Saturday, August 30, 2008
Thursday, August 28, 2008
PS - Yes, that is part of a chimney in our bathroom. For some reason, it is not enclosed in that room only. The whole chimney is slated to come down to give us much needed room (and less mess) in the bathroom and kitchen --- the house doesn't have a working fireplace any more and the top was already taken down because, among other reasons, it was cracked from the 2002 or whenever it was big earthquake that happened around here.
Tuesday, August 26, 2008
Monday, August 25, 2008
Sunday, August 24, 2008
Friday, August 22, 2008
Thursday, August 21, 2008
Tuesday, August 19, 2008
Monday, August 18, 2008
Sunday, August 17, 2008
Saturday, August 16, 2008
Finally, get really tired and explain in no uncertain terms that it is too hot, too late, time for bath and time for bed. The end. I hope you all experience some joy this weekend.
Here's how I choose to reflect on it: the reason the story was compelling, I think, is that CF is a real disease and it's fatal. There is no cure. People with CF will die from it, and they will die prematurely. A transplant is not a cure -- it buys time. It is a very, very difficult operation with a range of outcomes (from death to 8-10-? years of additional life). If you get a transplant, you still will die from your CF (or from transplant-related complications) and you will die prematurely. Yes, the story apparently was exaggerated -- but this doesn't change the fact that REAL PEOPLE have CF and they will go through treatments like those described (if they are lucky enough to have good health care) and eventually unless they are taken by some other event, most will get sick, and sicker, and die. This will happen until there is a cure.
If you know and love someone with CF, you have faced this and you have sat in hospital rooms listening to them breath and praying for help, relief, anything. If you know someone with a transplant your joy in this life-saving gift is colored by helping them through what can be a very difficult recovery (it is an incredibly painful operation) and post-transplant complications. I have sat at Will's hospital bed through more than one night counting his breaths per minute -- hoping that the doctors have figured out the right mix of pain medication and antibiotics, calling the nurse when the breathing rate drops below 15 or so, and watching them stage the intubation equipment. I have been told, more than once, to call the family "this is an acute process" (which is hospital code for: your loved one is at real risk of dying, tonight).
FOP had around 275,000 or 300,000 hits. Let's say that is something like 20,000 unique visitors (or more). I respectfully suggest that each of those people take some of their energy about this issue and send $5 to the CF Foundation. If 20,000 people send $5 each, we raise $100,000. That's a lot of money that can be used to search for effective treatments and a cure for all the REAL Ginas/Pepes and Pauls.
I do collaborative process work for a living. In my field, we tell clients to "keep the main thing the main thing." So, let's all focus on the main thing here: this is a real disease, it's heartbreaking and it's fatal. If you're touched by it, if you were touched by Gina/Pepe/Paul's (fake) blog and feel hurt or angry or betrayed or annoyed: turn it to the good. Work for a cure. Rather than visit the various de-bunking sites and stress about this, take that that time and energy and dig through your couch cushions and the pockets of your winter coat and scrape together $5 to give to CFF. Then, go to the CFF donation page and make a $5 donation in honor of all the real Pepes out there. I did.
If you're interested: in the "type of donation" box check: "in honor/memoriam of." When you are prompted to enter the name of the person you are honoring and the name of the family to notify, I typed "pepe" in all 4 fields and it worked fine. Thank you.
Friday, August 15, 2008
Monday, August 11, 2008
Sunday, August 10, 2008
Saturday, August 9, 2008
Friday, August 8, 2008
- About 30,000 people in the US have CF. It is the most common fatal genetic disorder.
- About 10 MILLION people are carriers of the CF gene. Two carriers = a 25% chance that the baby will have CF. It's a simple blood test to find out if you're a carrier. I had one.
- The average life expectancy for someone with CF is increasing as babies are diagnosed earlier because of mandatory screening in many states, access to medical care expands and new treatments are developed; but it is still only about 37 years. Many die sooner. Some live longer.
- In 2007, about 1,470 people in the US received a lung transplant. About 275 people died waiting for a transplant. At the end of 2007, 2,236 people were still waiting. About 15% of those people were listed because of end-stage CF. About 55% of people who receive transplants survive 5 years or more. (More transplant statistics here.)
We feel blessed and lucky to be celebrating this birthday -- that's for sure. This also is the time of year that I write the family of Will's donor. Because of the mandatory separation between organ donors and recipients, we don't know who they are or if they ever get my letters, but we are profoundly grateful to them and I include them in my intentions every day. I have no idea how we're going to celebrate Will's birthday, but hope to come up with something good.