Can't Fight Biology

A few updates.  I was told that I am above 80% of the people on the lung transplant list nationwide.  This is good news and means I am right up there for a pair of lungs.  Just waiting on one that is my type and my size.  Being as small as I am (4'10") it can sometimes be hard to come by lungs that will fit in my chest cavity.  I just have to be patient.  Physically I am starting to notice increased coughing and I had a fever yesterday...

Merry Christmas All

I hope everyone enjoyed their holiday.  I was able to enjoy most of Christmas and the few weeks before hand.   It was a good time to go into the hospital and still be able to get out and enjoy the season.  My health did limit what I was able to do this year, but I did whatever my body would let me.  I took things easy and for the most part it was nice.

With a Little Help from My Friends

Well I am back in the hospital.  No real surprise there.  I came in Friday the 30th.  It seems like I end up in here every 4-6 weeks.  This was a little early but I was struggling to sleep through the night and breathing was getting harder and harder.  I also didn't want to wait and come in as bad as I was when I came in last time.  That was extremely uncomfortable.  This hospitalization has been much more pleasant than the last one.  I had a few rough moments and nights.  That is expected… I am in the hospital....

For Thanksgiving Memories

Funny how everyday seems to be the same.  Then you look back a year, or even a few months, and so much is different.  The changes are normally so subtle they go unnoticed and then bam, the realization of how different it is kicks in.  Sometimes the life changes are good and sometimes they are bad.  When it's bad giving up should not be an option.  Things will change again.  If you give up now, there will be no experiencing the good things in the future.  Nothing is forever.  The only constant in life is change.

Raindrops Keep Falling on My Head

On Saturday the 27th a friend of mine came up to see me just to hang out and catch up. It had been awhile between me being so sick and her being busy with her kids.  It was really nice to catch up with her.  We watched a few movies, had taco bell and just talked the whole day.  I had a few coughing fits when she was there, but nothing too serious.  Luckily it wasn't a bad day.  Sunday was a little rougher and I needed to keep switching between the cannula and the mask for O2.  Then Monday morning I was OK so I did my stuff and just took it easy.  I waited for my dad to get out of work to take me into the hospital. By the time he got there I was starting to have a hard time breathing.  I was so exhausted even though I did nothing.  He took me into Children’s and headed home.  I now wish he hadn't left so fast because this was the worse admittance I have ever had!

Dilemma

Yesterday I had my follow up doctor's appointment in NYC.  I had to struggle a little over the week to make this happen.  I was not feeling well again, but did not want to miss this appointment.  My last appointment was April 17th.  I missed the one in July because of being admitted and I didn't want to miss another one.   Another thing I did not want to do was cancel my flight.  So I did what I needed to do to in order make it through the week and get to this appointment.

Broken

I am falling apart.  I am trying so hard to keep myself together here, but it seems like no matter what I do I can't feel good.  I don't like to complain, but this is getting to be too much.  Not only for me, but for my family too.  I can barely do anything for myself so I constantly have someone doing something.  They are all constantly worried about me and that gets to me too.  I don't like seeing my family upset.  I know it is inevitable  because they all love me and hate seeing me in the condition I am in.

Up, Up and Away

Wings Flight of Hope is the organization I am set up with to take me for my transplant.  I assumed I wouldn't talk to them until I got needed them to fly me for the actual procedure.  Well shortly after my benefit my mom got a phone call from man named Joe.  He runs the organization and heard about my benefit.  He wanted to let us know that they would take me to and from my doctor’s appointments in NYC.  I was so happy to hear this because with the increase in oxygen use, traveling is getting more and more difficult.  I called them back and I have my first flight scheduled with them on October 19^th!  

Rock This Town

What a busy week!  On the 22nd we had the benefit. I spent a few days recovering from that benefit, and at the same time had my brother here with me for a few days.  I knew Friday and Saturday were going to be busy days.  I thought I knew what to expect, but more was in store for me than I knew....

