CVID STORIES, NEW CHAPTER

The new gig is consuming a great deal of time. It’s really cut into my blog time, reading as well as writing. Here’s a new tale from the CVID chronicles.
Three months ago, I went in for the monthly IgG infusion. Instead of the usual 2 bottles, (a 20 gram, and a 10 gram), the tech comes in with six 5 gram bottles, from a different supplier. It was a name I did not recognize. I was not pleased that it was six 5gram bottles. It did not bode well for a quick infusion. And it was not quick. They dripped incredibly slow. I quiz the tech, nurse, and my doc about the change in IgG. I was not pleased. The issue was economic. They’ve gone to a cheaper supplier. I’ve heard stories about people having all kinds of problems when their IgG brand is switched on them. Gammagard has been good to me. I rarely had infusion reactions of great consequence—just feeling wiped out, a little achey, flu-ish the night of through the next morning. Overall, not bad. The new IgG, comes from some company in Austria. The next month, back to a 10 and 20 gram bottles. The drip is back to a regular speed. Last week, the third month of the new IgG goes similarly. The tech gets the IV needle in on one stab. After infusion, I’m at the Walgreen’s connected with the medical practice. Suddenly, I start feeling flushed, and itchy. One of the things I had to get at Walgreens was a vial for tetnus, which I had to take back to get the shot. I take it back. Before getting the tech, I go to the bathroom and check under my shirt and pants, I’m red blotchy all over, and itching like hell. The med tech takes me back, I tell him, I’m having a bad infusion reaction, he needs to get the doc again. It’s not that he doesn’t believe me, but wants more info to tell the doc. I dropped trou, and said, “Look at this!” I was not referring to my genitalia. He’s the one straight med tech in the place. I’m rapidly getting hives. They shoot me up full of Benadryl (2x) and some steroid. I guess I’ll not pass the next test for Olympic tryouts. This was my first Benadryl experience. When I finally get off the exam table, where I’d been laying for about 45 minutes, I’m wobbly and woosey. It was like I’d drunk a six pack and smoke a few bowls. Though, there was no sense of euphoria in this scenario. All indications are that I had a severe allergic reaction to this new IgG. My doc explains that reactions usually don’t happen until the second or third time—like the whole bee sting thing. Having never had reactions to bee stings, this was new to me. I’ve had hives once in my life before, when I was in Kindergarden, at Christmas due to an allergic reaction to the something in the stuffing of a big stuffed animal I’d gotten. This was as bad as that long ago childhood memory. I was also given a script for prednisolone steroid pack. If I got hives and then get weight gain and odd fat deposits, I’m going to be really pissed. Additionally, they weaken the immune system. Kind of counteracts the whole getting the IgG infusions.
This week I got hit with a sinus infection. I wake up Thursday, feeling miserable. I go in to work, glands in the neck are thick and swollen. Nasal passages don’t feel good. I call to get in. He has no openings. I call the nurse, she will squeeze me in his one spare appointment, at 2:00. He confirms the sinus diagnosis. I ask for, and get a B12 shot, a shot of rocefin (antibiotic), and the tetnus they had to put back in the fridge at after the SAE from last week, as well as a ‘script for a Zpack.
I worked from home today, which allowed me to sleep until 7:30, roll out of bed, shower quickly, and get to work. I had a productive day.—more so than had I gone in to the office. Now, it’s well past going to bed time, so I’ll close this tome for now. wtf/rle©

It Was Bound to Happen

It was bound to happen

The law of averages, my general luck (or absence thereof), it was merely a matter of time. Today was infusion day. Travis, my favorite hottie phlebotomist comes in to set up my IV. The famed Travis who has never had to do a second needle stab on me with my tiny, rolly, shitty veins for blood draws in the nearly 10 years I’ve been going to this medical practice, and two years of infusions (or has it been 3? Time flies when you're getting poked and prodded.). He comes in, straps the rubber band on my upper (right) arm, feels around for a good vein. (He’s the only person I’ve even known who can make searching for a vein for a needle stick into an erotic experience—but I digress.) He finds two possibilities, but is tentative. “We’re going for the one in the crook of the elbow.” He gets in, some blood surfaces in the catheter. But as he pulls the needle from the cath, nothing. He plays with it for a bit, moving and juggling, but the vein’s not cooperating. With resignation, he laments, “I’m going to have to try another vein.”
“Hey, it was bound to happen sometime. Don’t worry Travis, you’re still my favorite!” He goes to the left arm. I hate it in the left arm, as I’m a lefty. Also, when one of the other nurses took a blood draw last week, when I was in with my strep throat, she used the left arm. It still had some residual hematoma from that needle stick. But he liked that vein. So he went in. Success.

When my doc finally got in. The throat looks good. I tell him a bout passing out at home after my steam shower to sweat out the toxins. I’m mildly chastised for doing the steam shower, with instructions to not ever do a steam, with a fever, unless I totally load up on fluids before and after, and make sure someone is with me. (Even though it DID sweat out most of the toxins. I quit drenching the sheets in bed.) I’m sure sprawled out naked on my kitchen floor was not a pretty sight.

