New Health Update

I haven't got a whole lot to update ya'll on right now, but I'll tell you what I know.
Friday mom and I went to Omaha for my cholangiogram. This type of cholangiogram was done right to the liver instead of going up through the artery in the thigh. We had a long wait, but we met a lot of nice, really cool people. The Interventional Radiology center is really cool. You have a curtain in front of your "room" but there are walls on either side of you (keeps things a little more sound-proof). There's also a flatscreen plasma TV in every "room" and there are twinkling lights in the ceiling that look like stars. There's also a strip of blue light so that it lookes like twighlight. I tried to capture the veiw with the camera phone and I've attached the picture. It doesn't do the scene justice, but it will give you an idea.

I was put under general anesthesia with intubation and everything. The procedure lasted about an hour or so. When I woke up I was in a lot of pain, not to mention my throat felt awful after having the tube in it. I got some morphine for the pain, which helped. Before I knew it they were making me sit up in a recliner. I was very reluctant about everything. I was so drugged I was hardly conscious! It was a slow recovery, but I was able to go home that night.

It took a couple days to get all the drugs out of my system. They really do a number on me! But still, as far as pain goes, not a bad recovery. I haven't had to rely on anything stronger than Tylenol as long as I stay in bed for the most part.

The results of the tests were this: There were no obstructions in my bile ducts, though the ducts are very small, so bile flow is slow. Everything looked pretty consistent for a liver with cirrhosis.

This means that the bile ducts are not the problem, so it leaves the high bilirubin and jaundice unexplained for the most part. Still, I've been getting better bit by bit. I think getting off the birth control has really helped. My appetite is getting better, I have more energy and I don't look so yellow. Most importantly, I'm not in so much pain.

On Thurday all the liver doctors have their meeting and my test results will be discussed then. I should hear from them around that time about where we should go from here. They'll probably want me to get another blood test to see how my liver enzymes and bilirubin look after being off the birth control for about a week. I'll keep you all updated with what the doctors say.

Health Update

So this is Becca's health update 300 or so. I've lost count.

First of all, I'll start off with a little background of my fabulous liver disease. PSC (Primary Schlerosing Cholangitis) has eaten through two of my livers so far and is eating through the one inside me as I type. What PSC does is kill bile ducts. Once said bile ducts are deceased, they leave scar tissue (this is called cirrhosis, or "hardening"). When the bile has limited placed to go it flows into the blood stream instead. This causes the person's skin to become yellow and is called jaundice. It also shows itself as increased bilirubin on blood tests. Normal bilirubin would be 0-2.
No one can predict how fast or slow PSC will progress or if it will even stop completely. If it continues to progress, it will eventually kill most of the bile ducts and liver will be mostly scar tissue, i.e. cirrhosis will take over. Then this person will need to receive a liver transplant in order to survive.

I've seen my old livers (they peacefully reside in a tissue archive in Minnesota) and boy are they hard and green. Right now, I feel as if my liver is hard as a rock, so the results of my biopsy that say my liver shows further cirrhosis are no surprise to me.

If you've seen me lately, you'll know that I have a yellow tinge to my skin. My bilirubin is 5.5. My liver doctor in Omaha has ordered a cholangiogram for this Friday. This is a test where a catheter is inserted into the artery in your thigh and moved up to the liver where bile ducts are injected with dye to detect any strictures. If there are strictures they sometimes need to put in a stent (a tube that opens up the bile duct and runs outside of the body). I've had both cholangiograms and stents in the past.

If there are strictures in my bile ducts it would certainly account for my liver pain. It would also explain the bilirubin/jaundice thing. If everything looks fine, then we don't know what's causing the pain and the fact still remains that my liver is deteriorating.

Other symptoms of mine include chills, low temperature, very low appetite, low blood pressure, extreme fatigue, some difficulty breathing, and of course, constant liver pain. Still, I'm able to take pretty low doses of pain meds and do a few things like sweep my room or make myself a snack everyday. I have a feeling, though, that after my procedure I'll be completely bedridden again. I've ordered lots of origami crafts off the internet to keep me occupied.

So what's the doctor's guess on how this all started? He thinks that perhaps the birth control I'm on for ovarian cysts and the high volume of antibiotics I was on during the winter may have jump started some of the liver problems. I'm not on antibiotics right now, so that's not a problem. My birth control has now been stopped.

