A Coagulating MMP

Tomorrow, June 6, is my twentieth anniversary. On this day in 1991, I had a doctor’s appointment. I had been bleeding and bruising a lot over the past year, so as soon as school let out, my mom dragged me down to the pediatrician’s for a thorough checkup. Late that afternoon I was playing in the living room when the phone rang. It was bad news, I knew it. When my mom got off the phone she told me to pack a bag because we were going to the hospital.

Turns out that all the bleeding and bruising was caused by an autoimmune disorder called Immune Thrombocytopenic Purpura (ITP). Simply put, it means that my immune system stopped recognizing my platelets as part of my body and started attacking them. My platelet count twenty years ago was 2000 per microlitre. Normal, as the Wiki page will tell you, is 150,000 to 450,000. I had a tube in my arm for a week. That week also marks the last time that anyone was able to get a good vein in my arm. They’ve retreated and now all blood tests have to be done from my hands. This is why no one is allowed to touch the backs of my hands.

When I got out of the hospital, they gave me steroids. The doctor told me, “You may gain weight and it may stunt your growth.” May should not have been a part of that sentence as both certainly happened. Please not also there was no mention of roid rage which I had a bad case of and ruined my social chances for middle school. We shall not speak of the roid rage again.

My count just wouldn’t stay up, so eventually I was sent up to Duke University for a specialist. At first we thought I was going to get a bone marrow test. For some reason, in the early 1990s, Readers Digest ran a whole bunch of medical stories in which people had bone marrow tests and I read them all. I knew what that meant and I wanted no part of it. Fortunately they decided to put me on a FDA study. This meant that I had to have another round of the IVIG, which didn’t work, so they could establish that it didn’t work. :rolleyes: As was expected, it didn’t work. Then I got put on a drug that did work: AntiD. One of the main reasons I got put into this study is that I’m severely needlephobic and AntiD only takes two minutes to run in as opposed to four hours for the IVIG.

In 1996, a paper was published in a medical journal. I found that article a few years ago. In it, the effects of AntiD on a small group of ITP patients is discussed. I was the 16-year-old mentioned in that article. My doctor told me I had the best reaction out of anyone in the study. Sometime in the late 1990s, AntiD was approved as a treatment for ITP patients. You’re welcome.

The intervals between my trips to Duke got longer and longer. When I was on IVIG, I had to go up there every week. When I got AntiD it became once a month. Then once every couple of months. Then four times a year. I had to get weekly blood tests to monitor my count and these results were duly sent to Duke. When I went to college in 1998, I got a dose of AntiD before I shipped off to Pirateville. I got weekly blood tests and they stayed remarkably high. When I came home for summer vacation, my mom and I went back to Duke for a check. That was the last trip as I was declared officially In Remission. And there I’ve stayed for twelve years.

It’ll probably come back eventually. I understand that every woman has a Big Change scheduled in their late middle age and since the first Big Womanly Change triggered my immune system to go nuts, this probably will too. I’m okay with that. I know what to expect now.

In closing, I would like to point out that AntiD is made from human plasma. I can’t donate plasma because of the ITP, but if your blood is good, please consider donating. The life you save may be my own.

Glad for the AntiD that has kept you with us, Spaz.

I’m off to bed now… Happy almost Monday, all!

Hugs.

GT

Wow Spaz.

Can someone reassure me that I’m not a total freak? I see all these threads and posts about terrible things happening and I never respond because the only things I can think to say aren’t good enough. I sympathize but I can’t put in good words.

I figure it’s related to my depression - I don’t feel things very much (the last time I cried for someone was when my first pet died. I tear up and cry for sappy stuff or stress.) I don’t get emotional about my situations either. I apparently do better in person, but that’s easier.

So if I haven’t said anything, it’s not because I don’t sympathize, it’s just that I’m a dork.

Auto immune diseases are fun, aren’t they Spaz.(I speak from experience).
15 hours till vacation.

First quarter of college Mk2 done and in the books. Looks like I’m starting to shake whatever decided to try me for lunch, on second bottle of Delsym, throat no longer feels like it was used to grind glass.

Vorlon Jr spent the weekend at the shore at a fellow scouts house, ran into a patch of trouble out on the water resulting in them being stuck out there for 3 hours. I’m now marinateing him in aloe. He glows in the IR range.

Mrs. Vorlon is in the hands of the Medical Mafia again, this time to ween her off the 17 pills in the AM/22 pills in the PM schedule her Dr. Feelgood had her on. She went in Friday, and nothing has been done yet–got to love weekends.

So I had a quiet weekend.

Oh, before I forget, all four classes were A’s. Not bad for a 48 year old geezer.

