New adventure

Sorry for the AWOL-ness this week--things have been...unsettled.
I missed my alarm TWICE this week, making me super-late for work. So on Thursday morning, when I actually got up at the appropriate time, I thought, today has to be better than the last two days. 
Eh...not so much.
If you've been reading this blog for the past month or so, you know my body's been doing it's "I hate you" dance, which drives me up a wall, especially when there seems to be no reason for this activity.
There might be a reason, after all. Found totally accidentially, during this ER run-in.
(read that, if you haven't, then come back, or the rest of this won't make sense. I'll wait.)

Weekend update (thus far)

ACCOMPLISHED:

**two loaves of brioche baked
**Cleaning (for the most part)
** A Pair of Blue Eyes finished (Bookshelf coming)
**One Rehearsal (ugh "Where Will You Stand?")
**Two movies watched ("The Dark Knight", "We Were Soliders")
**One Pitt victory accomplished
**16 bars of ballad selected for audition

STILL TO DO
**lunch with Karen
**Develop May/June '08 pictures
**copy audition music
**Rehearse Act II
**access port
**vacuum

GREAT!

Today was my three year clinic exam, which means the whole shebang of tests:

--Vitamin levels, in addition to regular blood draw;
--Chest X-rays;
--CT scan of chest;
--Annual bone density scan;
--VQ scan (which involves breathing and injecting radioactive material into me so they can see how that stuff is diffused in my lungs and chest--very fun);
--annual social work assessment;
--annual dietician assessment, and
--the PFTs

Good stuff all around...
I lost 5 pounds from the beginning of the month! Woohoo!
My PFTs were at 64%. I don't think I've ever blown that high post-tx and if I have, it was a long time ago, as Dr. A commented when he saw the results. So yay!
And I got to see all the lovely CF team people, including Dr. M, whom I haven't seen in quite a while. I showed them the J&H pics and generally caught up. It was great.

So it was a super-good, if very long, day. ..

If you do nothing else today

Watch this video.

I was just like those girls. There was a vest in my bedroom. I used oxygen at night before my transplant. And I wanted it so desperately when I finally realized that, without it, days were short and numbered.
If you haven't already, please become an organ donor. Ask your friends and family to do the same. And TELL your friends and family about your decision.
It was literally Hell--not being about walk 20 feet. Not being to climb steps. Not to be able to eat anything, or stay awake longer than 20 minutes. Brushing my teeth was the hardest thing in my day.

Think about that.

It's unacceptable for this to be happening. CF is the most common genetic disease in the United States. Let's work to reduce that statistic. Or, at least, make it so that it can be cured.
As we head toward my anniversary, I'll be posting more of my thoughts now that I'm three years out. But right now, I can say, with total certainty, that this life is the best I could imagine. Tonight I'm going to a rehearsal where I will sing and dance and move about the stage with 60 other "normal" people. I don't think anyone on the cast or crew knows, except my friend Jaylene who was in high school choir with me, and maybe some of the Cap kids. I kept it such a closely guarded secret.
When I hit that stage next Friday, it will be because a woman in Minnesota--Suzanne--decided to donate her organs. Without her, there would be no me.

It's a sobering thought. Help spread the word--volunteer, donate, or just tell people to read this, or other CF blogs, like Nate and Tricia's. I can't really ask you enough to do these things.

I am privileged. 19 people will die today because they didn't get their organs. I have heard stories about CF kids who died in high school, in college, much, much too young. I know too many wonderful CF patients. And some of those wonderful kids will be one of those 19 people.

Heigh ho, heigh ho...

It's off to the oral surgeon I go! Because apparently I'll need a skin graft on one of my lower incisors due to all the lovely inhaled medications I've consumed over the years.

And...it's my parents' 29th wedding anniversary!!!

Mother's Day

I read a stat the other day. It said that stay at home moms would be worth approximately $117,000 if they were paid according to market demand.

I think my mom would be worth more than that.

