Reallly? So long?

Hello friends.

I suppose some of you have wondered if I have either perished or simply dropped off the earth. It seems to be some of both, and I admit to being rather down tonight. The past 15 months since I wrote last have proven quite difficult: I am taking my fourth different formulation of immunoglobulin, one of which brought with it two very serious cases of Aseptic Meningitis Syndrome (AMS); our insurance situation abruptly changed, so that well we do still have insurance – and I suppose it is fairly good insurance – the costs of it for some of the things I end up experiencing all too often have climbed more than 1000% (such as extensive in-patient hospitalizations); I have not yet finished my dissertation, as there are days and sometimes even weeks when I feel to unwell to even rise for meals; roughly a month ago I was placed on home health services, switched to subcutaneous immunoglobulin infusions, and put on notice that these four walls will become very close and too familiar (my last IgG numbers tanked and I promptly caught my fourth case of pneumonia in 27 months); and, in the meantime, I have been diagnosed with two additional digestive tract illnesses that will require surgery as soon as possible, but which cannot be considered until I have more strength – hence twice-weekly physical therapy as I am able. It’s a lot to deal with.

I will try to take this all in the order in which I listed it.

Mid-November 2013, I received my usual IV dose of Privigen. That Friday I came down with intractable migraine – or so I thought. As a lifelong – and now daily – migraineuse, I simply assumed this was yet par for the course. However, by the next evening, I simply could not see, I could not think, I could not bend my neck or turn my head, I could not touch my toes, I could barely remember the previous several days. Light made me scream despite the pain it caused. Clearly something was radically wrong. My husband realized how different this was from anything else I have ever experienced in our marriage and he rushed me to the emergency room. Without hesitation, I was whisked back to a room, hooked up to monitors, set up with an IV, and had a large amount of blood drawn. A chest x-ray and head CT soon followed, as did a urine sample. I do not know how much time passed in a blessedly dark and quiet – negative-pressure isolation rooms assist with more than communicable disease containment – but my husband stated that very quickly after I returned from CT, the physician returned and stated that he was nearly certain that I had either meningitis or encephalitis, and that he recommended an emergency lumbar puncture. I think I remember telling my husband this was the right course but I cannot remember for certain; I do remember he signed paperwork and I was glad despite the pain I knew was coming; someplace in the back of my head either diagnosis made sense. Again, time made no sense, but it seemed as though it was also a very short time between the lumbar puncture (which I do not remember hurting, possibly because everything else hurt so desperately) and the diagnosis of meningitis. They believed it was viral, though I did have a bacterial load. However the bacterial count was not high enough to consider bacterial meningitis – thank goodness, because we really had waited too long had it been bacterial meningitis. Were that the case I would likely have been dead already.

I was moved to a room on a medical/surgical floor next to the ICU, and given copious IV fluids and pain medication on demand (though I believe my husband said that during the first 24 hours I was given pain medication on a four hour schedule – I do not remember). A few days later I was released from the hospital, but we returned almost immediately because the headache became suddenly much worse and I could not tolerate any changes in position or even going to the restroom. Any change of pressure or movement affecting my head hurt, perhaps even worse than the original meningitis. Rush return to the ER.

This time I remember being extremely combative and refusing to cooperate with nurses and physicians. My spouse (let us just call him S from now on – that is so much easier) was able to work with me to allow the nurse to insert the IV line, but he said I was virtually incoherent and very combative with the doctor, refusing to remove the layers and layers of turban-like cloth I had wrapped around my head to shut out light and sound. Eventually, I suppose with a sedative and pain medication on board, he was able to conclude his physical exam, and was certain that this was a continuation of the meningitis, and possibly a leak of cerebrospinal fluid from the lumbar puncture several days prior. I do not think I have ever gone to a room so quickly from the emergency room.

