As an adult, my platelets began to drop down to 30k, so in 1999 I had my spleen removed, and I was able to keep my counts around 50k-70k again.
If you read the first word in ITP is "Idiopathic" meaning that there is no known reason why my body does this, it just does. So when you see what "treatments" I do, you will notice that they address the symptoms, not the actual disease.
Some of you may remember I dealt with this in 2007, missing almost 4 months of work. During that time my platelet count would drop down to 10k and steroids and other treatments did not work. I went through a round of chemotherapy and HIGH dose of intravenous steroids. For whatever reason that "reset" my body and I was pretty healthy up until last December.
I started to notice unusual (for me) bruising and petechia (litte red dots that are small blood "explosions" just under the skin) all over my body. Anyone who has seen my Facebook page has seen a picture of me with blood blisters in my mouth and on my tongue. That was not from licking a gravel road- I woke up one morning and my mouth and nose were filled with blood. BTW I took that day off and then went to work the next day to finish out the month of December...
When I came back to work on the first day back in January, I had a bit of bronchitis and some more red spots. I decided that I should definitely go to the doc and deal with the bronchitis and ITP. My platelet count was 5k- a number so low and so critical that I was immediately hospitalized.
Let me out this number in perspective for you. I had 5k platelets, you probably have at least 150k to 400k. As blood is pumped through our bodies, little "leaks" occur. This is normal, and fine when you have 150,000- 400,000 platelets circulating to stop the blood leaks. When you have only 5,000, normal "leaks" can turn into full blown hemmorages, that can NOT be operated on. Worse, if it's in the brain... or, a simple "fender bender" car crash can turn into a critical trip to the ER.
I spent 5 days in the hospital, receiving platelet infusions and steroids. Unfortunately my body doesn't respond to steroids, and worse yet, it kills ANY platelet in my system. Finally, I was given a round of Intravenous Immunoglobulin (IvIG) and that brought my platelets to above 50k. The doctor said "There are some new treatments that are specific to your case. One is a pill you take everyday. The other is a shot you will receive every week in my office. I would like to start you on the pill as soon as possible."
As these two new treatments are just out of clinical trial, I had to apply to the pharmaceutical company and my insurance for approval. I was approved, and spent February and March taking a daily pill, Promacta.
It didn't work.
So, on to the weekly shot.
Same hoops- apply; Wait, Approval, treatment...
It didn't work.
Next step, a form of chemotherapy treatment that really isn't chemotherapy... 4 weeks in the "chemo lounge"...
It didn't work.a
At this point I ran out of sick time, and the school district I work for will only extend my unpaid leave for 100 days so I am dangerously close to losing my job, which is a big problem because...
HEALTH INSURANCE!
While all of this was going on, my platelet counts kept dropping, and every other week I had to go to the hospital for IvIG. After my 6th overnight stay, my insurance, doc and hospital worked out a plan for me to receive the treatment in the ACU. This means I go to a nice recliner in the morning with my laptop and reading material and try to fight off the Benadryl side effects. (BTW Benadryl wins every time, hands down!) The treatment is 8 hours long, and must be given twice, on consecutive days. Sometimes after treatment I feel fine, but most of the time I am flat on my back sick for two - three days immediately afterwards. I say that when I feel great I am probably sickest, and when I feel horrible I am healthiest.
One last point to note about the IvIG treatment is it's cost; $30,000 a round. A big part of this is because it involves blood product from 1,000 donors. A big thanks to you and ALL the folks who donate blood. I literally would not be alive without you.
I said that was the last point, but I was wrong; This is: No one knows why IvIG works. It just does. And IvIG is used to treat a bunch of other stuff too.
Between rounds of treatment and being sick I have been able to do a few things here and there. My physical activity is VERY limited, but i work closely with my doc to make sure that I am healthy to do the few things I get to do.
So what's next? I am starting a course of Oral Chemotherapy. This treatment is expected to last 4 months. While the treatment is much lower than that of a breast cancer patient, I may still experience the side effects- hair loss, nausea, etc. Will it work? Only time will tell.
I realize that this isn't the best way to end an update, e-mail, or blog, but it is basically where I am today. I hope everyone at least has an idea of what is going on with me. I realize that most you are well-mannered and courteous, meaning you feel that by asking me what is going on you are "prying" but I assure you that is not the case. Of course, if you asked and I gave you this whole spiel, you might miss something important, like your kids birthday or your state mandated break and then we would ALL be in a world of hurt. I really hope you read this tome in your spare time or in line at Costco. At least someplace to help you pass the time.
Again, thank you for all your support, well-wishes and time. It really means a lot to me.
Cheers!
Jen
