Always, my goal is to try to reduce the amount of doctors I must see and the appointments I have scheduled in order to live as normal of a life as is possible with this disease/disorder. Lately I have been doing very well in meeting this goal.
I lessened the visits to one doctor, my pulmonologist, by calling, canceling the appointment and…uh… not rescheduling a new one. That’s probably not the recommended method of reducing the scheduled doctor visits I have, but it works. Plus, my breathing is fine right now.
In a much more recommended method: I was given the “make an appointment when needed” by my GI doctor. Fortunately, my weight has held steady and I’m not losing massive amounts anymore (granted, this comes with its own existential crisis that most American women face). I still fluctuate between intense stomach pain and nausea at times, but those are manageable with meds (Zofran is my hero) and are not affecting my life too much.
My nephrologist also set me free to decide when/if I need to see her again. I don’t have any explanations for why I waste magnesium and calcium into my urine, but it doesn’t seem to currently be affecting me too much and I’m willing to ignore it for right now. Otherwise, my kidney tests have all been normal. I sometimes still see the brown urine when I extend myself too much, but it’s not been consistent enough for me to bother with testing.
The third doctor who gave me the ‘all-clear’ was the osteoporosis/endocrinologist doctor whom I saw. I had a DEXA scan and while my T score showed osteopenia, my Z score was normal. We are going to follow the Z score for now until I get a bit older. She did recommend a treatment plan to raise my Vit D levels. The lower limit of a normal Vit. D level is 30. Mine was 17 and my doctors want my levels around 25. Having a slightly lower level of Vit. D is beneficial for me due to the wasting of calcium. So I am only taking a small amount of Vit. D supplements. I am hoping that they do have a positive effect on how I feel.
Overall my health has been pretty well behaved lately. I am glad to be able to reduce the amount of doctors I see on a consistent basis and I would be ecstatic if this could be a permanent reduction in appointments. Time will tell.
The only thing that has been steadily grumpy and getting worse is my heart. I’m really not sure what to do about the symptoms I have been having. I have absolutely no desire to increase the dosage of my beta-blocker or to add a calcium channel blocker. I think, in this case, the least unpleasant plan would be to see an electrophysiologist, but I’m not sure I like where that road leads. At least I have until October to decide what to do.
This disease sucks, it really really sucks, but at least I am holding my own against it 🙂
In the past I have talked about the Law of Medical Tests. This law (which may only pertain to me) states that in any given number of medical tests, one will be abnormal. All too often, it will be a completely random one that can’t really be explained by my having Loeys-Dietz.
So what was this round of normal/abnormal tests you may ask?
Well, like last time, this started with a nephrology appointment. The nephrologist ordered a round of testing before I even saw her. Most of it was routine and was normal. Including the thyroid tests (Stop testing my thyroid!). My vitamin D, however, was low. I already knew that the levels weren’t where they should be. I’ve had that test before and it was low then too. This really isn’t uncommon and probably half the people who are tested will show low Vit. D levels. The problem with this result, however is how far it dropped. Last time, my result was 29 with the lower limit being 30. I wasn’t concerned with it being only one point out of range. Plus, it’s not a problem till it gets below 20 anyway. This time though it was 17. Well… I guess that’s a problem now huh?
I think I’ll just ignore it till my appointment at the Bone Metabolism Clinic in June.
But at any rate, that should have fulfilled the Law right? That’s my abnormal test result right?
I also had to do a 24 hour urine test which measured different electrolyte levels in my urine. Now, for anyone who’s ever done this test, you know that it sucks. Really sucks. Like really really sucks.
I had a jug of my own urine in my fridge.
This is what nightmares are made of…
I was especially frustrated with this test because I was fairly certain that it would come back normal.
Apparently I have elevated levels of calcium and magnesium in my urine. Wonderful. Fan-freaking-tastic. Loving it… Not.
So what does that mean? Good question. So what do I do about it? No clue. What’s next? Umm… Well, I got referred to a urologist. Another specialist. I am not amused.
Seriously though, I would like to give this disease back. It’s not meeting my requirements for a semi-normal and reasonably easy life.
