Sticky Blood-Hughes Syndrome Support

Went to see the Hemotologist

Well tuesday I went to see the Hematologist to see what she thinks about all that has been going on with me in the last 4 years. The doctor was greatly frustrated as the Labotories have screwed up my records so bad that I have 3 different accounts with them. Then the hospital I should normally go to has done the same. Instead of hyphenating my married name to my maiden name as we asked them to do in order to keep records all together has proven to be too hard for simple minded people. The doctor didn't even charge my insurance for the visit because there was no medical records for her to look at.

She had reports that there "MAY" have been an infarction in my left kidney but no one is absolutely sure. There was information in the report about the 2 miscarriages, and 4 preterm labors, and the last two pegnancy with preclamsia signs. She also told me she had a report saying I had a dangerous episode of ITP and many rangers of Anticardiolipin and Antiphospholipid Antibodies. So our plan is to get all the records together and then we can sit down and look through them together.

I asked about where the pain comes from, how I can deal with it, and what type of job would be good for me to work with this disease. She advised me that she wants me in the line of work where there is shared time of sitting and standing/walking. I would like to keep moving so that I can build up muscle mass and lose weight from my 3 years of sitting on couch unable to move. So heres to the Hematologist, "Cheers" Now lets Fight Fight Fight

2 Replies

Hi there

I find that for my pain I use heat - those with lavender are pretty good at the end of the day!! I use sweat bands to make sure that my wrists don't get cold (i have also used leg warmers for my ankles or knees!!). You can also get those sticky heat pads that are brilliant! Worth a try to avoid popping more pills!!

Good luck getting your results together - I guess we are lucky here that we are patients and although notes go missing sometimes we aren't often viewed as accounts - although having an odd "three name" name I sympathise with you!

Take care and good luck



Hi hon

sorry only just seen this, got horrid brain fog and on New meds, which made fog worse.

Anyway just wanted say welcome to forum.

. I can sympathise with hyphenated surname as i too kept my maiden name and it has caused similar problems for me in the past. Is frustrating cos the labs, docs and their admin staff are supposed to be intelligent people. Its not rocket science gettin our names right. I had huge problem when 13year old daughter was born, were they put my maiden name only on her ankle, wrist bracelets, and same on her hospital records, needless to say i was fuming and so stressed out, not good when just had emercency c- section. Idiots!!!!

So sorry you having all this trouble!! I do hope your haemotologist gets things sorted for you.

Take care, gentle hugs, love jessielou x x x x


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