So, again it's been too long...

Lots of things have changed since last we saw each other.

My Dialysis is rarely a problem any more.  I now have buttonholes in my fistula.  Here's a Power Point on the Buttonhole Technique.

There are still some days when my Nurses have problems getting the needles in, but WAY more often than not, things go off without a hitch.  So yay!  :)

Also, I have finally gotten rid of those giant PKD Kidneys.

I had a Bilateral, Radical Nephrectomy on April 2, 2013.  The surgery itself was fine.  Recovery has been hell.

Here's a video describing what my hospital time was like:

Surgery Update

Yesterday, April 15, 2013, I had my staples taken out and had Steri-Strips put on.  This was evidently not a great idea.  Last night I ended up in the Emergency Room because my incision had started to bleed.  The strips weren't holding and, in fact, were falling off.  I noticed the blood when I was on the toilet.  As I stood up, there was blood drops on the toilet and then, as I stood there, I realized blood was collecting on the floor.  Not good.

We tried holding pressure on the incision for about 30 minutes, but the bleeding continued, so off we went to the ER.

As it turns out, the blood is apparently old blood from the surgery that had collected under the incision site and finally found an opening in order to drain.  Now if only it would stop draining...  ugh.

That's not the only issue however.  I've known for a long time that I am allergic to many types of adhesives.  I blister from plastic medical tape and even band aids cause me some problems.  Little did I know however...

I have blistered under the Steri-strips and that's one of the main reasons they aren't sticking.  The blisters are itchy and annoying along with being a danger if they burst because they are so close to the incision which is now open in places and draining.

Such is my life.

I currently have, of all things, a maxi-pad across my belly to absorb the draining blood and am just sort of maintaining the status quo.

Here's the most recent photos...

That's me, pre-surgery.  Pregnant with my PKD Twins...  

My incision taken while still in the hospital.  This was taken approximately 4 days post-op.

These next photos are of the blisters that have formed under the Steri-Strips.  Trying to take the photos while not making this an X-rated blog was interesting...  lol

And finally...

I present to you, THE TWINS!!!

Surgery was actually, apparently, only 45 minutes.  Rather amazing considering the size of those damn things and the fact that they seem to be fused together.  

Let's recall for a moment... Healthy kidneys are approximately the size of an average computer mouse (or your closed fist), and are smooth and shiny and, most of all, bean shaped.

My kidneys were both in excess of 30 cm.  That's about 12 inches, or, as long as an NFL football.

I don't know what they weighed, nor how big around they were, but you get the idea.

So, the twins are gone, eventually I'll be healed up and able to start exercising, and after my Daughter starts college this Fall, I'll begin the classes I need to take in order to get on the Transplant list.

Things are looking up, even though it's a real struggle right now.  I just want to be healthy again.  I want to be able to hike again.  I live in one of the most beautiful areas in the United States and I've yet to be able to actually enjoy any of it because of this damn disease.  Thankfully I now have a light at the end of the tunnel and I am starting to really be able to visualize the day when I'll be 'normal' again.

That's it for now folks.  Thanks for reading.  :)

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