Oh, I’ll be free… (immunoglobulin infusion success)

The first time I ever passed out was in a blood plasma donation clinic in Madison, Wisconsin. My brother, who had attended the University of Wisconsin before I did, tipped me off that they paid quite well for plasma, so every so often I would go spend a few hours in a big comfy chair with my vein tapped. On this particular day, I suddenly got very dizzy, nauseous and clammy and the next thing I knew I was coming to with ice packs under my neck and the chair tipped all the way back so my feet were in the air. I was sweaty and shaky, but I stayed until the plasmapheresis was over and got my cash. I didn’t think twice about it and continued to donate plasma until one day, during the prescreening tests, I came up positive for heroin. It turns out it was because of the poppy seed muffin I had for breakfast, but it didn’t matter, I was not allowed to give plasma again. One abnormal test and you were no longer a candidate. I never asked what plasma was used for and it certainly never crossed my mind that I, myself, may need a medication made from thousands of people’s plasma donations.

I’ve been getting weekly immunoglobulin infusions for 4 months now and it’s become routine (prior posts about this treatment can be found here and here). Not only routine, but to keep the success going, my superstition causes me to keep everything identical each time. I drink 4 liters of water the day before, the day of and the day after my infusions. Every Monday, I tidy up, run the Roomba and take a shower. I drink electrolytes, make my chicken and vegetable soup and don’t take any supplements. I take 3mg Prednisone, remove the saline bag and Gamunex from the fridge and wrap the fluids in my heating pad. When my nurse arrives, I get into bed and she hooks up the IV and sets the pump. Half an hour later, I take 650mg Tylenol, 25mg Benadryl and 10mg Zantac and then, before the Benadryl kicks in, I prep the Gamunex (I have to suck it from the vial into a fat syringe, which is surprisingly hard to do and painful on the hands). After the saline has been running for an hour, I insert 4 subcutaneous needles into my thighs. I could use wider tubing (for a faster infusion rate) or fewer needles, but, again, I’m sticking with what works, even if it’s not the norm for other patients. For the first few months, I did change where I inserted the needles, trying different areas on my belly and legs, but now I stick with the inner thighs which proved the least painful for me. I then fall into an antihistamine-stupour sleep and my (wonderful) nurse leaves once my husband gets home. In theory, she could leave as soon as she has inserted the IV catheter, which would be a half hour max, but because of my history of reactions and anaphylaxis, she’s extra cautious. By 8pm, I can disconnect the IV, remove the infusion needles and go downstairs to make dinner (this treatment makes me ravenous).

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When I first started infusions, I would have to take more Tylenol and Benadryl at around 9pm, my sleep would be horrid for a few nights from the steroids and I’d be dragging and headachy for at least a day afterwards. Recently, besides sleep, which will be my nightly nemesis forevermore, it seems, I haven’t had any problems. No need for extra meds, no dragging, no headache (except later in the week, which could be because I drastically drop off my hydration). In fact, it almost feels like my body is eagerly drinking up the infusions each week. In fact… the last 5 or 6 weeks have been… so nervous to say it (cover your ears, gods!)… good. Some of the best weeks I can remember. I feel freer — less restricted by pain, less confined by finite energy reserves, able to push boundaries without fear. My headaches have been more infrequent, my skin is better, my debilitating neuro symptoms have been more intermittent. I’ve been driving to nearby appointments again and I’ve been able to talk to the point of being hoarse, but without a weak voice. This last thing is very exciting to me.

My pilot brother was here on a layover and I was able to talk and laugh with him for almost 6 hours. My voice was tired, as if it were an unused-muscle, but it wasn’t weak in that way it’s been for years where I could barely contract the muscles to get the air past my vocal cords (or something). I was most definitely dizzy and deflated from the energy expenditure (my brother is a bottomless well of entertainment and conversation), but I didn’t have payback. Before he came, my brother texted me and said, “I’d love to see you, if only for an hour” and I realised how much worse I’d been the last time he visited in 2014: I remember wilting weakly an hour into our animated discussion. What glorious freedom to ignore the lightheadedness and tightening muscles, ignore the raised heart rate and blurring vision (because I’m still very far from normal), and not be terrified of repercussions. To have the option to push through! In the past, I’ve crawled to my room mid-visit — not out of cautiousness, but because there was no other choice and I always feared becoming permanently worse if I strained too much against the restraints.

This uptick could be because of a liter of IV fluids each week — it would explain why I’ve been having bad days later in the week — but I don’t think so. I usually feel kind of puffy and swollen afterwards and my blood pressure hasn’t increased at all; it stays steadily around 85/45. We’re considering experimentally doing some infusions without fluids and see how I get on, but I’m hesitant because, like I said, I like to keep everything consistent. Also, in the past I’ve asked so many doctors to help me with a trial of weekly IV fluids to see if it would help dysautonomia symptoms, now that I have them, I don’t want to give them up.

I want to mention one small thing that I’m incredibly excited about, which will sound so insignificant to most people. About a year into this illness, a few things happened to my body seemingly overnight and they always make me quite sad. The whites of my eyes changed colour, vertical ridges appeared on my once-smooth nails and I became allergic to my platinum engagement ring, which had been my grandmother’s and I’d worn 24 hours a day for years. Every so often over the past 3 years, I would put my ring on and, after a few days, I’d develop big itchy, sore bumps and discoloured skin and have to take it off again. I tried again just after Christmas and, 4 weeks later, I’m still wearing it with no problems. I want to add loads of exclamation points to this!!!!!! For me, that is so much more encouraging than IgG blood tests in the normal range or being able to walk more steps each day. My body has stopped rejecting something — a precious thing — that swiftly angered it over and over for so long. Rejoice. 🙂

Feeling emboldened, I asked my doctor if we could increase the dose or the frequency of my infusions or if I could add in a new treatment (antifungals, antivirals etc.). She said no — and I quote: “You are exactly where I want you to be.” That is so great to hear and such a reversal from my usual position of moving much more slowly than my doctors would like. She wants to continue my treatment indefinitely, raise my IgG levels as much as possible and then retest for infections in about 6 months to get a new baseline.

