Diary entries

From my journals, before tx. Very varied, and I've edited out stuff like what I was reading, watching, and school/friend drama. :)

December 1, 2004

....I'm back in the Resort. The last IV course didn't finish because my veins are just too scarred and tough, so we had to quit the course about a week early. Well, I never really got back to baseline, and I've been coughing more and there's been some blood too. But the real deal-breaker was when I had pancreatitis symptoms on Sunday. We tried to treat them at home, but it was too extreme, pain-wise, so I've been here since Monday. I'm also going to get a port put in before I go home, since all my peripheral and PICC sites have gone to total crap, which is no surprise after 11 years, I guess. So I had my first MRI today (actually, an MRV, to look at my veins), which was a little freaky--I'm not very claustrophobic, but I sure was here. So I'm on the pain drugs and IV antibiotics and phenergan and IV fluids, so I'm really living it up here...

December 2, 2004

Still here in Paradise...port surgery scheduled for tomorrow at 4 p.m. Not much going on here...Branden and Richelle might come visit on Saturday afternoon, whcihc would be nice. Today I also received violets from the choir and a Christmas arrangement from Grandma and Pa.
Still having pains and nauseau...would really like to get this under control...

December 8, 2004
Feast of the Immaculate Conception
Ryan's 7th birthday

Sorry I haven't written...had an IV in my thumb, so really couldn't hold a pen. My hand is still pretty swollen [from the infiltrate] but that's OK.
Got the port on Monday--went OK. It hurts quite a bit thought...I wish that would stoip. I'm still in here, but I talked to [my boss] today and she said all is good at work, so I can relax about that.
Ryan called me tonight, which was great...Since it's a Holy Day of Obligation, Fr. Mark came to give me Communion after dinner, which was nice.

December 12, 2004
Note: this is a really dark entry that I wrote after having a less than wonderful conversation with one of my doctors. So take EVERYTHING with a grain of salt,please. Thank you.

I'm not even sure what to write--I just feel like I shoulde engage in the activity...
I'm 22, and this is my life. Trapped here, always dependent, always under someone's thuumb. I can't do what I want, can't be what I want, can't do anythign I want, because of my life's circumstances and the people who are always saying "no" and denying me opportunity. I don't even know if I WANT a stupid transplant--what good will it do me?--but of course I'll say "yes." Of course it will be done. It doesn't really matte r what I want, or live. I've got 30 mothers who won't let me just be or live or do what I'd like to do. I have a brilliant mind, which is wasted in my work. I have energy and passion that can't really be channeled into anything I care about...
I wish I was free and could do as I pleased...but I"m stuck here, where nothign will change, where I'm held captive to fear and uncertainty...even with the transplant, it's only five more years. I'll never be free, I'll enver be able to do what I want. But I'm the "good" girl, the obedient daughter and patient. I'll always do what they tell me, because I don't have enough courage to go against them.
I'm so tired of people telling me that they do things "because they care." There are times where I wish they cared much, much less. I"m so tired of being smothered by concern.

February 25, 2005
In case you can't guess by the heading, I"m back in my favorite place! Although I must admit it hasn't been too bad...but with joint and chest pain and increase cough, I figured it would only be a matter of time. And I will say, I am enjoying the port much more than I thought, and my arms are gratefully relieved of their IV hosting duties.
I'm on amakacin, two other IV drugs and off Cipro, Ceptax, Tobra (yay!) and minocycline. Huzzah. Mayube now I can keep my head in the game.
Generally feeling OK now trhat we've got the chest pain in order. Wednesday my joints felt like they were on fire--I could hardly walk. Ugh. Like I said to Dr. M tonight, I am ready for some new parts, and once I get my transplant, I am going to rock.

Ferbruary 26, 2005
Still here, still working on the problems. Having chest pain, but at least I'm on IV phernergan now, which is so much better than the pills, I will say. I may actually get some real sleep tonight.

February 28, 2005
Still here...still having pain, still messing with drug combinations. Such is life.

March 1, 2005
Began transplant testing last night with massive blood draws, and by massive I mean about 7 1" tubes!! This has been followed by ANOTHER huge blood draw this morning, as well as 24 hour urine test, whatever that means. I will say, though, that if I didn't have the port, these blood draws wouldn't have happened because my veins are pretty shot, as we know.
We're doing a sat study tonight to chart oxygen levels and we might do more urine tests in the AM, but at least the blood letting's done--Dr. A says that's mostly to find my tissue type for transplant.

March 2, 2005
Going to have some sort of lung scan soon in Nuclear Medicine (egh..) that involves breathing in gas an dhaving IV contrast to see blood flow into the lungs and such. Not quite sure what this entails,b ut it's another transplant thing, and Dr. A says that it's not invasive. I just hope it's not like an MRI...that was not so much fun. Even though MRIs don't hurt, it's quite unnerving to lay inside the tube with your neck and head in some sort of vice-like ocntraption and the inability to see anything except a tiny swuare of wall,b ut seeing anything makes you feel less trapped. Without that little bit of light it would be very tricky. I would equate it to being placed in a coffin or mummysack still alive, yet unable to move. EH! Quite bizarre. So I'm hoping it's not like that, although it's alwasy COLD down there--colder than Radiology in general, which is always about 45 degrees--you could almost keep milk and eggs down there.
And it's so quite, you hardly ever see anyone. You get the feeling you could languish away for hours, down there, waiting for someone to find you and do whatever. But the absolute WORST is floroscopy/intervention, because it's like the Twilight Zone. NO ONE is ever there, the TVs aren't on, the four exam rooms are dark and filled with strange medical equipment and cold steel tables. when you go to get a PICC you go into the Intervention room and lay on a thing, bitter cold plate of steel underneath a huge light and radiology equipment. The nurses put warm blankets on you, but it doesn't really help. Sometimes there's music. It takes about 30-45 minutes of lying cruiciform on the table to find the deep veins (using ultrasound) and then inject the novocain or whatever, then thread and stitch in the catether...it's very hard to relax and hopefully they do it ONCE, right, because it's quite uncomfortable to have people tugging and pulling on delicate underarm skin. Dr. Hogan does a good job, but some are just hacks and don't really care if they hurt you.
PICCS generally aren't uncomfortable, though they did make dressing interesting when it was warmer. After a few weeks they start to hurt, and you REALLY wish you could just scrub your sking as well as you can with thick, foamy bath gel...In the summer, you couldn't swim with it, or wear short sleeves, or anything. And [some people] never really got used to seeing it.
--
Got the scan done. Let me tell you, spending 45 minutes in the dimly-lit bowels of nuclear medicine with your arms over your head is NOT the best way to spend an afternoon. Your arms get quite tired after awhile and those plates get so close! I felt like I was going to be unceremoniously squished...not a nice feeling at all. But overall, not a bad test.

March 3, 2005
Finalyl back...LONG day. Discharged around 2:00, then went to Eastland...then I came home, made up the dinner menu for the next 5 nights and went shopping FOR the menu at 7:30, which took a long while because I'm not used to the new Kroger layout. We've still got to get the bloodwork straightened out for Mondya--I can't BELIEVE how much blood they've needed for this transplant prep so far.

March 7, 2005
Only worked a half day today, which was good, given that the morphine did a number on my concentration and such, and my joints were highly rebellious. But the blood draw went well..while we're on home IVs, I'll be doing 8:30-3:00 hours at work.

March 14, 2007
Entering the last week of home IVs--huzzah! I don't tihnk I can take any more hair neglect. The port is great for many things but hair and body washing are not some of them. Sigh. Oh well. Only two more days!

March 17, 2007
St. Patrick's Day
IV reprieve...huzzah! Clinci went well, although I get the feeling that Drs. A & M want to get me transplanted as quickyl as possible. The whole gravity of the situation is starting to hit me.
Really, really tired...going to bed, so sorry for the short entry.

March 24, 2003
Holy Thursday

IV reprieve but symptom revival...I think that this point it would simply be easier to list the body parts that DON't hurt than to give the litany of complaints. But we're "working on it"...sigh.
Stayed home form work today to give my falling apart body a break...honestly, the sooner the transplant, the better. I am so TIRED of feelign like crap all the time.

March 28, 2005
Easter Monday/ Octave of Easter

....Appointment with Kathy today. Talked about my life within the whole prism of transplant. I'm so nervous about it. I mean, I WANT it, but I'm terrified at the same time. I guess that's normal. Everyone tells me that's normal. I don't know, obviously.

Yay!

From WebMd:

Lung Transplant Survival Improving
More Than 63% Survive for at Least 3 Years, Experts Report
By Miranda Hitti
WebMD Medical NewsReviewed by Brunilda Nazario, MDMarch 15, 2006 - Good news for lung transplant patients. The odds of survival for this risky surgery are getting better.

A report in the American Journal of Respiratory and Critical Care Medicine details the improvement. The report shows that nearly 56% of people who got lung transplants in 1988-1994 survived for at least three years, compared with 63% who got lung transplants from 2000 to 2003.

Data came from the 2005 Official Report of the Registry of the International Society for Heart and Lung Transplantation. The researchers were Marc Estenne, MD, of Erasme University Hospital in Brussels, Belgium, and Robert Kotloff, MD, of the University of Pennsylvania.

Latest Lung Transplant Numbers
The report details findings for 931 bilateral lung transplants (in which both lungs are replaced), 772 single-lung transplants, and 74 heart-lung transplants in 2003.

