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Hughes Syndrome APS Forum

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Anniversary

jetjetjet profile image
12 Replies

Anniversary - But not a good one Ha Ha . 8 years ago this Friday Sept 1 2009 at 3:30 A.M. i signed myself into ER with what I thought was a strained back muscle --

WELL was I in for a surprise of my life !! Clots in both lungs [ r ] lung clusters of clots every where and [L ] lung a clot over an inch thick across both of lung yet i still had a 97.3 Oxygen reading ?? This was a Monday - Tuesday they found DVT [L] side In groin - behind knee cap left leg - left side of neck and under left arm Pit They said Mr L you are going to be with us for awhile .few days later they said well J you have LUPUS ANTICOAGULANT . !! What is that -- that was my start . So I guess it would be UNHappy Ann. Ha Ha and to top it off it Was My Housemate of 23 years Birthday !!

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jetjetjet
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12 Replies
HollyHeski profile image
HollyHeskiAdministrator

At least you can laugh about it now!! You survived it!! I believe all of us that have APS, are special, we still find our humour in life, we soldier on with our disease, fighting for quality.

Happy anniversary ha ha too!! xx

MaryF profile image
MaryFAdministrator

Hi there, thanks for writing this... I started this up with a few others not too long after that time, maybe 18 months or so, glad you are still on here. MaryF x

Fra22-57 profile image
Fra22-57

Wow.hope future is a shiny one now. My eyes widened when I read this as I went to my GP yday as suffering pain in mid back. I said I was getting more puffed doing things going upstairs but I said I suppose that's cos have other complaints diseases. He pressed on point and own spine.well top of spine was very painful and side bottom edge of right scapula. He said I needed strong inflammatories but couldn't prescribe as I was on warfarin and too much medication like prednisolone. So co codamol and ibroprofen gel only til I see my rheumatologist on Monday.

Your post really made me hope I hadn't got what you have thou.

So pleased they sorted yours and health goes smoother for you.

GinaD profile image
GinaD

We usually save the phrase "Happy Anniversy" for Annual commemoratives of happy occasions. But I will say it now: "Happy Diagnostic Clots Anniversery" because you did get the diagnosis, you persevered and you persist Yeah!

And of course, by posting here you inspire us all with your strong character. Keep on keeping on!

Gina

Lure2 profile image
Lure2 in reply to GinaD

Hi Jim,

I agree with Gina. I think you are an extraordinary person with a strong character who fight this illness we all have here. We know what it is for sure. I know what you have gone through and I admire you because you will not give up on yourself.

I am so glad that I can be and am your friend here in Stockholm.

Kerstin

Actually, we are a couple of lucky ones. I had a similar beginning, SO HAPPY a member of the medical team found APS so quickly. Some folks on this site waited a long time. So, happy anniversary. Thank the good Lord everyday that you found out in time to maintain.

Jamaica1951 profile image
Jamaica1951

Thanks for sharing your Anniversary! Happy Healthy days to you and all of us.

Tofino5 profile image
Tofino5

I say, celebrate this day every year!

On my "anniversary" I make something special for dinner. This year it was homemade lasagna noodles for a nice lasagna. I wanted to try to get some chocolate cake, but that didn't happen! Maybe you can share a cake or pie with your housemate :-) for their birthday.

A dear friend says "I can deal with what I know". For many years I didn't know what was wrong with me and so I feel very lucky to be here after DVTs and PEs. It's hard to go thru all of it, but knowing what you have you can get educated and get the health care you need.

Thanks for writing! Ask questions and if you feel down, you're sure to get lifted up here. The people on this forum are great, and a great source of information too.

marniegirl1989 profile image
marniegirl1989

It's my clotaversary today too! 2 years today I was diagnosed with massive ilio-femoral DVT and pulmonary embolism in left lung. I'm glad we survived to tell the tale!

jetjetjet profile image
jetjetjet in reply to marniegirl1989

Got to love that name Clotaversary -Most of all my other Dia. problems are directly related to this lovely dis-order. Next worse most likely AVN, Muscle Spasms,Memory loss.and lets not forget my Trampoline INR HA HA I test again today ,3.6 last tues - BUT it took 3 weeks to get it back up even though we upped my Jantoven !! BUT i have been like this since the start 9-1-09.----Have a superfabulous day all of you sludge bloods out there in sticky blood land .. Casey and I

GinaD profile image
GinaD

"Clotaversary" has nowbbeen added to my mental dictionary.

jetjetjet profile image
jetjetjet

Clever - i need to go do my blood - just got my back shots - should of been 36 sites done BUT back so bad i only got 18 sites-another bent needle today -muscle spasm while needle in neck believe it or not .Going to see Kristina and paul they are up from down south .

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