A day and a half later, I was still in unrelieved pain, finding it difficult to communicate and still struggling with combativeness. This was Thanksgiving week in America (I know I have some followers overseas, so this translates to the last full week in November; Thanksgiving Day is that Thursday). S had much of the week off work anyway due to the holiday, and he rarely left my side. Given that what was being prescribed was ineffective for the most part, and narcotics for making me exceptionally nauseous, we wanted to come up with a different treatment possibility. As the anesthesia group felt I was to medically unstable for an attempted blood patch, the covering doctor that weekend (I think the weekend actually begin on Friday due to the holiday) came up with a unique solution: she prescribed massive doses of IV Tylenol for a 24 hour period, a wide open IV line with nutrients and very dilute Phenergan as I was so nauseous it was difficult to cope (I have great difficulty finding nausea relief, and Zofran is simply ineffective), and absolutely flat on my back bed rest, including a Foley catheter – still with the option for narcotic relief, which I refused. Evidently, IV Tylenol works by a different mechanism than oral Tylenol, and while it can take a little longer for relief, it does seem that this is an excellent alternative to narcotic regimes in certain situations. But, I still fought with irritability and anger which we worked with medically, though crying jags constantly occurred despite the pain they caused. This was one of the worst things I have ever gone through in my life. I kept insisting on being released against medical advice, but the physician and S soothed me enough to make it through each additional day. I knew I was being played, but I also knew S would not let me go home if he could help it.

By the end of the weekend I was weak but at least medically stable. I was released home and for the most part slept for two weeks. My intention had been to complete the rough draft for my dissertation no later than the end of November – and I was well on my way before I became ill – but, well recovering I found that I was unable to think clearly in my short-term memory had been affected. My immunologist and I decided mutually to attempt the Privigen one more time, and four weeks to the day from my previous infusion, I received another IV dose. Unfortunately, history repeated itself. And this time, it was Christmas week. Such luck! I was finally released, feeling very ragged, and more than a little defeated, right around New Year’s Eve.

We chose to switch medications at that point; obviously the Privigen and and my metabolic system were not getting along. We made the decision to go with IV Gamunex-C, and after a week of exhaustion I began to feel much better than I have felt in decades. By the end of the month however, I felt as though I had been hit by a tank; it was as though the medication had simply run out on me. Another two months of IV trials, and we decided as I hinted above, to go with the subcutaneous version. The very low IgG count, obviously, had a great deal to to with that. That was four weeks ago.

The past four weeks have also been a bit of a blur. I am exhausted all of the time, and find it difficult to take interest in much of anything due to the exhaustion. What had been, in December and January, “simply” short-term memory loss and difficulty reading had become good memory, but no reading, no writing, just a constant fog of exhaustion. I assume I am adjusting to the medication – at the moment, for my sanity, I feel that is what I must assume. I will be going in this week for my first blood work since starting the subcutaneous version and will know early the following week – or perhaps by the end of next week – where my IgG levels reside at this time. I suspect they are lower than usual, and this downward trend (and it has been a trend for several months) remains quite scary to me. My IgG has not once gotten above 853, and while that I suppose that is more to celebrate than the low of 164, everything below 700 feels like a loss – a big loss. I DID have one exceptional days this week, though. Thursday, I felt almost well. But I must have lifted one too many plates, or typed one character too many, or sat up for one minute too long, or moved one muscle too many in physical therapy, because since then, everything has reverted to that backward-sliding, zero-sum game I seem to be playing.

While I sit here in the bathtub dictating this – yes, dictating – I am so very grateful for Dragon Dictation – my cat purrs, and my body relaxes. It seems that bathtubs and cats remain among my few joys right now. The sun aggravates me, not because it is sunny, for I enjoy that, but because it is springtime, and I am a gardener who cannot garden and cannot tolerate sunlight due to medication.

Amongst all of this are the never ending medical bills, increased insurance premiums, a deductible – which is something, actually, we have never had, increased co-pays, and what seem like constantly increased costs of living. Meanwhile, I have been told it is improbable to impossible that I will ever return to teach in the classroom again – a talent and joy I never expected nor knew I had until a decade ago. I feel as though the rug has been pulled out from under my feet. I cannot even imagine a time when I will be able to have stamina or the reliability to teach online for a full semester again; I have not once managed to be well enough even six weeks in a row to be reliable even on a day-to-day basis. This well and truly sucks.

