Saturday, December 30, 2006


is the end of the two-a-day aerosol drugs!! Woohoo!!! :-D I can totally deal with doing it once a day, but the twice a day was killing me. :)

I will have pics up from the Christmas festivities soon...they're coming, but now that I'm back home and with slooow dial-up it may be awhile...

Friday, December 29, 2006


OK, wow, lots going on and I'm feeling like I'm never going to get back to work! Sheesh!

So on Wednesday (yes, two days after Christmas and the first day of our family reunion), Dad and I trekked to Children's at 7:30 to do labs, CXR, the usual. Labs--OK, CXR--good, PFTs--getting better, especially the DLCO, which is good. We had finished the IV drugs on Christmas day and we didn't restart those, oh the joy! So Dr. A listens to me, still hears a few things in there, and orders a CT scan. CT scan OK, BUT he wants to see me on Tuesday (the day I was going back to work, Opening Day for the 127th, a big day and I need to be there!), for a regular appointment which may include: 1) a two-hour steriod infusion (grr) OR 2) a bronch (DOUBLE GRR). If it's a bronch, that means I'm out for the whole day and possibly Wednesday. Needless to say these developments do not make me happy. At All. What a way to start the new year...I just want to go back to work!!!

Monday, December 25, 2006

Merry Christmas!

Merry Christmas, everyone! It's my second post-tx Christmas, and they get better and better, let me tell you, even though we're wrestling w/ the crazy port and the inhaled's still Christmas and it's still fun!

Some pics for you:

The Gang at Branden's Christmas Party
Back: Sean, Troy, Tom, Derek
Middle: Christine, me, Tiff, Gary, Branden
Front: Sarah, Lindsay J., Lindsay S., Andrea

Richelle and I at Brio

Alex and I at the Brio party

Sunday, December 24, 2006

Merry Christmas!

Merry Christmas, y'all!!
I will be busy prepping for Mass and all that good the catholic girl blog to find out more. :)
Enjoy!! :) Eat too much, sleep too much and open waaay too many presents. That is the plan. :)

Friday, December 22, 2006


Slept all night. That's exciting. :)

Thursday, December 21, 2006

Antoher visit to Shangri-la...

Oh what joy was mine this morning to wake up at 5:45, to rain and dark, and to drive to Children's in the rain! Woohoo! My appointment wasn't until 7:30, but we were there at 7:00, whereas Infusion Clinic (where I get blood drawn) didn't open until 7:20. So the joy. Valerie was my nurse today, and we did the normal blood draws, which took us to about 7:45, then Mom did the 8 AM meds and I took my 8 am prograf. That's when Polly, Dr. A's AA, found us, and chatted with us for awhile, since we didn't have anywhere else to go and the clinic was empty. She is awesome. :) After we were done she took mom over to the office for a "tour" while I did PFTs with Kathy and Marita in the pulmonary lab. The numbers are up very, very slightly--like one point each--but the DLCO (the test that measures gas diffusions) was a lot better than Monday. The test that measures another type of chemical, and thus lung inflammation, was also up slightly, to 8.8., but as long as it's under 30 we're all happy. :)

Five of us transplant kids were there today, so it was a bit of a madhouse, since Dr. A wanted to see us before Christmas. So it was a looong wait. Our appointment was at 9:00, and Julie had seen us by then to do the normal run-down of drugs and symptoms. I mentioned that I was still having shaky days, and she said that was probably a combination of the increased Vfend (an antibiotic no one has ever heard of, but I'm on sort of permanently) dose, which messes with the tac drug level, so it can make you shaky. I think it might also have to do with some of the BSL issues we've been having, but that's just me. I've also been having trouble sleeping and some general achiness, but they're not too worried about that.

Finally, at like 10 something, Dr. A came in and we went over the chart and such. He is still hearing "crackles" in the bases, but my cough has gotten a lot better and my PFTs are sloooooowly coming up. He says it's just taking awhile for me to get better. We're still doing the IVs through Christmas morning and the twice a day inhaled drug through Saturday, and then we'll switch to once a day. We also messed with the tac dose again. Then he wanted a CXR, so we had to do that and then wait for him to look at it before we could go. All in all, we left Children's around noon. Not the way I wanted to spend 6 hours of my day, but whatever.

Other than that, things are going OK. I was able to baby-sit tonight which was a lot of fun and I'm going out to lunch with them tomorrow, as well as attending Branden's annual Christmas shindig. I will post pictures when I get a chance.

Tuesday, December 19, 2006

Should we pay donors?

From a link on the Corner....

