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!

Why I blog II

For girls like Jordan: (emphasis mine)

Local teen waits for lung transplant

Brenda Tollett Associate Editor

Ada— As students at Ada High School prepare for summer break, 17-year-old Jordan Lee Ulrich waits for a lung transplant.
The Ada teen was was born with Cystic Fibrosis and has spent much of her young life in hospitals.
“Not a single year has gone by when she didn’t have to be hospitalized,” said Lesa Ulrich, Jordan’s mother. “In 2007 alone, Jordan was admitted to Dallas Children’s Medical Center in February and stayed until April. She was there again in July. In September she went for her transplant evaluation at St. Louis Children’s Hospital in St. Louis, Mo. Shortly after returning to Oklahoma she had to be hospitalized again in Dallas for all of October, November and most of December.”
Now she waits at St. Louis Children’s Hospital for a new lung to become available.
Until late 2007, Lesa Ulrich said her daughter had done surprisingly well. She began having trouble controlling pain in her lungs and couldn’t breath without an oxygen machine.
“On Christmas morning, she wanted to come downstairs to open presents,” Lesa Ulrich said. However, the teen was to weak to walk. Her father, Dr. John Ulrich, carried her down the stairs but within 10 minutes she exausted.
Her routine follow-up appointment with the St. Louis transplant team in March 2008 turned into a three-week hospital stay, leaving the family totally unprepared. “Upon arriving at her appointment, Jordan’s pulmonary function test scores were very bad,” said her mother. “We had actually already checked out of our motel and were on our way home when St. Louis (transplant team) called and asked us to return.”
Hospital officials, according to Lesa Ulrich, were concerned her daughter wasn’t well enough to return to Dallas. Using four of the strongest IV antibiotics, Jordan Ulrich was tested again one week later. Her scores were even lower than before and have continued to drop.
Fundraising for Jordan Ulrich’s transplant is required by the hosptial in St. Louis, according to Lesa Ulrich. In addition to costs associated with the transplant, funds are also needed for transportation, lodging, food, and medical supplies. A transplant fund has been established in Jordan Ulrich’s name at East Central Credit Union, 801 E. Main, Ada.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. According to the Cystic Fibrosis Foundation, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
When the Cystic Fibrosis Foundation was established in 1955, most children did not live to attend elementary school. Today, the predicted median age of survival is 37 years.
People with CF can have a variety of symptoms, including:
✔ very salty-tasting skin;
✔ persistent coughing, at times with phlegm;
✔ frequent lung infections;
✔ wheezing or shortness of breath;
✔ poor growth/weight gain in spite of a good appetite; and
✔ frequent greasy, bulky stools or difficulty in bowel movements.

You know the part that got me? The part about being able to enjoy Christmas for only 10 minutes.

I love Christmas, as anyone who knows me even slightly will tell you. It's such a major event for me. I go hog wild with cards, presents, and church choir stuff. It really is "the most wonderful time of the year." If I could only celebrate for ten minutes....I can't imagine. That's always been a "normal" day for us. I have never (thankfully!) spent it at The Resort.

One year I was on home TPN and lipids and Mom insisted I keep on the "feed" while we opened gifts. I was not happy. But I have always enjoyed Christmas day and our Christmas festivities in general. OK, yes, once I was a Branden's Christmas party doped up on phenergan, but I don't think anyone noticed. :)

Pray that Jordan has a better Christmas this year. She deserves it.

Beads

I was at the "resort" today, and noticed a pamphlet for a new program Children's is starting, called "Stinger's Bravery Beads", which is named after the Blue Jackets' mascot and is funded through the Jacket's Foundation, which helps fight pediatric cancer.
As I looked at it, I though, "wow, this is great! I would love this!" Then I noticed something--it's for cancer kids only.

Why is that?