Or, to be far more specific, this well and truly sucks impossibly big boulders through a very narrow and bendy straw.

There have been far more illnesses and far more difficulties then I can possibly relate in this space at this time. For one, it just seems too overwhelming, and second, how am I to ever keep this all straight? I have all of the medical records, I have all of the notes, I have all of the blood test results, I have all the data. But for all of that, I cannot tell you the toll it has taken. I am glad for the extra year I have been given somehow – I was told so many times I would not live, and certainly not to my birthday last year – but, I do wonder if there will ever be a time when I can look back and say I have truly lived. It seems as though that ended so many years ago.

I smile and I effuse and I express positivity, and on that basis so many have taken me less than seriously. I know no other way to cope in real life. If I do not try – if I do not at least look like I am trying – life seems even less inviting. Perhaps it is good, then, that you cannot see my face, that you cannot be led astray by a smile and straight teeth. Perhaps it is well that I can write.

Because, perhaps that is all I can do.

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It’s been a rather extraordinary road

I’ve had a rather frustrating – and thoroughly angering – few weeks.

Last Monday I fired the rheumatologist / immunologist who has done nothing but sit on his thumbs and spin. Finagled a work-in with another group. I had actually met three docs in the group at another time and *very* much liked them – so a good feeling all the way around there. So, we hit it off and are heading toward them taking full care on the 1st of January.

Well, Friday night, I received the oddest of odd calls: it was a group asking me to rate my experience with CIGNA Home Delivery. Huh? I haven’t ordered front them in three or four years – and certainly not recently! I hung up with this survey group and called CIGNA to find out what was going on.

Ends up that the doc I had fired had gone ahead and ordered the Gamunex and it was sitting in his office! I was pretty hot about it! But there was really nothing to be done. I had come down with an ear and sinus infection, and have been rapidly feeling crappier and crappier.

So, that is what I am doing. In about two hours my infusion will begin.

I’ll fill in details another time… But I wanted you to know this much, anyway.

One in blah… blah … blah ….

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Filed under allergist, chronic illness, CIGNA / health insurance companies, CVID, deficiency, depression, ethics, gastroenterologist, hematologist, hope, IgA, IgG, IgM, immunoglobulin, immunologist, infection, knowledge, migraine, pain, relief, rheumatology, support

Here it is December – and I am coming out as The Grinch

Anger topped my charts yesterday.

When was it I was so upbeat and stated that I had been approved for everything – the works, including the Gamunex-C, etc?

October? Late September?

Well, guess what. They STILL have not ordered the medication. I am out here hanging, living on borrowed time and hopes I will not contract something else, while my rheu/imm doc’s office implodes on itself. So, I spent yesterday (Friday – I realize that by the time I post this it may not be even Saturday HERE anymore, either!) calling other practices in town to find SOMEBODY – ANYBODY – to take on my case. I have some good leads, but given that I was calling on Friday, well… most had already taken off for the weekend.

This is unconscionable.

Yet another kidney infection since I last wrote. Yet another chest infection. Yet another sinus infection. And then, with all the antibiotics, a huge, multi-organ yeast infection. I am so angry I could scream! What does it take to get anything done around this medical community!? My death?

I don’t often allow myself to think of the mortality rate of pneumonia patients with CVID. I’ve had pneumonia three times this year, though, and am not only run-down, but at an astronomically higher risk for a fourth bout than virtually anyone in the “average” population. The sinus infection will not abate, and I am back to horrendous diarrhea. My usual food intake each day consists of part of a potato, and a small bowl of frosted mini-wheats with a banana on top. And I work all day to drink, drink, drink a mixture of Sprite and Ensure Clear (The peach Ensure is nauseatingly sweet, but the blueberry pomegranate more than makes up for it!). And that is IT. I haven’t been able to manage much of anything else for how long? It’s hard to remember what it feels like to actually sink my teeth into something really and truly solid and tasty. I try very hard to not grind my teeth in frustration – any of the frustration – or the emptiness.

