Looking at the discharge report again I see they listed labs for 9/19 thru 9/24 I was there from sunday until saturday. However there are no ranges specified, I must have got a sense of what is normal from googling after seeing (L) underneath all the values except ‘Platelets, automated count’ which has (H) for every single day.
It was a rough ride, they had me pretty doped up in the ICU, questions such as ‘Who is the president’ and ‘What YEAR is it’ were very tough questions to answer. Then my right hand failed and crashed into everything, I would drop my iphone 5 times in a row attempting to pick it up. Forget reaching around in the bathroom and when washing up it would crash into the sink - I could not control it. I was horrified. I clutched a fork/spoon/knife like an ape would.
The Heparin made it go away.
I could not stand all the electrodes telemetry and alarms, the ICU made me quite frustrated then in walked my ex who became my personal assistant for the week. Odd.
I was ready to be discharged Friday but they said ‘one more day’. Well that night when all the doctors had gone home for the weekend it happened again - my skull felt like an elephant was standing on it, the cranial pressure was unbearable yet they would not give me anything but tylenol which did exactly nothing. My ex kept calling and I said I did not expect to make it this must be it. She said she loved me so I gave her an automatic response in kind. They took me down into the basement again for another spinal tap, CT scan, MRI, MRV. They said there was nothing new, nothing happened. They phoned the doctor and he approved vicodin and I immediately projectile vomitted which is how this started on Sunday, no nausea which was an instant clue to me that this was neurological and I ended up driving myself to the ER 24 hours after it began. Apparently this diagnosis is often done on cadaver at autopsy.
Your mention of the vascular system swallowing the pressure reminded me of that Friday night and when I asked to be checked it came back really high 168/124 and I am normally 106/76 at rest and sometimes 120/90.
Upon leaving each new day at home I would awaken and have my right side from lip to ankle go numb for 10 minutes and completely freak me out. I also would awaken with a terrible headache.
I got back on track and started a new job this week, hospital is calling now for their money but I already got them to ‘adjust’ it by $39,881.00 and the consulting agency co-insurance picked up a good chunk leaving me with an exhausted plan and a 7k bill.
The Neurologist said it was from 3 things: 1) I have an inflammatory condition ( ulcerative colitis ) 2) I was on high dose prednisone to combat a 2nd flare this year 3) I allowed myself to become dehydrated - he said to drink water constantly and pee clear.
How did all of this happen ?
Perhaps I angered the Gods, not sure but I was not taking care of myself and I cheated. But I dont think its all my fault.
Pre-August I hit a personal best of 200 lbs and I was BUFF. I am 5’9" having shrunk an inch and have small bones so 200 bested my 190 some 15 years ago. I drove to the springs to pickup a laptop for a new gig. Next day I had a sudden brutal flare. I bled a lot and went back on prednisone which worked in May this year only it did nothing this time. I doubled it to 100 mg per day until my GI doc said go back to 50 mg. The catabolic prednisone dropped my 200 lbs to 160 in just 4 weeks. I was pissed and TRT was not going to cut it so I went anabolic, but it did not make a difference so I trimmed that back down too. The prednisone converts muscle to glucose and above 30mg per day revs up your brain so I was obsessed with a git-r-done attitude to prepare the house and the new backyard for the block party I was catering. Putting some extra fist sized meatballs into the fridge as the party winded down I felt pain in the back of the head ( Sagittal Sinus Thrombosis ) and figured the 2 sick kids at the party had menengitis and gave it to me. 24 hours later I knew I was in trouble. Even with me shooting north of TRT levels I still dont get it - all year my hermaticrit has been low never high. Low hemoglobin low RBC. I have never understood it.
Out of the hospital and returning the laptop I stayed at the same resort with my daughter and when I tried to hike up 8 stories to the lodge for the breakfast and dinner buffets I had to STOP - I was out of breath. After reviewing the labs and the fact I was anemic upon admission as well as discharge I began taking iron/vitamin C supplements each morning which helped right away.
I have next to no body fat, my thighs have zero but are WAY more vascular than ever before. Even as a kid the other kids noticed how vascular my chest area was, NOW its that way everywhere and my daughter quickly commented that I still had my muscle at a puny 165. My high school / college girlfriend flew out on the stroke ( Thrombosis ) news and she said my arms were never as vascular as they are now and just shook her head. I am on coumadin blood thinners and will NEVER ever take prednisone again. It would seem to me being more vascular would reduce pressure but I read its just a measure of how low your body fat is.
Yet I feel I am missing part of the picture here - it just does not quite add up.
Thank God I started a good job this week, I had been bombing interviews, I was having trouble recalling all the technical details of the work I have done over the last 2 decades. Taking 2.5 months off this summer did not help and the pain meds probably did not either but I must say my gut loves vicodin, thank God its doing well or I would have to halt the blood thinner and the docs say it is keeping me alive. 3-6 months of coumadin which interestingly is rat poison, no joke. If I stroke again its coumadin for LIFE.
I just want 10 more good years to finish raising my daughter then the grim reaper can harvest me. At this rate I dont see any reason to sock my money away for retirement, I wont last like my parents still kicking and doing great in their 70’s. OTOH I had a few years when I got to COLO that my joints failed, knee surgery then both shoulders, perhaps this too will pass.
This is the 3rd hospital admission my daughter has lived through including one that took me all the way down to 130 lbs and a foot in the grave and so she said:
“Nothing seems to kill you”
With UC, you may be iron deficient; iron deficiency alone may cause a rise in platelet count. Dehydration must be severe to do so.
I presume you are man, and that your docs considered anticardiolipin disease as a complication of UC. Sagittal sinus thrombosis in men is a rare event, even in men with UC. Prednisone is not implicated alone. In women, the most common co-factor is one of 2 genetic changes–MTHFR or Prothrombin G20210A (Factor V Leiden is a much less common cause)–and oral contraceptive use.
Considering these genetic co-factors is important to your treatment, your prognosis, prevention of other vascular events, and for your daughter.