Tonight is the night that Julia, my ballet teacher, says we're moving to more center work, and less barre, since we're progressing.
Thoughts:
1) I am happy we are progressing. Go us!
2) Terrified at the thought of falling on my butt (even though this has never, actually, happened in class. Usually I just fall out of the step or position).
I'll let you know.
Monday, March 31, 2008
Sunday, March 30, 2008
Quick updates
OK so I thought I had the computer glitch fixed, and then when I went to write the massive book post, not so much!
So here are some quick notes:
Books I've read lately (with star ratings):
--Anita Diamant, The Red Tent: ****
--Jacquelyn Mitchard, The Breakdown Lane: ****
--Tracy Cheavlier, Burning Bright: ***
Reading now:
--Portrait of a Lady
--Notre-Dame de Paris
Watching:
--Michael Clayton: ****
--Enchanted! Whoohoo! ****
--The Tudors: Season 1: Awesome possum--**** so far. OK, yes, there are mucho historical liberties, but it is so much fun to watch, with excellent acting.
--Disney: Snow White, The Hunchback of Notre Dame
Jane stuff: Sense and Sensibility starts tonight on PBS--USA Today gave it four stars. Go watch it!
Easter was wonderful--great music, great time with family. Pics up soon, if the computer cooperates!
Today I sang at a LOOP Donor Family Recognition event. It was the first time I had ever sung and accompanied myself (via piano) so I was a little nervous. I sang Sarah McLachlan's "I Will Remember You", which went over well, and, Thank God, it was a simple arrangement. Again, if I get pics, I'll put them up (obviously I didn't take them when I was singing!)
Oh, and just a minor thing--Tricia may have lungs! Ha ha! YAY!
So here are some quick notes:
Books I've read lately (with star ratings):
--Anita Diamant, The Red Tent: ****
--Jacquelyn Mitchard, The Breakdown Lane: ****
--Tracy Cheavlier, Burning Bright: ***
Reading now:
--Portrait of a Lady
--Notre-Dame de Paris
Watching:
--Michael Clayton: ****
--Enchanted! Whoohoo! ****
--The Tudors: Season 1: Awesome possum--**** so far. OK, yes, there are mucho historical liberties, but it is so much fun to watch, with excellent acting.
--Disney: Snow White, The Hunchback of Notre Dame
Jane stuff: Sense and Sensibility starts tonight on PBS--USA Today gave it four stars. Go watch it!
Easter was wonderful--great music, great time with family. Pics up soon, if the computer cooperates!
Today I sang at a LOOP Donor Family Recognition event. It was the first time I had ever sung and accompanied myself (via piano) so I was a little nervous. I sang Sarah McLachlan's "I Will Remember You", which went over well, and, Thank God, it was a simple arrangement. Again, if I get pics, I'll put them up (obviously I didn't take them when I was singing!)
Oh, and just a minor thing--Tricia may have lungs! Ha ha! YAY!
Saturday, March 29, 2008
Upcoming...
In the words of Lizzy, there is "So much to acquaint you with!"
New books, new movies....news in general. Whew.
And it's coming. I promise. Now that my computer is back and working, we'll have new things up very, very soon!
New books, new movies....news in general. Whew.
And it's coming. I promise. Now that my computer is back and working, we'll have new things up very, very soon!
Thursday, March 27, 2008
How long is that list?
From today's Columbus Dispatch:
More than 98,000 names are on the list of people in the United States waiting for an organ transplant. But according to a recent Washington Post story, a third of those are inactive: They are ineligible to receive an organ.
Critics say the list is deceptive and makes the problem seem worse than it is. They have a point. The numbers are used by policymakers who decide donation rules and ways to increase donations, by potential donors to decide whether to donate and by potential recipients trying to gauge their chances of getting a transplant.
Providing an accurate list hardly would change the fact that the need for organ donations is huge. Subtracting the inactive patients leaves about 65,000 people on the list. And last year, nearly 7,000 Americans died waiting for a transplant. Obviously, the need is urgent.
The United Network for Organ Sharing, which runs the transplant system, says many of the inactive patients have encountered complications that seem likely to be ironed out, and they might be restored to eligibility.
Still, keeping inactive names on a list that gets so much publicity could cause people to question the integrity of the system. If they're fudging this, what else are they fudging?
The people who run the system need to remember that honesty is the best policy, along with accuracy and accountability.
From the WaPo:
A Survivor of the Waiting List
Wednesday, March 26, 2008; Page A18
The most important point in the March 22 front-page story "A Third of Patients on Transplant List Are Not Eligible" was this statement by Robert Higgins, president-elect of the United Network of Organ Sharing: "Whether it's 75,000 or 100,000, there are still far more people who need transplants than can get them. None of this changes the fact that there is a significant number of people who die waiting."