I’ve lost so much weight that when I reached into the closet last week for dress-up clothes I found that none of my nice blazers fit – including a gorgeous filigreed velvet one I have dearly loved. I pulled on a pair of jeans yesterday and found that they have gone from tight last year to nearly falling off this year.

baggy clothes december 2012-001

Image

Here I am yesterday just as I came home from an appointment – dissertation-related. While I am not skinny, I most certainly do not weigh the 287 to which I had once ballooned. 122 pounds down so far… and no stop to the slide yet… I would show you my face – but right now I am fairly jealously guarding who I am.

So now I will morph away from my anger and see where I end up by the time I decide to stop this for tonight.

I purchased the coat, above, at a thrift store, along with several other items; just cannot afford to replace my wardrobe in its entirety every couple months or less, so I concentrate on purchasing nice items – more on the dressy end – at local thrift stores. Everything else is… baggy or incomprehensibly large. I have $400… $500… $600… $700 suits (no, I *never* paid that!) in the front of the house, awaiting resale, not to mention the few remaining designer clothes I had modeled (they had been carefully fitted to me when I was doing private/boutique modeling at one of the big Chicago merchandisers – and since my body shape has changed dramatically, I don’t think they will ever fit properly again) that are still in the attic. In my closet I have a few items; in the large drawer in which I keep my knit and other “fold-able” clothing only a few things actually fit; and, on the shelves in the closet… well almost nothing. I have to be quite creative to be comfortable. Most everything I feel truly comfortable wearing is lined up on the shower curtain rod in the bathroom so it is easy to quickly mix and match when I get up late because I am too damn tired to move.

Working on the dissertation is difficult, but it *is* progressing. I just wish I could plan each day’s schedule in advance. I have purchased some software recently to assist getting things done – terrible pain in my joints and muscles of late – and especially helpful right now is Dragon software from nuance.com; I am speaking portions and pieces and parts of my work – as well as things like this. It was easy to pick up, and I am grateful for the ease of at least that.
You know what? Talking my dissertation almost feels like teaching.
And that, my friends, feels good. I am glad for the little things.
Love,
One of the 200 Among the 54,000 Among the 72,000,000

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Resource Information

As I receive healthcare benefits through CIGNA, their website is a go-to for me for policy statements and other data I need to fight through their red tape. Fortunately, they have been very helpful in the some half-decade during which they have covered us. May I direct you to two items?

One is this site http://www.cigna.com/individualandfamilies/health-and-well-being/hw/medical-topics/common-variable-immune-deficiency-nord807.html

The other is this .pdf file. I have highlighted the information relevant to my situation – you may find there is other information on there that could help you in your specific situation.

CIGNA_coveragepositioncriteria_Immune_Globulin_Subcutane

Note this language:

Although the exact prevalence of PID is unknown, an estimated 25,000 to 50,000 people in the US have the disease. Approximately 400 children are born with serious PID in the US each year. Although PID can act on any part of the immune system, approximately 50% of cases involve antibody deficiency.

So, according to my understanding, all PID is not equal. If 50% of PID cases involve antibody deficiency (basically the definition of CVID), then we are looking at a US population of between 12,500-25,000 total with the disease (see caveat below). This also means, if the logic follows, that, of the 400 children born with PID, roughly 50% of the cases, or roughly 200 births, involve antibody deficiency.

Caveat: Since CVID is only one of several types of PID fitting the 50% criteria, the actual number of individuals with CVID is a subset of the 50%… perhaps as few as 25% of that subset – or more. The prevalence is not well know.

SO, while we are fairly certain that half of the PID population has antibody deficiency, the amount of that deficiency class is yet smaller. The most accurate statement about it I can make is that we are of 200 births per year – and likely between 25-75% of that…

Makes us rare gems, doesn’t it?

