Some happy news!
Posted 19 July 2011 - 12:57 PM
I know I haven't been on in awhile... But I finally have some happy news!
First I have to get through all of the bad stuff that has happened because it makes me appreciate this all the more.
A lot of you know that things pretty much started to go down the BAD_WORDter back in Feb. when I ended up being admitted via ambulance due to non stop siezing. I was eventually diagnosed with "pseudotumor cerebri" which means that for some reason my body is making too much spinal fluid sending my head pressure through the roof (at my first lumbar puncture it was 60 cm H20 and it should be less than 15 cm H20....)... This eventually started to cause problems such as intermittent blindness and constant vomitting (not to mention an insane headache)...
I saw my (former) chiari surgeon May 16 and he tried to say that I was a) either having an allergic reaction to my dilaudid pump as it goes (went) into my spine or I had a secret case of celiac's (gluten allergy) and that gluten was the cause of all of this (even though I eat very little grains and I have had so many work ups for celiac's and I don't have the gluten anti body, nor do my villi in my intestine look eroded). In either case he wanted to see me back in 4-6 weeks and see if my pressure had gone down any (I was BAD_WORD!), THEN we could talk about a lumbar drain (I didn't even WANT an LP shunt but rather a VP shunt) if necessary. At that point I was getting upwards of 3 lumbar punctures a week (my mom counted how many I had from March-May 18 and my grand total is just under 50).
My mind was made up to see a different neurosurgeon for a second opinion (as I was getting really sick from this hypertension). This is where destiny steps in... I called on May 17 for an appointment and got in to see the marvalous Dr. Sean Markey on May 19 as someone had called to cancel literally right before I called for an appointment (otherwise his first available date was July 13!!). I saw Dr. M and he pointed out that my ventricles were large (aka hydrocephalus) and that due to the vision issues this was an emergency. I was admitted to the hospital and the shunt was in by 8:30 am on Sat. I was discharged on Monday with a PICC line (an IV line that is more permanent) as I had a nasty kidney infection and required IV antibiotics.
It was pretty much 1 step forward 10 steps back it seemed. I got home and after not even 24 hours my sis found me on my bed not breathing... It's been concluded that I had a seizure due to my shunt over draining (my ventricles had closed up). Also b/c of the mega abx doses I had recievd I ended up with a fungal infection in my blood. My mom also began to notice that I was turning blue again and my O2 levels were only in the 70s (should be above 90%)... On June 7 I was at the infusion center when I went into what I believe was an anoxic seizure (seizure due to not enough O2 getting to the old noggin'). All I remember is hearing the rapid response team freaking out because my levels wouldn't go up. Went to the ER and the nurse noticed decreased breath sounds in my right lower lung so I was sent for an X ray to check for pneumonia. The x ray was clear and the ER was going to discharge me home when my mom mentioned her concern about m all of the sudden needing O2 again. The doc tried to say it was because I take dilaudid but my mom pointed out to him that I have been on opiod treatment for pain for 10 years. He decided to do a chest CT and it was found that I had several pulmonary embolisms (blood clots).
I spent all of June in the hospital before being discharged to a nursing home for a couple of days (bcause my clotting levels weren't right yet and the docs didn't want to send me home on lovenox injections because of the infection risk). I was to be discharged home on June 14 but I spiked a fever and since you don't BAD_WORD with fever anytime you have something implanted in your head (or you have a central line or a pain pump) a full fever work up was done and I had another nasty blood infection.
But now for the happy news....
I've been home since July 6 and haven't had to use my wheelchair since. I've walked around the grocery store, super target, walgreens (I've been unable to walk since Oct. 2006)... It. Feels. Amazing! I'm a bit peeved with my former nsg for never mentioning that I have hydro but that's the past. I just saw Dr. Markey last Thurs and he was amazed with how well I am doing. When I saw him the first time in his office I was in a wheelchair and neck brace with a barf bag trying to decide which of the 3 docs my vision was giving me was the REAL one (could still use the brace but it cuts off the tubing to my shunt, so I'd rather deal with a floppy unstable head and neck for now).
I want to thank you all for your prayers and continued support the past couple of years (I've been sick since March 10, 2001 but didn't join until 2004). I'm not out of the woods yet (am still considered high risk for a shunt infection which wouldn't be good... And these things tend to clog up so more brain surgery is likely in my future) and I have six months of coumadin (unless it turns out that I have an autoimmune disorder that causes me to hypercouagulate.... Then it's for life) before I can go back to the OR to have my pump hooked back up. And I will ALWAYS have BAD_WORD to deal with but I'm okay with that (I've gone through the grief stages and mourned my old life and now accept the plate that I've been given).
It feels so good to have a sampling of the things that most people take for granted (walking, reading, eating, being able to stay awake....). Dr. Markey said that I have to go out there and be the best damned pyschologist possible or he's going to find me.
Much love and happiness
Posted 21 July 2011 - 11:35 AM
Take my hand and we'll go riding through the sunshine from above
Posted 23 July 2011 - 07:44 PM
Today I went to the movies and walked the whole mall.... There was alot of sitting and dizziness and now my feet are pretty swollen from the blood pooling but dammit it was worth it. That's the most I've walked since Oct. 2006. The goal for August is to start walking on the treadmilll and to get into PT to recondition and build up muscle mass (since my viens are defective my body has to rely on my muscles to bring blood back to my heart so it can reach my brain.)
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