Recently, Colleen was placed into a clinical study (this has nothing to do with the raccoon), where she needed, over the course of two weeks, to take a few visits to Baltimore to undergo a study which involves taking a lot of blood, undergoing yet another gastric emptying study, and an EGG (electrogastrography) test (actually, two of these tests - one that I guess you would call a "normal" test, and one that they refer to as a water loading test)
My original plan for this entry was to do it in real time - for one, I do it this way because I don't want to forget anything. For another, it does help pass the time. Suffice to say, things moved at such a quick pace that it was hard to keep up with everything. Now, "going at a quick pace" doesn't necessarily mean that these trips were quick. Quite the contrary, actually (especially trip one). Anyway, if you saw a very much incomplete blog entry posted a few weeks ago, that is why it was never finished..that, and the raccoon, which we will get to later.
For the first trip, we left the house around 4:30 in the morning, and made decent time getting to Baltimore. Timing is very important when planning a trip to Baltimore - if you live in the Northeast and decide to make an appointment down there, I highly suggest going in as early as possible - it may be a long, lonely ride - but at least you won't hit crazy commuter traffic. We have to travel some roads that are typically quite busy (NJ Turnpike, 95, etc.), so getting out of here as early as possible usually helps us make great time.
The first part of Colleen's test that day was another gastric emptying study. She already had undergone a few of those through the years - to be exact, it was an outdated version of this test that originally lead to a Gastroparesis diagnosis. The second time she had this test, it was a more updated version of the test that resulted in an emptying time that was only slightly off. The third test? Let us just get this out of the way: Our suspicions that Colleen is not dealing with Gastroparesis were pretty much confirmed. This was supposed to be a 4-hour test, with the typical images taken at various intervals to see how much of an egg sandwich has been digested. Colleen was told she could leave only a few hours into the test, as the meal was passing through her system at a normal level. The bottom line here is that do not let one test or one doctor tell you what you have. Getting second opinions. Third opinions. Because it takes more than one test - especially an outdated one - to prove you have anything.
You may be thinking that was the end of the day. You couldn't be more wrong. We had to take a second drive - this one to the building where Colleen goes to see her specialist - for more testing. It probably wasn't much after 12 pm when we arrived for this part of the test. The researcher who was conducting this testing essentially explained to us, as we were walking to the area Colleen would be tested in, that these tests were going to take a long time. I don't know exactly how close Colleen was to leaving at that point, but I am glad she waited it out - this was not going to be easy. Remember this important thing when you sign up for a study like this: You are essentially a guinea pig (and when they take this much blood, a pin cushion). These tests aren't necessarily diagnostic in nature - no doctor is going to come in at the end of the day and discuss the results with you. That said, the results are real, and they should be seen by your doctor. There is that delicate balance between what is research and what is actual patient care. If they take all of this blood work and notice a major problem, they aren't going to toss it aside - by the same nature, you do have to realize that you are helping them do clinical research and there are certain protocols that need to be followed.
I don't remember the nature of all of the testing Colleen had done on that first trip - the gastric emptying (normal), the blood work, a "smart pill" test where she had to swallow a pill while pictures were taken as it traveled through her system (this required her to eat a "Smart Bar", which is essentially a $20 granola bar that Colleen found to be quite disgusting. I personally looked at the ingredients in this bar, and my goodness. You are giving this thing to a person with digestive issues, and it actually contains partially hydrogenated oil, also known as "trans fat", which is perhaps the most dangerous of all of the fats found in our "food". Just as a general tip: Always read the list of ingredients when purchasing something. A company can put 0.49% of these oils in any food they wish and still claim to be "trans fat free". That is because the FDA allows companies to round down. This is also why spraying a whole bottle of "zero calorie" I Can't Believe It's Not Butter on your potato is actually not calorie-free. But I digress...) There was also another test that required Colleen to do some breathing exercises in addition to the EGG (mentioned above). She was literally there for hours, somehow getting through all of this stuff while not feeling anywhere near her best. We don't know the results of any of these tests (other than the gastric emptying and the first round of bloodwork). Hopefully, we will get at least some answers on what the tests are showing in December.
In total, we left the house around 4:30 in the morning and arrived back home at around 9:15PM that night. We did make one rest stop on the way home, but that only added marginal time. Bottom line: This was a long day. A long day where our three dogs (one of which is very young, and another of which is 11 years old) were home the entire time without anyone to let them outside. Miraculously, there wasn't one mess anywhere to be found - it was as if all they did was sleep for all of those hours. The 11-year old didn't even go outside upon our arrival at home - he was more interested in getting his meal. (note that this is typical behavior)
The next round of testing was scheduled for the following Monday.....but that came to a screeching halt the day after her first round of testing. As I was walking two of our dogs through the neighborhood at 4:00pm, we encountered something one does not want to encounter in broad daylight: A raccoon. Let me get this out there right now: If you see a raccoon in broad daylight, the reasons why are not typically good. The most common reason is that the raccoon is sick and rabid. If it is a younger raccoon, it could be that he or she was abandoned. Either way, they are not out for a friendly stroll of the neighborhood. In trying to run away from the raccoon (who decided that he wished to follow us rather than run off), I tripped and landed very hard on my right shoulder - to the point where I couldn't even move it as I was laying there. I can't tell you to this day what actually became of the raccoon - one of the two dogs started going crazy and was barking uncontrollably, which actually makes me think he went into protection mode and took it upon himself to scare the animal away. Regardless, it disappeared. A couple of neighbors saw all of this action and came to my rescue, walking the dogs the rest of the way home for me. As for me, well - a free (well, not really) trip to the ER, with the customary X-Rays included. They came back negative for any breaks, but I did have a severe sprain, which is still bothering me as I type this a few weeks later. Suffice to say, this episode (in connection with the possibility of stormy weather) had us cancel the Monday appointment - instead, we scheduled it for yesterday.