I saw my gynecologist today and had an ultrasound to check on the cysts. When I was first diagnosed in the emergency room the right ovary had a cyst of 5 centimeters and the left was about 3 centimeters. Now, after almost 3 months of birth control, they have done the opposite of what we thought they would: they grew. The right cyst is now 7 centimeters and the left is 5 centimeters. I'm going to have to have surgery to remove the cysts and patch up any endometriosis and then go on some heavy-duty drug/hormone therapy to shut down my ovaries so they're not naughty anymore. My gynecologist is going to talk to my liver doctor about when we should do this and how to go about it since the procedure is so close to my colon and we want to prevent any further injury to it.

I think that's pretty much it for now. I'll try and keep everyone updated on what happens Friday. Thank you all for your help and concern!

Liver Let Die (a.k.a. I'm a Liver, no a Fighter)

I will write this blog in green because it's the color for organ donation.

I've been meaning to post a blog about my health since, oh, December 07. So here I am, posting a blog about my health.

I got 4 sinus infections in a row, starting around December before I was diagnosed with sinusitis. Then I got the flu. Then I went to Omaha to get a liver biopsy and a colonoscpy (which mean 2+ days of fasting and laxatives that made me really sick). They gave me sedation instead of anesthesia, and it wasn't enough so I was sent home and came back the next week, having gone through a second painful prep, and did the whole thing over, this time under anesthesia. The colon looked good and the liver looked good, but my blood tests were showing elevated liver enzymes. Plus, I was having such back pain from the biopsy that I had to go to the ER twice.
Not long after my second ER visit I was back, but with a different pain. A CAT scan showed large cysts on both ovaries. I was put on birth control (Yay! No more responsibility! LOL)

I continued to have mild to severe pain in my liver area and practically no appetite. I also suffered from bad nausea and sometimes was not even able to take my medications.
I went back to Omaha for another liver biopsy this past week and, again, they gave me sedation. Again, I had to come back to do it under anesthesia. The biopsy showed chirrosis (hardening/scaring of the liver), but no rejection that they could find. My blood tests still looked back and my bilirubin was up (meaning that I am jaundiced, meaning yellow skin).

So now we are going to do a consultation about my pain and to see if I need to be put on the list for a new liver. We're trying to make the decision about if we want the possible transplant to be done in Omaha or elsewhere because some of the staff at UNMC were very disrespectful to me, to the point where I wasn't getting the care I needed.

Anyway, that's it in a nutshell. There are plenty more details, but I'm too tired and lazy to type them all up.

In conclusion, please be an organ donor because when you die, I'll need your liver. Toodle-loo!

*EDIT*

A friend emailed me with some questions about the above and I thought I'd post the answers here since there are some of you who might be interested to know.

So how do they determine if you need another transplant?

They look at all my recent tests and see if things are improving or not. For instance, the liver disease I have, called PSC, kills the bile ducts in the liver. When the bile ducts die, they leave scar tissue. The more dead ducts, the more scar tissue. The scar tissue is hard and is called chirrosis. Eventually, with the lack of bile ducts, I suppose, the liver will die. My liver is becoming more and more chirrosed, which means that the disease is moving. My liver enzymes are also elevated and my skin is jaundiced (high bilirubin), both signs of progressing PSC.

and will it take a long time to do that?

I'm not sure how long it will take. I mean, obviously there is a limit because if we wait too long my liver will die :P What we need to decide is where I'm going to have my liver transplant because that is where they will need to evaluate me. One thing to consider is which hospital has the most organs available to it; that way I could get a liver sooner. That aside, Omaha would be the obvious choice, but unless we can get some answers for why I was treated so badly there this last week, we won't be going back for any more procedures. Mom is working on writing a letter and such.

and are you going to go to Minnesota to see your pals at Mayo?

If UNMC doesn't work out, Mayo would be the obvious second choice. Again, the question of organ availabilty is there. Also, I would no longer be a pediatric if I went to Mayo and we have no experience with how they treat their adult transplant patients, so that would need to be looked into as well. Since my dad will be here this weekend, hopefully we can reach some sort of tentative decision so that I can be evaluated for the transplant as soon as possible.

and if they decide that you need a new liver, do they prioritize you, or do you have to wait?