Though survival has improved, lung transplantation still carries serious risks including infections and rejection of the transplant by the patient's immune system.

Lung transplants are usually done as a last resort after other medical treatments fail for diseases such as emphysema, pulmonary fibrosis, and cystic fibrosis. Afterward, transplant patients must take medicines for life to reduce the chances that their body will reject the transplant.

Expanding the pool of organ donors is a key priority, note Estenne and Kotloff. They also call for new ways to predict and avoid complications from lung transplants.

Long Waiting List
In the U.S. today, there are 3,099 people waiting for lung transplants and 148 awaiting heart-lung transplants. Those figures come from the Organ Procurement and Transplantation Network (OPTN). The United Network for Organ Sharing runs OPTN under contract with the U.S. Department of Health and Human Services.

In 2005, nearly 3,500 people in the U.S. were on lung transplant waiting lists and 1,000 got lung transplants, according to the American Lung Association.

Considering becoming an organ donor? The U.S. Department of Health and Human Services offers this advice:

Indicate your intent to be an organ and tissue donor on your driver's license.
Carry an organ donor card.
Most important, discuss your decision with family members and loved ones. Your family may be asked to sign a consent form in order for your donation to occur.

SOHC 13: from the Corner

Personal anecdote time:

Having just undergone prostate surgery and a somewhat-problematic recovery, I’d like to share a couple of personal reflections about the state of health care reform.

First, it is evident to me that the consumer-driven health care movement is starting to take hold. I’ve never been much of health-care consumer myself – the last time I had surgery was nearly 20 years ago, to stitch together my broken arm after a bizarre newspaper-delivery accident – but I was married to a diabetic with numerous medical complications and spent many years in and out of doctor’s offices and hospital rooms. Things have clearly changed. For the first time, I was actually presented up-front with the price of a procedure, and informed of alternative treatments with different prices and prognoses. Also for the first time, I did not have to explain what a health-savings account was to a medical provider. That’s progress.

Second, I was glad that I lived in the United States and not Canada when, having just come home from the hospital, I read a CBC piece about the severe shortage of urologists in the medical paradise to our north. The waiting time for urology patients in some parts of Canada is now almost a year. For those afflicted with prostate cancer or other serious ailments, such a wait isn’t just an imposition – it’s a prescription for severe pain or worse. In my case, I had my choice of skilled surgeons, a choice informed by word-of-mouth and my personal physician’s advice. And the earliest surgery times available were just a few weeks from the decision date.

In addition, I had no doubt that the urologists in my region (Raleigh-Durham, NC) were up on the latest discoveries and surgical techniques, whereas in single-payer countries the resources devoted to innovation and research are woefully inadequate. They can rely on American ingenuity to some extent, but I prefer to tap my expertise at the source.

Now a complaint: there were still way too many paper forms to fill out and redundant medical questions to answer from multiple docs and nurses. To some extent, I am told, there is a value to redundancy. Patients don’t always remember their histories accurately, or even honestly, so multiple prompts can elicit critical information. But still, we remain a long way from capturing and sharing medical information as well as we do other consumer information. No matter which oil-change location I go to, the mechanics can quickly call up the previous-service record for my car. Let's get on with it.

Go Steelers!

Yes, win over the Browns! Ha!
You know when you keep your starting quarterback in for at least the first half, you've got issues. And it's not the offensive line, or the coordinator.
:-D :-D

The "Fat Man" and his great art

The passing of Pavarotti made me want to put on my La Traviata recording and just glory in his voice. I have yet to do this, but will probably do it today.
His voice, so warm and huge and thrilling, is one of the few "voices" that are instantly recognizable. He was always a joy to listen to. In fact when I go to buy opera recordings I almost always pick the one he's on, just because I know that at least his role will be a fine, wonderful, technically brilliant rendition of whatever the role happens to be.
Singing is one of the things that got a lot better after transplant (well, OK, we're still messing with the CI, but I have hopes for that). Can you imagine basically doubling your lung function? Because that's what happened (I'm at about 61% now, and I was 28% pre-tx. So you do the math). Karen, the transplant coordinator, told me that basically only the center of my lungs (closest to the trachea) were working; the rest was scar tissue. But these new lungs are really happy, and music is so much better. Especially in the realms of Opera--breath support sort of important, there. :)
Now if the ears would just catch up...

Yay!

Choir starts back tonight!! Pizza after "rehearsal" (more of a meeting, the first week). Hooah!

And the CI is really working beautifully. Hopefully it will keep getting better. :)

Daily schedule

Just in case you ever wonder, "so, what's a 2 year post-tx patient's daily schedule like?" I present you mine (this is for a weekday):

6:20: Alarm goes off.
6:30-7:00: shower, dress, hair/make-up
7:00-7:15 (roughly): breakfast (usually cereal and coffee) and meds, which are:
--prograf (anti-rejection, 1 mg)--8:00 AM but I have a one hour window on either side. This gets taken Q12 (aka, every 12 hours)
--vfend, an antibotic that's given prophylactically (meaning to keep scary things from showing up. Most people are more dangerous to me than I could ever be to them.) This is twice a day.
--acyclovir, another prophylactic drug (twice a day)
--If it's MFW, Bactrim Double strength (DS)--my old friend! Also antibiotic.
--Slow Mag tablets, 4 at 200 mg each (the anti-rejection drugs mess with your metabolism levels)
--Prednisone, 10 mg, a steroid (leads to the puffy face...mine's not too bad...the tummy and the occasionally swollen fingers). It was 15 for awhile but I begged (not too hard) to have it bumped down. This MUST be taken with food or milk (like the bactrim) because 1) it tastes nasty and 2) if you don't, you get lovely stomach issues. And as we know, my stomach generally hates me anyway.
--Humalog insulin, usually 5 units, depending on what I"m eating> I get 1 unit per every 12 grams of carbs I eat.
--a multivitamin w/ iron (since I"m anemic--always have been)

After breakfast and the pill regime, I head to work. I'm there about an hour before everyone else to do the early morning paper clipping.

9:30: 2 hour post blood sugar check. Usually eat morning snack around 10 and am drinking water (flavored, of course. For some reason my stomach really doesn't like "regular" water.)

11:30: Lunchtime! That means imuran (anti-rejection med), which is due at noon (again, an hour window), and humalog (usually about 7, unless I do Chipotle, which is an 8 or 9. Thank God most restaurants now have carb listing on their websites so I can figure it out pretty accurately.)

1:00-3:30 (or 4:00, if a session day): work

4:00 (or 4:30/5:00): home. Reading, Bible, work-out, etc.

5:00-6:00: make/eat dinner. More humalog. And more slow-mag. Usually calcium supplement here, too, since I don't usually have milk with my dinner (if you take calcium supplements while eating dairy or drinking milk you don't absorb as much.).

EVENING: M--sometimes Parish Council, W: Choir 7-9 (longer as we get closer to Christmas or Easter), Spiritual Life, baby-sitting, etc., etc. If I'm "home," then it's reading, practicing my music, and/or writing/working on my extraneous projects.

8:00 PM: Prograf time!
9:00 PM (roughly): Lantus insulin injection--this is a "24 hour" kind of thing that keeps my blood sugar levels fairly steady.
Evening pills around now, if I"m home, or whenever I get back:
---celexa
---lipitor (anti-rejection meds raise cholesterol, even in babies)

---MWF: the "pink" antibiotic, whose name I am forgetting.
---My second calcium
---The other 2x (Q12) drugs I listed in the AM.
So that is the drug regiment. BUT no more PFTs, nebulizers, etc! Huzzah!!!!!
I ma usually in bed by 10:30. I read/write in my journal before bed.

On the weekends I haul myself up around 8:15 to take Prograf, but other than that it's the same thing. Today I was at Branden's and gave myself insulin before lunch, as usual. Branden looked at me and said, "you didn't even flinch." I then explained that the only time the injections hurt is when you do it wrong (I.e., in the wrong place). Since I hardly ever do it wrong, it doesn't hurt. It's a small needle; they're designed to go in as smoothly as possible.

This may look like a lot but it's actually easier than the CF drugs were. I mean, my stomach would just KILL me on those. When I had MAC bacteria, I would be on a three drug cocktail. There was one time where it was those drugs, bactrim AND Cipro (which is strong and nasty. It's what they give you for anthrax!). Whew. That was nuts.

Of course there are occasional IV issues, but those are different story and I'm not jinxing myself by talking about them!!!

A face with the name

I was reminded last night of a story my mom told me in 2006, when Children's was running clips of my story as their feature on Channel 10 (the local CBS affiliate). Friends of ours were watching and they have three kids. The middle daughter, after watching the piece, turned to her mom and said, "Mom, I would give her my lungs."

(Insert cute noises here)

Besides it being just a cute story, it illustrates the main reason why I decided to be so "public" about my transplant and the events leading up to it. If people can put a face with the cause, the need for transplantation, I think the impetus for them to donate becomes much stronger. It's one thing to say that 18 people die in the US every day because enough organs are not donated. It's another thing to say that Person A is a computer scientist, with four kids and a dog and wife and who has season tickets to the Buckeyes. And that Person B is a six year old girl who loves Dora the Explorer and bath time with her baby brother but needs a new heart so she can play on her swing set and take dance lessons again. Or the college student who needs a new kidney so he can go to class instead of dialysis three times a week and keep studying criminology and play his violin with the orchestra.

