Good morning everyone, this site has helped my heart and mind so often. Thank you for the input from all of you that also go through living with APS and all the extras it has with it. I am home on bed rest and will undergo two ultra sounds again after a few weeks of hoping this 9 cm cyst that is filled with blood will absorb into my body on its own, as surgery is not an easy option with Hughes. The pain is crazy, so much swelling right now also. I went right into urgent care this week from some bleeding as I used the restroom. I have been feeling very dizzy and fluish lately. I was hoping maybe someone else may have had this experience to share or? Also is there anyone that can better explain the joint pain/tissue related struggles? I keep telling myself to purchase the book Dr Hughes wrote and have not done this yet, sorry to bother. I will be doing that right away. My appointment with the specialist in the Oregon area is this week, not wanting to travel with this cyst as it is at risk to burst and this would cause internal bleeding so I'm follow Dr instruction from urgent care, yet they do not fully grasp APS entirely. There seem to be a lot of blanks when people see what I have...it becomes so frustrating.
God bless and thank you all for listening and for the support you all give.
Becca
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I think you are right to stay put until this problem is resolved before you travel, maybe order that book off Amazon USA and read it while you wait! Express delivery, I just took a look and they are on there. I am glad you are getting some constructive care. Presumably they also need to get to the bottom of what type of cyst it is! MaryF
Take real good care of yourself and follow what Mary said! She is a wise person that knows APS . I am like Dave thinking of you! How are you managing the INR-levels?
Thank you to all of you. My INR's dropped with no change in diet or amount, I was feeling better at the 3 to 3.5 level but in the urgent care I was at a later 2.8. The cyst is not cancer, Praise God! It is a cyst filling up with blood that they hope to allow it absorb without rupturing naturally. Its very painful but I am grateful to have care. Thank you again for the thoughts everyone.
Yes Thank you Becca. I have been to a Concert in the open air with the Royal Philharmonic Orchestra. Thousands of people sitting in the grass close together.
I am so ashamed that I could not spell to God. Hope he forgives me.
I have never had a blood filled cyst such as you describe but I did have fibrocystic breasts and uterus. They went away within a year of starting a gluten free diet --and I know this tidbit of information does not help now.
Do remember that if surgery is needed, then doctor's who are experienced with APS can bridge you from warfarin to injectibles -- the reason being that injectibles have a shorter half life, so you spend very little time at a low INR. I had no problem eith APS symptoms when I had my knee replaced this past November.
Good luck, and do let us know how things go!
Gina
Becca
I hope I don't worry you, I had an ovarian cyst that burst (I was competing at snowboarding, at altitude and on warfarin at the time!!) but actually, they operated in France, in the middle of the night and I woke up in intensive care. It took me a week to get back on my feet but I was back racing horses three weeks after that... The point I was really making, was look after yourself but also know that this happened to me and it was all manageable, so please don't worry about it too much!
Sorry to hear of your on-going problems. It is hard to know what is an APS related problem and what isn't. Uncertainty is just part of the burden. I'm praying the Doctor up at OHSU is more help to you. (That's partially selfish because I am going to make an appointment to see him too.
Becca-- I have had 2 surgeries--off warfarin and on enoxaparin-- injected into abdomen. i am an 80% risk factor even to have a lose tooth pulled.. They will bring you down to 1.2 or so on the inr.--BUT lets hope you won't need this at all. sorry i have been lax on here ,As you know i am here in N.H.---I will keep a closer eye on you and am here if you need . The best of luck to you an keep us informed.
Fighting some things here myself ,but hope to start addressing them soon.If Mary F doesn't shot me fist -- HA HA .There are great people here-- always willing to help.
Thoughts are with you, you're doing the best thing by not travelling....but maybe having inr lowered, have injections then having the op would be wise? It is a worry either way for you.... It's a big decision many of us have to do at some time or another I hope you are ok, hugs to you x
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I hope you are ok, hugs to you x
More information. More confusion.
Been to see Prof Khamashta...
Hello APS family and friends
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