What's Next?

I had just finished loading up my car with some stuff to take to the thrift store yesterday when a neighbor walked by with her dog and started to chat. She knows about my transplant and was asking how I was doing, if I was feeling stronger every day. I told her I was still doing rehab and, yes, getting stronger every day.

At that moment I felt something missing. What else am I doing that's worth while? What's next for myself?

Yes, I still need to take the time to do my rehab (physically, I still need to get stronger) and to make sure I'm giving my body plenty of rest. But then what? Part of me is ready to jump back into life! Although, admittedly, I'm not quite sure what that would look like right now.

The Complications aka The Trouble With Returning To Work

The problem with returning to work - even part time as I was working before - is that I would lose my federal disability. The disability that took me eight months to get approved for. Yeah. I am not taking that lightly. I got free help getting approved with a CF Foundation-sponsored lawyer the first time around but I don't know if that would be available to me again - and you need a lawyer to cut across the BS for this kind of thing.

I am allowed to work a little while still receiving federal disability, but it isn't much and it's "frowned upon" - I guess if you're disabled they want you to truly be sitting around not doing anything at all. (Well, of course with transplant it's different.)

Assuming I did not return to a paying job, I would ride out the rest of the two years left on my work long term disability (until Dec 2015) and keep my Aetna work insurance. At that point, there would be a gap I'd have to cover before the 2.5 year federal disability waiting period for Medicare would be up. So I would need to get Cobra or look for private insurance before my insurance would switch from Aetna to Medicare.

Any way you slice it, things ain't gonna be as easy insurance wise as they have been for me so far. (By the way, I received an "itemization of services" in the mail from Duke the other day. I have been saying all along that my transplant was free but I lied; out of about $555,000 of defined costs during transplant I end up owing $266. Not bad. And thank you, dog!)

Finding a Job That Fits

So what if I were to go back to work and lose my chance for Medicare after the time I would qualify for it? (In any scenario I keep my Aetna insurance until Dec. 2015.) For one I would need to find an employer who offered me insurance. This could be tricky because I do not see myself working beyond part time at this point. In addition to those reduced hours, I would need to find an employer who was understanding about me needing time off for doctor's appointments, health flare-ups, and who allowed flexibility to work from home when needed. The place also needs to be somewhere with not too many people and where I feel comfortable about people not coming in sick.

I'm not saying that would be impossible, just difficult.

The alternative is for me to find a place to volunteer on a regular basis - it would have to be a regular basis (i.e. job like) because already I can feel myself starting to go crazy not having something like that to do! Maybe I would go in a couple of days per week, possibly work from home some. Maybe even work for more than one place.

Now for the exciting part, thinking about what kind of work I would want to do!

Things I Can See Myself Doing (a bit of a brainstorm)

I'll bet this list will come as no surprise to any of you!

• Working with animals - while this is my first love, when it comes down to details it's not as neat as I wish it was. I always saw myself volunteering at Safe Haven for Cats (a really great no-kill shelter that I volunteered at long ago.) The problem with the "hands on" aspect of this is that I am not supposed to be around kitty litter. (It's one of THE big no-nos post-transplant because of a bacteria you can pick up.) Each kitty cage contains a litter box at Safe Haven, and, similarly, other places I assume. Also, I need to be super careful about cat scratches, so any strange cats could be iffy. So what about doing some kind of volunteer office work? Writing or website help? That would definitely be possible but, let's face it, it's far less fun when you can't be around the furry ones!
• Pet sitting - this is something I could do (cash under the table) for friends at first and maybe more as word-of-mouth spread. Again, no scooping kitty boxes so that would be limiting. Work would be sporadic and, probably the biggest problem, we want to start doing stuff on weekends and we like to travel (and want to travel as much as possible this year!)...all the times people would need me. 
• I could be more like a dog walker - someone who would check in on pets during the day, maybe even walk them. That would be good exercise! And checking in on kitties requires no kitty box scooping.
  