I looked at the list of things that you could earn beads for. The list is long, but here's what I've done:

--Birthdays (since diagnosis)
--BM Transplant (I'd replace with lung, but you say tomato)
--Clinic Visit
--Dressing change (let's see...where do we start? PICCS? Ports? The dressings from the burn post-surgery?)
--ER visits (ha! Ha! I'd have half a million)
--Fever
--Holidays (since diagnosis? In hospital? Either way, we'd have this covered)
--Hospital Admission (no comment)
--Line In (PICCS? Peripherals? Port access? Does this count ones that went bad, too?)
--Line Out
--Major Surgery (the transplant, the CI)
--Medical Exam (oh, the thousands upon thousands)
--New Diagnosis
--Off TPN (yup, done that! Several times!)
--OT/PT
--PCA/Morphine (ahhh, the Lovely PCA pump!!)
--Pokes (millions. I kid you not.)
--Scans/Tests (MRI, Bone scans, VQ Scans)
--School (in house)--did that with my first diagnosis
--School re-entry (many, many times)
--Spirituality (a lot! Thanks Fr. Mark!)
--Terrible, Horrible, Very Bad Day! (um, lots)
--TPN
--Transfer to PICU (one, or two, if you count post-tx)
--Transfusion
--Tube insertion (Chest, Catheter)
--Very Good Day (A few of these)

But there's one on the cancer list that you will NEVER see on the CF list:

--End of treatment

Because CF treatment only ends when youdo. There's no remission, no recovery, no "Five years and we think you're cured" status. Sure, I don't do Chest PT anymore. Other things have taken its place. But that doesn't mean that it's over.

I think we deserve some beads.

The iPod meme

Put you iPod on shuffle and write down the first 10 songs that come up:

1) "My White Knight" from The Music Man (Rebecca Luker)
2) "Crusin'" from the movie Duets
3) "Losing My Religion" REM
4) "Mary's Boy Child" Charlotte Church
5) "I'm All Alone" from Spamalot (Tim Curry and Michael McGrath)
6) "On This Night of A Thousand Stars" from Evita (Madonna and Antonio Banderas)
7) "Dear Old Shiz" from Wicked
8) "He Was Despised" from The Messiah
9) "Traditions of Christmas", Mannheim Steamroller (A Fresh Aire Christmas)
10) "Sun and Moon" from Miss Saigon (Lea Salonga and Simon Bowman)

Now, write the meaning/associations (if any) these songs have for you:

1) The first musical we did in high school. And the lyrics fit what I want in a man so perfectly:

My White Knight/ Not a Lancelot/ Nor an angel with wings/ Just someone to love me/ Who is not ashamed of a few nice things/ My white knight/ What my heart would say if it only knew how/ Please, dear Venus/ Show me now./ All I want is a plain man/ All I want is an honest man/ A quiet man, a gentleman/ A straightforwrad and honest man to sit with me/ in a cottage/ somewhere in the state of Iowa/ And I would like him to be/ More interested in me/ than he is in himself/ and more interested in us/ than in me./ And if occasionally he'd ponder/ what makes Shakespeare and Beethoven great/ him I could love till I die./ Him I could love till I die./ My white knight/ not a Lancelot/ nor an angel with wings/ Just someone to love me/ who is not ashamed of a few nice things./ My white knight/ Let me walk with him while the others ride by/ Walk and love him/ Till I die/ Till I die.

2) This is a great driving song. I love to play this one in the summer with my moonroof open. :)

3) LOVE this song. My college boyfriend and I would play it all the time. Still love it.

4)At the 8:00 Christmas Vigil Mass at my parish, the cantor always sings this piece before the Mass. Reminds me of being a kid again.

5)This is just too funny. Saw this musical with Cindy and cracked up the whole time!

6)I went through a massive "Evita" phase where I memorized both discs and got all the lyrics down. This is one of my favorites, when Eva is trying to convince one of her lovers to take her to Buenos Aires.

7) Wicked is my second favorite musical (it is very close on the heels of Phantom), and this is the song that opens the story after the scene-setting "No One Mourns the Wicked." I love the choral harmonies. Reminds me of college and see this with my best friends during my first transplant anniversary trip to Chicago in'06.

8) This is one of the Alto arias from Part II of The Messiah. I absolutely love it; it quotes some of my favorite passages from Isaiah 51-53. It's gorgeous.

