Along for the Ride

I'm sitting here this morning, sipping a cup of coffee and listening to some Ella, and I had an urge to write up another blog entry. I don't really have much news, medically speaking. I was supposed to have my dialysis catheter surgery last week, but it was cancelled at the last minute because my surgeon had to do a liver transplant, and the operating rooms were full at UTSW. So, we're waiting on that to be rescheduled. In the meantime, my doc is checking my blood levels to make sure I'm ok to wait. I'm feeling great, though. Very strong and energetic. This has been a wonderful week. Mike's parents were able to come and visit, so I made a Thanksgiving meal here at home for the four of us. It was quite yummy, if I may say so myself! We spent a lot of time relaxing at home in our pajamas playing XBox and watching movies. I also got a lot of my "honey do" tasks completed, like cleaning out my filing cabinet and organzing some things around t...

These last few weeks have been pretty hectic with doctors' appointments, so it's probably time for another update. I'm in the process of transferring my care to UT Southwestern, so I've had a lot of appointments recently and will have several more in the near future. Regarding my eyes, I'm healing nicely after the cataract surgery, and I see my ophthalmologist again next week for another follow-up. I'm hoping to schedule the left eye surgery for winter break to avoid having to take more time off of work. I also met with a vascular surgeon at UTSW for evaluation for a PD catheter. I'll be having that done in 2 weeks. It should be a one-day laparoscopic procedure, and I should be able to go home from the hospital the same day. However, I will probably be sore for several days afterwards, so I'm taking a couple of days off of work to allow time to recoup. After the catheter is inserted, I'll be going to a 4-5 hour training and clinic session...

Medically speaking, things have escalated with my situation pretty recently, so I figured it was time for another update. There are three main areas of "focus" right now. It seems like just as I get one thing under control, another issue pops up demanding my attention. I feel like I'm playing that game at Putt-Putt where you bash the plastic alligators on the head. No matter how many times I bop them with the big paddle, they just keep coming back! So alligator one is still my kidneys... On Thursday of last week, I had a training session at the DaVita dialysis clinic for UT Southwestern. The session was very informative. I met with a nurse who explained the whole peritoneal dialysis process to me - including the placement of the catheter, training, and cleaning. I also met with a social worker about the financial and emotional aspects of dialysis. I was so grateful to be able to tell her about my amazing support system of friends and family. Then, this past Mo...

Today was a completely nutty day. I'm so far behind with grading at school, which is really stressing me. We just started a new unit, so there are a lot of very active teaching days. I don't know why movie and television directors depict teachers sitting behind their pristine desks quietly grading papers while the students work. In my experience, that's not anywhere close to reality. We have all of 50 minutes each day to try to catch our breath, return phone calls and emails, plan curriculum, make copies, and grade. Add in the fact that I've had to head to doctors' appointments nearly 10 times in the last month, as well as before/after school meetings, and it's no wonder I had to restart my blood pressure medication! So anyway... I've been a bit anxious lately because I feel like I'm drowning at work and just need a good 2-3 days of uninterrupted work time to catch up. That's the irony of education... so much of our job doesn't even inv...

Yesterday, I met with my regular nephrologist to discuss my recent health developments. During our discussion, there were several things that came to light. First of all, he explained that I will most likely lose all of my hair eventually. Apparently, this summer I had full-blown sepsis caused by cellulitis. That was what landed me in ICU for several days. It's very common to lose hair due to a process called telogen effluvium in which the normal cycle of hair growth and death is disrupted by severe illness, infection, or medication. He also let me know that I may lose my hair periodically throughout the rest of my life, even after it grows back this time. Any time my body goes through trauma, such as kidney transplant, I will likely lose my hair. Yea! :) I told him that I was tempted to shave it all, even though I would look like a cancer patient. His response was, "Well, Jennifer, you are a cancer patient. Just without the cancer." Good point, Doc! We also...

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...

Yesterday I had my first "post-hospital" follow-up appointment with my nephrologist. While we got some good news - my white blood cell counts are higher - 7.5 - which allows me to go back to work when I'm ready (this coming Monday), there were also some things that are pretty concerning. With everything my body has been through with the hospital and all the infections, my kidneys have taken a pretty sizeable hit. My creatinine levels are now at 5.57. Technically, I should be on dialysis now. We are still hoping to avoid that, though. My doctors (Dr. L. my rheumatologist and Dr. C. my nephrologist) are devising a new treatment plan for me. It's a somewhat experimental treatment plan using an infusion drug called Rituxan. There have been some recent studies that have shown it to be very effective in the treatment of Wegener's granulomatosis. Some of the side effects can be pretty scary, but I'm hoping that is simply because I've been researching onl...

I tried to start a blog about my most recent "renal adventure" several times, but I've discovered several vital truths to the hospital experience. Something about the pasty walls covered in cheap hotel paintings, beeping machines, needles, blood pressure cups, "potty hats", consistent interruptions, numbness-inducing excuses for furniture, horrible food, lukewarm showers, crunchy linens, flat pillows, and those lights that never go off keeps any ounce of creativity from entering the brain. Every time I tried to sit down and write, I ended up with a listing of medical drivel that bored me to sleep. Or maybe that was because I never really slept, so I was in a catatonic state for about 9 days. The worst of it was an hour one afternoon that I spent cleaning out my hairbrush. I don't mean that I was watching TV and cleaning out my hairbrush. I was sitting in a chair, and slowly cleaning each bristle of my hairbrush. That was a stellar moment and a complet...

It's hard to believe that one week ago tonight, I was sitting in a waiting room with my mother, brother, and husband, eating BBQ sandwiches and carrying on conversation while my dad was receiving a double lung transplant. These last 7 days have been a crazy whirling blur. Last Sunday, my brother and I were talking on the phone when my dad called in to tell me that they had just gotten a call from the hospital, saying that they thought they had a set of lungs for him. Immediately, I felt numb. We had been told to be cautious about this, because it could be a "dry run" and there were a million reasons why the transplant might not proceed. My dad told us that they would call us when they knew more, so Mike and I went ahead to get our hair cut as we had planned. I don't really remember much of that afternoon because I know I spent a lot of time wandering aimlessly around the house, feeling like I should be doing something, but not having anything to do. Finally, ar...

It's been a while since I've posted a straight "medical update" on my situation, so I figured one was due. Last week I was able to meet with my rheumatologist. He reviewed my most recent blood results and some more detailed results from my kidney biopsy. Then, this last Monday, I saw my nephrologist for a check-up, and while the majority of that visit is a blur, there were some highlights worth sharing. The last few lab results have shown some more stability in my kidney function. On March 16, my creatinine level was at 3.8. On March 28, it was at 3.76 (essentially the same). My doctors decided to increase my cytoxan (chemotherapy) meds on 3/30. Then, on April 8, my creatinine was at 3.84. We started "official" treatment on Jan. 18, so April 18 (tomorrow) is my official 3 month mark. They say it takes a full 3 months before these meds really start to take effect, which is why my kidney function continued to deterioriate, even after I started trea...