  
  
  
  
• Volunteering for an environmental organization - ah, my second love. I can see myself volunteering for an environmental organization. Again, I would love to offer my writing, website writing and design skills, organizing or any other help that didn't involve direct solicitation or too much other front-line work to either The Nature Conservancy or another local group. 
• Volunteering for another good, local organization whose cause I agree with. This gets more outside my comfort zone. Of course I love places like the women's shelter, but I'm not sure I would feel comfortable volunteering there.
• Becoming a Big Sister - this is something I've always thought about doing but never had the time to commit. I think it would be awesome to be a positive influence on a young person! I could maybe even stretch my brain and be able to help some with school work. :) The problem with this kind of work - any kind of work with kids - is that kids are germ factories! If they aren't sick they could be carrying something from one of their school mates. I can't avoid kids forever, but maybe this is something better left for after I'm not quite so immune compromised. 
• Nanny - Many of you know I nannied for years during college and for a couple of years afterward. I liked the work because of the families I worked for. This is something I could do again (again, for cash) but it would have to be the right situation. Again, there is the germ issue - I would not be able to work if the kid was sick. Ideally it would be a kid who was not also in daycare or school yet so not exposed to so many other germies.
  
  
  
• Lung Transplant Foundation/Donate Life NC - I've already reached out to Donate Life NC. They expressed interest in sharing my story, and I would like to offer them my help possibly as well. A lot of other post-transplant folks also become involved with the Lung Transplant Foundation, another great organization. I joke they are the post-transplant version of the CF Foundation because so many transplanted cystics raise money for them.
• I just looked on the City's website for volunteer opportunities and found a few other cool possibilities: Parks & Rec volunteer program, Recycling Block Leader (this has my name all over it!), and the Greenway Volunteer Program. More possibilities!

Photos: Universe of Possibilities, doklab.nl; Businessman, shutterstock.com; Work/Life Balance sign, lifeaftermaternityleave.com; Woman with Kitten Painting, tennysonlee.com; Dog Walker, thumbtack.com; Donate Life/Done Vida, donatelife.net.

The New Normal

There are many steps in recovering from a major surgery: the number of things you are hooked up to decreases, you get released from the hospital, slowly get strength back that was lost while sitting around in a hospital bed.

Also, in my case, there's been the small steps toward being able to eat normally again (still working on that), getting various tubes/stitches/staples removed (everything is gone except for my feeding tube) and completing 23 grueling sessions of pulmonary rehab in order to graduate - which I did the week before Christmas - yay!

Along the way, little slices of normal life start to insert themselves into the medical routine and they are oh so very welcome. Going out to dinner or a movie? Awesome! Putting up the Christmas tree? Hell yeah! A trip out shopping instead of buying on Amazon? What fun! (All of course done with my mask discretely in my pocket book ready to be deployed if need be.)

Are We There Yet?

Recently I have had some people ask me if things were getting back to normal. The answer to that is not straight forward. 'Normal' to me before surgery was days of fatigue, doing treatments and dragging myself to rehab. Rewind to a little over a year ago before I had to stop working and life consisted of mornings of drinking coffee and reading the paper while doing my therapy, going into work, coming home to do therapy and exercise, cooking dinner, watching some TV with Todd, doing my final treatment and going to bed. 

So what will life look like with no treatments and only having to remember my medication times throughout the day? (I am still getting used to that.) The answer is I have no idea and the possibilities are incredibly exciting to me!!

I would like to go back to mornings of reading the paper and drinking coffee before doing some kind of work (what that will look like, whether actually going into an office as a paid job, doing some freelance writing, volunteering somewhere or doing something else at home.)

Exercise will continue to be a big part of my life - I want to get back to being able to go on bike rides with Todd and go to yoga classes!! I might even finally be able to complete yoga teacher training like I had wanted to (not to teach but just to get deeper into the practice.)

I want to have an active social life again, going out with friends - I miss that! (Although I will have to continue to adapt to a basically alcohol-free lifestyle, regrettably.) I want to be able to go on trips out of town on the weekend at a moment's notice. I miss our mountain house so much I can't even tell you! And I miss going down to Todd's aunt's beach house at Holden Beach - it is so beautiful down there.

Speaking of Getting Away

Speaking of getting away, before any of that happens I want to plan a couple of trips. I want to go to Atlanta for a weekend to see my good friend who's moved down there. And I want to go to Cleveland to see my dad/step-mom and family - and hopefully my brother can also drive down from Michigan so I can see his family too (nephew Simon!!)

Todd and I are also starting to plan summer vacations. We have a friend's wedding in Vegas in April. We want to go to Montana sometime. And we are starting to think longer out (next year) about a trip to Belize or some place like that on one of Todd's brother's fishing trips. (That would require a lot of planning and preparation from an infectious disease standpoint but the docs have said that with enough advanced time it should be fine.) We also have good friends in Ireland that we would love to visit. So much to do!