I still was unable to drive such a long distance, so Colleen had to be the trooper, driving both to Baltimore and back (I usually handle the drive to Baltimore). That is essentially driving six full hours of driving, on what turned out to be about two hours of testing. For this round, they simply took some more blood (not nearly as much!) and did another EGG - this time, the EGG was called a Water Load EGG. Colleen had to drink as much water as she could before feeling full before they ran the test. At intervals during the EGG tests, she has to fill out a form saying how she is feeling. It is a lot of sitting around for her (her least comfortable position), but again, she was able to power through it. We are not sure what this round of bloodwork entailed or what they were looking for. We should be able to find out, though.
This time around, we left much earlier and were home in the middle of the afternoon. To be exact, the hardest part of the driving for Colleen came during the ride home, when we made a stop at a rest stop so I could run in to get something for us to eat and drink. Friday was a hot, brutal day - having to sit in the car while I was getting this stuff was pure torture - when you factor in my injury and the need to make two trips, that made it even more brutal.
We won't really know the results of the EGG testing and the other testing she needed to do right away. We don't know what, if anything, the smart pill is showing. We don't know what the EGG is showing. We don't know what the second round of blood testing was for. And there was another test that required Colleen to do some breathing exercises that I don't even know the overall purpose of.
As for all of that initial bloodwork, a few things did come up - whether they will lead to any kind of true answer is tough to say. Her Vitamin B level is extremely high, but if you read up on that, that isn't clinical - research has shown that Vitamin B tends to be high in people with certain conditions, but it isn't the high Vitamin B that LEADS to those conditions. Her Vitamin D level was insufficient, which she can bring up through supplementation (and one thing we don't have a small supply of in this house is Vitamin D, as I have to take it as well). She also had a low MCH test, which is a measure of hemoglobin. Her test isn't extremely out of range (but I think most of you know my feelings on ranges in lab reports), but a low number here could indicate some sort of anemia. My research showed that people can get a low reading on this if they lack iron, or have some sort of vitamin deficiency (and, as I noted above, Colleen is low on the Vitamin D scale). Anemia can be an interesting little detail, since Colleen is often very tired - but this is no time to put the cart before the horse. It is one low number among a bunch of very normal numbers, it is not severely out of range, and most importantly, we are not doctors able to completely interpret the numbers. The last test that came back abnormal was her TCH. Colleen has always suspected her thyroid is crazy, but she has never been actually treated for it. She has had a few tests that show normal levels, a few that have shown elevated TCH (which is hypo) and even one test with a very low TCH (hyper). Sometimes, you wish a doctor would see that and wonder what is going on. (To be fair, TCH is a very sensitive test - and it isn't completely abnormal for it to show different numbers based on time of day, and other factors. Plus, there are other thyroid function tests that take things even further. As one doctor explained to Colleen, she may need to treat it some day, but she doesn't typically treat someone with her numbers NOW.) It really does depend on the doctor - do you want the doctor that will look at the number and say "Here's your prescription - get out" or the doctor who says "Well, that isn't normal - but it is my procedure to not treat people at those levels"? The second doctor is probably the better overall doctor - but the first one may be the one you want when you are feeling desperate for a solution.
As always, Hopkins came through in terms of hospitality, doing their best to keep Colleen comfortable, and just running a generally great operation overall. There is definitely some feeling that Colleen is a bit of a lab rat with these tests, and technically, that is true. Without the research, the hospital can't made advancements - but the research can be a killer, especially when you aren't feeling well and you have that nearly three-hour drive home in the back of your mind as you are going through it.
Colleen has another appointment with the actual doctor in December - hopefully, she will be able to discuss all of this with him at that time. As part of the study she is doing, she also has to return in six months to take a few of the tests again as a follow-up. Hopefully, none of it requires eating a disgusting, far-from-healthy granola bar. ($20 for a piece of crap bar?!?! Seriously?)
The journey has been long, and we still have more questions than answers. The only answer we have really verified is that this isn't Gastroparesis - at least not a traditional form of Gastroparesis. It is something else - but what that something else is, we just don't have any kind of answers on. Maybe all of this testing will actually reveal something beneficial.