Faces are so important. They bring the entire issue to vivid life.

Top 10 movies...but...

Not the way you think. From Rod's blog, what top 10 movies would you suggest to someone to tell them what life is really all about?? Here are mine:

1) The Wizard of Oz--"There's no place like home."
2) The Passion. 'Nuff said.
3) Life is Beautiful--happiness does not depend upon your circumstances. It's something you make inside yourself. And you have to live every day as passionately, fully and wonderfully as you can.
4) Groundhog Day
5) The Hours--an "ordinary" life isn't really ordinary if we pay attention
6) Steel Magnolias/Finding Neverland: what real friendship is about
8) Return to me--transplants, of course! And how love often means overcoming fear/insecurities/etc.
9) Persuasion: "All the privilege I claim for my own sex, is that of loving longest, when existence or when hope is gone."
10) Fiddler on the Roof--we need good music in life. And tradition. And dancing in a barnyard. :)

New blog!

Here is my new blog, dedicated just to my creative writing. Enjoy and leave comments!

SOHC 12: More SCHIP!

A little bit of differing Corner opinion:

More on SCHIP [David Freddoso]


From a reader:

I am still reeling from your comment to the effect that a family of four earning $50,000 a year ought to be able to afford health insurance.

Maybe we should also make these people eligible for food stamps, housing subsidies, and free cigarettes. Why should anyone have to pay for anything anymore?

Come on, people! We're talking about whether the government should pay for your two kids' health insurance plans when you make more than $51,000 a year (more than the new national median income). I know that health insurance is not cheap, but neither are your mortgage and car insurance. You're not going to ask the government to pay for those too, are you?

(I can already hear the answers coming in, so I'll get it out of the way now: those who cannot buy insurance for health reasons represent a separate problem that has a separate solution, not SCHIP.)

And then:

The Middle Class and Health Care [Ramesh Ponnuru]


David, I'm working on an article on health care for the next issue of NR. I'm slightly more sympathetic than you to middle-income families looking for relief from their health-care bills. But I'd look for a different solution than expanding S-Chip. Some of the states where health insurance is the most expensive are also states that have piled up the most mandates on insurance. It also appears that S-Chip itself helps to drive up the cost of private health insurance.

SOHC 11: What about those who need insurance?

Also from the Corner:

A fair question

From a reader, on SCHIP:

There are people, and families, who are unable to purchase health insurance at ANY cost because they have existing medical conditions. Insurance companies won't go near them. What exactly do you expect them to do for health insurance?

There are a variety of ways of handling this — states can set up risk pools (34 states already do this) and even offer subsidies within them for extreme hardship cases. But this has nothing to do with raiding a program for poor children in order to create a broad middle-class entitlement.

SOHC 10: SCHIP continued

From the Happy Corner: (emphases mine)

Is it charity to rob from the poor and give to the not-really-poor? That's what today's Washington Post editorial on SCHIP would have you think. The piece misses the point of new administrative criteria placed by the Bush administration on the State Children's Health Insurance Program.

This is not about blocking help to needy kids. Under any normal set of circumstances, children whose families make more than 250 percent of the poverty level (that's an annual income of more than $50,000 for a family of four, i.e. two children) do not need government assistance to get health insurance. Period. It amazes me that the argument to the contrary is taken seriously. Most conservatives can accept the idea of state governments reaching out to help the truly needy. But barring extraordinary circumstances, if you make that much money and you are not even buying insurance for your children, you should lose custody before you have any right to go on the dole.

As I wrote last week, this applies all the more given that no state has even managed to insure 95 percent of children who live at less than 200 percent of the poverty level. Why are states trying to insure middle-class kids when they have evidently failed in their mission to insure poor children?

For states that try to insure the non-poor (above 250 percent of poverty), there is also a new year-long waiting period between private insurance and SCHIP. This is intended to stop the non-poor (and their employers) from dropping private coverage and plundering a program that is supposedly for the poor. (Admittedly, the letter announcing the new policy is not exactly clear on whether the waiting period applies to everyone in such states, or just to applicants above 250 percent of poverty.)

The Post notes that this would affect 19 states and Washington, D.C. If it stops them from approving more applications for a middle-class welfare system, isn't that a good thing? If SCHIP is a program for poor, uninsured children, then Bush is doing exactly the right thing to keep it that way, to prevent states from spending down their block grants by using money on the non-poor that is intended for the poor.

books, books...more books

When I was in NYC, I, of course, engaged in serious shopping therapy. But the amount of books I bought was sort of obscene! An (R) means I've already read it... :)

At the World of Disney on 5th Ave.:
--Cooking with Mickey and the Disney Chefs--recipes from the parks, the resorts, and the cruise ships. Yummy.

At Theater Circle, next to John's Pizza and across from the Majestic, on 44th:
--Children of a Lesser God (the play) by Mark Medoff (R)
--Making It on Broadway (which has Patrick Wilson stories!) by Davie Wienir and Jodie Langel (R)

At Colony Music:
--The Musical Works of Boubil and Schonberg (R)

At the Strand, "18 miles of books" on 12th Ave. and Broadway (I think)...this place is like the Beast's library in Beauty and the Beast. I mean, stacks to the ceiling. Amazing. These are all OUP World's Classics (They were HALF OFF!!!):

--A. Dumas (fils) La Dame aux cameillas (R), the novel on which Verdi based La Traviata
--Kipling, The Jungle Books
--Henry James, The Golden Bowl
--Robert Louis Stevenson, South Seas tales
--Puskin, Eugene Onegin
And a tote bag and a button!

At the Met Museum of Art (on 5th Avenue, near the South end of Central Park):
--Between Salt Water and Holy Water: A History of Southern Italy (for my dad)
--Museum:Behind the Scenes at the Metropolitan Museum of Art (R)--v. good.

Other things I bought:
--A NYC apple pillow (NBC store)
--A "Live from New york...it's Saturday Night!" tee (NBC)
--Mickey as "The Sorcerer's Apprentice" (Disney)
--Pegasus from "Fantasia" (Disney) (NOTE: I have wanted these since I was a wee little barin. I'm so glad I have them!)
--A Phantom souvenir program (which, Thank God, are still only $10!!)
--A recording of Harry Connick Jr. in teh Pajama Game (for Mel)
--Certificates from Ellis Island that state my great (great?) grandfather, John M. Dorrian, immigrated from the UK (from London, but via Scotland...) in 1924, and is on the immigrant wall of honor there. (One for my mom and one for my grandma--his daughter (granddaughter? Need to figure that out)
--A Minnie Mouse as Lady Liberty Pen (Disney)
--Hard Rock Cafe shorts (HRC--Times Square)
--Martha Stewart Collection stuff at Macy's (Yes, I am weird)

Um I think that's it. Think that's enough??? :) :) The stuffed toys are SO CUTE!

Back!

Back from the glorious NYC transplant anniversary trip! More later, but here are a few pics to whet your whistle:

ICU 2001

I just wrote a post over at CPG about one of my ICU experiences in 2001. Head here to read it.

SOHC 9: SCHIP

There is no excuse for a country as wealthy as ours to allow innocent children to go without access to basic health care. And if policymakers take steps that result in a net increase in the number of children without access to care, they have a moral duty to find a way to fix that problem immediately. As far as I'm concerned, the Bush administration is morally responsible for what happens to the children who lose access to health care as a result of these new rules. If any of them die or suffer permanent harm from a condition that could have been prevented with routine care (and it's bound to happen), the Bush administration bears the blame.

While I think they are terribly misguided about the realities of health care policy, I understand that there are people out who, for principled reasons, believe that it is important to limit the role the government plays in providing health care to its citizens. And I understand that these folks believe in their hearts that if the market were simply left to work it magic, we'd soon find ourselves in a health care utopia where every child had top notch care. I know they don't mean any harm. But people like this need to realize that this isn't some grand experiment. We're not dealing with hypotheticals here. When policies like this are put in place, real children--ones with real hopes and dreams and fears--are made to suffer. Some even die. And that is unconscionable.

Opponents of government-funded health care often argue that most of the uninsured in this country are so by choice. Putting aside the merits of that (very weak) argument, it is undeniable that children do not choose to go without health insurance. They have no say in the matter. It is therefore unacceptable to treat children as pawns in a struggle over policy principles.

pulled from Left of the Dial

My piece: Again, they leave out some rather pertinent facts. The SCHIP expansions, if it went to 300% of the poverty level (which it would in Ohio, at least)means that a family of four making $60,000 (roughly) would be eligible for government funded health care.
Think about that. $60,000. Um, that's a pretty good chunk of change right there. As we have seen in the past EIGHT posts, where there have been actual numbers and statistics provided, expanding government health care is not a panacea for all our problems. In fact, it often makes thing sworse, like in the cases of CF kids in Australia.
Sure, kids do not choose to go without health care. But at the same time, adults should not be having kids that they cannot support! How about we start telling people tro stop having babies when they're 15 and unmarried and living in poverty anyway? How about we tell them to give the babies up for adoption? Why don't we address the root of the problem instead of saying that government needs to pay for the health care of everyone in America. If you start paying for kids who parent(s) are making $60,000 a year, then what's next? Oh, gee, it's coverage for those who make $70K and then $80 K. And then it's a government system like we have in England, Germany, etc., which, as we have seen, is so effective. Months for chemo therapies, crumbling hospitals, etc.