I'm guessing that's where the evaluation comes in. It should decide how soon/badly I need a liver and all that other stuff, so that they know where to put me on the list. You never know quite when a liver will come and when your status on the list will change. For instance, if my conditioned worsened I may be moved up on the list. Or if someone was removed from the list, etc. It depends on my condition as well as the conditions of others on the list as to where I'm placed. It's all a big legal/ethic/medical to-do.

And I suppose most of you want to know about the incidents that happened in the endoscopy center this last week. Well, it's all very complicated. We expressed our concerns about recovery and our desire to have my IV left in for a couple days just in case I had to go to the ER (it was my 4th IV that week). Everyone was all, "Sure, of course, sure, no problem, we understand". After the procedure my mom had to leave and my Gramma stayed with me. The minute my Gramma left to see my mom out the door I heard the nurses whispering about me. I'd already complained of terrible pain and had been given morphine. I couldn't hear exactly what they were saying but whenever my name came up they would start to whisper and it didn't sound nice. They made comments about my mom leaving us "stranded" in Omaha and what an inconvience is was to keep me there until my sister could come pick us up later in the evening. When my mom was there we talked to the nurse to see if I could be admited because I'd had such bad recoveries in the past and she got rather snappy with us. The doctor came to see me later on and said no, I didn't need to be admited, everyone had pain after biopsies (even though we told him that I'd been having persistant liver pain for months and had had two ER visits after my last biopsy). He called me "sensitive" and commented on how the doctor who had done my previous biopsy and had had to stop because I was in too much pain due to my inability to respond properly to sedation, was mad because he hadn't been able to finish his job. He also commented that this doctor lived with "whiny females". Then they took my IV out, too. It's kind of hard to describe all the mutterings and the doubtful looks, but needless to say I went in the bathroom and cried and was afraid for myself in case I got really sick. I'm one of those people who can look and talk like I'm perfectly healthy but I can be in physical agony at the same time. Sometimes it make it hard for people to believe me. I cried some more when I got home and talked to my mom, who went bonkers, of course, and is now writing a letter and will not send me back there for any procedures.

In my day, at the Mayo Clinic, transplant patients were treated with the utmost of caution. Even for a simple biopsy I was admited and kept over night, regardless of how ready I felt to go home. Even the cosmetic surgeon who took out my wisdom teeth last year kept me overnight even though I felt fine and didn't need any painkillers. So, it makes me mad that my very real pain was treated so wantonly.

My mom said that she put my story together with some of the things the doctor who did my first biopsy had said and she thinks he sort of "spread rumors" that Rebecca Manner fakes her pain. Did it ever cross his mind that maybe my pain might be real because I'm immune to sedatives...?!?!? And he knew that full well since he once tried to do a colonoscopy on me when I'd only had sedatives and it didn't work.

So that's my long, long story

Samson

Arount 2:30 this morning I woke up to check on Sam and he had already passed on. He seemed to be doing a little bit better last night after some sub-q fluids and warm sponge bath. I knew it was his time, though. I’m just glad he only had a couple days of sickness and that was it. It wasn’t long and drawn out.

I adopted Samson on September 13th, 2006 from Lincoln Rattery. He was about 5 months old then, but already a very big guy. I named him Samson because the top of his head was bald at the time (Sam was a patchwork double rex). Sam was a total mama’s boy, with the sweetest, most endearing face you’d ever see. When he got neutered, he went to live with the girls in the big Ferret Nation cage. He made it his personal duty to take care of the two hairless dumbo girls and make sure they were warm. Sam was a very special rat to me. He was the second boy rat I ever had, so he got spoiled a lot. His large, squishy body with it’s soft fuzzy rex fur and his calm personality was a blessing to not only me, but all the crazy girls he lived with. I never met anyone who was immune to Samson’s charm (especially his auntie Staci at CCRR. She tried to steal him from me on various occasions). It’s still such a shock to me that he’s gone.

Here he is in February, 2007

This is Sam, just a few days ago when he was still feeling fine

I'll miss you, Mr. Sam.