Need transplant donors? Pay them

By Virginia Postrel

June 10, 2006

When Kaiser Permanente forced kidney patients to transfer from the UC Davis and UC San Francisco transplant centers to its own fledgling program, it shortened their lives -- and created a scandal.

But the Kaiser story represents much more than a single health maintenance organization's bad decisions. It reveals a fundamentally broken transplant system, a system that spends its time coping with an ever-growing, life-threatening organ shortage rather than finding ways to reduce or end it.

More than 66,000 Americans are languishing on the national waiting list for kidneys -- 10 times the number of kidneys transplanted from deceased donors each year. And the list keeps growing, with a queue of more than 100,000 expected by 2010.

Kidney patients literally live or die by where they are on the waiting list. While getting progressively sicker, they must spend several hours at least three times a week hooked up to a dialysis machine, the kidney-disease equivalent of an iron lung (it prolongs your life but imposes a physically debilitating prison sentence).

Increasing the supply of deceased donors, while desirable, is difficult -- organ donors have to die healthy and in exactly the right circumstances. But even if every eligible cadaver were harvested, it wouldn't fill the gap. We need more kidney donors, lots more. And they need to be alive.

Unfortunately, our laws and culture discourage healthy people from donating organs, as I learned this spring when I gave a kidney to a friend.

My parents were appalled. My doctor told me, "You know you can change your mind." Many people couldn't understand why I didn't at least wait until my friend had been on dialysis for a while.

This pervasive attitude not only pressures donors to back out, it shapes policies that deter them. Some transplant centers require intrusive, demeaning psychological probes that scare people off. Some bioethicists suspect that donors suffer from a mental disorder, as opposed to being motivated by benevolence or religious conviction.

The scrutiny is particularly nasty when healthy people want to give their organs to strangers -- not truly unknown people, mind you, but patients they have gotten to know through Internet sites or press coverage.

Many transplant centers flatly refuse "directed donations" to specific strangers. Some argue that it's "unfair" for patients to jump the queue with personal initiative and an appealing story; others insist that such donors aren't to be trusted (they must be either criminal or crazy). Posters at warn givers to never even mention the Internet, lest their good intentions be thwarted.

Sandra Grijalva, a San Francisco woman with polycystic kidney disease, asked Kaiser officials if she could find a donor online -- after having one of her friends disqualified because of high blood pressure. "They said absolutely not," she says. The donor, Kaiser maintained, might someday try to extort money. (So might your cousin, but at least you'd be alive.)

Instead of dire possibilities, consider a cold reality: Without tens of thousands of new living donors, most of the people on that very long waiting list are going to suffer and die on dialysis. The transplant community's top priority should be increasing the supply of willing donors.

The most obvious way to increase the supply of any scarce commodity -- paying more for it -- is illegal. Federal law blocks transplant centers, patients and insurers from compensating donors in an above-board process, with full legal and medical protections. The growing and inevitable "transplant tourism" industry, and even shadier organ brokers, are the kidney equivalents of back-alley abortionists.

Legalized financial incentives would encourage more people to volunteer their organs. Donors would probably still be relatively rare, just as surrogate mothers are. Many, like me, would still help out without payment, just as some people get paid for giving blood or fighting fires while others do it for free.

Paying donors need not hurt the poor, any more than paying dialysis centers does. Compensation could, in fact, help low-income Americans, who are disproportionately likely to suffer from kidney disease. A one-year tax holiday for donors would nudge rich people to help. A pool to make up for lost wages (legal, but rare today) would enable many otherwise willing friends and relatives to contribute.

But even talking about incentives is taboo to some self-styled patient advocates. On Monday, the American Enterprise Institute will hold a conference in Washington on incentive-based transplant reforms. (It's organized by my kidney recipient, a physician and health-policy scholar at the institute.) When the National Kidney Foundation heard about the conference, its chief executive, John Davis, complained to the institute's president, "We don't see how an AEI forum would contribute substantively to debate on this issue."

Davis' group adamantly opposes donor compensation, lobbying against even experimental programs and small tax credits. It's as though the National Parkinson Foundation opposed stem cell research, or thought researchers should work for free.

Even a limited market in kidneys would transfer power from the rationing establishment to kidney patients and supportive communities. It would give patients more options. Grijalva, who works with developmentally disabled seniors, would welcome the shift.

"My biggest fear and my biggest feeling," she says, "is that I'm totally out of control, that these people have the control and they are making all the decisions, and I have absolutely no input whatsoever."

Virginia Postrel is a contributing editor to the Atlantic and the author of The Future and Its Enemies and The Substance of Style.

