What happens when there is a bleed?

So I am thinking allot. Learning allot...and I think for me and my auto-immune soup that the options that were put to me last week by my hemo are questionable.
I have read Dr Provan and his team of 22's report and watched the video so far twice.
So then I need to ask you all, why would someone with very los counts, and auto-immune disease(s)
choose slendectomy re infectons and rituximab re possible disaster due to complications?
Why isn't just being careful and watchful and faithful to the blood work the ONLY answer for these people? Just how many folks with ITP get into serious trouble with bleeding? How do they treat that patient when that might happen? Dr. Provon says it really doesn't happen that often.
Is it more difficult to treat a bleed for a person with lots of auto-immune problems too?
Lots of questions, thanks Sandy Too

Sandy - I think there are two reasons why people choose splenectomy. One, they are not aware of all of the risks associated with it and do not look at the big picture. Doctors and patients sometimes want to fix things for the present but don't think about the future. Sometimes they end up trading one problem for another. Those who already have other autoimmune issues tend to think ahead and take splenectomy more seriously. Two, some people have gone though every treatment there is and do not respond. In that case, they only have one option and for them, it's worth a shot.

Many people actually do okay with low counts, but some can't handle it emotionally and panic. They choose to treat. Those who do have bleeding at low counts do need to take it seriously and try something. Serious bleeding does not occur often and in fact, I am seeing more clotting than bleeding. The main bleeding problems that occur are GI and brain bleeds. I'm not sure how they treat those; it depends on the situation. Studies have shown that more people die from infection than from bleeding.

Yes, it can be more difficult to treat people who have other medical issues on top of ITP. For example, those with diabetes have a lot of problems with steroids.

So I am still struggling with all this. Part of the problem is somehow, maybe from the Provan study, I have the idea it's not that big of a deal. Or maybe it's that I am so used to the battle with auto-immune illness and for so long and still I do okay. I was told back in 1998 when diagnosed with Addison's that it was a big deal. I was told I should have to have this injection kit in case of emergency...car wreck or something...but I thought you know if I am that banged up in a wreck...how in the world would I first find my injection kit, in a wreck, then administer it among the wreckage? I am not a mountain climber or skydiver...I go to my grocery store, to visit friends, and am at home. I think my telephone is my best emergency device.
So maybe from all this and all this time with nothing happening to that extent I now have a false sense of security? Could be that I am just to tired at this point to have the energy to have a healthy fear of it all. Am I being dumb about this ITP thing? Or can I feel okay about higher risk lifestyle changes, being watchful and respectful of it medically, and then taking no chances if I do notice bad bruising or I cut or hurt myself and go to the ER?
My platelets have always been 13 when I get my blood work done and they have no chance to go lower as as soon as my hemo gets the blood work back she calls me and I am back on the pred.
So I am not sure just how low they could fall. I hear your statement re "taking it seriously" but from all the stuff I have been learning and my own past health it's hard to. But I certainly have also been reading about the dear folks on this site who are in serious struggles and absolutely know they are not dramatizing anything. I am so conflicted about it all. Sandy Too

Sandy is the injection kit for your Addison's or for ITP? You are on steroid replacement therapy for the Addison's? Do you know what to do if you have a crisis?

Sandy - I think the best way to approach ITP is to be vigilant and not panic. It can take some people time to get there but it looks as though you already have. You can take ITP seriously and still be relaxed about it. Don't go by counts, go by symptoms. A cut wouldn't necessarily mean a trip to the ER. You could probably stop the bleeding with pressure. Now if you cut an artery, then yes, you'd need emergency treatment.

Just stay on top of things and keep going on with life. Counts can get as low as zero but people do survive it. Most people know when they are in trouble as far as low counts go and when that happens, help is available.

Thanks, I think so too. I am glad as I haven't the energy right now to panic LOL!
Melinda I do take the replacement dose for Addison's and the emergency kit would be for an "Addison Crisis". It is about going into shock I believe in case of a major accident of some kind. But I also can go into crisis if my temperature gets to high. So I am told to go to the ER if I get a bug when my temp reaches 38 degrees which is about 101. There have been many of those
situations since diagnosis in 1998. I just go to the ER and they give me IV fluids, hydra-coritsone I think it is called, which helps my body to cope with what ever it is not able to do on it's own. Fight or flight hormones that are supposed to be made by the adrenals.
Also they usually end up giving me antibiotics to usually by that time. Only once I was admitted for a few days for pneumonia that turned very suddenly one night.
I wear a medic alert bracelet always as well. I have been thinking of maybe getting a new one to add the ITP and immunoglobulin stuff. I am told that with IGA and IgG issues if you needed blood you would have to have it treated first. maybe that is why I had the IVIG reaction? There are two kinds of IVIG, I have learned thanks to this forum, and Dr. Provon and I would need a modified version because of the IgA issue.
Yes Sandi, lots of people have a full time job....mine is just all about me! Thanks a bunch, Sandy Too

That's what I thought Sandy but wasn't sure from the way you had written it. I have an acquaintance who has Addison's and her "case" is very bad.

I have only a low IgG so have to watch for infections. I do not have CVID thankfully.

Adding one thought to why I'd choose Rituxan - some people but not everyone feel sick when counts are low. I could barely function with low counts, the fatigue was terrible.
Erica