Saturday, March 31, 2012

Where Does Sleep Go?

Once again I find sleep is not exactly my friend. Might I once again blame predinose, or maybe it's they took me off my anti-depresent which was a nice drug because it helped me sleep and made me hungry - as if that was a problem. In any case, I hate waking up in the middle of the night only to find that it really is the middle of the night, as opposed to say 4 or 5 a.m., all though as of late it doesn't matter what time of night I am awakened I just know that I can't fall back asleep. Mostly I end up wide awake and thinking about laying a brush to canvas, if I were actually up painting I would probably have three more paintings under my belt, of course I would also have a re-decorated house and a book done and ready printed for all my mind has done these nights I wake up.

The other night I decided just to take tylenol and get it over with rather than lay there and fight the ugly fight, it worked...for a couple hours.

Speaking of books, I really need to focus more on writing it. I have been bad lately sitting down to pen my memories, not that I don't have them as I have had more flash backs of the vent unit lately then I probably care to. But yet I always think how lucky I am to be on this side of it, so then I appreciate the time I was on the vent, if that makes any sense. As I no longer have the trachea scar I feel more removed from that situation, but I certainly will never forget, it just fades like my scars and occasionally I get a glimpse in the mirror and remember for a second then move on.

So, did I mention that I tried riding a bike on Tuesday up at REI. I guess riding a stationary bike does NOT directly relate to riding an actual bike. Thankfully Chris is strong enough that he held the bike up right as I tried to traverse a straight line. Needless to say, it will be awhile before I find myself cruising down the sidewalk toward Silver Lake. Guess lately it's been hard enough just to walk a straight line, not sure how I thought I could attempt it on two wheels.

Have I also mentioned I am thinking about doing another blog. Not sure what to call it, but it will be food related - at least at this point. As if the world isn't plagued enough with food blogs. I have had great success making my own recipes as of late so I thought I might share, the only problem is I seem to throw in a little of this and a pinch of that so I don't really have adequate amounts. I will have to remedy that. I could also do a blog that's all about my creative outlets. I don't know yet, but I suppose I should as promised try to make this blog a little more artsy and exciting to look at before moving to a second one - nah, that doesn't sounds like me, too many things at one time and not focusing on one that's how I roll.

So far this morning has gone not as planned but I have accomplish a blood draw at the clinic, a load of dishes, a care pages update, a blog update, and unsuccessful lease deal on a car, and made mac and cheese yet I still haven't showered. Where are my priorities? Oh that's right I woke up at 5 a.m. with a headache the size of Texas, it's amazing I even got clothes on to head to the clinic. I was to go color eggs but haven't gotten there either. I better run and get this day going, it's already been backwards. It would be nice if I could get to Gma and Gpa's before Kai wakes up, love when that little boy comes out from a nap, that smile yesterday could have brightened the cloudiest day.

Happy weekend!

Wednesday, March 28, 2012

Traveling Tuesday

I am still trying to get used to working on my MacBook Pro as opposed to my iPad. At first I found it difficult to not touch the screen on the MacBook as that is how one navigates the iPad, so after a few finger prints on the screen and either laughing at myself or shaming myself I have finally stopped touching the screen. Now my problem seems to be which lovely program am I going to use for desired project. Case in point, I usually use Blogger on my iPad to write my blog and not that I still can’t as I am a pro at using the iPad keypad  but it is much nicer to type on an actual keyboard, so I switched over to the MacBook. So, then where do I write, directly on my blog site or in Word and then move it over. I decided to use Word, and wouldn’t that be nice if this was the toughest decision of the day?

I spent my whole day at the clinic on Monday, and Tuesday was the first day in over a week that I haven’t had to be up before the sun for my daily blood draw, my hemoglobin has been telling them slowly they are sucking me dry, vampires! On the up side my WBC is higher then we were aiming for – of course, I went from .5 on March 18, to 9 on March 26 or rather we can look at it from 500 to 9,000.