The Motivation Proclamation

I was admitted into the hospital on Monday the 10th.  I am starting to notice a change in how I feel, but it is going slow and I am still a little out of it.  I would have updated sooner, but I have been so tired and didn't have the motivation to do much at all.  To be honest I am still having a little bit of trouble with getting myself to do anything.  I am tired, I am winded very easily and the motivation is just not there.  It is weird though because I am getting antsy and I want to do something, I just can't think of anything I feel like doing.  Interesting dilemma right?  Before I came in I was thinking about getting everything together for the scrapbook I am working on and bringing it with me.  I am slightly happy that I didn't bring it with me because it would just be sitting on the table untouched and then I would have been mad at myself.  It has just been one of those weeks and I am happy it is almost over....

Rollercoaster

I feel like I am on a roller coaster ride.  My health is up and down, up and down.  Not just day to day either.  I can be fine one hour, then feel horrible the next, then fine again.  It is extremely frustrating.  It makes it even harder to plan and do anything.  I know all about day to day, but seriously!? 

We are Family

Today was a very enjoyable day!  I went over to my Aunt's house to help with some baskets for the benefit. I thought only a couple of us where going over there, but when I got there it was a full house!  A bunch of my extended cousins were over there too.  There was me, five other adults, three teenagers, and four little ones.  I was surprised, but happy to see everyone.  Some of them I hadn't seen in years.  Of the four little ones, two of them I had not met yet.  So it was really nice to see everyone.  I am finding that this is my favorite part of the benefit.  I am seeing and hearing from people I haven't talked to in years.

Two is Better than One

Today marks Jason's and my 9th year anniversary.  It is crazy how time flies.  We have been through a lot.  These last couple of years have been challenging.  With me getting so sick life is not easy.  This is not something that people in their twenties should be worried about, but he is right here standing by my side.  Not only is he here to help me with things I can't do right now, he is also there to support me through all this.  He not only involves himself with my medical stuff, he knows everything about it.  He goes to the doctors' with me, he knows all their names, what they do, what meds I am on, what the meds do and how they work.  He is also on top of the drugs that are still in the research pipeline.  If there is something I am not sure of I just have to ask him.  He is my rock and the reason I wake up and fight every day.

A Cabin in the Woods

Camping was a lot of fun.  We all had a good time and needed to get away for awhile to unwind.  It was so nice to be able to catch up with my two best friends.  With the two of them going to school in different areas and me being sick, we don’t get too many opportunities where we are all able to do something together.  We didn't need to go anywhere too fancy.  All I wanted was to spend time with my three favorite people.

Home for a Rest

Well I am finally home.  We decided it didn't make sense to come home on Monday and do IV's for two days.  It would have been too much of a hassle.  I would have to get the meds delivered, pay all the medicine co-pays and then arrange for a nurse to come out to de-access the port when I was done.  So I didn't mind staying just two more days to avoid all of that.

Up All Night

It looks like I will be going home on Monday.  I could leave Friday if I want to, but I am still winded too easily.  Going home and taking care of everything myself will be too difficult at this point.  I am going to let the nurses take care of me so I can concentrate on relaxing and getting better.  My coughs are still a lot harder than they normally are.  I get stuck in them, turn red and feel like I am going to pass out.  I get light headed, the room gets spotty and my body feels shaky and tingly.  This happens to me sometimes, but right now since everything is moving, it is happening multiple times a day.  I go into coughing fits just from transferring from the bed to the wheelchair.  This is probably the worst part when I come in here, but it is a necessary evil.  All the mucus that has accumulated in my lungs is breaking free and plugging up my airways.  It makes it harder to breathe, but it makes it so that it can come out too.  Once I get most of it out, I shouldn't go into coughing fits so frequently and then hopefully start to feel a little better.  Plus I am not even bored here yet.  Believe it or not I have lots to do and have actually been busy.

In the Midnight Hour

The last couple days have been rough.  It has been harder to catch my breath even when I am just sitting on the couch.  My coughing has gotten a lot worse and I have been very congested.  I have just been taking it easy and trying to make it until Monday.  I called Lisa (she coordinates everything at the lung center) on Tuesday and told her that it was time to be admitted.  I suggested Monday so she said she would have all the paperwork ready and I could just go in.  I wanted to wait because Jason's family reunion is Saturday and I wanted to be able to go.  I have not been able to go the last two years because it just happens to fall right when I have to go in.  So I thought I would try and make this one. Well as you can see by the way I am talking in the past tense...my lungs had another idea.  Last night I started coughing up blood and Jason took me to the ER.

