Home, take 2

Woke up at home today, slept nearly 8 hours last night, awesome. Mind you I was up at 4 am yesterday and never got a nap in. Apparently I missed my bed all these months. Still getting used to traversing my bedroom in the dark. This new bed has left me with multiple bruises all below my knees, good thing it isn't summer people might think I am drunk all the time and can't walk straight.

Today is dose three and final dose of high prednisone, I can feel its effects but push through as I have to keep the legs strong, and the more I sit the harder it is to get going again. I can really feel the water retention from it in my knees as the day goes on. Main reason I never went downstairs last night to do the treadmill, that and I was tired, but today I will make the voyage, if nothing else as an excuse to exercise and watch my latest season one Dr. Who episode, thank you Tony! I am thinking I ought try the elliptical for 5 minutes today if my legs can handle it. Yippy, only been like a year since I stopped doing it and rode just the treadmill toward the end of my sick days back last winter.

I am trying something new on my blog, don't know how often I will get it updated, but at the end of the page I have included some poetry or quotes, nothing I have written as poetry has never been my thing, but maybe someday I will give it a try. My 7 year old niece is much more accomplished in that department. Oh my, I just had another great idea, stay tuned for that one. I also hope to one day give this blog a better look, I am a graphic designer for Pete's sake, I should be able to make it a little more polished. Lots to do these days and such little time.

Better get my butt in gear. My clinic appointment will be here before I know it and much yet to be accomplished.

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Rejection, bronch and repeat!

No less than 34.5 hours ago I entered St. Mary's for what I thought was my abscess returning. I didn't want to panic as I know that does no good in these situations. Seeing as I had just spent my first official night at home I really was hesitant to call in but I realize also that with new lungs caution is key. So by Saturday afternoon I made the decision at 2:30 to call in, by 4:30 I was sitting with my doc up in on transplant and the decision was to admit me for an early sunday morning bronch. Lucky for me the doc who did my bronch that was part of my life saving team a couple weeks ago was on this weekend along with my cf/transplant doc, so it was a good weekend to go in.

Turns out I was wrong, it wasn't my abscess at all, yippee, but instead, rejection ...again, crap. Not at all what I wanted to hear, but the good 'ol dr. Scott assured me it was okay and that we just need to get a better hold on my anti-rejection. This body of mine is just too strong, my immune system having been so used to fighting infection during my crappy cf lung days that it is what it wants to do, fight my happy new lungs that appear out of place. Some adjustments need to be made again. For now I am back on high doses of prednisone which will once again weaken my legs and keep sleep from me, thus the reason I have been awake since 4 am and find myself drawing and blogging. If I had paints I would be doing that right now.

Hopefully I will go home today and yes to my house, continue getting settled, again. My first rejection scare three months ago I cried as I was so scared, yesterday I said, oh great! Two months ago I still wasn't sure if all these ups and downs were worth it, the pain, mental frustration, fear, and uncertainty. But today I can honestly say that hugging and being hugged by my nieces and nephews, spending time with my parents, sitting in the dinning room on a sunny saturday morning with my husband, playing and losing poorly Words with friends with my sister, or asking my brother umpteen questions about random things, that my friends is worth every single moment of this journey. Each extra day, however many there are is a true blessing.

Now go enjoy the day! I am going to try and get some more sleep!

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Location:St Mary's 6D740

Home

Life sure flies by lately. Seems I blink and another week has gone by. It has been great being out of the hospital. I realize now how much of an issue that abscess in my airway was causing me. Hindsight is always 20/20 and in this case, so true. I am not out of the woods with the abscesses, there are no guarantees that it will not return, as of now it continues to drain into my airway and thus the reason I remain, for the foreseeable future, on antibiotics.

Even though I do a self breathing check everyday I worry that the abscess will return, at least now I know the doctors have options and I hope that the least invasive will be the one or ones that work because having my lung collapsed and the abscesses removed then having a chest tube for days sounds about as un-fun as anything I could possibly think of. So, I will try to worry less and hope for the best, as always.

This week has also been interesting as I have had some moments where doing mundane things I am overcome by the realization that I am still here on this earth, still breathing. I can't explain what the feeling is, an overwhelming sense of gratitude for my donor and a thankfulness that I have been given more time. I have thought more about my donor lately and continue to formulate the letter I will one day write to his or her family. It's like being passed a torch and I am carrying this torch not only to brighten my life but to see that the life that once sustained these lungs are given their full share of life for the generous gift they have bestowed on me.

