What Were YOU Doing Six Months Ago?
Six months ago today, I received two wonderful, life-saving lungs. It still catches me off guard that I can run errands in the morning and still have energy for a walk in the evening. I can bend down to pick up a pile of clothes from the floor and not be out of breath on my way back up. Scot and the kids have to catch up to ME when we’re walking together. I can hop in the shower without all the effort to protect my central IV site. I’m still seeing people for the first time since surgery and I see them try to place the differences in me: my coloring, the shape of my face, my shorter hair (have I mentioned my hair's starting to fall out?), the scars on my neck – it’s all just a little different than the Kim of last fall.
My body is still in healing mode. Although I deal with many side effects from my 17+ daily meds, my biggest issue right now is combating the migraine headaches I’m getting. Migraines occur, in the 20% of the population who are genetically pre-disposed to them like me, because the brain gets in low energy mode then has a temporary shutdown which sets off the alarm – and that alarm is the pain of a migraine. The key is to keep your energy up: get good exercise, food, hydration, sleep, relaxation, low stress, have fun with people (seriously, my neurologist really stressed that last one). I feel like I’m doing an okay job at these things: I’m sleeping well at night and getting naps during the day. I don’t feel particularly stressed (except, ironically, about the migraines). I’m exercising. I’m having fun with people (anyone want to do lunch? It’s for my health, ladies!). But these migraines keep coming, hard and long. So now we've added another daily prophylactic medicine to my war chest: Gabapentin. This is a neurological medicine that will hopefully help my brain conserve energy to avoid “shutdown” mode -- I think my brain is spending a lot of energy just trying to heal still from the surgery, get used to these lungs, manage my crazy suppressed immune system and all these drugs I'm taking. I’m to take it every evening about 7pm, since it’s generally late evening or early morning when I get my headaches (and by the time I feel the pain, it’s too late to do much about it).
And I've been cleared to travel so in five days, the kids, my mom, Ollie and I are driving down to California! It’s my first time out of the state in two years and I am awfully excited. A little nervous about “my plans” versus “the migraines” but I've learned that when my village is able to pick up the slack because I’m in the hospital for six weeks, dealing with me having a migraine is going to be a piece of cake. And Scot will be there for the second week and he's all-too-prepared to deal with my sudden incapacitation so we'll be fine.
I’m sure this will be an emotional trip for me because 1) I haven’t really thought about the transplant for a while and I find when I do, I get caught up in the “holy crap, I went through all that and lived?!” and 2) I’m emotional and a crier anyway. So Californians, be prepared.
In the spirit of getting caught off guard talking about my transplant…last week, I was getting two watch batteries replaced by the watch repairman in his little shop in town, tucked away behind a strip mall. We were chatting and I asked if he’s noticed that the prevalence of cell phones has cut into the watch business – why wear a watch when you’re carrying the time on your phone? I mentioned I’m starting to wear a watch again as I don’t have to carry my phone with me all the time now, since I’m not on a transplant list. Then the conversation turned to my transplant and a little about that experience. I didn't really expect his reaction: he was surprised and so very happy that I shared this with him, that I was a walking embodiment of a success story. It made his day to see something that didn't end in tragedy but in joy and that it's all too rare we see the good and miraculous outcomes.
And, he gave me a hefty discount on the batteries. That benefit of sharing my story hadn't occurred to me. I wonder if the Walt Disney Co. will do something similar…
My body is still in healing mode. Although I deal with many side effects from my 17+ daily meds, my biggest issue right now is combating the migraine headaches I’m getting. Migraines occur, in the 20% of the population who are genetically pre-disposed to them like me, because the brain gets in low energy mode then has a temporary shutdown which sets off the alarm – and that alarm is the pain of a migraine. The key is to keep your energy up: get good exercise, food, hydration, sleep, relaxation, low stress, have fun with people (seriously, my neurologist really stressed that last one). I feel like I’m doing an okay job at these things: I’m sleeping well at night and getting naps during the day. I don’t feel particularly stressed (except, ironically, about the migraines). I’m exercising. I’m having fun with people (anyone want to do lunch? It’s for my health, ladies!). But these migraines keep coming, hard and long. So now we've added another daily prophylactic medicine to my war chest: Gabapentin. This is a neurological medicine that will hopefully help my brain conserve energy to avoid “shutdown” mode -- I think my brain is spending a lot of energy just trying to heal still from the surgery, get used to these lungs, manage my crazy suppressed immune system and all these drugs I'm taking. I’m to take it every evening about 7pm, since it’s generally late evening or early morning when I get my headaches (and by the time I feel the pain, it’s too late to do much about it).
And I've been cleared to travel so in five days, the kids, my mom, Ollie and I are driving down to California! It’s my first time out of the state in two years and I am awfully excited. A little nervous about “my plans” versus “the migraines” but I've learned that when my village is able to pick up the slack because I’m in the hospital for six weeks, dealing with me having a migraine is going to be a piece of cake. And Scot will be there for the second week and he's all-too-prepared to deal with my sudden incapacitation so we'll be fine.
I’m sure this will be an emotional trip for me because 1) I haven’t really thought about the transplant for a while and I find when I do, I get caught up in the “holy crap, I went through all that and lived?!” and 2) I’m emotional and a crier anyway. So Californians, be prepared.
In the spirit of getting caught off guard talking about my transplant…last week, I was getting two watch batteries replaced by the watch repairman in his little shop in town, tucked away behind a strip mall. We were chatting and I asked if he’s noticed that the prevalence of cell phones has cut into the watch business – why wear a watch when you’re carrying the time on your phone? I mentioned I’m starting to wear a watch again as I don’t have to carry my phone with me all the time now, since I’m not on a transplant list. Then the conversation turned to my transplant and a little about that experience. I didn't really expect his reaction: he was surprised and so very happy that I shared this with him, that I was a walking embodiment of a success story. It made his day to see something that didn't end in tragedy but in joy and that it's all too rare we see the good and miraculous outcomes.
And, he gave me a hefty discount on the batteries. That benefit of sharing my story hadn't occurred to me. I wonder if the Walt Disney Co. will do something similar…
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| This is just one morning's pills. I get waterlogged taking these. |
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Alayne