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.

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!

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!

Surviving the hospital stay!

Before transplant and right after I hated the hospital and the very idea of coming in. As with CF, visits to the hospital can be frequent, and I fought those visits tooth and nail to stay out. Even generating tears telling Dr. Scott I could do the meds at home and feel better just as well as if I were in the hospital. Then I went and found myself on the vent in the hospital for 145 days, payback, possibly. In any case, it was one year ago that we started the discussion of transplant and I was just being discharged from a three week visit. 

Fast forward one year and who would have guessed that I would be sitting here with new lungs, I couldn't even imagine this day no matter how hard I would have tried, but I also would have never expected to spend time on a vent. So basically life is one surprise after another. 

But the biggest surprise to me as I am on day six of my hospital stay, I am at peace with being here, I am not frustrated or angry, or chomping at the bit to get out, I am in a way content. There are only a few reasons why I can understand this. One, being I am too exhausted at just the idea of doing all these IV medications at home on my own that I am ok with someone else doing the work, two, that I don't feel like absolute shit like I used to when I went in the hospital thus its less taxing, and/or three, that maybe with not having to cough my lungs out three times a day on top of all the drugs on top of making sure things are done the way I like them that I am not as uptight therefore I can relax more. 

Whatever the case may be I am pleased that I feel this way. It has taken me all these years to not hate the hospital but to appreciate it, it could also be the fact that being alive, still, changes a person and their perspective.

My only real frustration at this time is that stupid pseudomonas had to find its way back into my life and lungs. I hope and pray we can get rid of it, as it is such an ugly bacteria to have, how well my old lungs knew it. For now, I will do my part and relax here during my hospital visit and let the nurses, doctors, and my own body do what they all need to do to make me better.

I am in good company here, I have met so many people through this whole process and I am getting to spend time with them and meet a few new ones. Transplanting an organ is more than just that, I would have never realized how much it has transformed my life and others around me, I think I have only seen the beginning of something amazing.

Sweet dreams!


- Posted using BlogPress from my iPad

Old Lungs

WARNING: Here are photos of my old Cystic Fibrosis, bacteria ridden lungs. The creamy colored parts are pus that has collected in the airways and the open 'holes' are airways that obviously not functioning as they should. My doctor said they were basically two bags of pus, and he was right. But my nurses and rts knew that when they suctioned me. Healthy lungs are pink.

Po's Wall

I love Kung Fu Panda. Mostly I love Jack Black as Po, he does a fabulous job creating this sweet lovable character with just his voice. Po has no hope of becoming the Dragon Warrior but finds himself the chosen one.

In the beginning of the movie we see Po working so hard to climb the steps to reach the location of the Dragon Warrior selection. Huffing and puffing he makes his way up the stairs, but gets there only to find the doors have been closed and the concrete walls are impenetrable. This is that spot at which I realized I am in the same place that Po is. No, I am not trying to become a Warrior, I am just trying to see over the wall. I have climbed and climbed these stairs of my life and huffed and puffed along the way winded and bedraggled I have reached the wall with little energy to make my way over to see what is on the other side. All I want is to see the other side, to see what wonders lie ahead.
I have spent the last five days fighting a stupid head cold, which is ugly and irritating in itself but I woke up Wednesday and to add insult injury I had the worst lung bleed I have had in the last three or more years. So bad that I panicked and call, who else 'Mom'. Chris was already at work. I had no warning no sense of this happening it just came out of no where, just like when you bend over and a blood nose starts. Same thing. So, I spent my whole darn day at the clinic waiting for CT results.The results, were...nothing new. I had no active bleed, the one in the morning stopped after about five minutes of coughing fits and hadn't returned. That is good news, but I was given strict orders, due to my head cold (from being to close to the kiddos), to keep my distance from my nieces and nephews the most awful thing I can ever imagine doing is not kissing there little necks and so soft, unblemished skin.

Here begins my journey, post transplant life is already starting to work it's way into today's life. Post transplant the doc feels my biggest challenge will be keeping away from the kids. Masks will be the new norm. I guess of all the things I will be sad to give up with the transplant will be loving up the kids. Not touching their skin to my lips sounds like the ultimate punishment. But, yet the reward is that I get to spend many more years with them, and that means a lot.

Transplant is my wall just like the wall that Po has in front of him, he is desperate to get to the other side to enjoy, see, and experience all the festivities with the others. I am desperate to see my life on the other side of the wall, the land of transplant. What will it be like? How will I be different? How will I be the same? How will I view life? Will I ever stop waiting for the next bad thing to happen? The hardest part of life is the not knowing. Once Po reached the other side of the wall he found what he dreamed of. I hope that I will find a wonderful life, one I never dreamed could exist for me but with all the things that make my current life full.

Skadoosh!