Good Mornin’ Y’all! Up and caffienatin’ YAWN ‘Tis 75 Amurrkin out with a predicted high of 99. Rain has been happenin’ all around but not at da cave. :dubious:

Spaz glad the AntiD worked for ya. This is indeed a milestone worth celebratin’. Here’s hopin’ you stay in remission forever. I gather you get tested from time to time to make sure?

ShinyCat, it’s always hard to know what to say in a difficult situation. You are not alone. A simple “you’re in my thoughts” means a lot.

Alien yay on the A’s! Here’s hopin’ the wife gets fixed up soon and that Alien, Jr. is feelin’ better.

Now I go in search of more caffiene and some brekkie for rumbly tummy. After which, alas, irk purtification must commence. On the plus side, I’m gettin’ taken to dindin at the good Eyetalian place tonight.

Happy Monday Y’all!

Blurf.

Spaz, sometime I should dazzle you with tales of VunderKind’s 2, count 'em, 2 bouts of Kawasaki’s Syndrome. Totally different disease and mechanism, but many similarities to your story. As far as autoimmune diseases go, y’all know already about life with VunderWife’s lupus (yes, it really is).

I got more meetings today than I have hours to handle them all. Yu-uck.

So are the rest of us, hon. Dorkness is a requirement to be a Mumper, so you’re in good company.

:gives Shiney a noogie:

Spaz- so glad you found a treatment that worked. Autoimmune disorders are a bitch. :frowning: This I know.

I’m on a board at our local hospital that oversees and approves research studies. We examine the numbers in population sizes. It’s nice to hear about a study from the other side- an individual that was helped because that study existed.

And yes, we are all dorks. :slight_smile:

Interesting story, Spazcat and glad you are doing well now. Since you have so much trouble with needles, have you talked to your doctor about having a portacath placed?

8 and ahalf hours till vacation.

Horay, alien!!!

ShinyCat, I’m the same way.

Spaz, you have plenty to be celebrating since you’re still here to post about it!

I am having a quiet day today at work and the next two days will be quieter still as I’m going to work in my old building where I gasp won’t have any intertoobz! How scandalous is that?

Oh well, I suppose that means I have to actually do some work then.

I have SO much crap to do today. I hope to og I can get my ID today (which also involves going to get a numadent at the SSA) plus got to to to the library and print out my boarding pass, get an umbrella, finish laundry, pack… I hope my sister appriciates the fact I want to come see her graduate! :stuck_out_tongue:

Spaz Glad you came thru all right, and thank you for sharing your story.

Blurf.

I think I got about two hours of good sleep last night. The rest of the night was spent sitting up with reflux, or coughing, or listening to the dogs, or my husband.

Blurf!

Glad to hear you’re doing well, SpazCat. Hopefully you’ll be able to keep in remission for quite a few more years. I’m usually a donator of blood/platelets, but the past couple of years have been filled with not enough time between tattoos to be eligible to donate. As soon as I’m out of the “one year afterward” window, I’ll more than likely start donating again.

Good morning Mumpers! I am in my first week of unemployment for a while-- that contract-based job I moved for about a year ago decided not to renew my contract, so now I’m on the job hunt. :rolleyes: It sucks, but it gives me a chance to move on to better things and get a job that fits better with my career expectations, as the last job was a “this job market stinks and this is the first good offer I have gotten” position. I am just hoping I find something fast, as I hate being unemployed and I worry about money constantly when I’m in situations like this.

I’m supposed to be getting blood tests every six months, but I’m still not used to this whole medical insurance thing that I have so I haven’t in a long time. I can kind of tell my count by how I feel, though. It got to the point that the doctors at Duke would ask me how I felt before they gave me my blood count results. Run down and tired all the time = low platelets. Normal = good platelets.

I haven’t had any IVs since 1998. Portacaths freak me out more than regular needles. I’d probably have to pull it out just to get it away from me.

Thanks to everyone who donates blood, plasma, and platelets. It is appreciated. Culinary Boy is going to donate plasma today, too. He’s been doing that lately for the few extra bucks, but when I told him about the AntiD he quit grumbling about how run down he felt afterwards. Yeah, let me tell you about some feeling run down, bubs. :wink:

Thank you!

I’ve donated blood, but not plasma. They’re not set up for plasma at the blood drives where I generally donate. I think your post has inspired me to just go to the blood center, already! I’ve got a bit of time to get in before the next tattoo…

What she said (except for the “almost”… as it is actually Monday at this point!).

Do they no longer do splenectomies as treatment for ITP? We knew a woman who had a high risk pregnancy because she was diagnosed with that - then about 2 months after the baby was born they went ahead and removed her spleen, which was (I gather) considered a cure for her.

Morning!

I donated blood when I lived at home in the UK but they won’t let me over here in the US as I lived in the UK during the mad cow years.

mr ems does however donate

It is Monday and that is about it