me n my diagnosis: hi im rachel 26 hav... - Hughes Syndrome A...

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me n my diagnosis

rach1081985 profile image
7 Replies

hi im rachel 26 hav been diagnosed with aps 4 nearly 4 yrs now and on warfarin.

i hav 2 children 8 nd 7 mnths.......

nearly 4 yrs ago i was unwelll with flu and did not get better so was admitted 2 hospital. after somtime it was discovered i had clots in my liver spleen and gut........ later they developed on 2 my lungs and i had 2 major clots there............. doctors cldnt understand y i was clottin as i was only 21 yrs ov age....... i spent time in high dependency and after 5 long weeks i was well enough 2 come home...... i was placed on warfarin and saw a haemotologist who diagnosed me with aps...... i was told 2 b careful with fututre pregnancies .......... 4 yrs later i discovered i was pregnant and put on clexene n aspirin daily n carefully monitored........... but at 33 wks i became ill n short of breath.... i went into hospital and diagnosed with a major PE again. 2 save me n baby i had an ivc filter fitted....... and my baby had 2 b delivered at 33 wks by emergency c section......... she was born 5lb 12 n put in special care....... i went 2 recover in intensive care........ after 2 long weeks we both came home.... 1 week later my legs became swollen n painful i was readmitterd n had clots in my legs ....... i couuld hardly walk.......... but 7 mnths on im on mend nd home with my 2 girls........ im still full ov clots n filter is still in....... but i feel brilliant....... i am 2 wear dvt stockings every day 4 a year...... n hav regular checks on my inr.......

i feel lucky 2 b here at 26 as twice my lungs hav clotted and spent time in intensive care n high dependency unit......... but tha is life..... im happy with my life 2 girls n will neva hav any more children as i want 2 c them grow up and not risk anythin ......

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7 Replies

Hi Rach

Thank you for sharing your story. What a brilliant outlook you have on life - very refreshing, too often we focus on the problems but you have two beautiful daughters to remind you of the positives. Congratulations and keep smiling, your year in DVT socks will fly-by.

Tx

MaryF profile image
MaryFAdministrator in reply to

well said x

rach1081985 profile image
rach1081985 in reply to

hi luv thnx 4 ur nice comment xxxx i hav many problems bt hey ho tha life........ thnx 4 tha xxxx take care xxxxx

Suzypawz profile image
Suzypawz

You hav'nt had it easy have you :(

But now you have your 2 girls to be with you & have a reason to make sure you'll be ok, the year wearing the socks & filters will soon go by & hopefully then you'll be ok & enjoy the time with your girls :)

I have 2 sons, now 18 & 23 & even though they give me a lot of worry!! I wouldn't be without them, they give you a reason to go on whatever :)

Hope you are well & keep well hun, Sue xx

rach1081985 profile image
rach1081985 in reply toSuzypawz

thnx hun i certainly do enjoy my girls n the stockings dnt really bother me nw ......id rather hav filter in so im safe if u knw wa i mean the clots cnt spread 2 my lungs........ awwwww bout ur boys xxxxx u keep well 2 thnx xxxxx

jessielou profile image
jessielou

Hi Rach

Welcome and good to meet you, sorry you have all this to deal with.

So glad you got your beautiful girls, our children are our miracles!!

They are such a blessing cos we have to keep fighting and getting up.

Mine are 28, 13 and 11. Two girls and a boy, plus my amazing stepson who`s 12.

Big girl is moving back home with her partner for a while so a very full house, lots of noise and fun, the more the merrier!!!!

I had to wear the Dvt stockings for a year after dvt and PE, Then again after hysterectomy, like you say better the socks and filters than clots hon, and it does fly by.

I hope you feeling well today.

Take care gentle hugs Sheena xxx xxxx:-) :-) :-)

Storky profile image
Storky

Hi Rachel Welcome! I ditto Tasch's comments. Stay well!

Dress up those stockings and wear them loud and proud - maybe we can all make a fashion statement of them , hell aren't over the knee socks in this year anyway!! (((0)))

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