breathing space

need some breathing space
off to napa I go...
but aren't these pictures from the friday snow fall amazing?

Lucky Number 8

I'm number 8 on the transplant list.... But there are two people ahead of me my size and my blood type so that means I will not get a call until they get lungs - unless of course I have a decline and am moved ahead of them.

BIG BIG NEWS!

So, I have some really big news to share with you all! I am officially on the transplant list as of yesterday! My quality of life is getting to the point that I think it was the perfect time.  So, this means at any point now I could get the call for new lungs! It most likely won't be for a while (average wait 6 months but I hope they come sometime in April or early May) but you never know, I know people that got the call a week after going on the list! It really just all depends on when they find lungs that match for you.  And with my size, if they found tiny lungs they could call me tomorrow!

The next step in the journey continues...

Bad Mood

I'm in like a really unusually bad mood for me today.  I was supposed to be heading to new york for a doc visit but it's going to blizzard so that has been put on hold.  This is great news because I hate driving in snow, and I was tired and grumpy to begin with.  But I'm grumpy and this is unusual.  But really it's truly super super annoying to wear oxygen all the time.  Listen, I am 27, I want to be out doing normal things.  It's really annoying to drag my tubing around, to get it caught on things, to get dressed with it, and listen the other day I stepped on the hose and it ripped off my face and I literally was just so annoyed and frustrated  I started to cry.  It hurt my ears and it really pissed me off and I wanted to punch a wall that I'm really here AGAIN needing new lungs.  And it's just all emotional and annoying and tiring.  And I just needed to vent.  You know what this means, this means I am going to shop online today because this makes me feel happy.  And my bff Lindsey might stop by and maybe watch the black swan with me tonight or at least just make me giggle.  I need giggling. 

Me and my buddy

Today I took my little mini oxygen out with me for the first time in public. It brings about a feeling of relief and anxiety. The relief comes from the fact that passerbys see that I am really sick as opposed to the anorexic thoughts that I know float through peoples heads when they see me, or the snide looks I get when I park in a handicapped spot - well trust me those stop when a 27 year old steps out of a car with oxygen on. All of that equals a lot of relief in what other people think. Why should I care? Who knows but I guess I do. There is some anxiety that comes along with it because EVERYONE looks! It's like you know that old saying: take a picture it lasts longer!

Well this is the start of me and my new buddy...

Oxygen

It's come to the point where I am pretty much wearing my oxygen 90% of the time.  It's annoying as all hell, but it does help out a bit - my lungs are so so so tired.....  Here is a picture of me tired and crabby with my oxygen on.  My eyes are barely open I know, this tends to happen a lot in pictures hahaha. 

Lung Update

I am going to try and post every day this week, I know I have been MIA.  I had a check up last week and I wanted to update you all! My weight is stable - hooray for that! My lung function is down to 28% my oxygen is level is getting a little low, but not enough to need oxygen full time yet...So as usual things are steadily declining.  I am having crazy night sweats lately so we are trying to figure out what that is coming from.  They tested me for a few different viruses which all came back negative so now we need to try and figure out what else it might be.  Night sweats always scare me because they make me think of lymphoma but it seems pretty obvious it has to be coming from some sort of infection.  I'll keep you updated! Thanks for checking in :)

Lung Update

So we've finally had some movement in my lung function - I've been pretty stable at 33% for the past few months I think, or somewhere around there.  I was at the doctors last week with one of my bffs Lindsey (who comes with me a lot so I want to give her a little shout out!) and my lung function has dropped between 29% and 31% (they used two different machines but the worst would be used if they listed me.) That means that it makes sense that I feel a little crappier and I am slowly moving closer and closer to getting on the list.  We calculated what my score would be right now if I were listed and it was 39, and most people on the list are in the high 40's (the higher the number the closer to the top you are.)  In really good new my weight has stayed at 83 pounds for months now and I am working really hard to ensure I don't drop any or I know I will be strapped down and forced to get a feeding tube - this is something a foodie does not desire! This is the update, inching closer and closer to breathing again...

Is that like Facebook?

A friend of mine is on a diet and using this website SparkPeople to add up the calories she eats everyday.  Well we had this idea that it would be good for me to track what I eat to make sure I am eating enough.  I should aim for 3000 calories a day at least.  Well I did it today for the first time and moral of the story is: I am NOT eating enough! I thought I was consuming so many more calories than I am!  I need to kick this eating plan up a notch and get higher calorie foods and fattier foods.  Hopefully I stick with the tracking, it's a little tedious.  But when I saw my friend doing it I said "is that like facebook or something?" having no idea what the website was really for.

Do you guys track your calories (those I am sure trying to lose weight) it's kind of eye opening! I thought I was eating so much more!