Today was my 2nd nephrology appointment and overall it went pretty well. At least, as well as someone with a rarer illness can expect it to go. For one thing: My doctor actually did RESEARCH! I was stunned!! Aside from my geneticist, he’s the only one who said something about EDS that I didn’t already know!! Something relevant to my current symptoms! It was amazing! And for another thing: He consulted another specialist instead of just giving me a referral! Yes!! This means a LOT. I’m tired of having an ever-increasing list of specialists whom I go to. It’s exhausting and slightly depressing. These two things alone made the appointment amazing and they have nothing to do with my actual health. This goes to show how important doctor behavior is though.
As for what came of the appointment, things are a little… frustrating… As is normally the case, the very first thing you do when seeing a doctor is to get weighed. This was one of the things I was most anxious about. Unfortunately, I’ve lost more weight and I’m down to 118lbs now. This isn’t a drastic change and it’s not like I’ve lost a huge amount of weight suddenly, but it’s not normal for me. It’s a new symptom. It’s concerning. It’s consistent. And it’s annoying as h*ll that I can’t get any doctor to take it seriously! It’s like they’re waiting till I finally crash before addressing it. Frankly, I’d like to avoid the crash that will happen if this continues. But oh well. Either way, it’s not a kidney doc’s place to worry about my weight anyway.
Since all my kidney tests came back relatively normal, the next logical step would be seeing a urologist and performing a cystoscopy to see if there’s anything going on in my bladder that could be causing the bloody urine. However my nephrologist consulted with the urologist (aren’t I smart for knowing all these different doctor specialties??) and they decided that, because of my EDS, it was too much of a risk at the moment to do a cystoscopy. With EDS, tissues can be fragile and “friable”. This means that I’m prone to being easily damaged and to easy bleeding. I wasn’t really surprised to hear this, especially since my GI scopes showed friable tissue. Why should my bladder be any different? Personally, I’m happy to bypass the whole shoving a scope up my pee-hole thing anyway. Not my idea of fun. So I was given two possible explanations: 1) I have bladder diverticulum (which is associated with Classical EDS…something I didn’t know) which can bleed, explaining the bloody urine. Or 2) I could have a renal aneurysm (which would be more possible with Vascular EDS). These rarely bleed, but it’s still a possibility. Since I’m getting tested for both of those types of EDS, I guess they’re both likely. The nephrologist believes I have the Vascular type, but I’m not so sure. I do have a family history of aneurysms though so I can’t really rule out a renal one.
In the end, we decided to do a “watch and wait” approach. I’m completely fine with this though since I was getting tired of running through all the medical hoops. I need a break. I’m not sure I would have been willing to undergo a cystoscopy at the moment anyway. There’s something so very demoralizing about undergoing a procedure with the whole IV thing and sedation and hospital beds.. even if it is outpatient. So I get a free-pass for 6 months at which point I will do repeat blood work of the tests which I had abnormal results on. But for now…. Freedom!! Life is good 😀
Disclaimer: This law may only pertain to me… clue me in as to whether others experience this please!
According to this law, I will have an xxx number of medical tests that will come back normal until I reach a critical limit and get an abnormal result back. What makes this particularly unusual is that the abnormal results can be completely random. For example, I just had a series of blood tests ordered by my nephrologist. I got back 5 normal results (Yay! I don’t have Hepatitis!) and therefore earned an abnormal result. I wasn’t really expecting anything to be abnormal. I knew I didn’t have hepatitis (2 of the tests ordered), I didn’t think I had vasculitis (2 more of the tests), and I thought my complement was fine (another 2 more of the tests). Turns out I was partially right on that last part. This is where the law stepped in. My C3 is just dandy. My C4, however, is a bit low. I have NO idea why this would be. I have NO idea what it means. I was NOT expecting it. And that’s how the law goes… it happens whether I’m expecting it or not. So now I have a test result saying that there’s something funky going on with my immune system. I’m really curious what this will mean for my next appointment. I am slightly worried that this may lead to a kidney biopsy in my future.
So now I’m seriously considering asking for a CBC with every series of tests or a CPK. Something that I know will come back slightly abnormal and will fulfill the “Law of Medical Tests” requirement without adding anything new and random to consider. I don’t think it matters what is abnormal as long as something is.