So what am I waiting for? That's easy - two things: I'm waiting for my rejection (discovered during my bronch a month ago and subsequently treated with a large blast of steroids) to clear and for my Nissen stomach wrap surgery to be done. For the rejection, I had a follow-up bronch on Monday and I am awaiting the results. If I remember I will update this with them. If I am clear, plans will start being made! [Update: I am still showing mild rejection, although less than last time - this makes sense because my Prograf (my main anti-rejection medication) levels have still been low. My treatment will again be I the steroid treatment. This is also good, in my opinion, because it means they didn't think an escalated type of treatment was necessary.]

For the Nissen, I am supposed to get a consult with the surgeon soon and I am hoping that surgery will follow fairly quickly. The recovery from the Nissen seems to vary a lot between patients. Although the surgery is done laparoscopically, I am hoping that the pain will be lessened by the fact that my chest is still numb from the belly button up to my collar bone.

Anyway, that's the deal with me right now. I am awaiting the endless possibilities of what my new normal could be.

Oh, and I almost forgot: Happy New Year y'all!

 

Photo Credit: Egg @ doctor, www.andertoons.com; Amazon boxes, www.techlicious.com; Yoga hands, www.yogavibetenerife.com; Belize, www.belizethisway.com.

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

Laura got her lungs!!

 Note from Laura: I created this page for Todd to update throughout my surgery and the first part of my recovery. 
Note from Todd: There was a long delay recovering a changed password to allow me to compose this blog entry. I apologize. I will update daily until she is ready to resume her blogging.

Thursday Oct 23 2014

7:53 am (Laura)

Was awoken by a call this morning...maybe this will be the one! Feeling hopeful and excited right now. The only information I have right now is that the lungs are not high risk and that I will not know anything about the lungs until this afternoon.

I have hesitated to send out an email update recently...things have been very up and down and I have really been struggling (mentally, although also feeling pretty down/crappy because of bad anemia). However I did have a pretty awesome doctor's appointment on Tuesday! If you want to read more about what's been going on please check out my What's the Latest thread.

Anyway, off to the hospital soon!

1:57 pm (The rest of this blog entry written by Todd)

So far everything has been going very smoothly. Laura has a great attitude and we are all really positive this time around. We found out that the donor o.r. time has been pushed back to 6pm, so the earliest we will hear if the lungs are good will be after that. We should know for sure by 9pm. 

8:17 pm

The lungs look great. It is a go! 

We are very excited. It will be a long night. I will send out another update when the surgery actually begins, most likely in a couple of hours.

Yeah!!! 

10:39pm

Update: Surgery began 10:04pm. Everything is going well so far. 

Friday Oct 24 2014

12:54 am
About midway through surgery. Left lung removed and new lung in place. They are beginning to work on the right lung now. Everything is going smoothly.

3:15 am
Both lungs are in. Just talked with the surgeon and everything went great. Next step is for Laura to be zipped up and moved up to ICU around 4-4:30am. They will monitor her for an hour and then wake her up around 6:30. There is a shift change around then, so it may be as late as 8am before we can go in to visit.

7:16 am
Laura is now in ICU. She looks good. She is running a fever, but other than that she is doing great. They woke her briefly, before I got to see her, and she was able to follow their commands. The staff is undergoing the shift change now. I will update when I get news from the morning staff and get to talk to a doctor.

1:43 pm
Been a long morning/early afternoon. The plan is to stabilize Laura so they can place an epidural and then take her off the vent. The problem so far seems that when she is close to stabilized, she wakes up and gets anxious about having the breathing tubes. We are still waiting for the epidural which I hope happens soon for pain management. She is still running a slight fever, but that is nothing to worry about day of surgery.

 6:25 pm
Very long afternoon. We were asked to leave the room for a couple of hours while they placed the epidural (YEAH!), gave her a "bath" (yeah), and performed her first "bronch" (best way to inspect the lungs and check for any rejection). She is still intubated, but she is on the minimal setting the ventilator will go on and we hope she will be extubated soon (double yeah).

It was a long two hours with little knowledge about what, but we are all much relieved. Things are progressing and who knows, she may be up and out of bed tonight. 