Not just because she's my mom, but with me as her kid, you'd have to tack on a nurse's salary, too, which would put her earning power at more than $200,000, probably (beating my dad--sorry dad!).

My parents have split the Emily duties--Dad usually does the ER runs, the surgery runs, the let's go out of town and visit doctors who know nothing runs. He also Handles the Insurance Company (that's a biggie). Mom does the day to day Children's stuff, the meds, makes appointments, takes me to appointments, and does fun stuff like wash my hair, flush my port, change burn dressings, etc., etc., etc. That's a lot of work. Trust me. And we've had to be fairly inventive as the years have gone on. Washing hair with a PICC, for example, is different than washing hair with an accessed port.

Somehow in the midst of all this fun, Bryan and Mel also got raised and fed and taken to soccer, football, marching band, tennis, etc., etc., etc. I had voice lessons and dance classes and choir rehearsals. Meals got made and Christmas presents bought (Mom is, without a doubt, the Champion Christmas Shopper of the World. She is just awesome.). School projects got done, including counting pieces of litter in Blacklick Woods for a 5th grade "cluster" project. We went prom dress shopping and headed to hair appointments.

When people talk about "working mothers," they're usually leaving my mom, and all the other Stay and Home Moms, out. This irritates me. My mom certainly works, and works hard!! She's worked the equivalent of two jobs for, oh, 26 years now. That's not easy. And there's no paycheck, no reward banquets, no bonuses, not even cool lunches at fancy places with The Boss. If Mom had worked at a "real" job, then I have no idea what would've happened to me (or the rest of us). Part of successful CF and post-tx care is having a strong support system. In the weeks after tx, we were at The Resort almost every day. I couldn't drive for three months, and Dad had to work. What were we supposed to do? So mom took me and hung out in waiting rooms while I did PT and OT and all that good stuff. It takes time to learn to change dressings, access ports, and make sure all the meds are going right. I was sort of half there, what with all my drug interactions and such. Someone needed to take charge. And that was mom.

I would put up a pic of mom, but she's picky about that, so I'll just say we look alike. :) That should give you an idea.
Happy Mother's Day!

Call Congress

I take steroids. And yes, I can tell when baseball players lie about taking steroids, because you can clearly see they have "moonface" (Steroid related swelling, which so far I have managed to avoid, unless Dr. A really ramps them up, as he likes to do on rare occasion).

However, I have not yet developed Phenomenal Skills with any sort of Sporting Equipment. But that doesn't mean that I haven't enjoyed other particularly wonderful side effects.

Most of really unpleasant ones--losing or growing excess hair, for example--I have not had to deal with. Thank God. And I am actually on a fairly low maintenance dose of 10 mg/day. And it does make my joints super-happy. Pre-transplant, my joints were Highly Cranky all the time. (I was totally perturbed when Vioxx went off the market. That was a Miracle Drug. I would have gladly dealt with potential cardiac complications 30 years from now if I could take the Blessed Yellow Pill that got me through today.) So there is something good about it. But they do make one area of life sadly complicated.

This is Shopping For Clothes. Now, while my face is normal size (I think), my stomach is not. Weight gain there is especially prominent when you take steroids, and it's sort of out-of-proportion with the rest of your body. Some girls can look like they are six or seven months pregnant while taking these.

So shopping for jeans, skirts, hose, etc. becomes very interesting. You can get things over your hips, but they don't buckle/zipper/close in any way. I actually look at hose sizes now, and wonder, Hmmm, do I go by what my crazy stomach's size is, or the size of my legs? Do I want them to be too big or too small?

With jeans, if it fits the waist, the butt is huge. So I feel like I am swimming in my jeans.

Yes, I am glad I weight more than the 85 pounds I clocked in at pre-transplant. But geez, I do miss having a proportinate body.

ARGH!!!

Mike Huckabee is really, really naive about our health care system.

I"m watching the GOP debate (well, was; now it's Steeler playoff time!) and the last topic before the commercial break was about health care, which I'm just a tiny bity interested in.

