blood pressure was really low.  On went the oxygen and the nurse fiddled with the machine for a minute.  The next time they took my BP, it was back up to where it should have been and I could breathe easier.  I kept the oxygen on the rest of my run though, just in case.

My alarms were going off every few minutes, but the nurses kept telling me it was just my arterial flow being finicky.  I had a feeling that they were just glossing over a bigger problem, but kept my mouth shut.  Sure enough though, with just over 30 minutes to go, they finally told me that I had clotted off the machine again.  I told them to just pull me off and call it a day rather than put a whole new set up on the machine.

When I weighed afterwards, I weighed exactly the same as when I had arrived.  That's when they told me that the scale was obviously wrong because not only had they pulled more than 3 pounds of fluid off of me, but other folks who had dialized that day had actually left weighing MORE than when they arrived.  lol  Yeah, so much for an accurate weight that day.

I need to invest in a scale here at the house so I can better keep track of my fluid gain from day to day.  I just hate the idea of weighing myself every day.  bleh.

Tomorrow is Saturday and I don't know if the person from Access is going to come in to stick me or not.  If not, then I don't forsee having a successful run.

I'll try to remember to post when I get home.  Depending upon how things go, it may or may not happen.

Oh, and for those of you that read the comments on the previous entry, here is more information than you really want on Hemodialysis Catheters.

Like I said, I REALLY don't want to have to go this route...  :(

Terrible Day. :(

I faced today with a positive outlook.  Got up, prepped supper ingredients for my Daughter so that when she got home all she would need to do would be throw everything together and toss it in the oven.  Took my shower, put on my EMLA cream, ate lunch and packed my bag for Dialysis.

The van came to get me nice and early, I arrived at the clinic and weighed in and had only gained 1 kg since Saturday, went to my chair, unpacked all my crap, spread out my blanket and waited while they took my standing blood pressure.

As the machine was taking my pressure, I looked around for 'my' nurse.  Thus far, the only nurse at the clinic that has successfully been able to stick me.  I did not see her.  I felt the panic start in the pit of my stomach, but I tried to fight it back.

The alarm on the machine went off however because my heart rate was much higher than it should have been.  I didn't want to tell the nurse that the reason was my panic over not seeing the nurse I trusted.  I don't want to make the other nurses feel bad, and I know that I have to get used to other people sticking me because they all need to learn how to deal with my fistula.

I sat down in the chair, covered up with my blankie, took a few deep breaths and waited.  The nurse that came over was the nurse that on one of my previous fail days, had inadvertently really hurt me by pressing really hard on my horribly bruised arm.

She took her time and felt around for a long time trying to decide where to stick the arterial needle.  I thought that was sort of odd, since the arterial portion of my fistula is the easy part to find, but I didn't say anything because she's the nurse... therefore she would know...

When she finally decided to stick me, she did so in a really strange spot.  She stuck really far up towards my hand and at least 1/2 an inch below the scar.  Nobody had ever stuck me there and as soon as she did, I learned why.  She went in and before she could find the fistula, she apparently found a nerve.  The shock of pain was HORRIBLE.  I toughed it out though, figuring that once she got the needle in, the pain would stop. She eventually found the arterial but the pain, rather than stop, only intensified.  At some point, she moved the needle just slightly and I almost came up out of the chair.  When that happened, she reacted by pulling the needle out immediately.  Well, needless to say, she was already in the arterial so when she pulled the needle, I got to experience spurting blood first hand.  Within moments my arm was sitting in a pool of my blood.

At that point I got scared.  I started crying because I just couldn't take it any more.  Between the pain and frustration and now, downright fear, I just couldn't hold the tears back.  I don't bleed.  That's kind of my thing.  The thing I was always so happy about.  Sure, I bled a bit the last couple of times when I finished dialysis, but NEVER like this.  I'd never seen so much blood.

She held pressure for a long time and finally the bleeding stopped.  When she tried the second needle, she moved back on my arm about 1/2 inch from that first attempt, but still about 1/2 inch below my scar.  My arm was still screaming in pain, but the second needle went in and seemed to be ok... until she flushed the line.  More pain on top of the already there pain.  It was really bad.  I just figured it was because my arm had already been traumatized and again, I just told myself that once I was onboard everything would settle down.