Yeah, lots of kids suffer and die. I see CF kids die, all the time, at Children's. And yes, we should prevent that--by funding research. How about we stop sending millions and millions of dollars to fights AIDS, which, is really preventable? Don't have sex! Don't use dirty needles! (Or don't use drugs in general...) I mean this isn't hard.
But the Left won't hear of it. We have to fund AIDS. We have to fund all these other things. As they say in The American President, "Government is choosing."
Yeah I probably sound like some cold-hearted conservative freak, but you know, I'm sorry. I want to see continual innovation in American health care. I want to continue to know that when my doctor orders a CT scan, I'm going to get it within the nerxt 15 minutes, not the next 15 days or weeks. When I need to see a specialist, we can arrange it quickly. If I need to get a bronch, I can get it within the hour, not within a month or six. That can make all the difference in the world.

From Washington State--presumed consent law

SEATTLE -- If you are one of the 3 million drivers who has an organ donation heart on your license, this [a]ffects you. (me: Grammatical errors in newspapers!!! ARGH!)

Following an exclusive KIRO Team 7 Investigation into how you could get tricked into donating your body to science -- rather than for life-saving transplant -- the state is making changes.

Lawmakers have already drafted a new Anatomical Gift Act. They hope to clarify exactly when researchers can legally get a hold of your corpse for purposes you didn't envision when you signed up as an organ donor.

While lawmakers debate the details, the Department of Licensing has already acted.

Driver's license offices sign up 98 percent of this state's organ transplant donors. It's always been as easy as clicking a computer key.

Too easy, says Nancy Adams.

KIRO Team 7 Investigators uncovered: The King County Medical Examiner's Office harvested body parts from her son, Jesse, without her permission, then traded them for money to a private research lab.

"His entire brain was taken, along with portions of his liver, his pituitary gland, his spleen, blood, spinal cord -- all taken without his permission," Adams said.

Adams sued over the organ-grab, but lost -- at least for now. A judge said coroners can take whatever parts they desire for "research purposes" as long as the deceased has an organ donor heart on their drivers license.

After we told DOL about the outcome of the case, that agency made immediate changes so donors were not confused about what "donation" means.

"We want to make sure people understand that there are other possible outcomes to signing up with us other than a life-saving transplant," said Brad Benfield of the Department of Licensing.

DOL offices will soon be handing out a new, clear concise two-page flier to drivers. It clearly states donors are agreeing to "research projects" -- as well as life-saving organ transplants.

Organ donor Grace Sutherland thinks that's a great idea.

"Most people take it for granted that if they are going to donate their organs, it's to someone living. I think that it's an absolute must that it be explained -- explained to them," Sutherland said.

DOL has also started waiving the $10 fee for removing the heart from your license in case you don't want to be used for research.

Folks can still restrict their organ donation to just live-transplants, but must contact LifeCenter Northwest, the holder of the donor list.

"It's in both of our agencies best interests for people to completely understand what they are signing up for."

I have read the new organ donor legislation that will be put forth in the coming session. It more clearly lays out who gets to make decisions about where your donated body or organs go. The changes also make our state law look a lot more like the federal law.

Yup, sounds like common sense to me. I certainly wouldn't want organs I had donated to be used for scientific purposes unless I said so. Glad they're working this out over there.

Vacay! Vacay!

Elle: Girls, I'm going to Harvard.
Friend: Ooooh, like on Vacay?
Friend 1 and 2: Road trip! Road trip!
--Legally Blonde

OK, so I'm not going to Harvard, but I am going on Vacay! My friend Lindsay and I are heading to the Big Apple for a belated 2 year tx anniversary trip. (We went to Chicago last year--for that trip, go http://beta.blogger.com/img/gl.link.gifhere) We leave Thursday morning and will come back Sunday afternoon around 6 ish. (I hope)

Highlights include: NBC studio tour, Statue of Liberty/Ellis Island, eating at Mario Batali's Lupa in Greenwich Village, shopping at World of Disney and Tiffany's, AND...

PHANTOM!

Which, as we know, is the best show EVER. :-D

SOHC 8: the UK's "Flagship" hospital

A young mother had to deliver her own baby in the lavatory of a flagship hospital because there were no trained midwives available.

Surveyor Catherine Brown had made the agonising decision to undergo a chemically-induced abortion after being told her 18-week pregnancy was risking her life.

But when the time came to give birth she was on an ear, nose and throat ward and had only her mother to help her through the ordeal. Her premature son Edward died in her arms minutes later.

The traumatised mother-of-one said: "I just howled and howled. I remember sitting there looking at him and thinking, 'What do I do next?'. I just sat there on the toilet looking at my dead baby.

"It was dreadful - a terrible nightmare. Then I started crying my eyes out and repeating, 'I'm sorry baby, I'm so sorry'. I still can't believe the hospital had no trained staff who could help me."

To compound Miss Brown's agony, the body of her child was almost discarded with hospital waste.

Her MP has called for an independent review of what he called "one of the most harrowing medical cases I have ever had to deal with".

The catalogue of errors unfolded at the £238million Queen's Hospital in Romford, Essex, which opened last December.

Eleven weeks into her pregnancy, Miss Brown, 30, started suffering abdominal pains. She was told she was suffering from a urinary infection which would not affect her pregnancy. But on the evening of February 21 she started bleeding and was rushed into hospital.

Her condition was stabilised with intravenous antibiotics and in the early hours of the following morning she was moved to a mixed-sex ear, nose and throat ward where a bed was available. She was placed in a doorless annexe of the ward and told to expect a scan in the morning.

By 5pm that evening she had still not had a scan. The procedure was only arranged at 7pm after her mother, Sheila Keeling, 51, threatened to make an official complaint.

Doctors discovered there was no amniotic fluid around the baby, meaning his chances of survival were minimal.

Miss Brown was told her own life was threatened by her condition and, following a consultant's advice, she took the devastating decision to undergo a chemically-induced abortion late that evening, after which she was moved into a private room.

At 4am on the following morning she went into labour but complained she had to wait an hour for gas and air to help with the pain.

With no professional help available, she decided to go to her en suite bathroom and stand over the toilet, which had a disabled bar for support, because she had given birth to her son, 18-month-old Matthew, in an upright position.

Her mother spoke of her fears that she was going to lose her daughter as well as her grandson, because she was bleeding so heavily.

"I was running around frantically trying to find gas and air for her and pleaded with nurses, who seemed very matter of fact, to assist," she said.

"The staff I did find told me they did not have the training to help. Catherine was left to deliver the baby alone with just me for help before cleaning herself up and going back to bed. It was horrific."

But their trauma was still not over. Miss Brown said staff almost took Edward's remains away for disposal despite her informing the hospital she wanted to hold a funeral.

"They didn't even record the details of Edward's birth. But he did exist. And more than that, he was a very special little boy.

"Hopefully he has made sure that other families won't have to go through what we did. We'll never forget him."

Tests later revealed Miss Brown had septicaemia, possibly caused by the placenta failing to implant properly.

Miss Brown, who lives in Hornchurch and has split with Edward and Matthew's father, said the mental and physical toll of her experience meant she had to stop work as a utility surveyor and is only now close to recovering.

Fighting back tears, her mother said: "It was really hard watching my daughter go through that. No one was there to reassure us and make us think they knew what they were doing."

Miss Brown's MP, Conservative-James Brokenshire, said: 'The catalogue of errors and blunders is quite disturbing. There appear to have been systemic issues and potentially issues about individual members of staff.

"While changes have been made by the hospital it is such a horrific story I want everything to be closely scrutinised.

"This has to be one of the most harrowing medical cases I have ever had to deal with.

"Catherine almost died and she later discovered the baby had nearly been disposed of with medical-waste."

Queen's Hospital was opened at the end of last year, taking over maternity services from Oldchurch Hospital in Romford.

Women more than 20 weeks pregnant who experience complications are seen by A&E and sent to the maternity unit if necessary.

Those under 20 weeks also go through A&E but are referred to gynaecology if problems continue.

However, there was not a dedicated gynaecology unit when Miss Brown was admitted, meaning patients were sent to a ward where a bed was available. The Barking, Havering and Redbridge Hospital NHS Trust offered its "sincere condolences" to Miss Brown.

A spokesman said: "We have now established a separate gynaecological A&E service, staffed by gynaecological, medical and nursing staff with access to the Early Pregnancy Assessment Unit.

"From the end of this month, there will be a dedicated gynaecological ward, with the Early Pregnancy Assessment Unit situated within it. This will ensure dedicated and appropriate care."

Me: Yup, that's what socialized health care brings us. Geniuses like this. "Oh, gee, maybe we need a dedicated OB/GYN floor! Maybe we shouldn't put them in with the ENT cases!"

SOHC 7: IN Old Bavaria

Corner again!

Krebs in Deutschland [Jonah Goldberg]


From a reader:

Jonah,
I'm a cancer survivor who was diagnosed in Germany. After two months in
the limbo that is Germany's national health care system, I realized it
would probably kill me so I returned to the U.S. for treatment. My
chemotherapy started on the same day I saw my oncologist in New Jersey.
Eleven years later and I'm still here. I wonder what the survival rates
are in the UK?

Me: points if you know the musical the title alludes to. :)

SOHC 6: Oh, Canada!

h/t: Corner!

