Diagnosed in 1995

Diagnosed in 1995

Hi, I'm 77fluffy05 (AKA Diane). I live in the US in Burlington, North Carolina.

I would like to add that I am 59 years old and have a 35 year old son. Because of his divorce he now lives with me again. I love having someone around. I use an electric chair to get around in, they won't let me drive. I lost my husband to pancreatic cancer in 2005. We hope to someday move back to San Diego to be near family, etc.

I was diagnosed in San Diego, California where I lived for many many years. I was seen for outpatient procedure on March 8, 1995, to remove what they thought were a couple of blood clots in my left leg. I was to be discharged later that day. Well, that didn't quite happen that way. They found more than 5 clots and couldn't get them out on the same day. So they left the angioplasty line in and sent me to the ICU for the night. Next day thay were unable to remove them as by then my platetes came in at 1,200,000. Yes, that's the right number!!!!!! They ended up doing open surgery on leg and then sent me to hyperbaric chamber for the next 2 weeks twice a day. What a nightmare that was. Ended up with tubes in my ears for ear drum ruptures. Well, from there we went through many surgeries and procedures to try an figure out what was wrong with me. Started having infections and that just took over. After the 3rd revision of my stump, I had lost my ankle. They sent me home on March 31, 1995, thinking finally......

Next day woke up with the worst headache of my life. I tried rubbing my eyes they hurt so bad and when I took my hands away from my face I didn't have any vision out of my right eye. Back to the hospital...Stroke!!!!! Middle Cerebral artery and some veins had clots. It was a resident who was really interested in my case that was my angel. She would come in at night and spend that time with me looking through her computer. She came up with Hughes!!!!! Not APS but Hughes, I am very proud to say. As some of the people I was in contact here said it was discovered about the same time in both places. Hogwash!!!!! So that was April 1st when I was readmitted and finally went home on July 9,1995. Four months is way to long to be in the hospital but that's the way it was. OK, to be honest I was sent home twice, and returned the following day both times. Infections can become a real nightmare.

Now, I live in Burlington, NC and in 1998 had a below the knee revision due to

neuromas. Stump pain has been my terrible spot.

But.....it has a great ending as the weekend that was so bad for me I discovered Organic coconut oil works on the skin for pain. I also took 3 extra tablets orally. I'm nothing if not a health nut at this point. I take more vitamins, minerals, etc. than I take other meds for. So now when I get the feeling my stump pain is back I shut down my computer head to the bedroom and use my coconut oil & pills. It has been working now for almost 2 weeks..

No, I'm not crazy, actually I feel like the luckiest person in the world because I am still alive, which considering what I've been through is pretty darn good.

I've since had 2 small strokes & 1 major due to coumadin being high. Was sent to UNC Chapel Hill for brain surgery but they were able to avoid it. That's my story. Oh, I could add more but it's already long enough. I hope you enjoyed my story, sorry it took me so long to write it out. If any of you ever have any questions I am open to any & all!!!!!! You all have a great day!!!!!!

3 Replies

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  • hi diane, just read your story , wow! you've certainly been through it! I hope things are ok with you. thnks for sharing.

    regards, sandra

  • Yes I have been through it, but my attitude is I am just happy to still be alive! I need to input all my vitamins and supplements but check out the question I asked about supplements. I actually think these have helped more than anything! Thanks for reading my blog.

  • sandra99b,

    Hi go to this site and hughes-syndrome.healthunloc... my questionon Vitamins & Sipp;ements

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