Then it was time for the venous stick.  Again, for whatever reason, she decided to go into the venous portion of the fistula less than an inch from the arterial needle she had in.  To do so, she had to press on the needle already in my arm.  It was, again, horrible.

She also missed.  :-/  Oh, and she infiltrated...

At that point I asked her to stop.  I told her I just wanted to go home.  I didn't want to do this any more today.  My other nurse, the one that has been successful at sticking me came in and we pulled that venous needle and she tried a 4th time.  She got it, but before she could make it a solid line and get it flushed, I clotted it off.

I was done.  I begged her to just pull the arterial as well and let me go home.  I would try again Thursday, but I couldn't take any more needles today.  When she pulled the venous out, again I bled like a stuck pig.  I covered another towel in blood and that of course prompted even more tears.  I never thought of myself as a wuss before, but this stuff is making me into quite the crybaby.

They clamped me off and iced me down while I texted Dan at work and asked him to please come home so he could get me.  Thankfully he has a wonderful Boss who understands medical problems and she told him to go and to be sure to let me know that she would be praying for us.

While I was waiting, all clamped and iced, another nurse came over and asked me if I'd gotten my Hep vaccine.  I hadn't.  I told her to go ahead and give it to me but she felt so bad about what I'd been through that she wanted to wait until Thursday.  Well, Thursday I'm getting the Pneumonia vaccine, and I really didn't want to have both in one day so I told her to just go for it.  I don't have a problem getting vaccines at all.  Those needles don't phase me.

I got my vaccine and then noticed that all the nurses had disappeared.  Apparently they all had to have an impromptu meeting about me and my fistula and the trauma they are inflicting on me.  I don't really know what the outcome of that meeting was, but I do know that on Thursday when I go back, the specialist from the Access Center is going to be there to stick me.

I'm tired of this.  I'm tired of hurting.  I'm tired of crying.  I'm just all around tired of being sick.  I don't know what the solution is, but they need to figure out something.  I don't know how much longer I can do this.

These top two pictures are of my arm before I went to Dialysis today.  The bruising is almost cleared up, or well, ok, it's not as bad as it was last week anyway.

Here I am clamped and iced.  You can't really see how far up on my arm the arterial stick is in this photo unfortunately.

Here's a shot after everything was said and done.  At this point all the blood had been cleaned up and I had completely stopped bleeding because I'd been clamped for a good 20 minutes or more.  See those two red spots under my scar?  Those are the arterial sticks.  You can't really see the venous sticks, but I think that's them up there on the scar itself.  You can see that my wrist was already starting to bruise up again at this point.

Here's hoping that Thursday goes better.  :(

Yay! A very good day!

Today was my 6th successful time on the dialysis machine.  Even though I've been trying 3 times a week since The Tuesday after Valentine's Day, I've only successfully been treated 6 times.  It has been such a frustrating process!

Today I went in full of apprehension and expecting the worst.  Dan and Carolynn both came with me and got me settled into my chair.  I sent them back into the waiting room for the needle process itself because if that went badly, I didn't want to subject them to it.  After both needles were in however, I called Carolynn back in so she could watch the rest of the set up process.  The nurses explained things to her and answered her questions no matter how silly she thought they seemed.

Once I was fully under way, they left and went back home.  I was onboard for almost 4 hours, my end weight was 138 kg which is right around my dry weight.  That equates to right around 304 pounds which is pretty close to what we think my dry weight is.  I didn't have any cramping today though, so I'm wondering if I can lose a little more fluid next time around.  I know that back in October, my weight was 290 at the Doctor's office.  That was before all of the fluid build up and so forth, so I have to wonder just how much of this weight is still fluid gain.  All we can do is keep working at it and waiting for the cramps.  Ugh!

As you may have noticed, I've started a list of blogs related to CKD and Dialysis over there on the right.  I will continue to add to the list over time, but there are so many sites out there that it is taking me longer than I thought to go through them all.

