Along for the Ride

Today I took a day off of work to visit UT Southwestern's neprology department and discuss my options for continued treatment. Thankfully, Mike was able to go with me, so I had lots of great support. The nephrologist spent over an hour with us discussing my options. I had planned to get a fistula surgery done next Friday so I would be ready for hemodialysis. However, today, after discussing my lifestyle and health goals, the doctor suggested peritoneal dialysis. A website that describes this is: http://kidney.niddk.nih.gov/kudiseases/pubs/peritoneal/ Basically, I would have a soft catheter implanted into my abdomen wall right below my belly button. Then, my abdomen would be filled with about 2 liters of dialysis solution. The toxins and wastes in my blood, which are usually filtered by the kidneys, would then be absorbed by the solution. At night, I would hook myself up to a pump that would exchange the dirty fluid for fresh solution while I sleep. I would probably have...

Earlier today, I was updating one of my classes about my medical situation, letting the students know that I would be absent a couple of days soon for surgery procedures and whatnot. My students are bright, and they know when things aren't right, so I try to be open and honest with them. After I explained the purpose of a fistula and how dialysis works, I asked the kids if they had any questions for me. One boy raised his hand, and in a timid voice, he looked at me and said, "Are you scared?" I had to fight back tears because I was so moved that he was concerned about my state of mind and vulnerability. I told him that yes, I was scared, but that I have a lot of wonderful people in my life that are supporting me, and that mom is going with me to the surgery. Laughing, I told them that I'm 33, but I'm never too old to want my mama. The kids thought that was funny, and we all had a good laugh. That moment stuck with me all afternoon, though. I've had p...

Today I met with a vascular surgeon to discuss the next stage in my kidney adventure: the installation of an arteriovenous fistula. A fistula is a type of vascular access for hemodialysis. Since dialysis involves filtering so much blood, the vein used to access the blood has to be big and powerful. Basically, the surgeon will connect a vein and artery in my upper left arm. After doing an ultrasound, it was determined that my best vein is located on the upper arm, the cephalic vein. While they typically try to avoid the dominant arm (I'm left-handed), that vein looks the best, so that's the plan. The surgeon said that the incision will be approximately 2-3 inches long inside my elbow. The surgery is an out-patient procedure, and it's scheduled for Oct. 7. I should also be under complete anesthesia, thank goodness! The procedure should take about 45 minutes, and during the four weeks after the surgery, the fistula should develop as the vein and artery "grow"...

While I'd like to say that the last month has been filled with exotic vacations and destinations, that isn't quite the case. However, I still had a pretty "eventful" July. First of all, Mike got a job! On July 6, he got a call from Careington International asking him to be their in-house graphic designer. Not only is this position in the field he loves, but the company is also located in Frisco, which means no more waiting at the bus station! We'll still be carpooling, but with his work only 6 miles from my school, it'll be easy! He's been working there for about a month, and he loves it. He's even gotten some "kudos" for a commercial that he designed because it's been bringing in a bunch of new clients. I'm so happy that he's happy... and we feel so blessed that he was only out of work for 1 week. Back in 2006, we made the tough decision to work together so Mike could change careers. He was so unhappy in his previou...

I'm not sure why I find this humorous, but I think it's sort of funny that I have my own little "routine" at the hospital now. I know most of the nurses, and they know me. They stop by to watch TV with me or chat. I know about poor Annette, who used to come draw my blood every morning at 4 am until I got the central line - so now blood has to be drawn by my nurse. Annette is helping to raise her 2 year-old grandbaby, and her 23 year-old daughter just found a lump in her breast, but she doesn't have health insurance because she's too old to be on her mom's (the Obama law hasn't kicked in yet), and she isn't in school anymore. My heart breaks for her. Sonia, the night nurse, has a son with asthma and severe allergies, and it kills her to have to give him shots, but that's why she became a nurse. It's been interesting.... I'm actually meeting lots of new people. I usually have Zen-ish music playing in the evenings, or white noise, ...

I haven't blogged in a while, so it's definitely time to catch up. I just reread my last post, and I can tell that I was NOT in a good place then. I struggled to finish the school year, but with the help of my amazing friends and colleagues, I made it to the finish line. Unfortunately, just a few days after the last day of school, I crashed and burned. The Friday of the last week of school, June 10, I had what I call my "loopy day". Before then, I had had a few little episodes where I would be standing in the kitchen about to give myself insulin or take meds, and I would freeze. It's hard to describe, but it felt like I couldn't separate what was real from fantasy. I couldn't get my body to move. I would feel "stuck". I could usually get myself walking, and it would clear up, but driving was difficult, and I couldn't concentrate or focus on anything. On Friday morning, I got up and got ready for inservice for SIGS, but I was froze...

I hate steroids. I have been on 80 mg./day of prednisone for 4 1/2 months, and the side effects are killing me. This last Friday, I had an IV infusion of solumedrol (prednisone), which pushed my blood sugar up near 700. I spend all weekend dizzy, disoriented, and confused. Sunday night, I finally gave in and went to the ER for some insulin. It turns out I have steroid-induced hypoglycemia. So now, I have the joy of giving myself insulin shots and checking my blood sugar 4 times a day. My nephrologist finally started tapering my prednisone... 70 mg. a day for 2 weeks, then 60 mg., etc. It seems my creatinine levels are down to 3.0, which is great news because it signals the beginning of remission. My hope is that I can stop the insulin once the steroid is reduced enough. Giving myself shots is a pain, and it hurts. I'm looking forward to getting back to feeling like my old self soon. The good news is that I may not need to do the Rituxan infusion therapy yet. If I can g...