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©

Back among the Living

I am finally back among the living. This last bronch infection really beat the shit out of me. Each one seems a bit worse than the last. Coughing up bloody chunks of lung just ain't fun.

And even when I'm sick in bed, life goes on--the good with the bad.

The good: Last week, I became a great uncle for the second time, against my protestations that I'm still too young to be a great uncle. My niece had another beautiful baby girl. Both are healthy.

The bad: When I was at my parents' after Christmas, as always, I went to see my Aunt Alice, Mom's oldest sister, who partially raised my Mom, so she's always been more like a Grandma. Her Alzheimer's is progressing rapidly. It's hard seeing her decline. She knew me, which has been a fear of mine for the past year or so, since I don't get down to see her more than 2 or 3 times a year. She's been in a Seniors assisted living facility. Other residents said of Aunt Alice, "we can tell she WAS a really caring compasionate person." Hearing her referred to in the past tense when she's not dead is strange.

Monday she had to go to a nursing home, after a short hosptial stay last week. This fucking disease is a theif. It has stolen her life. Antithetical to the last sentence of the previous paragraph, She is no longer alive. There's no quality of life. She's a body that is rapidly losing its soul. IF there was a god, 'he' would take her to her glory, as the bible thumpers are wont to say. She worked hard all of her life. This is not how it should end. It should have ended before reaching this point.

My love of cooking, and skills thereof are a legacy of my Mom and Aunt Alice. She could cook for 3 to 300. She ran a restaurant when I was little, and later was the cook at the my grade and high school cafeterias before she finally retired, to care for my uncle, who had Alzheimer's before he finally died, not knowing any of us. Fucking cruel universe.

For those keeping score at home

...Get out your calendars, and magic markers. Start the office pools. I had nearly two full days of health in the new year before getting sick. My first bronch infection of the year arrived on January 3rd. I'm now coughing up chunks of lung. I figure tomorrow and Wednesday are going to be the 'peak' days, when it's at its worst. At this point in history, the anticipation is almost as bad as the actual peak of sickness...almost. My next infusion isn't until next week, so I should be at a decent IgG level--especially since this hit last week. I better be in good health when I go to San Francisco at the end of the month or I'm going to be extremely pissed.

I was not able to get in to my PCP today, so I'll see him tomorrow, proably get a shot in the ass, and put on oral antibiotics.
I'm enough of a regular now, that I have the little playful banter with much of the staff. If "T", the hot little tech comes in with the bottle and syringe, I ask, "Do I need to drop trou?"
He says, "yes."
I reply with, "OK, but you first."
The ice is broken. If only dating were that easy.

Not Hypochondria

Sometimes I wish the illnesses were JUST in my head—that I was somehow imagining it. After 3 days in bed, vacillating between chills and sweats, soaking the sheets, I saw my dr. today. (I called Monday morning, this was the first opening and I didn’t call the nurse to bump me in this time). I have fucking strep throat—AGAIN! Second time this year. This isn’t on the list of approved illnesses for CVID. WTF?! Seriously, WTF!? I’m so pissed with myself that this one didn’t enter my radar as a possibility, and I didn’t figure this one out. Two weeks ago at my last infusion, my throat was scratchy. He did a strep test then. It came back negative. So, instead of being top of mind, my dyslexic brain erased it from the possible options.
This time, my tongue scrape solution barely hit the blotter before showing the + sign. Strep tests are now like pregnancy tests (not that I have any experience with those), Plus you don’t piss on the test strip. Other than that, they’re similar. But, they take a swab from the back of your tongue, mix in a little tube of solution, pour the tube onto the little holder and wait to see if the + sign shows up. Instead of being knocked up, you have strep…and it doesn’t last for nine months.
So, I was right. I’m really sick again. Sometimes being right sucks shit. I prefer my sick when it's combined with twisted.

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.

Disease finally pays off! ©

Disease finally pays off! ©

Last Saturday I was part of a focus group. I was contacted a few weeks ago by the Immune Deficiency Foundation (IDF), telling me that the manufacturer of the blood product (IgG) that I get wanted to have a focus group of people who are using/receiving this product. It would last 2-3 hours, we’d get snacks while there, a box lunch to go afterwards, mileage and $150. Was I interested?! Hell, you had me at ‘snacks’! Don’t let this out though, or everyone’s gonna be clamoring to find out how they can get CVID and collect these great dividends!

