what a difference a day makes

yesterday was the anniversary of the date i first went into the hospital, three years ago. i never knew a day could change my life so radically, but then again, as the old clichee goes, what a difference a day makes.

my doctor had called me back late that afternoon with my blood test results. i think i may be the poor guy’s medical bete noir; i’ve thrown down shingles at him as well as other interesting medical predicaments. you know, he said to me, your reds and whites look fine to me. but its weird — something must be wrong with the test — we can’t get a reading on your platelets. he had already seen how i was black and blue all over (crack whore, the description my beloved pal jaxx had given me a few days later, was how i truly looked); when i told him about today’s joys, a never-ending nosebleed and the fact that i was, er, let’s just say hemorraghing, he told me that perhaps i ought to hit the ER.

my best bud murph ran home from work, stayed with my kids, and BS and i hit the ER. and waited. and waited. and waited. two men who were also waiting are forever pinned in my memory: one, walking around with his urine sample and complaining bitterly of the pain he was in, and another, whose stitches on his knee had opened and who was raining blood down on the floor two seats down from me.  i felt this eerie calm, like i was sleepwalking, as i marvelled at the men. jesus, i said to BS, one guy has a urinary tract infection and is screaming like he’s about to die. i’d expect that from a woman in labor, but if every woman with a UTI screamed like that — and it can be painful, i know — the world would be wailing. and i just watched the blood drip…drip…drip onto the floor from the other man’s knee. later, i would watch a cleaner come and mop it up. and then mop some more elsewhere.


anyway, the ER nurse, when i finally saw her after giving blood, proceeded to laugh at me as i recounted how my previous day had gone down: i had dropped one child off at school, gotten on the bus and gone downtown, walked a half mile to my office, worked, met friends about a half mile away for lunch, walked back, worked more, walked to get the metro, took it to hellboy’s preschool, picked him up, picked up the car, drove over to pick up BC and BS at BC’s school, went home.

did you not notice you were tired? she asked.

i replied, i’m a mother of two young children. i’m always tired.

apparently, not tired enough to notice that i had almost no platelets left in my system. normal levels of platelets are 150k – 400k, for you trivia buffs. below about 30k, they want you in the hospital. below 10k, you’re in danger of your brain bleeding.

when i hit the hospital’s ER, i had 2k.

(yeah, i’m an overachiever.)

no one knew why my platelets had disappeared, but they threw some platelets in me to try to get me stabilized. i ate those suckers up like wheaties; the benefit didn’t last long. idiopathic thrombocytopenic purpura was the term thrown at me. which, in english, means your platelets have fallen and they can’t get up. one theory was that my son, who had been ill, gave me some regular old, garden variety childhood virus that i had never had (and which makes grownups quite a bit sicker, apparently.) so they gave me some antivirals.

they also pounded me with steroids. after a few days, my platelets went up to a respectable 36k, so they let me go home with the stipulation that i hit the hematologist the very next day.

and hit it i did.

when i visited the hematologist, my platelets were back down to 4k. whee! this gave me a free pass for a bone marrow scan. i hope none of you, NONE OF YOU, ever have to get this. i wouldn’t wish it on my worst enemy. you are awake. there’s a tiny bit of local, but you feel the scraping of the doctor inside a piece of your hip bone. the pain is excruciating, like childbirth, only with childbirth, you are pretty sure you’ll have a happy outcome. with a bone marrow look-see, you’re praying for the best possible outcome, an outcome that doesn’t involve a horrible illness that will shorten your days. the technician helping my doctor gave me a tiny little bear to hold. i was grateful for the kindness, but i was lacking the will to be creative that day. i named him platey. he rides in my car to this very day.

and while they scraped around inside me, i talked. i talked about jamaica. i talked about the sunblue waters in which i once swam, in which i once snorkeled and saw the most beautiful, colorgleaming fish, fish i never think i’ll see outside of an aquarium. i tried so very, very hard to be anywhere but in that little room. i wanted to think about a place where i had been so very, very happy. and i didn’t want to think about my children, as i couldn’t bear to make any mental leaps about my children and sad, sad, news that hung over me like a shroud.

when it was over, i had to wait for my doctor to get it all together. he was going to look under the microscope himself. the longest half hour of my entire life. i sat there and planned my funeral. who would be at my funeral? where would i be buried? what songs would they play? who would be looking after my children? how would my husband cope? would my parents ever recover from this or would this kill them, too? i tried so very, very hard not to cry. but i hurt, inside and out.

soon, BS joined me in my personal circle of hell. and the doctor broke out his little slide and started to look. come here, he said to BS. i want to show you something under the microscope. surely my hematologist wasn’t going to gleefully show my husband my death sentence, swimming around on a little slide. surely it would be a sick and cruel thing to do. i sat up as straight as i could.

