First Solo Infusion of Gammagard S/D!

The people at Accredo were great and sent me tubing to help slow down my infusion rate, so I expected things to be much better.

I made some rookie mistakes this time:

• Took my premeds 20 minutes after adding the saline to the powder. By the time I was ready to put the needles in I was pretty dopey from the Benadryl. It took 2 hours for the powder to dissolve completely, and another hour for me to get the needles in. Next time I need to take my premeds when I'm ready to start hooking up the needles.
• My nurses had suggested that I clamp off all needles but 1 to prime them, so I tried that this time. I primed 1 needle and put it in. Then I primed the next one, forgetting to clamp off the needle that was in me before pushing on the syringe. It hurt quite a bit to get the medication in at that rate, so I learned my lesson quickly. Probably wouldn't have done that if I hadn't been loopy from 50mg of Benadryl.

Throughout the infusion I had pinching and swelling at the infusion sites that I hadn't clamped off during priming, and had to turn the pump off twice for 15-minute breaks to allow the medication to absorb. It took me 3 hours from the time I started mixing the Gammagard S/D until I started the infusion, then the infusion itself took 5 hours due to using 60ml/hr tubing and taking breaks.

Because I'd taken 2 Benadryl 2.5 hours before starting the infusion, I took another 2 Benadryl 4 hours later and really struggled to stay awake long enough to swap out my syringes in the pump. After another couple of hours I had a slight fever (99 degrees, but my normal temp is 97-ish), headache, and was starting to feel achy in my lower back, so I took 2 more Tylenol.

After the infusion was over I felt a migraine trying to start at the base of my skull. I didn't want to take any more Tylenol, but I took 2 Aleve (not supposed to because of my stomach) and a Clonazepam to help relax my muscles.

Next Day...
This morning I woke up with a migraine threatening (not too bad though, I was still able to work). I took 2 Tylenol without it helping much, and took to Ibuprofen after a few hours when I wasn't getting much relief. I finally called my chiropractor and he was able to help a lot by massaging at the base of my skull and my shoulders and neck. I've been tired all day and worked on my laptop in bed because I didn't really feel energetic enough to sit at my desk all day. Nevertheless, I think this is the best drug for me of any that I've tried so far. My reactions to Carimmune and Hizentra were pretty bad, with the Hizentra being worlds better than the Carimmune. I really believe that my non-existent IgA is a huge factor in how they affected me.

Eleventh IVIG Treatment

So the Hizentra did not get approved in time for me to avoid going back for another infusion at the infusion center. Once again I outlined the rates and transitions that I wanted, and hope to avoid hassles with the nurses.

I'm having my infusion right now. It's going well, and I'm hoping that I'll have very few reactions since I'm on prednisone and they gave me my normal 50mg of Hydrocortisone as well. I'm keeping them to my usual rate of 25 for 30 minutes, 50 for 2 hours, and 75 til the end. With the additional steroids and low speed I really hope this one will be a good one! 

I arrived at or before 8:00 AM, and they took me in late...maybe nearly 9:00 before they started. I was finished and sitting on the bench waiting for mom to bring the car around by 5:15, so it was at least 8 hours long. As far as reactions go I'm doing well, but I think the 2 different kind of steroids are playing havoc with my emotions. I feel like a wreck and that everything I want and need completely conflicts with everything else I need and want. I took 1/2 a clonazepam when I got home and slept for awhile, and am now listening to soothing music and playing a game trying to be calm and let go of these awful steroid emotions in a healthy way. 

Eighth IVIG Treatment

IVIG #8

Saturday, July 17, 2010
Today when I walked into the infusion center at 9:30, Jane (my nurse from infusion 7) introduced me to Christina, who would be my nurse today. She assured me that she'd told Christina to keep the speed at 50 cc/hr or slower. I was happy to hear that because I'd prepared myself to argue to keep it below 75. Christina was sweet, and when she started the IV it hurt less than usual. No blown veins, and no other problems. :)

I started out watching a movie, but I got too sleepy as the benadryl kicked in and took a nap. Mom woke me up at 1:00 because she got worried that it was going so slowly that the nurses were going to give me attitude near closing time, so she asked the nurse about increasing the speed to 75 to make sure that I was done in time. That was when I learned the conversion to calculate the amount of time it takes to do an infusion.

Anyway, the nurse raised the rate to 75, and we finished at 4:55. My next infusion will be August 6th at 8:00 AM. That way if I need to keep it at 50 all day, I can! :)

The 75 rate seemed to work for me. I wasn't dopey after my nap. I finished my movie and spent some time on the computer.

After my infusion I had my mom take me to visit my brother, and we hung out with him, his girlfriend, and a few of their friends for about 3 hours. I had a really great time, and still felt good when we left. I did however, need to leave because they were smoking a lot, and it was really starting to aggravate my lungs. We then came home. My one big concession to resting today has been working on my laptop in bed rather than sitting at my desk. Anyway, it's been a great day overall, and I think I'm ready to sleep. :)

Update

Monday, July 19, 2010 

I had my infusion on Friday, and yesterday (Sunday) I went out with my boyfriend and his son to a park for a play date with other children. Being at the park was fine, except I was a little paranoid about playground germs. I tended to pace a lot because everything seemed sticky and dirty and I didn't want to touch anything. As a result, I probably expended more energy walking around there than I should have and thoroughly exhausted myself. I'd thought that it would be no big deal to go on such a simple outing since I'd had a day to rest, and the infusion had gone smoothly, but I really over-estimated my abilities. Due to the circumstances I was stuck with walking around and sitting when I had to until my boyfriend was able to take me home a few hours later. By that point I was so exhausted that I just wanted to curl up in a ball and cry myself to sleep. I just wanted to do something normal with people that I care about, and that was too much. I know I wasn't fun to be around either.

Another infection and my doctor visit today
Friday, July 30, 2010

I have been so exhausted lately, both emotionally and physically, and for at least the last 3 weeks. I went to my doctor today because I have a sore in my mouth that I knew last night was infected (I still have my wisdom teeth and I'd bitten the inside of my cheek with it), and my sinuses have been stinging for days along with headaches. Anyway, I have the beginnings of a bladder infection, sinus infection, and possibly the beginning of pleurisy. Because I rinsed my mouth with hydrogen peroxide last night and this morning, she said that the sore is not infected, so I'm just going to keep using the hydrogen peroxide on that. She gave me a prescription of Levaquin for the sinus/bladder infection, and I hope it will take care of pleurisy too if that's really what's happening.

We talked about whether it would be wise to have my wisdom teeth removed (no pun intended) because I bite myself a lot, and she said that it's really up to me, but I should have it done while I'm on antibiotics if I want them removed. I'd do it during this round of antibiotics, but I also need to do it soon after an IVIG treatment. I might put it off another 6-mos or year, I mean, I've been putting up with this since I was 17 or so, what's another year?

We also discussed a referral to see Dr. David B. Lewis at Stanford, and it turns out that she knows him! She said she was happy to refer me to him and that I should have someone really knowledgeable treat me, and she even told me that if I want to transfer my care to him that I shouldn't worry about hurting her feelings. I thought that was really sweet, because I was worried about that even for asking for a referral. However, I think that seeing him as my regular CVID doctor would probably be cost-prohibitive especially because he's out of network. I expect that I will keep him as an annual visit kind of doctor or every 6 months. Still, it will be awesome to see someone who's focus of study is primary immune diseases! :)