Third IVIG Treatment

IVIG Treatment #3

Friday, March 26, 2010 

Today I had my 3rd IVIG treatment. I went in at 9:30 and left at 2:30 PM. I had no bad reactions except before they started the medication I had a reaction that I had never seen before to either the Benadryl or Saline. My veins turned scarlet--you could even see the red through the paper tape! The red was darkest near my wrist where they inserted the IV, but I had streaks following the veins up to my elbow, and it hurt a bit. The nurse said that it was an indication of irritation to the surface veins, and after she gave me the hydrocortisone shot that I was going to get anyway, the redness went away and the burning stopped. I was very sleepy at the time, so it didn't phase me too much. My personal theory is that the reaction was caused by the IV needle going into my vein at the inner side of my wrist. I've never had an IV there before, and it was quite painful going in.

I fully intended to sleep, but mom found donuts in the infusion center, so I had one w/ a cup of real coffee, and the sugar/caffeine combo woke me up. I ended up staying awake and watching a movie with my mom. When the movie was over, mom read to me for a few minutes, then it was time to go home. After getting back home I had some lunch and then napped for about an hour. My wrist still hurts/stings a bit. I feel pretty good at the minute, but I'm trying to not overdo it...that's kind of like telling the wind not to blow. Anyway, just wanted to write a quick update, then I'm getting back in bed.

2 days after 3rd IVIG treatment

I'm feeling weak and tired still. I had hoped to feel more energy by now, but maybe I noticed it so much after that first treatment because I was so low when I started. I slept 12-13 hours last night, and am getting ready to get back in bed again now (I've been up 2 hours). I think that if I don't feel well enough to go in to the office this week that I'll talk to my doctor about going on short-term disability. It's just so hard to get my hours in every week, and I'm truly afraid that if I don't either get in to the office soon or go on disability I'll get laid off in May. I hate worrying about financial stuff when I'm in this condition. I think I'll try to just put it out of my mind for now, and trust that everything will work out. 

Went Out With Friends...

One of my best friends from out of state has been in town this last week, and I went out to dinner with her and a bunch of friends last night. After dinner we went to a pool hall, and I didn't play, just sat on a chair the whole time we were there and chatted. I wore a mask constantly except when I was eating at the restaurant. 

By the end of the night I felt completely exhausted. I had a bit of a physical melt-down where I got chills and started shaking uncontrollably. I went to bed, but felt like I didn't rest well, and I woke up too early this morning. I tried to go back to sleep, but after an hour or 2 without luck I got up and started working. I owed work 4 hours due to doctors appointments. 

After work, Mom took me to pick my kitty up from the vet's, and when we got home I was so exhausted that I tried to sleep again. No luck! I was supposed to go to see my friend again tonight, just to hang out at the house, but I'm too tired and I don't feel good.

On top of the exhaustion I have a headache, bit of sore throat and feel generally achy. Guess I overdid it last night...I wouldn't think that just sitting and talking would take so much out of me! We were out for a total of 4 hours. If I can't handle 4 hours of just sitting and talking, I'm not sure I can handle going in to the office either!

Second IVIG Treatment and How it Impacted Me Over the Next Week

I had my 2nd IVIG treatment on Friday, 3/5. We started at 9:30 AM, and I was finished by 2:30 PM. The nurse said the fastest speed she took me up to was 150. I had a sinus infection as well, so on top of the premeds I was also on prednisone and antibiotics (Clarithromycin?). The premedication that I had was: 

600mg of Ibuprofen 1 hr in advance,

0.5mg Clonazapam ~30 min in advance, 

25mg Benadryl by IV,

100mg of Hydrocortisone injection

The treatment went smoothly. I slept for about the first 3 hours, and then woke up and ate lunch. I only needed 1 bathroom trip despite all the efforts I'd made to hydrate myself. Mom and I watched a movie, and before the movie was over, the treatment was finished.