I also learned Monday that I once again have more questions than answers.

Tuesday was a busy day, ended up heading to the Twin Cities. We were busy in the morning so we didn’t get going until after 1:30, which many of you may know that before the days of my new lungs the afternoons between 2:00 and 3:00 ish I would do my therapy vest, religiously. Yesterday I grabbed all my drugs and what not and plopped down in the car for a day filled with unknown, okay somewhat known as we headed to REI.  But see not only did I previously do an afternoon therapy vest I also did one before bed, so by 9:00. Well now last night we didn’t get home until 10:00 pm and my only requirement, wash my face and brush my teeth before bed, nice.

If all that non-therapy wasn’t exciting enough, I got to eat out at my first restaurant in 9 months…9 months. I had food brought to me from restaurants when I was waiting on the vent, I have eaten in the clinic cafeteria and I have had some chicken sharable things from McDonalds as of late but I have not set down in a restaurant to eat in that long. I loved every minute of it. I probably consumed way too much sodium with the popcorn they start off with, as I am a sucker for that stuff, and the chicken wings, and the super tasty turkey wild rice soup. The hardest part was deciding what was safest to eat and drink. I am afraid of ice and then when they brought Chris’ ice tea it had a lemon wedge – I forgot about that whole thing. So, I opted for hot tea, figured that was the safest.

All in all it was a great day, I fell into bed and not sure if my head even hit the pillow before I was asleep. My legs were great yesterday I had energy in them I haven’t had in weeks, my lungs I still have fits with them and wish they would just shape up and work properly everyday not just on a random day.  But I will say Tuesday was a successful, happy, enjoyable day. I got to spend the whole day with my husband and I learned that the ladies voice on the GPS is about as annoying as nails on a chalkboard, and not only that but if I hear the words re-calculating from her again anytime soon she might be replaced by a good old fashioned map – which I highly recommend one carries in the car regardless of said GPS. 

Friday, March 23, 2012

One Year Ago!

I posted this one year ago today!

The List
After nearly two months of talking about the 'list' I am finally on it. I am still not sure how I feel, or if I feel anything. I am scared and I am excited, but it is easy to deal with the CF now because it is what I have known for so many years. It is the unknown that terrifies me..will I be a lucky one that sails right through surgery and 10 years later I am still living a 'healthy' life despite the immune suppression, or will I be a struggler from day one. I try not to dwell on these things but they seem to creep up into my head when I don't want them to.

In reality everyday is like this, we just don't see it as clearly. Everyday has the possibility to be great or to be disastrous, but when we go about our day we just don't think of the bad things that can happen every time we do something. But it is different when it is a choice and it sits there right in front of you all day. Most people are very excited for me, and I am grateful for their support, it's just that I don't share their enthusiasm only because I know the reality (correction: I am excited for what could be, just reserved). For many it sounds so simple, like Chris said to a co-worker it is great but it isn't like just changing out a car battery, it doesn't work like that.  If only it did then I wouldn't spend chunks of my day thinking about it.

For now knowing that I am listed will make me edgy every time the phone rings and I hope in time that will pass, which I am sure it will. I waited for two weeks to get the call I was on the list with my phone never out of earshot to hear it ring and the one time I go completely down the hall I get that call. Life is kind of funny like that, but I do think it was for the best, my mom was right. Because the office I was in at the time was not the place that I wanted to receive a call saying I was on the list. Sounds weird but I was at someone else's desk doing their work, which was unnerving enough, and the whole thing would have been weird. So, instead I receive the news in a voicemail, I could process on my own.

The second Nadine said her name I knew why she called and when she said insurance had approved and she could get me on the list that afternoon, that was when my heart hit my stomach. Like when you get called up to do your speech that you have so prepared for, and even though you are nervous and expecting to be called, when the teacher says your name you go all tingly and sick at the same time. That's how it felt, preparing for this and yet not ready. I can only imagine how it will be when I get the actual call. Guess we will see when that day comes.

