Thanksgiving and my Fourth Gammagard Infusion

On Thanksgiving Day I had 2 asthma attacks and a migraine. I was doing ok, but the candles at dinner, smoke on people's clothing and perfume all served to aggravate my breathing and I ended up having a very embarrassing (all public attacks embarrass me) asthma attack in front of my boyfriend's family. They were great about it, and helped me get some tea and water (tea helps loosen my chest), and were very considerate and kind about everything. I just hate being the center of attention like that, especially when I don't know people that well. I took 2 Benadryl, had extra caffeine in the hot tea, and took my inhaler probably about 3-4 times.

Then we went to my home for dinner #2 with my mom. I was doing better and pretty much held my breath from the car to the house because of all the chimney smoke in the air (I was wearing a mask too). I sat up in bed to recuperate from the attack until dinner was ready. I felt hungry but exhausted and nauseous. When dinner was ready I was so nauseous I could hardly eat despite feeling hungry, and I had a migraine on top of it. I took some Tylenol for the migraine. On the way back to my boyfriend's house, when he put the car's heater on defrost the smoke sucked into the car, which triggered attack #2. Luckily it wasn't as bad as the first one.

The Infusion

Friday morning I woke up with the headache, but it wasn't as bad as the night before. I got ready to start my infusion and had just put the first needle in when I started vomiting violently and came very close to fainting. I was so sick that I thought I'd have to go to the hospital. My vision became completely obscured by what looked like snowflakes, and I wasn't able to focus for probably close to 5 minutes. My boyfriend got me a Zofran, and totally took care of me; about 10 minutes after that I felt better. I don't know why I threw up, but I do know it wasn't related to my infusion. I had to teach my boyfriend how to do my infusion because I was not functioning very well; he put most of the needles in for me. I had taken a prednisone about 40 minutes to an hour before I vomited, and I was hoping that I'd have enough in my system to keep me from reacting to the infusion. I also took my inhaler, along with the 2 Benadryl and 2 Tylenol as premeds. Once again I put the 60 ml/hr tubing in series with the 120 ml/hr, and the infusion lasted for a total of 6 hours. I had some swelling and pinching at the injection sites, but never enough that I had to turn the pump off. I didn't have any breathing problems either! I took my inhaler again 4 hours into the infusion, and I had a very slight tightness in my chest at the very end and took my inhaler once more. Overall, I felt that the infusion was very successful! :)

The Next Day

Today I woke up feeling very weak and shaky. I had trouble sleeping last night after the 2nd prednisone and ended up taking 2 Benadryl again to help me sleep and prevent reactions during the night. I eventually fell asleep about 4:00 AM and slept fitfully til noon. My chest hurts a lot. It hurts to breathe deeply or laugh or cough, but I'm hoping that's just from the vomiting yesterday, and not my lungs. I'm eating very cautiously and very small meals because I want to avoid a recurrence of yesterday. I'm still in bed because I feel so weak, but I don't have a migraine, and the shortness of breath I've had seems more related to the chest pain rather than asthma.

Visit to my Neurologist

The week  following  the infusion I was able to see my neurologist about the temporary blindness that happened after I vomited. He believes that the blindness was caused by a migraine and put me on a blood pressure medication called Verapamil to help relieve the pressure in my head. He said that there's a migraine specialist who he knows at UCSF who treats neurological migraines (ones with strange things like blindness, numbness, the room spinning, etc) with the short-acting form of it, so I have to take it 3 times a day. The medication seems to be helping because I've been having fewer headaches. 

Third Gammagard S/D Infusion

My doctor called yesterday afternoon, and told me she was calling in a prescription of Prednisone for me to take to help ward off headaches and breathing problems with my infusions. I'm to take 20mg 1 hour before my infusion and 20 mg more 1 hour after my infusion. 

I started mixing the Gammagard at around 5:00, and it took an hour and a half to mix this time because I paid more attention to it than I did last time. I rolled it gently between my hands. turned it over & over, and did that at more frequent intervals than the previous infusion. I took the first Prednisone when it was mixed. and took the 2 Benadryl at about the same time.

I've been having a problem with my infusion going too fast, and the pharmacy ships slower tubes to me, so I have a wide range of rate tubing (the only way to control the speed with my pump is by the size of the tubes...smaller tubes=slower infusion). Last week I used the 60ml/hr size tubing, and while it was better, it was still too fast, so today I got an inspiration for my infusion--I put 2 rate tubes in series to make the infusion even slower than last week! For those of you not familiar with the "in series" thing, it simply means that I attached 1 tube to the pump as usual, and then at the other end (where the needles would normally go) I used another rate tube, then attached my needles to the other end of that. The longer tubing makes the infusion slower than it would otherwise have been, so the whole infusion took about 6 hours.

This time when I primed the tubing, I clamped all but 1 needle off, and primed them all before putting any in my skin. Unfortunately, thanks to being dopey from the 2 Benadryl, I made a totally stupid mistake last night and forgot to unclamp 2 of my tubes before starting the infusion. I didn't realize the mistake until it was over, so I got the entire infusion in 3 sites instead of 5! I kept wondering why 1 leg hurt while the other one didn't. Thank God I'd slowed it down with the extra rate tubing, otherwise it would have been intolerable! 

I also had breathing trouble during the infusion despite the Benadryl &; Prednisone. It's so strange, I hope that goes away. The doctor told me that systemic side effects are rare with SubQ, but for some reason my body doesn't agree with that. The Prednisone did help with the headaches. I woke up with a slight one, and haven't felt too bad all day. I had a severe ice-pick type headache that lasted for a few minutes (normally they're just seconds), but it faded and I was ok. I took 2 Tylenol this morning for the headache though.