Fourteen (a childhood reflection)

I remember being fourteen and fifteen. I don't remember being ecstatically happy, but I remember being peaceful and okay. I was okay with who I was and where I was. I'd realized, as much as a fourteen-year-old can, who I was and what I was meant to be. I remember things like walking home from school in a light rain, wearing the simple clothes I loved and listening to Pete Yorn. I felt an accord with myself, with nature, with God. Although I wasn't putting anything like an identity on God, not even the name "God". It was just a quiet knowledge and embracing of a force much bigger than me, yet so in tune with who I was I could not ignore it. It understood me and calmed my heart.

I knew I was put on this earth for stories, for pictures, for music. In essence, to create worlds that better illuminated our own, like looking outside from a church's stained glass window, one pane at a time. Of course, I didn't pick the arts as my education and career path; I picked science. I don't regret my decision. It's just that my spiritual awareness grew from that quiet walk in the rain into a fabricated battle for my life. While I hesitate to say that my conversion to hard core Christianity encouraged this, I can say for certain that my Christian peers did.

It wasn't until I was nineteen years that I realized what I mess I was in. I was growing into an adult and the pressures of the world coupled with the pressures of the supposed spiritual were too much. I longed again for the quiet evenings spent readings stories in my room and the quiet, rainy walks home from school. I could sense God then. Now, all the propaganda in His name has barred my way to Him. My friends were leading me into endless tunnels that should have been stories but (I was told) were real. And I was growing up. The world wouldn't let me be a little girl anymore, as much as I want to.

I began to realize then that I wanted to throw off this cape of fairy tales and get in touch with the real world around me. I found the world to be frightening…and beautiful. I realized the story I'd missed all along. And I realized my responsibility as an adult to be a part of that world (for the most part, anyway). So I dumped my boyfriend, I got new friends and I grew up. I chose to go into science because in it I saw the fairy tale beauty that was an actual part of the world I was living in. Besides, hardly anyone makes a living as an artist of any kind.

Looking back, being fourteen and fifteen were some of the most important years of my life. They remind me of who I am, who I should be. Years sixteen through twenty have been hell, but they are also very important. I'm serious about my career and being a responsible adult, but on the side there's till fourteen with the fairy tales, pictures, music and dancing. Who knew fourteen would be my saving grace?

Why I quit Unionaires (Among Other Things)

So for those of you who haven't figured it out yet, I quit Unionaires. I also dropped out of the chorister postion at my church, but that probably means nothing to most of you. So what happened? Why did I leave?

I don't know how many people know this, but I've stuggled with clinical depression and anxiety since I was 15. If you want to know my thrilling depression story, ask me. I'm not going to talk about it here because this isn't about depression, this is about anxiety.

My anxiety started getting worse as I grew into adulthood. I would say the worst of it "started" when I was 18 and a half. I'm 20 and a half now. I always thought that the constanst stress with physical cues, the emotional breakdowns because I couldn't handle it and the shutting down and staying home when too much was going on were all part of normal life. I told myself I was older and I better buck up and take it because this was life.

I just started working on some of my anxiety issues with my therapist and I was starting to do a little better. Things were looking up. Then three things happened: I got asked to babysit for another Bible study my boss was having (I'm a child care worker at St. Mark's Northwest Methodist). Then I was asked to babysit a baby boy for a few hours four days a week at Wesleyan, where my mom works (I had previously agreed to this). And last but not least, I got my Unionaires schedule for the next semester.

At a previous point, I was kind of pulled in both directions with Unionaires. I like singing, of course. I think I have a nice voice and I think I should use it, especially in a ministry sense.
But I don't really enjoy rehersals or much of the music in Unionaires. I don't really enjoy performances, either. I like the social aspect of tours and rehersals, but to tell you the truth, I never felt like I was part of the group. I felt like an outcast. While people were very kind to me, I really only made one good friend (Esther) during the year I was in the choir. Jordan was my friend previously, so she doesn't count. And while there are the people who were nice to me, I was also treated very rudely on more than one occasion.

This isn't to say the rest of you aren't my friends! I love you all and you're totally awesome. But you know those friends you call up when you have a problem and you hang out with them on a fairly regular basis? That's what I'm talking about.

