Tuesday, November 10, 2009

What is Critical Illness Polyneuropathy?

Now I know the reason for all the weakness I've had and why I've hit that plateau over the summer. I seemed to be recovering with leaps and bounds in the spring through mid-July then wham! I hit that wall. Since then I've struggled with stiffness, lack of feeling in my feet and hands and muscle weakness. All of this increases with fatigue and the length of time I've been standing, walking or even sitting!

As a result of the numbness I have taken a couple falls because I didn't realize my feet and bottom of my leg had no feeling when I got up quickly to answer the door or chase after an animal. Dr. Schiller at UCLA suggested that I see a neurologist about it. I was slow about doing so and then I started getting migraines once a week. After experimenting, I'm attributing the migraines to a side effect of the medication which I take twice a week. Changing the days I take it to days when I am not under a lot of stress with driving to and fro has really helped, but it was the migraines that led me to call and schedule that neurology appointment with my old (meaning former) neurologist, Dr. Delio. He's so great! He remembered me, every detail from how we first met eight years ago when he suspected I had lupus (which he was right) to my first time with leukemia three years ago.

After hearing what my transplant experience was -- from the multiple organ failure and coma to the long stay in ICU and the hospital in general -- he put me on the table to do some tests on my nerve function. First he tested my muscle strength by doing resistance pushing against my legs, feet and hands. Then he took the sharp end of a safety pin and proceeded to stab me with it several times starting at the tips of my fingers and moving up my arm. Didn't hurt a bit. Could hardly feel it even up my arm. Then he did the same with my toes up to my ankles. Couldn't feel it, but when it got to my ankles it hurt which is probably how you would feel if you felt that prick on your toes. So I was pretty numb in my toes and feet and hands and arms. Next he took a 2-pronged "boingggg" fork to see if I could feel the buzzing made by the "boingggg" when he hit the fork and it kept ringing. He put that up to my knee which was overly sensitive and to my feet which I couldn't feel - very strange! Next he put the other end of the fork on my foot and asked if it was cold, but I couldn't even feel it. Then he showed me how cold it was on a part that can feel it! Brrrr... Then he tested my reflexes. Doctors always do that so quickly I don't know what they find.

Dr. Delio pronounced that he was pretty sure I have "Critical Illness Polyneuropathy" with leg weakness. It will take a year to recover from this. Doctors aren't sure the cause exactly, but it happens to patients who are critically ill who have organ failure and have been in the ICU awhile or the hospital a long time. It could be medication-related or from the sepsis that occured or the cytokines from the inflammatory process during that time that crosses the blood-nerve barrier or something like that. At any rate, when you're that sick the nerves get sick too. It's like an infection of the nerves. That's how Dr. Delio put it. He's also testing my B12 and Folic Acid levels to rule out another cause for my neuropathy, but was pretty sure he's got it right.

I asked if it's too late to repair the damage, and the verdict is that the sooner I were to start treatment the better, but it's never too late to make progress. So, as soon as possible I'll begin neurology-based (as opposed to sports medicine-based) physical therapy twice a week for six weeks initially. I asked him, "So just moving around the house, standing to cook dinner, and things like that won't help me get better?" He confirmed that indeed I need rehabilitation for this kind of problem. Since summer, I've wondered why I couldn't seem to get better and why I couldn't stand or walk for more than 10 min, and will I feel like an elderly person for the rest of my life (and if so, what will I feel like when I'm truly elderly!?) It sure is nice to know that I can get physical therapy now without wondering if I really need it. Until now I thought of it more as a luxury. I mean c'mon! They have a swimming pool and everything! I know God will provide all we need so I'm not going to worry about the added expense of yet another treatment. Please pray for His timely provision as well as healing for my nerves and muscle strength. Thank you!

