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.