Tuesday, July 29, 2008
Monday, July 28, 2008
Sunday, July 27, 2008
Will had a bout of very serious lung infections just before and after Liam was born. As part of trying to get all these infections under control, Will was prescribed TOBI. TOBI is an inhaled form of tobramycin -- a strong antibiotic often used in CF care. Tobramycin is good for getting rid of infections but it has a risk of destroying ones hearing and vestibular system. The vestibular system is part of the balance system, and provides most of the input to the brain on movement and equilibrioception, or your sense of up and down and, well, balance. Will had taken both tobramycin and TOBI before transplant and had always been okay. TOBI generally is described as much safer than tobramycin because it is delivered right to the site of the infection (the lungs and, in Will's case, the sinuses too) and it is thought not to concentrate in the bloodstream the way IV tobramycin might. In fact, my impression is that it is considered by most people and most doctors (certainly all of Will's doctors) to be very safe, especially compared to IV tobramycin. (I'm not a doctor -- I barely passed organic chemistry in college -- so this is just how I understand it and isn't any kind of medical advice to rely on.)
So Will is taking TOBI and struggling in various other ways, and we're trying to figure out how to take care of this brand new baby, and it's just chaos and one day Will says -- my balance isn't quite right. And, honestly, I think nothing of it beyond some version of: great, what now. (Even though I knew and had read up on the risks of tobramycin, like I try to read up on the risks of all Will's medications.) And a few days later, his balance really isn't right; and then he finds he can't see anymore when his head is moving and he starts to fall down. So we go to the doctor and (surprise!) he has (1) a huge high concentration of tobramycin in his blood and (2) total vestibular loss. Total. Gone for good. As in, never to recover. Turns out Will's kidney function (which was known to be at best fragile and, basically, bad) had resulted in the TOBI concentrating in an unexpected way. And because it was so unexpected the docs had not been monitoring for it -- and hadn't been monitoring the kidney function well enough either.
This was a huge blow -- Will has always been athletic and the idea that he might not be able to get around was devastating. But, after a little while of feeling really, really bad, he applied himself to the problem, worked slowly to perceive, process and build new physical feedback loops to help his brain process different information about balance in different ways, and now reports that he basically feels no different than before and can do anything he wants. He still has to be a little careful and will occasionally get some version of turned around and lose his balance, but he can walk unaided, ride a bike, drive, rollerblade, row and carry Liam.
The moral of the story for us was that medications taken before transplant won't always work the same way after transplant and kidney function is something to pay close attention to on its face and because of the way it may affect concentrations of medications in the system.
Saturday, July 26, 2008
I can toss and hold my foot at the same time. (Note the influence of Wyeth in this photo, well, except for the forward-facing foot holding, and the tennis ball. . ..)
Daddy -- time to go home.
Daddy! We're having blueberry pancakes for breakfast!
Wait. . . do I like blueberry pancakes?
I think I do like blueberry pancakes! (Just like his Daddy.)
I really, really like them!
Friday, July 25, 2008
During his chemotherapy for Hodgkin's lymphoma in 2006 Will really suffered from blood reducing side effects. Even being treated with special medications to promote production of white blood cells, he had neutropenia requiring hospitalization after virtually every treatment. Even with treatment with more special medications to promote production of red blood cells, his hematocrit took a dive each month. It got to be that we were regulars at the hospital. I could virtually plan my work commitments around knowing that he would be in the hospital for about 5 days starting about 2 weeks after each chemotherapy treatment. (Not to make light of it -- these are very serious things and cancer patients die of infections contracted while they are neutropenic. The one month we didn't go to the hospital resulted in the toughest talk I've ever received from any health-care professional ever, from Will's cancer doc. It went like this: "People die, no fooling. You have to go to the hospital. He has to have strong antibiotics and anti-fungals, he has to be monitored, this would be a stupid thing to die from.")
Ever since then, Will's had odd incursions of bad blood work for no apparent reason. So, time to watch it again and consult with the doctors next week. Hopefully someone will come up with some (relatively benign) explanation for why this is happening. Could be the transplant drugs (although he has been on higher doses before without this happening); could be the transplant drugs interacting in a weird way with something he ate, something in the air, something, whatever. Could be a side effect of treatment with Rituximab, which has been observed to result in delayed neutropenia in some people, from his first PTLD (see, e.g., which I picked because you can get the full text for free and it has many references if you want to do more research).
Could be, anything. Likely we'll never know, it just will be something else to monitor more closely for a while and worry about a little more. And, we'll be extra careful about infection control, since fewer than normal white blood cells means even less ability to fight infection. And, feed Will all the dark leafy greens and red meat he'll eat to promote red blood cell production. And, stay tuned for the results of the consultations with the docs on Monday.