It nearly happened to me. On Nov. 27, 1990, I was placed on the waiting list for a heart transplant at George Washington University Medical Center. After a few months, my surgeon told my wife that "even if a heart became available today, he is too sick now for the operation." Fortunately, my health improved, and I was able to withstand the operation on March 31, 1991.
Readers of the article should understand that organ transplantation works. I know. I have had my transplanted heart for 17 years.
DAVID HOLLAR
So, some of my notes:
--I was "inactive" for a weekend once--when I went away to visit my grandparents in Pittsburgh for Memorial Day. It was my grandfather's 80th birthday, and I knew that it would probably be the last time I saw them before I had surgery. Even then, I knew things weren't going well for me. So, in order to enjoy the weekend, the clinic moved me to "inactive." That changed the day I got back.
--This seems to be a problem with mostly kidneys, although I know it can happen with other organs, too. Sometimes you're listed because, like me, you might be OK now, but you can get very sick, very fast. When I was in college I went from dancing with my fiance at a semi-formal to being in the PICU, barely alive, in about four days. My doctors were always concerned that that could happen again, and if it did, they wanted me to be in the position to receive a transplant.
I don't think this should give people cause to worry, since, like the Dispatch editorial says, the list is still huge. 19 People die every day waiting for organs they don't get. The need is still tremendous.
More than 98,000 names are on the list of people in the United States waiting for an organ transplant. But according to a recent Washington Post story, a third of those are inactive: They are ineligible to receive an organ.
Critics say the list is deceptive and makes the problem seem worse than it is. They have a point. The numbers are used by policymakers who decide donation rules and ways to increase donations, by potential donors to decide whether to donate and by potential recipients trying to gauge their chances of getting a transplant.
Providing an accurate list hardly would change the fact that the need for organ donations is huge. Subtracting the inactive patients leaves about 65,000 people on the list. And last year, nearly 7,000 Americans died waiting for a transplant. Obviously, the need is urgent.
The United Network for Organ Sharing, which runs the transplant system, says many of the inactive patients have encountered complications that seem likely to be ironed out, and they might be restored to eligibility.
Still, keeping inactive names on a list that gets so much publicity could cause people to question the integrity of the system. If they're fudging this, what else are they fudging?
The people who run the system need to remember that honesty is the best policy, along with accuracy and accountability.
From the WaPo:
A Survivor of the Waiting List
Wednesday, March 26, 2008; Page A18
The most important point in the March 22 front-page story "A Third of Patients on Transplant List Are Not Eligible" was this statement by Robert Higgins, president-elect of the United Network of Organ Sharing: "Whether it's 75,000 or 100,000, there are still far more people who need transplants than can get them. None of this changes the fact that there is a significant number of people who die waiting."
It nearly happened to me. On Nov. 27, 1990, I was placed on the waiting list for a heart transplant at George Washington University Medical Center. After a few months, my surgeon told my wife that "even if a heart became available today, he is too sick now for the operation." Fortunately, my health improved, and I was able to withstand the operation on March 31, 1991.
Readers of the article should understand that organ transplantation works. I know. I have had my transplanted heart for 17 years.
DAVID HOLLAR
So, some of my notes:
--I was "inactive" for a weekend once--when I went away to visit my grandparents in Pittsburgh for Memorial Day. It was my grandfather's 80th birthday, and I knew that it would probably be the last time I saw them before I had surgery. Even then, I knew things weren't going well for me. So, in order to enjoy the weekend, the clinic moved me to "inactive." That changed the day I got back.
--This seems to be a problem with mostly kidneys, although I know it can happen with other organs, too. Sometimes you're listed because, like me, you might be OK now, but you can get very sick, very fast. When I was in college I went from dancing with my fiance at a semi-formal to being in the PICU, barely alive, in about four days. My doctors were always concerned that that could happen again, and if it did, they wanted me to be in the position to receive a transplant.
I don't think this should give people cause to worry, since, like the Dispatch editorial says, the list is still huge. 19 People die every day waiting for organs they don't get. The need is still tremendous.
Monday, March 24, 2008
Interesting article
My comments in bold
When a baby is destined to die (what baby isn't?)
Perinatal hospices support families with a terminal prenatal diagnosis
By Linda Dahlstrom
MSNBC.com Health editor
MSNBC
updated 8:24 a.m. ET, Mon., March. 24, 2008
Jeanne Deibert knew as soon as she saw the ultrasound.
It didn’t matter that the doctor told her that what looked on the screen like pockets in her son’s brain would likely disappear as he got closer to birth. That things were probably fine. That she shouldn’t worry too much about her baby.
She was his mother. And she felt certain that something was wrong.