Love,

One of less than 200 yearly births – or part of a population of 12,500 to 25,000 in the US today (might as well dispense with the One-in-54,000 stuff….)

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For Matt – and For Me, Too, I Think…

Matt –

Pardon me for a moment as I single you out and offer you some love and support for the very tough time you have been having. This is, perhaps, one of the cruelest diseases I know, not because it is necessarily fatal, not because of the cost of the treatments associated with it, but rather, because of the sheer callousness of so many of the medical professionals who see us – and dismiss us out of hand thinking we are hypochondriacs of the worst kind. We all know there is something so not right within us – but as you so clearly pointed out regarding stupid assumptions and unhealthy “diagnoses”, I am actually to the point that if one more damn person decides to state that our illness has anything to do with somatoform problems of any sort, I think I will take them by the throat and send them to the raptors, fully trussed and ready for dinner. I have zero tolerance for this junk. I just wish I didn’t always have to be my own advocate… but nobody else – even Love – can refer back over 44 years of medical records in the way in which I can. Now that there is a diagnosis, though, I am a tiger and simply will not take “no” for an answer on most anything and everything. I am almost a jerk about it.

Fired two GI docs in the past two months over it, even. I’ve found a great GI doc – and an esophageal specialist – in the same practice – where I had never thought to look. I think they will work out well.

Yes, the lack of energy is horrible. Does it physically and mentally hurt to kick yourself out of bed most mornings? Nobody has ever fully understood that, but the pain can sometimes take my breath away. That may not be a symptom everyone has, but it is the most consistent of the ones I have notices throughout  my life, because I face it every single day without fail – even when I feel reasonably well.

I have wondered about the chronic sinus infections coupled with the “allergies”. Before I ended up with the rheumatologist / immunologist I am seeing now, I was seeing one of the best allergist/immunologists in town. He couldn’t find a single verifiable actual allergy, though I was constantly in a very reactive state. Between the two of them I have come to understand that our immune systems are so wonky that they just throw into the arena reactions to anything and everything; the immune system can’t properly recognize most anything in our environments, and when it find that it’s irritated, there’s no telling what reaction we will experience.

And, as with you, things have consistently – and more recently, rather alarmingly – gotten worse. As you said, an increase in the frequency of illnesses coupled with the fact that they hit us so much harder. My rheu / imm explained it to me this way: our bodies have been fighting bogus enemies for so long that when something really comes along (and sometimes, just for the heck of it), our bodies react much less positively – and much more self-destructively – though the immune system has no idea what it is doing, frankly. I know when I finally hit that point that I stopped socializing, stopped going out in public, stopped teaching in the classroom (something I dearly, desperately love), stopped being me.

And yes. I have always always always slept more than anyone else I know or have heard about. So glad to realize now that not only am I not alone – but that there is an honest-to-goodness reason for it. A legitimate – albeit very serious – medical reason. It’s not the depression (and yes, bi-polar as well) I have fought all my life. It is actually the other way around.

Move to Oregon? Really? Nice place, nice people – but what a convenient way for that doc to evade any sort of responsibility!

I, too, started this fall with a dx of hypogammaglobulinemia. It wasn’t until I saw the rheu/imm that I had even ever heard of CVID.

I also must admit that I gave a rueful chuckle at your description of your schlepy medical file! I mentioned in my post earlier today that I am in the process of scanning all the medical records I have in-house and that I am close to filling a 16G flash drive with it all. Once I pick up all the records from August through present I will be well over that. I don’t know if I should laugh or cry.

My insurance company has, fortunately, been quite accommodating and helpful. Then again, I think I may have spoken in the past three years to every rep the have in the United States. I have their phone numberS on speed dial, alongside the names and positions of those whom have been most helpful.

I see you have been taking gammaguard – I wonder if the Gamunex will be a little less side-effect-filled.

You know, you said something I have been thinking for some time: I have been just certain that part of the reason my tummy refuses to work properly is due to “improper” gut flora, and it is quite, well, fascinating to find that it appears that this may be a common issue.