Mike Huckabee gave some of the worst answers I have EVER HEARD. First, he says that 80% of health care costs in America are caused by chronic illness, so we should do things to "prevent" these illness.

Well, OK.For things like type II diabetes, what are you going to do? Eliminate all McDonald's? Have exercise squads policing our physical activity? Exactly how are we going to enforce these things?

Second of all, things like CF and MS come under this 80% umbrella. So short of killing people, we can't prevent these, Mike. Sorry. (I bet Ann Romney just LOVED Huckabee's answers throughout this.)

Then he says we need to have a health care system that "prevents visits to the hospital." OK, again, nice idea. But what about those of us who, um, need hospitals? Who sort of live there, but not by our own volition?

I know that there's some substance to what he says (that yes, many of our health care problems,--obesity, etc.--come about by personal choices). But really, everything with cancer or CF or MS or anything genetic, etc. gets ignored by Huckabee. It's classical Protestant "The Lord helps those who help themselves" stuff.

And we all know what I think about that.

My boy Mitt did better. Talked about MA's plan, where you can buy private health insurance. Deductibles went from $300 to $180 a month. If you don't want to buy in, you don't have to. But then you're paying if you get sick.

Oh, and drug companies aren't the devil. Thanks for that, Mitt. :)

Vive la France!

They are on the anti-rejection case:

French scientists develop new strategy to stop transplant rejection

[Date: 2008-01-04]

French researchers have developed a new therapy which successfully prevents transplant rejection while avoiding many of the side effects of the drugs currently given to transplant patients.

The results, carried out by a team led by Joost van Meerwijk of the French National Institute for Health and Medical Research (INSERM) are published in the journal Nature Medicine.

Controlling the body's extremely strong immune reaction to transplanted organs remains a major challenge for modern medicine. Immunosuppressant drugs have improved survival in the first year after transplant by effectively preventing acute rejection of the new organ. However, they are less effective at preventing chronic rejection which arises much later and affects a significant number of transplant patients. Furthermore, as immunosuppressants block the entire immune system, patients taking them are particularly prone to opportunistic infections and the development of certain cancers.

In healthy people, special cells called regulatory T lymphocytes (Tregs) ensure that the body's immune system does not turn against itself. For a number of years, Professor Van Meerwijk and his colleagues have been investigating ways of taking advantage of this regulatory role of Tregs in transplant medicine.

In 2004, they showed that regulatory T lymphocytes effectively inhibited the rejection of a bone marrow transplant in mice. However, until now they have proven less effective at preventing the rejection of skin and heart transplants. Undeterred, the researchers designed a new experiment based on the fact that a bone marrow transplant makes subsequent organ transplants easier.

The first step of the newly designed protocol involved placing regulatory T lymphocytes in a culture with cells from the organ donor. Over a two week period, the T cells effectively 'learnt' to recognise the organ which was to be transplanted.

The scientists then carried out a double transplant on the recipient mouse, involving both bone marrow and an organ (either skin or heart). At the same time, the mice received an injection of Tregs from the culture.

The experiment was a success, with neither acute nor chronic rejection of either transplant taking place. 'In conclusion, we have demonstrated that adequately prestimulated Tregs can be used to protect skin and cardiac allografts from acute and chronic rejection,' the scientists write.

'This cellular therapy has two major advantages: an effective prevention of chronic rejection and a specificity of immunosuppression towards the transplanted organ, thereby avoiding a large number of undesirable side effects,' commented Professor Van Meerwijk.

The next step is to find out if the same procedure could be as effective in humans. The researchers note that the induction of tolerance to organs or tissues should be feasible using their protocol or a modified version of it. Furthermore, with some adjustments it could also be used to induce tolerance to transplants taken from dead organ donors.