As her pregnancy progressed throughout the winter of 2005, other tests raised more red flags until finally the phone rang one afternoon as she stood in the yard of her Seattle home. On the other end was a geneticist, confirming the results of her amniocentesis: the baby had Trisomy 18.
The chromosomal abnormality, which causes heart, kidney and severe mental disabilities, is usually fatal. It occurs in about 1 in 6,000 live births, but many babies who have it die before they are born and those who live often only survive a few days. Less than 10 percent live one year or more.
As Jeanne and her husband, Steve, both Catholics, talked with doctors, they were always clear that they were going to continue the pregnancy. It was against their faith to do otherwise. And they were just as deliberate in planning to parent their son, who they named Robbie, the best way they could, for as long as they could.
As the number of pregnant women being routinely screened has risen, so have dire diagnoses before birth. Only 15 years ago, prenatal screenings could detect less than a dozen conditions, while now it's possible to test for hundreds, ranging from mild forms of hearing loss to deadly Duchenne Muscular Dystrophy.
But the paradox of modern medicine is that knowing doesn’t always mean the outcome will be better. Sometimes you can just see death coming from a long way off.
“The ability to diagnose these problems has absolutely raced ahead of the ability to care for these families,” says Amy Kuebelbeck, whose book “Waiting with Gabriel” chronicles the life and death of her son, who was diagnosed prenatally with a deadly heart defect in 1999.
Two choices, both heartbreaking
In response to the growing number of families struggling with wrenching choices, about 55 perinatal hospice programs have sprung up around the United States in the last decade, says Kuebelbeck, who tracks them on her Web site www.perinatalhospice.org. The programs are designed to provide medical and emotional support for families with a terminal prenatal diagnosis who decide to continue the pregnancy.
“Before a baby would pass away and the family may not know what’s going on. Now potentially someone could have an abnormal screening and diagnosis at 12 weeks and have this whole pregnancy stretch ahead,” says Cheri Shoonveld, a genetic counselor for Fairview Health Services in Minnesota and a spokesperson for the National Society of Genetic Counselors. “Families are having to make a lot more decisions and have a lot more time to think about the impact.”
Studies don't specifically track how many families in the United States choose to continue the pregnancy after receiving a terminal prenatal diagnosis, but in Shoonveld's experience only between 10 percent and 20 percent of families go on with the pregnancy after hearing the devastating news.
However, a small British study in 2007 found that about 40 percent of families with a terminal prenatal diagnosis decided to continue the pregnancy when perinatal hospice was offered.
Both options — to terminate or continue the pregnancy — are heartbreaking.
“It’s the worst news that anyone could get — that your child is going to die,” says Schoonveld. “These horrible feelings aren’t going to go away with a termination. But the flip side is that they’re not going to go away after a baby is born either. ... For many families it's their first real parenting decision.”
Many have family and friends who are mystified as to why a couple would continue a pregnancy knowing their child will die. Loved ones often fear that by continuing on, the parents are simply delaying their grief or torturing themselves. What will they say to strangers who casually ask if the nursery is ready? And what if bringing the baby into this world causes the child suffering? (Um, ALL Children suffer. Every person suffers. This is not unique.)
But for some, the pregnancy feels precious because it may be the only time they’ll get to be with that child, says Schoonveld. “I think most people who have continued want to experience as much time with the baby as possible and want to hopefully meet the baby.”
Other families may have religious reasons that guide their choice. Sometimes parents may hold out a hope that somehow the terminal diagnosis was wrong. And others just don’t want to be the one who decides when their baby dies.
“Don’t assume we’re Luddites or religious fanatics,” Kuebelbeck says. “Don’t assume we’re saints. We’re just parents doing the best we can.”
Meeting Robbie
As Jeanne’s pregnancy continued, she and Steve created a specialized birth plan. It had Robbie’s name at the top and the funeral home’s phone number at the bottom. In the middle they detailed three scenarios: what to do if Robbie was born breathing, what to do if he was not breathing and what to do if his heart wasn’t working. No extreme measures, they decided. And in each scenario, they wanted him in their arms as soon as possible.
“Robbie’s life will be lived with love and honor,” the birth plan stated. (I love that.)
The Deiberts worked with Stepping Stones Pediatric Program to help fulfill that goal. The Seattle perinatal hospice supports families during pregnancy and can help make it possible to bring the baby home after birth if that's what the parents want, says Maureen Horgan, a social worker and the program's coordinator.
When the child dies, staff can help parents make their memories tangible by cutting a lock of their baby's hair or making hand impressions that parents can run their own fingers over during all the years to come. Horgan also knows the kind of practical, crucial details you never want to have to learn — such as how bathing in warm water can help stave off rigor mortis, buying precious time for parents who want to hold their child’s body.