Insurance coverage always scares me; I’ve heard such horror stories of the battles to get treatment approved and, even after approval, actually paid for. My infusion bills were $943 for the first 3 months and I feel very fortunate that it’s so low. SCIG is the only thing that I can definitely say has helped in 4.5 years of being sick and, after 6 doctors refused to help me get the treatment, I feel immeasurably grateful to Dr. I for not only suggesting IVIG herself (I didn’t bother to ask because I’d given up at that stage), but allowing me to start on such a low dosage and increase slowly. No immunologist would have agreed to this. Yesterday I got this letter and almost wept (with joy). Thank you to the good doctors and nurses, to everyone that donates plasma (especially the broke college students) and even (in this case) to the all-powerful insurance companies who help perpetuate this dysfunctional healthcare system.

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I wrote this post on Thursday, the day after I’d driven to the dog park by myself, feeling victorious, and delighted my Bowie by walking further around the path than I have since being sick. I was still doing okay the next day and wanted to finally update everyone on my exciting progress.

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I’m not saying the chronic illness gods read my blog post draft and decided to tip the scales in the other direction because that’s just crazy nonsense, everyone knows that. But I did wake up not very good yesterday and I’m even worse today, with a bad migraine. Don’t get me wrong, I constantly remind myself that my husband used to have to wash my hair, but it’s still difficult to let yourself get a little bit excited (and in reality, “get a little bit excited” in my world means I’m thinking, “I’M GETTING BETTER! THIS IS THE YEAR! I’M GOING TO LEAVE THIS DISEASE BEHIND! I’LL BE FREE!”) and then have such a harsh reminder. Maybe the difference now is… I’m not scared.

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8 thoughts on “Oh, I’ll be free… (immunoglobulin infusion success)

  1. Jak says:

    I know how hard you’ve fought to get your infusions, despite being terrified of how you’d react to them, and am just thrilled they seem to be helping so much. Whoop whoop 🙂

    You’re bound to still have bad days, even healthy people wake up some mornings feeling off and shattered for no particular reason – recovery is often a 2 steps forward 1 step back journey and it’s not until a year has gone by that you suddenly realize how much progress you’ve made.

    It’s fab to see photos of you out and about with your furry kids and for you to be driving again – just don’t try to do too much initially. You’ve been very ill for years and are weak – it’ll take a long time to get your strength back. I’m excited for you though! 🙂 x

    Liked by 1 person

  2. Whoooohooooooooooooo !!!! xx

    Liked by 1 person

  3. Laurel says:

    So happy to hear the infusions may be helping! Wonderful news! Try not to let the bad days discourage you. I hope you continue to see progress! xoxo

    Liked by 1 person

  4. Aisling says:

    So great to hear! It is so true. Getting rid of the fear has been the biggest contributor to my recovery this year I’m sure.

    Liked by 1 person

  5. Mom says:

    I noticed the ring on your finger and forgot to ask you. That’s great. Please let the hard days become less and less

    Liked by 1 person

  6. Mary Doyle says:

    I’ve read your blog for quite a while but have never commented.
    I’m so glad that you are doing the infusion. I became ill 11/1/08, went to many specialists, and got zero help. Finally in May of 2009 I went back to a former family doctor who specializes in environmental health and allergy. He was the first doctor to spend time with me and agree that I was seriously ill. At the first appointment he started me on a series of gamma globulin shots, one every two weeks for 5 months. That was the first thing that made a dent in the initial worse-than-flu illness. I lost my perfect job that I was hanging onto. Many completely debilitating symptoms: five kinds of horrifying spine/head aches, could not grate a carrot or pick up a paper off the floor, not one errand for 2.5 years, 24/7 severe body aches for years, many forms of cognitive impairment and loss of ability to cope and deal with normal life decisions, hyper allergies, etc,etc. Wonderful husband (now deceased) took care of me. It took 7+ years and many stages of symptoms but I am now mostly recovered and have my life back. As recent as late 2014 I was still debilitated with flare-ups ever 5 days like clockwork. Now I only have about 3 minor 1-day flare-ups per month. If you want more details about the journey and things that I high think helped my recovery I’ll be very glad to share them with you. But I just wanted to encourage you that your infusions are very likely a big step in the right direction. I wish you well.

    Liked by 1 person

  7. […] a few days after my last post where I told the gods to cover their ears (which they obviously didn’t do), we were watching […]

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  8. Siv Garstad says:

    Hi I am a 52 year old woman from Norway with diagnoses
    ME, Fibromyalgia and Cronic Lyme disease . Im allmost finishedc with a 2 month long AB treatment. Dont feel nuch better 😔 I really want to try out Gammanorm, but I am struggeling with finding a doctor that is “on board” . This was encourraging reading so now I really dont want to give up, Thank you for sharing. I will pray for you ( I usually dont pray, but sincee I got sick on the 8th of Marsh 2011, I startet to pray for myself and others with chronic illnesses)
    Hope you conttinue on this good path you are on right now
    Hugs and kisses from Siv (mother og f 5, younest lives ar home, he is 10 and so far the only medicine that helpsme

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