Sticky Blood-Hughes Syndrome Support
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Doctor visit in Portland OHSU

Good morning to everyone,

Today I am returned home from our appointment with the blood specialist in OHSU in Portland. The visit was clear cut and fast. Not much room for all the questions that I had written down, yet the specialist seemed knowledgeable and agreed on my blood levels remaining at 3-3.5 and prescribed a self testing unit for my INR along with Plaquinel (sp?) They took all new blood scans and prescribed for all new scans w/the ultra sound machine etc back home upon my return this coming week. The blood tests were to be called in w/results and long term plan the day after our visit. They did not call so I called instead, they apologized but stated they had to send my blood to the east coast for second viewing.

The blood specialist stated that it is APLS and Lupus non specific. He was confident that with his long term plan that I would be feeling better and safe very soon. I hope to travel back to India and where ever else God will allow the mission field to take us, yet for now I am staying put until we deal with this blood filled cyst. He said they would be able to bridge the blood and then drain the cyst as this is common to have cyst filled with blood with APLS patients. I believe the Liver cyst is also back because the exact pain has been pending for a month now. The scans will reveal all of this

Anyway, overall, I wanted to give a check in to everyone that has been supporting me on this site. All of your encouraging words have been so helpful to my heart and for reassurance going along this journey.

There is so much common ground here and with it being invisible to most that do not understand this blood disease, to most the pain and even the confusion to what goes on within is undetected especially if you are like me and you simply bounce in life anyway. So thank you for the support.

I have been blessed with so much energy and zeal for life that this has taken me back about half throttle and has even played havick on my mind, it isn't something you can tangibly see so it baffles me when I am too stiff to move or filled with fatigue or can't get words out correctly or just plane old fashioned chronic pain and swelling. The DVT behind my knee shut my leg down for 8 straight months along with the PE that took me out for a length of time, for the first time in my life I put on 30 pounds and battled depression from the fatigue. I've not been someone that could slow down, I have a large family that holds my heart and I own a non profit that is laced with constant mission field work, therefore my days are go go go and I would not have it any other way. It has been more then a process to be forced to slow down to a point of molasses. I've not leaned on people very much in my life and I have learned the art of delegating and letting go in order to endure. I am hopeful that with the right care I will be back to running again yet running with a higher level of knowledge and awareness to keep up a proper pace. I have so much left to do and refuse to limit this gift of life.

I will keep everyone posted on the outcome of the scans and blood results.

Peace and Laughter to all of you,


3 Replies

Great news and thanks for the feedback. your story is a great learning curve that help is out there and a challenge at times, but here goes to some forward planning on a more normal setting for you. Best of luck with your new ventures. MaryF


Hi Becca, I congratulate you to the selftesting unit and the wise doctor to let you be on an INR of 3.0 - 3.5. I guess you aim for 3.5.

Have a wonderful life wherever you are and let us hear the result of the bloodtests.

Love from Kerstin


It can be quite a challange to accept and learn how to deal with an uncurable - albeit in our case a treatable -- disease.

And in my case, though APS may be uncurable, this site has certainly helped with my treatment.

Thanks for the update. Stay strong, and we're always here for sympathy and support!


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