Robbie was barely breathing when he was born on May 18, 2005 at Seattle’s Northwest Hospital. Doctors worked on him for minutes that seemed to stretch on into forever before finally deciding to give him to his parents to hold as he died.
Jeanne, then 40, exhausted from a long labor, drank in the feel of her son in her arms, memorizing every detail. She took in his tiny hands, wide-set eyes and his perfectly shaped ears that she knew probably couldn’t hear.
Then Steve, 43, cradled him and started introducing his youngest son to the crowd of friends and family who had gathered in their hospital room.
“It was clear I was taking him around to say hello and goodbye,” he remembers.
Nearly a half hour after his birth, when Robbie’s breathing was still imperceptible, Steve bent to show his son to Jeanne’s 92-year-old great aunt Veva Conley and she impulsively reached out to warm Robbie’s foot, turned purple from lack of oxygen. In that instant, everything changed.
Robbie, presumably startled, took a deep breath. And another. And another. Soon his breathing was normal and his color started to improve. The next day, Stepping Stones helped them arrange to take him home to their light-filled house to live with his 2-year-old big brother, Stevie, for as long as his body would last.
“My big hope was that his life, however long it was going to be, would be full and not painful,” says Steve. “I would have gladly accepted a miracle, but I didn’t have hopes for him to go to college. We thought, ‘What’s the most we can do for him?’”
‘Things could have been done differently’
The precious hours the Deiberts spent with Robbie in their arms immediately after his birth would have been unheard of in most hospitals only a few decades ago. Doctors and nurses often wouldn’t let parents see their child if they knew the baby was going to die or was stillborn, believing it would be less searing for parents to let go if they’d never said hello.
In 1982, Annette Klein’s daughter was born dead. The staff allowed her to hold Courtney for a few minutes, unusual for the time, but then a doctor brusquely told her, “Well, this has got to end sometime. It’s going to be hard. We may as well just get it over with now.”
But even that brief time was everything. “When I saw her I was filled with this immense mother’s love. … And holding her after her death meant for me that that denial was gone.”
As a nurse herself, she thought about all the other families who didn’t get even the few precious moments she’d had — and wondered what it would have been like if she’d had more time with her daughter.
“I look back and think of all the things that could have been done differently. That was really the impetus,” she says.
Today, Klein, a nurse who specializes in parent education and support at the Birth Center at United Hospital in Minnesota, estimates she’s worked with about 200 families with a terminal prenatal diagnosis, providing one-on-one birthing classes so grieving parents don’t have to sit surrounded by giddy mothers- and fathers-to be. She also offers them their own private tours of the birthing wing and encourages them to start parenting their child in utero since that might be the only time they have with their baby.
“I tell them, ‘You are already a mother and have an amazing opportunity to love them, parent them, sing them their little lullabies,’” she says.
‘Born perfect, except for his heart’
Not all medical caregivers are supportive. Schoonveld, the genetic counselor, has a friend who was told by her doctor that the pregnancy would be so stressful for her that she should terminate. When she decided to continue her pregnancy, “the response she got was, well you might as well not even show up for your appointments because this baby isn’t going to live.” Maureen Horgan, of Stepping Stones, has talked with women whose doctors didn’t see the point in weighing them at their prenatal checkups.
Kuebelbeck hopes to help change that kind of reaction. She is often asked to speak at medical conferences around the United States about perinatal hospice, encouraging doctors and geneticists to support those families who do choose to continue and sharing the story of her son, Gabriel.
Three and a half months before he was born, Kuebelbeck found out that Gabriel had an incurable heart condition and would die soon after he was born. She and her husband decided to fill their pregnancy with things they once hoped to introduce Gabriel to in the years following his birth.
“People assumed the time of waiting was torture,” she says. “But it wasn’t. We had a lot of beauty in it. We had to change our thinking: We weren’t going to get to keep him, but this was our time with him. We think of it as our summer with Gabriel. We took him fishing. We had a family portrait taken. We took him to a baseball game. We picked out his casket. All of those were ways of parenting Gabriel.”
He was born on Aug. 8, 1999 and lived for two and a half hours. During his short life, his sisters and extended family met him and held him and Kuebelbeck’s husband baptized Gabriel himself when it was clear the priest wouldn’t arrive before he died. He was beautiful, Kuebelbeck remembers. “Born perfect, except for his heart,” read the announcement she sent out about Gabriel’s birth and death.
Some have wondered why she’d put herself through a pregnancy and birth when she knew she’d go home with empty arms. “It isn’t all for nothing,” she says. “You can still love that baby, protect that baby and give that baby a peaceful goodbye. That’s not nothing.”
Living life fast
Like Kuebelbeck, the Deiberts wanted to make whatever time Robbie had as rich and loving as possible.
