The Platelet Game

This was a game that the ward nurses, Ward Doctors, Consultants and I played during my time as an inpatient which was guess my platelet count.

Did anyone else play this game while in hospital because it was quiet fun. Usually i was the closest if not exactly right. It is strange how you can feel things like that.

I used to try to guess but ended up wrong too many times. I had symptoms when I shouldn't have and no symptoms when I should have. That happened over time.

I was never hospitalized with low counts, so played the game by myself. That's no fun.

Yeah it is much better with multiple people.

The first time i was hospitalised because i was neutropenic as well as low count. After that it was because i had 0 on my count and the last time was because of bleeding. is only been like 7 weeks since i was diagnosed and over 3 of them where in the hospital. One week in one week out.

I found it was a way to break up the day and take my mind off the situation. Because when i was told i had ITP i didn't really get told much other than if you are below ten thats really bad. And they worried me more than was needed if they had of explained things better to me and prepared me better for what to expect.

Speaking of weirdness. I bled out of a blood sample wound for like 2 hours after it was taken when my count was 6 and stopped in less than 5 mins when my count was 0. This was weird to me but i have always believed i am wired differently to most human beings.

Mark:

Six and zero are very close. There is a margin of error with counts, so they are not always exact. If it is an automated count, other cells can sneak in there and be counted. Also, sometimes platelets are smaller than usual and don't get counted.

Sometimes it's a matter of how good the draw was; if it hits the vein in a weird way, it will bleed more than usual.

I would say that my symptoms, whether 3 or 8, were pretty much the same. Actually, I had worse bruising when I was at 8, but I could have been lower than that when it started. Don't know because I didn't have counts done every five minutes. They change.

I'm hopeless at the game. Have a couple of lovely purple bruises and a smattering of petechiae and assumed my count was below 50, turned out yesterday that it's at 80 so totally wrong. I do know when it's under 5 though because of the nose bleeding and mouth blisters at that count but other than that I usually get it wrong.

Not long ago at work I cut my finger on opening a drug vial, you have to snap off the glass top and my finger got in the way! It bled so much it was just silly. I wrapped a swab around it and it was okay until I took the swab off and it started off again. Bled like that for five hours. My count wasn't all that low then, 20 something is all.

Sandi: i have had similar problems with bleeding when my numbers where higher but at this mo i can't remember the number .

And I am told that all Platelet counts in hospital where sample are marked as ITP are Manually checked. (This came up when i questioned if my 0 count was a computer error)

I seem to get purpara for any result less than 20 but seems worst at higher end. I don't seem to get unexplained bruises (touchs wood) so far. But sub 10 i have had bleeding in my eye, UT, nose, cheeks, gums and throat. But i always feel its not that i am not not clotting (sorry about double negative) but that it is just not holding in place.



Ann: I am sometimes miles out with my guesses too just happens that the registrars here suck at guessing.
I have to say as a relative newly diagnosed ITP sufferer i am still a little in the wrapped in cotton wool stage where i look at every thing as a device to make me bleed. Not that that stops me walking into walls which i did today and as my nose hit the wall my words where s@$t don't bleed please don't bleed. Thankfully it didn't lol.

I got given Naseptin aka chlorhexidine dihydrochloride/ neomycin sulphate cream which is antibiotic cream which has made my nose feel better and not had nose bleed since then so that helps.


Just FYI my last platelet count was 122 and my guess was 40. I just didn't think the Eltrombopag would work that quick so it through me off my game.

Haha, we used to play this all the time with Dougie's count. It hasn't been so interesting for the last 18 months as his count hasn't really moved much either side of 10. In the days where there was some movement, we used to wager a tube of Pringles to the winner! I reckon I can predict pretty accurately under 30, but above that is just a guess.

3 weeks in hospital........you must bave been climbing the walls!

it was 3 separate weeks one week in one week out but yep but i passed the time by annoying the nurses (in a nice way) and watching all seven seasons of the Shield, aswell as about 12 films on my new portable Blu ray player which saved me from killing someone that and visits from my family. And the occasional drop in from a friend of mine who is a Doc in the hospital i get treated at.

We started doing it as a way to lighten the mood as frankly they all a bit serious not sure if it is because they didn't know what i was like but i need a little light heartedness keeps the positivity up which i believe helps me get better.

I barely got the smell of the hosptal off me before i got yanked back in but hopefully eltrombopag will keep me out of the ward for a long long time


Was it a tube of BBQ Pringles because i think for BBQ pringles i could guess better

Mark, Sorry to hear all you've been through, but great that you found pdsa forum! Glad you found something that works.

I thought I could tell where my platelets were at, but this week got a BIG surprise. I had no signs except light bruises on calves (normal) nose was clear, really nothing. I guessed that my plates were above 30k. Hemo called me saying my counts were at 1K! They've never been that low- wow. Its so weird how I have no signs of low counts. When my counts are in the teens and 20s, I get more signs than this. The only other time my counts were very low(6K) it was the same thing- no outward signs at all.

