kidney update

Hi, just wanted to post an update for those that have been so suppotive to me along the way.

Met w/Nephrologist on Friday and my proteins jumped from 3.2 to 9, which is not good at all.  When I let the Doc know I still had some tenderness from the biopsy, he had me admitted to the hospital after I left his office to to an MRV to check to see if I had a blood clot and they also did ultrasounds on my legs to check my veins b/c of my edema.  No blood clots in my kidney and my veins are fine.

I did have to spend my very first night in a hospital, b/c it took so long to get the MRV (a little different from the MRI) just in case they needed to give me some blood thinners which they did not but it was already so late there was no on there to read the test and the test needed to be redone because it was not 'timed correctly' that was at 9:30 at night and I had it redone at 11am the next day (today) and got released today @ 4pm.

The doc is upping my Diovan to help the inflammation in my kidneys but still keeping me at the same level of prednisone (I am starting to get moon face) and if that does not help, may need to put me on something else.  I think I do not respond well to prednisone, I think my UC only got better from the hydrocortisone enema's (that is my theory).

Well at least I am only having 1-3 bm's a day now and dealing w/this and not 25 disasters a day like before.

Also Doc prescribed lasix for my edema but only to take if it get's really bad not to take more than every other day.  I am going to be really good about my salt and make sure to walk 30min a day and drink lots of cranberry juice and see how that will go.

Always fun times!  Also, I had planned my Mom's bday for today and was luckily enough to be able to reschedule w/the whole family tomorrow, everyone is just so good to me......I feel like I don't deserve it.

Trying to stay positive.  Hope all is well w/everyone else.  xo

Hey, Beth, that's great news if no. of bms daily have decreased to 1-3! Sorry to read that you're still hammered with kidney issues though, that messed up the 1st part of your weekend. Any chance for you to schedule that other UC gastro consultation in Boston? I posted a message earlier today about a new online IBD article that discusses UC & Crohn's in terms of 5-ASA responders & non-responders, in case it might give you additional info/support. Hope you'll have a relaxing Sunday. / Old Hat nearly 30 yrs with left-sided UC ... [etc.])

Hi Beth,

I wanted to tell you to keep your head up, i'm glad your bm are much better. Tell mom happy birthday!!! Hope your tomorrow goes great. It's good to have a great family & friends more people should VALUE that. Your in my thoughts. XOXOXO right back!!!

Hi Beth..thanks for the update. You have amazing strength going through all you are, although it's really tough to hear how complicated and painful it is for you. What's awesome is that your GI and Nephrologist are working together, so it seems a good plan to cruise with them for a while.

I hope your mom has a great birthday celebration!

Keep us posted as to how things are going..

quincy xx

good point OH...it can definitely happen...sigh.

q

You totally deserve your family being kind and all of that!

Glad to hear things are going better!

Let us know how the next step goes :)

Cheers!

thanks for the bump on the head Mitz!! I was never close w/my family growing up except my Aunt and my Grandmother, and now as an adult we've all gotten much closer, so yes I do deserve it, I just hate having people worry and fuss about me, but I will have to get over that right! I have a box w/foam under my desk at work to help w/my legs and now that I am feeling better, I am going to try to get in 30 min of treadmill time a day and yes, I do have to get up every hour or so to fax, scan, use the restroom, get water or something, so I do get up and move around. I have tried the support hose and it just pushes the edema up my legs and when I take it off it moves around. I have some lasix and the Neph said to becareful with it and not to use more than every other day. So since my edema of course has not been as terrible as it was last week I have not tried it yet, i'm sure it will get really bad again and I can't wait to see the results of what happens.......my own little science experiment. Maybe they will name some rare kind of edema disease after me.... the "betkankle"...

Old Hat & Quincy - you are right, and I will stand up for myself w/my GI and get a new one if I need to. I just left him a message today about how well I am doing and I am waiting to see what his response is about my treatment, I think that will tell me a lot about what I need to know about keeping him for my GI for now. The Nephrologist increased my Diovan from 80mg a day to 160 a day. The 80mg a day was the lowest dose and I was doing ok on that, so I think going from 80 to 160 is a good decision, it is supposed to help reduce the inflammation in my kidneys so the 'little feet' can reattach themselves. I am glad he is doing that rather than throwing me on cellcept or cytoxin, which he has not brought up yet but I have seen in my research as a next step type of thing. I think the Nephrologist is really good and I am happy with him, he always listens well and really takes the time to explain everything to me (even drawing pictures to help me understand).

NIcepeter - i'm not sure what the abbreviations bmp and ua mean?

thanks everyone for your well wishes! I go on a kidney board and this protein going up and down is pretty typical......wish it wasn't. Also, I wish there was a kidney board on here, that would be awesome!