In the days that followed after they went home from the hospital, Steve and Jeanne took him to the beach, to church and to visit friends. When he turned 1 week old, they celebrated with a brownie and candle, knowing he wouldn’t be alive to see his first birthday.
“We had the sense we needed to live life fast,” says Jeanne.
When the family wanted to take Robbie on a car trip across the state to visit relatives, Stepping Stones helped put them in touch with a hospice in another city in case Robbie died on the way.
Jeanne wasn’t sure exactly how much Robbie was aware of. A nurse told her he was probably deaf. She doesn't know how much he could see and wonders about his brain function. But her goals for his life were simple.
“I wanted people to experience him,” she says. “And I think he was experiencing being held.”
Jeanne and Steve traded off caring for Robbie in three-hour shifts around the clock. Both of them were terrified each time he dislodged the feeding tube from his nose; if they reinserted it incorrectly it could go into his lungs, which would kill him.
A nurse from Stepping Stones came over nearly every day to see the family and check on Robbie.
“They’d say, ‘Oh, he looks beautiful. You’re doing great. He seems happy.’ It was so reassuring that we were doing the right thing. It helped us to relax because every day we were wondering ‘Is this the day?’ ‘Is this the moment?’ And we knew that they were going to come (when he died). We weren’t going to be alone,” Jeanne says.
At night, Jeanne slept with Robbie cuddled against her chest. She’d heard about other parents of terminally ill children who woke in the morning to find their child dead in the bassinet and she wanted to make sure that didn’t happen. She needed to know the moment her child died, to be with him and see it through.
‘Hold on tight … and let go’
At about 8:15 a.m. on June 16, 2005, Jeanne was in the kitchen with her mother making breakfast. Nestled into a carrier against her chest, Robbie’s breathing began to change. He took a breath … and then a long pause. Then he took another, followed by stillness. Then at last another breath.
Jeanne ran into the bedroom to wake Steve. As she started to describe his breathing pattern, they realized Robbie wasn’t breathing. Jeanne laid him down on the bed beside Steve. “No, no, not yet,” she pleaded over and over as she rubbed Robbie’s cheeks, hoping to prompt him to inhale.
He never took another breath. He had lived for 29 days.
“I think he just turned off,” remembers Steve.
The Deiberts called Stepping Stones and a nurse came over to help prepare Robbie’s body and notify the funeral home.
“It was one of those things you don’t learn in normal parenting manuals — who do you call when your baby has died?” says Jeanne.
Soon friends, family and their priest were filling their home, holding Robbie’s body and loving him, just as they had the day he was born.
“The whole experience was very serene,” she says. “I don’t think we put him down once during that time.”
That morning as Jeanne and Steve sat on the sofa cradling Robbie’s body, their son Stevie walked over and placed his beloved stuffed dog gently on Robbie’s chest, a big brother’s last gift.
The night before Robbie’s funeral, Jeanne hand-lined the small wooden casket a friend had made. While she worked, she envisioned parallel worlds — the real one where Robbie died, but also a glorious imagined one of what it would be like if he’d lived.
As she carved padding from the mattress that had once lined Robbie’s crib and covered it with soft fabric for his coffin, she pretended she was making a Halloween costume for him. While deciding the details of his service, she imagined what it would have been like to plan instead for his wedding years down the road.
Today, the Deiberts first son, Stevie, is now almost 5 and loves trains and puzzles. Sixteen months ago, they had another baby, a little girl named Adele. Jeanne stays home with her kids, and the family still lives in the house where Robbie spent his life. His photos adorn table tops along with pictures of his brother and sister. Jeanne is tenderly keeping mementos from his life, like a hand-made blanket, Robbie's birth announcement and the outfit he wore home from the hospital, so Stevie and Adele can have them when they're older. Robbie’s footprints, forever tiny, hang on the wall.
"Robbie taught us to love what we have, when we have it, because time is measured," Steve said in the eulogy he delivered at his son's funeral. "Robbie has taught us to hold on tight — and to let go."
© 2008 MSNBC Interactive
URL: http://www.msnbc.msn.com/id/23682263/
Sunday, March 23, 2008
Saturday, March 15, 2008
Happy happy!
My cousin Julie gave birth to twin girls yesterday, Lucy and Natasha. I believe they are all doing well.
I can't wait to see them! :)
I can't wait to see them! :)
Forbidden love
This piece from the NY Times beautifully expresses the loneliness CF patients feel, and how some of us deal with it--by breaking the rules.
Friday, March 14, 2008
Thursday, March 13, 2008
Beads
I was at the "resort" today, and noticed a pamphlet for a new program Children's is starting, called "Stinger's Bravery Beads", which is named after the Blue Jackets' mascot and is funded through the Jacket's Foundation, which helps fight pediatric cancer.