Re: Does Michael Moore know this? [Mark Steyn]


Jonah, never mind seven-month waits for cancer treatment in Scotland. As I say somewhere or other in my book, it's the ten-month waiting list for the maternity ward:

A Canadian woman has given birth to extremely rare identical quadruplets.

The four girls were born at a US hospital because there was no space available at Canadian neonatal intensive care units... Autumn, Brooke, Calissa and Dahlia are in good condition at Benefis Hospital in Great Falls, Montana...

Health officials said they checked every other neonatal intensive care unit in Canada but none had space.

The Jepps, a nurse and a respiratory technician were flown 500km (310 miles) to the Montana hospital, the closest in the US, where the quadruplets were born on Sunday.

Well, you can't expect a G7 economy of only 30 million people to be able to offer the same level of neonatal ICU coverage as a town of 50,000 in remote rural Montana. And let's face it, there's nothing an expectant mom likes more than 300 miles in a bumpy twin prop over the Rockies.

SOHC 5: Scottish Cancer patients can wait 220 days

220-DAY CANCER WAIT HELL
Victims' agony over targets failure
By Natalie Walker
CANCER patients are still waiting up to seven months for treatment.

Patients are supposed to be treated within 62 days of urgent referral.

But figures out yesterday showed only three areas in Scotland were meeting those targets every time.

In the worst cases, sufferers were kept hanging on for 220 days.

The figures, for the first three months of the year, show 85.4 per cent of patients across Scotland were seen within 62 days.

The target set two years ago is 95 per cent.


Yesterday's figures were up six per cent on last year but down slightly on the previous quarter.


Health secretary Nicola Sturgeon promised to take action.


She said: "It is vital patients get the best treatment, appropriate to their needs, as quickly as possible.


"I have demanded weekly reports on progress from all health boards to ensure they get on track to meet the target."


Orkney, Shetland and Argyll and Clyde, which is part of NHS Highlands, achieved a 100 per cent score for cancer patients being treated with two months. Lanarkshire had the poorest performance, with just 70.3 per cent of patients being seen within the target time.


It also had the longest maximum waiting period of 220 days for some cancers.


The Highland area as a whole fared poorly, with 73.6 per cent of patients being treated on time.


Conservative MSP Mary Scanlon said: "The figures underline the failure of the Lib-Lab pact to meet its promise and the huge tasks facing the new minority government.


"Nicola Sturgeon must live up to her pledge of meeting the 95 per cent target by the end of this year or she too will be guilty of giving false promise and false hope."


Earlier this year, Sturgeon revealed plans to send troubleshooters to boards with the worst waiting times.

From the funny political file...

There is not a 'good idea' clause in the Constitution-- Chief Justice John Roberts

Popcorns!

OK after four rather wonky posts on health care, I think it's time we have some fun, don't you? So, some popcorns!

First, a DVD:

Miss Potter: Renee Zellwegger, Ewan McGregor, Emily Watson. I have, as you may have noticed, had this on the "what I'm watching" list for, oh, about a month now, and just hadn't gotten around to it. I am so glad I finally did! Zellwegger plays Beatrix Potter, author of the Peter Rabbit books, when she's 32 years old, unmarried, and living with her very socially-conscious mother and her lawyer father (who is the only one to actually support her art). Beatrix meets Mr. Warne, the man who will publish her books, and the two fall in love, much to the strenuous objections of Beatrix's parents. There are also several well-done flashback sequences showing Beatrix as a young child, learning to draw and making up stories for her brother Bernard. It is a fantastic movie (I actually cried--I NEVER cry during movies. Never.), with wonderful performances by the two leads, and also by Emily Watson, who plays Mr. Warne's unmarried sister and Beatrix's friend Amelia (Milly).

And a current release:


Becoming Jane: Anne Hathaway (The Devil Wears Prada), James McAvoy (Narnia), James Cromwell (The Queen, Babe), Maggie Smith (aka Prof. McGonagall, for you Harry Potter fans).
All right, yes, I am obsessed with Jane, as we know, and I went to see this with two of my Janeite friends, so we had high expectations, which were all met. Hathaway plays a twenty (ish) Jane Austen, the youngest daughter of Rev. and Mrs. George Austen, who has just begun to write her novels. Her mother is pressing her to marry the nephew of the local nobility (Maggie Smith), but Jane is resistant, wanting to be in love with the man she marries. But, as her mother says, "affection is desirable. Money is absolutely essential." During an engagement party for her older sister, Cassandra, Jane meets Tom LeFroy (McAvoy), a young Irishman who is studying the law in London under the thumb of his tyrannical uncle, who has sent him "to the country" in the hopes that it will tame his rather libertine ways.
Jane and Tom do not hit it off at first, but gradually the develop a relationship. Problem: Jane, as one of eight siblings (including George, who is deaf in the film but epileptic in actuality), and the daughter of a minister, has no money. Tom has several older sisters to support back in Ireland. Where do you think this is going to go? The film also highlights the relationship of Henry (Jane's favorite brother) and the Austen's wealthy French cousin, Eliza de Feuillde, whose husband died in the French Revolution. The rest of the Austen clan isn't seen.
The acting is superb. Anne Hathaway does an excellent job as Jane (she learned to play the piano for this role) and her accent is very convincing. James McAvoy is a very effective Tom (and a cute one), whose character arc from womanizer (sort of) to a man torn by duty and his love for Jane, is very well done. I especially enjoyed the ending of the movie, even if there is little possibility for it to have happened in actuality. The script is also peppered with humor and wit, which is befitting for a movie about Jane!

SOHC 4: CF kids in Australia

In Australia, where they have the much-vaunted "single-payer" or "universal" health care, this is the situation for CF patients:

YOUNG adults with cystic fibrosis are having to share a ward with children because the Royal Adelaide Hospital is refusing to take new patients.
About 20 adults, aged 18 to 20, are still being admitted to the deteriorating medical ward of the Women's and Children's Hospital for life-saving treatment because the RAH lacks resources to care for them, patients say.

The situation has created a bed shortage in the WCH, with cystic fibrosis (CF) patients being put on waiting lists for treatment.

And patients said they would refuse to transfer to the RAH unless the State Government funded urgent improvements to the RAH – the only hospital in Adelaide able to provide specialist care to adult CF sufferers.

One specialist and up to six nurses in the RAH's S2 ward are responsible for the care of about 120 patients a year.

Pictures of the S2 ward supplied to the Sunday Mail reveal holes in the walls, ceilings and floors, and broken equipment.

One patient was so desperate for hospital care she accepted a bed last week at the RAH in a bay that had been converted into a store room, sharing it with broken beds and medical equipment.

"I was desperate. There were no beds so I took the storage room – when you are really unwell you need the rest to get better," Gloria Lancione, 23, of Wynn Vale, said.

Carolyn Collis, whose sons Kyle, 20, and Daniel, 18, have CF, said services had reached a "crisis point" with the chest clinic "vastly understaffed".

The Hillbank mother this month launched a petition, addressed to Health Minister John Hill, demanding immediate action to improve the situation at the RAH. Among concerns were:

PATIENTS having to self-administer drugs because of a lack of staff.

PATIENTS sharing the ward with people with emphysema, tuberculosis and infectious diseases.

CF patients sharing IV pumps because of a lack of equipment.

PATIENTS being pressured into home treatment to ease the strain.

Parents want another full-time CF specialist doctor at the RAH, more nurses and a wholesale makeover of the ward, Ms Collis said.

"The state of that ward is affecting their health and a lot suffer depression," she said.

"It is cold, old, dull and depressing. A new hospital in the future does not help the crisis that we are in now."

Daniel Collis, who is treated at the WCH, said: "It gets hard because I still have to get up in the morning and go to work, and sometimes I don't get any sleep for three weeks because of babies crying."

But he cannot fault the level of care compared to what older brother Kyle receives at the RAH.

More often than not Kyle chooses to administer his own drugs because of work commitments and the lack of staff at the RAH – even if it means no ongoing monitoring of his health.

"Really, the state of the RAH is shocking," Kyle said. "They are promising a new hospital in 10 years, but we've got an average lifespan of 30, I'm 21 this year, what am I going to be like at 30?"

Ms Collis met with RAH CEO Virginia Deegan, and nurses on Tuesday.

She said Ms Deegan had acknowledged improvements were needed but had said nursing numbers were adequate.

A focus group of parents and nurses will meet next month.

In an emailed statement, Mr Hill said $420,000 a year has been allocated from June 1 to set up a statewide CF service, including the recruitment of more staff.

"This service . . . will focus on the way our health system cares for people with CF, including their treatment at the WCH and the RAH, and broader issues such as support . . . in the community," he said.

"There have been major gains made in recent years in treating this disease with . . . more people with CF living into their 30s."

SOHC : data (part 3)

Continuing...some data I have gleaned from various sources on Canadian versus American health care:

WAIT TIMES:
24% of Canadians waited 4 hours or more in the ER, versus 12% in the US
57% of Canadians waited 4 weeks or more to see a specialist, versus 23% in the US
21% of Canadian Hospital Administrators said it would take over three weeks to do a biopsy for possible breast cancer on a 50 YO woman, versus less than 1% of American hospital administrators.
50% of Canadian hospital administrators said it would take over 60 months for a 65 YO to undergo routine hip replacement surgery, versus none of their American counterparts.