We went home and watched the rest of the movie, then I slept for another few hours. 

Yesterday (1st day after treatment), I was very weak and shaky. I slept in in the morning, but was overwhelmingly hungry so I got up for breakfast. All day I felt so weak that it felt like lying down took too much effort. Nevertheless, I stayed up all day. I read in bed, and did sudoku puzzles, then I took a bath since I didn't think I was strong enough to stand up in the shower. We went out for awhile then. I'd intended to stay home and rest more, but my boyfriend suggested we get some food while we were out, and that thought was very appealing. I mostly just rested in the car while he did his errands, but I went into 1 store with him (wearing a mask), so that I could pick out some slippers to wear at his house. I got in bed when we got home and read some more, then when I was ready to sleep I realized I was feeling so shaky that I probably wouldn't sleep well, so I took a Clonazepam. I slept well and woke up hungry after about 10 hrs of sleep.

I feel better today, not strong yet, but a lot better, and I hope that by tomorrow I'll feel great! 

My main post-treatment effects have been: exhaustion, hunger, weakness, feeling overly-emotional, shakiness, fuzzy-headed feeling. It's hard to say how much of what is caused by the sinus infection, sinus infection meds, treatment, or premeds. I know that last time I had the hunger also. It seems to hit me for days afterwards, and I get ravenous. I wonder whether that's due to the antibodies making my body more able to absorb nutrients from food?

Still Exhausted a Week Later...

3 Days After First IVIG

I'm feeling a bit better!

Sunday, February 14, 2010 

Okay...Day 3 after my treatment, and I feel a lot better today. I was sitting here at my computer and found myself "dancing" to a song in my head! I can't remember the last time I had that much energy! Even this little bit of energy is so worth what I endured for the treatment! I'm excited...now to make sure I don't overdo it...for me, that's the hard part! :)

First Day After Completion of First IVIG Treatment

Last night after the treatment I had a lot of trembling, shortness of breath, lower back pain and headache. I took medications to deal with those symptoms and finally felt well enough to lie down (can't lie down when I can't breathe). This morning I woke up and felt achy all over. I just wanted to cry from it. I've felt weak and wiped out all day, and have probably spent too much time sitting up at my computer. Time to rest.

My doctor called and said now that I've started treatments I can stop taking the prophylactic antibiotics and it's ok to even be around sick people. I think I might wait awhile to spend much time around sick people, but it's nice to know that I don't have to be cooped up and wear masks everywhere I go now! :) She also said to just continue treating the symptoms from the treatment and to not worry about them

Now I'll rest... ;)

My First IVIG Treatment

So...I had my first half-treatment today! They had hoped to get through 24g in 2.5 hrs, but that just wasn't doable. I got lower back pains as soon as they took me up to a flow rate of 100 cc's/hr, then they treated me with an additional 25mg (50mg total) Benadryl and 100mg Hydrocortisone. then they restarted everything and were able to get me up to a flow rate of 200 cc's/hr, but then I started having breathing problems. They stopped it again, called my doctor, and had me take my inhaler. Then they restarted it at a flow rate of 50 cc's/hr and left it there. All in all I was only able to get through 1 12g bottle, so I have to go back tomorrow morning to finish up. They said they're going to keep me on a slower flow rate, and not try to get me up to 200. I expect it might be along day tomorrow. Overall though, it wasn't too bad. They brought me warm blankets, and everyone was really nice.

I took the advice of everyone from my support group and took lots of vitamins, drank a lot of fluids, and brought snacks. I did get really really hungry and was very dopey from all the benadryl. It was helpful having someone with me to take care of the little things and to steady me when I walked to the bathroom. 

I return at 9:00 tomorrow to finish off the batch. The doctor says that I should be ok to be around crowds w/out a mask after the treatment is over...not sure whether I should go with that or not...

