ALL ABOUT IVIG

I want to talk about my success with IVIG (intravenous immune globulin) since this is something that I am frequently asked about by other patients. I’m in a very unusual situation where I administer my own IVIG and fluids through peripheral venous lines (not using a port or PICC) at home without a nurse. I feel extraordinarily fortunate to have been able to get this treatment at all, but it feels particularly fortifying during this pandemic. Not only because I am receiving a protective, difficult-to-access medication, but also because, when covid hit, I was in a position to continue treatment uninterrupted in my home without needing nursing visits that would increase my risk of exposure to the virus.

It’s also unusual that my IVIG is prescribed by a naturopath, rather than an MD (let alone an immunologist), and that I do infusions once a week rather than every 3 or 4 weeks, and that I was approved for a high ‘immunomodulatory’ dose without having one of the autoimmune diagnoses that is typically needed and without having to do a vaccine challenge. Also, I don’t have side effects from IVIG, which I find miraculous, but I think it is because of how careful (and controlling) I’ve been throughout the whole journey. I researched and advocated for myself at every turn — undoubtedly more than was really needed — but I have no regrets since it has been such a godsend and I’ve had no bad reactions.

The story starts when I went to see Dr. Chia in 2014 (almost 3 years after getting sick) and he ran a bunch of blood tests that no other doctor had bothered to explore up until that point, such as HHV6 and Coxsackie antibodies, T-cell counts, and total IgG with subclasses.

For anyone navigating the newly-sick morass, I want to point out that I had seen over 30 doctors in those first 3 years, trying desperately to find one big brain that might have some insight. Infectious disease, endocrinology, neurology, allergy, cardiology, rheumatology, sleep doctors, ENT, gastroenterology, functional medicine MDs — you are shunted from one specialty to another to another with no one willing to dig deeper. I am even including appointments with my OBGYN, ophthalmologist and acupuncturist in that count because I was chasing down every lead I could (maybe it’s all hormonal, maybe my eye pain will lead to a brain discovery, maybe ‘dark yin’ is my problem after all). The big issues were missed until I was able to see Dr. Chia and Dr. Kaufman (ME/cfs specialists in California) and — this is the part for anyone who might be overwhelmed with where to start — a local naturopath (ND). In fact, the best help I got in Seattle was from two different NDs: they thought outside of the box and dug a little deeper, like the specialists. And I don’t mean woowoo shit, I mean things like checking for an immune deficiency DUH since I keep telling you it feels like my immune system just broke one day. Soon after I traveled to California to see Dr. Chia, I found an ND who ran almost the same battery of tests which revealed the same abnormal results. The first ND, who agreed I needed IVIG, but couldn’t get it for me, tried a bag of different tricks aimed at increasing my IgG levels. They didn’t work, but I was very grateful to have someone try something. Point being, if you can’t see a specialist, I would advise finding an ND who will look at your immune system health and infections and who is willing to walk the long road with you, being patient while you try (and, in my case, most often fail) different treatments.

But, I got ahead of myself. Dr. Chia saw that my total IgG was low and so were some of the IgG subclasses. He said I needed IVIG, but he didn’t offer to get it for me (I thought at the time it was because he was in California, but I now know Seattle patients that get IVIG through Cali doctors, so I’m not sure why he couldn’t have ordered it). Once I was back home, I asked my 4 doctors if they could help me get IVIG (primary care doctor, rheumatologist, endocrinologist, ND) and they all said no. My PCP did go a little further by asking an immunologist colleague, but he said my IgG would need to be lower or I’d have to do a vaccine challenge, which I refused.

I had given up and stopped asking when I found my second ND (who was very different from my first; both have been helpful in separate ways). The very first thing she said after entering the room on our first meeting was: “You need IVIG.”  She had reviewed my lab work (she had reviewed my lab work!! I don’t think any other doctors had actually looked at anything ahead of time) and seen that my IgG was continuing to decrease over the months. I had hypogammaglobulinemia and fit the diagnosis for common variable immune deficiency (CVID) and she was confident insurance would approve immune globulin therapy.

Between that day and my first infusion, 11 months went by. I delayed until I felt I had thoroughly prepared in every way to keep myself safe. Anaphylactic or anaphylactoid reactions can occur in any patient receiving IVIG therapy, but I had a history of both (plus intractable migraines), so I was nervous and wanted to control every aspect of treatment. My doctor was patient and accommodating. I don’t think any other doctor would have let me take the time to tackle each concern and build up the confidence to take the plunge. I think of it a little like a lost year when I could have been feeling better, but, like I said, I really can’t have regrets when things went so well.

