Lungs in a bag, anyone?

 

What's up my bitches?

Wow, what a week so far. I'm tireder than all hell. I've been to Chapel Hill and back 2 times this week. AND I have to go again next Friday to see the transplant team. ughhhhh.

Tuesday morning I had an appointment with the sleep specialist in Neurology at the main hospital. I don't know what I expected her to tell me, but it wasn't what I heard. This lady is crazy.

She gave me a list of rules which consist of (no specific order): Lights out at Midnight - What the hell? Am I band camp? Do I need to pull out my clarinet from 6th grade? She is trippin'!

NO naps! (unless I absolutely can't stay awake) Is she mad? That's like telling a monkey not to eat bananas - it's in my nature.

No T.v. or computer after 11 PM. OH MY GOD - She is the devil! I think she is purposely trying to ruin my life.

The last one - and definitely the worst. NO CAFFEINE...which means, *TEARS* NO PEPSI!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She might as well rip my heart from my chest and laugh at me as she throws it down and stomps on it. That's how bad it hurts. Granted - I can drink caffeine free Pepsi  and I WILL - but its just not the same.

I'll go along with her little scheme - for now. But I'll be damned if I don't drink a regular Pepsi every now and then. What is it they say? As long it's in Moderation, it's okay? :) What she doesn't know won't hurt her!

She also gave me some pills to take, hopefully they will help.

Last night Justin and I took his Mom's car back to Chapel Hill to go to support group. It was pretty interesting. The transplant surgeon (Dr. Egan) who started UNC's lung transplant program was there speaking on his research.

They are doing research on Ex-Vivo lung transplantation. Which means they would be taking lungs from non heart beating donors - meaning those who arrived at the hospital D.O.A. or die at the hospital b/c their heart stops beating and can't be resuscitated. They believe that it may actually be better than brain dead donors b/c brain death can cause damage to the lungs. But lungs after heart death, still oxygenate (unlike every other organ, b/c the other organs depend on blood pumped from the heart to the organs - but the lungs don't)

It was very interesting. Dr. Egan is brilliant. There were a couple of videos we saw that were awesome. Below is the website that explains his research.

Lungs In a Bag

I have a headache. I'm going to get off this badboy. Talk to you laters!

Introducing the Transplant Fairy

 

Greetings and Salutations y'all!

Today I have officially been on the waiting list for 4 months. *applause* Yippe- freakin'- skippy! It's also my friend Bree's 7 month mark for being on the list. So at least I know I'm not alone in this long ass journey.

I finally drew the long awaited picture of the Transplant Fairy. Ready to see it? *Drumroll* Now - Introducing the Transplant Fairy .........................

So what do you think? I need to get a flesh colored marker so I can give her some skin instead of just plain white. But, oh well. It works for now. :) I also put her as my profile pic on Facebook.

I drew her earlier this week over at Justin's house when I went over there to hang out. I took my stuff and we sat in the living room and drew for about 3 hours. He drew one too. His was better than mine. The boy has talent and didn't even know it! :)

Yesterday morning, My mother and I went shopping for Christmas. I got some cool stuff. I got three new purses, but I bought one of them myself. But she bought me an awesome Nine West one for Christmas and another one that is a clutch. Plus some other stuff, including boots and a mp3 player. So I should be set. I still need some new jeans b/c I've basically out grown all my pairs almost. I guess we'll go to Express next weekend or something and get me some jeans.

Life is still stressful over here in my neck of the woods. Tomorrow Julie is picking me up and I'm going over to her house for a while to just hang out and de-stress as she works on some craft projects and watches football. Should be fun!

Well, I'm off like a prom dress.

Concentration Camp di Bumgardner. - My personal Holocaust!

 

Hey Y'all.

I know it's been a while since I posted, but I just haven't really been in the writing mood. I've been more in the "donkey punch someone in the face and kick them in the balls", mood. Things around here have been total bullshit lately. So much drama, it's really starting to wear on my damn nerves.

