Pee Pans and Frankenports

Plasmapheresis (PEX) day three has finished, and oh my what an experience it was. Here’s a rundown of the past few days:

Day One:

I’m a little anxious. I have to have a temporary catheter put into my neck by an invasive radiologist (IR), so..surgery. I don't care what anyone tells you, when they shove a tube down your jugular, it hurts. The IR was apprehensive to do the surgery because I'm on blood thinners, so he was even more cautious than he would have otherwise been, I hope. There were no pain medicines given during the surgery, only a local anesthetic which wore off before he was finished. He would say "You're going to feel some pressure" but I'm pretty sure he's never had a catheter shoved in his neck, because that was definitely more than pressure. Moving the wire thing in and out, and the stitches, I felt those too. But the Frankenport was needed in order to start the PEX, which is needed in order to feel..."Alive" (said in my best Frankenstein's creator's voice)!

Ah yes, my lovely Frankenport. For those who have no clue what I mean, think of Frankenstein. Remember the bolts in his neck? Well, I have more of a water hose effect going on. One big hose, shoved through a large vein (my jugular) down to my heart, where it exits the skin in my neck it separates into two hoses one capped with blue and one with red, and that, my dears, is my Frankenport! Kind of gross, I haven't looked at it when the nurses remove the dressings, I figure I don't need to see anything other than the water hoses spouting from my neck!

After the Frankenport has been inserted, the IR nurses wheeled me off to the unit to get the PEX. What is PEX? Well, isn't this just one big medical science class today! PEX is the way lazy people, like me, write plasmapheresis or plasma exchange. And that, pretty much says it all. Plasma exchange. My plasma, and all of those antibodies attacking me, is filtered from my blood and in its' place I receive my plasma free blood, albumin (a protein found in your blood) and fresh frozen plasma (FFP), which is an oxymoron. Anyway, FFP looks a lot like orange juice and the plasma they remove from me looks like apple juice. Anyone thirsty yet? This process takes about two and a half hours, plus prep time. So less time, in all, than the IVIg, that's plus! Another plus? It seems to be working so far!

I reacted to the FFP. I started getting numb and tingling around my mouth, began to get nauseous, head started hurting, eyes went crazier than normal, things started getting dark, my skin was cool and clammy and my blood pressure dropped. I started to pass out. It was amazing seeing how quickly dropping the head of the bed can raise one's blood pressure! I was given more benedryl, some anti-nausea meds, calcium, and more saline and felt better soon after. PEX had finished, the nurse taped down my Frankenport hoses to make them more secure and I was sent on my way, with instructions to keep it dry and not let even one drop of water around it. One day off and I'll be back.

Day Two:

I'm not nervous today, because there is no surgery beforehand and I know what to expect now, I think. My bandages are removed along with skin, I don't think the makers of those nifty clear plastic band aid things realize that people need their skin. The adhesive has to be industrial strength epoxy or super glue, I think. Next, as if the burning from the removal of the first few layers of skin wasn't enough, here comes the alcohol wipes! Oh well, better to set one's skin aflame than to have an infection set in. The nurse hooks the hoses up and PEX begins. I’m almost finished and those feelings I had during the first exchange set in. I almost pass out again, blood pressure drops to 80's over 40's, but again that neat ‘head of the bed drop’ does the trick, I get more benedryl, and then a little more and PEX day two is over. Well, not exactly. She tapes the hoses down and I leave the unit, go to the waiting area to get Super Hubby and our kidlets and I'm itchy. Great, now I have hives. Really? I'm still ready to blow this popsicle stand, but the voice of reason...otherwise known as Super Hubby, makes me go back to the unit and let them know! Darn him and his sensibilities! The nurse called the doctor, who said to give me more benedryl and THEN I get to go home. I think they could've just given me horse tranquilizers and called it a day!

Yesterday I was feeling a little stronger. My hip and knee are stronger, my breathing is doing better, and I actually cooked a real dinner for my poor, starving family AND I did the dishes AND wrapped the presents (for our gift swap once we finally get to go to Super Hubby's Awesome Family's)! I'm quite impressed, this is a lot for me and I'm proud of myself.

