Professor Graham Hughes' Blog - December 2019

[MaryF]

ghicworld.org/post/hughes-s...

MaryF

[HollyHeski Administrator]

Thank you for posting.

[MaryF Administrator in reply to HollyHeski]

No problem, they are so useful, and help so many people. MaryF

[KellyInTexas Administrator]

Thank you for posting , Mary.

This one hits very close to home for me.

I almost lost my life at 18 months with a milder version.

My platelets were at 3,000-

I woke up with the rash - diagnosed with ITP. ( this was in 1970 in Ft Worth Texas.

I was also in ICU under the care of a lead hematologist. I had major lung issues, and was pleased in an oxygen tent. ( I spoke about this at my sisters funeral last week, as she would get under the tent with me and it was so comforting to me- I remember it quite well!)

The team wanted to remove my spleen but I was too ill.

I was placed on very high dose steroids- and I don’t know what else. I had multiple organs involved.

I was in icu for 6 weeks.

I was not expected to live.

Of course, APS had not yet been described.

My Hematologist now thinks I had micro clotting going on throughout body- CAPS.

The high dose steroids did help considerably.

Of course my mother was still dealing with clotting herself after my birth.

[lupus-support1 Administrator]

Thank you, Mary. I will repost to LUpus Patients Understanding & Support (LUPUS)!

[MaryF Administrator in reply to lupus-support1]

Thanks. MaryF

[Fra22-57]

Thankyou Mary.His blogs are written so well and are interesting.Not good memory for you KellyInTexas .sorry to hear of your sisters passing

[Ozchick]

Know my brain doesn't always function as well as it should-but is this last years blog for December 2019 or should it read 2020?

[Vespa1]

Thank you for sharing the open forum. Even though it was 2 weeks ago it was extremely informative and answered so many of our concerns around COVID-19 and the injection. Well worth a listen all.