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! :)

Immunologist Appointment

I saw my immunologist yesterday, and we agreed that when I see her in September she'll set me up to start on Hizentra SubQ. I'm excited, and would like to start sooner, but she's kind of swamped and will be the first doctor in her department to start a patient on SubQ. Her nurse is on vacation for the next 5 weeks, so she wants to wait until her nurse is back to help her with the forms. I gave her a copy of my insurance card just in case it turns out to be easy enough for her to set it up without her nurse, but I'm not holding my breath over it. She said she has an even more complicated patient right now who's needing a lot of her help and she's having to do a lot of research to help this person. I don't begrudge that since she helped me the same way, and it's awesome to know that your doctor cares enough to spend that kind of time to investigate and try to find the best answers. 


She'd never heard of Hizentra before, she'd only heard of Vivaglobulin, but when I told her that they're made by the same company, she was less worried about doing the Hizentra than she was when I first mentioned the name. I'd considered printing off a copy of Hizentra info from their website, but didn't. I wish I had as it might have made things a little easier for her, nevertheless, she's willing to put me on it. From the time she left the office until the nurse came back in to give me back my disability form, my doctor had phoned the drug manufacturer and found out what pump to prescribe for me and was already trying to get the ball rolling. I really appreciate her attitude!


She authorized my return to work at 20 hours per week, and didn't give an end date for now, although I just realized that will be necessary for Cigna to cover my disability payments while I'm part time. Oh well, hopefully they'll be in the office tomorrow. ;)

Seventh IVIG Treatment

Infusion #7

Friday, June 25, 2010 

I'm getting my infusion right now, and it's been kind of strange so far. My doctor cut the hydrocortisone down to 50mg rather than 100, and then told me to cut out the Ibuprofen. 

I got really nauseous and nearly threw up and fainted when they first started the infusion. I don't know why, but I know that it was anxiety this time. It may have been because they blew a vein for the first time, and that just kind of freaks me out and hurts like the dickens! Mom got me some ice for my head, and I had to cut out the built-in bra on my tank top because it was putting too much pressure on me and aggravating the nausea.

The nurse started me at 25 cc/hr and raised it to 50, then 75, then 100. When it appeared that I would be done in 4 hours again, she slowed it back down to 75. I'm a little annoyed because I'd told her that I wanted to take the full 6 hours for it to see how much better I'll get.

Mom made a point of telling the nurse that she's recorded my infusion start time as 10:05, but that's more like the time they started the Benadryl drip. When she complained about it, the nurse dropped the speed back to 50. I'm really trying to find out what works for me, and them trying to rush it and going all over the board for speeds is probably not going to show me what an "ideal" infusion can be like.

I'm really gearing towards Sub-Q now :)

So, the infusion finished at 50 and took about 7.5 hours. I felt great when I left and was able to walk out of my infusion center for the first time rather than leaving by wheelchair! I'm so happy about that! I feel normal or maybe better than normal and I have some hope that these treatments are going to work for me now. Yay!! :D

I think next time I'll tell them to max out at 75 & just leave it there.

Update

It's now the morning after my infusion and I feel the best that I've ever felt after one. In fact, I feel like if I were working, I'd have no problem going to work within a day or so. The only things I notice today that might be from the infusion are lower backache and a headache. I took a Benadryl before bed to help with any lingering side-effects.

I'm amazed!  

Tuesday, June 29, 2010 

I had my infusion (#7) on Friday, and as I said in the previous journal entry, I tried to keep the speed of it down. I can't believe what a difference that has made to how I felt afterwards! I mean, normally I have some trouble breathing, I'm a zombie, itchy, and can barely walk during and after the infusion. Then, when I get home I have to sleep for at least 3 hours, and I'm so weak and exhausted that I can't even lift a normal glass of water. 

By way of comparison, when I left the infusion center, I felt good enough to walk out on my own 2 feet, then I only slept for an hour afterwards. I went home with my boyfriend that evening, and wasn't even concerned about being far from the hospital. Then, Saturday I went shopping at Best Buy and bought a router and upgraded my cell phone...so I was there for 3 hours, and had no problems. I did sit down while upgrading my phone, otherwise I wouldn't have been doing so well. Sunday I went to a baseball game with my boyfriend. Granted, he took me in my wheelchair to help stave off exhaustion and I wore a mask, but nevertheless it was such a tremendous improvement over any other time at least since I've started treatments, but more likely for the last 3 years since my seizures started. I started getting tired towards the end of the game, but after we got home I still felt well enough to go for a swim (another first in 3 years) before dinner. All in all it was a wonderful weekend, and I'm very hopeful that I will continue to improve! :D

