Sticky Blood-Hughes Syndrome Support
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I'm back but oh so tired of it all

I am so tired and just now realize how much involvement that this illness causes my entire body. I recently, and again since December have spent more time in the hospital then home. I have read so much on APS and it saddens me that I believe I know more and still finding out more about this illness then my own GP. Earlier this month, I was diagnosed with stage 3B-moderate Chronic Kidney Disease, then I became so exhausted I couldn't move out of my bed, test results Epstein Barr Mono. I woke up one morning with severe abdominal pain and nausea and vomitting. I was admitted to the hospital and finally after 7 days of nothing by mouth they decided to do a colonoscopy and endoscopy, this was because they saw in the CT scans that 2 loops of my small intestine was swollen and also a small bowel obstruction. To do this they had to lower my pt/inr so tyhe DR ordered 2 untits of Frozen Fresh Plasma. I was given the 1st unit with no problems, the 2nd one when they started pumping it in..I became very itchy and broke out with hives. They stopped it right away and called the DR. They gave me some mds in the IV to stop the reaction, but these weren't normal hives, they were hives but also deep purple bruising in them. I still needed my INR lowered so the DR ordered me to be premedicated and given another unit. It worked fine. 8 Days ago I had both tests done and everything had resolved with resting my gut so they discharged me. I was so happy to go home that I even forgot as they had to bridge back with Lovenox shots and my coumadin. My discharge papers only stated to resume ll my normal meds. Now, going back less then a month ago...I started having such headaches (severe) and I am not a headachy person, started shaking and felt very unwell, my hubby to me to the local ER. My blood pressure was very hi in triage, but dr that was there had read my chart and saw I was recently diagnosed with Epstein Barr Mono, so said he felt this was all due to the virus and sent me on my way. I saw my own GP the following day. He increased my Lisinopril for my blood pressure as it was 186/100 in his office. Sorry, now back to when I was discharged for GI problem. That was 8 days ago and 3 days later I went upstairs to use the bathroom, when I got into the room I felt so shaky and instant excruciating pain shot up in my entire head, I dropped down onto the toilet seat and just slummped. A few minutes later..I think, the pain was still there but I was able to get up and go slowly downstairs to where my husband was. He looked at me and asked what happened, I told him I didnt fel well and needed to lay down, this was noontime. He gave me cold compresses for my head and I tried to just relax and calm down. He said he had to go to the bank, I told him plese don't go, I don't want to be alone, as I truthfully felt I was going to die and didnt want to be alone. I refused to go to the ER as I felt that some there had looked at me like a "frequent flyer". At 5 oclock, the pain was really unbearable, nausea and vomitting had set in and made it worse, my daughter came and took my BP, it was 216/116, They wanted to call an ambulance but I refused. We went to the ER, on arrival it was well over 200 and they put me in a room right away. DR came in and started IV with pain meds and zofran for the nausea and vomitting. I went for a CT and the dr came in and said he was transporting me to a larger hospital as I was having a stroke. At Hartford hospital I had another CT and it was found that I now had 2 areas of infarct (2 months ago I had only 1) but neither looked like a stroke was happening then. I then had an MRI and the DR came in and said they now know what was happening as I vision was really bad, balance was weigh off, this pain in the head was so excruciating that I refused to call it a headache. I was diagnosed with PRES-Posterior reversible encephalopathy syndrome. I, in fact had a TIA,..all MRI's and CT scans confirm 2 infarcts, some scattered something or other and now this which is swelling and fluid with a little burst at the brain stem which effects vision, balance and other issues. Its called reversible, but not always. Due to Lupus involvement and Antiphospholipid syndrome all my auto-immune illnesses and lowered kidney function this can be fatal. After doing his research, the head Neurologist confirmed that this syndrome had only been diagnosed since 1999 in people and it in fact is not always reverable, so there is some study now to change its name. He said its very rare and I am the 1st patient he has ever seen with it. On the hospital floor, everyone including charge nurses, Physical and Occupational therapists were all googling this as no one had ever heard of it. Only have been rough since December when I was hospitalized with Severe respiratory distress, then had that major abdominal bleed which caused a large rectus sheath hematoma. I just don't know anymore, how much more can I take its so dpressing, constantly something. Now back on 2 lovenox shots a day and they increased my coumadin as today my PT/INR was only 1.6 and was 1.5 on wednesday when I was discharged. Not even close to theraputic. Once again....I am so sorry this is so lengthy, but I felt I needed to explain it all so you get a good picture of what has been happening. Has anyone else gone through so much, besides the PE's, DVTs..etc this is all weighing so hard on me emotionally. Thank you all for letting me rant.

3 Replies

Glad to have you back. But sorry you are so ill. You really have been through the mill. My sister keeps get more problems than answers with APS. Now her larynx is so swollen her throat closes and throat dr. Seems afraid to touch her. Seems to me they need to find a way to make people's immune systems to stop attacking your body. I don't know the answers but hopefully SOON they will come up with something better. Meanwhile try to keep the faith easier said than done. I sincerely hope you do feel better soon. It's been a long haul for you. Hopefully there's some light at the end of the tunnel. Stay well god bless you


Hi there, sorry to hear about your troubles, and thank you for taking the trouble to write it all down for us, we can all learn from each other, on top of the invaluable support on here, keep as well as you can. MaryF


I'm exhausted just reading about what happened to you! The problem with ED's is that they think you are looking for drugs or suffer from hypochondria!! Hard when most of them haven't heard of APS or how to treat it. I do hope things improve for you soon.

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