Quick UCLA update as well: I had my monthly check-up last Friday at Dr. Schiller's. I was disappointed at first because he'd passed me off to his nurse practitioner. But she was good enough that I got over that pretty quick. I have a LOT invested at UCLA and want my money's worth if you know what I mean! So the good news was that my bloodwork was good, no infections showing which was confirmation that the antibiotics had been sufficient in knocking out my kidney infection from a couple weeks prior. I also have been on Tamiflu since Friday because Adam came down with a fever, runny nose, aches, fatigue, headache and eventually cough. Dr. Schiller prescribed it for me as a preventative.

During my time there, low and behold, who should come see me and Mike, but Russ Busby, an old chum from high school whom I've reconnected with via Facebook over the last year. I went to high school in Chantilly, Virginia and he was visiting Los Angeles over the past few weeks. After having followed our blog, and because of the miracle of Facebook, (yes miracle!) Russ visited me and got to meet Mike for the first time. We were able to catch up a bit, give hugs and even pray together before he had to leave. I love Facebook!

After my appointment was finished, we headed home, but first we called our dear friends Gene and Jeannie, parents to our dearest friends from Colorado Springs, Lisa and Rick Weaver! Gene and Jeannie live in the most amazing house in Westwood right next to UCLA. They opened their home to Mike and his mom during my time at the hospital for anything they needed, laundry, food, a shower, a place to stay. They are very hospitable and giving people. I am so blessed to know them! It was my second time visiting their home myself, but the first time I was able to climb their steps into their home! We had stopped there on my way home from UCLA the very first time I was discharged in March, and I couldn't walk yet and the stairs were too steep to attempt. This time I got to enjoy their lovely home from inside and spent a good hour getting to know these wonderful people. Gene is a crack up with all the practical joke stories we got to hear. I'll share them with you if you ask me personally, but I'm not blabbing them on the internet for everyone which I'm sure Gene will appreciate! Thanks Lisa for sharing your dad and stepmom, and we can't wait to see you when you visit Coronado!

I hope everyone has a WONDERFUL Thanksgiving this year. We'll be spending the holiday with Mike's parents in Carlsbad. Lord-willing we'll also be visiting with Lisa and Rick in Coronado. We are thankful for every day and I am putting together a gratitude journal of 1000 things to be thankful for - from the obvious to the small - especially focusing on redeeming the ugly in life by being thankful anyway. For example. #1 fallen leaves, #2 scribbled on white boards, #3 fingerprints on windows, etc. Now, you try. And the reason for my gratitude for things that don't seem so great at the time? It's based on John 13:7, which reads, "Jesus replied, 'You do not realize now what I am doing, but later you will understand.'"

Another new tradition we're doing this year is a Thanks-Giving Tree (Click here, but come back) From that blog, I downloaded a template of a tree to print out on cardstock and colored leaves of different kinds to print out. Each person will have his own tree. Each day we'll write one thing we're thankful for today and on another leaf one thing we gave of ourselves to someone else. At the end of the month there will be a whole tree of ThanksGiving which we'll all read to each other.

What are some traditions you'll be incorporating into your celebration this year? Comment below.

Here's the verse for today's blog. I thought it appropriate to illustrate to whom we are to show true thankfulness, true THANKSGIVING! As a certfied foodie, I confess that in the past I have lusted after many a Thanksgiving dinner. When you are carving into your turkey this year, will it be the prayer of thanks that is motivating you or the greed of the feast?

Luke 17:11-19

Ten Healed of Leprosy
Now on his way to Jerusalem, Jesus traveled along the border between Samaria and Galilee. As he was going into a village, ten men who had leprosy met him. They stood at a distance and called out in a loud voice, "Jesus, Master, have pity on us!"

When he saw them, he said, "Go, show yourselves to the priests." And as they went, they were cleansed.

One of them, when he saw he was healed, came back, praising God in a loud voice. He threw himself at Jesus' feet and thanked him—and he was a Samaritan.

Jesus asked, "Were not all ten cleansed? Where are the other nine? Was no one found to return and give praise to God except this foreigner?" Then he said to him, "Rise and go; your faith has made you well."