First off was figuring out how to safely take pre-medications for potential reactions to the immunoglobulin and how to get IV fluids (which would be administered before IVIG) without side effects. I was extremely reactive back then because of out-of-control mast cells and I had no safe rescue medications or pre-medication protocol. IV fluids had caused angioedema and breathing issues; I was so sensitive to Benadryl, I couldn’t even take drops without feeling anticholinergic-type symptoms; tiny crumbs of steroids made me feel like was hit by a truck, running on a treadmill and sedated all at once. I didn’t feel comfortable doing IVIG without having a rescue protocol, so, during that year, I worked on my tolerance and put together a safe plan.

First, my doctor put me on bioidentical hormones because there is some evidence that they can help with mast cell reactivity. Then, we tried IV fluids, but only 250 mls, warmed up and run at a snail’s pace (my previous reactions were from 2,000 mls of cold fluids run very quickly on the day my period was due (when I’m highly reactive); I didn’t know any better). I even found out I was fine with two types of normal saline bags, but not another. I slowly gained tolerance to Benadryl (dye-free capsules, only) and Prednisone (finding manufacturers with the cleanest excipients), taking bigger and bigger slivers until I knew I could safely premedicate before infusions. Those that know me understand that the symptoms that have scarred me the most are my mast cell reactions. They are unpredictable and violent. Full-blown anaphylaxis almost killed me. I can’t adequately express how jubilant I was to have a safety net, to have protection, to be able to put a protocol on paper that anybody could follow in case of an emergency and to have tools with which to arm myself before a procedure. Having intolerable side effects from the things that are meant to counteract intolerable side effects was a scary place to be.

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Next, I talked to my doctor about starting with subcutaneous infusions (SCIG), rather than intravenous because all of my research indicated that the former was safer. She agreed, thankfully, although she gently pushed for IV for years after that.  I also asked if I could start with 1 gram at a very slow rate of delivery and she acquiesced to that, too. NO allopathic immunologist would have agreed to that EVER.

Then I looked into a hospital infusion versus an ambulatory infusion suite (AIS) versus at-home infusions. I was told a hospital wasn’t an option and the AIS was staffed only with a nurse, no physician. If I had a reaction, the protocol was for the nurse to administer supportive meds and call 911, if needed. Well, staying at home was a no-brainer. I would have a nurse in my house, but, more importantly, I feel much safer with my husband there as an advocate. Plus, we live very close to an emergency room and he could whisk me there if calling an ambulance didn’t feel like the appropriate move. In the past, we have sat in our car in the ER parking lot, waiting to see how reactions progressed. The high price of healthcare in this country is a great deterrent.

Then I wanted to look into IgA deficiency. There is some research that low serum IgA and anti-IgA antibodies increase the risk of anaphylaxis and the remedy would be to use a very low-IgA brand of immune globulin for my infusion (says my Labcorp test result: “Patients with IgG antibodies against IgA may suffer from anaphylactoid reactions when given IVIG that contains small quantities of IgA. In one study (Clinical Immunology 2007;122:156) five out of eight patients with IgG anti-IgA antibodies developed anaphylactoid reactions when IVIG was administered.”). My total IgA and one IgA subclass had been low in the past, but neither my doctor nor the infusion pharmacist suggested that this should be a consideration — I had to get the info from other patients and insist (nicely) that we test my anti-IgA antibodies. Gamunex-C was the brand that had already been approved by insurance and I knew that I was very lucky to have it and might lose it if we had to resubmit an authorisation, but safety first. Gammagard could have been a safer choice since it has extremely low IgA content. It took an excruciatingly long time to get those results but, ultimately, I did not show anti-IgA  antibodies, so we pressed ahead with Gamunex. And I’m glad we did! One of my nurses commented that it is the “top shelf” immune globulin and it’s been good to me.

The final hurdle was scheduling. Back then, I was much sicker in the mornings — shaky and very low blood pressure — but that is the time of day when nurses typically arrive for long appointments. I always thought, if I became a home infusion nurse, I would offer nights and weekends, just like my preferred shifts in the restaurants. There must be more patients like I am whose vitals stabilize as the day goes on. Also, my period was looming, a time of the month when I am highly reactive, so I wanted to avoid that whole week (although this wasn’t as easy as it sounds because my cycle wasn’t/isn’t regular). The day came when things eventually fell into place and my wonderful nurse, Marie, came to my house to hook up the IV fluids and teach me how to infuse subcutaneously. She showered beforehand and changed her clothes because she and some of her other patients have cats. She understood my nervousness and didn’t rush me or complain even though she had to sit in one room with me in a straight-backed chair for 8 hours. Marie came every week for 16 months to hook up my IV, but, once we knew I was doing well on this treatment, she was able to leave quickly and I would disconnect my IV fluids and do the SCIG myself.