My parents are acting psycho and treating me like I'm 13 years old. Just because they don't like my ex, they are trying to control my every move where he is concerned. Not only has my step dad threatened to shoot him if he comes in the driveway (which I'd like to bring to everyone's attention IS illegal and makes him subject to arrest for Communicating Threats.) But come to find out, my step dad also actually must own the street as well, *sarcasm* b/c now I find out that my ex isn't even allowed to come park in the street to come pick me up.

But - it's not even about the ex really. That's just the icing on the cake. They think that because I'm living under THEIR roof, they have the right to treat me like a 13 year old. No leaving the house past 9pm, no hanging out with someone they don't like, no selling my car even though It's in MY name. (at least they eventually gave THAT one up) Those are just a few examples.

Could someone please remind me of when I fell asleep and woke up 13 years old again? B/c the last time I checked, I was 28 years old. I can't take their immature ignorant stupid shit anymore. Pretty soon I'm going to blow and it's not going to be pretty.

What makes this even worse is that right now is supposed to be a relaxing, stress free time as possible. I'm waiting for a transplant. A transplant, I might ad, that is a very risky surgery, which there are no guarantees afterward that I will do well. I want to live my last months until my transplant as happy as stress free as possible. I should be able to see who I want to see and not worry about being emotionally punished and/or getting kicked out of the house because of my choices.

I've been sick for the past 16 years of my life. I'm finally an adult. I've been doing what I want and making my own decisions for YEARS now and I've done fine. I'm not saying I haven't made mistakes, b/c I have. But that is part of life and part of growing up. I've still done pretty good. I got through college living away from my parents and supporting myself for the most part. And now that I'm down on my luck and unable to live alone while I'm waiting for this life changing event to happen, they choose to kick me while I"m down and treat me like a unruly teenager. I feel cheated and betrayed by them and I'm so mad I could scream. (And I would if I had the breath)

I feel as if they don't care about my feelings at all. And if they did, they would try to understand where I'm coming from. They would at least try and  compromise with me. But NO, they want total control. And all I hear is about how god awful and miserable I'm making them. I mean HOW DARE I have the nerve to actually want to make my own decisions! How dare I have the nerve to want to control my own life!!! HOW horribly selfish of me!!!!! *sarcasm* Don't I see how upset this is making THEM? What a horrible daughter I am to do this to my parents!!! *more sarcasm*

They want me to understand them, but yet they REFUSE to even listen to what I have to say. They don't even attempt to put themselves in my shoes!

They think I don't understand where THEY are coming from but I do. All I'm asking for is a little consideration. For them to try and understand where I'm coming from for once!

I don't doubt their love for me and their need to feel like they are protecting me from who and/or what they feel is harmful to me. As my parents, their job isn't to control me, and keep me from making mistakes. Their job is to LOVE ME and SUPPORT ME emotionally and be there for me if and when I need them.

Unfortunately, I've realized recently that the truth is they don't give a flying fuck how their mistreatment of me and their actions make me feel. Just as long as they get what they want. Which is to be in control. Even at the cost of my happiness and health.

The transplant team says one of the most important things a transplant patient needs is a support system. They need their family and friends their to give them emotional support through out the whole process, PRE and post transplant.

I'm starting to really feel as if I lack this important support system. If they are treating me like this now, how are they going to treat me AFTER I get my transplant? When I'm (god willing) able to to get around even better and go and do as I really please? If this is any preview of what is to come, I'm in a shit load of trouble!

And due to my parent's vehement refusal to even DISCUSS a compromise or talk about how to solve this Hitler-Esq "Control issue" they have with me, I don't see an end to this personal holocaust I'm living in.

My life right now is a living hell and the culprits - my parents- the ones to whom I should be able to turn to with my problems - don't even care.

I just want it all to end.

Top 10 Things I've learned from Bronchiectasis

 

Transplant Fairy, OH Transplant Fairy, where for art thou Fairy? Bring forth thy lungs and restore thy life! *sigh*

No lungs yet y'all! Do you think that maybe the Transplant Fairy is a selfish fairy? Perhaps she requires some sort of...gift in advance before she bestows on me this gift that I so humbly beg of her?

