Posted 9/5/2013 7:45 AM (GMT 0)
Hi everyone,
I had my first appointment at the Mayo Clinic on Tuesday so I thought I would update everyone on how it went!
Meeting my doctor was at first a little uneasy. She is a “fellow” at the Mayo Clinic, which to my understanding means that while she was already a doctor, she is working on becoming specialized in the GI field under the supervision of one of their more tenured doctors. The benefit to this is that I essentially get two doctors right from the get go, one who is newer, fresh mind, to the field and one who already has lots of great experience, which I felt comfortable with.
The reason that it was bit uneasy at first however, was not the fact that she was a “fellow”, but more so that she had a slightly abrasive and blunt bedside manner. At first she didn’t seem to understand how all of my symptoms fit together to make things so difficult for me, and seemed a little put off when she asked me what my goals were and I mentioned that in addition to getting over whatever it was that was currently bothering me was definitely the short-term goal, but that I also wanted to overall “get my life back” in the long term and be able to do things like drive and work out again.
(Maybe it is just my imagination, but I feel like when I see specialists who are females that this is actually pretty typical of their demeanor and personality, to the point where I almost feel as if I have to defend myself and how I am feeling rather than just explain it. Maybe it’s the whole female-to-female thing that we women sometimes tend to have anyway when meeting each other…)
Either way, in her defense, they had asked me to send the last 5 years of my medical history. From everywhere. So she had quite the stack of papers that she had to look over, that included everything from the false lung cancer baloney to every sinus and ear infection I have had over the last five years. With my concurrent issues of the hypothyroidism and POTS/VVS, she could have very well thought I was crazy or ran to the doctor for every sneeze that I had ever had.
Luckily, the more tenured doctor seemed to understand this completely and let me know that he understood that I was more than a “stomach and a colon” and that my whole body was sending an extreme message that something was wrong. After talking, a few tears, and a lot of poking at my stomach, we were able to come up with a good plan.
The main thing that we will focus on of course it my GI system. They basically are going to look at everything, in every way possible, from the actual structure and functioning of my stomach, to the way that my digestive system is working in terms of acid production and the digestion of lactose and sugar. Then, as we work to get that under control we will start to branch out: getting help for restoring my diet and gaining weight back, making sure that my concurrent conditions are at a functional level, and also any support that I might need for dealing with the stress and emotions of this whole situation. (I objected to the last part of the plan at first, but I have to be honest with myself, this has not been an “easy” thing to handle, physically or emotionally).
With the plan in place, they got to work right away and were actually able to get my lab work done and the abdominal MRI completed that same day. The other tests were able to be scheduled for this week and next, and I will follow up with my doctors again, likely in about three weeks or so, to get the results of everything.
The specifics on the tests that they are running are:
Tuesday I had the MRI of my abdomen with contrast.
Thursday I have a Lactose Breath test.
Friday I have a Rad Nuclear Medicine SB Scan + breakfast (not quite sure what that means...).
Next week on Wednesday I have a full Colonoscopy and Endoscopy and they are inserting the BRAVO monitor.
Thursday I have a Fructose H2 Breath test.
Also, I sent a doctor a list of my goal via the Mayo Clinic patient portal message center. Like I said, at first my female doctor was a little abrasive. I hope that it does not come off the wrong way, but when she asked me the question during the initial patient interview she cut me off and I didn't get to full express myself, so I just wanted to be sure that they understood my perspective on my condition. I think that even with the best of doctors, it is still very important to be your own advocate.
These are the goals that I sent:
Primary Goals:
1. To diagnose and treat my current GI symptoms of: upper and lower abdominal pain (both the persistent cramps and pain as well as the episodes of sharp pain), diarrhea and intermittent loose stools, and extreme nausea.
o I understand that before my extreme symptoms started I have always had some level of complications with my stomach, such as acid reflux and IBS. Realistically this likely means that my symptoms will not go away entirely, but I hope to get them to return to the functional level that they were at before my illness in February of 2013, where they are no longer interfering with my daily life activities or preventing me from functioning normally.
2. To address and treat the secondary complications that my recent GI symptoms have caused, including:
o Inability to eat diet that is sufficient for sustenance and health
o Weight loss
• My typical weight is between 110-115lbs. Before my current episode of symptoms, I was able to get my weight back to about 108lbs.
• My current weight is about 97-98lbs, and I have been losing weight at a rate of about 1-3lbs per week despite my best efforts to maintain it.
o Dehydration
• I try to stay as hydrated as possible, however this becomes worrisome with my episodes of diarrhea
o Fatigue and Malaise
• My GI symptoms seem to impact my level of energy significantly. When they are at their worst, I experience extreme weakness and need assistance with daily activities such as walking up stairs, getting up from a sitting position, or showering
o Increased levels of dizziness and weakness associated with the above listed primary and secondary symptoms.
• While I do have some concurrent conditions and take some medications that can cause dizziness, there is a significant increase that seems to be a side effect of my current state. I hope that these symptoms will simply go away when the other symptoms are treated.
3. Become healthy enough to return to my regular daily activities
o With treatment of my primary and secondary symptoms, I want to get myself back to a state where I am healthy enough to fully participate in all of my previous daily activities, including working full time and light physical exercise (yoga and walks).
Secondary Goals:
1. Make sure that my concurrent conditions, especially of hypothyroidism and symptoms on POTS/VVS spectrum, are as controlled as they can be and ensure that there have been no additional complications caused by the ongoing GI symptoms.
2. Make sure that I have the resources and support I need to manage any associated stress or emotional difficulties, if needed.
Anyone have any thoughts or anything else that I should request or make sure of? I want to be sure that I make the most of this opportunity to work with these doctors. I will keep you posted.