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We started with 1 gram infused through a 2-needle set and F30 tubing. That probably made anyone knowledgeable with immunoglobulin infusions laugh because it is SO SLOW. Like, unheard of. My nurse had to do a special order for the supplies because they are normally only used for infants. Over the weeks, we slowly worked up to 5 grams (eventually using a 3-needle set and F45 tubing — only slightly faster), which is a typical ‘replacement’ dose for a primary immune deficiency patient of my weight. I stayed there for a year and a half, not pushing my luck in any way. Slow and steady.

In 2017, a miracle: I switched infusion companies from Coram to Accredo (with nothing to which to compare Coram, I thought they were fine, but things have been much better with Accredo) and they suggested I learn to insert my own IV catheter for fluids. Uuh, yes, please! Actually, they suggested my husband do it, but he’s not good at these things and I am, so a nurse came over and gave me a tutorial and that was that. I was only “allowed” one training session, so I wound up watching a ton of YouTube videos, which is why I’ve now made my own, in case they can be helpful for anyone.

For over 3 years, I’ve been placing my own peripheral IVs each week. It gets easier and easier and, honestly, I feel so much safer. Although Marie was very careful, I am more careful because I have a bigger stake in the game. I do not want to ruin any veins or get an infection, so I am vigilant (and superstitious) about my aseptic technique and I rotate veins to give them a break. Every single week, for the entire 16 months that Marie was my nurse, she used the left median cubital vein (antecubital or, as my nurses called it, the “AC vein”). I never questioned it because it held up well, but that’s about 60 catheters inserted in the same place (what a trooper my vein was!). As soon as I was doing it myself (and discovered I was ambidextrous when it comes to IV placement), I started using a different vein each week. I have 6 sites that I use, but 2 of them (on the outside of my forearms) are difficult — the veins roll and there’s always more of a risk of having to do multiple pokes — so I use the cephalic and AC veins more often than not, even though it means having to keep my arm straighter. I don’t use my hands or wrists, partly because I wash my hands so often, it’s an inconvenience and partly because I want to save those sites for easy access if I’m ever in the hospital with a nurse that needs fat veins for larger gauge needles.

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Holy roller

Then in 2018, another miracle: I switched from SCIG to IVIG and was able to continue to do it myself at home. Not only that, but I was allowed to continue infusing once a week, which kept my levels more consistent with fewer peaks and troughs, which in turn kept my energy more stable. IVIG is typically given every 3 or 4 weeks for multiple days in a row, necessitating a peripheral IV be left in place for 3 or 4 days (I can’t even imagine; 12 hours feels like an eternity). This is one of the reasons so many people get PICCs or ports.

I am regularly asked how I managed to get self-infusion approved at home. I didn’t do anything. I didn’t even know it was something that was allowed. I lucked into it with a good doctor, a good infusion company and a good nurse.

The first year I was with Accredo, I had increased my SCIG dose from 5 grams to 10 grams. My legs (my preferred place for the subcutaneous needles) weren’t happy, though. They weren’t absorbing the medication as well as they used to and they were swollen and sore for longer afterwards. I was using 6-needle sets to try to stop leaking and I felt like a pin cushion. I also wanted the option of trying high-dose IgG (my specialist had said for years that I needed 20 grams/week) in the remote chance that insurance would approve it. So I talked to my doctor about changing brands to one with a higher concentration, which would mean less fluid infused into my tissue. I was still adamant that I didn’t want to try IVIG. I didn’t want to tempt fate and I was scared of medications going directly into my veins and causing an instant reaction. My doctor pointed out that my body liked Gamunex, so I could either stick with what we knew didn’t cause a reaction (because Gamunex can be infused by either route) or stick with SCIG and change brands. I decided that it felt safer to stick with the brand I knew and loved, so IVIG it was.