Proud to be an American

Hope everyone enjoyed their Fourth of July!  I personally did.  I surprisingly had a very good day yesterday.  I knew it was going to be a hot day so we came down to visit family and enjoy picnics and the fireworks.  We came very prepared.  I brought along my portable liquid oxygen and attached it to my electric wheelchair.  I also brought along my POC as a back up just in case I ran out of O2.  Luckily I ended up not needing any of it.  I got a fever half way through the day, but after I took some Motrin I felt alright.  I was comfortable for most of the day and was able to breathe.  I couldn't walk more than a couple feet without getting winded, but as long as I was in the chair I was fine.  That made for a good day and I am thankful for that.  Definitely happy I was able to enjoy the day with family.

Benefit Information

Like I mentioned before, my family is putting together a benefit for me to help with the expenses for my upcoming double lung transplant.  This is going to help with all the expenses that go along with getting this transplant.  The surgery itself is paid for by insurance, but we are not getting any help with any other expenses.  Right now I have to keep going back for follow ups and tests every three months.  When I have the surgery itself Jason has to live there while I am in the hospital.  After I am released I am going to have to travel to NYC once a week for appointments for about 10 to 12 weeks.  We have also heard of a few additional costs that might happen.  We have planned as much as we can, but there are always things that you don't expect and we want to be as ready as possible.  We went to the bank today and opened up a separate account just for the transplant.

Drowning on Dry Land

I am not doing good heath wise today.  I started getting fevers a few days ago so I called for an oral antibiotic to try and help with it.  Also I started my nebulized Tobi yesterday.  I take that 28 days on and then 28 days off.  When I start that it really takes a toll on me, especially if I am already having a hard time.  Today is pretty bad though.  I am on oxygen and it still hurts just to breathe.  My Albuterol is not helping me either.  I can normally take a puff or two of that and feel a little better.  Today it is not doing anything for me.

Fallin' & Flyin'

These last couple weeks have been great.  I have a lot of energy, breathing decent enough to do things, and very little aches and pains.  The last time I came home I didn't get this boost in health at all so I am really happy to have it.  I don't know how long this is going to last...I am sure not long...but I will take whatever I can get.  I am trying to complete a few projects that I normally don't have the energy to do, and visit with friends and family.

Man, I Wanna be Productive

I came home Friday and was on antibiotics until today.  My doctors wanted me to do a full two weeks of antibiotics.  I would have just finished it at the hospital, but I really wanted to be home for Jason's birthday.  He took a half day for his birthday so he picked me up and we went to Family Video.  We rented Men in Black and Men in Black II.  The third one came on his birthday and we wanted to go and see it after re-watching the first two.

Approved for Listing

I got the phone call on Friday that I have been approved for a lung transplant!  I am not on the active calling list yet.  I wanted to wait and make the announcement when that happened, but it is taking a little while and I wanted to let you all know.  They are still awaiting financial approval.  When that happens I will get a call and have to give them a few numbers where I can be reached.  This is for when the lungs come in. They no longer use pagers if the person has a cell phone.  I was just told to keep it on, charged and with me at all times.  Right now I am in the process of getting setup with some organizations to fly me over to NYC when the call comes in.  I have a window of time to get there (which I am not sure exactly what that time is yet) so I am working on those arrangements. I will post again when I find out more.