Well, I'm having my (apparently typical) bout of weakness and post-dialysis headache, so I'll sign off for now.  Tomorrow, Dan's Parents are coming through the area and we're going to meet them for brunch.  I'm so happy I had a good day today.  That will make it much easier to face tomorrow.  hehe

:)  

Even a good day is not without problems. :-/

Well, yesterday was dialysis day again.  This was my first time using the provided transportation to my session. The van didn't arrive until almost 11:30.  I had applied the EMLA at 9 am, so by the time the van arrived, I had started to worry that the cream would lose it's effectiveness by the time I got into the chair.  As it turns out, apparently the EMLA stays active as long as it's covered in the plastic wrap and then continues to work for about an hour after removing the wrap.  Whew!

When I arrived at the clinic and weighed in, I was still at the same weight as I was on Tuesday when I had my last failed attempt at dialyzing.  That's pretty awesome in that I hadn't dialyzed for a week and still only gained about 4 pounds.

The person from the Access Center was there and she got the needles in on the first try!

Getting ready to get stuck.  That iodine makes the bruising really stand out!  lol

Oh, and this was my arm before the iodine and so forth.  It's hard to see, but I'm purple all the way up to my hand.  Arm was still so sore I couldn't fully extend my arm as well.  I was NOT looking forward to dialysis.  

Got it on the first try for each needle!  Yay!  

There was a problem of course, because you know, I wouldn't be me if they could simply stick the needles in and have everything work perfectly.  bleh.  The arterial needle was no problem at all, but the venous needle, because the vein is so deep, kept setting off the alarm on my machine.  The nurses had to play around with it and try various ways of propping it up so that the pressure wouldn't be so high.

Also, because of the problems I've had, the nurses were using smaller needles and a slower pull rate.  My blood doesn't like that.  Remember, my blood likes to clot...  the slower they pull the blood, the more opportunity my blood has to clot.  Which is exactly what it did...

After about an hour and a half, I clotted off the machine.  Thankfully clotting off the machine doesn't pose a danger to me because the clots are not in my body nor do they have any way of reaching my body.  However, the machine gets gummed up and it kills the whole works.  

Since I still had about 2 hours to go, it was decided that they would just put a whole new set up on the machine and keep running me.

Here I am waiting to be hooked back up to the machine after they change out the works.  They don't have to pull the needles, they just clamp them off, flush them with saline and then rehook me to new lines.  If they had to restick me, I would have fought them I think...  

Here's a little video of my nurse rehooking me to the machine and what the kidney looks like as it fills with blood.  The abrupt ending was because the blood pressure cuff on my right arm started to inflate and when that happens, if my arm is bent, it hurts like hell.  So I cut the video off to straighten my arm quickly.  

Also, I found a new way to pass the time aside from reading the Kindle or watching TV.  :)  

My Daughter and I love Pokemon.  To that end, we both have 3DS units and Pokemon games.  I was unsure about trying to play with only the use of my right hand, but I gave it a shot and it works!  I don't think it would work as well on one of the earlier DS units that doesn't have the 'joystick' on the left there, but the 3DS makes it very easy to play Pokemon games one-handed.  Now, if only my clinic would get WEP WiFi.  :)  (I specify WEP because, while the 3DS works on any WiFi, the Pokemon games require open WEP connections in order to go online.  I'm pretty pissed with Nintendo right now...)

With about an hour left to go in my session, I began to realize I was having trouble breathing.  I didn't know what to think at first, so I didn't say anything.  After about 10 minutes though, I was really struggling, so I told my nurse and she immediately slapped oxygen on my and put some saline into my line.  Apparently my BP had dropped because they were pulling too much fluid at too fast a rate... or something?  I'm afraid I was a little too scared at that point to fully pay attention to what they were telling me.

After a fairly crazy time, and with about 20 minutes left to go in my session, I managed to clot off the machine again.  This time they just pulled me off and called it a day.  How friggin ridiculous!  

When all is said and done, they didn't get to pull as much fluid off as they wanted because of having to put so much saline back in due to clotting and so forth, but it was enough to make me feel better.

I waited an hour for the van to come get me and when I got home, Carolynn sat down in my bed with me and sat with me while I fell asleep.  

That was my eventful, uneventful day.