To the person who will give up their life to give me a new one, I pray for you and your family and the generosity of their decision. God Bless you.

Wednesday, March 21, 2012

Clamshell Incision - Double Lung Transplant

So, I said I was going to post something transplant related and here it is (photo was taken Dec. 21, 2011). Not everyday I find myself posing half naked for all the world to see, but I figured in this case a picture is worth a thousand words and for those out there wondering how on earth the lungs get put in - this is how. A clamshell incision, made from under one arm pit to the other. The four holes below are where the chest tubes were, and if you look really close at the lower part of the photo on what would be my left side you can see the top of my stomach tube (barely visible, but there). So, there you have it. And yes, my sternum was cut and I have a nice loop of wire holding that together, which can be seen on my chest x-rays.

Clamshell Incision - Double Lung Transplant

Stitches still in chest tube holes, an nasty bruise. Nov. 2011

Tuesday, March 20, 2012

Topsy Turvy Tuesday

Ah, another 24 hour visit to club Saint Mary's behind me. I went in on Sunday afternoon after I received a phone all that my WBC (white blood count) was .7 or 700, they prefer I be at least around 4,000. With such a low WBC I am way more susceptible to picking up any little bug and also anything that might already be in my body deciding to kick up and I would have no way to fight it. So, as per usual transplant the goal is to keep the WBC low enough as to not want to reject my lungs but high enough to fight off infection. So, all my drugs are currently changed up, what I once was on is either stopped or halved. I was also given a drug to help boost my WBC, which I was told had side effects and after injection two I thought I was home free, alas I was not. I got up off the chair last night and my hips hurt, then my knees then my back and what a rotten night it was from there.

This morning as I went for my now daily blood draw I got to see a couple I have meet through transplant, Lynn (the transplanted) and her husband Charlie. Since I no longer do pulmonary rehab at the clinic I don't see them and today was the first time in probably six weeks, at least since before my abscess issue. It was so good to see them, and so good to have a conversation with someone who has experienced the same things, she to has dealt with low WBC and had the same side effects. She has had other issues, different then mine but again we all seem to have some weird differences post transplant. It's good to know someone that has the same ups and downs each day and thinks and hopes the same thing each day. That the one good day is the turning point and then waking up the next day only to feel like poo again and thinking will this ever get better. These meetings are almost better than support group because they are one on one, and in this case L and C, don't attend support group (which I only occasionally do), but I really enjoy their company.

I know someday you will all get tired of reading my ups and downs of transplant, and I hope that one day transplant stories will be 'on a side note' rather than the ramblings of my blog post. I have somethings that I am hoping to get posted on here soon that are transplant related, I will see how soon I can accomplish this.

Well, my back is starting to talk to me that I should either get up or lie down, I can't decide which but in any case it hurts and something is being called for.

I hope to do another painting today. Three last week, was pretty great. I did some drawings in the hospital, I woke up one morning and drew something in my head, later that day I put it on paper and I think it might be the inspiration for a future painting. This has really been taking off. Now if only I wouldn't balk every time I looked at the price of canvas frames. The other problem is I get overwhelmed when buying frames, because I look at the price, the size of the frame and say - can I paint something on there worthy of that frame price? Then I think, I can't just keep collecting my paintings, I need to sell them or something, so then there is that whole issue. Ugh, such problems, right? I mean I can paint, how cool is that and I will just continue to enjoy that I can do that - for now.

Happy Tuesday!

Saturday, March 17, 2012

U2, I say!

Being from generation X, why has it taken me so long to enjoy and appreciate the music that was of my generation? It has taken me way to long to appreciate bands such as the Red Hot Chili Peppers, Pearl Jam, Nirvana, and the like. I was into country or sadly, oldies, how crazy is that. But here I am nearly 20 years later wondering how or why I never really got into it. I think Tony might have even tried to get me into it. I do remember listening and falling in love with U2's Joshua Tree my senior year, that was playing in the Mazda 323 of my brothers all the time when I would drive anywhere. I am not sure why he left his U2 cassette behind but I think I might have worn it out my senior year. Actually not true, I came across it within the last  year or so, and it looked well worn.

