Catching Up....

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 frozen. I stood in the bathroom looking in the mirror for over an hour. Finally, Mike came and got me in bed. I thought I was depressed or something, so we called the doctor and got some Celexa. This was after I spent an entire day in bed, unable to will myself to move. I was petrified that I was losing my mind. Mike would stand in front of me and talk to me, and I would just look at him. I thought I was dreaming. He kept asking me if I could speak, and I was thinking "of course I can talk", but I couldn't get myself to speak. It was terrifying. Mike called my doctor, got my prescription, and stayed home with me that day.

Saturday, I felt better, so I thought it was just a fluke, but then Saturday evening came around and I started feeling the same way. Sunday was more of the same, but it wasn't as bad as Friday. Sunday night I didn't sleep at all. Monday, I got up and took Mike to the bus station, then drove to summer school. I still don't know how I got there safely, but somehow I did. I was lucky...

When I got to work, my co-teacher took the lead and started class. When it came time for me to read the role, I couldn't read the names. I was losing focus so easily that I couldn't process anything. I don't know how it happened, but somehow the principal came and got me and took me downstairs. She was amazing... She's a family friend, and she was so patient and understanding. She called my mom, which was exactly what I needed. When I came back downstairs with my things and saw my mom, I burst into tears. I hadn't seen my mom in months because of my CMV infection, and I was so exhausted. I just needed someone to take control and take care of me. My mom truly saved me that day. She took me to the doctor, who sent me to the ER. Knowing that I might be admitted, my mom took me to the house to pack. One thing I've learned to do is pack for the hospital!

In the ER, they told me that my potassium levels were extremely low. They gave me a huge infusion of potassium chloride, two units of blood, and took a ton of blood samples. I even met with a psychologist. My mom was with me the whole time, so I was really able to relax knowing that she was hearing everything from the doctors. They admitted me Monday afternoon (June 13), and I've been in the hospital since then.

After being admitted, I was told that I had a minor case of cellulitis (skin infection) on my left calf, a small infected absess in my abdomen (near where the other ones were), and I still had this lingering Cytomegalovirus (CMV) in my blood. My blood also tested postive for Cryptococcus, which is a fungus that causes fungal meningitis. The symptoms of fungal meningitis include confusion, behavioral changes, and nausea, among other things. Untreated, it can lead to permanent brain damage and death. In other words, it can be very serious. My creatinine levels were also really high.

I've had several ultrasounds to check on the abdomen absess. They did an MRI of my brain. I had a CT scan of my lungs to follow-up on a spot they found a while back. That spot had cleared up, but they found a cluster of new spots, so I had a broncoscopy to get biopsies of the new spots. While we're still waiting on the cultures to "grow" to see if there is fungus in my lungs, the preliminary reports showed bacteria, so I've been on IV antibiotics to take care of the cellulitis, the abdomenal absess, and the spots on my lungs. They don't think it's Wegener's in my lungs, though, so that's good. I had a spinal tap where they pulled spinal fluid to see if I have fungus in my brain or spinal fluid. We're still waiting on final culture results, but preliminiary reports are all negative. I had a high titer score for the fungal antibody, which implied that the fungus had spread. So, my infectious diseases doctor brought out the "big guns" and is treating me with an anti-fungal IV called Amphotericin B, which the nurses have nicknamed "Amphoterrible" because of its side effects. The treatment for fungal meningitis (which is what they are treating me for until we get final results that are negative), is 4 weeks of Amphotericin B infusions with daily blood counts, followed by a year of oral Diflucan. Since we didn't start the Ampho until last Sunday, I've probably got 3 more weeks in the hospital, unless they decide to let me go earlier. That'll make a total of 5 weeks in the hospital this summer...

Now for an update on Thelma and Louise.... One of the main reasons they admitted me was because my creatinine levels had spiked up to 5.56 or something crazy high. So the first test I had done was a repeat kidney biopsy. Unfortunately, out of the 20 "tubules" from the sample they pulled, 17 were fibrotic, or scarred beyond repair, and the other 3 were severely damaged. Essentially, I have "end stage renal failure", aka: my kidneys are shot, Elvis has left the building, and Thelma and Louise have driven off the cliff....

I still have SOME residual kidney function, but it's kind of the end of the road as far as Thelma and Louise are concerned. The good news is that they didn't find any active Wegener's granulomatosis, so I suppose our mission is accomplished... we did achieve remission. Unfortunately, my kidneys were the price we had to pay. It just moved too fast.