Tomorrow we try again, this time there won't be any specialist from the Access Center.  I may very well be screwed.  :(

Fail Day Again...

First of all, this is what my disease, PKD, does to your kidneys:

PKD Kidney compared to a normal, healthy, adult kidney.  PKD kidneys can weigh up to 30 or 40 pounds EACH.  

This gives you an idea of just how large we're talking about...  This next photo is even more graphic, but notice the size of the surgeon's hands compared to the PKD kidneys.  Also, keep in mind that a healthy kidney is roughly the size of your closed fist.

Needless to say, if you have PKD, you have issues aside from the kidney failure.  First and foremost is the perception by those who are ignorant of your situation, that you are intentionally obese.  Some people will make hurtful comments regarding your apparent weight out of a sense of trying to help.  Their hearts are in the right place, but they just don't understand that eating less and exercising more is not going to have an effect on your body when your kidneys are so large that you can hardly move most days.  Other people however, will use the way your condition makes you look to attack you in cruel and vicious ways.  The way to handle those people is to ignore them.  They have absolutely no idea what they are talking about or what you are going through.  If they had to deal with the things you deal with on a daily basis, you know they would simply curl into a ball and waste away because they are not only poorly educated, but they are the definition of weak-willed.   

Love yourself for who you are.  Don't ever let other people dictate to you how you should feel.  In the words of my beloved RuPaul, if you don't love yourself, how the HELL are you gonna love somebody else? I'm blessed to have so many people in my life who love me and I love them right back.  

Now then, moving on...

Yesterday I went in for another round of dialysis.  My days are supposed to be Tuesday, Thursday, and Saturday.  Thus far, I haven't been able to adhere to that schedule at all.  Yesterday was no exception.  

I arrived at the clinic at my appointed time and the nurse that was successful on Friday was my nurse again.  I had applied the EMLA cream and when I weighed in, I had only gained about 4 pounds since Friday.  That's about average between a Tues/Thurs session, so only having gained that much since the previous Friday is actually quite good.  We decided I would stay onboard for about 4 hours and they would try to pull about 5 pounds off.  Dan had taken the day off from work because we had initially had a very busy day planned between an MRI for our Daughter and several other Doctor appointments for me and whatnot.  As it turned out, the MRI had to be rescheduled due to Medicaid not having approved it yet and my Doctor appointments were cancelled so that I could dialyze.  

Dan helped me get settled into my chair, covered me in my blankie and made sure I had the Kindle and my water bottle and so forth and then headed out to the waiting room.  He planned on heading back home as soon as the needles were in and the machine was on, but he didn't want to leave before then just in case...  as it turned out... that was a very good decision.

The first arterial needle went in and immediately pulled very dark blood.  Dark blood = clotting.  Dark blood is not good.  I had literally clotted off almost as soon as the needle went in.  Shit.

She pulled that needle, listened to the fistula and felt it, determined that the fistula itself was not clotted off, I just have this weird ability to keep my blood in my body.  :-/  

Second arterial needle went in, and this time she couldn't find the fistula.  That needle also got pulled.

Third arterial needle went in and this time I clotted it off immediately again.  Thank goodness for EMLA...

I asked her if there was any way to integrate Heparin into the process.  Heparin is an anticoagulant and in my vast expanse of knowledge, I figured that might help me stop clotting off the needle right off the bat.  She explained that they weren't supposed to do that any more, but back in the day, that is how they did things.  

Another nurse came over to try her luck and my original nurse came back with a Heparin laced needle after all.  Fourth needle went in, found the fistula and did not clot.  FINALLY!  We all took a breather and then it was time to start the venous needle.  

The venous part of my fistula is even deeper in my arm than the arterial, so I held my breath and hoped...  Needless to say, fifth needle was a fail.  Not only that, but this time the nurse managed to infiltrate the fistula. Basically, the needle went in on one spot but then also punctured another spot in the fistula.  This causes blood to leak out of the vein and start to pool under the skin.  This caused the area around the fistula to start to swell immediately making it even more difficult to stick.  That needle was pulled.

We took a break before we tried needle number six.  