9) Reminds me of driving to Midnight Mass with my family, the air crisp and cold and the stars shimmering. We always listen to this CD on the way to Mass, and now I do the same thing, since I drive separately to prepare for the choral pieces ahead of time.

10) I got this CD for my high school graduation and immediately began to memorize it. Kim is a great Alto/Mezzo (although much more Alto) role and I fell in love with the score quickly. This is a wonderful duet from Act I, after Chris and Kim realize they are in love.

I tag--anyone with an iPod. :) So I better see lots of responses!

Scar tales

I got a new beauty product catalog in the mail today and, of course, found a whole bunch of lovely things that I would just die to have. (I know, I know, Christmas just ended....)
But one of the things made me think. It was an item that said it would reduce scars, with the product description saying things like "No one likes to see scars", etc.
Well, let me tell you, I've got quite a few. There's the surgery scars (which no one can really see, unless I'm naked, because even a bikini covers them), the big burn scar on my right arm, the PICC scars all over the inside of my upper arms, and then the ones I just got through life experiences (non-medical). They've never really bugged me. Seriously. Even the scar on my arm, which, while healing, is very visible, and I still get questions about it. But I figure, it's not going away. I'm not going to go all bonkers trying to cover it up, especially when it's 90 some degrees out. I'm going to wear a tank top and if people have a problem, too bad!
I was reading a fashion column in the Plain Dealer awhile back, and a woman wrote in with a problem similar to mine. She wanted to cover it up. And I'm thinking, "honey, there's no way you can cover it up all the time. Just go with it. It's part of you, and do you really want to be uncomfortable?" I've found that when it was covered with gauze or bandages or whatever, people noticed it more as opposed to when it was just there.
Now, if I ever got married, I may want a wedding dress with lace sleeves or something. But really, who knows? It doesn't bother me. I'd rather have the scars than be dead,I'll tell you that. :)

Benefits to IV drugs

There are some benefits to being on IV drugs that inhibit appetite and, therefore, your options outside the house:

--if you don't wear mascara for a few days, your lashes look REALLY GOOD when you finally put it on. :)

--People are always asking me how I take care of my skin. Honestly, genes and taking care of it (lotions and potions) are part of it, but I really think the other part is there are times when I go days, weeks, without putting anything on it. No make-up, nothing. I mean, when you're bonding with the toilet seat, how much make-up do you really need? Hello?

OK, so these are mostly cosmetic benefits. But they're something, right?
It is a beautiful day here, my stomach is sort of cooperating, so me and the parents are going to eat lunch and generally live outside the house. :) :)

It is NOT in my head!

There are many things in my head, but delusions of pain ain't one of them.
A lot of times when I get a lung infection, I get pain with it. In fact, pain is often a precursor to any data of infection showing up in PFTs, CXRs, etc (as it was this last time). So when it happens I pay attention to it.
Well some people that take care of me like to relegate it to a subconscious creation. This is usually phrased as, "are you anxious about anything? Worried?" or various other forms. It can also come as "wow you're having a lot of pain for this amount of infection."
I just think the anxiety question is about the dumbest one on the face of the planet. Well let's see. I'm having chest pain, usually very sharp, constant chest pain, if I'm making an issue about it. That usually means infection. That's not fun. That could lead to rejection. Also not fun. So yeah, I may have a bit to be worried about. But the worry is not CAUSING the pain. The pain's already there. Now, I'm sure that being physically uptight and anxious is not helping. Relaxation tapes, etc. like the ones Kathy makes me. And those help. But they help to an extent. And that's it.
Pain is real. It is not all in my little head, I'm not making it up because I want good drugs or need attention or whatever. If I'm having it, I would like people to pay attention to it. Thank you.