Monday, December 18, 2006

Follow up report

Had a lovely time visiting Dr. A and crew this morning--blood, CXR, PFTs, the normal. Things are stable, but not improving (well, in a statistically significant way, anyway), and Dr. A said that it might take 1-2 weeks for things to get better. Which means I have to "slow down cowgirl" and not be running all over the place. Sigh. So no work for me, which is kind of killing me because mentally, I'm good. I just get short of breath and tired and with the messing with the steriods my bones/joints are being cranky, too. So physically it's probably a good thing I'm not at work. Besides the fact that I'm still slightly "puffy" (oh I am so hoping that's what it is, anyway, I am trying so hard to be good), so I don't look my usual awesome self. :) I go back on Thursday for another follow-up, the pre-Christmas tune-up :), so we'll see what happens then. We did add flovent (inhaled steriod) to the drug regimen, so we'll see if that helps. Fortunately the Thursday visit is just a clinic appt. so no blood or CXR, which means I can sleep a little longer. :) Of course, all of this might also delay my surgery which was scheduled for 1/17, so who knows? Not that I mind. I want to get all this straightened out before we start poking around in my head, and I know Dr. A is on board with that.

A note: as we were sitting in the Infusion clinic and mom was pushing the IV med, she says, "well, in a week we'll be opening presents." And I'll be done with the IV course--yay! So I'm looking forward to Christmas morning...which is less than a week away!

Sunday, December 17, 2006

Beauty and the Port

I gotta say, the port is great for a lot of things. But one thing that has always been a challenge is keeping up w/ my hygenie regimine when on home IVs. The problem is, port, peripheral, PICC, whatever, you can't get the IV site wet. That's bad. So over the years we've evolved...with the PICCs or whatever, you can just wrap the arm in saran wrap, throw it out of the tub and basically take a normal bath. Can't do that with ports due to their placement, so it ends up being this two step process-first hair, then the body. Once a week, when the needle is changed, you can have a glorious bath/shower and try to take care of everyhthing at one...which is what I did yesterday. Shaving, exfoliating, the whole nine yards.

The hair is really the problem. I can take a bath just by sitting in the water and washing up, no problem. But the hair is just ridiculous. When you try to wash it quickly it looks awful and only lasts a few days before it looks yucky. The other thing is you try to get all your "errands" out of the way when you have good hair because that doesn't last very long, especially since my hair is fine and tends to look pooey after a few days, anyway. It needs constant love. Which I don't like to do, because i'm not a hair girl. And my family really does not love washing my hair, let me tell you. Mom has threatened to shave my head on more than one occasion because it 's just such a hassle.

Anyone have any ideas on how to keep hair nice? Last night I slept with it in a low bun, which worked, but my head hurt. Not a good trade-off. The things we do to look good, eh?

Saturday, December 16, 2006

And this...

You Are an Excellent Cook

You're a top cook, but you weren't born that way. It's taken a lot of practice, a lot of experimenting, and a lot of learning.

It's likely that you have what it takes to be a top chef, should you have the desire...

Didn't we already know this???

You Are a Bow

You don't think of it as the holiday season - you think of it as the present season!

Back home

Well finally back home, dishcarged late always! We had some problems with the port last night. I have a "floater" kind of port, which means that it likes to move around and not stay still, so once it's accessed it can move around and make pushing the meds in tricky. The meds went in OK (veeeeerrrryyy slowly) so we have to re-access today but everything's fine now. I actually took a real bath this morning, with exfoliating and shaving and all that good stuff so I feel like a real human being again. :) Also grabbed some things from my apartment so I can hang out here until Christmas.

Nothing much to report...feeling OK. The Vfend has been doubled so I think that's making me kind of spacy. It can also make you dizzy so I'm not going to try to drive until the spaciness clears up somewhat. On the plus side, my brother got me The Devil Wears Prada for my Christmas gift, so I can watch that! I can also catch up on some reading...

Friday, December 15, 2006

Now I'm really getting sprung!

OK so now I'm really getting sprung! We thought it was going to be yesterday, but with the abdominal pain and such, we found a spot of fluid on the L side that we wanted another look at today. But everything looks good and the PFTs to 65%, so that is good! We did an abdominal ultrasound series this morning but I think everything was OK on that. So I will be going home later, provided everything looks good, and will be on the levaquin (oral) and the IV med until Christmas Day, which isn't to bad. At least it'll be done before the family reunion on the 27th! (and when David gets here!)
I will be at my parents' for awhile...I think tonight's plan is to go get some new DVDs with the Wal-Mart gift card I got here last night ($50!!) and hang out at home. maybe Tiff/Branden will come over...who knows? I could certainly use the company!!

