The story behind bubble girl...and a recap of my first appointment

Yes, the girl in the bubble……you want to know why I’m referring to myself as the girl in the bubble? Sure, I’ll tell you.

I had my first “official” appointment with the specialist that is going to be following me and my disease on Monday past. He is a nephrologist….or, a “kidney doctor”. The reason he is following me is because the kidneys are a place that Mr. Wegener likes to hang out, reeking havoc as he goes. Once he pokes around your kidneys, he does all sorts of nasty stuff which can lead to things like dialysis and even kidney transplants. Luckily for me, my kidneys are functioning quite normally. Which is amazing because I’ve been mean to my kidneys over the years. Anyone who knows me knows that I pee a lot. That’s the bad thing; the bad thing is the fact that I hold it. I hold for hours and hours and hours. Bad habit, I know. So, I have to be nicer to the little guys. Especially since they were just poked and prodded with a big needle.

So, I visit the dialysis unit of one of my local hospitals and immediately am greeted with people who look quite, quite sick. My heart really goes out to these people. It also makes me a little afraid for me. It’s scary. So, I check in with the receptionist who tells me I’m supposed to get blood work done. Yippee, more needles!! Fortunately for me, the blood lab is open for another 5 minutes, thus, I got there just in time. Great. She also asks for my “pee bottle”. I was supposed to do“24 hour urine”, which is basically pee in a big Tupperware looking bottle for 24 hours straight. Well, maybe not straight, but, every time you have to pee. So, I explain to her that my bridal shower was the day before and as lovely an accessory the big orange pee bottle is, it really didn’t go with my outfit. Though, I suppose I could have changed my sandals to match or something. So, she outfits me with ANOTHER pee bottle and tells me to bring it back when I come to see him again on Monday. I go off to get prodded by needles and come back down to the waiting room to “patiently” await my turn to see the doctor. The receptionist informs us at this point that there are 7 people ahead of us, even though it was past the time I was supposed to be in my appointment.

Finally, I get the call. “Miss Insert-Last-Name-Here”, come with me. He gives me a lovely blue “Johnny coat” and asks me to suit up and lie down. Hey! I didn’t sign up for any Johnny coat….I think the outfit I have on is just fine and dandy, thank-you very much. So, with some reassurance from my Mom, I put the stupid thing on (I HATE THOSE THINGS, HATE THEM). Finally, the moment I was anticipating happens. Dr. Kidney-man comes in to see me (let’s call him Dr. K). Well, I tell ya. It was an experience.

Germ free.....

The first thing he asks me about is the pee bottle. I quickly dodge the subject with an “I’ll do it when I come back” kinda statement. Then, he starts talking about Wegener and the drugs, and this is when I become “Girl in the Bubble”. Because my immune system is being suppressed, the good stuff it would normally do for me (like fight infection) goes away. So, if someone has a cold, I can’t be around them. If someone has the chicken pox, I can’t be around them. If someone has the…..well, you get the point. He told me to be careful in crowded areas. If I notice people coughing and stuff, stay clear of them. I also need to avoid large crowds if possible. “Hello Hermit”. Hand in hand with that is the washing (pardon the pun). He told me not to touch my eyes, touch my mouth or pick my nose without washing my hands first. I can’t eat without washing my hands (which is a given anyways) and I cannot forget to wash my hands when leaving the bathroom (another given). I’ve stocked up on purell for those times when I just can’t get to the sink. I also think I need to stock up on some moisturizer because the soap and purell overload is starting to dry my hands out. So, keep hands clean and germ free. CHECK. Stay away from sick people and big crowds. CHECK. Now, on to the food business.

My food restrictions

As I previously mentioned, Wegener likes to hang out in the kidneys, thus they need to be monitored regularly. So, that means NO SALT. What the? I don’t eat a whole lot of salt anyways, but, I do like to taste my food. So, he lists off the things I can’t eat. It included everything from processed meats, to ANYTHING in can, right down to ketchup. I pretty much have to eat all fresh food. If it is fresh, I can eat it. So, lots of chicken, fish, vegetables and fruits. Which is OK, but, unfortunately they won’t have any taste. This leaves me in quite the bind. I don’t even know what to eat anymore! I’ve been eating salad everyday for lunch, but, I don’t even know if I’m allowed to be eating the dressing. I don’t know what amount of sodium is “high” and I don’t know how to read the label properly. Luckily for me, my family doctor is sending me to a dietitian. Hopefully he/she can figure me out. I guess the best thing about the food is the fact that I’ll be much healthier. Which is a good thing, considering……

Another food restriction I have is SUGAR. The reason for this is because prednisone drives up your sugars, leading in to all sorts of nasty things, like diabetes. Diabetes is something I DONT want to have on top of all of this. So, I can have NO SUGAR. NONE. Zilch. Like the salt, I'm not really one for a lot of sugar either, but, I do enjoy me the scattered peice of chocolate eruption cake. One thing I AM allowed to have, and have a lot of it, is water.

More H2O?

Water, water, water. The next thing I know, I’ll be drowning myself. The reason I’m supposed to drink so much water is because of the cyclophosphamide and septra. Cyclo can cause bladder cancer, thus, we don’t want anything to irritate the bladder lining. So, I need to drink litres upon litres of it and flush it all out every hour (even if I don’t have to go). As a side note, I never did understand that whole “go even if you don’t have to go” thing. If I don’t have to go, I’m not going to be able to go. So, what’s the point? I’ll just be sitting there straining and praying, hoping to pee. That’s it, I guess. So, V and I went on a Wal-Mart run and picked me up a HUGE water bottle. So, I need to fill it and drink its contents many, many, many times throughout the day. I drank a lot before I got sick, so, it’s not so bad, but, I have to work on drinking EVEN MORE!! GAH. So, I’m basically going to be peeing and drinking all day, but, I think I’ve expanded on this topic enough. For some, it’s probably waaaaaay too much information.

The rest of the appointment....

Other than the restrictions, my appointment basically didn’t given me much new information. He stressed that it’s a very, very serious illness and it’s not something to be taken lightly. He really wants me to follow all the restrictions he gave me so that I can be extra super nice to my kidneys and immune system. He also threw in the “D” word, which threw ME through a little loop. His statement was “The ultimate thing we’re trying to prevent here is DEATH”. Now, how scary is that? Though, I guess it makes sense. If you have a bad flu, they do what they can to prevent “Death”; however, it’s in much less drastic measures. Or, they don’t want you to die from the measles? I think the thing that made it so frightening for me is the fact that you actually CAN die from Wegener’s. Though, you CAN die from the flu. But, Wegener’s is just more scary and unknown. I must admit, the doctor really knows his stuff. It’s hard to trust a new doctor right away, but, I think *I hope* he knows what he’s talking about. I get to meet with my respirologist and ENT soon too. So, I have a whole team of physicians caring for me….WOO-HOO!!

So, I think I pretty much covered everything that went on in the appointment. SO, that’s why I am the bubble girl. I am the water logged, veggie eating frightened to death girl in the bubble. But, do you know what scares me the most? The fact that I left my big orange pee bottle on the Dr. K’s desk and he’s going to be mad at me on Monday.