Cupid’s bow missed me (as usual). But I got poked by Travis twice for Valentine’s Day. IT could be worse. ©wtf/rle

Saline--It's just like beer

I have often said, "I don't buy beer, I rent it", as it runs right through me. I have come to the conclusion that saline is just the same. Today was my IVIG infusion day. The day each month I just want to be over. Travis came and got me to hook up my IV. I don't have a problem nor get freaked out by needles (good thing!) But I just don't like to watch it go in, so I always look away after he does the alcohol swab. All of a sudden, he's moving to get the tape to tape the catheter in. I didn't even feel it going this time. "Damn, you're good Travis!" I tell him this often. It's beneficial to keep the people who jam needles in your body on your good side. He hooks up the the first bottle of IgG, and they always hook up a bag of saline to drip along with the IgG. I have a small bladder to begin with. By the time the first (bigger 200 ml or 20g) bottle of IgG is done. My bladder is feeling it. The second bottle always seems to drip slower than the first. By the time it's finally done, I usually have to piss like a field horse. I always see the Dr. sometime during the infusion. He was running behind today, so when the second bottle had emptied, he still had not been to the room. So, I disconnected the line where it hooks into the catheter, and went to relieve myself.
My medical question is, why are IV fluids kept at room temperature and not body temperature? Aside from having to piss out a liter of urine, I'm corpse cold by the time the infusion is over. Last month, when the nurse went to get me a blanket, I found out they've gone high tech. No more big fluffy cotton blankets. It's the space age disposable blanket, that's the thickness of a paper table cloth or napkin. It's sort of like a large version of the bibs the dentist put on you. But surprisingly, very effective in the warming factor.
When I first learned I was going to start this lifetime of monthly rides, I decided I wanted to try and make these monthly contstitutionals as zen as possible. I was at my previous employer, out in the burbs, so it meant I would end up taking the whole day off. I did this for a few reasons: 1) It was not really worth the while to drive for over an hour, to work for 4 hours and then come back; 2) I loathed that job and place, so the anticipated monthly day away was as much a mental health break as anything; 3) In the event I had an infusion reaction, I didn't have to worry about work. (I've had reactions a few times.)
I'd schedule the appointments for late morning or early afternoon so I could sleep in. I'd take a book, and read while the drip ran. This can end up being problematic, as I have to get my arm in just the right position for the drip to go. Slight movements can stop it. The positions are never really comfortable, especially if the catheter is in the crook of your arm.
Now, since I work in the city, I can schedule my appointments for the end of the day, leave work early, be home by 7:00 pm. I'm usually pretty wiped. Instead of reading, now I try to just zone out, clear my head, and if the nurse/tech/ and/or doc are delayed in their frequency of checking in on me, I sometimes nod off. While not feeding my brain, I think it's good, because it's a forced rest. It's two hours + every month that I have to stop and just be, not do. I don't even put my MP3 ear buds in. A forced rest is not really such a bad thing. We should all 'schedule' that for ourselves. But it should really be more than 2 hours a month. It shouldn't require an IV and bag of saline to make me stop and just be. But sometimes it does. I just wish it didn't make me have to piss so much.

Dreaded Day of the Month

Tomorrow (Thursday) is my monthly ‘dread day’. It’s my monthly IV IgG infusion. I dread this day every month. It’s not the infusion I dread. It, in and of itself is not bad. It’s mild discomfort at the most (usually). What I hate is getting started. The gods, in their sick and twisted humor, gave me a disorder that requires monthly IVs, while giving me tiny rolly veins. Very few medical professionals have ever been able to get an IV or syringe for a blood draw on the first try. It’s usually twice, the record being 4 the last time I had surgery at a hospital I had not been to before. The medical practice I go to now, has 1 med tech (Travis) who has an almost perfect record with me. There’s one nurse (O), who is pretty good. When I first started the infusions a few years ago, the head nurse (H) who was determined he was going to tap my vein or die trying. It took three tries. The next month, I said, “You get one chance. He blew it. It took about four months, and me finally insisting on Travis. THere have been a few new nurses or techs in the intervening months. ONe time after 2 people, 3 stabs, I finally insisted they find Travis. He said, "Ask for me." I said, "I do! THey won't get you until after they've all tried. Since then, I pretty much get him. A few months back, he came in and, said, "we were all fighting for you in the back. I won." That made me so happy. One, that he considered getting stuck with me as 'winning'. And, to be totally superficial, he's so damned hot. He could multiply stick me, and I wouldn't be pissed like I am with the others. We have a good banter back and forth. He has a sense of humor. One time he was inserting the needle. I never watch the needle go in. I don't freak out by it. I just don't like to see it go in. Once in, I can look down, and help tape it down and secure it. Anyway, He said, "I'm done." I replied, "Wow, I didn't even feel it go in. YOu're good! His retort, "Tell that to ALL the men!" Travis could 'stick' me and I wouldn't protest.
So, here's hoping I get Travis tomorrow. He makes the infusions less sucky.