For more information, please visit:
http://www.nature.com/naturemedicine
http://www.inserm.fr

"Don't call me at 3 AM"

OK so I'll blog instead...
Not much going on. Can't sleep so I thought I'd blog...
Nauseous a bit so I got a zofran dose around 2. At 6 I'm due for my next percocet.
Wonder if I should just stay awake for that.
Quiet on the floor, lots of babies, apparently, that need fed on schedule so they keep their weight up. It's amazing how much emphasis is always put on weight GAIN in a hospital. The idea of losing weight it really a foreign concept, at least on the floor I tend to hang out on.
CAught up on some email...even at 3:30 I'm thinking about work. Think that's a sign of something bad? If I had my journal I'd be writing in that, but all I've got it this.
Elizabeth is my nurse tonight and she is awesome. I think she's about my age, which is fun. I have come to the conclusion that nurses know more than doctors about 90% of the time. At least.
Oh! And today is Amber's TWO YEAR ANNIVERSARY!!!! :-D

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 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."



--------------------------------------------------------------------------------


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.

For mother's day

Great story from Human Events:

For Mother�s Day - A Mother�s Determination
by Tom Purcell (more by this author)
Posted 05/09/2007 ET
Updated 05/09/2007 ET

It was 1994. She thought she’d heard a faint wheezing in her baby’s lungs. She took her baby to the doctor right away, who sent her to a specialist.

The doctor said it was nothing -- probably a touch of acid reflux. He said it was common for new mothers to overreact. He said he’d run some tests to be safe.

Later that night, she was preparing for bed. The phone rang. It was the doctor. Her daughter tested positive for Cystic Fibrosis.

The doctor warned her not to panic. The tests could be wrong – he’d run them again the following day. He warned her to avoid reading about the illness until it was confirmed.

But she couldn’t wait. She threw a rain coat over her pajamas, grabbed her sleeping baby out of her crib, then rushed out to a late-night book store. As she cradled her baby in her arms, she read everything she could about CF.

It is an hereditary disease that causes a child’s lungs, intestines and pancreas to become clogged with thick mucus. It is fatal. She’d be lucky if her daughter survived into her 20’s.

She broke down in the book store. She slid to the floor, crying uncontrollably as she held her baby tightly. She cried as though her baby had already been taken away.

The doctor confirmed the lab results. The pain was unbearable. She and her husband did not know what to do.

She reached out to a friend. Luckily, her friend knew plenty about CF. She knew former NFL star Boomer Esiason and his wife Cheryl. They have a son with CF. They’ve done extensive fundraising for the Cystic Fibrosis Foundation, and now head their own foundation.

The Esiasons contacted her right away. They understood her pain well and consoled her. They shared everything they knew about the illness.

She was instantly transformed. She began channeling her pain into mastering CF. She learned how to apply medications and treatments to give her daughter the best hope.

She learned of CF’s other challenges, too. Though there are 30,000 Americans who suffer from the illness, the number is too small to spur drug companies to do research. The CF market cannot generate enough revenue to recoup the millions needed to develop new drugs.

So she took the bull by the horns. She quit her job and jumped into the CF fundraising business full time. She joined boards and chairs events. She gives speeches wherever she can.

The money she raises goes to the Cystic Fibrosis Foundation. It hires its own scientists to advance its own medical breakthroughs (90 percent of the funds raised go directly to research). Thanks to so many just like her, the average lifespan of a child born with CF has jumped to 36.5 years.

But that isn’t good enough for her. In 1998, her second daughter was born with CF. There was only a 25 percent chance that she and her husband, both CF carriers, would have another CF child, but fate struck again. They felt unbearable pain again.

Every day is a battle for her now. Every day, her girls must take a collective 34 pills and an array of oral medicines. They must complete 10 breathing treatments and six 30-minute therapy sessions. The treatments and medicines are designed to extend their lives.

Every day, she works tirelessly to raise money to advance any technique or medicine that might extend a CF child’s life a little longer -- that might, if promising new research goes as hoped, cure this dreaded disease.

Hers is the story of a mother’s love -- a mother’s powerful determination to breathe life into thousands of children.

Her name is Angela Kinney and she could use a little help. She’ll be participating in the Great Strides walk in Pittsburgh on May 20th (an event that is held throughout May in cities across America). To contribute to her efforts go to www.cff.org/great_strides/angiekinney or contact her directly at angiekinney@comcast.net.