Sometimes family is absurd

As my friends know my mom passed away three years ago, new followers I need to let you know that before I start to have my first real bitch ranting post.  So for my first transplant my mom was my everything.  Now that I don't have her I have a small circle of family friends and my best friends that are supporting me and helping me as I go through this process again.  Now my family on the other hand, I never knew how in denial most of them are.  I've seen it over the past few months that they don't really absorb the fact that I need new lungs and chronic rejection doesn't go away.  But I had someone say today that a key member of my immediate family "thinks I am just going to get better" I'm sorry. WHAT THE FUCK is what I have to say to that.  I am NOT getting better.  The only thing that will save my life is another set of lungs.  Chronic rejection does not stop, it does not heal itself, it does not reverse itself - once it starts it just keeps going.  I am looking at probably being put on the transplant list between the next 3-6 months at the rate things have been going.  Like I have people say things to me that insinuates I might be years away from needing a transplant or I am not really that sick and I just look at them like "you're a fucking moron" I'm sorry it's not only frustrating but it's insulting.  The people that care about me and love me should ask me, or go educate themselves, and my family has already been through this once, so they have no excuse.  I don't know how to deal with it, but it's getting to a point where it's beyond frustrating and it ends up upsetting me.   It's time to get on board and support me and realize I am NOT getting better! What would you guys do? How would you deal with it in a tactful way?

Dry heaving

I've been ordered by my docs that I need to walk everyday to keep up stamina to be ready for transplant surgery when it comes.  I really hate to walk, especially when it's hard! But a friend of mine walks with me everyday to get me to do it, this is a true friend! I had an experience of throwing up a few weeks ago that involved a light bulb package, lets just leave it there, after a walk, and then today I had an experience of having to sit down on the track and dry heave - it was awesome let me tell you, haha.  Well my funny friend Laura wrote this to me in an email and it made me LOL. 

"you know what is worse than dry heaving?  throwing up into an old package of light bulbs in your
car.  Good job, i think things are actually looking up even if you don't feel like it right now" : )

True!

Lung Update

I completely forgot to update all of you on my list visit.  I am steadily declining in the same way, losing about 1% of my lung function every 3 weeks.  But the difference is at 33% you feel it much much more than at 50%.  So even though I am not losing a lot of function, I can really feel even just 1%.  I am at 33% now, and I lost 5 lbs which is NOT okay.  I got read the riot act a little bit that if I lose anymore weight they won't list me.  It's not my fault I am losing weight clearly, the more lung function I lose the more weight I will lose, that is just the nature of it when my lungs are working so hard, but I need to just be eating like a cow - all day long.  I have been eating so much since my last visit, I don't want any reason for them not to give me new lungs.  I think yesterday I ate 20 munchkins, haha.  And you will see lots more high fat cooking of things I don't usually cook (i.e. I don't really bake.) because I really need to at least maintain my weight.  I am back on the 21st.  And the journey continues...

For myself

I am writing this post basically to myself.  I want to remind myself how hard it is to breathe today, and how short of breathe I am and how crappy I feel and how much I hate it and how much I can't wait to just breathe and be normal and do everyday things again.  I want to be able to read this when I am up at night scared of having another transplant, scared of the process, scared of the waiting, the unbearable pain, and everything else.  I just need to remind myself how hard today is because it makes it harder to be scared. 

Perspective and Patty

Growing up I only ever had one friend that had CF, her name was Katelyn and she died when we were kids.  I still think about her a lot actually.  They kind of don't want one CF kid hanging out with another CF kid because you're commingling germs.  Well, after I got my first transplant my old middle school teacher, Gerry Teja, contacted me that her son was dating someone with CF and she was on the transplant list and she thought it would be really neat to pair us up.  She felt we were really similar and would really hit it off and maybe I could help Patty (her name) with the transplant process.  Soon after I met Patty and we hit it off right away.  I've really never met someone who I could just instantly relate to so easily and we became fast friends.  Well I've known Patty now for maybe 5 years and I haven't seen her in a good year which is tragic - so yesterday we spent the day together.  She has not had a transplant and is still puttering along with her CF lungs quite well, but it's rather interesting to me because we have the same exactly lung function right now.  And to her, she is doing really well, and to me I feel like such crap.  I thought about it a lot on the way home last night.  How she herself will tell you that she is doing so well and she feels so great! And as she says this to me yesterday I think in my head how awesome that is, but then I also think, you only feel that way because it's all you know.  Having 35% of your lung function working is as horrible as it sounds, it sucks! And I can't explain to her what it is like to go through an entire day and never once think about your breathing.  I mean I just can't explain to anyone that hasn't been there, what it's like to go from not being able to breathe, to being normal and I just really cannot wait for that day to come for her.  I hope she stays at her 35% for a long time and won't need a transplant, but I really cannot wait for that day when I can sit with her and she has healthy lungs and I can see her not struggle, even though she doesn't think she is struggling, I can say she is because I've been to both sides.  She just so deserves to know what its like to be normal and really live.  Don't get me wrong she is living, and she is living well, but it's only as well as she can with sick lungs, it's NOTHING like being able to breathe, nothing.  In a way I wish everyone could just feel a few minutes of what it's like to have really shitty lungs, it would just give you this perspective that I can't find the words to explain.  I mean it must be like how someone who can't see feels when they can see again, or something like that.  I read this story about this lady that went blind after taking a medication that she had a bad reaction to and she was blind for 33 years and then doctors were able to restore her site, she must go through her days knowing this little secret no one else knows, having this little perspective no one else really has (expect for those that have experienced the same thing)  That is how I feel, I just have this little perspective in my head I really wish I could explain to everyone.  But in any event, what I really wish is that one day Patty knows what it is like to walk out the door and spend an entire day thinking about everything else besides her lungs.  There is truly nothing like it. 