Home again home again, jiggity-jig

And we're back...hopefully for longer than 36 hours.
But first!----HAPPY TWO YEAR, AMBER!!!! :) :) :) We are great! (Well, OK, you are great)

I got home around 3:30, I think...my priest (Msgr. Funk) came to visit, which was great, because he's really nice. My stomach is still a bit out of it, but that's OK, too, I'll just go slowly. We're doing IV drug every 8 hours (not too bad) and then once a day levoquin (also not too bad), and I have a script for oral percocet (again, pretty good). Since I didn't sleep at all last night, I'm catching up on it today, and will be at the parents' house probably until Friday, until I get the IV system down. Not that it's hard, but you never know if something's going to go amiss, and if it does, I'd rather be here. :)
Also read Nicholas Sparks' new novel The Choice, today, which was really good, although I had no idea where the book was going until I hit the second part. But I really liked it--great characters and setting, as always in his books.
So back to the homefront, and all that that entails...
Oh, and my transplant buddy K (little heart t/x) was riding her tricycle in the hall way today!

We're back!

Oh nback in a big way, here at The Resort...
Discharge on Friday, and felt OK. Spent the night at my parents--well most of it--before driving back to my apartment. Sat. was spent relaxing, napping and trying to work off the drug side effects from Thurs./Fri. I made a coffee cake, did a little bit of cleaning (as in throwing away old mail), organized some books, and watched Season 3 of Desperate Housewives. Since I had to sing 8:30 I went to bed around11.
WEll that didn't work because I got very suddeny, very severe chest pains. Which necessitated a call to the powers that be, which led to an appearance in the ER at 1:00 a.m.I was put in a chair and immediately taken back to the "critical care rooms", which are just stocked with every medical goody known to man. I had my port accessed, blood drawn, supplemental oxygen given, BP cuff, vitals every like 15 minutes. I got some dilaudid via IV and a CXR was taken. CT wants a scaned with contrast, which meant the lovely hurt for a peripheral, which eneded up in my thum. We got the pictures, not as clear as we would've liked b/c we used a very small guage needle (all my veins could handle without blowing), so then it was back toa regular ER room while they made room for me up on C5.
We got up to C5 around 6. I had the lovely Medical Resident take my history and drug list, then the nurse came in w/ more dilaudid. At this point I think I slept for maybe 45 minutes. Dad was still with me. NO sleeping. But we did watch most of Spanglish, which is a movie we enjoy.
Sunday was spent basically throwing up everything I ate. So we did ativan for that, which I didn't know you could use for nausea, but it worked. It also gave me the sleep I hadn't had in, oh, 20 some hours. Wooohoo! Dr. A comes in today around 10:30 and tells my nurse he can't wake me up. Elizabeth says, "she only fell asleep at 3 and hasn't slept for about 36 hours."
Basically today was about pain/nauseau management. There is a pneumnonia going on and we're doing an IV drug as well as the oral levoquin. I"m a wee bit nauseous right now but nothing like yesterday. Ugh. HOpefully bile stays where it belongs. We're doing oral pain meds every 12 with tylenol in between if I need it. I just want to sleep normally tonight.
Ian went home early this morning but we got to see him on Sunday. He looked really good and so adorable. His new sister (Sophia) is due in November! I bet his sisters will be so happy to have him home. And my friend Kennedy (another heart t/x) is also on the floor now after coming out of the CICU. So there are friends here. Yay!
All right that's your update. I've been reading a ton of magazines, as usual, and sort of watched the Steelers win yesterday (Oh happy day!).

Back

Well apparently the visit to Shangri-la turned into a sleepover! Ha!
I went in on Thursday and while the numbers were all stable, I was still having some symptoms--rattling in my chest, increased cough, a wee bit short of breath. And, of course, chest pain (which I know and love...ha). Dr. A looked at my CXR and said that if I wasn't having any symptoms, he'd probably say it was normal looking (or at least stable), but since I was having some issues, it would be best to bronch and see what's happening.
So off to the bronch suite we went! Pretty normal there, and we did find some buggies in the initial findings, so Dr. A didn't know if we'd want to do IV drugs or orals--it would depend on what grew out over the next 24 hours. So I stayed the night, getting IV drugs (well, one) and oral antibiotics. I also got the lovely dilaudid/phenergan combo (whoever was the doc on call last night REALLY loved me. :-D), but I'm doing OK now.
I was dischraged around 4ish, and it's all oral antibiotics so yay! I go back in on Monday for another CXR and blood work.
Had some excellent nurses (like always), and overall not too bad a stay. I won't go so far as to say it was "enjoyable" but it wasn't like being in Hell for 36 hours. :)
My little buddy Ian (heart t/x) and his mom were also on the floor when I was there, so I got to see them today which was fun. Ian is the sweetest little guy and he finally gets to go home on Monday! Yay!