The focus group was held at a company who does focus groups as it’s business, out near the airport. There were 8 (I think) of us all together. While we were waiting to be taken to “the” room, and filling out the requisite paperwork, I asked, “So, is anyone else here CVID?” All but one of us were. The other was the mother of a 7 year old with multiple ID (immune deficiency, not Infectious Diseases for my medical readers) and autoimmune disorders. IF that doesn’t give you perspective that you’ve got to be soulless. Only two of us were male. The other man was a retired teacher, who I would say was in his 60s-70s.

The experience was very good for a variety of reasons: well, obviously extra cash at the holidays is never a bad thing! But also, it brings to mind the ‘ole shoe parable’. You know, the tale that starts outs, “I complained because I had no shoes, then I met a man with no feet…” There are times when I get pissy and whiney—I know, it’s hard to imagine! Meeting others who have a similar experience or life circumstance as you, helps give one perspective. I would guess that 5 of the other 7 have it worse off than I do. One young woman has to travel to two states away every month for her infusions. It had to do with insurance, her medical provider, and where she was on the “IgG list”. She spent most of the summer in the hospital because she couldn’t get her infusions and got too sick. How whacked is that?! We’re in a major city in the U.S. with major players in the medical arena. She’s force to go to BFE every month? Who knew there was a pecking order on the IgG list—even that an IgG list exists?

The focus group was about a new program that if we registered, we would be guaranteed our monthly treatments, regardless of change in medical provider or location. Not a monetary assistance program, but access to the blood.

Another aspect that was really good was meeting others with the disorder. I have a lot of HIV friends. There is a great supportive HIV community. I have the ID that doesn’t have a built in community. This has left me feeling isolated and a feeling of being on the outside—which is a recurrent theme in my life, but that’s whole series of posts in and of itself, which I won’t delve into. I’m the square peg in the round hole, once again. I have an immune deficiency, but not the ‘right one’, I get treatment usually reserved for cancer patients, but I don’t have cancer. It’s like those tests we took as kids, where you are shown a series of objects and have to select the one that doesn’t belong with the others. I’ve always been that one that doesn’t match with the rest.

The focus group reminded me of my stint at the Rehab Institute of Chicago Chronic Pain Center. Most of my ‘pain-mate’ co-horts were in worse shape than me. Or maybe not, but their pains were different, and maybe psychologically I needed to see them as worse than mine. In retrospect, I bet they did the same thing. We were a very motley crew that one would never intentionally put together, and if one did, one would not have expected us to get along. There was me—gay boy from the farm now in the city; blue collar factory worker; upper middle class suburban retired homemaker/mother; and a street wise woman, my age (40 at the time) from the “rough side of the tracks”, who was already a grandma of one with another on the way. Less polite circles would have called here “white trailer trash”. We had a shared/common unpleasant experience—chronic pain. When you’re in absolute agony (no hyperbole here), status, class and social standing don’t mean squat. We supported and held each other up.

I remember the week I went off the last of the narcs. I was a wreck—physically, mentally, emotionally. I was in withdrawal (and didn’t know it at the time that that’s what was going on with me—that’s one thing they failed to tell me). I’d had a sleepless 3 nights in a row, not only sleepless, but totally wired and thinking I was losing my sanity (what was left of it). I walked in that morning after the third night knowing I looked like absolute shit—again—no hyperbole. J (the suburban homemaker) looked at me and said, “I’m not going to ask you how you are today, I can tell my looking at you, you’re not doing well today.” Then she stood up and outstretched her arms to give me a hug.

While loved ones can empathize with what you’re going through, only someone who’s either walked or is walking that same road truly knows the hell you are living, and what an effort it is some days to literally drag your ass out of the bed. Sometimes it’s that mis-fitted ‘motley crew that’s needed to, as Jackson Browne sings it in “Your Bright Baby Blues”, from THE PRETENDER album (one of the all time best rock albums)
: Take my hand and lead me
To the hole in your garden wall
And pull me through

©wtf/rle (with the exception of the Jackson Browne excerpt)