Needle six was also a fail.  The nurse didn't even hit the fistula this time.  

That was it for me.  I was a wreck, the nurses were wrecks, it was time to give up for the day.  There was momentary talk of sending me to the hospital to try and dialyze there, and if they did so, they were considering leaving the arterial needle in because that way the hospital could just use it and not have to re-stick that one.

In the end, it was determined that I would just come back on Thursday to try again.  This time they are having someone from the Access Center to come and stick me.  Those people are the ones that build fistulas and they know all there is to know about them and how to stick them.  The person from the Access Center will evaluate my situation and decide whether or not my fistula needs to be rebuilt or not.

After all of that, this is what my arm looks like currently:

Actually, 5 and 6 need to be switched...  The spot marked with a 6 is actually the 5th place they stuck me... the one that infiltrated.  The spot marked with a 5 is where they had to attempt to move to after the infiltration.

Today my arm is very tender and very painful.  I can't even stand to wear my lightweight cotton robe because it has long sleeves and I can't stand the pressure that the lightweight cotton is putting on my arm.  The whole thing sucks, but I keep telling myself it will get better...  It has to.

I need to go grab an ice pack and a couple of Tylenol now, so I'll close this.  I'm going to stay positive and believe that tomorrow will go much better and the person from the Access Center will be able to teach the clinic nurses some sort of magic trick to be able to stick my fistula successfully the first time.

4th time... or not...

I was finally set up to start my treatments at my local clinic!  Yay!!!  My schedule will eventually be Tues, Thurs, and Sat at 11:30 am.  I arrived on Tuesday at 10:30 because there was a mountain of paperwork to fill out and after all that, I was shown to my chair.

At this point, my arm looked like this:

Obviously some bruising and so forth from the difficult time they had on the previous Friday and Saturday at the hospital.  

My whole arm throbbed and was even a bit swollen.  That made an already difficult job that much harder.  The nurses at the clinic tried for 90 minutes to get the needles in my arm and in the end, after sticking me more than 5 times, they gave up and told me I had to go see a vascular surgeon because obviously there was something wrong with my fistula.

More tears, more pain, more fear...  more trauma.  

Now I was terrified on a whole new level.  What if my fistula really was bad?  How could I get my treatments, which I need in order to survive at this point, if they can't use it?  

The clinic set me up to go to the hospital that day to get a Fistulagram.  Basically, that is a test, done in an operating room, where the Vascular Surgeon goes into the fistula and injects dye into it to check the flow and make sure there are no clots.  I was given a light anesthetic which made me sleepy, but didn't stop me from feeling everything that was going on...  

I currently have TennCare Medicaid.  My Medicare will kick in after I've been on Dialysis for 3 months.  For now, and until Dan gets hired away from the Temp Agency and we can get Employer provided Health Insurance, I'm at the mercy of State Sponsored Medicaid.  While I am more grateful than I can properly express that I have that option, there are serious overhauls that need to be made to the system.  

The Clinic sent me to one of the several hospitals in our area.  I registered and then was left to sit for over 2.5 hours while other patients came and went.  I was told that Medicaid had not yet approved my procedure at that particular hospital because THAT hospital didn't accept my particular type of Medicaid.  Therefore I had to have pre-authorization for it and Medicaid was slow to get to that.  I called Medicaid myself to find out what was going on and was told that they actually have up to 72 hours to make a decision on my treatment.  I explained that this was a life-saving procedure since I need dialysis to survive now and I can't dialyze until the procedure is done.  

Medicaid then told me that I needed to go to the ER because if you go to the ER, they cover it no matter where you go.  Wait... what?  UGH!  So off we went to the ER at that same hospital.  Once I checked in there, I called back to the clinic and told them what was going on.  They got on the phone with the Doctor who would be doing my procedure and the Doctor's office called me back to tell me to go home and instead, go back in the next day to this other hospital that DOES take my particular form of Medicaid.  Great.  Because you know, I NEED more stress...

Thankfully, everything was properly arranged for the next day and I headed in for my test.