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.

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!!!

Update!

Yeah OK it's been awhile but! we DC'd all the drugs yesterday: vanco, the pill, the TOBI aerosol. PRAISE GOD. I am so excited. I took a real shower this morning and my hair ROCKS!!! :)


I'm feeling a lot better and hopefully my appointment on Monday will go swimmingly. I really don't want to have another setback. let's rock and roll!

Also, my ear surgery is tentatively scheduled for the week of Memorial Day weekend. At least I can celebrate my birthday and go to my cousin's First Communion bash without issues. So that's good.

A good Clinic

Today was a good clinic day: PFTs at 54%! (much better than the 40% they were last time!). Weight good, NiOx good (like an 8) and the DLCO was 38%, which was up 8 points from last time. So all is happy. I will go back next week to be checked again.

The only thing is my vanco level was high so we're going to an 18 hr. schedule for a bit. This creates some work problems. Oh well we'll just have to figure out something, but at least I can take a real bath tomorrow since we have to change the port anyway.

Also I am going to Riverside to have my hearing aids re-programmed on Thursday, thank God! So maybe everyone will stop sounding like Charlie Brown's teacher!!

Spring! Spring! Spring!

Wow it's like 60 degrees here, and if anything can lift a girl's mood, that is it. :)
I went back to work for the first time (again...) on Friday. Since we're going to be busy busy this week I thought it would be a good idea to hit the desk on Friday, when we're slow, and clear as much chaos as possible, including the 100+ emails in my inbox. So now I feel ready to go for this week.

Appointment with Dr. A tomorrow at 7:30, as usual. I'll let you know how it goes but I certainly hope things go well. I am not getting up at 5:00 for nothing I hope.

Funny story: last night my friends and I went out to celebrate Branden and Andrea's birthdays (they're a day apart). Tiff came over around 4:30 and we were going to leave around 6:30. I had started the vanco IV early so that it would be done by the time we left, but it wasn't. It finished sometime on Main St. So I had the saline and heparin flushes with me and as Tiff was navigating the roads, I was disconnecting the ball and flushing the port. I had forgotten to bring a bag for the stuff, though, so I just left it on the seat.

Tiff locks the car and looks at me. "You know, if anyone looks in my car, they're going to think..."

I laughed. "Yeah, I should've brought a bag."

Such is life, eh?

Homeward Bound: The Incredible Journey!

It really is an incredible journey....

First I thought I'd get out of here at 4 b/c we do the vanco at 2. But no. We did vanco levels around 1:30 and had to wait to see if we wanted to adjust the dose. Well I guess we didn't. Then we had to wait for the dose to come up because we may do some here and then some at home. Then we decided (OK, The Powers That Be decided) to do the whole dose here. Starting at 4:10. Which means I don't get to leave for like another hour.

GRRRR.

But at least Julie came by and we went over the discharge stuff so we are cool with that. And now we're doing the vanco every 12 hours (Q12), which is easier but also a pain w/ work in the AM. So I think we're going to do a 5 and 5 schedule so I can get to work at my normal start time of 7:30. This is where showering at night is actually a benefit. And I can do the TOBI at 6:00 am while I finish the vanco infusion. So this will all work out and hopefully I can go to work on Friday! I am planning on going to the Soup Supper and Choir at church tomorrow night which should be good. I want out of here....

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!!