2nd Day of First IVIG treatment

Thursday, February 11, 2010 

I went back to finish the 2nd bottle of IVIG today, and it went much more smoothly than yesterday. Like yesterday I took 600mg of Ibuprofen an hour in advance, and called my Doctor to find out whether she would agree with me taking some prednisone also. She was out of the office, so I left a message for the other doctor, who didn't return my call until 7:00 PM....my appointment started at 9:00 AM! The good news is that I made it through the treatment without a hitch, and they got me up to a drip speed of 175! At that rate it will probably still take me longer than they had hoped for the treatment, but I'd rather get through it than have problems again.  

I pretty much slept through the treatment today, and for 3 hours afterwards too. I realized that yesterday the reason I wasn't able to sleep during the treatment or even all last night is that I took a full dose of my Alive multivitamin. It's so potent and gives me so much energy that if I take a full dose I can't sleep. I thought for sure the Benadryl would counteract that effect, but even the 50mg wasn't strong enough! That's a really good vitamin! 

When the other doctor finally called, he agreed that the prednisone is a good idea, and he said he'd tell my own doctor about our conversation. I was a little annoyed that he took so long to return my call, especially since I'd expressed that I needed to know before my treatment. On the bright side though, I was able to get through without it! I'm a little worried right now because I'm having some breathing problems, and I'm wondering whether they're related to the treatment, or whether I'm reacting to the sandwich I just ate. The treatment was over by noon today, so it seems a little far removed from the time, plus when my breathing improved yesterday, it stayed improved. I'll take my inhaler and see if that helps, and if I continue to have problems I'll go ahead and take a little prednisone. I don't really want to call the doctor back right now, I just wish I'd thought to mention it to him when I had him on the phone...it was just starting to trouble me then.

Here's a link to a good deal on generic Benadryl:

Childhood and Early Adolescence

I was born with health problems. For the first 2 weeks of my life my parents had to walk the floor with me and hold me upright so I could breathe. Despite repeated trips to the emergency room and an early diagnosis of asthma, I learned to walk and talk at an accelerated pace, and although I was small for my age, I seemed to develop normally.

I had all of the normal childhood vaccinations, as well as a bad case of chicken pox at the age of 5. I also have eczema, so the combination was brutal. Doctors prescribed antibiotics repeatedly for various respiratory infections, but I don't know what type of respiratory infections they were, or how severe.

When I was 7, my family moved to a cold climate, and I had my first major pneumonia during that very first winter. Mom came to wake me up one morning because I'd slept later than usual, and I didn't wake up. In fact, I was completely non-responsive, and she quickly determined that I wasn't just asleep. She and my dad rushed me to the hospital, and the emergency room staff pumped antibiotics into me by IV. They determined that it was most likely a case of walking pneumonia since no one had known that I was even sick. My white cell count was higher than a leukemia patient's, so they knew that I had a raging infection. After that illness, the doctors told my parents that I was going to keep getting pneumonia until I could go 2 years without needing antibiotics, and that even catching a cold would make me going into pneumonia.

I was referred to an Ear Nose and Throat (ENT) specialist at a children's hospital, and she did a second round of allergy tests, tested me for Cystic Fibrosis, and also tried to determine whether the convulsions that I'd gone into during my pneumonia were related to epilepsy. They confirmed that I had major allergies, but nothing else came of the tests. They changed my asthma and eczema medications, and the doctor told my parents (in front of me, because she was angry) that if I continued having such severe asthma attacks and repeated pneumonias that by the age of 30 I'd have the heart and lungs of a 90 year old woman. Because of that, I grew up thinking that I would die before I reached the age of 30, and had a certain fatalism that you don't expect to see in children.

As it turned out, going 2 years without needing antibiotics has been virtually impossible. There were some years where I'd have pneumonia along with ear infections and throat infections multiple times in one year. I would estimate that by the time I was 15 years old I'd had pneumonia over 20 times, and been hospitalized for 2 consecutive years if you put each stay back-to-back!