As I looked at it, I though, "wow, this is great! I would love this!" Then I noticed something--it's for cancer kids only.
Why is that?
I looked at the list of things that you could earn beads for. The list is long, but here's what I've done:
--Birthdays (since diagnosis)
--BM Transplant (I'd replace with lung, but you say tomato)
--Clinic Visit
--Dressing change (let's see...where do we start? PICCS? Ports? The dressings from the burn post-surgery?)
--ER visits (ha! Ha! I'd have half a million)
--Fever
--Holidays (since diagnosis? In hospital? Either way, we'd have this covered)
--Hospital Admission (no comment)
--Line In (PICCS? Peripherals? Port access? Does this count ones that went bad, too?)
--Line Out
--Major Surgery (the transplant, the CI)
--Medical Exam (oh, the thousands upon thousands)
--New Diagnosis
--Off TPN (yup, done that! Several times!)
--OT/PT
--PCA/Morphine (ahhh, the Lovely PCA pump!!)
--Pokes (millions. I kid you not.)
--Scans/Tests (MRI, Bone scans, VQ Scans)
--School (in house)--did that with my first diagnosis
--School re-entry (many, many times)
--Spirituality (a lot! Thanks Fr. Mark!)
--Terrible, Horrible, Very Bad Day! (um, lots)
--TPN
--Transfer to PICU (one, or two, if you count post-tx)
--Transfusion
--Tube insertion (Chest, Catheter)
--Very Good Day (A few of these)
But there's one on the cancer list that you will NEVER see on the CF list:
--End of treatment
Because CF treatment only ends when youdo. There's no remission, no recovery, no "Five years and we think you're cured" status. Sure, I don't do Chest PT anymore. Other things have taken its place. But that doesn't mean that it's over.
I think we deserve some beads.
As I looked at it, I though, "wow, this is great! I would love this!" Then I noticed something--it's for cancer kids only.
Why is that?
I looked at the list of things that you could earn beads for. The list is long, but here's what I've done:
--Birthdays (since diagnosis)
--BM Transplant (I'd replace with lung, but you say tomato)
--Clinic Visit
--Dressing change (let's see...where do we start? PICCS? Ports? The dressings from the burn post-surgery?)
--ER visits (ha! Ha! I'd have half a million)
--Fever
--Holidays (since diagnosis? In hospital? Either way, we'd have this covered)
--Hospital Admission (no comment)
--Line In (PICCS? Peripherals? Port access? Does this count ones that went bad, too?)
--Line Out
--Major Surgery (the transplant, the CI)
--Medical Exam (oh, the thousands upon thousands)
--New Diagnosis
--Off TPN (yup, done that! Several times!)
--OT/PT
--PCA/Morphine (ahhh, the Lovely PCA pump!!)
--Pokes (millions. I kid you not.)
--Scans/Tests (MRI, Bone scans, VQ Scans)
--School (in house)--did that with my first diagnosis
--School re-entry (many, many times)
--Spirituality (a lot! Thanks Fr. Mark!)
--Terrible, Horrible, Very Bad Day! (um, lots)
--TPN
--Transfer to PICU (one, or two, if you count post-tx)
--Transfusion
--Tube insertion (Chest, Catheter)
--Very Good Day (A few of these)
But there's one on the cancer list that you will NEVER see on the CF list:
--End of treatment
Because CF treatment only ends when youdo. There's no remission, no recovery, no "Five years and we think you're cured" status. Sure, I don't do Chest PT anymore. Other things have taken its place. But that doesn't mean that it's over.
I think we deserve some beads.
Labels:
C.I.,
CF,
church,
drugs,
exercise,
general,
health care,
holidays,
hospitals,
IV therapy,
meds,
people,
personal essay,
procedures,
pulm rehab,
rants,
transplant--general,
transplant--post-tx
Tuesday, March 11, 2008
CF genetics 101
I was talking about lung tx and CF with a colleague today, so here is a brief genetic explanation from our discussion
CF is the most common fatal genetic disease in the US, mainly affecting caucasians and certain other ethnic groups. To determine the presence of CF, the following genetic diagram may be helpful.
A= dominant gene a= recessive gene
Most of the time, a dominant gene wins out (obviously) and is seen in the child. Dark hair is a dominant gene, for example.
So, two parents that are Aa and Aa for CF will yield the following chances for each kid:
--AA: Child does not have CF and is NOT a carrier (he has both dominant genes)
--Aa: Child does NOT have CF, but is a CARRIER of CF, meaning that if that person marries another Aa person, they have a 1 in 4 (25%) chance of having a child with CF.
--Aa (same as above)
--aa: Child HAS CF (this would be me).