see, these are platelets,” the doctor showed BS. “tons and tons of platelets.  she’s making them, which is a great thing. your wife has the hardest working platelets in show business. something must be killing them on their way to the spleen or at the spleen.” in other words, i was having some sort of crazy autoimmune episode where my body marked my platelets as invaders and shot them down. giving me more platelets wasn’t going to do anything but give my body more opportunity to shoot down more little platelets.

the good news: not cancer.

the bad news: back into the hospital with lots and lots of steroids. BTD (aka my brothuh the doctor, for those of you new to the place) was totally in the act now, talking with the hematologist, telling him about when he had ITP and then was discovered to have CVID. the pieces of the puzzle were coming together, although my hematologist, unaware at the time of any genetic link for CVID (or any link between ITP and CVID for that matter), was absolutely gobsmacked. when this is all through, you need to see my friend in bethesda. he needs to take a look at you and help you figure this out. this is amazing, this is. (and i do now see his friend in bethesda. every 6 months.)  in the meantime, have you tried giving her IVig? my brother asked.

IViG was very difficult to come by then; i had heard that they were saving it and sending it out to the troops in Iraq, though i’m not sure how accurate that is. but i knew my brother couldn’t get any for me at his hospital. my hematologist probably gave away his first born child for me; he somehow finagled three treatments for me from other hospitals. too bad for me, no one knew i would have a hideous reaction to it my first time. once i premedicated with benadryl, though, things were looking up.

after nearly two weeks in and out and in the hospital again, i was set free. my count was improving, though i had to stay on massive doses of prednisone for months afterwards, which made me a little teeny eentsy weentsy bit psycho..heheheheh. (and waaaaay fat. but better to be fat than be dead, i always say.) but over time, i improved and improved. i was so grateful for all the support my family and i received from friends and coworkers. my boss — hell, the entire organization — could not have been more wonderful in my absence.

but that day completely changed the course of my entire mental state, my entire perspective on my life, my family, my work, my very existence. today, i am relatively healthy — my platelets were clocking in at 215 when they were checked in january — but i know now that every day being well, being on my feet, being here — is a day that i wouldn’t trade for anything.

21 thoughts on “what a difference a day makes

  1. As you are no doubt aware, at synagogue when we complete the reading of one of the five books, the congregation recites “Hazak, Kazak, v’Nithazek (Be strong, be strong and together we will be strengthened). I must say that after reading your words here that I feel it appropriate to say this to you. You are clearly one of the strongest people I know and I hope for your continued strength and I totally feel strengthened for knowing you.

    Sorry for being mushy.

  2. Wow. Yes, tons of strength indeed! When you say this is genetic, are there other past family members who had it? Will you both have to keep an out for your kids? I’d never heard of this condition until I ‘met’ you. Thank you for sharing your stories.

  3. Although, our diagnosis and tests were very different I had all of the Scan Family, Cat, Pet, Fusion, etc. Don’t know why all of the animal references, , your thoughts, worries about families, funerals are eerily similar to mine and it was 3 years ago also. The perspective on life changes forever, and your resolve is strengthen every day. Keep it up and thank you for sharing. You will inspire others with your writing to continue their journeys despite their own medical conditions.

    I never thought of you as mushy ever!

  4. tp – not a lot is known about CVID — the theory is that you might have the genes, but they don’t know what flips the proverbial switch for some to end up with CVID and some not to. my concern is always for my kids and my brothers’ kids. someone there must have the genes, but for now, we don’t know. it was a huge elephant in the room when my DD was constantly sick with upper respiratory infections — so finally, the pulmonologist had her immunoglobulins tested. she was perfect. i cried my eyes out. but that perfection may not be a forever thing. we just don’t know.

    researchers have only been aware of immunoglobulin issues for about 50 years, so we have no idea whether people in our family had this or not.

    pianoman, i don’t know you personally, but i sincerely wish you good health. i’m hoping that whatever you’ve battled, you’ve beaten 🙂

  5. This is quite a story and quite a medical ordeal for you. At certain moments I thought I might faint just reading what you went through. I’m glad to hear you are three years away from this and doing better.

  6. Sher- you are always in my thoughts and glad you made it to this 3rd anniversary. 🙂 I guess another appropriate prayer would be the schechiyanu – for sustaining us and getting us to this place we are now.

