Week one with "Big D"

I've known since 1994 that I had PKD.  I have known the inevitable outcome of my disease since then as well. I've known that I would eventually have to begin Dialysis, but it was always something that was 'eventual' and never a 'right now' thing...

Starting Valentine's week, I began to realize that I was feeling worse than 'normal'.  I was feeling full all of the time.  I had no appetite at all, even after not eating anything for more than 12 hours.  I didn't understand what that meant, but I knew that every time I had seen my Nephrologist, each of them had always asked about that particular symptom.  "Have you noticed a loss of appetite?"  That's how they phrase it, but that does not adequately describe how it feels.  I didn't feel like I had lost my appetite, I just felt like I was full all the time.  When I would force myself to eat, there was always room for the food, it just never felt like there would be.

It's a very difficult thing to describe.

At any rate, I also noticed that as the week progressed, it was becoming more and more difficult for me to catch my breath.  I was so uncomfortable all of the time...  it was so much worse than my usual level of pain and discomfort that I knew something was going on, but because I'm me, I just kept waiting for whatever it was to pass.  I didn't know what was going on, but when I looked up my symptoms on the computer, the result was always the same, 'end stage renal failure'.  I translated that to mean, "this is just how you're going to feel from now on because your kidneys are failing".

Saturday the 18th was the worst day yet.  I laid down to go to sleep at about 9:30 or so that evening and after about 20 minutes of gasping for air I started to get really scared so my Husband took me to the Emergency Room.

Some tests and a chest X-ray confirmed that I had a lot of fluid collected on my lungs and my heart.  They gave me a Lasix IV push and ordered me to see my Nephrologist on Monday.  Monday came, the Nephrologist confirmed that it was past time for my to start Dialysis.  I was set up to begin my treatments at the local Hospital because it would take some time to set me up at my local clinic.

Various views of the Dialysis Machine.

I had my fistula put in back in August of last year, so it is about 6 months old.  That's just about the minimum age that your fistula should be before you start dialysis.  As it turns out, my fistula has other issues aside from being new.  Apparently it also has a bend in it and the 'thrill' (The sound and feel of the vibration) can be felt throughout the entire arm rather than just in the area of the fistula itself.  My first nurse stuck me with the first needle nice and clean.  The problems began when he tried to stick the second needle.  Because of the bend in the fistula, he couldn't hit the correct spot.  By the time he realized what was going on, I had clotted off the first needle.

OH, and before I continue, for those of you reading this that are new to Dialysis, ask your nurse to numb your arm before sticking you.  They can inject you with medicine to numb the area so that when they stick you with the huge needles, you don't feel it.

My nurse called over the Nurse Manager that was on duty that day so that he could give it a shot.  It took this guy several minutes of listening and poking and feeling around to find good injection spots, but after that he was able to stick me fairly quickly.

Here's what it looks like after they stick you but before they open the tubes and start running your blood.  From this step, the machine gets turned on and your blood begins to filter through.  The nurse will determine how fast to run you.  In my case, for my first time, they ran me very slowly.  I was 'onboard' for about 3.5 hours.  

Before you start dialysis, the nurse will weigh you and take your vitals before hooking you up.  That weight is your 'wet weight' or, what you weigh when you are retaining extra fluids.  Afterwards they will weigh you again to get your 'dry weight', or what you weigh after they pull off the extra fluid.

In my case, on my first time, they pulled approximately 7 pounds of fluid off of me.  I was able to breathe easier, but other than that, I didn't notice a big difference in how I felt.

Here's my 'kidney'.  This is the part of the machine that does the filtering that my kidneys used to do.  

For the time I was 'onboard', I was unable to move my arm at all for fear of moving the needles and puncturing the fistula.  To keep myself occupied, I had the Kindle with me and spent most of my time reading "Dialysis without Fear: A Guide to Living Well on Dialysis for Patients and Their... (Kindle Edition)".  I also had my trusty iPhone, but I neglected to bring my charger so by the time my treatment was over, I was down to about 20% battery.  :-/  

Oh, and since I'm thinking about it, what to bring to dialysis is something I should talk about.  You're going to be plugged into a machine for a minimum of 3 hours.  You are going to be a little cold because your blood is going to be circulating outside of your body.  Wear comfortable clothing and socks.  Bring a blanket and pillow.  Bring something to read or do that you can handle with one hand/arm.  In my case, the Kindle is the perfect solution.  Generally wherever you have your treatments will also have televisions.  Some clinics only have a shared tv for every so many chairs and other clinics have a tv per station.  In my case, at the hospital on the first day I didn't think to ask for tv, the second time I went, that tv was broken and the third time, I finally had a working tv which I turned on and then fell asleep in front of.  lol

Yay for TV!  :)

Make sure your phone is fully charged or bring a charger with you in case you spend the bulk of your time playing games on your phone.