They sent a home health nurse to do the first IVIG infusion. I had already placed my IV catheter and run my fluids when she arrived and she said it was perfect. Once again, we started at a low dose (2.5 grams) and ran it very slowly. We worked back up to 10 grams a week over a few months. During this time, I changed from the first awful, bullying nurse to one I adored (we could be friends in a different life). Jennifer showed me how to run the IVIG after the fluids and made sure I did everything right, but one week she said, “I’m just a fly on the wall. You place the IV, you run the fluids and medication, you disconnect. There’s no point in my being here.” So she recommended to my doctor that I do it alone under the condition that I have a responsible adult available at all times during an infusion in the case of anaphylaxis. That’s how I wound up doing it without a nurse and I’ve never met anyone else who is in this same situation.

The final miracle happened this year: My insurance approved the high dose IVIG (20 grams a week, which works out to almost 2g/kg/month, what is considered autoimmune or immunomodulatory dosing). I’m not sure which of my ridiculously high titers got it authorised and I’m not going to question it, I just thank the universe each week and try to keep finding the money (my 20% copay is $1,400/month). I increased slowly over months and had some headaches in the beginning, but nothing now. I am energised the day after. It’s like liquid life-force. I only premedicate with 25mg Benadryl, 20mg Pepcid and 4mg of Prednisone and I could probably do less. The number one benefit to doing it solo is that I’m able to program the flow rate as slowly as I like, which ameliorates side effects. If I had medical oversight, I’m sure they would insist I increase the rate, if for no other reason than to get the nurse out of here quicker. Talking to friends who have dealt with aseptic meningitis or incapacitating migraines, it seems to me that flow rate being too high is the major precipitating factor.

IVIG changed my life. I started the first wee tiny dose on October 2nd, 2015 and improvements in ME symptoms happened very quickly. By January 2016, I felt confident enough to write about them. They marked the end of 4 years of a steep and terrifying downhill trajectory and the beginning of a very slow, but steady uphill trajectory for the past 5 years. There have been lots of setbacks, plateaus and crashes (scary ones and months-long), but, overall, I’m stronger and more able-bodied each year over the last.

There are so many things I’ve learned along the way that I want to share like: try to get shelf-stable bags of fluids. My first pharmacy removed the air from the bags of saline before sending them and I didn’t know that there was another option. Once the bags have been accessed to remove air, they have to be refrigerated and thrown out after 14 days. They take up a lot of room in the fridge, it take ages for them to come to room (or body) temperature and you can’t have extras on hand when they’re considered unsafe after a few weeks. My bags now can be stored at room temperature in my closet and their expiration dates are years away, which means I have them for emergencies and don’t need to go to the hospital if all I think they can do for me is administer fluids (which is what has happened so many times in the past with my vasovagal collapses).

This took on even greater importance when covid hit. I feel so lucky to have extra supplies and the ability to give myself IV fluids without going near healthcare facilities. When I’m doing the clean-out for an upcoming colonoscopy, my doctor wants me to give myself IV fluids, which I wouldn’t have been able to do without this lucky situation. And when I imagine the big earthquake or an end-of-world emergency, it gives me solace to know that I am trained and my home is so well equipped.

I’ve also learned that I never want to use gravity tubing and an IV pole when a pump and carrier bag is so much easier, safer and more precise. I don’t have to keep my fluids vertical and elevated, dragging a pole around the house; I can walk around with the bag holding the saline and pump on my shoulder like a purse. I’ve even gone to doctor appointments and run fluids in the car during our California road trip last year after a big blood draw.

I learned from other patients to prime the air out of the bags through the tubing before priming the saline (fill the tubing with saline), which seemed slightly safer than the way a nurse showed me using a syringe, which requires accessing the rubber stopper. Uses fewer supplies, too. Less plastic waste.

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Medical waste

I called B. Braun, the company that makes my normal saline, and learned how to safely warm the bags before administration, so I don’t react to the room temperature (which is chilly!) fluids. I figured out that running fluids at a slower rate (150ml/hour) cut down on post-infusion headaches and it was even more effective to bookend the Gamunex with 500ml of saline before and after, rather than running the entire liter beforehand.

I learned that I can keep using the pump for 12 hours after it beeps that the battery is low. Again, less waste. (Although, I wouldn’t sleep with a low battery, just in case.) And I learned that the Bodyguard pump’s beeps terrified my dogs because they were too similar to our fire detector, but the CADD Prism’s beeps go unnoticed.

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Bad beeper

Wonderful nurse Jennifer gave me a fabric one-handed tourniquet which has made such a difference to my independence and the comfort of my skin. She also taught me that if the ultrasite on the saline lock is going to be unattached for any length of time and I don’t have a cap for it, an old nursing trick is to stick it inside an alcohol prep pad (leaving the wrapper on) and secure it with tape.