Do you find yourself doing research and advocating on behalf of what you think doctors should be doing as part of their JOBS? While I realize this is not your problem, this illustrates things well, I think: I had an emergency hysterectomy 2 1/2 years ago. I had almost never had periods ever in my life, and we had been unable to have children. I developed severe pain and heavy bleeding suddenly in mid-July, and was on the table within a little over a week (the wait time is usually 4-6 weeks or longer). While still under anesthesia, they slapped a progesterone-based hormone patch on my belly in an effort to prevent hot flashes. However, within a matter of months I was experiencing hot flashes but HOT HOT HOT FLASHES that never ended – I was so hot that last winter I *never once* wore a sweatshirt, sweater, sweat pants – nothing like that; my summer clothes received continuous demand! Well, I finally sat down, reviewed the female hormonal cycle, and realized that, not only had I lost a massive amount of estrogen when I had a serious breast reduction, and I had lost a huge amount of estrogen-producing fat stores when I lost all this weight, AND I had almost never experienced progesterone in my life (I stimulated my periods twice a year with a short and miserable run of progesterone)… so… it dawned on my that what I needed was not the dang progesterone – but ESTROGEN. Sat one of my docs down, explained it to her, and she looked at me – the chagrin obvious – and wrote me a scrip for estrogen. Needless to say, I feel far better on that note than I have, well, to be honest, in my life. Crazy to need to think these things through because you know your body better than nearly anyone else…

And one other thing.

Congratulations. It is one of those crazy miracles in the world when you and someone you love so well manage to find each other. Congratulations and best wishes. You are both winners.

Much love,

One of the rare 200 of the 54,000…

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This One’s a Doozie

Whoo-boy…

I don’t know when this particular rocky road became so boulder-filled, but I swear I hit a cliff face without a helmet going 100 late September / early October.

You see, I don’t even remember most of the last week in September.

The last time I really wrote anything (back in August) I was feeling pretty rough, and either that day or the next landed in the hospital for several days. Bowel issues and endless nausea – it’s not good when all your body wants to do is expel, expel, expel – and yet not. But things seemed reasonably ok when I was dismissed just as September came around, and I returned home to rest, then started to add to my schedule, little by little.

Managed to do some research for my dissertation on-site in a couple archives and was really optimistic things were going better and – WHAM – I started back in with the severe nausea and vomiting (I had been nauseous and occasionally vomiting the whole month – that hasn’t substantively changed in more than 11 months). This time had a different feel to it. I wasn’t starting from a good place – I was still tired from the August / September hospitalization, and I had not been able to build any reserves. Especially concerning, I was unable to consume even the regular chocolate Boost that had been sustaining me since last December (December 2011). Not to be nasty, but it was as though I had lost the ability to break down any of the contents of the Boost and was “returning” the “meal” entirely encapsulated in this vile, nasty yellow vomit. And vomit and vomit. More than a gallon a day. I stopped processing any and all oral medications; they came back as encapsulated foam and bits of pills. Even water seemed impossible.

By Sunday, September 23, I was struggling in many ways as I never had before. Then utter weakness set in and I sometimes didn’t make it to the bathroom – just mere steps away. I wanted to cry but was too dehydrated to make tears. Very frustrating feeling, actually. Very.

Managed to make it to my general practitioner’s for a shot of Phenergan in my butt Monday early morning (no, I did not drive), but never stopped vomiting – the meds didn’t even slow it down. We tried Phenergan Gel, dissolvable Zofran… lots of things… to no avail. BTW Zofran has NO effectiveness with me at all. And that is something I cannot seem to get through the thick skulls of ER docs and nurses. I would rather have a big, painful shot of phenergan in my butt than spend the time and money waiting for Zofran to “work”.