Somedays I like to think some of these new things I find of interest are somehow related to my donor. Like the fact that I love italian and pasta, or even though I have always had an appreciation for music it has been as of late really important to me, love listening as well as signing (as previous posts mentions). I have less of an affinity for watching TV, which is a good thing and really that started when I was on the vent unit. I really didn't watch too much TV, occasionally a movie but I never was able to focus long enough to enjoy anything.

Speaking of the vent unit, I have had many flash backs or memories of being on the unit. Evenings or afternoons sitting with my dad or mom in the vent atrium (or hallway) with the windows on both sides watching the sun as it moved across the sky, some reason I found those vistas beautiful. I remember how the windows would reflect each other and then there would be an overlay of the water tower and window or something and I thought what an amazing picture it would make, or painting but I don't quite know how to capture it. I remember the evening early on when I still liked food my parents got nachos from Canadian Honker and they were fantastic, I could eat them now and I can still remember how good they were.

The most difficult thing for me is to think about Stacy still there on the vent nearly 5 months after I left. I have officially been out of the vent unit longer that I was on it, and that is so relieving to say. I vowed to my parents that I will not go back on a vent, mind you I was for my abscess but I won't do it again if I need to because these lungs will someday go bad. Nope, when these lungs go I will not go through this journey again. This has been a fantastic, eye opening, wonderful in some respects journey but my limits have been reached. There are days that are so difficult I don't know how I make it through.

Many believe getting a new organ somehow magically fixes things but the truth is it's just another set of problems, and from what I have been told time and time again, and read time and time again that the first year is the hardest and I believe that. It is very hard each day to tell yourself that 'you can do this Sarah, it will get better', so each day I wake up and hope this day will be a better day. I guess that is why each day I try to do something that brings me enjoyment, whether it be to sit on my deck in the sun for a while, or paint, or draw, or knit, or read. I could spend all day complaining but I don't want to plant myself into ground full of frustration or sadness because I will continue to grow in that and it will just perpetuate a cycle of ugliness. I love life, I love seeing the faces of people I love every chance I get, I love waking up and seeing it sunny out. I love the feeling of putting a new stroke of paint on canvas and having no clue what is going to come of it. Transplant gave me new lungs and a new look at life, but it is a struggle everyday. With ups and downs on drugs, to my body adjusting to the ups and down on drugs. I am exhausted!

With a day as beautiful as it is I wish I had the energy to take a long walk, but I don't. However, I will enjoy every moment of my windows being open, hearing the neighbor kids playing, birds singing, and air flowing through the house just as much as  walk out in, most especially because it is still March...March!!! This couldn't be any more wonderful!

Monday, March 12, 2012

Words Speak Volumes

What a difference a day or two can make. I can go from feeling great, or at least okay, to crappy at the snap of a finger. Not sure what my problem is today.  I called into my transplant coordinator for the second week in a row, as today I just couldn't find second gear and these eyes of mine are starting to really concern me. Seemed as the day progressed I felt worse and worse. I was just in the clinic last Wed or Thursday as I didn't feel good then either but nothing showed up on the CT or the X-ray, in fact according to the CT my area of abscess has improved again since the last CT which is fantastic, then why do I feel so rotten. This silly roller coaster ride has today been nearly too much to handle. I can handle a lot, but every so often I lose my grip sit down and cry. I realize this journey is going to be a tough one but even the toughest have their days and today was mine. I do believe that gloomy weather makes things ten times worse, and it is possible that my chest pain will forever be linked to a low or high pressure system in the atmosphere. I mean really if people with arthritis can feel the weather change why wouldn't I will my metal rewired chest feel something similar?