Wonderful nurse Marie taught me how to use gauze to support the catheter if it doesn’t lie flush with the skin and how to tape a loop of tubing to your arm, which has stopped my IV from being yanked out many times when I snag it on something. She also always used alcohol prep pads and iodine to clean the insertion site, something which many find overkill, but makes me feel more confident in my infection control.

I learned the catheters with wings are much easier for me to insert than the ones without and that you can ask for sterile gloves rather than relying on the box of non-sterile gloves that they send by default. I learned that you can order sterile pads on which to lay your supplies and IV3000 adhesive dressing that doesn’t tear up your skin like the Tegaderm that comes inside IV start kits.

I figured out by trial and error that some veins need to be stretched taut and stabilised and, if you are inserting your own IV and don’t have two hands, there are ways to do this by twisting your forearm and flexing your hand. I also found out that some veins are close to nerves and your thumb might have pins and needles for weeks afterwards, but they will, thankfully, eventually go away.

During SCIG, I learned that there are handy rate and time calculators for subcutaneous infusions and that if you are having trouble with leaking, swelling, hitting blood vessels etc., that you can try different needle lengths and different needle brands and — the key for me for whatever reason — different needle tops (the soft adhesive ones worked best for me rather than the hard plastic ones that needed to be covered with Tegaderm). I also learned that fat is key to comfort — the medication was much better absorbed if I put the needles in the back of my hips/ top of my butt (saddlebags??).

The most important thing I’ve learned is that although most patients in online support groups ARE NOT MEDICAL PROFESSIONALS AND YOU SHOULD ALWAYS CONSULT YOUR DOCTOR ABOUT EVERYTHING, they are a wealth of information. Doctors and pharmacies didn’t tell me anything about how to manage infusions safely. The majority of my home health care nurses didn’t verbally educate me — it was up to me to observe, ask questions and do my research.

Inserting my own peripheral IV catheter.

Warning: Graphic medical procedure!

I have been trained to insert my own peripheral intravenous catheters. I am a patient, I am not a health professional. This is not a tutorial or medical advice. This is simply a video of my personal infusion practice and should not be copied or mimicked by anyone else. NOBODY SHOULD EVER TRY THIS THEMSELVES WITHOUT MEDICAL GUIDANCE AND TRAINING AND A DOCTOR OVERSEEING THEIR CARE.

*See full disclaimer below.*

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When I was learning to insert an IV, I couldn’t find many decent videos online (I was only allowed one nurse visit to walk me through it and I found watching people do it was even more informative). It’s not the best angle, but I’ll have to wait until my mother is visiting again to get a better video.

*HEALTH DISCLAIMER*

This blog is my own personal journey. The information and other content provided in this blog, or in any linked materials should not be construed as medical advice, nor are they intended to replace a one-on-one relationship with a qualified health care professional. NO information on this site should be used to diagnose, treat, prevent or cure any disease or condition.

If you or any other person has a medical concern, you should consult with your health care provider or seek other professional medical treatment. Never disregard professional medical advice or delay in seeking it because of something you have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately.

Believe it or not, an update!

I have so much to write about, so much to catch people up on and document, but the longer I go without posting, the harder it feels to break the dry spell. Each month, I think, “Write that in a blog post, you’ll want to remember that,” but I never feel like I can “waste” the time. Especially in the last 6 months. If you’re friends with me on Facebook, you know that I have lost all available energy for months to fighting horrific healthcare battles. Energy that could have been put towards conversations with loved ones, time playing with my dogs, reading or writing…

So here’s a recap: From November, 2015 to around August, 2016 I was slowly getting stronger from my immunoglobulin infusions. I estimated that they brought me up from about 15% of normal functioning to about 20%. That 33% increase was miraculous. It didn’t exactly change the way I lived my life (I still had the same symptoms, was still mostly housebound, still had to manage energy carefully), but it changed my control — things became predictable, which reduced fear and let me branch out. Payback was shorter, not as scary, I could do more and knew I wouldn’t make myself permanently worse. That last point was life-changing for me. For 4 years, it felt like anything I did made me worse, I was desperate to hold on to the functioning I had and couldn’t take many chances without being forced down a notch — and I was always so scared that the new lower notch would be forever.

