East Coast Medical Endeavors

This'll be a quickie (actually no, it's not now that I finished). Just wanted to update on my current status and surroundings. I'm sitting at my parent's mondo computer in York, Pennsylvania! Outside, it's sunny, humid, green, and there are little fluffy brown bunnies hopping across the backyard. I love being here. Never thought I would come out here for medical help, but hey, I never imagined any of these shenanigans happening!

Jake and I are here without our girls, and we miss them like crazy! Luckily, my mom is at home with them and Ari, Cami's other half, since Brittney and David are on vacation in Bermuda with their boys. So they're all having a blast, and that makes me happy. We love calling my mom and talking to Cami and hearing her enthusiastic, girly, energetic voice telling us about her day and assuring us that yes, she's being a good listener.

So it's kinda crazy how we ended up here. I'd been imagining and planning on going to the Mayo Clinic in Rochester, Minnesota. Jake and I worked like mad, collecting all my medical records from every doctor I've seen in the past 5 years, organizing them, scanning the huge ream of papers and copying them all to send a big book to the Mayo. We waited patiently for about a week, and then finally called them to see if they'd received my records and if they could work me in somewhere.

The lady handling our call, who sounded like a 20 yr old receptionist, got someone from the gastroenterology department on the line with our conference call. This is what she said: "Sooo we've looked over your records, and there's really nothing we can do for you that hasn't already been done." Silence. I was dumbfounded and deflated. Really?? That's it? That's the end all? "Really? That's the answer from the Mayo Clinic?" Ok, thanks. The secretary lady said "We could schedule you with a general doctor here for a consultation if you'd like." No thanks. Thanks anyways though.

So that was a huge let down. In the meantime, a day prior to that phone call, I'd gotten a call from a lady at Johns Hopkins who is an assistant for a gastroenterologist, Dr. Ellen Stein. She'd said Dr. Stein got an email from a colleague at Hopkins who's an eye doctor, who is friends with my eye doctor, Dr. Ambati, who's taken a real interest in my medical situation. She wanted to set up an appointment for me to see Dr. Stein either that week or the following week, but I was caught off guard and said "uhhh I need to talk it over with my husband and get back to you." I hadn't seriously considered Johns Hopkins. But after the Mayo shot us down, it seemed like this phone call from Hopkins had been an answer to prayer. I called her back the next day, and said yes I'd love to see the doctor, so here we are.

Jake and I flew out, my wonderful dad picked us up in Baltimore, and we had a weekend to just chill and have a little vacation. We went grocery shopping for all my special healthy foods, saw the Amazing Spiderman (loved it), went to church, picked blackberries, visited Pinchot Lake, had a lovely time.

On Tuesday, my dad drove Jake and I down to Lutherville, MD to meet with Dr. Stein. She's young, very friendly, educated, and interested in helping. We were there for about 2 hours, and although she's just as perplexed as all the other doctors, she has some ideas and ordered blood tests and a bunch of urine and stool samples. Fun stuff. She thinks I might still just have small bowel bacterial overgrowth, along with malnutrition and muscle loss in the bowel region, making it hard to "go". Her orders are for me to get tons of protein- lots of meat and rice, and to gain 1-2 lbs a week for the next 6 weeks. And continue with the tube feeding in that time as well. Then she wants me to come back and see her, and if I haven't improved, then she'll put me in the hospital on TPN and all that fun stuff. We'll try to avoid that!

We stayed overnight in a hotel in Lutherville, then early the next morning we met with Dr. Milea, in Infectious Diseases. He was very thorough, asked tons of questions, was very smart, and he concluded that he doesn't think it's something infectious. It's more in the gastro realm. Which we already knew, but it's nice to get other opinions and perspectives. He does want us to get a biopsy retested for Whipples Disease, which wasn't quite done right, so that we can rule that out for good. Dr. Stein said she might even want to do a small bowel endoscopy next week where I swallow a capsule with a teeny camera on it, and re-do the biopsy. Sounds adventurous.

I have an appt. to see a Hematologist (blood doctor) next week, since I have some issues with my blood. I'm also doing a rectal manommetry (tube up the bum...not the most fun thing to imagine), and a breath test for fructose/lactose intolerance and bacterial overgrowth testing. I had to do 4 stool samples and turn them into the lab yesterday. That's probably one of the nastiest things to ever have to do in one's life...scoop poop into a little plastic container, stir it around with a solution and shake to mix. *gag* I also have to collect all my urine over 24 hours into a big orange jug, and do it twice for 2 different tests. So I'll be sticking close to home.

Still bloated. Still tube feeding. Still enjoying not having to do my hair. Glad Jake's here with me. Thankful my dad is here and that we can stay in the home I love so much. Thankful there are family and friends all around my girls, willing and wanting to help. Hopeful. Praying. Trying to stay positive. Feeling loved.