The times they are a-changin'

So to update:
--Had a talk w/ Kathy this afternoon, very good. Always is.
--Dr. A and Julie came in and talked about what to do next.My O2 sats are still pretty low (as I write this they're 94%), so he doesn't want to send me home w/ O2. I heartily agree! So it looks like I'll be here until at least Monday, because on Saturday Dr. W (my ENT) can come in and drain my sinuses, since the CT that was taken this morning showed they're a wee bit congested. That will help because nasty bugs like to incubate up there and if you don't flush them out every once in awhile they can drain down (like when you get a cold) and go into the lungs where they cause lots of problems. So we're dealing with that.
--There was supposedly fluid on the CXR, but when Mom and I went down to Ultrasound, the techs couldn't find any! So maybe no big scary needles. Huzzah! :)
--Dr. A also wants chest PT (I thought we were sooo done with this) 4x/day to help loosen up the secretions that are hanging out in my lungs. He also talked about me starting to use the Flutter Valve again. The Flutter is basically a device that looks like an overgrown playground whistle. Inside is a small cone which holds a metal ball. You blow into it and the ball sends vibrations down into your chest to loosen mucus. Now I've never really liked it because 1) I never got any results with it and 2) you really have to think when you use it, like what is the proper technique and all that. If you don't, it doesn't work. That's why I liked the Vest, because all you had to was strap in and turn in on. But I digress. I'm not sure if I will do the Flutter at home, or not. I suppose I'll find out when I'm discharged.

I am waiting on dinner (the food here really isn't bad!)and for my parents to come back from theirs (in the lovely cafeteia, oh the joy!). And two packages came for me today! One from Nordstrom and one from Crane's stationery, which has part of Branden's birthday gift. :) So at least there are some fun things going on with all this drama.

The song that never ends...

OK, or the medical drama that never ends...
Go to clinic on Tuesday (all dressed up in a new suit, looking good :-)). PFTs down again this time to 45%. DLCO down. Box is down. My inflammation score (the NiOx), however, is down, which is a good thing.
So I see Julie and Dr.A and (surprise!), we do yet another bronch. Which means I miss the second day of session. Grrrr.
So we do the bronch. Apparently there's a lot of stuff on the left side, so it was a big wash-out. I was taken up to C5, where, instead of my usual practice of just going home, decided to stay the night.
Good thing I did. I have never had such a bad night after a bronch. I couldn't keep anything down, so I was given IV phenergan (gift of the gods), and I was having intense, severe pain all along my left lung, with it concentrated around the middle of that side. Normally after a bronch I'm sore, but this was sharp, impossible-to-ignore pain. For that, we did dilaudid and percocet (not together!), with the percocet finally winning out.
I was here all day yesterday, on O2 because my sats were low, and all sorts of other monitoring gizmos. We switched to oral phenergan and percocet (They don't make you as loopy) and did some new CXRs.
Well today we found out that it's pneumonia--back again! So we dropped the amakacin, are still doing the meropenum, and don't know what else yet. I'm due to go down to Ultrasound soon because there is also fluid in my left lung. So they're going to look at it, try to determine what it is, and then "tap" it with what I'm assuming is a big, scary needle. Emily don't like big, scary needles. So we'll see how that goes.
For now I am on O2 (I think about 2 L), and I've been disconnected from the telemetry/monitoring stuff, so I just get regular vitals taken, usually at the beginning and end of every shift change.
Sleep has been somewhat elusive, the first night because of the pain and last night...well I don't have any ideas about last night. But whatever.
I'm also mad because the amakacin did a number on my hearing so now I'm even more deaf. Which just thrills me. But I ddi see Dr. W today and he's going to flush my sinuses here on Saturday,which will help the infection situation by getting rid of bad mucus and germs that like to hang around up there. He's also going to talk to Dr.A about re-scheduling my surgery ASAP.
I am so frustrated and tired of dealing with this bugabear.I certainly hope this next course of whatever dos its job, and I won't be living at Children's. I want to get back to my 'normal' life ASAP.
Will keep you posted (so long as I can guard this PC..ha ha)

Update

I have just finished my (hopefully!) last IV treatment! Woohoo!
Tomorrow I see Dr. A @ 7:30 and then Dr. H, my endocrinologist, after that. Woowee.
And we have our first session of the year at work tomorrow. Let the good times roll!
I'll let you know how it goes...