8:53 pm
After a long wait for epidural medication, she finally got some good pain management quickly followed up by extubation!!! 8:45 pm, off the Vent! She was able to cough well and can speak with a weak, but cute as hell voice. She is breathing normally with her new lungs and her oxygen saturation is 100% without o2!

She rocks! 

Saturday Oct 25 2014

9:04 am
Laura had a busy, but good night. She had a scan of her new lungs and it looked good. She got a little rest, but not quite on a normal schedule yet. Her blood pressure is running a little low, so they are working on that, but nothing overly concerning.

The plan today is to place a picc line (for iv meds), get her up and walking, do a swallow study and see how close she is to drinking/eating again.

She looks great. Sounds good. Very responsive and alert.

3:18 pm

Good day so far. Laura just completed her first walk like a champion. She really did well. No need for oxygen and her lungs did great.

She also had an encouraging swallow study. She will have to wait until Monday for a full study with visuals, but the therapist said if she were to bet, Laura will pass.

Her voice is getting stronger. She is doing great.

And in other news, picc line was placed in-room. Very education process. 

All in all, great progress. Still need to solve the bp issue before moving to step down. I have a feeling she will do that in next day or so. 

Sunday Oct 26 2014

9:23 am 

Laura had a good night. She got some rest and had already walked a lap (400 feet) before I got here at 8. The doctors say that she looks great and the only issue is the continuing blood pressure/fluid volume battle. This is not unusual after this surgery. She continues to improve, but still has a little way to go. Nothing concerning. Her pain management is doing very well. She is comfortable, alert and very bright and cheery.

Goals for today include removing the first couple of chest tubes, which will probably happen very soon, walking more and most importantly stepping down from ICU. She will NOT be getting a bronchoscopy today! Small victories.

2:34 pm
Awesome morning/afternoon. Laura walked another lap. Her BP is getting better all the time. She had her second daily PFT (Pulmonary Function Test) and it was up 10% from yesterday, which is great. She had 3 chest tubes removed. There are others that will be removed in a few days, but these included the two largest ones. Her voice getting better. She really wants to start drinking water, but we will have to wait until tomorrow for the swallow test.

Oh yeah, one more thing, she is being moved to Step Down! Yes, that is right in under 60 hours she will be leaving ICU.

Monday Oct 27 2014 

9:39 am

Laura has a busy and unrestful night. They had her on an insulin drip so they were checking her blood sugars every hour. So she got pricked every hour all night long. Otherwise, she is doing great. She walked a total of 4 laps yesterday. The goal is to walk 20 laps in a day (A little over a mile). 

She is slowly getting unhooked from things. Yesterday they removed 3 of her chest tubes. This morning they removed her insulin drip. 10am is the last hourly blood sugar check, then they will go back a more reasonable schedule. Her blood pressure is doing well. They no longer even have her cuffed to automatically check it. She has is no longer wearing her pulse ox which measures her oxygen saturation. It is amazing that she is not only not using oxygen, but that it isn't even monitored unless she is walking.

The big step today is the swallow study. They should be doing that soon. She really wants to pass that. Being able to drink something is really the only thing she misses right now. Maybe even more than her kitties. No, that isn't possible. Sorry for even suggesting that Gus and Diosa.

Other than that, more walking today. 

10:53 pm

It was an eventful day. Some tough spots, but mostly really positive. It is hard to believe how quickly Laura has been improving.

The swallow study went very well. She didn't pass all the tests, but she passed the important ones. She began on thick liquids this afternoon and also passed the soft food test, so after one more gastric study tomorrow, she should be able to begin eating. They will redo the swallow test on Weds and we hope then she can have thin liquids and/or solid food. Today's result is a huge relief. Looks like she will avoid the dreaded feeding tube.

This afternoon we got moved to a larger corner room on the same floor. It has a great view of some green area with a few pines and a old willow tree. It is hard for me to articulate how much more this room radiates positive vibes when compared to the previous room. A very welcome move.

As I mentioned this morning, she was super tired today from lack so sleep (and just maybe a huge freaking surgery). She was lying down nearly all morning. After we moved rooms, we finally got around to attempting her first walk of the day around 2pm. It was rough. Laura kept getting dizzy. She would only make it a few short steps and have to stop and sit down. She finally gave up after about 30 feet and we wheeled her back in a chair. She was frustrated that something out of her control, this dizziness, was hindering the walk. Also, it might have seemed to her that we didn't appreciate what she was going through. This really stood out to me, mainly because this is the first time since the surgery that I have seen any frustration from her at all. She has been so positive. She is an impressive person. I am so lucky to have her.