Wednesday, December 13, 2006

Gettin' sprung

I am outta here tomorrow, with only one home IV to do every 8 hours, so not so bad! The plan, I think, is to stop onC hristmas Day, which is OK. We can handle that. So wahoo! I should be getting out of here between 11-1 p.m., so that's happy, and I;ll be at my parents' house while we're doing the IV stuff. Still don't know about work; if it's every 8 hours, plus the high BSL side effects, work might not be happening since I've been wanting to sleep off a lot of these headaches lately. But we'll see. I probably won't go in next week, for sure, and then the week after...who knows? Everyone will be here for Christmas then...

I'm not dead yet!

As they sing in "Spamalot", but if you were listening to my psychotic pulse ox monitor, you would think I was!
For the unitiated--the pulse ox monitor measures how much oxygen is in my blood and my heart rate. The O2 levels have been OK (97-100), but the heart rate monitor seems to tihnk I'm either braycardic (like with 30 bpm on my heart) or it's 160 beats per minute. Either of which, I'd be pretty aware of because I'd probably be passed out and not typing to you people! Gotta love medical equipment...
BSL are OK, still in the mid-300s, which are high but not as high as they've been. As we taper off on the steriods we should get them under better control.
Had my first visitors--Missy and her son, Nathan, who is an adorable first grader as SPX> He and his older sister, Sarah, have atypical CF so they're here a lot. He had a visit with the cardiologist (everything's good, yeah!) so they stopped up here for a bit afterwards, bearing a balloon that Nathan picked, Chocolate covered pretzels (yummy! I can have those but not fruit...who knew?) and a notepad. Nathan is an adoraable kid--he wants a drum set for Christmas. What fun for the family, eh? :)

Wednesday AM update

Still here...but might be getting out today or tomorrow! Tomorrow is probably more likely, though. Dr. Astor is back in town today so he will look at what we've been doing and go from there...I think I am down to two (or three) steriod treatments, which is good, but I'm still on at least 1 IV antibiotic, plus the levoquin. The cultures are still looking good, so no rejection and it's not a virus. Yay! The bloog sugar levels are still all out of whack, though, so we're trying to get those back down. I really, really want some fruit but can't have any because that would just send the sugar levels through the roof, so I'm drinking lots of water and diet soda. It's hot in here and I;m trying to stay cool. I;m also desperate to wash my hair but since I've got the port hooked up that could be tricky, plus I've got a headache (probably from the high BS levels) so I don't think I could handle washing my own very, very long hair right now (which is getting cut ASAP once I'm out of this joint.).
Reading Jane Eyre which I read back in h.s. for AP English but I'm liking it better this time around. Also having lots of fun shopping on Amazon and making up a list...hey, I've got to milk this for something right?
Only two more weeks until I see David...yay!
OK all for now, lunch should be coming soon. Oh the joy!!

Tuesday, December 12, 2006

Tuesday update

Forgive the typing I've got a SAT monitor attached to my right hand, so there will be typos, probably...

We;re messing with insulin doses since I'm on so many steriods, and we're trying to get the numbers down from 330, where they are now they were 370 something earlier, which is really high for me. The highest I've ever been before was 300, and that was definitely an outlier in my data. Other than that, we're still doing levoquin by mouth and valcyte (I think?) IV, plus the steriods IV. I still don't know if I;lll ggo home on IV meds, which wouldn't be too bad, but I;d like to be done by Christmas because who wants to be pushing drugs over Christmas? Not me, that's for sure. Especially since I'd liek to be able to take regular baths and such, which is hard when accessed. It's a lot nicer with a port since mom knows how to access it, so we can undo it when we want, but we still can't be undoing it every day since there's only a limited number of times you can access the port site before you need to replace the whole thing. Granted, it's alike a couple 1,000 times or something, but still. We'll cross that bridget when we get to it, though, I;m not going to worry about it now.

Everything else going rpetty well. The cough is a lot better, and so is the chest pain. I;m still pretty short of breath even thoguh I went around the hospital with my parents today (well to the gift shop and the cafeteria, but still that's 'around', technically.)

Cultures looking good so far no sign of rejection, hurrah! So that's it for now, we should know some more in the AM after Dr. Shell, David (the new fellow), Dr. Patel and Julie have powwowed. The biggest thing I think now is the blood sugar.

At the resort...