Day Three:

Nervous? Nope. I know what to expect - some sort of allergic reaction, tons of benedryl and the shedding of more layers of skin. Right? Wrong! Today was humiliating, I was mortified. Remember how your mom, as a child, would tell you "Now, Jane go pee on the potty before we go, you don't want to go while we're there!" Well, today I peed before we left the house, like the good little girl I am. Then on the way I decided I needed to visit someone else's facilities. Ah, that should be good. We get to the hospital, I go to the unit and they let me in, point me to the bed I'll be lying in for the next several hours and begin the PEX set up. And we're off to a good start. I inform my nurse today "Just so you know, I tend to have some sort of reaction and my blood pressure drops and I tend to get nauseous once the FFP begins, so I'm not sure if you want to give me the anti-nausea stuff before we start the FFP or wait until I need it." Proactive! I we're about ten minutes into the treatment and it hits! You're kidding me, I've drank just enough to swallow my morning medicine cocktail and that's it, and I have to pee again!

Okay, I normally have a bladder of steel and I'm figuring I can hold this, no big deal. Not today, I guess...

Me: So, um what happens if I have to go to the bathroom? I know we can't stop this once it's running.

Nurse: We'll get you a bedpan.

Me: A bedpan? I, uh, I've never used one of those before. Hopefully I can hold it.

Nurse: Oh, it's okay we'll show you how to use it.

Me: I'll try to hold it....

Time elapsed, maybe three minutes...

Me: I...I don't think I can wait the two hours before I have to pee.

Nurse: Okay I'll grab you a bedpan.

Me: *Face bright red* Okay.

So, the nurse comes back with this little plastic pee pan for me to use. She draws the curtain as much as possible, which means that I get one side and the end of the bed closed off. The rest of the area is free for everyone to watch me struggle with my predicament.

Nurse: Okay pull your pants down and raise your bottom.

Me: Now? (Shouldn't they like, stand guard and make sure no one else is going to watch me pee the bed here? Like an army of nurses walling off my privacy...right, we're in a hospital, there is no privacy!) Are you sure I'm not going to break that? I mean, will that hold a fat person like me?

Nurse: *laughs* It will hold you, you won't break it.

I think she thought I was kidding, but I'm serious man! But I'm also getting ready to pee this bed, so I drop my drawers, raise my butt and let the friendly nurse shove that pee pan right under me. Now what? I've never peed laying down, well not since I was a baby in diapers, and never on a medical mauve colored pee pan! But she told me to pee so I start...OMG I shouldn't be feeling this here...right? I squeeze off the peeing and wait for her to come back, trying to pull my shirt to hide my lady bits, and ask, with urgency...

Me: I don't think I'm doing this right, I shouldn't be feeling this should I?

Yep, that pee went right on the bed. I reposition the pee pan to where I think it should be and finish up, and yes, my face is even more red. I'm humiliated, I've peed in front of some lady hacking up a lung colored with an unhealthy yellow complexion, some man who has come from his room upstairs, a couple of nurses and a nurse's aid. Not only did I pee in front of them all, I peed the bed too!!

Nurse: Oh it's okay.

What, pray tell me, is okay about this situation? That she's now telling me to roll over onto my side while my pants are still around my knees....we don't know each other like that, man! I am not comfortable. Can I at least get some baby wipes and clean up a bit? Take me to dinner or something...

I clean myself up, she changes the peed on bedding and I'm mortified! Time passes, I start tingling so she gives me some stuff to counteract it. My BP started to drop, but I knew what to watch out for today, so when the eyes went wonky she lowed the head of the bed and I was better. We're in the home stretch - the finish line is there, in the distance and I have to pee, again! There's no way I'm peeing the bed twice in one day! So I asked how much longer we had, about twenty minutes. I squeezed my legs together, prayed to the whoever the saint of bladder control is and God himself that I can wait until we're finished. It worked! I was nearly crying tears of urine but I held it until the PEX was over, then I darted over to the bathroom.

Okay, I lied. I can't dart anywhere, but I walked as fast as my gimpy self would let me, and relieved myself, thanked God, the saint of bladder control and the makers of indoor plumbing! Oy, I pray Monday goes better. I'd rather have the allergic reactions than a repeat of my pee pan mishap!