I think there is something going on here but not sure what. Have you read the article that Sandi posted about people with ITP having platelets that are more "activated"? I can't pretend that I understand everything in the article but I believe it is describing my platelets. pdsa.org/forum/7-treatment-general/24198-new-article-re-eltrombopag.html#24203

So I think the reason my platelets crashed was a sore throat virus. Plus I tapered back on my meds, Eltrombopag (Promacta) and prednisone. Now I am back on 25mg eltrombo and 15 pred. My hemo knows I don't like to over-treat so he didn't even suggest I go to the hospital. He said whatever I want to do is my decision but did warn of a brain bleed and said it can happen in your sleep. Not a pretty picture. He suggested I take 20mg prednisone right away. will be checking counts again tomorrow.

As i said when i got diagnosed with Autoimmune hepatitis, I would rather it was me that was sick than my friends or family because i have the constitution to be able to deal with all this (most of the time).

yeah when i got diagnosed i was like 4K with no bruises or anything.

Yeah i have a feeling if the Eltrombopag is doing as good at my next clinic appointment on thursday they might reduce my dose to 25mg and keep my pred at 10 but thats for other conditions cause 80mg didn't help my platelets at all.

Yeah they told me about the brain bleeds on my first day in hospital and i was stressed out every time my head got a bit sore. I do feel i wasn't greatly informed by docs on that first week.

Mark,

The winner got to choose the flavour - the kids always went for BBQ, but I won more frequently and I reckon you can't beat salt and vinegar!

On a less flippant note, how are you finding eltrombopag? My 13 year old son is about to start on the paediatric trial of it, and both he and I are a bit nervous. He's been warned about headaches and upset stomach - is there anything else you've noticed?

Ali

Yah, Gotta have a sense of humor! It took a full year for me to relax and trust I was okay with up and down counts. also got a new hemo who wasn't so intimidating.

I've posted this before, but 25mg Eltrombopag did nothing for me last year, had to go to 50mg for any response. Now this year 25mg is working. Can't say I feel any different on the 25mg. But I do feel safer under/around 50K platelets when I'm taking Eltrom. thats just me, I worry about clots.

I had a fear of hitting my head until I fell 2 yrs ago walking my dog and hit my head hard. I got 2 black eyes, counts were around 20K. Opthmologist said my black eyes were completely normal, he wouldn't have known I had a bleeding disorder if I hadn't told him. He then went on to explain how clotting is a cascade reaction involving many chemicals and responses. And how platelets are the first line of defense but the cascade comes right in after the platelets, and even if theres a missing component, the clotting can still work. That was great information for me to hear, but why didn't my hemo ever explain this, it had to come from an Opthamologist? :blink:

Ali- I get a mild headache the first day or two of eltrombopag/promacta. Then it goes away. I take it in the middle of the night and have a dry mouth in the morning. Dentist told me dry mouth can be bad for teeth, so I drink water keep teeth brushed. Haven't had any upset stomach. Honestly the side effects are mild, esp compared to prednisone. Been off and on it over a year. I get CBC twice a month, they check liver once per month. All good!

Alison,

I got to say i am a little more bias than most for the use of Eltrombopag as i was involved in the pilot production of the drug for the trials but i have got to say I am as far as i am aware side effect free i get a bit of pain at the front of my head once every couple of days but i put that down to the vast time i spend on here

I hope your son has as good an experience as i am having. Only problem with me is because i have AIH they are watching my liver enzymes like they are a beautiful woman.



Posey,

I have been in and out of hospitals for ten years you really have to have a sense of humor and patients (i am sure thats the wrong spelling but i can't think how the proper spelling is). The problem in my hospital is that there are three hematologists based there and you can be seen by any of them or if it is a weekend any of the other three from neighbouring hospital. So basically in the 8 or so weeks i have had ITP i have seen 6 different consultants which is just confusing.

I tried to look at the chart for clotting and it started to make my head hurt and i am used to fallowing complex chemical reactions but my brain went NO more. Sometimes its the nonspecialists that can explain things in terms the mortals like us can understands.

My Friend Steph who comes to see me in hospital is Dr so when something comes up i don't understand i wait till she comes up and get her to explain it. I think i am giving her a great hematological education free of charge

Ok quick Update people

I have been switched off Eltrombopag because they think there is an absorption issue. So i am on N-Palte first week my results for 4 after a 100micro gram dose i then got a 200 microgram dose and my Platelets went up to ...................................


Any one want to have a guess?

5?

I will put a proviso that the count is below 30K. I will not post number until tomorrow night.

12

23

17

27

The Magic number is 26 so Congrats April you are the winner.

So it's not like Price is Right where you can't go over?

That's what I was thinking. If you can't go over, I'm the winner. It's Mark's game so he can makes the rules I guess.

yeah sorry i play it as closest but if you want to play it as you can't go over thats fine too

You can play it any way you want. :whistle:

Ok People wellcome to Platelets are right

(Cheers from crowd)

Today we will clear up the rules for this edition. The rules of the game is you may be one platelet under but you can't be one platelet over (Price is right rules)

As you are all aware my last count was 26. That was last thursday where i was kept on 80 prednisalone and given 300micro grams of Nplate (An increase of 100 on previous week)

The Previso this week is that my count is under 50. So come on down people and have a guess but remember if you are over you are out.

My number will be posted no Earlier than Monday the 18th of june

36

42 I am an optimist!

I'll say 25, since Ali got the answer to the Ultimate question of Life, the Universe and everything.

Lol No Winners this time. My count was 2 so sad times.