Hooah, here I am, hanging out at Children's. :)
Yesterday I came in for a follow-up appointment, which lead to a bronch/biospy being scheduled for 11. I figured that would happen, since the levoquin didn't seem to be working the way it was supposed to. I was still coughing, short of breath and having a little bit of chest pain. Not a lot, but enough to mention. So we did the bronch and I was admitted to C5 (the new tx floor here) afterwards.
I'm on steriods four (!) times a day, and an IV antibiotic. The preliminary results show that there isn't any rejection (yay!) and it looks like I just got whatever everyone else has that's been going around, but since it's me we're being extra-careful. Oh well. Better than than not careful enough, I suppose. Best thing about these new rooms is they have private bathrooms with tubs (!!) so I can wash my hair and all that good stuff without it being a total ordeal. No trekking down the hallway to use the public bathroom before someone else walked in on us. What fun that was, let me tell you!
Looks like I might be here until Thurs/Friday, not totally sure yet. But since I have computer access I'll keep you all updated...

Friday, December 08, 2006


Well, I guess if the first time one gets sick post-tx is at almost 16 months out, then I don't have that much to complain about. Still...

Starting last weekend I had this dry cough, which David was a bit worried about but I wasn't. As long as it wasn't productive I wasn't going to worry too much about it. Well it became productive, but of course this week was loaded to the gills at work so I couldn't just leisurely not show up. So I didn't call clinic until yesterday, and I went in to have tests done, etc. PFTs were down a few points, and my sats were 97 (as opposed to 100 or 99, like they usually are when I go in) but I didn't have a fever, which was good. apparently fever is like the great big warning sign. I gave them a sputum culture (man I sooo though I was done with those) and Julie did a saline wash (a lot of fun, trust me. It didn't hurt but it felt...odd) and we did the usual CXR. I should have the test results back soon from those but Dr. A wasn't too concerned re: the PFTs and the CXR. So I'm on Levoquin and we'll see what happens. My joints are sore, which isn't new, but it's new ones, like my shoulders. I mean, your shoulders hurting? Something you don't think about until it's actually happening.

Of course all this has to happen right before Christmas and Messiah . Hopefully the levoquin will get this and all will be good...because next week is nutty at work too!!!

And,....not related to tx, but happy birthday to my godson! He's 9 today!

Friday, December 01, 2006

TX follow-ip visit

OK after all the "frivolous" posts below (oh, you know you like them!), I should probably give y'all an update on my clinic appt. today.

Per usual, I had labs at 8, to check immunosuppresant levels, kidney and other organ function, and other levels that will tell us whether or not we need to adjust med doses. The infusion clinic, where they access my port to draw blood (thank God!) is getting decked out for Christmas, and I got to say it's looking pretty good. Thye had the cutest teddy bear attached to a red velvet stocking that I loved. That's one of the benefits of going to a children's hospital--they tend to really decorate well for holidays, especially Christmas, because you really, really don't want to be in the hospital for Christmas. But I digress.

After that, I go to Main radiology to have a Chest XRay (CXR in medical jargon) done, and that usually takes all of five minutes. If I had a dollar for every CXR I've had...well I wouldn't be going to work tomorrow, that's for sure. But anyway. I can't sit in the regular waiting room, even if wearing a mask, so I hang out "in the back" by the exam rooms--many, many fewer people back there. You also get to watch the inpatients going in and out, which can be interesting.

Following that, I go back to the clinic where I do PFTs with the pulmonary techies (it was Kathy and Muffy today). I had a 63% FEV1 which is up from last time, and the score of my "hold your breath for 10 seconds so we can check gas diffusions" test (aka the evil Cleveland Clinic test) was 65%, up 5 points. We also have a new test that measures lung inflammation--you want the number to be under 25, and I was 13.2. So all the numbers were happy, even weight, because I think I managed to lose a few pounds (OK, like two), but still, after turkey day,I'm happy. Dr. Astor was also happy, and no changes thus far. Julie (the nurse coordinator) also updated my mennigitis vaccine before my surgery in January, since there's going to literally be "Messing with my head." :) I also met with the social worker briefly.

Today I also visited my endocrinologist, Dr. Hardin, who is switching my insulin doses. Apparently we're going to mix the lantus (long-acting insulin) with Humera (or something...humerus, whatever), a short-acting insulin, before dinner, and then use the Humera pen before breakfast and lunch. So we'll see how that works. My blood sugars have been high after lunch and dinner so hopefully this new program will provide better control. But other than that everything is going well.

I go back in January for a physical w/ Dr. A before my surgery Jan.17. So I get a little "holiday break" from the Resort. Yay!