Monday, November 16, 2009

Georgetown CFS Study: Unpleasant Surprises

To my readers: Thank you for all the comments so far on all my Georgetown posts. They have really helped to lift my spirits. I have been physically and emotionally overwhelmed, so all I can do at the moment is blog (and not respond). However, I promise I will respond when I get the mental energy, so please feel free to continue posting.

I am still in DC because the doctors asked me to postpone my original flight back home after my spinal leak and subsequent blood patch. I was supposed to fly back Sunday but changed the flight to Tuesday (tomorrow).

Well, it seems that lumbar punctures are not exactly my cup of tea. This weekend I started to develop low-grade fevers. In order, my temperature was 99.2 on Saturday and slowly increased to 99.4, 99.5, 99.7, 99.8, and reached 99.9 by this afternoon. (For my metric friends, 98.6 is normal.) That's when I called the research team.

They told me to come in to the hospital right then. When they took my temperature at the hospital, it had reached 100.0. Sheesh.

I'm too tired to explain everything, but basically the fever is possibly as a result of (from least to most serious) (a) my body working on absorbing the blood patch, (b) my body fighting off some sort of virus, or (c) my body fighting off some sort of infection from either the lumbar puncture or blood patch.

I'm also still experiencing very, very mild spinal headaches, so part of my instructions are to lie down and rest and also drink LOTS of caffeine to keep the symptoms at bay so that I don't have to undergo another blood patch. Trust me, I've consumed more bottles of Coca Cola in the past few days than I have all year. I do NOT want another blood patch. I never knew cola could be part of a prescription.

Needless to say, they are watching my progress and have asked me not to fly home until this weekend. My husband is flying home tomorrow to be with our cat, Callie, and to go back to work.

I also have to reiterate the appreciation I have for the entire hospital staff, especially Dr. James Baraniuk (the lead researcher and Associate Professor of Medicine at Georgetown Medical School), Dr. Murugan Ravindran (Post Doctoral Fellow), and Yin Zheng (Research Assistant and Future Doctor), for their amazing patience and compassion.

Every time Dr. Baraniuk met with me (and it was many times including this evening), he took his time to listen to everything I had to say including my concerns and questions and explained everything, making sure I understood what was being discussed. If I missed something and asked him to repeat it, he repeated it without a hint of frustration or hurridness. He exudes patience and a great sense of humor.

After my impromptu appointment this evening, I was advised not to fly back home tomorrow and to wait until this weekend. We need to watch my fever to see if it goes up or down.

I've changed my flight again but this time didn't have to pay as much for the new flight (I had to pay a nonrefundable $150 extra to change it last time). This time it was only about $30 extra (nonrefundable, of course). Yuck. It's all starting to add up. Thank goodness for the $400 research stipend that will pay for my total airfare costs.

All in all, despite the extra surprises (i.e., complications), I do not regret any of this experience. I do it all in the name of science with the hope that useful CFS research will result.

Today's Activities: bedrest and extra trip to hospital. Today's Most Annoying Symptoms: exhaustion, mild pain in back at site of lumbar puncture, mild pain in back at site of blood patch needle entry, general lower back pain from procedures, headache, low-grade fever of 100.0, generaly fevery feeling, nausea, dizziness, feeling weepy from the emotional strain.

Mood (10 is best): 4
Energy (10 is best):3 (after my naps)
Physical Discomfort (10 is worst): 6


cinderkeys said...

What a pain. I hope you feel better soon. At least you can say this round of suffering is useful for something -- it contributes to scientific knowledge. That may not be terribly comforting while you're still in pain, though. :/

Jo said...

Hang in! I wonder if any of this is related to the severe headache of a couple of weeks ago? A virus?

Take it easy . . .

Joanne said...

What a star you are to be so uncomplaining and to cope with all this for the greater good.

I do hope all is smooth from hereon and you soon recover.

You sound like you are in very capable hands.

Enjoy your extra time with your family.

upnorth said...

This isn't good at all! I wonder if other patients in the study have also had complications? (like is it a CFS/M.E. type reaction? I really really hope you start to improve soon....hang in there!

cfswarrior said...

I'm so sorry to hear about the complications. Hopefully they are doing lots of testing to figure out what's going on.

Sending you healing thoughts and wishing you a speedy recovery from this.

Renee said...

Wow. So sorry you have had these complications, and sure hope you heal quickly from the fever, etc.

Sue Jackson said...

Oh, I'm just now catching up - so sorry to hear about all you've been through!

Hopefully, the fever will come back down soon and you'll be on your way home.

You're a good person to do this for all the rest of us and all the other millions of people with CFS all over the world!!


alyson said...

Thank you for all the comments, everyone!

Hi cinderkeys - I agree with you. Despite all the complications, I have no regrets volunteering for this study because it is furthering CFS research.

Hi Jo - It's so complicated! But isn't it always complicated when it comes to this disease? I'll be blogging an update soon.

Hi Joanne - Thanks for the well wishes! And thank you for calling me "uncomplaining" because I feel like I've been complaining a lot lately!

Hi upnorth - At this point, I'm one of only 6 or 7 patients out of 90+ who have had to have a blood patch after the lumbar puncture. Furthermore, I seem to be the only patient (healthy or person with CFS) who has reported fevers to this extent (I still have a fever today). I guess I'm just "special." :\

Hi cfswarrior - Thank you for the healthy thoughts.

Hi Renee - Thanks for the well wishes!

Hi Sue - Unfortunately, I've still got the fever, which is not so great. On the upside, I'm back home with my husband and cat...and I get to sleep in my own bed, which is GREAT!