Thursday morning I went through my calender putting down the Unionaires dates and the babysitting times. There were so many conflicts and it was so busy I could tell that I wasn't going to have time to really eat, or sleep, or get sick, or do something creative, or take care of my animals, or do my laundry or even do my schoolwork (which is my priority) and graduate. I kind of had an emotional breakdown and I thanked God I was going to see my therapist that morning.
Now you have to understand that I'm not a Union student with a campus job and I don't go to CVC. My main job is babysitting and sometimes pet sitting. I go to a small church called Northside on the other side of town and I am a very active member there. So every time we (meaning Unionaires) do a performance on any day of the week, especially weekends, I have to ask more than one boss for the day off and, if it's on a Saturday, I have to make all sorts of complicated switches to make sure my duties are taken care of at church. It's a lot harder for me than it is for a Union student.

I really like my schoolwork and I'm looking forward to being a veterinary technician. I like a quiet life at home with my family and animals. I enjoy most of my work babysitting. I like to write stories. On the side, I like to do a little musical stuff. I didn't want it to take over my life.
After talking to my mom, friends and therapist I made the decision to quit Unionaires. I was very unhappy where I was and now I feel so much calmer and more free.
I really had some great times with you all you Unionaires and I hope you stay in touch. Who knows? Maybe I'll come back some day.

The Trigger Log

This is a log I kept for my therapist when I was going through some serious anxiety issues. After so many years of being sick in bed I had no idea how to manage my time when I was relatively healthy enough to do things like join a choir and get a job.

Trigger Log

1-11-08 - Good example of a normal day when I am in conflict about appointments.

Didn’t do a “calm exercise” this morning because I was recovering from a night of sickness. Wasn’t stressed anyway.

Trigger 1: Emailed Dr. Lynn to tell him I wouldn’t be at choir and asking what time the performance was tonight. Worried I’d never get an answer back. I did, but then I had to IM Trevor to ask what we were singing. Then realized I didn’t know the dress code. Planning to text Jordan and ask her.

Trigger 2: Falling asleep for a nap and hearing a rat drinking from the water bottle which reminded me that both water bottles needed to be refilled first thing when I woke up which in turn reminded me of all the things around my room that needed to be taken care of (I.e. dishes to the kitchen, notes to write down, clothes to be hung up, etc.)

Trigger 3: Waking up and thinking of the rat water bottles and my room. Then thinking about the Unionaires performance and having to decide whether or not I’d go. Then thinking of how I needed to get the “room things” done in enough time to get ready for the concert if by chance I did go, which meant I needed to text Jordan.

End of story: I was so stressed out from all of it that I didn’t go to the concert or even to prayer meeting. I ended up relaxing with friends because it was the only thing I could think of to do that would get my mind off things. If I had known the future, I wouldn’t have stressed out.


1-20-08- Good example of any other normal day.

I was driving in the early afternoon thinking about how I had my whole day ahead of me with nothing written on the calendar and then I started stressing*. I was thinking of school and how behind I am and how I haven’t done any school work in over a week because I’ve been sick. So I really need to do school work today. But then I also have to clean my room and probably do some laundry. I should think about cleaning the rat cages in the next couple of days, too. And then there’s the rest of the list…

Now I feel awful. Now I don’t feel like I can cope with doing any of it. I know that if I start in on what I need to do that the tightness around my heart will gradually lesson. But I’m afraid to start because what if I don’t get enough done? And there will always be loads of stuff to do tomorrow. It’s a vicious cycle and I don’t know how to stop it. I wish the work would stop turning and give me a chance to catch up. I wish I could lock myself in my room for a week and get some things done without any outside distractions or stresses.

I feel worse writing this, but I’m glad I have because it clues me in to how horrible this all is and how I live with it every day, trying to ignore it, telling myself that’s life. Buck up and deal. You’re an adult.

Whenever I get sick for a long period of time, like I just have, it’s wonderful because I don’t have to worry about anything. I have a legitimate excuse. However, when I’m done being sick it’s awful because I have to catch up on everything and then I start thinking about how horrible my health is and how I’ll never be able to finish my school work on time and they’ll either kick me out or I’ll be in school for years to come. Then I think about how I would never be able to hold down a steady job anyway, which means I could never move out, which means I’ll never have a life of my own. I’ll always be trying to build my life only to fall all the way back down; a failure because of circumstances beyond my control.

*Note that this was not the first or only “anxiety moment” of the day. I’m usually stressed almost the entire day or I have many, many “anxiety moments”.