So, last year we went to the Washington coast for 5 days and I didn’t feel terrible. I had two friends visit me at my house and we talked for hours and I was okay. My family came to Seattle for their annual vacation (2 brothers, sister, mother, spouses and 7 nieces and nephews) and I was able to go to their rental house 4 days in a row for extended visits. This was the turning point, though, I think. I left it all on the stage those 4 days with my family. Friends with chronic illness, you know what I mean — it’s such a difficult act to appear normal and, from what I’m told, I gave a great performance that long weekend. Each day I came home and literally crawled on all fours to my bed. I lost 3 pounds in 4 days because between each visit all I could do is lie in bed and hope for a enough recovery to try it again. There wasn’t a moment that the payback wasn’t worth the incredible time I spent with my family. I’ll have to write a whole blog post on it one day. My nieces and nephews are everything you want kids to be — sweet, kind, honest, inquisitive, funny. No bratty-ness, no meltdowns, no selfishness. My brothers are doing something right.

Right after that visit, in August of last year, I started to nosedive. I had an increase in migraines, sore throats, exhaustion, muscle pain, unstable blood pressure. I was trying out (very expensive) hyperbaric oxygen treatments at the time and thought they were either causing or exacerbating my symptoms, so I stopped those, but continued to go downhill. In November, I started the descent into health insurance hell that lasted about 4 months. I’m not going to get into it right now. There’s too much to tell and it’ll make me shake and cry angry tears as I type, which I’m not up for. Suffice it to say it is an evil, vindictive, nonsensical, black hole of a system and nobody has accurate information about anything when it comes to healthcare for people under 65 on disability. And, even if they do have the knowledge, it seems the vast majority of health-related representatives (or is it all humans? I’m guessing it is) are inept, lazy, selfish and genuinely couldn’t care less about helping someone in need. My friend Michael had one of these phone calls where he wound up saying, “How do you sleep at night?” to the representative who was outright lying to him. Essentially, that’s how I spent 4 months — all available energy every day dedicated to battling my brain symptoms so I could continue to micromanage every person who held my health in their hands, taking copious notes and making enemies, as I waded through the morass of phone transfers, misinformation, hours of stuttering hold muzak, false promises about call backs and looming deadlines… While thinking, how do they live with themselves? Not to mention incompetent, petulant doctors that I need so I can’t I leave them.

When my mother came to visit after Christmas, she said it might have been the sickest she had ever seen me. I wasn’t even close to the sickest I’ve been, but it still says something about the severity of my crash (to be fair, I had allowed myself to have one of those total meltdown, let-it-all-out, “I’m so sick of being sick” sob-fests in front of her — the kind that I usually rein in because they can make me more reactive and wipe me out — which can’t be easy for a mother to witness). My strength started to get marginally better in February. I think it might have been helped by an increase in my thyroid medication, but it was kind of a double-edged sword because I also became horribly hyperthyroid for about 3 weeks before I realised what was happening. I had also stopped going to my weekly appointments (physical therapy, myofacial, counselling etc.) and had stopped my immunoglobulin infusions because I lost insurance to cover them, so perhaps the break from obligations and weekly medications helped me gain strength.

This spring my husband, dogs and I drove to California for an appointment with Dr. Kaufman at the Open Medicine Clinic and we stayed 6 weeks for a holiday and to test how I felt in a different climate. I will write about those big events in another post. What I really came on here to document is how I’m doing now. I want to keep track of what I can manage and how bad the payback is when I indulge in social time. Last November I went out to brunch (out!) with 4 old friends (you can imagine what it meant to me to be invited). I’m pretty sure I appeared normal throughout the 2-hour meal, but payback was vicious. My calendar notes say: “very bad today, body totally shut down, in bed, shaking, crashing, crying, guts feel swollen and full of bricks, heart, muscles, eyes burning.” It lasted days. In early February, my brother was at our house for 7 hours. I spent his visit relaxed on the couch in my pjs, but we talked and laughed like normal people, animatedly, and I didn’t rest once (unheard of a few years ago). I went to bed that night flying high, so happy from our conversation, so grateful to feel fine… And then, 3 hours later, woke up in the middle of the night feeling poisoned, shaking all over. My calendar says: “severe payback, swollen throat, can barely swallow, hard to breathe, every muscle in pain, bad stiff neck and headache, shooting pain in bowels, nose stuffy and runny.” The worst of it only lasted about one and a half days.