OR - oh no...what if she requires some sort of....sacrifice? Maybe she expects me to give up something in order to get my shiny new lungs?  *scratches head*

OH well, if y'all have any suggestions, let me know. B/c I'm shit out of ideas here. And getting more impatient by the day. When will it be MY TURN?! I've been patient. Or at least I think I have :-(  Is there some life lesson that I'm supposed to be learning through this waiting thing? B/c if so, I think I've learned enough lessons over the past 16 years of this selfish bastard of a disease.

Let's explore what I've learned over the past 16 years.

Bronchiectasis has taught me.....

1. Just because you FEEL like you can do a certain task, it doesn't necessarily mean you CAN. Slow your roll! Try, but don't be disappointed with your ultimate failure.

2. Nosebleeds aren't as bad as everyone makes them out to be. In fact they can be rather interesting at times.

3. No you don't have a big booger on your face, they are staring at your oxygen.

4. Do not under any circumstances follow any urge you get to skip, run, or hop. (refer to #1) B/c you will just embarrass yourself. And possibly hurt yourself.

5. Keep your oxygen cord away from kittens. They WILL attack it. they can't help themselves. It's not pretty walking around with a oxygen cord full of electrical tape.

6. Just because your Lungs can, doesn't mean your LEGS can. Once again, SLOW YOUR ROLL! The treadmill will be there tomorrow and the next day, etc.

7. Yes, it IS possible to blow O's from your nebulizer pipe. Although it may take years to perfect.

8. Don't throw away your left over oxygen tank humidifier bottles or extra cords. Pot heads are very creative. (this is only for those who have friends/family who partake of nature's own medicine)

9. Don't overreact. Coughing up blood does NOT mean you have AIDS. No need to take a trip to the free clinic afterall.

10. If someone asks you if you have Asthma, for the love of God, just say YES.

(possibly more to come later)

20 miles from home + Empty O2 tank = OHH CRAP!

 

What's up Y'all.

Yesterday was an interesting day. It was bad b/c I had to end up canceling my rehab b/c I had to leave town early in order to make it to Chapel Hill in time for the support group meeting. So that sucked. I tried to reschedule it to an earlier time so I could make it, but they didn't have an opening.

SO anyway, we ended up leaving around 3:30 to drive up there, which is good b/c it took us like 2 hours to get there by the directions given to us. We barely had enough time to go by Subway and get dinner.

But, the support group meeting wasn't near as horrible as I thought it would be. Thirteen years ago when I was attending them, I hate them. I resented that I had to go to them b/c I felt like I didn't belong there. I wasn't getting any emotional support from being there. It only made me feel worse like an outsider b/c all the people there were so much older than me. And the way they talked was like everyone was competing with each other. I hated it. So that's why I was not very excited when I got "summoned" to last nights meeting by the woman that runs it.

But, I must say, I was pleasantly surprised. Granted, there wasn't that many people there last night. But there was one girl there that is 26 who has CF and just got listed for a double lung transplant. And then there was this 29 year old guy there who had a transplant in March. Plus a few others that called in on the conference speaker phone line. So it was cool. I felt less nervous and not like an outsider like I did when I was 14 and 15. So that was a pretty good time.

BUT of course, there had to be SOMETHING that went wrong. On the way home I ran out of oxygen. It wasn't my mom and I's fault. I won't go into how it happened or why, but suffice it to say, we were pissed when we got home. I had to go the last 10 minutes home without 02. and it was NOT fun. :-(

But, once in the driveway, I finally got some o2 and got inside okay. A few minutes to relax and rest and an ice cold Pepsi later, I was recovered. :)

Okay Kids, the moral to this story is, well I'm not sure what the moral is rather than "Don't run out of oxygen." but that's not really a moral b/c it wasn't something that we did intentionally. Hmmm..anyways! I'm off!