Doctors and Insurance Companies

Yesterday I was chatting with a friend who has been fighting with her insurance company for a year to try to get coverage for infusions, and she told me that they had finally agreed to cover her for a year!!! I'm so happy for her because she's been so sick for so long, and constantly had trouble finding doctors who would help her. It shocks me that so many members in my favorite support group have had doctors refuse to treat them once they found out that the person had CVID! Makes me think they swore a hypocritical oath rather than the Hippocratic oath! Sometimes these doctors will admit that the case is too complicated for them...but don't they consider referrals at least??? I mean, we CVID patients are desperately seeking relief from pain, gastrointestinal problems, breathing problems, skin problems and doctors just say "You're too complicated, get out of my office!"? What's wrong with this system?

Visit to the Pulmonologist

I went to the pulmonologist today and mentioned that I feel like I'm starting to come down with something. He asked me what my symptoms are, and I told him I feel a bit congested in my chest, I'm spitting up yellow/brownish phlegm in the morning, I have an urge to cough but am not coughing much yet, and I'm exhausted. Based on those symptoms and the fact that I need to avoid getting any more lung damage,  he prescribed a 10-day course of antibiotics for me. Unfortunately, it's one of those antibiotics that requires avoidance of all calcium and magnesium, so I have to quit all vitamins for 10 days because the warning on the label says "Do not take antacids Iron, or Vitamins/Mineral Supplements within 8 hours before and 4 hours after this medicine". I expect I'll be really tired without my vitamins!

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.

My First Gammagard SD Infusion...or....When You Feel Ready to Give Up On People, Read This!

Today I did my first infusion with Gammagard SD. I left the supplies and Gammagard in the box until yesterday morning, then I decided we were close enough to infusion time to set things out. I pulled out the gammagard boxes and got a bit of a scare. I knew that the medication was in powder form, and one of the ice packs had burst inside the styrofoam ice chest that it was shipped in. The Gammagard was packaged in plastic, but nevertheless, the ice-pack goo had soaked into the boxes--at least two of the boxes were moisture-soaked and splitting open. I was honestly afraid that the powder would be ruined and I wouldn't be able to do my infusion. I called Accredo to tell them what happened, and spoke to the warehouse manager. She informed me that the medication would not be compromised because it was sealed in a bottle within the package. I opened it up while on the phone and confirmed that the medication was all fine.

It was really interesting mixing the Gammagard. It is a powder that comes in a glass bottle with another bottle that contains sterile IV water. The nurse had me transfer 96mls of water to the powder bottle using a 60ml syringe. After combining the two, we had to let the powder mix in to the liquid. We couldn't shake or stir the powder in, and simply had to roll the bottle to gently mix the powder in. It took about an hour from the time that we combined them until the Gammagard was ready to infuse. The total volume that I infused today was 110 ml, and I'm honestly not sure how many hours it took.  The rate tubing that they gave me was very slow (as subQ rate tubing goes) at 120ml/hr, yet the infusion was much too fast for me. My legs (where I put the needles) were stinging and turned red and swelled significantly, although it probably wasn't as bad as on my stomach. I also was having some breathing trouble. When I showed my nurse the infusion sites, she had me turn off the pump because she said it was going too fast and that I wasn't absorbing the medication fast enough to keep up.

So...in addition to my infusion, my mom was having a crisis. For about 10 days she's been having trouble walking with one leg hurting and feeling heavy. Suddenly, yesterday before the nurse arrived, her leg started hurting so intensely that she couldn't put any weight on it. She came to my room using a carpet sweeper as a crutch. I had her lie down on my bed and we propped her leg up on pillows. I didn't know what to do as I was unable to drive (license taken away due to seizures), and I couldn't leave before my nurse showed up. When the nurse arrived I filled her in on my mom's condition, and she was concerned too. She said that if no one else could take mom to urgent care, that she would take both of us in after we got my infusion started.

The nurse arrived at 3:15, and because of waiting for the medication to mix and some things I had to do to get ready, it was at least an hour (maybe 2) before we started my infusion. She wheeled my mom out to the car in my wheelchair, and I put together an emergency bag for my infusion to take with me. Because I was infusing 110ml of fluid and the pump only accommodates 60ml, I had to take an extra syringe full of medication with me and ended up swapping out the syringes in the office at urgent care. We were at urgent care for 2-4 hours, and then sent to the ER. My nurse then drove us over to the ER, and she told the check-in nurse that we had to leave my mom there (mom was all for this) because of my immune deficient state. My nurse insisted that we get something for mom to eat before leaving, as by that time it was about 10:00 PM and none of us had eaten. She and I ran over to In & Out (nearest open place selling food) and she bought dinner for all 3 of us, then as we got in the car, a man knocked on her window and asked if she could jump-start his car. She turned the car so that the headlights were on his car and gave him a jump-start. She was very smart about it though, she popped the hood of her car from the inside and locked the doors. Turned out he was just an  honest guy with a dead battery.

After we dropped the food off with my mom, my nurse took me home and then headed home herself. I couldn't believe how gracious she was about everything all day, and she maintained a good sense of humor too!

I was worried about how my mom was going to get home. My brother lives in the area, but I couldn't reach him by phone, and my boyfriend lives 50 miles away and would have come except that he was sick and in pain himself. I'd given mom cab fare, but wasn't sure how she was going to get in when she wasn't even able to walk. I heard one of our roommates get home, and I told him what had happened and asked him  if he happened to hear her outside if he would let me know (his room is by the front door). He promptly offered to go pick her up and asked me to call her. I did, the doctor had just finished seeing her, and they released her. He went to pick her up and they got home about 1:00 AM.

People were really wonderful yesterday! 

About 2:30 AM I started getting a migraine (despite lots of hydrating in advance), so I took a Fioricet, and aside from some weakness and tiredness, I feel pretty good today!