Wednesday, March 21, 2012
1 Month Update: Ashley
After the surgery, I was discharged from the hospital on Saturday 2/25. That first week I slept and rested and even spent a few days with Kate and Jeremy. I was able to also start exercising on the treadmill (2.0 mph for 30 min) and doing physical therapy exercises. The next Saturday, March 3rd, Jeremy, his friend Todd, my mom, and I attended a heart/lung transplant luncheon. We both got up and spoke (I refused to do it by myself). It was a really nice luncheon and I believe Jeremy posted the video of our speech.
When I got home that day, I had some severe urine discoloration and was readmitted to UNC for dehydration and nausea. I was in the UNC from Saturday, March 3rd till Wednesday the 7th. I spent most of my time in the hospital sleeping. When they discharged me, I went and stayed again with Jeremy and Kate in Chapel Hill. At that time, I was hydrated, but the nausea was continuing.
Then the nausea turned into pain and the pain became debilitating. My boyfriend Lee had to rush me to the ER on Monday night (3/12) where I was given a shot of diladid. My bloodwork and CAT scan came out ok, so they let me go home. I had an appointment early in the morning at UNC, so I got 40 minutes of sleep and then headed to Chapel Hill with my dad. By the time we got there, the pain had returned and by the time I reached my appointment location, I was in so much pain I could barely speak. They wheeled me down to the ER where I was eventually given 2 more shots of diladid and readmitted to figure out what was going on.
During the 5 days in the hospital, my medical team ran several tests. After an endoscopy, bloodwork, and an MRI it was concluded that my problem was 2-fold. I have probably been accidentally exposed to gluten and my MRI showed cysts that are bursting on my pancreas. The pain I have been going through can only be compared to pancreatitis. I use to get pancreatitis all the time as a teenager, but have not had it since August 23, 1998. I remember that because it was my 2nd day of orientation at Catawba College. Unfortunately, there is nothing anyone can do about either diagnosis. So, my surgical team has decided I should try and control the pain in a way similar to Fibromyalgia patients. They have started me on Cymbalta because it will increase my seratonin levels, which will help naturally mask my pain. Let's be clear, I'm not thrilled about this treatment. I don't want to take a medication that is going to alter my brain chemistry when I don't suffer from depression. I do, however, have anxiety from time to time, so I am choosing to look at this course of treatment as a way to help me with my anxiety (maybe I won't flip out every time I have to use a public restroom!) and I certainly can't live my life in agonizing pain or doped up on opiates. My doctors are insanely intelligent, so I am going to do whatever they tell me to do, but no one says I have to like it!
I hope that in 6 months I can report on how much this new medication has improved my life and how the doctors proved me wrong. Believe it or not, I like better when they do that than when I am the one having to teach them. And yes, sometimes that's how it works.
The day I got out of the hospital this last time (this past Saturday) Lee and I went to a wonderful dinner at Bonefish Grill. Last summer my childhood friend Nicole organized a charity golf fundraiser for me a neighboring city. Coincidentally, her father won a dinner for 10 to Bonefish. They invited Lee and me to go with them. We were treated to almost everything on their menu. This worked perfectly for me because they have a gluten free menu, so I knew exactly which foods I could eat and which to avoid. We had a great time and really enjoyed the company.
Since this last discharge on the 17th, I have had a little bit of nausea, but no pain. Jash is working perfectly!!!!! My creatnin waivers between .7-.8. It will probably increase as I put back on muscle mass (I'm only 89-90 lbs right now), but that is only an indication of muscle, not of my actual kidney function. I am focusing on my liquid intake to avoid dehydration again. I hit a record of 91 ounces on Monday! This Friday I go back to clinic for blood work and hopefully to have my line taken out. I will be returning to work with Joshua this Saturday and to the college on Monday. Next week I have an appointment with my neurologist to get the approval to get my license back. Slowly, but surely, I am getting my life back!
*There will be a 1 month update from Jeremy tomorrow*