Cleveland Clinic visit

This was, by far, the weirdest doctor's appointment that I've ever had. First off, let me start out by saying that this clinic's campus was enormous, and impressive. My appointment was at 7:30am, which is an ungodly early time for all of us, but by some miracle we made it.

First, I had my vitals taken and medication info entered. They did an average of my blood pressure measurements. There were supposed to be 6 measurements, but the machine malfunctioned, and since I'm not hypertensive, they were satisfied with the initial reading of 117/75 (which is MUCH lower than what I've been measuring, and that makes me wonder if my machine at home is functioning properly).

After that, a physician's assistant by the name of Carol came in and walked through my story. It's so hard for me to remember dates, but I did the best I could...she got confused...A LOT, but I think we got it in the end.

Then we waited....and waited...and waited a little more in an unbearably warm little exam room. Finally the doctor, Dr. Pohl, came in, only to go through my history all over again. It was hilarious to watch the interaction between the doctor and everyone else. It's difficult to describe, but let's just say that doctor runs the place, and you don't interrupt him. I was a little nervous at first, but once he had the information he needed, he began to talk to us and I felt MUCH more at ease.

He said I'm an interesting case...a great teaching case. At first I didn't think that this was good, but Joacim pointed out that he's interested in my case, which means he's going to follow it...and personally. He said some very interesting things...like I behave like I have Minimal Change Disease (my original first diagnosis), but also said that the biopsy is what it is. I may be some sort of hybrid...he kept saying that I'm doing " too well " to have FSGS, at least with other cases that he's seen. And spilling 10+ grams of protein...I should be a lot more swollen than I am. He was amazed that I didn't have any problems during my pregnancy (and also didn't seem to think that it would be a problem to have another one,,,YIPEE!!!).

So with all of that, what are the next steps? Well, for starters, I'm doing a 24-hour urine test here today (not as easy to do here as when I'm at home) so that he has both a random and 24-hr collection to correlate the two. It's been found that anything above 4 grams shows a pretty good correlation between random and 24-hr results, meaning that if the random shows 6 grams then the 24-hr would too. This is good for most patients because 24-hrs are a pain to collect, and most don't do them to the letter. Unfortunately, this correlation doesn't work for me, So 24-hr tests are more accurate.

Once I get back home, I'll work with my nephrologist to obtain the original tissue samples from both biopsies. I had no idea that they actually keep these (ewwwww) but apparently they do, and they don't like giving them up, so I might have some issues but I'm sure it'll all work out. I'm going to try to get this to Dr. Pohl by Dec. 14 because he'll be back in the office and able to work with the renal pathologist there to review my samples personally. Once that's been accomplished, he said he'd start showing my info to lots of other doctors to see what they think.

Dr. Pohl agreed with everything that my nephrologist has done so far and said he would've done the same (score 2 points for Dr. Santos!). Dr. Pohl DID mention something about taking another course of prednisone, this time doing an alternate-day therapy. I'm totally freaked out about this, but he seemed pretty confident that I wouldn't experience the awful side-effects doing it this way. Sadly, the reason my doctor and most doctors blast patients with daily high-dose prednisone is because it works in children. Yes, you read that right...children. When kids get this, they can go into remission within a couple weeks, but it took me nearly 6 months the first time to achieve this. It's still amazing to me how little is known about all of this and that most of my treatment regimens exist because they worked on children.

So I'm anxiously awaiting SOMETHING to happen. I have no more answers than I did when I got here, which was originally my worst fear, yet I'm oddly at peace and excited and glad that I made the decision to come here. I have a renewed hope for some odd reason. The end result in all of this may be the same in the long run, but I'm confident that I've done all that I can do.


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