MEDICAL PROFESSIONALS:
Canada has fewer doctors per capita than the US--the US has 2.4 doctors per 1,000 people, while Canada has 2.2. (2005)
Many Canadian physicians go to the US for post-graduate training in medical residencies, since new and cutting-edge sub-specialties are often more widely available in the U.S. as opposed to Canada.

TECHNOLOGY
2004: Canada had 4.6 MRI scanners per 1 million people; the US had 19.5 million. Canada has 10.3 CT scanners per million people--the US has 29.5 million.

MONOPSONY--outlawing private medical care for services covered by the public health plan.
--Those with non-emergency illness such as cancercannot pay out of pocket for time-sensitive surgeries and must wait their turn on waiting lists.
--The Canadian Supreme Court ruled in 2005 (Chaoulli v. Quebec that waiting list delays "increase the patient's risk of mortality or the risk that his or her injuries will become irreparable." This ruling is expected to lead to greater privatization efforts.

Do we STILL think that this is the way to go? Cancer patients being put on waiting lists for surgeries and chemo? More than four months to see a specialist? Fewer than 5 MRI scanners for every million people in the country? Being unable to have a surgery when you need it, even if you can pay for it, because the government says no???

SOHC: The European Utopia

The following are all taken from Dr. Theodore Dalrymple's article, "Health of the State"in the Aug. 13, 2007 edition of National Review. . Dr. Dalrymple worked as part of the British National Health Service for 20 years.

To avoid public criticism of the NHS in Britain is like avoiding evidence of dictatorship in North Korea: It is possible only for the willfully blinkered.

In its most successful period, the state-run NHS was possibly the least bureaucratic system in the world: far, far less bureaucratic than the American free-enterprise, or increasingly corporatist, system. This was because doctors were still the most powerful group within it...in return for their salary, the doctors had effective control of most things, including who got what. They neither knew nor were interested in what anything cost: Rationing was informal and implicit rather than formal and explicit as it is now, and quite without bureaucratic controls or costs. The NHS also had the cultural capital of the hospital system that existed before it.

But there were problems from the first. Chief among them was that capital expenditures came to an immediate halt after the NHS was begun

EMD: so no new hospitals, new infrastructure, nothing.

Fewer hospitals were opened in the first half-century after the start of the NHS than in the 1930s alone. The result has been that the vast majority of NHS hospitals are now run down institutions...the one in which I worked was a 19th-century workhouse.

The NHS was founded on the supposition that, as the population grew healthier thanks to its socialized ministrations, health-care costs would decline. The exact opposite was the case, of course: Not only did health care become vastly more expensive, but the population aged fast and needed ever more such health care. Government funding form general taxation always limped behind what was necessary to keep up with demand and with technological developments. Waiting lists for expensive investigations and procedures lengthened as shortages became even greater. Emergency care remained good, but at the expense of almost everything else.

Expenditure has increased 300 percent in ten years, but most people believe that very little, if anything, has changed for the better, and some for the worse...[h]e who pays the piper calls the tune, at least eventually. For many years tye government refrained from interfering very obviously in the running of health services in Britain, but it has increasingly set targets for hospitals and doctors to meet, and interfered with the minutiae of medical practice, laying down who must be treated first, and with what treatment.

Manager in the NHS now often decided on the priority of patients' operations, not on clinical grounds, but according to government targets; they scour the wards for patients they believe can be discharged; they set priorities in the emergency rooms, again not according to clinical criteria, but in according to the need to meet government targets. Manager now screen all referrals to psychiatrists and decide which patients the psychiatrist should see, which is a fundamental breach of medical ethics. A central organization, the National Institute for Clinical Excellence, lays down what drugs may be prescribed by doctors in the NHS.Now of course problems such as the ones I have just mentioned exist in all systems where payment for medical services is made by third parties. But to make a single, all-powerful third party--and the government at that--responsible for all such payment is to magnify and compound the problem.

Variation in morbidity and mortality between the social classes in Britain is as great as it was before the NHS was instituted, and possibly greater. [Michael] Moore [in his film Sicko] does not tell us about waiting times in the NHS. (I remember one patient, a man of 70, who had had a hernia diagnosed seven years previously. HE was put on a waiting list for an operation, but hearing nothing from the hospital for seven yearswrote a letter to enquire when he would have his operation. He received a letter telling him to wait his turn. In a system such as the NHS, an apparently rational and just reason not to operate on him--i.e., there was something more urgent to be done--can always be found.) He also fails to tell us there has been a rising tide of public dissatisfaction with the NHS; that 75 percent of senior doctors in Britain want to retire as soon as possible...that the results in the NHS for many cancers and heart conditions are among the worst in the Western world; that the hospitals are filthy and that the rates of hospital infection are also among the highest.

Before the NHS...75 percent of the population had private medical insurance, and they couldn't all have been rich

It is clear that the American systems leave a lot to be desired--as do most systems. It is expensive and not particularly effective when viewed from the point of view of public health. It has strengthens...for example, that it is by far the most innovative and performs by far the most important medical research in the world. Nor is it even a complete public-health disaster: life expectancy at birth in the Untied states increased from 75.4 years in 1990 to 77.5 in 2003.

The Saga of Health Care #1

I can tell this is going to be a semi-regular feature here in the bucket, so I'm going to kick it off with a few posts right off the beat. Some of these will be rebuttals (as this one is), some will be informative, and some will be ranting. :) So without further ado, installment 1 in the SOHC series: (this I got fro Lieft of the Dial. My comments in bold, and emphases

Laboratories of Failure

Another fine column pointing out the absurdity not only of our current health care system but the flaws in one of the most common arguments in favor of keeping it.

This is a consistent theme among opponents of universal care. They act like universal care is some crazy utopian fantasy like communism that has no realistic prospect of working and has failed miserably whenever tried. They never acknowledge the fact we are the outliers, that every other first world country has long since moved to a system of universal care and that there are now a multitude of different, fully-functioning systems out there for us to choose from. In other words, we're well past the experimental stage. It's like mocking someone's idea for a "flying machine" in, say, 1954 ("when that contraption crashes it will prove to the world that man was never meant to fly!").

I thought this comment also explained quite nicely one of the reasons we haven't made any serious progress on this issue, despite the majority of Americans haing the current system:

Under a socialist health care system, the government hires all the doctors, nurses and other health professionals. The government owns and runs all the clinics, hospitals, ambulance services — the whole enchilada.

Anyone who thinks that system is absolutely no good better be prepared to explain why presidents, Cabinet members, 535 members of Congress and the whole sprawling U.S. military find it overall satisfactory or better. Because that's exactly the health care system those Americans have.

In other words, the politicians already have the best system in the world. So they have no pressing need to fix ours.

Because, after all, they got theirs. Screw everyone else.

Although that's not even the system folks are really clamoring for.

What folks on the left want is a single-payer, universal health insurance system, with the federal government doing the honors. So, consumers get the coverage they need at a price they can afford for care from whomever they choose to get care from.

Businesses get relieved of the burden of co-funding expensive insurance plans. They also will be relieved of the temptation to push 59-year-old Marge, who's already had a lumpectomy, into an early and meager retirement because she (and other less than completely healthy older workers) will run up the premiums for the whole company if they're kept on the payroll.

Well. That does sound radical.

EMD: Well, as usual, this is posted without any sort of reasoning, data, etc., except perpetuating the whole fantasty that if we had single-payer health care, life would just mbe this magical fantasy land where everyone had magic health care and we'd just all be the healthiest people ever.
In the next post I'm going to regale you with ACTUAL facts about how this supposedly great system works in these counties and what is actually means.

"Survival" rates

I was reading a story on MSNBC today that talked to a CF patient, woman, in her 30s, who was trying "unconventional" treatments for her disease--she doesn't take antibiotics, doesn't do normal aerosols (she does some sort of non-drug thing, I don't know). Anyway, her brother had CF and he had a transplant, and is now doing really well.
But anyway, the article mentioned that it was easy to see why the woman didn't want a transplant since the "survival rate is only 50% after 5 years."
OK, let's get real for a minute. First off, most people, w/o the transplant, aren't looking at years. They are looking at months, weeks, days. Years are an ephemeral concept. The transplant will give you a year, at least, hopefully. The transplant survival curve is a lot like the CF survival curve--it keeps growing. Five years is alot better than you would've had pre-transplant. I hate it when people put things like this in terms of calendar time. You don't gauge life like that. Look at what can happen in a year, two, five...and 50% is just the average. You can live longer. People are so afraid of statistics. They see five years or 10 years and they think, whoa, I'll only be like 33, or 28, or whatever. I mean what about all the stuff I want to do?
Hard truth--you might not be around for them w/o the transplant. And really, do any of us know what we'll be around for? None of us know that.
"Life is not made up of days, but of moments."
Get out there and get some. And stop worrying about stupid statistics and averages.

CF/TX books

I just received two new books from Amazon today, one called "Breathing for a Living" and the other, "A Little Love Story." The first is a memoir of Laura, a girl who had CF and received a double lung tx in July of 2001. Unfortunately she had a lot of complications and died in 2003. The second is a novel about a man who dates a woman with CF (who also happens to work for the Governor of Massachusetts...yeah I am really liking this one so far. :)). I will let you know what I think once I've finished them, but the novel is really good so far, and some of the proceeds go to the CF foundation. So if you're a reader, you *may* (wink) be getting this book from me for Christmas. Ha.

This could be...

The. Best. Quote. Ever.