Either Monday or Tuesday (Monday, I think), I was vomiting in the toilet and absolutely could not draw a breath. I don’t actually remember passing out, but I do remember hitting my head on the outside of the pedestal sink, then waking up sometime later, again vomiting, this time at the base of the pedestal. No idea how long I was out. When Love came home I didn’t remember to tell him; he would probably have rushed me to the hospital at that point, but I was getting more and more confused and dehydrated. Terrible.

Somehow Tuesday came around, and I must admit I am terribly unclear what happened next. I’ve been sitting here talking with my husband with a notepad in hand, and this is the best sketch I can make; almost all of this is from his memory:

Evidently, the primal part of my brain realized I was in trouble because when he came home from work I was on the phone calling doctors for advice and guidance. I called our GP and the response was Go. Go NOW. You CANNOT afford to wait one more minute.

I checked the ER Wait Time (6 minutes rolling average at the time!) and scheduled the ER appointment (yes! You can do that here!). Love said that I scheduled the ER time two hours ahead so there would be an opportunity for him to eat dinner (how funny! And how sweet, I think, somehow; I was – and am – more concerned for his welfare than mine) but he really pushed me out the door – I crashed and crashed and crashed. He managed to wheel me into the ER (how did he get me out of the car?), sign me in, and go park the car, but at some point just after he returned to the ER waiting area I tried to get up and lie down full-length on the floor. He diverted me, and I ended up on a bench (?), vomiting. (I think it may have been two of those ER bolted-together seats – I don’t know). He says they triaged pretty quickly, and dumped me into a room quite quickly after *that*; evidently I was passing out as I sat in triage. I remember being terribly, terribly cold – and that I was so dry and weak that I couldn’t vomit anymore – the vomit was like a white, sticky web and just dribbled out my mouth, making me choke and panic. I remember him saying “Calm down. Breathe in through your nose. Stop fighting the vomit. Let it come. Let it come. Calm down. Breathe in through your nose.” Over and over again. I think he was scared silly, frankly.

Fortunately – how did THIS happen two ER visits in a row? – they managed a peripheral line on the first try. Love said it was pretty amazing – I vaguely remember his “WOW!” And then meds. I have no idea what they gave me, but it seemed to help ease pain and nausea. Quick admit, though – I was in a room within three hours. Clearly critically ill.

Love says the ER doc was concerned about the accumulated radiation of the past several years. Random thing. And yes, there is room for concern. Just an odd time and thing to say in the midst of a crisis.

In room and intense nursing care. I do know they called the crisis team several times while I was there, but I couldn’t tell you when during the week. But, frankly, I was ready. If I went, I went. The only thing I worried about was that Love would be alone and I feared for him. So terrible.

Well, Sunday evening one of the nurses came in with a floor-nurse phone and handed it to me; the doctor was on it and wanted to know if I wanted to come home. I said something along the lines that I would like to but didn’t know if had the energy to do so. Next thing I knew, I was being dismissed. Stunned doesn’t cover it – I still couldn’t keep down solids or liquids!!!

Spent the rest of the week vomiting violently, and Saturday we went to one of the minor med locations in two. I was so dehydrated that my bp was 73 / 39. Once again rushed to the ER.

Terrible, horrible, miserable time starting an IV (8 big, bruised attempts)… and things just deteriorated from there in my nursing and general medical care. Didn’t matter I hadn’t eaten or kept down anything since the middle of September – they made their own assumptions, and my care suffered. And example? I started complaining of serious pain at the IV site – but it wasn’t until I was dismissed 37 hours later that they removed the offending issue – and by the next afternoon I had developed a bad site infection. Anyway, one thing led to another – and how – and I ended up being booted out of the hospital – still unable to eat or drink. (At that point they had also convinced themselves I was forcing myself to vomit! I am sorry, but when you gag and dry heave for HOURS on end, and then, when the puke comes, you vomit incessantly for hours, that is not a joy ride… pardon me, but they are asses – and I feel fortunate that I have the ability to choose a different hospital provider within my city).