Laura's surgeon, Dr Daneshmand, ran into us during this aborted walk and gave Laura some encouragement. He mentioned some possible causes for the dizziness. He said that it really is common and also gave some instructions to help with it. He was very impressed with her progress and especially the strength of her new lungs. He said she must have had a great surgeon. Yes, he is a jokester and overall a great guy and a wonderful surgeon. We were lucky to get him.

After we got back, Laura decided to sit up in her chair for a while. After an afternoon filled with starbucks iced coffee (no ice + thickened), gatorade g2 (grape and tropical punch, both thickened), various dressing changes and numerous other items, Laura felt up for another attempt at walking at 6:30pm. This time it was like a completely different person was walking. She experienced no dizziness. She walked a faster speed as the previous days. She completed 3 laps (900 feet) with only one rest. Amazing recovery from earlier. 

Tomorrow, she may get to eat for the first time since Thursday morning. I wouldn't be surprised if she walks a half mile.

She is rocking this!

Tuesday Oct 28 2014

5:05 pm
Well, I spoke too soon yesterday. We just just the results of the gastric study and it seems that Laura's stomach is not quite working well enough for them to trust her to eat yet, so it will be the dreaded feeding tube. She has been dizzy/nauseous most of the day, but seems much better after an afternoon nap that coincided with a dose of medicine. Now she is up and sitting and looking forward to an afternoon walk.

Laura got one of her remaining 4 chest tubes removed. She is down to three, when she had 7 leaving surgery. This is good progress.

She has not walked yet today. She ended up having to lie down for the gastric study, which could have biased her results. She does feel much better right now and is ready to walk in a few minutes.

Her voice is getting better each day. She is looking great. She is making progress and nothing unexpected has happened yet. They will redo the swallow test tomorrow and her gastric study again in a couple of days. She will be back to normal drinking/eating in no time.

Wednesday Oct 29 2014

8:13 pm

Today was a crappy day. Very little progress, but more importantly no big set backs.

Laura got some sleep last night. Today she was light headed and dizzy anytime she was upright. They are working on medication changes and it should improve with time. This is not at all uncommon.

The dizziness did cause the first attempt of placing the feeding tube to be aborted. Nothing bad. She just started feeling light-headed when they had her waiting in a wheel chair for nearly a half hour in a waiting room. They brought her back to the room. She rested, sat up in a reclined position for a while and they wheeled her back down in a bed. This attempt was successful. The plan is to start slowly feeding her this evening and see how she handles food.

She has also been very low in energy. I am sure it doesn't help her last semi-meal was 6 days ago. I can see her energy diminishing each day. Her blood pressure is running low and that along with medications is causing the dizziness.

She has been feeling a little shortness of breathe when upright. Her oxygen is great and everything shows that her new lungs are still working great.

Pain and discomfort is becoming an issue. She still has a few chest tubes and they are starting to bother her causing back pain. Heat pads bring some relief and they just approved tramadol which should she uses for back pain at home.

She didn't get to walk today. Dizziness proved to be too problematic.

On a positive note, she will start getting nutrition tonight. They will redo the swallow study and gastric study in the next day or two, so there is a chance she will be back to normal food/drink soon. They have changed some medications that should help with pain and dizziness. And they resumed allowing her some thickened liquids again this afternoon.

Overall, her attitude is still great. In the grand scheme of this huge undertaking, she is doing great and has not had any major set backs. Everything that has occurred, we were prepared for through our orientation and education classes. I have also heard from so many people that have gone through this that have told me, a lot of these same things happened to them. Laura loves to know that.

It is great to hear from all of you. When Laura is feeling especially good, I have been reading her everyone's responses. She really appreciates it. It is the next best thing to getting visitors, which she still is not quite up to. So, please feel free to respond. I will read them to her. She especially likes to hear stories from other transplant folks. It is encourages her.

Thanks everyone. You are all really so supportive. We are hanging in there. This is the tough part. No one told us it would be easy. I can't wait to see her get up to speed.

