Our house is just under 3 hours or so from Baltimore - at least to this location in Baltimore. Her appointment was at 8AM, meaning departure time was at 4:15AM. In the end, we actually left closer to 4:30AM after we got ourselves situated in the car before leaving on our journey. Colleen and I are night owls, and I often don't fall asleep before 4AM, never mind waking up at 3:30AM for a trip to a place we have never been before. Colleen says she barely got an hour of sleep - I likely got 2-3, if I was lucky.
The best part about this trip is the ease - getting to Baltimore requires no special instructions beyond getting on Route 95 and just driving...and driving...and driving. Johns Hopkins is right off of an exit - no twisty roads to navigate. You get off the exit, you are pretty much there.
The facility itself is impressive - it is modern, it is clean, and the people are beyond friendly. I even asked Colleen if the staff there is paid to be friendly. Not only did a woman ask us if we were lost trying to find the reception desk after seeing the doctor, she even walked us there! What is that all about? The receptionists are all nice, the nurses don't act as if they would rather be elsewhere, the doctors are personable. It was like we drove into some sort of alternate universe on our way to the hospital. We have not, in our journey, met up with a nicer set of people.
Colleen was checked in without a hassle, and saw her first nurse at around 8:05. She has a thankless type of job. Take your temperature, your weight, your blood pressure, enter information into the computer. She sat longer with Colleen than most of her DOCTORS to date did. That was amazing to me at least - the doctor would be armed with information before he even walked into the room. In Philly, Colleen had to continuously repeat her medical history to the doctor every time she went.
She next saw a nurse practicioner, who did a remarkable job of talking to Colleen about her condition. Seriously, this young lady knew more about gastrointestinal conditions than some of the "experts" we have seen. She was thorough, listened to everything Colleen had to say, allowed Colleen to ask questions, didn't brush off any of Colleen's concerns, and even knew of treatments that Colleen had yet to try. This was no standard nurse coming in to ask the basics; if the appointment ended with her, we probably would have been satisfied - that is how good she was.
After a good 30 minutes with her, she took all of the information she gathered and discussed it with Dr. O'Brien-Clarke. This was BEFORE the doctor even walked into the room. This is how a hospital should be run - let the experts walk into the room armed with all of the information in hand. The doctor should walk in with a general idea of what he is going to do or recommend before he even talks to you. This way, he isn't wasting time asking you a million questions about your history - he can spend the 30-45 minutes with you discussing your condition, what he recommends, answer any questions you have, etc. I can't say enough about how professionally run this operation is. I would recommend O'Brien-Clarke to anyone with a gastrointestinal/mobility issue - that is how impressed we were with the first visit.
As for Colleen, there are other treatments she can try and other tests she can have run. Her next big test will be an endoscopy with an ultrasound component, which she has never had before. It is an outpatient procedure in Baltimore. We don't yet have a date for that. For now, she is going to try a nerve pain drug that is typically used for other conditions but has shown to help some with conditions similar to Colleen - the drug itself is Lyrica, though one potential issue we ran into is that there may have been a mixup between the doctor and the pharmacy, as Colleen actually has a different drug in her possession right now. It is possible also that we misunderstood which drug he wanted to start Colleen on first, as there are a few she can potentially take. One class of drugs has similar properties to other drugs Colleen has taken but have shown to have lesser side effects.
Not once did this doctor suggest to Colleen that this is in her head. Not once did we hear that from anyone today. The bedside manner of this doctor and his nurse practitioner was just amazing - Colleen, who is an anxious person, was so at ease that I didn't even need to mutter a word. She had it all under control. And the credit for that goes to her (of course) but also the the way the staff treated her and made her feel as if she was a person, not just a name on a medical chart.
He is also a progressive doctor who isn't afraid of alternate treatments - they even have a person who does acupuncture on site, and have a specific protocol they are willing to share with anyone local to us to help treat Colleen. Not being afraid to think outside the box is a welcome sight.
So, do we have answers for you today? No. But we weren't expecting a miracle - we were expecting a fresh start from a new doctor, and that is what we got, plus much more. You can just tell this doctor doesn't just read from a textbook - he studies this stuff, gets involved in trying to find new treatments, etc. There is even ongoing medical trials going on for some patients that he made us aware of, but we aren't yet going down that path. All of this is stuff any "expert" should know, yet this is the first doctor who has brought it up to us.
I wish he was closer - not because I hate the drive, but because if he was closer, we likely would have seen him much sooner in our journey.
Oh, and as I told Colleen on the drive home, today marked a record for me: longest distance I have ever personally driven. I am also happy to report that Colleen drove the entire way home, which can be a challenge for anyone who is very sick.
As one more aside, I created an iPod playlist for the entire round trip. I mixed up a bunch of my favorites (ok, mostly Alanis and Christina Perri) with a bunch of songs I thought Colleen liked. As it turned out, I am not sure which Madonna songs (Colleen's favorite artist of all-time) are her favorites. I think I picked two out of a dozen or so that she said she would have chosen if she made the playlist. Just remember - no matter how much you think you know about your spouse, there is always more to learn.
This is really cool that your blogging on your wife's behalf. My husband too was diagnosed with gp I've been doing a lot of research on this debilitating disorder. We found a great doc in Seattle (only 2 hrs from us thank goodness) the drives can be hard. Hope you find help for her soon
ReplyDeleteThanks, Rachel! It has been such a long, torturous journey as I am sure you and your husband can attest to. So little is known about it, and so few doctors specialize in it. And of course, treatments are limited as well. I wish your husband (and yourself) good luck in the journey and hope that some day he can say that this was just a small chapter in his journey in life, and not the defining one......
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