Lung Update

I'm going to try to update now every time I go for a check up during this retransplant process.  I go every 2 - 3 weeks now.  Yesterday it was hot as an African safari in Manhattan! 108 degrees! One of my best friends Lindsey came with me, which was really nice.  There were not a lot of people around for any of my tests so we didn't really wait much.  I have the same routine every time I go.  I do: blood work, chest x-ray, pulmonary function tests, and then bring all of those test results (well not blood work) to my transplant doctor and we discuss where I am in my decline.   We waited awhile once we got to the transplant floor and seriously the AC was not working on the floor and it was hot as anything! All of my numbers had pretty much stayed the same from two weeks prior.  My lung function is 36% and my weight is 83 lbs, so we didn't really have that much to discuss, since that has stayed pretty constant all month.  It seems like I generally take a dip once a month in lung function.  In my head I think I'd feel comfortable going back on the transplant list when I am in the high 20's, by then my fear of dying I think will trump my fear of another transplant, which is sort of what I am waiting for before I go back on the list. 

Be thankful for breathing

There are two parts to this blog: breathing and butter.  I have sort of steered clear of the breathing part, because I think it's really hard for me to open up about that, but one of the reasons I started this blog was to have a place to open up about that and I place to find support in my second transplant process.  If I want that I need to start blogging about it and sharing this experience with you all.  So let's recap: I had a lung transplant 6.5 years ago, due to end stage cystic fibrosis.  I was diagnosed with chronic rejection in my transplanted lungs awhile ago, maybe a little more than a year ago.  This basically means my body does not want these lungs anymore, and because of this they are slowly turning to scar tissue.  My airways are slowly become scarred and making it harder and harder for me to breathe.  The only way to solve this problem is another transplant.  A few months ago I completed all the testing to get back on the list.  I am not back on the list yet, but I get closer and closer to that point as time goes on.  Right now I have 38% of my lung function left.  This is really starting to make life harder for me.  Doing pretty simple things take a lot more effort and because of the build up of more and more scar tissue I am starting to cough more and more when I do things.  And because my lungs are literally using up every calorie I take in to just function I'm down to 83 lbs.  I have to explain that this time around is much harder physically than the first transplant, because now I know what it is like to go through a day, and do anything I want and not think about breathing.  I never knew that with my old lungs so that made it a lot easier.  I think it's really important during the process for me to explain to all of you readers how lucky you are to literally do the simplest of things: wake up, take a shower, go to work, run errands, literally mindless things and not ever once think about your breathing.  I'm conscious and aware of my lungs pretty much with everything I do now.  Most people really take breathing for granted, and I want you all not to do that.  I want you all to realize how blessed you are to go through a day and not give it a second thought.  This is really important to me for all of you to know that.  I know even when I got these lungs I took for granted how easy it was to breathe and I lived for nineteen years being aware of every breath, so trust me I know how easy it is to take healthy lungs for granted....but for me, please don't!  

Cooking on hold

All of my cooking has been on hold for a few days and it is killing me! I didn't even realize how much I love to cook! I have been having SEVERE stomach pain after I eat the past couple days and I do not know why.  Tuesday I had a check up with my transplant doctor, and I had an ultrasound on my belly - turns out I have gallstones.  EEK.  But this may or may not be what is causing my pain.  I will go back for an endoscopy to check for ulcers and to see if my fundoplication (aka stomach wrap) is maybe too tight.  But I really miss cooking so much.  So today I am going to cook anyway even if I can only have a bite.  In other news my lung function has held pretty steady around 40% the last few months which is good news! So I am not back on the transplant list yet....even though a small part of me wants to be.  I can't explain it, but now that I know what it is like to breathe normally my tolerance is pretty low when I get short of breath or cough or struggle.  But at the end of the day the more time I get out of these lungs the better...

Hi!

This is going to be a blog about breathing and butter. And by that I mean living and everything that includes, and a lot of cooking! Stay tuned...