"Emily invited us to her apartment. It was like Catholic Disneyland." --Mike B., at today's Parish Council retreat

Wacky

Well, it's me we're talking about, so I guess that's not unexpected... :)
I went for a "follow-up" at The Resort today to see what was going on after last week's little visit. Apparently, I'm just weird, because my PFTs were better than they've ever been (62%, up from the last high of 60% in June), DLCO was fine, NiOx was fine (still a wee bit high for me, but oh well) and the three "box" tests we ran were fine. So I don't know. :) And I lost weight so I guess the lasix is working. Yay!

But I got to see Dr. M, which I never get to do anymore, so that was great. After a lot of years going to her when I looked/felt like crap it's nice for her to see me when my PFTs are 62%, as opposed to 28%. Wow. When you look at those numbers it's kind of amazing, eh? Of course, I'm sure she also enjoys knowing that I no longer weigh 90 pounds. :) (She's probably the only one--ha!)

GRRR--From the Corner

We've discussed this here before, but this is just RIDICULOUS...

A manny is the cute new term for a male nanny. Mannies are newly popular among the well-staffed set in New York, Greenwich, Ct and similar locales. The idea is that your kids— sons especially — get a little more sports and rough-housing with the babysitting and less of the mollycoddling and all female environments too common in homes where dad works till all hours.

I was wondering if we should call the government of Michael Bloomberg, here in NYC, a "manny state" instead of the clichéd "nanny state." But, considering his latest initiative, the answer must be no. In fact, we are regressing to the "baby nurse" state. Having banned smoking and transfats from restaurants, the mayor is now focused on the eating habits of those too young to patronize the city's eateries. Specifically, as of yesterday, the mayor has begun a major push to get new mothers to breast feed their infants. Apparently only a quarter of NYC moms choose to do so at the moment, and he wants to triple that number in a few years. He is starting by having city-owned hospitals deny new mothers formula.

Let's stipulate that breastfeeding is healthier, more nutritious and cheaper than formula feeding; it may even have a marginal positive effect on IQ. (Nursing does require time and knowledge not universally available to execute properly— which is why it is largely the preference of better-educated women.) Just as forgoing transfats and smoking are objectively healthier choices — and yet is not the state's responsibility to make.

Still, this is a new, shocking level of intrusiveness into what should be an entirely personal decision. In fact, this is far more egregious than either of the previous policies — which apply to what are already regulated commercial establishments. How to feed one's own infant is about as intimate and personal a decision as families make.

So why is he doing it? Is it meant to compensate for his failure to pass his traffic congestion-pricing plan? Or his failure to make significant improvements in educating the city's public school children? Is this meant to give him a competitive advantage in his hinted-at presidential campaign? Is the never before heard of "breastfeeding issue" an instance where both the GOP and the Democratic party have failed to address a critical social problem, and the unique Bloomberg approach is required? Is it a midsummer joke? A parody of a conservative take on ultra-liberal, statist politics? Is he trying to out-feminine Hillary and John Edwards? Is it to take attention away from the New York Times revelation that his vaunted subway rides to work begin with a chauffeured SUV trip to an express stop?

What about those of us that CANNOT breastfeed? Huh? What are we supposed to do, Mayor Bloomberg? I guess the answer is move out of NYC--pronto.

Nutty stuff

So I went in to "the Resort" for a visit on Friday--my ankles and hands had been swelling up lately, and I'd gained like 7 pounds for no explainable reason, so I thought (with some maternal prodding) I'd call and let them know what was going on.
We did PFTs, NIox, Diffusion levels, labs, all that good stuff. Everything looks OK, so we're on lasix (a diuretic) for a bit, to reduce the swelling and hopefully get rid of the extra weight that has magically appeared. We'll see...

1,000 hits!

Wow, thanks guys. :)
Nice to know someone other than my parents read this!!

Cooking with the kiddos

Last night I had the Rugrats (aka, the kids I baby-sit for :)) over for a few hours, in which we watched Matilda, played Scene It? (Jack's sports version....not so much for me ), had dinner and I taught the kids how to make chocolate chip cookies.
This was a lot of fun, actually. I had them read the recipe and tell me how much of each ingredient we needed. I taught them the difference between measuring white and brown sugar, and Helen learned how to crack and egg and beat it, which made Jack happy because now Helen can "make him scrambled eggs," as he gleefully informed their dad when he came to pick them up. They watched me mix the ingredients and helped shape the cookies. We made a bunch of trays, so they got to take quite a few home, and I hope they didn't eat them all in one sitting! I also got to teach them the difference between baking powder and baking soda, and show them what real vanilla beans look like (they were pretty amazed that it came from the orchid plant). I love cooking, as we know, and it was alot of fun to be able to teach some basic things to them, since I was about Helen's age (12) when I began to really start baking; I'd been making spaghetti since i was eight!

The cookies we made, by the way, are the best chocolate chip cookies ever. They bake wonderfully, freeze wonderfully (GREAT at Christmastime) and a really easy. I know you probably want a recipe. But I don't know if I'm will to share my secrets.

I also made them cornbread for dinner, following Danielle Bean's super-easy, and super-good, cornbread recipe, which you can find here.

Bookshelf time!

It's been awhile since we've had a book update, so for those of you who care: (all two of you...ha!)

--I am almost done with the Great Jane Re-Read; I just have to finish Sandition, which will probably happen today. I loved Lady Susan and the Watsons. I may start her juvenalia, which I've never finished, but we'll see. I also want to read her nephew's biography, A Memoir of Jane Austen, which, again, I have but have never read. :)

--Still reading Ovid's Metamorphoses, but that takes a lot of time and concentration so I'm not reading that as often.

--Picked up FS Fitzgerald's This Side of Paradise at the Book Loft last week, so that should be good. :)

--Just finished Ann Pachett's Truth and Beauty, which is a memoir of her friendship with the author/poet Lucy Grealy. Very good, and it makes me want to read the rest of her novels; so far I've only read Bel Canto, which was fantastic, about a group of Souther American terrorists who take over a birthday party for a Japanese business executive, at which a world-famous Soprano happens to be singing (yeah, I enjoyed the soprano part...lots of opera talk!).

--Still reading W&P. This might turn into the Great Fall Russian Novel Project at this rate.

--Also still reading B XVI's book--I plan to make more progress on that today...You know, in between cleaning bouts...ha.

A little old but--mice helping the Lung tx cause

First lung transplants in mice lay groundwork for new drugs to prevent transplant rejection in humans

By Caroline Arbanas


July 11, 2007 -- Lung transplants have been performed successfully for more than 20 years in humans but never before in mice - until now. Surgeons at Washington University School of Medicine in St. Louis have developed the first mouse model of lung transplantation, and they're hoping it will help explain why the success of the procedure in humans lags far behind other solid organ transplants.



Several School of Medicine researchers discuss the importance of an accurate mouse model for studying lung disease in humans.
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Ultimately, the mouse model could pave the way for developing new therapies to prevent lung transplant rejection - a major problem that limits the long-term success of the procedure. The mouse model is described in the June issue of the American Journal of Transplantation.

Five years after lung transplant surgery, only about 45 percent of patients are still alive, according to the U.S. Organ and Procurement and Transplantation Network. This compares with five-year survival rates of about 70 percent for heart and liver transplants and about 80 percent for kidney transplants. About 1,000 lung transplants are performed each year in the United States.

"The high failure rate of lung transplants is a huge problem," says lung transplant surgeon Daniel Kreisel, M.D., Ph.D., an assistant professor of surgery and a lead investigator of the research. "Unlike other organs, lungs are constantly exposed to bacteria and viruses in the environment, and we think this exposure increases the risk of chronic rejection and the eventual failure of the organ. This is why the mouse model is so critical. It will allow us to understand the molecular mechanisms that control lung transplant rejection."

Lung transplants are the only treatment option for end-stage lung disease, including chronic obstructive pulmonary disease (COPD), cystic fibrosis, pulmonary fibrosis and certain congenital lung defects. Following a transplant, patients must take drugs for the rest of their lives that suppress the immune system and prevent it from attacking the new lung. This leaves them vulnerable to upper respiratory infections, which can quickly develop into pneumonia.

Kreisel and others suspect that these illnesses alter the immune response and increase inflammation, which eventually lead to chronic rejection. They note that mainstay immunosuppressive drugs simply are not effective at preventing chronic rejection for lung transplants, and they hope the mouse model will reveal why.

"The current hypothesis is that lung transplant rejection is linked to chronic inflammation from transient viral or bacterial infections, and this can be aggravated by the fact that transplant recipients are taking immunosuppressive drugs," Kreisel says.

Mouse models for heart, liver and kidney transplants have existed for years, but developing a similar model for lung transplantation has proved to be a real technical challenge. Mouse lungs measure less than an inch in length and the pulmonary vein and artery, which carry blood to and from the heart, are as thin as human hair.

Mikio Okazaki, M.D., a postdoctoral fellow, adapted the lung transplantation technique used in rats to the mice. He uses synthetic cuffs to join the donor vessels with those of the recipient. Okazaki has successfully performed several hundred lung transplants in the mice, and the team's analysis indicates the model simulates the same immune response that occurs in humans following lung transplantation.

Before Okazaki and his Washington University colleagues developed the mouse model, researchers had been studying lung transplantation using a nonphysiological mouse model in which a small section of trachea from one mouse was transplanted under the skin of another. Although it was simple to create, the model did not accurately mimic lung transplantation. "It was a very artificial model that had little to do with reality, Okazaki says. "We think the new model will be far better for studying the underlying immune mechanisms that lead to rejection."

