I have felt all of those things, and I have also gotten caught up in the "shoulds" when I shouldn't have - after all, the journey is unique for everyone. As long as you are honest and true to yourself I don't think you can go wrong.
But here I wanted to give a bit of an insider's look at how I've felt throughout this process during the various stages. I've schooled you all enough on the brain of the pre-transplant stage, so I will skip straight to the day I got called.
Being Called for TransplantAs you may know, the day of the call that would turn out to be the actual call felt different than my previous two dry runs. There was an air of "this will happen today" as we waited to hear the news. Things went smoothly, there was no chaos or weird/incompetent nurses encountered. I even signed my concent at 10:23 am on 10/23/14!
I was feeling positive as I remember it (throughout all of this you will have to excuse my less than perfect memory, i.e. Todd will probably read this and have corrections *smiley face*). I was trying to put all of the scary/hard times ahead thoughts out of my mind and just know that I would handle one thing at a time. Right now I was handling the stress of the wait and that was enough.
So I was feeling positive all the way up to the point when the start of the donor operating room time got further away ... I was kind of thinking the longer it was from the start of the O.R. time, the less likely it was that the organs were good. I started to doubt that it was a go, but my team remained ever positive. What did I know!
Once we got the "go" I felt pretty good. I was very in the moment, very "let's do this." Being rolled away to the operating room wasn't at all terrifying like I'd once imagined it might be.
Waking up and the Early DaysI'm not going to lie - much of this time is a fuzzy blur. My first memory of waking up was lying in the ICU and two of Todd's aunts were sitting in there whispering about how good I looked, how good my color was. I remember the first time seeing Todd - he looked happier than I think I had ever seen him.
I don't remember too much about how I felt during this time. I'd say the drugs kept me feeling pretty happy for the most part. I wasn't in any pain, I didn't have much discomfort - I wasn't even fully aware of all the things that were sticking out of me yet! Things were pretty smooth except for my mouth being so so dry and me wanting water (but only being allowed mouth swabs) like never before.
Step DownI was in ICU only a few dreamy days and then it was on to the harsh reality of step down. I say this not only because recovery become much harder but because we were moved from the cushy new Duke Medical Pavilion building to a small cramped floor in the old hospital - however, I was fortunate enough to get moved to one of the largest rooms on the floor after a few days which was nice.
Things are still foggy in the early days of step down. But after a little while, what I can only describe as "survival mode" kicked in. Immediate concerns trumped everything else: have pain (mostly from my back from the horrible bed), need pain medicine; have to pee, need to get to the bathroom with all my ten zillion tubes. Things like changing clothes, brushing teeth, washing hair...all those were luxuries saved for special occasions that required way too much energy. I was exhausted! And with the hospital's constant interruptions I was not getting adequate sleep.
I actually started to get a bit crazy from lack of sleep, unofficially diagnosed by my awesome shrink who came by to visit me a couple of times. Things did get better once I realized all the problems lack of sleep was causing (I can't remember specifics but I was basically mentally unraveling) and made it a priority by sneaking in naps whenever I could and trying to negotiate sleeping time with my nurses.
One of the more frustrating things for me was that I just wasn't feeling better! I truly thought, I went through all that for this?? I had so much chest and new-lung tightness in the first couple of weeks it was incredibly frustrating. It made not only my walking laps difficult but even things like getting to the bathroom would make me short of breath. Of course this was also because I had become de-conditioned from sitting around in a hospital bed. But knowing that didn't make it any better.
Also, the doctors kept telling me I was progressing well, which should have been great news, but instead frustrated me more because I felt I was having such a tough time. In my worst times, I felt imminently that my fate was in my own hands - that I would have to power upward with sheer mental faith and endurance or be left to wither away in the walls of 3100 (my hospital floor.) I have never felt more alone as I did then. It didn't matter that I had the most wonderful caregivers at my side or a team of hundreds pulling for me outside the hospital. All that mattered was could I get through another day knowing that if I did the next day would be better.
WalkingI have to dedicate an entire section to this because it was such a crucial thing in my step-down experience. Successful recovery was won and lost in the number of laps you were able to do each day - or so the surgeons would have you think!
Some days, walking laps in step down was the most difficult thing I have ever done. When your body is running on fumes (low iron, at first I had no food, low blood pressure, very high blood sugars, lack of sleep...) again you have to rely on that sheer mental will. There were many days like this. Many more than I found myself walking and thinking, "wow, these new lungs are awesome!" Though I did have those moments, like the first time I was able to walk and talk to either Todd or my brother (my faithful walking partners/pullers of the IV pole) without getting short of breath!
Which brings me to my next topic.
Am I grateful for this gift I have received? Abso-freakin'-lutely! I know that intellectually beyond a doubt. But have I had the chance to really feel that gratitude yet? Not really. Thoughts of "someone unselfishly saved my life" haven't really entered into my thinking yet. After all, there is a lot of stuff to deal with (as you've partly seen) when recovering from a major, life-changing surgery. Do I feel guilty about it? Sort of. I feel like I should be having these "I feel grateful" moments each day. But instead I am still focused each day on the task to accomplish (going to rehab, things that need to be done, appointments.) I know the gratitude will come more fully. It certainly came at Thanksgiving when I felt it very close to my heart.
As a side note, honestly, part of me is still in denial about how sick I was before transplant - in other words, how much did these organs really save my life? In my mind I was doing pretty darn well for someone with end-stage lung disease. But people around me could see me deteriorate more and more by the week. And while I may well have lived another year or more in those conditions, the threat of some kind of flu or other viral attack loomed always as a threat that could either knock me to below transplantable level or worse.
In ConclusionIn the end, transplant was the hardest thing I have ever done - by far. Getting home and having to manage tube feedings and all of my new medications and schedules is a close second. All of this was hard in so many ways, mentally, physically and emotionally. But has it been worth it? Has it been awesome to walk to my car with groceries and not get out of breath? To blow out my birthday candles like it was nothing? To have PFTs I haven't had since my early 20s? Abso-freakin'-lutely. And I know those accomplishments are only likely to grow!
I very much look forward to the six month mark when I am able to write my donor family a letter of appreciation and hope very much to hear back from them and learn about who my donor was and what the circumstances were of their passing.
And so I will leave you with this, which I found very appropriate:
Love you all,
Photo credits: Life is a Beautiful Struggle, uk.urbanest.com; Optimism, www.hdwallpapers.com; Drugged up Cow, www.gigwise.com; Success, www.happyherbivore.com; IV Cat, imgarcade.com; Elephant on Back, www.emmascrivner.net; Quotes, www.wishbowl.org.