Yeah, it felt just as pleasant as you think it did.  I don't remember much other than pain and crying out in pain.  Oh, and I remember the Surgeon clearly saying that my fistula was one of the most well done that he's ever seen.  The flow is excellent and there are no clots or anything else.  The only 'problem' is that the fistula itself is set a little deeper in the arm than the nurses are probably used to.  The Surgeon was actually kind of pissed off that he had to deal with this at all.  He said that he was getting tired of nurses deciding that just because they can't get the needles in on the first few tries that there must be something wrong with the fistula and therefore he needs to fix it.   

So now I know that there is nothing wrong with my fistula other than it is deeper in the arm than the nurses are accustomed to.  The day after the test (Friday) I went back to the clinic for dialysis.  This time I had a different nurse who took her time and managed to make both needles work on the first try each.  It was wonderful!  

Oh, before I forget, I also want to give a huge hug and many thanks to all the Nurses in my life.  I don't mean just the nurses at the hospitals and clinics...  I mean all the nurses on my Facebook list and in my life in general.  One of these wonderful Gals suggested to me that I ask for EMLA creme.  This magical concoction helped a LOT.  Thankfully my Medicaid did cover that because Medicare makes you jump through a million hoops before they will approve it and when they do approve it, only the clinic can get it.  In my case I was able to go right to Walgreen's and pick up a prescription for it.  

After applying the cream, you have to wrap the area in clear wrap.  Not really sure why, but if it works, pass me the SaranWrap!  lol  

This was a very good day for me.  Here's a little video and some other photos of a very successful dialysis day.

OH!  Almost forgot.  The entire time I was plugged into the machine, we were under severe thunderstorm warnings and tornado warnings.  In fact, we also experienced golfball sized hail while I was sitting there helpless in my chair.  So yeah, while the dialysis itself was a piece of cake that day, there were still huge emotional stresses going on.  These were the storms that killed over 30 people in Alabama, Tennessee, Kentucky, and Indiana.  Yeah... those storms.  

This is what the 'kidney' on the machine looks like after they put all the blood back into your body.  No real reason to post this other than I think it looks neat with the streaks in it.  =P

Ok, the next treatment attempt requires it's very own entry, so I'll close this one for now.  

This is hard...

I meant to get back to this much sooner than now, but it has been a rough couple of weeks.  Sorry about that.

My second time going to dialysis was fairly horrible.  Again I had to go to the hospital for my treatment as they had still not set me up at my local clinic.  Having already done this once, and knowing that the nurses had some problems sticking my fistula because it was new I had a feeling things wouldn't be exactly simple.  I had no idea just how bad it would get though...

On my second day, all my nurses were different than the first time, so none of them were familiar with my arm.  My first nurse tried sticking me and, while the arterial needle went in fairly easily (remember that arterial blood is the dirty blood that is flowing away from your heart, and it is also in the larger of the 2 blood 'highways'), by the time he had tried the venous line, I had clotted off the arterial line.

Oh yeah, that's another problem that I have.  My blood clots almost immediately.  While that is a good thing in just about every way possible, it is a really bad thing for dialysis.  Well, ok, more accurately, it is a bad thing for going onboard with dialysis.  Coming off the machine it is awesome.  I'll get to that in a bit...

Anyway, so both needles had to be removed and another nurse called in to try to get the needles in.  All of this is painful by the way.  I'm not going to lie to you or sugar coat it.  These are 16 gauge needles, and while they are small in terms of dialysis, they are NOT small in terms of reality.  lol  I did a lot of reading and research over the years regarding my disease and everything that goes with it.  Therefore, when the time came, I knew enough to ask them to numb the injection sites first.  NOTE: They will generally NOT offer to do this for you.  YOU NEED TO ASK FOR THE NUMBING MEDICINE.  As time goes on and your fistula becomes more mature, it gets easier (so they tell me), but starting out, don't be afraid to be a complete wimp!  Ask for numbing medicine each and every time they stick you.