Tonight I posted this on Facebook: A mere 270 days ago I walked out of my house on oxygen and into St. Mary's with a head cold and lung infection. In those 270 days I spent 145 days on a ventilator, underwent five surgeries, a tracheotomy, a stomach tube placement, lung transplant, sinus surgery, and abscess drainage. I nearly died four times, once before the tracheotomy, twice during my lung transplant, and a way too close call nearly three weeks ago. Tonight I sit here posting from the home I left 270 days ago, officially back! This time no oxygen, and what I have gained is priceless. Not only receiving the best gift from a stranger but having a life altering experience that I can never fully explain in words. The people I met that changed my life and a renewed spirit and love for my fellow humans. This life journey can never be made alone, and it is those we encounter everyday that make our lives what they are and even in the deepest hardship we can find the brightest light!

Tomorrow when I wake, forgetting where I am at, it will strike me that I have come a very long way and if I am lucky I will have many more nights to enjoy just being home!


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Day 11

Here I am still in the hospital, the hope is to get out tomorrow, Sunday. Now as much as I said in my last post I was okay being here, I am really now ready to be out. The nights of beeping machines, nurse wake ups, blood draws and way too many trips to the bathroom... thanks to my nocturnal kidneys, and I am exhausted. Now I realize the bathroom trips don't change once home but the beeping...STOP THE BEEPING.

This afternoon my dad and I went to services in the chapel, it was really nice. Mind you I am not Catholic and after years of not attending with my Dad I have lost some of the wording from my memory, that and I am sure they changed up a few things in the last decade. My favorite part of church services these days has to be singing. It was so hard to sing when I had my old lungs, my voice was usually crackly, but most obviously I couldn't breathe long enough to hold a note. So now I sing my heart out, mind you I  assume I sound good but one never knows if they sound good to others or just to themselves. 

I have loved to sing for as long as I can remember so much so that I remember taking a piano book with current (1980s) music at the time out into the woods and sang out there figuring I could sing as loud as I wanted and no one could hear me. Although I probably still sung quietly knowing me because I would worry someone were actually listening.

I have never sang solo in front of people, just as a group in the children's church choir. The song I still remember, "I am a promise, I am a possibility, I am a promise with a capital P I am a great big bundle of potentiality..." don't know why that one still sticks after 20 years. Wonder if my brother remembers it as well. Wondering if I might be good enough to join the adult choir some day, that would be unreal. How cool it would be to be able to breathe and sing to many.

In any case I will put my aspirations to be Adelle on the back burner for now as I have many things to do just to make daily life livable again. Hopefully if all goes well I will be moving back home early this week. A couple days at hotel mom and dad before my return home after 8.5 months of hospital and convalescence. It will be an adjustment for certain and I am glad that this abscess issue came up before I went home. You know the one thing that I have learned, if nothing else, throughout this journey is that God has a plan and He is in charge. As long as I trust Him, I can handle anything this journey throws my way. His plan may not be my plan but He has done amazing things through me and I believe there will be more to come.

Philippians 4:13
I can do all things through Christ who strengthens me. 

In the well spoken words of Tiny Tim, "God bless us, every one!"


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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!


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Here is what I know about the hospital, one never expects to get good sleep, between nurse visits, and loud obnoxious beeping, and blaring machines one will never get adequate sleep to heal whatever is the cause of the visit in the first place. I also know that the minute a nurse wakes you up you will inevitably have to make a trip to the bathroom before you can even attempt to fall back asleep. Last night I believe I made four trips to the restroom, not a big deal until you have to pull your iv pole and roll up your way to long gown while half awake and make sure you pee in the top hat, if you know what I mean great if not, you are lucky.

As I sit in my very quaint room I get to watch the construction out my window, a large crane is moving buckets of dirt from one side of the building to another, it is very entertaining and monotonous at the same time. 

I will admit that I am not exactly tech savvy with this iPad, I can't seem to get photos to upload, I can't update my FB photo and I can't seem to get photos on here. My lung photos I used a different computer. My goal was to attach photos of my newest but not biggest scar, my lung transplant is by far my biggest and best scar followed by this latest 3+ inch one on my throat, but the good news, it took away my trachea scar. So a longer scar but less ugly. I apparently have a great ability to have strange things wrong with me like my latest jaw breaker sized abscess that erupted, yum during surgery. I met one of the thoracic fellows today that was in my my surgery he came in and restitched and repositioned my drain tube. Apparently it was interesting and he was quite pleased that I still had my voice as they were next to the nerve that controls voice.

Hopefully it will not return and with that I am going to see about a nap, the loud noises seem to have quieted, of course the minute I close these hazel eyes the machines will begin again. Calgon, take me away....


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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.