Wednesday, October 26, 2005

Weak At The Knees

The other day I received text messages informing me that a close girl friend of mine had suffered a stroke, was mildly paralyzed and was rushed to the hospital. I wasn't able to go to the hospital that night to see her, but a common friend of ours who did texted me: "She has Guillain-Barre Syndrome."

Of course I looked it up online. This site explains it well, but since it's a distant healing rather than a medical/scientific site, I looked at Wikipedia. Then I dug up a really useful site, the Guillain-Barre Syndrome Support Group, based in the UK. The best thing about this last site is that it contains testimonies of those who have experienced and recovered from GBS. Reading those accounts heartened me. I couldn't bear imagining this friend of mine permanently immobile and depressed.

I visited my friend - let's call her Rachel - yesterday afternoon after lunch. but most of the time I was there her mom and the nurse were busy bathing her so I had to wait outside.

When I first arrived I was able to say hi and ask how she was. "Hi, I have GBS."

This was what I noticed:

1. She was lucid, sitting up straight. She talked slowly and carefully, her voice a bit slurred. She said she couldn't smile because she had to support her chin with one hand while talking, because of the mild paralysis in the muscles of her lower jaw. She was connected to a dextrose drip.

2. Her fingers were nimble enough to receive and make short text replies to me on her cell phone.

I was relieved because I had expected worse circumstances.

On her way back from the restroom her mom asked me to get a male nurse to assist them back to the hospital room because she had to hold the drip. Rachel was able to walk slowly, but I realized her legs couldn't voluntarily support the weight of her body. Her mom and I propped her up on the bed, because the bed base was high. Then she asked to wear socks because her feet felt cold (she couldn't bend down to put them on). She told me she could feel the cold, but if her foot were dipped in water, she couldn't feel the sensation of wetness. She asked me to hold her hand, and it was cold and dry. Apparently she could not generate/regulate her body temperature (something to do with the nerves, I don't know how to explain it), but she could feel the warmth of my hands.

I asked if she was able to eat solids. She said she eats by supporting her lower jaw with one hand. "So there's nothing wrong with your tongue?" I asked. None, she said. She had solid food for lunch, despite the drip. The drip was there because earlier she had no appetite. Her blood pressure was up and down, and when she sat up from a prone position she felt dizzy. After she threw up she said she felt the pressure in her esophagus released, so then she actually felt hungry. She drinks water from a glass (doesn't need a straw), but can't stretch out her arm to get it from the table. She says she doesn't like to lie down for long periods without changing position, because the muscles in her back ache. When she lies down she puts a folded blanket between her knees for warmth and circulation. With some effort she can move each leg forward and backward, as long as she's lying down. She likes to be bundled up in a coverlet because her extremities constantly feel cold.

Apparently, this is what happened:

1. Last Wednesday, she woke up feeling numbness in her toes. She still went ahead with her duties. Through the weekend, she felt a tingling sensation climbing up her legs. By Monday, she was still able to drive to work. However, when she got there, her blood pressure shot to 160/100, and she passed out. One of her colleagues took her to the Infirmary, where she was given medicine to lower her blood pressure. But when the doctors noted her mild paralysis, they concluded she must have had a stroke. So her parents rushed her to the hospital for tests.

2. After the battery of tests and the CT scan Rachel was scheduled for an MRI. Early this morning the results of the CT scan came in and they discovered that her brain was undamaged - ergo she NEVER had a stroke at all. And best of all, there was NO brain damage. So when the neurologist interviewed her and she told him of the sequence of events leading to the hospitalization, he diagnosed her as having Guillain-Barre Syndrome (GBS).

Rachel was aware of GBS, because she had had one male student who suffered from it last year. One day while standing at the bus stop, he just collapsed, his legs buckling beneath him. He missed two months of classes, and when he came back, he was just barely able to walk. He reported to the class his experiences with GBS, so when the neurologist made his diagnosis, Rachel was able to grasp what was happening to her.

But Rachel's mom still doesn't understand what GBS is, or whether people are able to recover. I told her about the GBS Support Group, and the accounts I'd read. Rachel said, "If I'd really had a stroke, my brain would be permanently damaged. At least the doctor said, with GBS, there's a beginning and an end." According to the GBS site, the condition clears up of its own accord, only you can't predict when. My guess is, with the immunoglobulin treatment and the physiotherapy, Rachel actually has a chance of recovering most of her motor functions any time within six months. Rachel probably wouldn't be able to go on mountain hikes but at least she'd be able to walk short distances unaided, or even be able to drive again with a companion. The possibility that the quality of her life can still improve is what counts.

The duration of the hospital stay, the cost of physiotherapy, and most of all, the cost of the immunoglobulin medicine worries her mom. Rachel asked me if I could ask all our friends to help raise funds for the medicine. I was shocked when her mom mentioned the cost of treatment. It's estimated that a GBS patient needs 5 vials of immunoglobulin a day for 7 days. However, the premier brand of immunoglobulin costs something like PhP 13,000 PER VIAL. If you calculate it, that's the amount you spend on a CAR. So Rachel's mom told me that she asked around for a cheaper alternative that was just as effective. She found one being supplied by a company somewhere in Manila, that was priced at PhP 5,100 per vial. The 35 vials Rachel needs for the treatment will then cost just under PhP 200,000 (less than half the other total, but still a hefty expense). So I said if they could get me the name of the cheaper alternative I could try to source it in the US and ask some relatives to bring them early next year when they come for our family reunion. Or we could ask our high school batchmates in the US to sponsor vials for the treatment. Or we could write to charity organizations abroad for help. Anyhow, I said I'd ask our other friend Francine to help me write some letters. We'll try to set up a bank account for donations as soon as possible.

If, after reading this, you'd like to help in any way, please send us an email or leave a comment below. We'd really appreciate it.