Being prepared will make your treatment go much easier and make it seem a lot faster.  

After 3 hours or so, it's time to come off the machine.  The nurse will rinse whatever blood is in the tubes back into your body and then you'll be untaped and the needles will be removed, one at a time.  After the needles come out, the nurse will hold pressure on your arm for at least 5 minutes.  Because the needles are going into arterial as well as venous, if you don't clot off right away, you can get blood spurting across the room.  If your nurse has other patients coming off machines at the same time as you, he or she will apply a plastic clamp to your arm in order to maintain the pressure.

Obviously, because there are two needle sticks, you'll have two clamps.  They can be frightening looking at first, but being prepared will make it better on you.  

In my case, I apparently clot very easily.  I have had no bleeding issues at all.  After pulling the needles, we wait about 5 minutes and then take a peek to see what's happening.  So far I haven't even bled as much as a drop or two after pulling needles.

As they unhook you, they will probably ask you to hold your tubes so that their weight doesn't pull on your arm.  It's kind of neat because the tubes are warm...  lol  Roughly 98.6 degrees.  ;)

Once you're all taped up, you'll be weighed again and then you're free to go.  In my case, after my first treatment, I thought it would be a great idea to go to the grocery store and walk around.  In hindsight, that was a poor decision.  While I didn't feel ill immediately after treatment, by the time we got to the grocery store and started walking around I started feeling a little sick to my stomach.  We called it a night and just went home so I could rest.

My 2nd go with dialysis will require it's very own entry which I will work on either later tonight or tomorrow.  

For now I'm going to close this.  Here are a couple of videos so you can hear what it sounds like while you're being treated.

Introductions all around

My name is Julie.  I'm 46 years old and I have Polycystic Kidney Disease.

I was officially diagnosed with PKD in April of 1994 when I was hospitalized for complications with my pregnancy.

I don't know very much about my Family History, most of my blood relations are either dead or people that I haven't spoken to since the early to mid 80's.

Here's what I do know about PKD in my genes:

My Father was the baby of 10 children.  Aside from himself, only two of his sisters lived past the age of 40 or so.  Of the three of them that lived past 40, Dad and Ethel had active PKD.  Nora, to my knowledge, did not have the cysts.

Nora also had no children.

Dad and Mom had 3 of us.  My brother Mike who is 20 years older than me and my brother Allan who is 14 years older than me.  Ethel had 2 Children, Jane and Judy.

I have one child, Carolynn, who is 17.  Mike has 2 children, Michelle and Mike Jr who are 31 and 28 respectively.  Allan has one child, Allison who is in her late 20's.  Jane has 2 children, Jackie and David who are... I have no clue how old.  Judy had no children.

Mike and I both have active PKD.  Allan never formed the cysts and his daughter Allison is also apparently cyst-free.  Both of Mike's children have active cysts and, last week, we learned that Carolynn already has cysts showing on her kidneys as well.

I've been told that Jane has active PKD and that her son David also has it.  To my knowledge, Judy does not have it nor does Jane's daughter Jackie.

My brother Mike is on his second kidney and doing very well considering he is 66 years old.  To my knowledge, aside from myself, Mike is the only other person to take an active role in battling his PKD.

PKD supposedly has a 50% chance of being passed from parent to child.  Again, since I can't go back and look at all 10 of the births in my Father's Family, I have no idea what the percentage really was.  All I can do is look at those of us that I know about, and it sure seems like 50% is a bit false.  Three kids in my family, 2 of us have it.  Of our kids, 3 out of the 4 have it.  Carolynn, at age 17, has already said that she doesn't think she ever wants to have any natural children.  She is already starting to think in terms of being a Foster Parent and adopting a child of her own rather than continuing to pass on this damn faulty gene.  I'm fine with that idea.  I know what I'm going through and now I know what it means to be a Parent and be told that your Child was 'lucky' enough to develop the damn disease as well.

This is enough for now.  I had my first go with dialysis today and I'm still trying to sort through my feelings and thoughts about all of this.

My goal for this blog is to collect my own thoughts, experiences and shared advice with others who find themselves on this same journey.

I will post again soon.