Kathie,

Unfortunately, the ER is sometimes needed for things to be sorted properly and sadly, to be taken more seriously. The fact that you are staying home, in a way says, "it's really no big deal." Health care, when as seriously ill as we are, is something of a game, and you will need to learn to play it in order to get the proper care. Sad but true--and will get worse with time, I'm afraid.

As for your daughter, I know you've said she has 5 families who wanted to take her with them on their vacations. Surely one of them, or someone else (as it sounds like she has lots of friends), could let her bunk at their house for a few days if you become hospitalized. If nothing else, she could stay in your room with you (fudge on her age if need be!)

Now, about the thymectomy. Right now you are not a good candidate for the surgery, as you obviously have either a bleeding or liver issue, neither one of which would be happy with a major surgery happening. So that is likely going to be put on the back burner at the very least. You will have to be in much more stable condition for that.

Finally, the PLEX.... It is also VERY hard on the body, and you have to have good blood counts and a relatively healthy body in general to do that, too, as blood cells do get damaged during the whole "cleaning" process. You may have to have more testing done to determine what is going on with you now before they put you on such an invasive therapy. Also, you may need to consider that they may want you inpatient for it...which would be anywhere from 5-10 days in the hospital.

In any case, it would be good for you to round up support and care for your daughter. Any of the above scenarios will require it.

I would also suggest looking around for a new PCP--one who will work more closely with you and your neuro, like a team. The whole "Not gonna show the blood test reports" just BLOWS...I would be furious and probably would latch on like a pit bull until I got them (but that's just me.)

Hope you are feeling some better today. Hang in there!