Sunday, November 15, 2009

Georgetown CFS Study: Hospital Experience

I'm still lying on my back at my parents' house to aid with the healing process. It is painful to sit or stand for more than brief periods of time -- probably because of the second puncture. (My very healthy husband is up and walking around just fine today with only minor aches.)

Because I've been lying down all day for the past few days, I don't have many options for activities. I haven't been in the mood for TV lately (although I think I'll try to catch Home Makeover Extreme Edition if it's on tonight). I'm mentally too tired to read, and talking a lot is exhausting. I've pretty much spent most of my waking hours thinking.

I've got a bunch of thoughts running around in my mind and feel the need to get them all out, so this post is going to be a hodge-podge in no particular order.

The entire Georgetown University Hospital medical staff involved in this study was INCREDIBLE. Words cannot express how much grattitude I feel toward them. Every single one of the doctors, nurses, and research assistants took their time to answer any and all questions I had. They treated me with warmth and compassion.

Even when I began to have complications from the lumbar puncture and required a blood patch, they did not act as if I were throwing a wrench into their plans (even though I know I forced all of them to work late). Rather, they treated me with care and concern.

When I cried from pain, they spoke calming words to me and assured me that the pain would pass soon.

I want to especially recognize by name 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 compassion. I've encountered so many doctors and healthcare professionals who seriously lack compassion and understanding when it comes to working with patients with CFIDS.

The anesthesiologist (whose name I can't remember) was so kind and reassuring when she was explaining the blood patch procedure. She talked me through the entire procedure while she was doing it and made it less scary.

Everyone treated me with dignity. I had to go to the bathroom immediately after the lumbar puncture (even though I went before the procedure) but was not allowed to get up out of the bed. A nurse brought in a bedpan for me to relieve myself, lifted my butt, put it under me, and pulled my pants and underwear down. I was very embarrassed by this, but she acted like she did this every day (which may actually be true). In the end, I had performance anxiety and was not able to go, but I appreciated her kind attitude.

Going over my complete medical history with Dr. Baraniuk was interesting. All the little quirks I have that I didn't think much about are apparently pretty common in CFS patients. For example: I am constantly out of breath. Sometimes I get the sensation that my brain has forgotten to breathe properly and I have to consciously make the effort to breathe in and breathe out.

Another example is the fact that I easily get disoriented in the dark when I'm going from the bed to the bathroom and vice versa. I also have trouble going up and down stairs, occasionally missing a step because I "forgot" where I was on the steps.

The most profound part of my entire experience was that Dr. Baraniuk determined that I "severe" case of CFS...and he's seen A LOT of CFS patients. Wow. I suppose I've known it all along, but have been in complete denial. I have just been pushing through and "passing" as a healthy person.

My job has exhausted me to the point that I worry that I am concerned that I am only making myself sicker or at least preventing myself from getting better. At this point, I am reevaluating my life and considering my next steps. I'll write about my thoughts in a future post.

Needless to say, this entire experience has been exhausting and eye-opening.

Today's Activities: bedrest. Today's Most Annoying Symptoms: exhaustion, pain in back at site of lumbar puncture, pain in back at site of blood patch needle entry, general lower back pain from procedures, headache, low-grade fever of 99.4, nausea, crying from emotion of it all.

Mood (10 is best): 4

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


Sylvia said...

Oh dear, if your condition is severe I must be on death's door! ;) I suppose the doctor there only sees patients well enough for travel and perhaps has a skewed view of things. That sort of thing has definitely hampered proper research in the past, but hopefully whatever they discover from more functional patients will help the more housebound ones too. Thank you for participating in the research!

upnorth said...

I'm so sorry you're not well off at present. I hope your recovery is speedy....hang in there and thanks again for being part of this study.

Lori said...

I'm sorry to hear you're not feeling well. Hopefully this won't take to long to recover from.

I was shocked to hear about the breathing thing. My daughter, who has CFS, has asked me several times that she sometimes has to think about breathing and when she does it's very annoying and hard to breathe. I just dismissed it and told her that no matter what, she'll breathe. I always thought that was odd, but didn't make a connection at all.

Thanks for all of the great info.

And you shall lead... A life uncommon said...

just found your blog. I live in md and have cfids, do you have a link to the study info?

hope you get some REFRESHING rest and are healing well.

alyson said...

Thanks for all the comments!

Hi Sylvia! He's been studying CFS closely for over 10 years, so I'm pretty sure he's seen the range of CFS patients. I would think most of the patients he's seen were worse off than I was at the time I checked into the hospital for the research. Perhaps, he'd call them "very severe"...? ;)

Unfortunately, I have had an extreme relapse and can no longer work at this time. I suppose I've made it into the "very severe" category now. I will be blogging on this soon.

Hi upnorth! Thanks for the well wishes.

Hi Lori! I was also shocked to find out that my feeling out of breath and feeling like my brain occasionally forgets how to breathe was something the good doc has seen before in CFS patients. It was a relief that it wasn't imagining it all.

Hi And you shall lead... A life uncommon! Thanks for visiting my blog. I've posted the research info on my November 20 post. They are really in need of more healthy volunteers, so I'm not sure if they're actively recruiting more CFS patients...but it can't hurt to contact them anyway!

Maybe if you can convince a healthy friend or family member to participate in the study with you, the research team might be able to take you sooner, perhaps?