"We cannot change the cards we are dealt, just how we play the hand." ~Randy Pausch

Thursday, October 27, 2011

More Tests, More Questions

Yeah, right? I saw my rheumatologist who I still really like. She ran a ton of tests. Most resulted the way we expected...my immune system is messed up (my ANA was high). Both of my Sjogrens anti-bodies were positive (they told me that when I was pregnant and that's why they were so worried about Anna's heart before she was born). My Sed rate was high (87 is apparently super high) so she knows that my Sjogrens is active because it shows that there is inflammation in my body.

But the most concerning test was a lupus test that came back positive. It was barely positive, but positive all the same. She asked me to double my steroid for a month and then come back to repeat the tests to see if the inflammation is down and is the lupus test was a fluke. The inflammation could be be a result of getting off of a high dose of steroids too quickly after the surgery. If you know anything about steroids you know that you have to step off of them slowly and carefully.

Lupus is similar to sjogrens but works in a different way. I'm pretty sure my friend's mom has lupus. I'll have to get some info from her.

Monday, October 17, 2011


Got your attention, huh. No, I'm not addicted to pain meds. I'm addicted to strawberry banana smoothies. They are helping me to gain weight. I have three or four a day. Crazy!

Healthiest Patient

The doctor told me that I'm their healthiest patient. Lots of other patients have been readmitted to the hospital for dehydration. Not me! I've got lots of people "reminding" me to drink water.

I'm doing so good that I had blood drawn today but don't need to see the doctors until Friday. Nice!

Friday, October 14, 2011

Stent Removed

I had a stent connecting my kidney and bladder. I guess it was supposed to keep the "tube" connecting the two open so I could pee. Anyway, it was removed on Wednesday. It was pretty easy. They gave me some "Jaco-juice" (Propofol) and I don't even remember seeing the doctor. Good thing. I was nervous once I saw the stirrups!


I keep gaining. I'm back to my pre-surgery weight (119). Still got some more to gain. Jason and the doctors think I should be at 140. I'd rather shoot for 135!


Saw the rheumatologist on Monday. She was nice and very thorough. She drew a ton of blood to see that I really do have Sjogrens and if it's active. I'll go back in two weeks to go over the results and come up with a plan. I like how she operates...get all the facts before you do anything.

Monday, October 10, 2011


The doc told me on Friday that I could start driving! Thank goodness. Tomorrow is 4 weeks. I drive myself this morning and after I had my blood drawn I drove to get a bagel and a coke. Ahh. I sat in my car instead of a hard chair in the hospital. I'm not as irritated as I had been.

Another Doctor

I see a rheumatologist today. My kidney doc got me in fast. She's supposed to be really good and in high demand. Hopefully she knows more about Sjogrens than my last rheumatologist. He was a joke.

Friday, October 7, 2011

Stir Crazy

I'm getting a little bit tired of sitting in the house all alone all the time. But I still need to stay away from people and germs. I watched Alli's soccer practice last night and then we went to Applebee's. It was a quick dinner, but it was nice to get out. The gift card from school helped out alot!


They told me last time that they like to take turns on who comes back first. We'll see. It should be my turn to be close to first.

Date Night

Jason is taking Alli to see the Lion King tonight. She's been so great through all of this...she deserves it. Anna and I will probably fall asleep on the couch.

Tuesday, October 4, 2011

Two Days a Week

Yesterday was another terrible waiting day. I had my blood drawn at 6:30, had a bone density scan at 8:30, sat at the kidney doctor's office until they called me back at 11:00, then didn't see the doctor because they didn't have my blood test results. I went to the urologist and called the kidney doctor to see if my results were back...they weren't. So, I went home. They called me later.

But the good news is that things are still going well and I only have to go to the hospital 2 days a week, Monday and Friday. Hooray!


My labs looked good. My creatinine is 1.0 (great), my white blood count is 8.5 (no infection), my red blood count is 10.5 (improving). My sugar was 78 after fasting (much better than it was before). Yeah.

Bone Scan

I had a bone scan since I've been on the steroid for so long. It said that I have osteopenia. It guess that means there is some thinning of my bones. It's hard to tell if that's because of the steroid or because of family history (my mom and grandma have bone issues, too). I'm supposed to start taking Caltrate with Vitamin D for the time being. I might have to start an osteoporosis medicine, like Boniva that Sally Fields takes.


He walked in and said, "So, you got a new kidney...awesome! Congratulations!" He was cool. He said they could remove the stint by just using some numbing cream and then it will take only a few minutes to "go up there" and remove it. Ha, right. He says most women are more comfortable when they are sedated and that will take a couple of hours to get me to sleep and then wake me up. Please, put me under... That will happen next week.

Sunday, October 2, 2011

"Things Couldn't Be Better"

Once the doctor finally showed up on Friday it was a good appointment.

My white blood count is down which means we are no longer worried about an infection...yay! My red blood count is up, so I should start feeling like I have more energy soon. My blood pressure was good, lower than I'm used to, but good. My creatinine level is 1.0. This is the big test that tells us if the kidney is working. Normal is between 0.5 and 1.2, so it's really good! Potassium and calcium are good. Phosphorus is still low (who would've thunk it).

My appointment was so good that he considered having me NOT come back in on Monday. Maybe we'll be down to two days a week soon! But I have other appointments on Monday, so I would be there anyway.

I get a bone density scan at 8:30 on Monday. I've been on a steroid for so long that he wants to check my bones out for osteoporosis. Then I see the kidney doctors like usual. And finally I see the urologist at noon to talk about getting rid of the stint that I have connecting my kidney to my bladder.


I went to church last week. I sat in the back, didn't shake hands and wore a mask. I got up and showered today to go again, but it wasn't meant to be. Every time I stood up I felt my blood pressure drop. I was fine sitting down, and would have been fine once I made it to church. But I had to get there and get to the back. I decided to stay home.