Yesterday, we had family over for brunch to celebrate my birthday. Although the whole shindig lasted 3.5 hours, there were only about 2 hours during which everyone was here — 4 adults and a child, not that many people. My friend Z said I looked great, she was so excited by how different it was from other years. She said, “I know you’ll pay, but today was normal.” This is everything I could hope for, BUT… the big but… But, it was hard. I can power through now, I have the ability to put on an excellent performance. If my neurological symptoms stay away, I can do quite a bit physically (although standing for a long time still causes excruciating pain). So, yesterday I showered, dressed, got out plates and cutlery, made some waffles and chatted with my family. That’s about all I did before things got difficult. There’s this weird thing that happens when you’re ill, but you’re putting on the normal act: You lose time. Or at least I do. Do any of you? For example, I remember everything about the first hour yesterday — when I was chatting with my husband and sister-in-law. Then our friends and their daughter arrived and things are a little fuzzier. I remember the conversations, but they’re not in sharp focus. Then my sister and her dog arrived, right around the time I wanted to make the waffles and apparently that’s when my mind went into … not quite “survival” mode, but “keep it together” mode: I was talking to 2 people in the kitchen while trying to focus on cooking and, although I made good waffles and I’m sure I said the appropriate things at the appropriate times during the conversations, I cant remember any of it clearly and couldn’t tell you what we talked about. Same thing while we ate — I clearly remember how delicious the food was (of course I do), but recalling things that were said is akin to trying to remember conversations I had while drunk, it’s murky, and it worries me that I was rude or unresponsive — to my favourite people, who made the effort to visit us, no less.

When I was saying goodbye to them, I could barely see. My vision was tunneled, I had a wicked headache and my brain was a buzzing scream, but being the fastidious person I am, I couldn’t not load the dishwasher. This tipped me over the edge. I was staggering around the kitchen, using immense effort to coordinate my muscles and concentrate enough to lift and place dishes. My eyes weren’t tracking properly, my heart rate was running high and my legs were burning terribly, but I just wanted to come to an end point… Stupendously stupid stupidity. I slid to the kitchen floor, panting, crying, literally unable to walk out of the room. I slurred: “Nothing is worth this. I was trying so hard to be normal, but no social time is worth this.” My husband said, “Why don’t you just be honest?” and I said, “Because THIS is honest.” On the floor, weeping is honest. He helped me to the couch, I was having a hard time sitting up, it was just utter energy depletion, muscles unable to work. I immediately fell asleep in a sort of emergency power-down. I started to feel a bit better about 5 hours later and today I’m okay besides another bad headache and stiff neck. That’s the difference now — when it hits, it hits hard and scares the bejeesus out of me, but it doesn’t last long. So I take it back, it was worth it. I ate decadent food in the warm sun in our beautiful garden with some of my favourite people on the planet (and to Z’s credit, she tried to stop me from over-exerting myself over and over and I bullheadedly kept telling her, “No, I want to do this! I’m fine!”). But of course it was worth it and I’ll keep trying to make this life have more life in it and repeat to myself during the scary times: this, too, shall pass.

Grab that cash with both hands and make a stash.

This is a hard one to talk about. It’ll be more of a rant. And I’d like to preface it with all of the obvious about how grateful I am that we were in the economic position we were in when this illness started, how grateful I am that I had a few years of good earnings and decent savings, how grateful I am that my family is healthy and has never been bankrupted by health woes. I am, I truly am, and I think about–probably too much–what must happen to others with a severe chronic illness (that has no knowledgeable doctors and no decent treatment) who are in worse financial shape than we are, without our resources, who are in countries steeped in poverty, refugees fleeing wars… on and on… I do know how lucky I am. But, I’m scared. Mostly because I don’t know what treatment to spend money on and what to reject.

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Recently, after 6 months of immunoglobulin infusions, I got a slew of bills that I didn’t anticipate. It turns out that for my itsy bitsy dose of 5 grams each week, I pay $164 after insurance. Out-of-pocket. That’s $655 per month. If I had known this before starting, would I have done it? I don’t know. But now that this is the only treatment that has helped me, how can I stop? And I’m in this tricky spot. I have private health insurance because I was too scared Medicare wouldn’t cover these treatments (also because Medicare won’t cover acupuncture, nutritionists or physical/myofascial/craniosacral/massage therapy — some of the only things that have made a difference in my pain levels). After being told IVIG was not an option by so many doctors, knowing that I didn’t have a history of bacterial infections and a vaccine challenge is usually required for approval, and having Coram (the infusion service) tell me that Medicare hardly ever covers treatment, I was just too scared to give up the private health insurance that had already approved my treatment for the whole year. Of course, I have since heard from others that Medicare covers their IVIG or SCIG at 100%, but … how could I risk changing coverage now when my IgG levels have come up and that alone might disqualify me from continued treatment? I’ll have to revisit this next January when I’m eligible for Medicare enrollment again, but, if I’m still improving with my infusions, I don’t know how I’d take that leap of faith.

