Monday, January 23, 2012

Last clinical trial visit : FSGS Sucks

I went to Cincinnati today for what will be my last in-person visit with them. Standard stuff for my last visit....blood work, first morning urine, vitals....the usual.

I won't necessarily miss any of that in particular, but I WILL miss the people there. It has been so great to bounce things off of them. I can ask a ton of questions and they are always willing to spend the time with me explaining things. I'll not forget the explanation Dr. Goebel gave to me regarding how different diuretics target different areas. He even drew me a picture on a napkin!

Even today he was answering questions about Rituxan and Acthar for a friend of mine. It's not part of the protocol, but he took the time, and now I have a much better understanding than I did from the hours I've spent searching Google.

The great thing is that I know that I can always contact them if I have any questions. And I'll keep doing my best to inform people of the clinical trial.

I also had a bunch of labs done this morning. I had done a 24-hr urine yesterday, and for those of you kidney peeps that are familiar with the bonnet you put over the toilet (OK, it's probably only the ladies who deal with this), but I overflowed it TWICE in the middle of the night last night. It's 800 freakin' ml, and I overflowed the damn thing. Filled up the collection jug completely too. I am a peeeeeeeeing machine! I think I should be pretty thankful for this, because I'll be missing this when my kidneys start to go south.

I have figured out this whole diuretic thing a bit better though. I time it better, because I know that I'm gonna have to go REALLY bad within an hour of taking them, so that's helped a bit. Now, if I could just remember to take it earlier in the evening so I only have to get up once in the evening.

The swelling seems to be abating too. I just got out of a super-hot bath so I think that helped. I've been resorting to oatmeal baths because I had another allergic reaction to the compression stockings. I wore them Saturday, and the bright red band is visible again. Oatmeal baths provide some relief thank goodness. I emailed the company to find out more about the materials and to see if they had any hypo-allergenic options.

Another thing I love about Dr. Goebel and Barbara at Cincinnati....they didn't yell at me when I told them I ate nothing but buttered popcorn and tomato juice for 4 straight days :)

1 comment:

  1. I'm still very confused about your diet versus mine, but that's okay because everyone with Kidney Disease seems to be completely different!

    I know you will miss them - you have only ever spoken of the program with high regard. I cried when I had to give up my Nephrologist in VA. It was not possible to continue to do 90 minute drives in traffic. You develop a great bond with folks like this and it can break a heart to let go of them.

    Best of luck, especially with the socks...??


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