The new mouse lung transplant model has an advantage over those in rats and larger animals because the genetics of mice are well documented and their genes are easier to manipulate. "With the mice, we can selectively delete genes to study their function in the transplanted lung or in the recipient, which we've not been able to do effectively in other animal models," says Andrew Gelman, Ph.D., an assistant professor of surgery, who is a lead investigator of this research. "By understanding the genes that control lung graft survival, researchers will be able to better guide the development of therapies to counteract chronic rejection."

The mouse model also will allow the researchers to investigate how other transplant-related complications affect the long-term success of the procedure. Many lung transplant patients experience gastric reflux, and doctors suspect this acid exposure damages the lining of the lung and further exposes the organ to pathogens. The mouse model will let researchers evaluate whether gastric reflux increases the risk of lung rejection.

Additionally, the time between surgery to harvest a donor lung and transplant it into a patient is widely suspected to affect its overall function after transplant surgery. The mouse model will help pinpoint the inflammation that underlies damage to the organ when it can't be transplanted quickly and may lead to ways to prevent such injury.

Based on mouse models of other solid organ transplants, researchers have learned that different groups of immune cells contribute to rejection in different organs. "Rejection of the lung differs from rejection of the heart in terms of the cells that participate in that rejection," says Alexander Sasha Krupnick, M.D., assistant professor of surgery. "Every organ is different. What we've learned about rejection of the heart in mice does not apply to lungs. So we are thrilled to finally have an acceptable mouse model of lung transplantation to help us discover ways to increase the success of these transplants in humans."



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Okazaki M, Krupnick AS, Kornfeld CG, Lai JM, Ritter JH, Richardson SB, Huang HJ, Das NA, Patterson GA, Gelman AE, Kreisel, D. A mouse model of orthotopic vascularized aerated lung transplantation. American Journal of Transplantation. June 2007.

Grants from the National Heart, Lung and Blood Institute, the Thoracic Surgery Foundation for Research and Education, and Roche Pharmaceuticals supported this research.

Washington University School of Medicine's full-time and volunteer faculty physicians also are the medical staff of Barnes-Jewish and St. Louis Children's hospitals. The School of Medicine is one of the leading medical research, teaching and patient care institutions in the nation, currently ranked fourth in the nation by U.S. News & World Report. Through its affiliations with Barnes-Jewish and St. Louis Children's hospitals, the School of Medicine is linked to BJC HealthCare.

In memory

One of the Children's transplant patients died yesterday, which makes everyone involved in the program sad, especially since we're a tight-knit group (there aren't too many of us, yet...and those of us who were transplanted earlier [like this one] tend to know each other fairly well since we were the founding patients, so to speak). Any time I hear of a transplant patient's death, especially one of the Children's kids, I am reminded of how truly fleeting life is for all of us and how grateful I am for my transplant. We need to be grateful for every day, every moment that we get, because you never know when it's going to be it. Rejection, for us, can happen any time, and sometimes there aren't even any symptoms. In this case, the little boy was sick for a few months, but he seemed to be getting better. His mom had just talked to my mom the other day about the possibility of baby-sitting for them sometime.

It has been a sobering day for all of us. Prayers and good thoughts would be especially appreciated. He had a great family who loved him so much, and they are wonderful people. His short life was totally filled with love.

Harry Potter!

For my thoughts and impressions, go
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In a word? AWESOME!!!!

Unbelievable!

Poor Jane!

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I'm still here :)

I'm still here, no worries, life has just been crazy lately!
Saw the new Harry Potter over the weekend (popcorn coming!), then yesterday I was reading, reading, more reading, and today I had my fitting for my bridesmaid's dress for Di's wedding, dinner at home and baby-sitting the affectionately called "Rugrats," which involved Scattegories, power point and the Reds game. Whew.

Anyway, on Thursday I go to The Resort for my two year tests...woohoo! This involves a bone density scan, the 6 minute walk, a VQ scan (basically some sort of scan that looks at gas diffusion in my lungs), and a visit with Dr. Hardin in the endo clinic. Oh the joy that will be mine! :) But then I'm good until September...amazing!

Things going well over here, still in the job hunt (just looking around, anyway). Going on three years now. :)

Hmmmm....

What Emily Means

E is for Edgy M is for Magical I is for Influential L is for Lucky Y is for Young

What Does Your Name Mean?

Well I agree with "lucky," especially given today's date!!!
I hope "M' and "I" are true. And I guess 25 is still young.
I am only edgy occasionally. :)

The Anniversary

At 8:45 this evening, it will be two years since we got "The Call" (check the archives--July last year--for more on this). And I can remember it like it happened two minutes ago.

I was so tired. I was actually trying to think of a better excuse than "I'm exhausted" to leave on my boss's voice mail. It was Sunday night and I was taking my pills, sitting on the old indigo couch in our family room. Mom was on the love seat and Dad was sitting against that, watching TV. Bryan and Mel were hanging out--they were on summer vacation. I had about three more pills to take. Mom and Dad had almost dragged me up to Easton that day, where I'd bought a new Coach bag (the only thing good, thus far, about that day) and I'd had a fish sandwich at Fado. Well, I'd tried to have a fish sandwich. I don't remember how well that went but probably not very. Dad had to drop us off and pick us up at every store, because I couldn't walk around the complex. In fact I didn't even really want to be there. But I was.

So it was Sunday night--"the beginning of another week," as they say on Pollyanna. My cell phone was, as usual, sitting on the end table by the remaining pills, mocking me. Not ringing. As usual.

So here I was, considering which pill to take next, and the phone rang.
I had caller ID on my cell, so when I saw Karen's name, I tried to keep my face neutral. But I knew what it was. Even though we were friends, she wasn't going to call on Sunday night just to chat.

And It Was. I had new lungs waiting for me, somewhere in Minnesota. The new lease on life had come. A day like today, struggling through heat, forcing myself to put one foot in front of the other, wouldn't happen again. Well, it would (as we did rehab) but it wouldn't be because my body was disappearing.

It was a long night. We left for Children's around 1 a.m., all of us piled in mom's silver Civic (dad was driving). The sky was cloudless, the stars brilliant. I didn't say a word.

Bryan and Mel slept on the couches in 4AE's multi-purpose room. I slept. The nurses didn't quite know what to do with me. :) Mom and Dad and I listened as Karen and Dr. A came in with updates. Fr. Mark, thanks be to God, came.

At 7 I was taken down to pre-op with my parents. Then I don't remember anything else.

An amazing, incredible day. My gratitude is simply overwhelming. I saw an organ donor plate yesterday that read "THNK YOU". Two words are so inadequate to express what the Gift of Life really means. But it's all we have.

And I have had two years with my family and friends. I have traveled to new cities and seen new things. I've joined new organizations, met new people, seen new babies be born and new marriages take place. I've watched my cousins and my godson grow up. And, of course, I've been reading.

If you're not an organ donor, think about it. Become one. Check out some of the links in the side bar, especially Lifeline's. Because you can save someone's life, and she will thank you forever.

Anniversary party!

The Second Annual Emily's tx anniversary party is tonight, so I am taking a break between making Large Quantities of Food for Hungry People. :) We're going mostly Mediterranean (Greek, actually) since it's so hot, and I've got two cakes that I, personally, am just ready to devour.

Pictures up later.

I cannot believe we're coming on on two years. Amazing.

Popcorn: Ratatouille!

My favorite Pixar movie ever!!! Not even kidding.

Remy the rat wants to be a chef. But, um, he's a rat. So he takes to living a secret life, cooking and watching Chef Gusteau's TV show in a nerby house, until the crazy woman who owns the house discovers Remy and his brother, Emilie, and shoots out her house (literally, she owns a shotgun, it's pretty funny), causing all the rats to escape. Remy gets seperated from his family and is guided by the ghost of Chef Gusteau to the chef's former restaurant, conveniently name d(what else?) Gusteau's. There, Remy saves new hire Linguine's job by fixing a soup he had destroyed. Well the soup is a hit, and the new head chef, who is a bit wacky and not a fan of Linguine, tells him to re-create it. Which, of course, he can't--at least not without Remy. Nicknaming him "little chef," they manage to re-create it, and Linguine moves from garbage boy to chef, working along side the lovely Colette, with whom, of course, he falls in love. And Linguine ends up not being who we all think he is...

It is a great movie if you like cooking and food, which, as we know, I do. The food is incredible to look at. Pixar's animation is, of course, impeccable, and the fur! Oh my gosh. There were moments where I could've sworn I was looking at photographs.

You might think with rats as the subject, there might be a tendency to go for the low humor. Not so. The garbarge shots are limited, and there is no "potty humor" in this movie, thank God. I would actually say this is a movie geared more for adults and older kids. I think little kids will enjoy the gags (there is plenty of visual humor), but really, the plot is more adult, and the setting is certainly more adult (a Parisian French restaurant). While we do see the rats in the Parisian sewers, we don't spend a lot of time there.

The soundtrack is incredible; I need to get it. I absolutely loved it. The cinematography is also great, with the street shots of Paris being very realistic and well thought-out. I want to go to Paris immediately. I also want to cook a nice big tray of Ratatouille! If I find a good recipe I'll post it.

Gee, can you tell I loved this thing? It was just awesome.

Oh, and the CI was great too!