A Look Into the Inner Feelings of Transplant

I know it's self imposed, but there are a lot of "should" feelings associated with transplant. Beforehand, I should be downtrodden but also miraculously remain optimistic! During, I should struggle but think about the positives of the future. And now, I should be eternally grateful.

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 Transplant

As 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 Days

I'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 Down

I 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.

Walking

I 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.

Gratitude

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 Conclusion

In 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,

L


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.

My Stay in Pictures

Waiting to hear if it's "a go"

Last weekend I downloaded all of the recent pictures from my phone and wow! I discovered another version of my hospital stay compared to the one Todd wrote so comprehensively. These are more like snap shots of what life was like. And so I share them now with you. Warning - there are a couple of gross pictures.

Being wheeled to the final holding area, my crew behind me

It's a beautiful day for a transplant! View off the roof of Duke.

Clearly this was very early on post transplant because I still have the line in my neck. I don't remember taking this or having it taken and by the size of my pupils I can see why.

Hand bruised and puffy from attempted IVs; my other arm was worse. That's what 12 hours of dehydration will do to you.

Blood draining from my beautiful new lungs into chest tubes

Yes, the nebulizer treatments weren't *quite* over yet

Mouth swabs in ICU...my lifeline for a dry, dry, dry mouth that couldn't have any water

Many, many medications running into me

Me with the stylish nasal-gastric tube that gave me nutrition before my G-J feeding tube was placed in my stomach.

Ahh...thickened liquids...this is fruit punch Gatorade, one of my stand-bys. I hated this stuff but I was glad to be able to drink!

Walking down the hall of 3300 with the Swedish walker

Oxygen saturation: 100%!!

An attempt at an artistic picture.

 

Dirty socks! The doctor Gustavo was always preaching about "dirty socks" - the more you walk the better you recover!

Laid up in the bed...at least I had graduated to pajamas. You can see I'm connected to two chest tubes. I was also hooked up to a heart monitor (with 6 leeds!) and an IV all the time. It made getting to the bathroom a huge chore!

Toward the end of my stay...I'm feeling better you can see. But while there were good moments like this, there were still many times of extreme fatigue and other issues.

These two animal collages from Ellen Tai were the best things anyone could have sent to me while I was in the hospital. I hung them on the wall and they always made me happy to look at. Everyone who came in my room also saw how adorable our pets are. Thank you Ellen!!!

Today's (and everyday's) Plan: WALK; Also, this was my rock star day of walking 30 laps - that is 6 laps shy of 2 miles.

And...home. Adjusting to new routines (here my G-J tube is being flushed) and life without kitties or dogs allowed in the bedroom which equals more snuggle time on laps during the day.

My G-J tube (the thing coming out of me) and holes from where my chest tubes were. This was taken right before my stitches were taken out.

And here is a look at my clamshell incision staples!

A look out the window at Duke clinic - where I have spent so much of my time - on a rainy day. The outside of the buildings sure are pretty.

I'm Back!

Just when I thought that Todd could not be any more awesome - him being at the hospital with me every day from 8-5, becoming completely involved and immersed in everything that was going on with my health care during transplant, taking care of meds and tube feed duties at home, waiting on me hand and foot some days, doing extra cleaning around the house, and of course having the amazing patience and talent to bring me back from my various break-downs - I just now read his chronicle of my hospital stay.

Wow. It is so thorough, covers so much of what the experience was like, it's just what I wanted to have to remember this experience. I am more impressed than words will express - and feel so so lucky to have him.

In truth, it is hard to imagine myself as the person he's talking about. I don't see myself as a champion of transplant recovery. To me, it was just moving forward, always trying to move forward, toward home. This was the hardest thing I have ever done and on the hardest days, I had to dig deep to have strength...but the alternative was stagnation, decline, maybe even death. And none of that was an option for me.

I hadn't known what I was going to write about today before I read Todd's transplant entry. I was maybe going to give some half-assed account of my perspective of the hospital experience. But the truth is, I don't remember nearly as much as I wish I did. I remember virtually nothing but snippets from ICU - the aunts whispering about not believing how good I looked; Todd smiling like I'd never seen him smile the first time I saw him; mouth swabs, lip moistener, wanting water like nothing else.

The first step-down room I was in for the next few days is also much of a blur. There was a brief day that I was allowed ice from the ice machine before the nurse assistant was told I wasn't allowed anything - it was pure bliss, chomping on that ice. I think I went through three cups of it in one night. With the benefit of all the pain meds I was on the cold didn't bother my teeth like it normally would have. Sad as it may seem this was one of the highlights of my entire stay! I remember a friend unexpectedly coming to visit and being so super excited about what I'd done, saying how good I looked, and the light up buttons on my bed being extremely complicated. :)

The room in which I spent my final two-plus weeks just seems like a prison cell to me lol. I was lucky to get one of the largest rooms on the floor but I hated being confined, and feeling like shit and being forced to walk, and constantly being on someone else's schedule. The being woken up at all hours, incessant beeping and other hospital joys go without saying.

But what I hated most of all was needing help with all my five zillion tubes and cords to get to the bathroom. And every day I spent in the hospital my back pain increased from the awful beds and I could feel my muscles (legs and core especially) getting weaker. The biggest surprise from all of this, besides how much energy it took from me, and how that seemed to go on and on, is how weak I got so quickly. In the hospital, stagnation really is the equivalent of a set-back. That was another reason I knew I had to keep pushing.

I was so fortunate to have either Todd, my mom or my brother there with me almost all of the time. And every night except for the last two when I insisted my brother sleep in a regular bed since I had few enough attachments to maneuver myself. I cannot thank my mom and brother enough - my brother who flew down from Michigan for two weeks and spent half of that time sleeping in an uncomfortable hospital chair-bed - for staying overnight with me. It was such a comfort to have a familiar face around and to help me so that I didn't have to page the nurse every five minutes. 'Cause trust me, I needed a whole lot of help.

Anyway, I had thought that I wanted to write to chronicle a lot of this experience myself but between the fuzzy headed-ness from the drugs and the side effect of having eye trouble (reading, typing) that was not possible. I guess this is a good start for now.

Photos: donatelife.net; rock star, zazzle.com; shoes, walkarlington.com; donatelife.net