The photo is again from Wikipedia, a Human blood smear. A is some erythocytes; B is a neutrophil; C is an esinophil; and D is a lyomphcyte. Makes perfect sense now -- doesn't it!
I wish I knew what to ask people to do to "fix" the insurance problem in this country. I have been listening to some NPR stories comparing US insurance approaches with those in other countries and I recommend them as enlightening and thoughtful, but I don't really know what action every-day people can take to cause change to happen. All the normal stuff -- write your elected officials, consider this issue when you vote, get involved locally. Mostly, stay healthy if you can.
Wednesday, July 23, 2008
It reiterates for me how quickly one can go from feeling like things are on an even keel to complete chaos. We all know intellectually that any one of us could face the end at any moment, but if you're a person with health conditions that can turn very serious very quickly you experience the reality that your life is temporary most every day. You don't make assumptions about the future like most people do. We don't particularly focus on this in our family, but we don't ignore it either -- it's something to be respectful of. We know that even without any more cancer ever, Will's lung transplant won't last forever. Sometimes it makes us really, really sad to know this, and sometimes we can deal with it in a more matter-of-fact way, and occasionally, especially when Will is feeling well, we don't think about it for a few days or weeks at at time. We hope Will's transplant lasts a long, long time, and it may; it also challenges us to be mindfully grateful every day.
Monday, July 21, 2008
I've been having airplane woes lately -- late flights, delayed flights, you know how it goes. Also more frightening stuff. One small plane hit a bird a few months ago and had to return home and land (I missed that meeting). A big plan I was on last month had to do a "go around" on landing (which means some kind of really steep take off just when you thought you were going to---finally---be on the ground) because there was already a plane on the runway it was meant to land on. Last nights' little plane took the strangest route I've ever seen to this place (I'm in Eastern Washington) and then went over and all around the little airport and then turned and turned and finally went in for a bumpy landing. (Maybe they had to go to the other side because of wind, but it didn't seem that windy.)
Saturday, July 19, 2008
You can make this up 2 hours or so ahead of time, maybe more (although I haven't tried that). Keep it cold if it is going to sit around too long, serve at room temperature. We love this because it really tastes good and it's pretty much all cooked -- Will isn't supposed to eat too many uncooked vegetables because of the anti-rejection, immune suppression medication he takes. I got this recipe from Bon Appetite magazine, I think the May or June issue from this year; I think it's the first recipe from them I've really liked in a long time.
Friday, July 18, 2008
Thursday, July 17, 2008
I'm so proud of Will today. Even though he was up half the night coughing and clearly felt crummy this morning, once he got up he got going, and got out of the house, and went to the park, and stopped by my work to say hi, and played with Liam this evening, and, in general, didn't sink into the depths of despair on account of feeling sick. It's such a hard and complicated thing this disease. A transplant is an incredible gift; and it brings a new set of challenges.
So, check it out: http://cfhusband.blogspot.com/
Will is still feeling crummy and is more and more congested, so he may be headed back to the hospital for more IV antibiotics in the weeks to come. Or, back to the colistin (which he hates). Or something. We are hoping he starts to feel better soon. Hoping, hoping, hoping.
Friday, July 11, 2008
PS - I took the pseudomonas photo from the wikipedia site, which says it is P. aeruginosa colonies on an agar plate.
Tuesday, July 8, 2008
Note Will's big water bottle. The lung transplant saved his life but it didn't cure his CF. (There's no cure -- yet!) So, he loses a lot of electrolytes when he sweats and he sweats more than most so he has to drink lots of water. (It's also important to help protect his kidneys from the damage that the immune suppression drugs want to cause them, not to mention the damage already done by chemotherapy drugs and all that CT contrast.) Lately he's been adding an electrolyte replacement mix to the water, something made for hikers, called Vitalyte (used to be called Gookinaid). He likes it -- says it's just slightly sweet and slightly salty, enough to make it better than plain water but not enough to be annoying or make you thirsty.
The McClellan house had fallen on some hard times (which was how we could afford it!) and needed quite a bit of work. So far we have:
- Put on a new roof on the house and garage
- Put up thin drywall over all the old cracked lath and plaster
- Painted everything except the kitchen and upstairs bathroom
- Insulated almost everything
- Installed a very fancy air filter to catch any old mold or lead tainted dust
Our parents have done a lot of other work, too -- rain barrels so water drains away from the house and into garden areas, wiring and lighting, and lots of other things. And Will has been fixing up the garage on his own schedule -- that is, intermittently and at weird hours -- so it's a useful workshop for building and fixing things.
Friday, July 4, 2008
PS - the hall and entry color is a Benjamin Moore paint called "baby fern." It is easily my favorite color in the entire house; Liam's too.