An aside for those in other countries or for those that don’t know this fucked up aspect of our healthcare system here in the U.S.: Medicare (government health coverage) isn’t free. You pay each month just as you do with private health insurance. It’s usually cheaper, but not always. It can range from $105-$771 a month, depending on your situation (the higher end is reserved for people who have not worked enough in their lifetimes to qualify. So, if you are struck down with a chronic illness as a young adult and you haven’t worked the requisite 30 quarters in a tax-paying job, you’re not married and you undoubtedly have little savings, then you get to pay the highest premium for our national health coverage– oh, but only if you’re lucky enough to be granted full disability, which very few ME/CFS/Lyme sufferers are). And don’t think that Medicare actually covers your healthcare in full, though. You will still have a deductible each year and co-insurance (the patient pays 20%, typically), you’re prescription medications aren’t paid for unless you get extra coverage and hospital stays can still leave you in horrendous debt. You can stay in a hospital for a few months for the low, low price of $1,260 (although skilled nursing facilities will be more because that price doesn’t cover people to care for you), but let’s take a pretty terrible example: 150 days in the hospital. In 2015, that would have cost you $47,565 out-of-pocket. If you had to stay any longer, all additional costs are your problem. The government washes its hands of you. But wait, there’s more! If you choose not to enroll in Medicare when you become eligible, your monthly payment when you do enroll will be higher–forever–usually 10% higher for each year you could have signed up but didn’t. In my case, if I’m covered by Medicare next year, I will be paying an extra $300/year because I didn’t enroll when I first became eligible. If I wait until 2018, I’ll pay a penalty of at least $440 that year, plus more each year as the premiums continue to rise over my lifetime. Lovely.

SO… Last month I finished up weeks of financial slog for our 2015 taxes and was happy to see our (and by our, I mean my because my husband’s medical expenses are only about a quarter of our total and that is solely health insurance premiums because he never needs a doctor, knock on wood, toba toba) out-of-pocket medical costs had come down slightly.

2012: $14,480
2013: $19,032
2014: $19,564
2015: $17,912

That doesn’t allay the fear, however. After utilities (sewer, water, garbage, recycling, gas, electricity) and mortgage payments, we’re left with about $20K a year to live on and medical expenses have been almost $20K a year since I got sick. That means most everything else–food, clothes, toiletries, dogs, phone, internet, gas for cars– comes out of our savings. I’m trying to be healthier, place fewer burdens on my system and subdue my chemical sensitivities by eating organic food, pastured meat and buying less toxic products. All of these things are more expensive. For the last year and a half, I’ve been paying $200/month for compounded medications instead of the cheap, generic, filler-filled ones. It hardly costs anything to get sick, but the system is rigged to bankrupt those that are.

I feel very fortunate that we had saved money before this happened, but it will run out eventually and I don’t want to make all the wrong decisions now because I’m frozen in fear of the future. Our day-to-day living is all-encompassing, so time slips by in survival mode and the big decisions never get discussed. I’m happy that we didn’t sell the house when I first got sick because we’re finally not under water and it might actually be worth what we owe again. But when do we sell? And do I switch back to generic meds? Do I stop supplements (around $100/month)? Do I stop seeing my doctor who doesn’t take health insurance? Do I not try human growth hormone or hyperbaric oxygen or nutritional IVs? Do I stop my immunoglobulin infusions?? Last year, I thought a time would come when we just moved somewhere very small and affordable, maybe a foreign country, and I stopped all medical visits and we tried to exist on pittance and make our money last as long as possible… But now that I’ve found a treatment that helps my functioning, I have renewed hope. Maybe I’ll be able to earn a living again if I keep making progress. How can I give up on that? Or should I accept the fact that this is as good as it’s going to get, income-wise? My husband will get older, he’ll be able to work his manual-labour job less and less and I won’t ever recover to the point of being able to hold a job… I think that’s the reality. I know a lot of people with this illness and many have made improvements, but I’m not sure if I know any that have gone back to full-time work.

So, we beat on, boats against the current, cut costs where we can, shop the deals online, grow some veggies, sell some stuff, and pray that in ten years time, the tides have changed for the better.

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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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