Thursday Oct 30 2014

6:32 pm
Today was better. Laura was still having some low blood pressure issues in the morning, but she was doing much better this afternoon. She was sitting up most of the day and she really seemed to have more energy. They started giving her nutrition last night and it seems to help.

There were no studies done today. They want to hold off until Monday to redo the gastric emptying and swallow tests. It would be sooner, but they do not do those studies during the weekend.

She hadn't walked yet today, but she was raring to go when I left around 5pm. Nate (her brother) arrived today, and I bet that he will inspire a long spirited walk this evening. Maybe two walks.

A few details for those who do not know. Her surgery did not require the breaking of any ribs or the sternum. So, there are no broken ribs to deal with. She still has three chest tubes which are still draining enough to leave in, but one or more could be removed as soon as tomorrow. The goal is to have the all removed before the epidural is removed. The epidural will be removed either tomorrow, or let's hope not until Saturday. After it is removed they will switch to oral pain meds.

They will be ramping up her feeding to make sure she is tolerating food. When I left, they had swapped the food out for one with fewer carbs and had to start over at the low speed. Even that low amount is making a difference.

Small steps today, but all progress. We had some training today about how to handle some things when we get home. It is always good to hear they are starting to plan discharge. We are still at least 5 or 6 days out, but it is closer every day.

Also, on a lighter note. Laura was allowed a couple of stuffed animals (that represent some of our current/past cats). I had to sneek them home to wash them, bag them, and then bring them back. It was nice to surprise her.

I really feel the corner is turning. Still fighting low blood pressure, especially in the mornings, but it improving. The surgeons say it will just take time.

Saturday Nov 1 2014

11:55 am
Sorry for the delay. Yesterday the big news was that Nathan arrived from Michigan. Laura really perked up when he got here. She was a able to walk a little, but got dizzy after a lap. We checked and be bp was good, so the dizziness is a mystery. Could be medication related. Could be that she went directly from nap to walking in record time. Needs to be a more gradual change.

They were a little concerned that around Weds, her white blood cell count began to creep back up after it had been steadily declining since surgery. They did a CT scan and some blood cultures as well as some cultures from a bronchosocopy. So far the only bug showing up is her "super psuedomonas" which we all knew she would still have in her airways after surgery. This is a good thing since they already had a plan in place to battle that bug and they started her on inhaled colistin and a couple of ivr abx for that purpose. Her white blood cell count is starting to trend back down each day, so it doesn't appear to be any infection.

Laura had a frustrating evening. She was ready to walk again, but the hallway was off limits due to heavy duty cleaning. By the time it was available, she was feeling dizzy/nauseous so she was unable to get a second walk in. This is part of the frustration right now. Everyone is preaching "walk walk walk", but there doesn't seem to be any time to get them in. There is so much prep work involved with the ivr pole, chest tubes, catheters, feeding tubes, etc. And just when you think it is a good time to tackle the task, it is time for medicines, or a chest xray, and then Laura is exhausted again.

This morning they pulled the epidural. She had it for a little over a week, which is as long as they like to keep it in. Any more than that and there is an infection risk. Without it, the plan is to transition her to oral pain meds. At least that is what we thought, until a nurse informed us that the order had been canceled by the pain team and all she had available to her was tylenol and tramadol, when the original plan had been oxycodone. We are trying to get that straightened out.

Regardless, Laura still was motivated enough this morning to walk. She made one lap under pain. She has no epidural and 3 remaining chest tubes. They want her to walk more before removing any more chest tubes.

Things are moving slowly, as you can tell. No setbacks, but it is getting harder and harder to make progress. She is motivated, but frustrated.

7:59 pm
Laura has really been motivated today. She really gutted out a walk this morning after the epidural was removed and before alternative pain meds were given. The pain med snafu was resolved after a few hours, and she was finally given oral meds. She walked a couple of other time this afternoon. Each walk was stronger than the last. Her blood pressure and dizziness seems to be getting better.

She really pushed herself today. I was so impressed. Her exertion each walk, in my opinion, was like a re-hab session. How she was able to rest up and go at it again is unbelievable. This is the hardest thing I have ever seen anyone go through and she is facing it and just knocking it out of the park. The only thing that has held her back to this point has been the dizziness. Completely out of her control.