You might want to wish her a Happy Mother’s Day while you’re at it. She’s certainly earned it.

The OSU experience

OK, so we weren't able to actually do the tests, but the people were really nice, which is a plus. Here's how it went:

Got there around 10:30, our appointment being at 10:45. We went to the Ross Heart Hospital, checked in w/ the outpatient (or "ambulatory") office (like a little cubicle), and then the receptionist took us down the hall to the Cardiac Lab. I was taken promptly (after having to fill out one of those god-awful forms with NEVER enough room for all my drugs). The techs had to put in a peripheral, which only took 2 tries, amazingly. One of the techs said they get a lot of cancer patients whose veins are shot from chemo, so they're good about getting the hard sticks, of which I definitely qualify.

Through the IV was injected some sort of radioactive material that would go to my heart so it would show up on X-rays and what not so they could get a nice look at the muscle itself and vein structure. I had to wait 45 minutes to an hour so it would absorb. And I had to drink a ton of water, like 2 1/2 bottles, in that time frame.


Now for most people I imagine this wouldn't be a problem (except for the bathroom thing). Well it is for me. I cannot drink a lot of water on an empty stomach. For some reason, it makes me nauseous, and it's also why I can't take pills w/ plain water (chalky ones, I mean. Capsules are fine.). So as I frantically tried to drink all this water (I did get about one bottle down), I was starting to feel nauseous. Plus my blood sugar was probably all out of whack since I'd been NPO for about 14 hours now.

When I went back for the heart scan (like the one chest scan that measures gas diffusion in your chest, but I forget what it's called now), I was nauseous, so the woman brought in a bag (they use bags and not basins. Those actually kind of work better.). I almost made it through the test...three minutes left, and all that water (plus bile) came back up. And since i was lying flat, it was an interesting process. So we have to do the test again, but there was no way it was getting done that day, because until I ate something substantial I would just throw up again. My blood sugar was 84, so yeah, it was low. The test is now rescheduled for next Thursday in the AM, so hopefully we can avoid the nausea problem. I hope so.

The place is HUGE. All the different hospitals seem like they're interconnected, and there are a lot of good signs, but it's still huge. And you've got the two extremes--the power walkers and the slooooooowwwwww people. There's almost never anyone in the middle.

Overall, not a bad experience at an "adult" hospital. Part II next week!!

Homeward bound...

Getting out of here probably around 4 after my last (well, in-house) vanco IV infusion. I will be going home on that (it's every 12 hours-Q12- which isn't bad, but it's two hours. Which is bad. Oh well we'll figure out something...), plus TOBI aerosol and levoquin oral med. Not too bad if you think about it. Not that i wouldn't love to not have the port accessed but at least today I got to take a bath and wash the skin around the port AND MY HAIR so that's good. And I am dressed and wearing make-up; these are all large accomplishments!

All in all I feel pretty good, which is a great thing after feeling like crap for so long, as we know. I am excited to get back to real world and hit Barnes and Noble for some book purchasing since I am behind. And get Peter Pan on DVD because I just love that movie.

And happy happys to: Branden, whose 25th birthday was yesterday, and Andrea, who turns 24 today!!

Real food!

OK, really not real food. Jello. Broth. Juice. And usually all the same color...well, except for the broth, which has about a 10 minute lifespan of goodness before it's just not even worth eating. Oh well. Dad and Mom were very cruel and brought in Chipotle and Panera and ate it in front of me. This, as we know, is wrong and violats one of Emily's Hospital Rules. But oh well. Dad did try to make up for it by brining me chips that I may be able to eat tomorrow. May. We'll have to see what the numbers and Dr. A say, but if I can keep down these delectable meals then I should be able to try something actually worth eating, eh? That's what I thought. And I am so hungry. I've been planning menus for the game night party that I'm having soon and thinking about my birthday dinners (one with family, one with friends) and getting very hungry doing that. VERY hungry. So maybe I should stop. Oh well.
I am also off the constant fluids and we're going to sloooowly try to get oral meds back in the picture. Woohoo!