The Top Things I Worry About
1. School
2. Unionaires
3. Household stuff like cleaning rat cages and doing laundry
4. Church stuff
5. Money (a big part of this is Sunrider)
6. All the other stuff on my list (including writing things in my “Trigger Log”)
7. My future

All are interchangeable. Every day is different. However, the top three tend to stay constant with school being the number one thing I worry about.

1-23-08

My mom thinks I have anticipatory anxiety because I’m always worrying about things before they happen. She’s probably right. She also said that females tend to think in terms of “shoulds”. As in, I should have done this and this instead of wasting my time on that.

Today I’ve been worried about Unionaires a lot because there are so many performances and tours. It’s not that I don’t enjoy them (well, most of them), it’s the fact that they always conflict with something else like church or work (not to mention school). Now that I’m doing a lot more babysitting the whole Unionaires thing is even more complicated.

An example of the “shoulds” thing today: I went to get something to eat with James and Gina thinking a little time away from Biology would do me good. I was out for three hours and now I feel awful, even though I could have gone home at any point. I could be finished with my biology chapter in accordance with my goal for the day, but I’m only half way through and I need to go to bed. I also had to finish up this log.

My schedule is driving me absolutely insane. Seriously. Until today everything was going pretty well. We can officially add “Work” to my list of things I worry about.

1-24-08

Yesterday the pastor called me about a few things, the first which was to see how I was feeling (claiming he’d been “worried”). I knew what this meant so I replied that I hadn’t been in church the previous Saturday because I hadn’t been feeling well. I had come to church for Sabbath school, but then I’d left. The not feeling well part wasn’t entirely truthful because the main reason I hadn’t stayed for church was because it was one of those rare Sabbaths where I didn’t have to do something for the service. I was kind of ticked about the whole pastor-checking-up-on-me-because-I-missed-one-day-of-church thing because I’m accountable to so many people for being certain places on time the entire week. The last thing I need is someone holding me accountable for something optional like church. It doesn’t do much for my anxiety.

The last few days had been going really well anxiety-wise. I’d been working really hard on schoolwork, which made me feel calmer because I was accomplishing something and enjoying it at the same time. It felt like my day revolved around my schoolwork, which is how it should be. I’d been taking breaks from school to work on my other things like laundry, dishes or Sabbath school projects. While I was busier with other things than I’d have liked to be, this was okay for now.

Then my schedule exploded in a matter of 24 hours. Pastor Mike calls and wants me to baby sit for another Bible study he’s having (this one on a Thursday, one of my only free days). I say yes, though I haven’t yet agreed to do it long term. It’s tonight, though, so I’ll need to have an answer for him by then. Then one of the voice teachers at Wesleyan, Dawn, contacts me about babysitting her new baby. I’d agreed to do this a long time ago, so it’s not like there’s much I can do about it. I think I’ll probably enjoy it. I go to Wesleyan and sit in the common room or an office for a couple hours four days a week and keep her baby entertained.

So far, I have a bunch of extra babysitting dates and then I have to mark down all of the Unionaires concerts/tours. By now I want to seriously die. Most of these dates conflict with either work, church duties, or both. Now I’m just feeling like I want everyone to screw off, leave me along and let me graduate for Pete’s sake. Oh, and could I please give my animals the care they deserve? And if it’s not too much to ask, could I eat too? And maybe sleep?

Maybe I’m blowing this all out of proportion and it’ll be fine. But really, I cried almost the entire time I was writing things down in my planner and now I’m crying again. Something has to change because if this is how it is then suicide is looking just a wee bit tempting. I never asked for any of this. All I wanted was to have a slow, simple life, go to college and become a vet tech while owning a few rats and writing stories on the side. That’s all I wanted, nothing more.
I listened to this song this morning and it’s exactly how I feel:

No time for goodbye he said
As he faded away
Don't put your life in someone's hands
Their bound to steal it away
Don't hide your mistakes
'Cause they'll find you, burn you
Then he said

If you want to get out alive
Run for your life
If you want to get out alive
Run for your life

This is my last time she said
As she faded away
It's hard to imagine
But one day you'll end up like me
Then she said

If you want to get out alive
Run for your life
If you want to get out alive
Run for your life

If I stay it won't be long
Till I'm burning on the inside
If I go I can only hope
That I make it to the other side