Living With Wolfram Syndrome – Lauren’s Story

Being Sick and Having Surgery, NOT A Good Combination

Hello everyone!  As you know I was going to have my surgery on Wednesday, but unfortunately on Monday night I was up every hour throwing up.  I luckily didn’t feel sick but couldn’t keep anything down.  My blood sugar started to drop a little so I drank some juice but threw it up right away.  Luckily this happened later in the night so my blood sugar started to go back up again because I needed to give my insulin shot.  Fortunately I stopped throwing up around 8:00 am.  This was good so I could probably have the surgery if I didn’t get sick again, but bad because I was tired and weak.

Photo of Lauren and Pat GibiliscoI was able to sleep most of the day, but my mom who stayed up all night with me, had to stay awake during the day so when I needed up she could help me because I was so weak.  She was very exhausted and still had to drive me two hours in the next morning for my surgery.  She had to wait for me during the surgery and then drive 2 hours home that night.

I feel bad that my disease has to affect others in my family. My surgery went well.  I got to go home that day so that was good.  The surgery did not paralyze my bladder so this made me very happy.  It’s still too early to tell but everything seems to be working well and better than before.  I didn’t feel good for the next two days after the surgery but I am feeling good now.  Hopefully next week I can tell you that the botox is working very well.

Living With Wolfram Syndrome – Lauren’s Story

I’m Getting Botox, But Not The Way You’d Think

Photo of Lauren GibiliscoToday I am going to visit my grandmother celebrating her 80th birthday. I love my grandma and it is always fun to get together with all my relatives. After my doctor visit on Monday, I found out that my urologist is going to try something new for my bladder issues. I have a neuro stimulator implanted for my bladder that constantly spasms. It worked really well before but lately its not working as well. I get up almost hourly every night to go to the bathroom. This really tires me out because I never get any sleep. He is going to inject botox into my bladder to keep the spasms from occurring. He said he has had a lot of luck with this. He said it was done often on patients with MS or Cerebal Palsy. So I agreed to try it. It will last for one year. The doctor also had to inform me that there was a chance that it could paralyze my bladder. This thought really scared me. I thought, I get all the weird things happening to my body, so does that mean that I will have a paralyzed bladder? It this occurs, I would have to catherize myself for a year. Even though I am reluctant to do it, I will if it means I could get some sleep. My mom wishes they would inject it into my mouth so I quit talking so much. My mom is mad because the doctor won’t take a little extra and apply it to my mom’s face. LOL.

Well I have had my presurgical checkup and will have the surgery done on Wednesday. It is a 2 hour trip both ways to get to Omaha where my doctor is. I can’t wait to see if it works or not. Today I saw my psychiatrist. It was just a quick visit. He wanted to know how my constant checking things were doing. Was the medication doing what it is supposed to do for my bipolar diagnosis? It was all fine. We have to make a 1 ½ hour trip each way to see him. We are only there for a total of ½ hour. I feel bad my mom has to drive me everywhere. This has been a busy week. I will let you know next week how the surgery went.