  7. Hello, My name is Mary, I have been researching CVID as well as a few other allergy/immunology conditions) for a project for school. I am a junior in the Industrial Design program at The Ohio State University and this quarter our project is on medical products (pertaining to chronic conditions). I am particularly interested in medical products because I have a chronic condition myself (which is autoimmune). My research currently is on the education of a condition after diagnosis as well as patient needs, wants and requirements. I would love to ask you questions if you would be willing to help out some college students!! If you are interested please email me at greenwood.40@osu.edu Thank you for your time!

  8. I have ITP so I found your story very relevant. It was awesome to read it with the wit you infused. You’re a super story teller! Thanks for cheering me up. When I come off the “dred Pred”, my platelets just tank again. I hope for you, it “resets your clock” and you don’t get this life-long annoyance!! Like you, I view each day as a blessing because, like you, I was sure the “end was near” while I waited for the results of my bone marrow biopsy. When I found out I could die of old age before I died from ITP I was relieved. But walking across an icy (slipper)parking lot without your bike helmet can theoretically do you in if you have ITP, so it’s a constant thorn in your side. Best wishes in your journey down this “dirty road”!

  9. adelle,

    thank you so much for the kind words! believe me when i tell you i know the “joys” of prednisone. but i continue to remind myself: it’s better to be (fill in the blank with the choice you prefer) heavy, nutty, etc… than it is to be dead, lol.

    also, have you had your immunoglobulins checked? the IViG i think really helped a lot. maybe it would help you?

    i wish you good health. please stay well and let me know how you’re doing!


  10. You are my one and only, all time favorite, never to be replaced Crack Whore Extraordinaire. Your wit and grace — let alone your strength — make me smile whenever I think of you. You have a wicked sense of humor, you make a mean pan of brownies, and you have a heart bigger than Dolly’s boobies. You are one of the best mom’s I know and one of the best friends I have. Happy Anniversary, Girlfriend!

  11. Hi!
    Thank you for sharing your story with ITP.
    I am a mother of 4, married and living in Norway. Got the ITP diagnosis in May 1994 (or -03, not sure here all of the sudden) and have had my spleen removed, which was a big mistake for me to do, but it is done. I do live fully without the spleen, but I also do regret having it taken out. I didn`t know anything back then, and since my hematologist suggested it and my platelets were waaaay below 10, I said yes and went along with it.

    My counts were fine around 80 – 110 for years, but now, as I am on the treshold to having bariatric surgery, they all of the sudden drop and are now at apx 36, whis is the lowest I`ve had them since I was pregnant with my youngest child in 1998, and 47 the day she was born. I had a Cesarean section, and everything went just fine.

    One of the bad things about my platelets are the fact that they are big and sticky!
    Not sure why they are this low now, if it is my overweight, the fact that I`ve been taking NSAIDS for my joint pains, or just because I worry? Don`t have a clue! Will see a new hemotologist in a few weeks, and I must admit that I am kinda scared now, hoping this is just a flare up and that I will go back into remission soon.

    Good luck with your ITP and thank you again for sharing your story! It means a lot to us out here 🙂

    Hugs from a fellow ITP`er Kari-Ann

  12. kari-ann,

    thanks for your kind words! my platelet low was under 10 (it was 2!), so i understand! good luck with your surgery — i recently had my gallbladder out and did well, but that may be a far less complicated surgical endeavor than what you are undertaking.

    wishing you good health!!!

  13. CVID is incredibly mysterious – like most things in the universe that we observe and fail to understand (namely, EVERYTHING). I myself am a fellow sufferer, also receiving the dual labels of ITP and CVID. I’ve dipped below 1k myself and was very happy to live so that I could tell the tale afterwards. I have felt somewhat uprooted and disoriented as a result of my diagnosis. However, Fyodor Dostoevsky tells us that MAN is a wretched creature because he is prepared to adjust himself to all things. And I guess I have obeyed this law as I have grown accustomed to letting the nurses artificially support my life from month to month as I vampirically suck up the CVID that keeps me alive… Some people wear prosthetic limbs… But people like ourselves are dependent upon a different kind of prosthetic, a much more complicated and expensive one that flows through us. I just THANK GOD it’s there !!! Just a random question: Were your levels of stress preceding the onset of CVID HIGHER than your usual levels of stress? I underwent some very severe strain – what was easily the most difficult period of my life, full of death, drama, a disintegrating family, financial woes, etc. – prior to the onset of my CVID. Was there any kind of psychological stress that you think might have triggered your condition? (I sometimes wonder this about myself… But it’s speculation and leads…. well – nowhere!)

  14. Yes, my levels of stress were wickedly high. I was rebuilding my organization’s entire web presence, a huge undertaking costing our nonprofit a boatload of $$. I also was a mom with two young kids at the time. I think that some of us have the genetic goods to have CVID and that some sort of stress triggers it. But that’s just my theory; I am not a doctor. Good health to you!

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