“Looks like a we could be looking at a couple of things. We either have a case of ITP, Immune Thrombocytopenic Purpura, which we can treat and deal with…”
Riiiiight. Okay…
“…or, due to your low white blood cell count and the fact that it has dropped since yesterday, possibly a case of Acute Leukemia…”
Whhhhhhaaaaaaat? Umm. ($#!t.) Leukemia. Huh?! Leukemia. Okay. Huh? Leukemia? Really? Woah.
“…which can be treated and dealt with as well. I’m seeing some abnormal looking cells on the slide that I just don’t like–at all–so I’d really like to do a bone marrow biopsy to see what we’re dealing with here.”
Terror. Feelings of dread/disbelief/shock followed the afore mentioned conversation with my hematologist after being admitted to the hospital in a whirlwind the day before. Out of nowhere, I had been experiencing some really odd bruising/bleeding, so I went to my PCP’s office and had some blood work done. Apparently, something really was wrong.
When the doctor left the room, my mother and I immediately began scouring the internet; Googling every piece of information that we could find about blood disorders, autoimmune disorders, hematology, Leukemia. You name it, we read it.
Most of the information we came across at that time was discouraging–either too technical/medical for us to really comprehend at that point, or the type of data that will leave you questioning every bodily function over your lifetime and, subsequently, convincing yourself that you are on a crash course to meet your maker sooner than you thought.
(You know what I’m talking about. Ever use the symptom checker tool on WebMD for an earache? You’ll walk away wondering if there’s a possibility that the case of Swimmer’s Ear you had back during the summer of 7th grade could have actually been Thyroid Cancer the whole time…)
It wasn’t until I found out that my good friend’s mother had been dealing with some abnormal blood work/results for around a year and had gone through the bone marrow biopsy ordeal (which was negative for Leukemia, thank goodness) and countless other tests with no real diagnosis, that I felt any better about the situation. I can’t even tell you how much it helped to know that someone else I actually knew and loved had been dealing with a similar situation and was leading a normal, active, fabulous life.
This is why I’m creating this blog. I plan on journaling my experience from the beginning in hopes of easing the minds of other patients who find themselves in similar situations. I want to create a resource for anyone affected by this blood disorder, creating awareness and providing reassurance for anyone who is half as freaked out/confused by this condition as my loved ones and I were from the onset.
I will try my best to discern when to omit the gory details, but, let’s be honest, we are talking about blood here.
Click here and scroll to the bottom to start at the beginning…
Every time I receive an e-mail notification that someone has posted a comment on an entry, it makes my day! Comments and feedback are always appreciated, so please don’t hesitate to tell me what you think. :)
Hi! I just wanted to say thanks for posting this blog. I was diagnosed with ITP a few months ago, and it’s very helpful to read about someone else going through similar things. I don’t know anyone else my age who has ITP, so reading about your experience has been very informative. And, your writing is so entertaining even when you’ve had a bad day; it’s very uplifting. Thanks again!
Hi Jessica! Sorry to be so late in replying!
Thank you so much for your kind words and feedback. That is exactly my goal in publishing this blog–to provide information and support for others who are dealing with this rare disorder–so, reading your feedback made me very happy. I hope that you are feeling well and growing platelets as we speak! :)
Hello! I also wanted to say your blog is great! I was diagnosed in Sept. of 2008 and I can relate to so much of what your going through as well. Your mom posted your blog website on the pdsa discussion forum and I am so glad I clicked the link! :)
I’m glad you clicked the link, too! Thanks so much for your comment, Sarah.
If you don’t mind me asking, what is your current status? Taking meds to manage your ITP? In remission? I’m always interested in hearing about others’ dealings with this disorder.
Take care of yourself, Sarah! :)
I have been on Prednisone since September and that has been keeping my counts around the low 100′s but I cant get below 15 mg without my platelets dropping. Ive also done 2 doses of chemo (vincristine) which didnt help. So at this point im talking to my dr about trying a new medicine, Im SO tried of prednisone!
Wow, at least you respond to the Prednisone. It did NOTHING for my counts while I was taking a megadose of 80 mg/day. (Which could be a good thing, because my doctor was, in turn, willing to taper my dosage more aggressively, since it wasn’t helping anyway.) I don’t know if you’ve done much snooping around here, but if you have, you know that I’m a big fan of Nplate so far. Maybe you could inquire about it…
I just wanted to say THANK YOU for posting this blog. My husband was diagnosed with ITP about 5 years ago and it has been a roller-coaster ride ever since. Currently (as in “right this minute”) the Coaster is going down hill fast and he is in hospital with a count of 1,000 receiving platelette transfusion and IV/IG. He just started N-Plate injections last week, so I hold hope that he will soon see good results as you’ve had with N-Plate.