One of Us

I was raised Catholic.  I have been baptized, did communion, and I am confirmed.    I have always questioned the things I was taught ever since I was little.  I went to religion every Sunday and I remember my religion teachers coming up with answers to some of my questions.  Some of them satisfied me, but others just left me with more questions.  By the time I was in Middle School and High School I was really skeptical.  I realized at an early age the bible was flawed and if there was a God he would be completely against this bible. The bible was not written by him.  It was written by humans and humans are flawed. There are so many contradictions in the bible that if you tried to make sense of it, it would drive you mad.  The contradictions also lead to the problem of people being able to interpret it however they want.  Another problem I have with it is that it has been rewritten so many times over thousands of years who knows what the original ever said.  Just like the telephone game in a classroom.  The end sentence is nothing like the original. Think about that.  That statement has been repeated about twenty times in the time frame of a few minutes.  What can happen to something over thousands of years?

How to Save a Life

This hospitalization has been pretty uneventful.  Wednesday was not a good day for me at all.  I had a nasty fever all day and it just wiped me out.  I lied around all day and slept.  I didn't even have the energy to go on Facebook.  I did feel a lot better on Thursday.  I was still on O2, but much perkier.  I spent that day catching up on some TV shows and getting a few tests.  I also did a few other things I wasn't able to do on Wednesday.  I went on the internet, talked to a few people to let them know what was going on, took a shower, and then before I knew it, it was time for Grey's Anatomy. lol  So now that everything is caught up there I figured I would blog a little about my hospital stays.  I have seen that in my last posts I never really talk about being in the hospital so I figure I will give a little insight...

Winning a Battle, Losing a War

The bugs have won and I am back in the hospital.  Well technically they lost because now a majority of them are going to die, not exactly smart these one celled organisms.  I got pretty sick last week and I have been on Levoquin, but it didn't kill enough of them.  I think I waited too long to call for it.  Levoquin really took care of a lot of the infection, but just not enough to make me feel better.  I will have to get it faster next time.  One day I would be fine and then the next I wouldn't be.  It was even hour to hour.  I would feel horrible, then feel fine, then feel horrible again.  I got tired of it and decided to just come in.  Why sit and suffer for a few weeks?  Yeah I am coming in more and more often, but I would rather sit in here for a week and have a couple good weeks, then sit and struggle for weeks on end to eventually end up here anyway.  Plus I might as well be here when I feel like this.  I can't do anything or go anywhere.

Yes, I'm Ready

Jay went out with some friends tonight so I figured it was a good time to write a little.  A friend of ours is moving to Virginia and having a going away shindig.  Tonight I am really not able to go out.  I am bummed by this because I would like to see her one more time before she leaves.  However she came up to see us last weekend.  We all went out to eat and watched movies.  So at least I was able see her and hang out with her for a little while.

Chariots of Fire

So there are a few things to talk about.  On April 26th I switched to liquid oxygen instead of using an oxygen concentrator all the time.  I also went to NYC for my last two tests and should know shortly if I am going to be listed.

Life During Wartime

On April 16th we left for NYC for another appointment.  The trip started out nice.  On the way there we saw this really pretty rainbow.  Maybe it’s a sign of what's to come.  The next day was my birthday so it will be a good day right?  Luck should be on our side.  Nope it was the complete opposite.  This trip came with many obstacles.

Educational Seminars

Jay and I went to NYC this week for two educational seminars.  They require we attend twelve a year.  Before this we have not attended any due to the timing of these and my appointments not lining up.  It is not easy or cheap traveling to NYC so traveling just for a seminar is too much.  Especially with my health declining.  Jay had to be in NYC for work so I went with him this time in order to go to these seminars.  They do two back to back so two down.  I am happy we made these two because they were very informative.

Don't Give Up

Well last week the place I worked officially shut down.  I am upset and happy about it at the same time.  I am upset because it was perfect for me.  I didn't care for what I was doing, but it was a job that paid money and allowed me to stay at home.  This is important for me because I have gotten too sick to be able to go out to a workplace every day.  I am going to look and see if I can find something small at home to make some money, but I won't be too devastated if I can't.  I am a little happy about it due to the fact that I can spend more time taking care of myself and maybe getting back into some of my little hobbies.  Between taking care of myself and working, I didn't have the energy to do anything else.  I have some moments when something is going on.  For the most part though I am sitting at home doing something health related or laying around relaxing due to lack of energy.  I try and do what I can when I get the chance, but I honestly can't wait until I have the energy to actually do things again.