It took over an hour to get the needles in this time.  In the end I was sobbing uncontrollably, my arm was starting to swell, I had 3 or 4 nurses all focused on just me and my stupid arm, and everyone felt horrible.  Finally they got me onboard though and my treatment began.  Everything went fairly well after the initial trauma and my nurse Joe was a great guy who really took time to explain things to me and share his own stories.  Joe, as it turns out, is a Vietnam Vet, Author, and has a PhD in BioChemistry.  He actually built one of the labs there at the hospital, and has developed some sort of life saving piece of equipment for our troops in the field.  Then the money ran out.  The hospital decided to drop Joe's funding for his lab and they downsized his position entirely so he took a job as a dialysis nurse.  Joe is also a 7 year survivor of colon cancer.  Oh, and he is a musician who actually had a song in the top 25 decades ago.  :)  Needless to say, he really helped the time go by quickly.

When I had less than 30 minutes to go in my treatment however, the alarms on my machine started going a little nuts.  Now, alarms are very common while you're onboard.  There are alarms for everything.  An alarm sounds before the blood pressure cuff takes your pressure, alarms for when the various chemicals need to be changed, alarms if your blood flow is too slow or too fast, etc etc etc...  It can be a very noisy, beeping, chaotic place in the dialysis unit.  In my case, my alarm kept going off because, as Joe discovered, I had clotted off the machine.  Remember, I clot really easily...  They give you Heparin in your line until about the last hour of dialysis.  The Heparin helps to keep you from clotting off, but they stop it an hour or so before taking you off so that once they pull the needles you will clot off.  I my case, 30 minutes after they stopped the Heparin drip, my blood said, "ENOUGH!"

On the one hand it was awesome because I got to come off the machine a good 20 minutes sooner than I was supposed to, but on the other hand, it was a bad thing because I came off the machine 20 minutes sooner than I was supposed to...  I need to stay onboard to get my blood clean, but I hate being onboard.  lol  Catch 22.

Joe pulled the needles and I literally didn't even have a single drop of blood on the bandage.  THAT is not commonplace.  You should expect to bleed.  You should expect to have to hold pressure on your arm for a good 5 to 10 minutes after the needles are removed.  In most every other person out there, bleeding can be a real problem.  Remember that these needles are going directly into your artery and a huge vein.  In fact, for most people, they expect that if you don't immediately apply pressure, you will spurt blood across the room in time with the beating of your heart...  makes sense if you think about it.  (Also kind of gross if you think too long about it.)

This 2nd time had been on a Friday (A week ago yesterday actually), and I had to come back the following morning to run again.  At this point we were still trying to find my dry weight and get rid of the over 25 pounds of extra fluid that had built up in my body, so running me 2 days in a row is no big deal.

I came back in the next morning and Joe was on duty again!  Yay for small blessings!  Joe told me immediately that he wasn't even going to try to stick me that day.  Instead, he actually called another nurse who was working in ICU to come down specifically to stick my arm.  This guy took a long time to really examine my arm and listen and feel around before sticking me.  He got the needles in on the first try and the rest of that session was fairly uneventful.  That is until....

CRAMPING!!!

Holy crap!  I had read that when they get to your dry weight, (the weight you are without any excess fluid at all in your system) that you would experience cramping, nausea, and other assorted horrors.  They tell you that, but nothing, and I mean nothing, actually prepares you for it.

When I got to about 30 minutes left in my 3rd treatment, my left foot started to cramp up.  I'm not stranger to foot cramps, but generally I get them when my feet are cold.  This time my feet were toasty warm, but the feeling was unmistakable.  I tried stretching and moving, the things I normally do when I get my foot cramps, but nothing worked.  I started to say something to Joe, and then, without any sort of warning at all, my entire left leg seized up.  It was excruciating!  Think about the worse charlie horse you've ever had... ok, now multiply that my 10 or more.  Before I could recover enough to start to form words, my right foot, quickly followed by my right leg also began cramping.

I was literally lying there in the bed writhing in pain and even though I tried to be brave, the pain won out and I became that person that you never want to be... the one moaning in pain and begging for them to do something to make it stop.

Joe came over and with the push of a few buttons, stopped pulling fluid and started putting some saline back in.  The cramping subsided within 3 minutes of him doing that.  He also said, "Looks like we found your dry weight".  lol  Thanks Joe.  I needed you to tell me that.  =P

I came off the machine and went home, none the worse for wear.

My next experience was different...  and it requires it's own entry.