I’ve pretty much read your entire blog from beginning to end and I can’t tell you how much I enjoyed it. You’re writing has really lifted my spirits (even on a day like today). It’s very entertaining and informative. I just wish I could get my husband to sit infront of the computer to read it…I’m sure it would make him feel a lot better about his situation. Have you ever thought I’ve writing a book??
Anyway…thank you again…and I look forward to reading more.
Awww, Tracy, thank you so much for your kind words! If this website truly lifted your spirits, it’s accomplishing exactly what I intended. ITP is scary. Period. It’s only “not a big deal” when it’s not happening to your or your loved ones. The general public doesn’t understand. Walking around knowing that, if need be, emergency surgery of any kind is almost out of the question, knowing that you could be bleeding internally, wondering if there’s an underlying cause…I know firsthand that it’s not fun. So, I’m happy that reading my experience helped. Give the Nplate a chance to work, and I’m confident that you will see improvement soon. As you may have read, it took me a while to see a change, so hang in there!
Please keep me posted on your husband’s situation. Do you like his doctor? Has he been on Prednisone since diagnosis five years ago?
I wish you guys the very best. Thanks again for your comment, Tracy.
And, P.S., I only think about writing a book every…single…day. :) Not necessarily regarding the ITP ordeal…we’ll see!
Hi,
You live in the Houston area? I do, and I am trying to find a support group here.
Been dealing with ITP since 2001. Platelets are down to 3,000….need some advice.
No bleeding symptoms at all!
Hi Amber!
I apologize for getting back to you so late! I do live in the Houston area at the moment, and although I am not aware of any ITP support groups here, I would be happy to talk to you sometime via phone, e-mail or even in person. You may already be aware of this, but I have found great support and lots of answers through the Platelet Disorder Support Association’s Discussion Forum on their website at http://www.pdsa.org. Again, please let me know if you’d like to talk sometime. I’m by no means an ITP veteran, but I’m happy to help in any way I can.
Thanks for your comment and best wishes to you and your platelets! :)
I LOVE your blog. Especially the old entry last August when you talked about the patient suffering from severe anxiety and a scarred psyche from the “57 Fatalities from Rituxan” article. That patient was ME! It literally made me laugh out loud! I then went on to read most of your other stuff! I LOVE YOUR BLOG!!! You are an amazing writer! Write some new posts so you can have me smiling again! Oh, and p.s. I’ve been in remission for over a year…and the Rituxan didn’t kill me in case you were wondering ;)
Wow–that’s so funny! So you’re the Rituxan patient! Really glad to know that you’re doing well, in remission, and not worried anymore. :)
Thanks so much for your kind words about this blog. I sort-of took a vacation from posting when my ITP went away, but I just posted an entry regarding a near relapse. Hope you enjoy and thanks again! :)
Hello, I think your blog is great and hopefully you and others like you will be an encouragement to each other. Your age group is not well represented in the world of ITP and so continue on!!! There are others of us out there and the more we can all bond to spread awareness the better. Please visit our website-though it desperately needs work we are in the process of trying to update it. Also, find us on facebook under charities.
I wish you the best in your battle, and keep everyone updated!
Sincerely,
Christine Grant
mother to Casey Marie Grant, diagnosed at 7 years old, passed away nine days after diagnosis from ICH
Hi Christine! Thank you so much for your comment. I appreciate it very much! :)
What is the web address for your website and how can I find you on Facebook? Thanks so much for your work with this cause…not a lot of information out there.
We want some updates from you! You’re blog still makes me laugh! Let us know how you are doing!
Natalie
Hey, I too have ITP and it is so touching to know there are more people who have this disorder. Reading you About page truly made me want to cry, I remember exactly the same thing. Well, after my second run with ITP and 6 months of treatment of steroids+WinRoe (WinRose, whatever its called)+ that insane chemo-type treatment, it was time to have the splenectomy. That was 4 years ago. Im only 18 and I’m not sure how old you are but I’d love to talk with you anytime. Thank you for creating this blog. So many people should find this.
My son was just diagnosed with ITP. He is 12. We are hoping that it is acute as it happened after a very bad virus/strep throat. I enjoyed reading your blog and am glad you had an acute case. We are hoping for the same luck. Thanks for sharing your experience. It has helped to read some good news about this disorder. Take care.