Well enough about that negativity, right! I made another loaf of bread tonight, I shouldn't really say 'made' when all I do is throw a frozen log of dough in a buttered pan and wait for it to rise. This one I had to push along in the oven via the quick method as it took me all day to get up the energy to do it. Friday's loaf I totally forgot I was raising and came up stairs to find this sadly shaped bulging bread that desperately needed to be baked pronto, it was very airy and oh so good. There is no comparison, frozen or not, to the taste of this kind of bread vs. store bought ready baked in a bag. We seldom ever finish a purchased loaf of bread, I can't tell you how much bread over the years we have thrown out but this fresh bread is never thrown in fact we can eat half a loaf in a setting. I am trying to decide if a bread machine purchase is to be considered here, which I know tastes great but the one my parents have even though it is good the bread still tastes different then this. So, really I have no clue other than fresh bread is awesome, even without anything on it! Makes me want to go eat a piece right now.

Bought myself a dress the other day, was so excited to try it on. I waited until I got home as I didn't have enough energy at the store to undress and redress - I hate that process. But when I tried the dress on I was sadly disappointed, now mind you I might have to give it a second look but this 'new' body of mine is hard to adjust to. I no longer have a butt, but rather a gut. I think I could handle the gut if there was a butt to balance it out. Who knew this could be such an issue, I really rather be a little plump all over then look backwards in the mirror. I remember my first days home from the hospital I saw myself in the full mirror and was horrified, I looked like a starving child in a foreign country, no lie. I was flat from head to toe and my butt, well it was just sagging there like bags of flesh, I realize more than you need to know but it is the truth. My body at it's 97 pounds dripping wet was a very sad sight. Now four months later and nearly 20 pounds heavier, it's all wacky like the fat doesn't know quite where to go. I would be happy to direct it if it would only listen.

Well I think I have covered a considerable amount of random topics this evening. Let's hope tomorrow is a better day and tonight a good nights sleep. I have been dreaming of creatures and not so pleasant things lately, not sure why as I don't watch weird things before bed and the book I am reading 'A Light in the Window' about a baptist priest in a small town, Mitford, is about as far from scary as person can get. Maybe it's just my mind bored all day so it's making up stories at night, who knows maybe there's a book deal in these dreams.

Lastly, I say God rest your soul to Greg Sellnow. He has done many things with his ability to write and I will forever think fondly of him for being part of my transplant story.  It was through him that God worked a miracle for me and for those around me. I still can't completely wrap my head around the fact that I got my lungs within hours of that article circulating the city. Thank you Greg and may God be with your family.

Saturday, March 10, 2012

A Gorgeous Day!

What a beautiful day. I started my day at 5:20, after talking myself into driving to the cities with my parents to Warners' Stellians Warehouse sale to find a couple appliances. So, once I realized I wasn’t going to fall back asleep since I was trying to decide whether to fall back asleep, I got up showered, got dressed, started water for my oatmeal and decided to call my parents to let them know I was ready if they wanted to pick me up. Low and behold my parents decided not to go, so there I was at not even six a.m. with no where to go. I gave serious consideration to going myself but decided I wasn’t ready to drive over an hour each way by myself, yet. In the end my brother, who went to the sale for me, found us a good deal on a dishwasher. I can’t tell you how excited I am for that. Funny what becomes exciting when you get older and become a homeowner. Our current dishwasher is about twenty years old at least, it’s time for energy efficient.

My day has been busy since that moment. I had originally though I would spend the day painting and getting a load of laundry done. Instead I found myself in the kitchen making peanut butter cookies, which I intended to share with my family as now being diabetic I can’t eat my usual handful of cookies in one sitting and I am pretty sure Chris would never want a cookie again if I made him eat two dozen or more cookies. Forgetting how time consuming that project was it took me all morning into the early afternoon. Then my husband who is dropping a tree with his brother and dad at his brother’s house called and asked if I would pick up lunch and bring it to them. I opted, as I figured it was easier and I was too tired to go hunt down food, to make them spaghetti, including half a fresh loaf of bread I had just made two days ago and a hearty portion of peanut butter cookies.  