A family note: recessive genes seem to take the cake in my family. My dad is a dark haired Italian. My mom is a blond German-Irish/Scots. The three of us? See below.
CF is the most common fatal genetic disease in the US, mainly affecting caucasians and certain other ethnic groups. To determine the presence of CF, the following genetic diagram may be helpful.
A= dominant gene a= recessive gene
Most of the time, a dominant gene wins out (obviously) and is seen in the child. Dark hair is a dominant gene, for example.
So, two parents that are Aa and Aa for CF will yield the following chances for each kid:
--AA: Child does not have CF and is NOT a carrier (he has both dominant genes)
--Aa: Child does NOT have CF, but is a CARRIER of CF, meaning that if that person marries another Aa person, they have a 1 in 4 (25%) chance of having a child with CF.
--Aa (same as above)
--aa: Child HAS CF (this would be me).
A family note: recessive genes seem to take the cake in my family. My dad is a dark haired Italian. My mom is a blond German-Irish/Scots. The three of us? See below.
Sunday, March 09, 2008
Blizzard Food: Shrimp with Tomato-Feta compote
This is so easy--it takes less than 10 minutes to prepare, and will remind you of summer. A very good thing to be reminded of when you're sitting in 16" of snow.
Saturday, March 08, 2008
The Activity Report
Cooking:
--Shrimp with Tomato and Feta compote
--Chicken Piccata
--Brioche (mmmmmm)
Reading:
--Portrait of a Lady
--various cookbooks
Watching (oh, what a list):
--Michael Clayton
--The Interpreter
--Mystic River
--Cinderella Man
--The Passion
--Million Dollar Baby
(Yeah, I didn't go for the light movies...ha ha).
I think it might have finally stopped snowing.
--Shrimp with Tomato and Feta compote
--Chicken Piccata
--Brioche (mmmmmm)
Reading:
--Portrait of a Lady
--various cookbooks
Watching (oh, what a list):
--Michael Clayton
--The Interpreter
--Mystic River
--Cinderella Man
--The Passion
--Million Dollar Baby
(Yeah, I didn't go for the light movies...ha ha).
I think it might have finally stopped snowing.
Friday, March 07, 2008
Blizzard Food: Egg Drop Soup and brioche
From Thirty Minute Meals
Stracciatelle: Italian Egg Drop Soup
For every two bowls:
--2 cans (14 oz. each) no-fat, low-sodium chicken broth
--2 eggs
--3 tbsp. grated parmesan cheese
--ground nutmeg (to taste)
--fresh-ground black pepper (to taste--the more pepper, the more heat)
--Handful chopped parsley (I used dried)
Heat broth over medium-high heat. Scramble eggs with cheese, nutmeg and black pepper. As broth comes to a boil, drop broth to a simmer and drizzle the eggs into the pot in a slow stream by scooping eggs into brother with a fork. Drizzle in a circular motion. The result will be rags of eggs in the broth. When the eggs are all incorporated into the broth, add parsley and turn off the heat. Ladle out soup and serve with crusty bread.
(This is also in some Chinese cookbooks, with a few variations, and can be called "egg flower", since the egg pieces seem to "bloom" when they hit the pot.)
The brioche is being made now--for finishing tomorrow.
Stracciatelle: Italian Egg Drop Soup
For every two bowls:
--2 cans (14 oz. each) no-fat, low-sodium chicken broth
--2 eggs
--3 tbsp. grated parmesan cheese
--ground nutmeg (to taste)
--fresh-ground black pepper (to taste--the more pepper, the more heat)
--Handful chopped parsley (I used dried)
Heat broth over medium-high heat. Scramble eggs with cheese, nutmeg and black pepper. As broth comes to a boil, drop broth to a simmer and drizzle the eggs into the pot in a slow stream by scooping eggs into brother with a fork. Drizzle in a circular motion. The result will be rags of eggs in the broth. When the eggs are all incorporated into the broth, add parsley and turn off the heat. Ladle out soup and serve with crusty bread.
(This is also in some Chinese cookbooks, with a few variations, and can be called "egg flower", since the egg pieces seem to "bloom" when they hit the pot.)
The brioche is being made now--for finishing tomorrow.
A blizzard? Really?
Apparently we in Ohio are getting a REAL blizzard. So I figure, if it pans out, I should document it.
Therefore, I will be posting snow pics, snow recipes, snow reads, snow movies...ha ha. Well, OK, basically documenting what happens during a "blizzard."
This may or may not be interesting. But we'll see.
First NOTE: TRAVEL--PLEASE, for the Love of All Things Holy, TURN YOUR LIGHTS ON on the roads! Yes, at 4:00 pm you didn't need light to see your dash. But with blowing snow, other drivers need to see you. Unless you want to be hit.
