Breath

So I was in the hospital this weekend (Fri 1/9/09 & 1/10/09) at the Cleveland Clinic. I really don't want to write anything else or elaborate but I must write something so I'll remember. (I paused for about an hr and just came back.) I apologise for the grammar, I'm still a little out of sorts.

I was having a debilitating build-up of head pressure, not "headaches", for 3 days following the LP & (deleted a huge section, trying to stay focused) I knew something wasn't right. The last straw was that I had a really bad episode on Friday morning. (I just deleted another entire section.)

* Rewind for just a moment * After the first LP, I immediately had a headache. I didn't want to sit up because it hurt. When it was time to leave, the nurse didn't ask how I was feeling nor did she give me any LP info to take home. I felt too crappy to ask and Mike was too busy trying to stay calm.

* Rewind a little bit more * I had scheduled a colposcopy/biopsy with my gyno on Friday, January 9 (which I was planning on driving myself to since the doctors all said I should be fine after the LP & that sometimes headaches do occur but no big deal.)

So - Friday morning I made myself get up, take a painful shower, and call my Primary Care doctor (at Kaiser) to let them know about all this increasing pressure since the LP - they said take Tylenol or go the the ER if the "headache" was severe. Then I called my Neuro-Oncologist at Cleve Clinic. I left a message for Dr Tekautz - Mary Murphy RN returned my call 1/9/09 & left a message (as I was then in the ER) said she spoke to Dr. Tekautz - "Dr Tekautz" said she doesn't know what was wrong - to take Tylenol, or I could call my Primary Care Dr or go to ER since this would not be related to my lumbar puncture since I was calling 3 days after the LP and this wouldn't have to do with my lesions/tumors (I have this message SAVED still on my voice mail.) Like I said before I was never given info on what to do if the LP wasn't ok or a list of "bad" symptoms so what the heck :0<

I decided to try to keep my appt that was scheduled for 10:30 AM because this appointment was important. So I tilted my drivers seat back a little in hope it might help the pain not get worse and left. While driving to the gyno office out of no where I felt like I was going to throw up. My face got hot and sweaty, the nausea was overwhelming. Immediately following the nausea my head went from KILLING ME (Pain 9 out of 10) to I honestly thought I was dying (Pain 107 out of 10) from the pressure in my "frontal lobe" which spiked for NO REASON while I was driving. Nothing had happened or changed to make the pain/pressure rocket up like that. My neck was getting stiff, jaw getting stiff, I didn't want to move my head cause of the pain. And the pressure was continuing to climb... making me cry uncontrollably. I made it to the gyno office parking lot but called and said I couldn't make it because I had to go to the ER.

I thought I was seriously about to have an aneurysm. It hurt to move at all. I knew there was something horribly wrong. I made it back home and my Mom took me right away to the Cleveland Clinic's ER as that's where my recent HEAD records were. On the way there, I called the Above the Barre as I was to coach that weekend letting them know I can't as I was driving to the ER.

When I arrived they got me in right away and looked up my chart. They got me in for a Head CT, took blood, etc., hooked me up to an IV & gave me some pain meds. They asked me if I was currently taking medicines & I stated just ProAir when needed, no Tylenol or Aspirin. The doctors were so nice and really listened to me!!!

They said they wanted to see if I had had an aneurysm ( ... ) or was bleeding in the brain. To do so they needed to do another LP to rule out blood in the brain. They would need to do this in the same place as the last one. My first reaction was - stay away from me, that's why I'm here now because of the last one!!! But Mom talked me into getting the procedure done - horrific...

The results from the CT and blood work came back - blood was normal and CT was like the last one I had. The doctor doing the LP said, while performing the LP, that my fluid pressure was low & that I had a leak from the first LP which was probably causing the pressure. For the leak they put me on a caffeine drip, if that didn't close it they were going to do a blood patch. Fortunately the drip worked - NO MORE HEAD PAIN PRESSURE!!!!!! Thank you CC ER Doctors!!! There was no blood was in the 2nd LP & the other 2nd LP tests came back ok - no infections! YAY!

They do not know what happened to me in the car though. They think it might have been a small aneurysm or I was about to have an aneurysm. They don't know. My symptoms in the car lead to these theories.

They did say to follow up with my doctor's' on Monday, they gave me release/info papers (YAY) to take home and said if this happens again not to wait but to come in straight away. The one thing they said was since my pressure was high from the first LP that my pressure would most likely increase again. But until it does I will enjoy the peace I have.

On Monday 1/12/09 I left messages with Primary Care & Neuro Docs. Primary Dr returned call at 8:00 AM 1/13/09. He was not happy to hear that my Neuro Dr's nurse left a message on Fri 1/9/09 stating to take Tylenol or to call my Primary Care or go to ER since this would not be related to my lumbar puncture since I was calling 3 days after the fact. He said I should have called HER as her office did the LP and is scheduling all the BRAIN tests. He said he was going to call her office at 8:30 AM 1/13/09 and see what was going on as I was told the wrong info and no one was returning my calls (for test results or to schedule my throid biopsy which I was told was to be STAT) from her office.

Primary Care called me back at 8:51 AM 1/13/09. He spoke to Neuro Dr - Dr Tekautz. She wasn't aware of any of the problems. She would call me today with my results and to speak with me about where I stand. That would be refreshing and great to have a plan so I can get on with my life!!!

So hence forth I am focusing on breath, on 1 at a time.

I will write when I know more. I feel light years better then the way I did this past week.



Noah Update -

He's doing better. He does not know about this weekend in the ER. He just stayed with Mike and I called him from my cell acting like all was fine and that I just need some time to rest.

From time to time he still breaks down asking if I'm going to die. I calmly say no - God has a plan and we have to trust and have faith. But we're all going to die someday just like caterpillars changing to butterflies, people don't die - they change into another form. But I said, I not dying now, so don't you worry - I'm gonna be here for a LONG while!!!

About You -

Thank you for all your prayers and love. I really do appreciate it even if I forget to tell you... To everyone/anyone, please feel free to leave me a message, comment, idea, a message about something I forgot, etc. This will help me to keep things accurate. Thanks again!

And it continues...

Hello again...

I had the ultrasound of my thyroid done, haven't gotten the results back but they want to schedule a biopsy asap (date TBD). I got the result of my lady's test and I do not have the HPV virus - awesome - but I do have abnormal cells on my cervix. I'm going to the gyno-oncologist tomorrow to have a colposcopy and cervix biopsy.

I had the lumbar puncture on Tuesday and I DO NOT recommend it to anyone!!! To learn more - call me someday and I'll explain. They did say my cerebral spinal fluid pressure is high but color is clear which is good. This was the only time in my life that I got praise from a doctor for bringing a large Dr. Pepper to drink!

Not much else to write except my back is killing me to sit up and the pressure in my head keeps changing and is also killing me when upright. I am going to lay down now - until tomorrows appointment.

Wish me luck and say some prayers!

Joi