Update on my numbers..

Well, actually it is on my kidney numbers. I am not due for a huge autoimmune work up until transplant or August...whichever comes first. The cellcept was working for the 4 months in a row according to the collected data for the Sjogrens. They continued to inch down. :) Hence why no new numbers there.

Are you ready for this??? My creatinine was 2.6 a couple weeks ago!!! I went from 3.5 in Jan 2009 to 2.6 april 2009. My BUN was 38, hematacrit 32.9, hemoglobin 11.3. Not too shabby. I have a Nephrologist appointment in a couple weeks and I am going to ask that when I get my monthly labs for them to be sure to double check that creatinine. A few people seem to think it could be a lab error, but I honestly feel good the past couple weeks. I told my hubs that prior to getting the results.

I have been told that my kidneys are too far damaged to save them and that it would be only a matter of time before dialysis. This past winter was rough and I thought it was knocking on my door...but I swear I feel good. 3 weeks ago I didn't have enough energy to even read to my boys, and now I have gone without taking a nap this past weekend. Woo-hoo!

If my labs are true, I can definitely feel the difference between 3.5/3.1 to 2.6 . My mom believes it is all the prayers I have been getting. I have hundreds praying for me...perhaps over a thousand. I thank you for all the prayers and keep them coming.

How Vicky Got Her Drool Back...

I had forgotten what it felt like to wake with a damp pillow. I know...GROSS! But...hey...we all do it. (especially during a stuffy nose and cough that won't go away)

One of the most common signs of Sjogrens is a dry mouth. Here is an interesting link to dry mouth and Sjogrens. It also points out the following;

Dry mouth can be a sign of certain diseases or conditions, such as Sjogren's syndrome.

Dry mouth can cause difficulties in tasting, chewing, swallowing, and speaking.

Dry mouth can increase your chance of developing dental decay and other mouth infections.

Dry mouth can be caused by certain drugs or medical treatments.

I would say the second one has been the worse for me at this point. I have to make sure I have a gallon of water to get a biscuit down without choking. The best way I can describe it is when you take a big spoon of peanut butter and try to swallow it. It is hard and almost next to impossible....welcome to my world. Or at least what was my world for quite awhile. I am on cellcept right now and the drool has returned. Gladly I might add.

Cellcept is an autoimmune suppressant drug normally used after a transplant. It is being used for the treatment in autoimmune dieseases at times but as my friend Maria at My Life Works Today points out ...

"One thing I did find is that the FDA is resisting approving it due to the possibility of it triggering a virus (JC) in our bodies that resembles a disease something like MS (progressive multifocal leukoencephalopathy or PML). Here's the link: http://tinyurl.com/4dog5r The incidences of this have been small and I have had no indication of problems. There's a risk with everything and Cellcept has been a lifesaver".

Maria and myself are responding well to cellcept. It is keeping her kidneys and Lupus at bay. It is helping me prepare for transplant and it is how I got my drool back!

Another Update on Sjogrens and Kidney Lab Work

First, I believe the cellcept is bringing my sjogren titers down. I will hear back from MUSC next week on my course of action. I think they will want to increase my dosage. My ANA titer went from 1:1280 to 1:320 ....Pretty good! My Rhuematoid factor was over 2200 and now it stands at 225.8. SSA is 709 SSB is 874. I am not sure what these were previously. Everything is still high, but better!

Now....my hemoglobin is down to 10.0 and my hemacrit is 29.8. LOW!! So my procrit injections are back to once a week. I am dragging my butt from lack of energy. This is why I hav not posted as much lately. I know I will feel better in 2 or so weeks. They are checking my iron levels in 4 weeks too...I may also have to supplement the procrit injections with iron.

May I borrow your voice??

I have no voice...Laryngitis. Is that how you spell it? This cold has kicked my butt. I feel a little better today.

I received my "congratulations" letter from MUSC stating that I am on the transplant list. One more thing to check off my list. I think the cellcept is working. I get blood work on the 22nd to check my levels. I have still been tired, but I think it is because of the holidays. It is a different kind of tired when it is Sjogrens and I have noticed the past week that I am not aching. I have not had to take any pain pills since last Tuesday. This is why I think the cellcept is starting to work and bring my ANA titer down. My procrit Injection is tomorrow too, so that will boost me up for a few days!

BIG NEWS!!!!!

I am officially accepted into MUSC's transplant program! I will be listed on the national registry for a kidney. We are STILL looking and testing for a live donor. My sister should be a front runner soon.....we are hoping.

I am to start Cellcept though prior to transplant. Normally, this is given after transplant to bring the chance of rejection down. It is an autoimmune suppressant drug. HOWEVER....because it is an autoimmune suppressant drug the transplant team wants to see if I will respond well to it and bring my ANA titer down to a reasonable level. I see that people with Lupus or Sjogrens are put on this to control their disease....it looks favorable. Anyone out there using Cellcept?

I am very happy with my news.....now I just need to respond well to Cellcept!