Just diagnosed

My count swings between 2-10k, my first doc had me hospitalized at 2k, but my second doc doesn't recommend hospitalization as otherwise I have no bleeding or any other clinical symptoms.

thuathien wrote: Hi Dean,
When my platelet count is below 20, my hem doc tells me to go hospital right away. You said you are never hospitalized even when your count was 2. Your hem doc did not urge you to go to hospital with that count? To me I am afraid when my count is in borderline (around 20) because my hem doc can call me hospitalized anytime if the count number is below 20.
Thank you.

As Sandi mentioned, hospitalization depends on the Dr.

Thuathien, I worked 60 hour weeks for 3 months at less than 1,000 platelets... I'd get some pretty amazing bruises on my knees from kneeling on the floor a few minutes at a time. I also got petechia on my butt on my day off from sitting on the couch- that was actually pretty funny in hindsight... (Get it? hehe)

JJBDVM10 wrote: Thuathien, I worked 60 hour weeks for 3 months at less than 1,000 platelets... I'd get some pretty amazing bruises on my knees from kneeling on the floor a few minutes at a time. I also got petechia on my butt on my day off from sitting on the couch- that was actually pretty funny in hindsight... (Get it? hehe)

Haha, I worked also with counts of 1 and 2 and got bruises in lines across my legs where I'd pulled out rectangular bins full of papers, and sort of half rested them on my legs while rifling through them. I also got a huge purple bruise in my natal cleft known also in the UK as the bum crack (probably butt crack in US) from where I'd been sitting on the bus and it had gone at speed over the speed bumps.

Turning into a funny bruise post. Right before I was diagnosed I was at a Red Sox game and had lines across my back and thighs from the rails in the seats. I was at a 1 when I was admitted.

KaraP wrote: Turning into a funny bruise post. Right before I was diagnosed I was at a Red Sox game and had lines across my back and thighs from the rails in the seats. I was at a 1 when I was admitted.

The bruising is not so funny, but how you got it kind of is.

I hope it's ok we can all laugh about our bruise stories- I can't tell my stories to non-bruisers because they make that sad pity face. My 3 year old labrador retriever tried to retrieve me while I was swimming in our lake. Those bruised were UNBELIEVABLE- I looked like I been attacked by angry wolves on my arms and neck... Made worse by the fact that I work at a veterinary clinic- that sort of thing scares the crap out of little ole ladies with Bichons...

And, BIG oops/sorry for high jacking the post!

How you doing KaraP? Any good news on platelets?

I went from 35 to 24 up to 27. So no drastic drop or increase but we held off on the ivig in hopes that I am stabilizing. The petechia faded and only have a few unexplained bruises so we will check Thursday and if I stay in the 20's great, if I fall into the teens or lower we will treat with another ivig. I can tell I am still not rising because I am exhausted. I can't stay up to finish a movie I keep falling asleep on the couch. Or maybe the movies I am trying to watch are just boring....lol.

JJBDVM10 wrote: I hope it's ok we can all laugh about our bruise stories- I can't tell my stories to non-bruisers because they make that sad pity face. My 3 year old labrador retriever tried to retrieve me while I was swimming in our lake. Those bruised were UNBELIEVABLE- I looked like I been attacked by angry wolves on my arms and neck... Made worse by the fact that I work at a veterinary clinic- that sort of thing scares the crap out of little ole ladies with Bichons...

And, BIG oops/sorry for high jacking the post!

I had to be careful around my dog. I enjoyed wrestling with her but did not want to look like the dog WON!!!
Know the feeling Kara. Hope your counts rise and you get some energy back!!!

Blood work today and a slight drop down to 22. Not real optimistic about the Rituximab anymore. I am scheduled Monday for another ivig. My doctor is hoping that will hold me for another couple of weeks.

Update....doctors office called today about my so called Monday appointment they were full but had an opening today. So I went for my ivig and mentioned to my nurse that I had a headache which started last night also numbness and tingling on the left side again. She was concerned...me not so much, but there always is that twinge of doubt. She spent hours trying to get a doctor to check me out, to no avail. Finally found one of the hematology NP'S who came and chatted with me. She then conferred with the doctor on duty who sent me for a ct. I then got the news that I was to have an MRI. And that there was something odd with the ct. I ended up being at the hospital from 11:30 am to 7:30 pm and left after the MRI was completed. They had told me to stay, but the MRI people sent me home. I finally gave in and called since I had not heard from anyone. I actually spoke to my hemo who happened to be on call tonight. The good news is nothing to be too concerned about just an anomaly probably genetic or whatever. But not a bleed or a clot which was what their concern was.

After all the medical mumbo jumbo I said " that sounds good obviously nothing going on up there!" to which he replied... " oh I never said there was nothing going on up there just not what we thought we would find. So we can say your headache is just a headache."

What does that mean? Well at least I know I am not having a brain bleed and I do not have a clot. He also stated that he was doing some research after I had been brought to his attention again and he may try some other drugs used more for pediatric patients. I am not sure which he was referring to but I will discuss further when I next see him. He is pretty convinced the Rituximab has had no effect.

Oh well....

I am appaled by my sentence structure! I was just reading over my posts and I am blaming it on typing on virtual keyboards. My headache is worse today. I hope it goes away. It is going to be really hard to concentrate at work like this. I hope everyone has a good weekend!

Kara - your hemo is probably not all that qualified to read an MRI. My recent experiences with that have shown that radiologists usually read those and write a report for the doctor. A neurologist or neurosurgeon would be the next doctors that I would expect to understand an MRI of the head. That is probably why you got a vague answer. You should find out more when the report comes back.

The only med that I can think of that is used for pediatric patients more often than adults is 6 MP.

Last weeks counts were normal after the ivig. Doctor wants me to be vaccinated in preparation for splenectomy. He feels that the Rituximab didnt work. I hovered in the 20's the last month or so. Had a tooth extracted yesterday thanks to the high levels. I am hoping this may be the root of my problem. I have another tooth that I need a root canal done on but scheduling has been hard. Doctor said he will let me get all this taken care of before he schedules a consult with a surgeon . I am hoping that maybe fixing the teeth will allow me to stabilize to safer levels since I am really opposed to the splenectomy. My hemo just doesn't think it is safe for me to " live with counts in the 20's" he claims I am too young and am risk for developing other complications like anemia due to the heavy periods each month. Keeping my fingers crossed. I hope everyone is doing well and I just want to say again how grateful I am to have this place to come vent to.

Boo hoo only 22. So tired. I hate how tired I feel.