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 😀