We're home

OK I'm home. Why am I using the royal We? I am, most definitely, not royal. Of course yesterday had to be the latest discharge on record, since we got out at 7:00 PM, but I think one of the babies on the floor was having issues, and the kid in the room next to me was definitely having issues that involved a lot of banging and quite possibly yelling. Whatever. Just glad I wasn't in that room.

Gotta love it when doctors take away psychiatric drugs and DON'T TELL YOU. I was on celexa post-tx, because I have a tendency to get waaay too worried about things I can't control and generally drive myself insane. Before the celexa I was on something else since I was about 16. So that's like almost 10 years of solid meds and then they're gone b/c they interact with the Mighty Antibiotic I'm on right now. Which I understand, but dude, tell me and give me something else! No wonder all the nurses thought all the chest pain I was having was anxiety-related. Sheesh. Here's a tip: don't just stuff a girl with adivan, give her something else, please. Thank you.

My stomach, in general, hates me. The idea that it and I have to co-exist has never really hit home with it. So I just try to do whatever it's currently telling me to do. Which isn't always a good idea. Oh well.

No work, absolutely, by order of High Command, until at least next week. Taht's OK with me. March, Spring, and Branden's 25th birthday!! Yay!!

Hopefully I'll be feeling OK by the weekend so I can maybe go to the opera. We'll see. But glad to be home.

Random things I learned

Before I went back to work, though, I should probably share some random (warning, some of these could be graphic/gross, whatever, so proceed with caution) things I learned during the whole CF/TX experience (and I am still learning!):

--When they say "NPO" (nil per oral, Latin for nothing by mouth), they mean it. That means no water. So drink/eat up before the deadline, even if you don't feel like it, because trust me, you will in the a.m., especially if the procedure/operation isn't scheduled until like 2:00 pm. Or else you have to implement Emily's Law of Eating: NO EATING IN FRONT OF THE NPO GIRL. It is carved in stone. I have banished my parents from my "resort" room for this. Course dad has qualms about eating in front of me anyway...

--If you've been chroncially nauseous, keep plastic bags in your car. Know the locations of the nearest bathrooms in all movie theaters, shopping complexes, churches, etc. If anyone would like to know precisely where the bathrooms are at Easton, I'm your girl. If all else fails, locate trash cans, even though vomiting in public is not something I recommend. But I have done it. (Dad calls them my "exorcist" moments.)

--Barium's not that bad, especially if flavored with Quick. Just drink it fast, or "down it" as my mother says, and don't think about it.

--You will always wait forever in a lab. And radiology. It's a Law.

--Always bring a book. it's the times you don't have a book that you wait forever. And if for some reason the book doesn't work as a charm against waiting forever, at least you were prepared.

--It is usually cold in hospitals. bring a sweater or a jacket.

--ERs take forever. Always. And if things are moving fast it's usually not good.

-- Don't be afraid to ask for pain meds!! They have them!

--Anti-nausea drugs are God's gift to mankind

--Have one good pair of hospital PJs, like a t-shirt and pants, that come off easily, move with you, and cover all your vital parts. Also no long-sleeved things since they interfere with IVs and food. Victoria's secret Pink t-shirts (for girls) are a good choice because they are soft and move to adapt w/ various IVs and such. I wore a lot of their stuff after transplant.

--Get some fuzzy sock at Target or whatever to wear around. Those hospital socks get gross pretty quickly.

--hospital food is not that bad but make sure you know where the good vending machines are.

--if you're nice to nurses, they are nice to you

--There are always infomercials on at 2 am, which you will find fascinating if you can't sleep.

--Arterial blood gases are the devil!

--Sleeping in a hospital is a hit or miss proposition.

--DO WHAT YOUR DOCTOR TELLS YOU

--TAKE YOUR MEDS ON SCHEDULE!!!