Sixth IVIG Treatment

IVIG #6

Today I had my 6th treatment, and it went so much better than the previous 5! I'd gone into the infusion center on Monday and spoke to the charge nurse about how the last treatment caused me so many problems, and I didn't think that she would be very helpful as her response was "we can only slow it down if your doctor orders us to". When I walked in today I was dismayed to see that she was my assigned nurse, but she said "don't worry, I know what's going on, we'll take it nice and slow today". She started me at 25 cc/hr, and then increased to 50, then 75, and 100 at 15-minute(?) intervals. She told all of the other nurses to not take me up higher than 100! I don't know how it worked, but I was out of there at 2:30 after going through my usual 24g of IVIG, which is the same time that I get done when they take me to 175. I was much less dopey than normal too, despite having all of the normal premeds. I don't know whether the caffeine that I had early on caused that or whether it was simply that the infusion wasn't as overwhelming as usual. I feel almost normal right now, and I'm excited with hope that it might get easier for me to handle this and go back to work full-time! Here's a little tid-bit that the nurse told me about IVIG. She said that every brand has differences that impact the speed at which it can be safely administered. Some brands are highly concentrated, and therefore have to be administered at a much slower rate; whereas my brand is highly diluted and is generally well-tolerated at higher speeds. I guess when we compare speeds, we should also take concentration into account. I'm not sure where to find that information out but the one that they give me is called Carimune NF, and is the only brand currently available at my infusion center.


Update
Monday, June 7, 2010
I've been on Prednisone for about 6 days now...maybe a little longer, and am having some problems with side-effects. My doctor only gave me 20mg/day for 4 days, 15mg/2 days, 10mg/2 days, and 5 mg for 1 day. I'm about to transition to 10mg starting tomorrow. I feel like I've had too much coffee, feel very shaky, and have been having a lot of trouble sleeping at night. I'm trying to make a point to take extra calcium while I'm on it. The rash is clearing up finally, at least. I saw the dermatologist, and she agreed that it is eczema, but that it was triggered by my infusion a month ago (5/7). I'm having a 4-week break between infusions this time, so hopefully the rash will be gone by the time I have my next one on 6/25. In the meantime I've been avoiding any foods that I'm suspecting that I'm sensitive to, which is making grocery shopping and meal planning pretty awkward for my mom.

Fifth IVIG -- Continuing Side Effects

 I talked to my doctor yesterday about my infusion rate, and how the last infusion caused me to break out in hives for a week, and she said that they infused me an hour faster than she had asked of them. She said she'd tell them again to slow it down, and I told her about how a person from my support group said she gets it starting at 50 and increasing by 10 every 15 minutes. My doctor said that the infusion center wouldn't tolerate that because they "need the chair for other patients", and that it would take too long that way. Apparently my current rate (that they didn't do the last time) is starting at 50 and increasing by 20 every 15 minutes. I'm toying with the idea of calling to talk to the head nurse and find out when their slowest day tends to be each week, and having them schedule me for that day. I know they start their chemo patients first every day, but they might let me come in even earlier and let me stay as long as I need if it's not such a busy day. I think that way, when I go back to work I might be able to have my infusion on a non-busy day, and if I'm only out 1 day from it, it wouldn't be an issue.

My hands and feet are currently broken-out in a very itchy, scaly rash of small blisters. I believe it's a bad case of eczema, because the last time I had something like this the dermatologist said it was either athletes foot or eczema and she couldn't tell which. The athletes foot medication (even though it was prescription) didn't help at all, but when I used the super-strong eczema cream that she'd given me it cleared up right away. It hasn't been as effective this time, and I think that hand sanitizer has made the hand part worse.

*Note: The hives and eczema breakouts were both caused by the IVIG being administered too fast for my body to tolerate. I had hive breakouts every day for about a month, and it took about 6 weeks for the eczema on my hands and feet to clear up after another visit to the dermatologist.

Aftereffects of Fifth IVIG Treatment...and Worst Ever!

Space Cadet

All of this week I have not been functioning! I am very spacey, making lots of typos when I write, forgetting how to spell words that I KNOW, and unable to do basic math. On top of that, I've been misreading a lot of words and also unable to focus on much of anything. On Tuesday I completely missed a dentist appointment and didn't remember it until 10:00 PM, and I also forgot all of my medication that day up until 7:00 PM. That includes seizure meds and asthma meds, and I've kind of been wondering whether I've been having some absence seizures or something and if that's why I'm so out of it. One thing I do know is that I've had hives nearly every night since my infusion and have had to take benadryl every night so I don't spend the whole night scratching. I'm sure that's at least part of the spacey problem. I saw my therapist today and mentioned that I didn't think it was due to depression, although I tend to get into a similar state when I'm very depressed, but she agreed that I don't seem depressed at all.  

I definitely want to have them slow down my infusion rate because if this is all post-treatment stuff...which I think it is in one way or another...then that's ridiculous! One person told me that she starts at 50 and increases it by 10 every 15 minutes to 150. Considering I usually have mine at 175, that sounds like a good place for me to start. I hope that it won't be a big fight with nurses to get them to slow down, but I think my doctor will back me up on it.

Fifth IVIG Infusion

I had my fifth infusion on Friday, 5/7. It went very well, and I think that perhaps the nurse must have gone through faster transitions than normal, as I was done an hour earlier than expected. I haven't had any real side-effects other than exhaustion and weakness. Neither of them were as bad as usual, yet they both seemed to last longer than they have recently. I'm not sure whether that's due to the speed of the infusion, or just the thing that every infusion is different. I know that the nurse went to a maximum speed 175, which is my normal maximum. Today (Monday), is my first day to feel strong enough to sit at the computer.