I have been home since then, except for the endless rounds of doc appointments. At one point I lost 20 pounds in 45 days – and had been trying desperately the whole time to at least hold steady (I’ve lost something like 53 pounds since this time last year. Hah. Holding steady on WHAT planet?). No, I am not emaciated – and that damned “you look pretty good, so I don’t think we need to concern ourselves with IV nutrition or anything like that yet” crap is just getting to me, getting to me, getting to me. Have been able to get down a little more than “usual” this week – but everything is punctuated by nausea – and some vomiting. I worry that I am developing some sort of illness-related anorexia: I am so completely and utterly frightened and scared of the idea of vomiting even One More Time that I would rather not eat than risk doing that. There have been days when a glass or two of juice / tea have been all I can get down – and go through days and days on end of being unable to eat. Better luck the past week, and there have been three days when I have been able to get down “breakfast, lunch and dinner” if only in the most rudimentary fashion (several bites here, there, and another). It’s a rare thing to actually be hungry – but that’s the worst. I cannot manage my meds – and certainly  not in the proper dosages. I swallow what I can of he enteric-coated ones – and everything else is crushed.

Been calling the immunologist’s office for weeks trying to figure out where we are on actually GETTING STARTED on the IVIg – and can’t get the person in charge of my case to even call me back. I have another kidney infection, have had another bout of pneumonia AND I feel lousy today. Frankly, they are going to regret not calling me back, because I am going to devote tomorrow to getting answers and being the boil on the butt of a cavalry officer. I have been approved for the IVIg. I have been approved for Gamunex. At this point the hitch is, evidently, that the person in charge of all the approvals and ordering, etc., has been looking for the “most cost-effective way of doing this.” As I told the office today, I couldn’t care less about cost-effectiveness at the moment; I need help – and NOW. I just cannot afford another major infection. With a third bout of pneumonia under my belt and the 11th kidney infection of the year? No. Stop futzing around and work for cost-effectiveness next round. We have other priorities right now.

The dissertation is coming along, though, and I should finish my solid rough draft mid-month next month.

At least something is coming along.

A more cheerful post coming in a few… but I had to get this out. I am sure I am not alone in this treatment or these attitudes. Why does most of the medical community think they can romp all over us, assume we are mentally defective drama queens who have some level of Munchhausen syndrome (and act callously accordingly), give an inappropriately-low level of treatment because we “look just fine” (trust me – when I look like crap, I will, quite literally, be on death’s door…), and get so annoyed with us that they FIRE us from their practices? This should never be acceptable – and especially so with people with a clearly-documented illness – set of illnesses. The “medical records” rolling bag I schlep to each and every appointment is full to overflowing – and I am currently working (in between dissertation work) to scan every single document onto my hard drive – and onto a 16G flash drive. The time is not far away that I will need a flash drive double that size. But for now? Well, we do what needs doing.

Thank you for your support – and for your selflessness in sharing your own stories. I really don’t know what I would do without knowing you are there.

By the way. I was reading CIGNA’s white paper on CVID and found that the type of CVID I have is found in only roughly 200 live births each year. Will need to find that paper and repost here. Astonishing, that.

Much love,

One of the yearly 200 of the 54,000. I’m a rare gem. 😉

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Filed under chronic illness, CVID, deficiency, depression, diagnosis, diet, disease, fear, Gastrointestinal, GI, hope, hypochondria, IgA, IgG, immunoglobulin, immunologist, infection, math, pain, relief, rheumatologist, statistics

Weary wind doth blow

I tried posting an update a few weeks ago, in between hospitalizations, but I just couldn’t manage it. I’ve been too sick. I hit the backspace key on two separate occasions, wiping out everything. Will be doing all but this post in Word first from now on.

However, no more testing needed; we’re moving forward with insurance approval for Gamunex. Finally.

Will write more, but I will be doing it offline, so it may take me until tomorrow to get something here. I’m pretty tired – and tire even more easily – since this last week in the hospital. I cannot imagine feeling decent, though the doc pretty well promises a health I have never had if I am able to tolerate the Gamunex.

What a thing this is.

Love,

A very tired minority

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