I on the other hand was so hungry before the food request came, which would have tasted so good, that I downed a whole box of Kraft mac and cheese, just an fyi, don’t eat a full box of mac and cheese in one setting. I am not sure when I will ever be able to look at mac and cheese again let alone put it in my mouth. Sure I say that now but next time my sugars take a dive and I am hungry beyond words I will find myself doing the same silly thing. The spaghetti on the other hand had onions, mushrooms, and peppered salami in. I hope the salami tasted good as it was an idea I had. But according to recipes on the Internet it was a good choice. My guys didn’t seem to complain, then again they were so hungry they probably could have eaten cardboard and been happy.

I came home from the guys, and my dad showed up so we went for a walk in this super fantastic weather. I am severely out of shape right how, the prednisone having taken  it’s toll on my legs with this last round that I felt just sad at how hard it was to walk. Now it didn’t help we were walking into the wind as we started, walking return with the wind at our back was quite nice.

So that was my day and it’s still hours until I go to bed but I think I might find time yet for a nap as I am pooped. This week I have some tests at the clinic, checking my acid reflux, which the one test I know will suck big time as I have to have a probe in my stomach for 24 hours. I have had a lot of things done to me but a tube in my nose and down into my stomach is at the top of my list of hates.

On Wednesday I will be part of the church Lenten program. Not sure how I will feel about seeing myself on the ‘big screen’ but it will be closest I ever get to being in a movie. You can see me at the 11 and 7 pm services that day at Gloria Dei.

I hope you have had a good or great Saturday wherever you are, each day is a gift unwrap it and use it to its fullest.

Friday, March 2, 2012

Weekly rundown

My absence this week has only been because I felt I had a lack of things to say, in reality there is a lot to say but nothing new or exciting more than the usual humdrum as of late. Did that sentence make any sense?

In any case, I have been home since Monday, I was at the clinic on Thursday and met with the good dr. W. Dr. W is always good for conversation and finding answers to these strange and crazy things that seem to plague me, and I am beginning to feel like some weird transplant anomaly, but I would guess some other transplanters feel the same way at times. Well Dr. W walked into the room Thursday and gave me a look of question, a question of perplexing curiosity. In simple words it was a conversation as such, "how do we go from no rejection to rejection in 10 days?" Frankly, if he doesn't know how the heck am I suppose to know. Also, "the noise you heard when breathing is not what people would hear to indicate rejection." I reiterated that the noise I "heard" I assumed was my abscess coming back. So, not only do I have weird breathing, and weird listening skills, I also have the ability to reject at the snap of a finger, yea for me!

In the end I gained myself two more tests and if I fail, or pass both depending on ones frame of reference or positive attitude I could find myself having another surgery. And hold up for this, this surgery would be to prevent acid reflux, yup you heard me. A new theory is acid reflux is making its way into my lungs causing the rejection, or what looks like rejection, or something along those lines. So, seriously, this just seems to get more perplexing than anything. Somedays I feel like a walking time bomb, waiting for the next confusing thing to pop up. At this point I will just not get too excited about it. I have too many other things to focus on and that is probably a good thing.

On a great note my breathing test improved. I finally made it out of the 2.2s and hopefully will make it into the 2.4s soon. When I do, you will know.

As the evening winds down I find myself looking forward to crawling into bed and cuddling up under those warm blankets. Last night I slept the best I have in days, it was great and yet I still didn't want to get up, but then again who does when it's gloomy out like it was today. Guess I am itching for some spring warm weather to get outside a little more.

Oh, aside from the good breathing news I am now able to eat fresh fruits and veggies, just so long as I clean them properly. And tonight for the first time I ate something made by my sister, yes, I ate a magic bar. The first homemade food that wasn't made by my parents or myself, in someone else's kitchen. It was great and almost felt forbidden. I enjoyed every crumb. True I did eat Tonys bagels and bread but that was different somehow, guess because I was there when he made it.

Hope you have some sweet dreams, I already had mine wide awake.

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