At this point, this is the plan: they have been steadily reducing my predisone (I'm already down to 30 mg./day from 80 mg./day), and we're going to keep reducing it until we get to about 10 mg./day as a maintenance dose to prevent relapse. We've also stopped the oral chemotherapy meds. This is all in hopes of rebuilding my immune system. Meanwhile, I'm continuing to receive IVs of antibiotics twice a day, as well as the antifungal IV. They had to install a central line in the side of my neck since my veins are so weak, and we have to preserve all the arteries and veins in my arms for dialysis. Also, these drugs are REALLY hard on veins, and regular IVs have to be replaced every 3 days. Between that and daily blood draws, blood sugar checks every 4 hours, and insulin shots, that's a lot of needle sticks.

Which brings me to the next step in Thelma and Louise's journey. When I leave the hospital, my nephrologist wants me to meet with the nephrology department at UT Southwestern, where my dad got his double lung transplant, to see if they have any other options or suggestions that we've missed and begin taking steps toward kidney transplant.

Overall, a lot has happenend. A couple of days after I was admitted, I was talking to my mom on the phone one night giving her an update from my doctors when I had a panic attack. That was probably the most traumatic experience I've ever had in my life. I truly thought I was dying, and to this day, I think I know what it will feel like to have a heart attack. My chest siezed up, and I couldn't talk. My mom said I started making these gutteral noises like those sound effects you see in comic strips. They gave me a Valium, which helped knock me out, and I woke up feeling ok, but I truly thought I was dying. This happenend right after I found out the results of the kidney biopsy, and it was like I just couldn't handle the stress anymore.

In fact, I think that's a lot of what happened with getting me here overall. Yes, there are infections that caused some of my symptoms, but I also know that I was feeling extremely disheartened and overwhelmed before I was admitted. I wouldn't say that I'm excited about my new "path" of dialysis and transplant. I know it'll be a long and hard road that will involve sacrifies from myself and those I love. But I've also had the gift of time. When you're in the hospital, it's no secret that the hours can creep by slowly and endlessly, but in a way it's been good for me. For the last couple of weeks, I've been able to let go of my stress and worry about meds, insulin, and even what to fix for dinner. All of that is taken care of, so I've had time to really think and process everything.

Last Friday, we got another curve ball thrown at us when Mike was notified that he only had 2 weeks of work left before he was being laid off. We were anticipating him possibly losing his job in September, but we thought we had more time. Nope... July 1 is the day. So now we have the stress of a lay-off on top of everything else, and we won't even get started on the medical bills.

Even with that, though, I was sitting in my hospital room one day, and I was filled with a deep sense of calm. For some reason, I just felt that everything would be ok. It seems crazy.... I mean, 5 weeks in the hospital, medical bills coming in, Mike lost his job, I lost my summer school income, but I felt calm. Thankfully, I haven't lost that feeling. We're taking things one day at a time, and I'm actually filled with an immense sense of gratitude. Many people don't have the option of having a transplant. My doctor refers to kidney transplants as "routine" because they have such a high success rate. And, I have the "luxury" of having a life-saving option - dialysis - that will keep me alive until I can get a transplant. Not only that, I have people who are willing to donate a kidney. My husband Mike has already offered if he's a match, which means so much to me. Even if he doesn't match and it doesn't work out, I'm so incredibly moved by his desire to donate. I even have friends that have wanted to donate, which just blows my mind.

I have to prepare my body for transplant, which means I need to be infection free, in remission, and be within my target weight BMI. So far I've lost about 30 pounds, so my hope is that with the prednisone taper, I'll be able to lose more this summer and fall. In the meantime, I may have to start dialysis, and I'll have to get a fistula surgically installed in my arm (which takes 3-4 months to heal). We're hoping to hold off on dialysis for as long as possible, so as long as I continue to feel good, I can hopefully avoid having to get a main port installed in my chest for temporary dialysis. At this point, though, if that's what I have to do, then I'll do it.

I've learned so much about myself, my family and friends, and life in general though all of this. I've always thought that things happen for a reason. I don't know why our poor family has been though so much this last year, but I do know that we're closer and stronger because of it. I found strength in myself that I didn't know I had, yet I also found that I need others more than I realized. I need my mom. I need my husband. I need my friends and family to lean on for support. My brother has been amazingly supportive, as well as his family. I've learned to treasure each moment. From watching my nieces laugh together or a warm hug of a friend. Each of those moments is precious, and I'm learning just how valuable they are. I've also learned to ask for help. Being "helpless" for several days reminded me that sometimes you just have to rely on the help of others.

I know my journey isn't complete, but it's taken a very sharp turn, and I'm working through to acceptance. I feel the love and prayers of all the amazing people who are thinking of me, though, lifting me up and encouraging me to continue on. So, while Thelma and Louise may have driven off the cliff, we haven't crashed yet. Hopefully we'll land on our feet, and I'm keeping my eyes open so I can enjoy the view.