Therefore, I will be posting snow pics, snow recipes, snow reads, snow movies...ha ha. Well, OK, basically documenting what happens during a "blizzard."
This may or may not be interesting. But we'll see.
First NOTE: TRAVEL--PLEASE, for the Love of All Things Holy, TURN YOUR LIGHTS ON on the roads! Yes, at 4:00 pm you didn't need light to see your dash. But with blowing snow, other drivers need to see you. Unless you want to be hit.
Wednesday, March 05, 2008
Some randoms for your Wednesday
Quick add: vote for me!
Ballet class: Is really going well. My second class was on Monday, and I held my releves longer than two of the other girls in class. Go me! (And they were the thin type, which makes you think--healthy, right? At least my abs are stronger. Ha ha!)
Weather: Monday--61 degrees. All the windows open, my sunroof down for the first time this year! Today? Snow. Grossness. It's about 30 something. Ew.
Books: I just finished Oliver Twist. Descriptions: fantastic. Oliver and his plot: excellent. Fleshing out of secondary characters: good. Subplots: too many. Oliver "disappears for the length of a Bible" in some places. We do not need to hear about the Beadle, Mr. Brownlow and Charlotte, etc., etc. once Oliver is done with them. They took up waaay too much time. And did anyone else think the whole Mr. Monk is Oliver's half-brother thing was sort of--random?
Ballet class: Is really going well. My second class was on Monday, and I held my releves longer than two of the other girls in class. Go me! (And they were the thin type, which makes you think--healthy, right? At least my abs are stronger. Ha ha!)
Weather: Monday--61 degrees. All the windows open, my sunroof down for the first time this year! Today? Snow. Grossness. It's about 30 something. Ew.
Books: I just finished Oliver Twist. Descriptions: fantastic. Oliver and his plot: excellent. Fleshing out of secondary characters: good. Subplots: too many. Oliver "disappears for the length of a Bible" in some places. We do not need to hear about the Beadle, Mr. Brownlow and Charlotte, etc., etc. once Oliver is done with them. They took up waaay too much time. And did anyone else think the whole Mr. Monk is Oliver's half-brother thing was sort of--random?
Tuesday, March 04, 2008
Um...
Adele Stan [Ramesh Ponnuru]
makes the feminist case for Obama. A sample:
The feminist rationale for an Obama vote is really quite simple: My grand-niece. Your daughter, if you have one. All the little girls who are growing up at a rather grim hour in American history.
Our nation is sinking deeper into recession. We are mired in a bloody, intractable conflict in Iraq, and may be losing the war in Afghanistan.Our beloved Constitution has been raped and pillaged. Instability and the specter of war threaten every continent. Climate change is hard upon us.
As Lizzie says, "Thank you for my share of the favor, but I don't particularly like your way of getting [presidents]."
Monday, March 03, 2008
Saturday, March 01, 2008
Wow, thanks guys!
Catholic Poster Girl (my other blog) has been nominated in the Catholic Blog Awards.
Voting starts on Monday...so, um, vote for me. :)
Voting starts on Monday...so, um, vote for me. :)
Meme time!
1) What is the last movie you saw in a theater? Was it good? I am going to see The Other Boleyn Girl tonight, so maybe I should wait on this. BUT the last movie I saw in the theater was Juno, and yes, it was good.
2) What is your favorite tv show? Desperate Housewives
3) What is the last album you bought (or stole from the internet, or burned from a friend) that you loved? Idina Menzel's I Stand.
4) If you were in charge of People Magazine’s Sexiest Person Alive, who would win? Colin Firth. No Questions. :)
5) Who is your favorite artist? (Like art artist) Oh, this is hard. Painting: Monet, Renoir...the Impressionists in general. Singing: Renee Fleming, Josh Groban and most musical theater kids :)
6) What is your favorite musical/opera/play? Musical: Phantom, of course! Opera: La Traviata Play: The Miracle Worker/A Man for All Seasons
7) What do you think is the worst song ever recorded? There are Simply Too Many.
2) What is your favorite tv show? Desperate Housewives
3) What is the last album you bought (or stole from the internet, or burned from a friend) that you loved? Idina Menzel's I Stand.
4) If you were in charge of People Magazine’s Sexiest Person Alive, who would win? Colin Firth. No Questions. :)
5) Who is your favorite artist? (Like art artist) Oh, this is hard. Painting: Monet, Renoir...the Impressionists in general. Singing: Renee Fleming, Josh Groban and most musical theater kids :)
6) What is your favorite musical/opera/play? Musical: Phantom, of course! Opera: La Traviata Play: The Miracle Worker/A Man for All Seasons
7) What do you think is the worst song ever recorded? There are Simply Too Many.
Subscribe to:
Posts (Atom)