I was reminded this evening about how good Laura looks. It is easy for me to forget since I see her each day, that she in many ways looks incredible. Today we swapped out her hospital gown for some pink jammies. She is so much more mobile than you could imagine considering how soon it is since surgery.

Sunday Nov 2 2014

6:53 pm
Another good day. No low blood pressure issues. No dizziness (until a ride in the wheel chair for x-rays).  She seems to better on the new pain meds. She is much more mobile. Can walk on her own to the bathroom with help getting her chest tube basins moved and iv pole. She is much more chipper, excited and ready to rock and roll.

No news today on the white blood cell count. Not sure how that is holding out. She did get c. diff, so that was uncomfortable and is being treated. No chest tubes were removed today. The doctors keep preaching that she will need to walk more before things progress with the chest tubes, feeding, etc. Walking is considered the miracle drug.

Laura's walking is continuing to improve. Each walk, she is stronger than the last. She can go for several laps without even much of an increase in heart rate. Yes, the "pre-hab" is paying off.

She walked 3 laps early this morning. She followed that up with another walk of 5 laps in the early afternoon. This is a total of 2400 feet, or nearly a half mile. She was about to walk again when I left, and may try to get another in by the end of the day.  To compare, yesterday she walked 3 times for a TOTAL of 5 laps. She is on pace to triple that today. I hope that makes the doctors happy in the morning. I know I am impressed.

Tuesday Nov 4 2014

10:38 am
Overall, Laura is doing great. She is recovering more of her strength and attitude. She is kicking ass walking. She finished Sunday with a total of 12 laps (3600 feet), walked 20 laps yesterday (6000 feet, well over a mile) and has already completed 7 laps (2100 feet) before 9am this morning. She walks further and with more pace each time out.

They removed another chest tube yesterday. That leaves her with two. They are planning to remove another tomorrow.

She failed her gastric emptying study yesterday. This is not unusual after lung transplant. What this means is that they will place a G-J tube so we can continue tube feeding when she gets home. They say it will all just take time to everything working properly. With her activity level, it will not take too long.

Pain management has been good. She is resting comfortably, when she is left alone. She is napping now after that long walk this morning. Yesterday, she didn't even let a cleaning detail in the halls stop her. Instead she walked to another ward, did an additional lap there, and then back. All in all, it was over 1500 foot walk and a nice change of scenery.

Her white blood count is dropping nicely. No new bugs have shown up in cultures. She seems to be recovering well fro the c-diff. They did another bronch yesterday. No word on the cultures taken yet.

We are still looking at discharge by the end of the week. They are transitioning her to home medications where possible. She misses her kitties (and dorks, aka as dogs), and that motivation is driving her to walk walk walk. The doctors were pleased for the first time this morning with the number of laps she walked yesterday. 20 is their magic number. I doubt she stops at that distance today. 

Wednesday Nov 5

10:52 pm

The last 30 hours or so have been quite the roller coaster. Laura had 12 laps under her belt before the wheeled her away for G-J tube placement yesterday afternoon. The surgery knocked her back. She was very groggy and unsure on her feet when she returned. No more walking for the day. It was hard enough to maneuver around to the bathroom.

She had a scary night. There was a miscommunication after surgery and she was put on gravity drain on her G-tube, instead of suction. Well, this caused some drainage in the middle of the night from her J tube. This caused a huge mess and (almost literally) scared the shit out of Laura. The mistake was compounded by a doctor mentioning somewhat callously that perhaps there was problem with the placement of the tubes. By the time I got to the room, Laura was very stressed out. She was still feeling weak, tired and light-headed again from the surgery the day before. Things just seemed to spiral out of control emotionally, but somehow Laura gutted out three short walks throughout the morning and early afternoon. 

The doctors said that she was low on red blood cells, so she got a couple of transfusions. After the second one, she regained her strength, her light headedness was gone and she went on a long walk that match the distance of the previous 3 walks combined. That was around 8pm. I just got a message from her that she reached the impossible goal of 20 laps in a day. Incredible considering how the day began.

Highlights (or low-lights from Laura's perspective) from today include another broncoscopy, which the surgeon Gustavo, allowed me to look through the viewer to see Laura's lungs. I am happy to report that they are nice and pink with almost no secretions. I think he was showing them off to me.

Laura was due to have a follow up Fees study (swallow) today, but when she told the team that she wasn't at her best today, they postponed until tomorrow. I am sure she will be at her best tomorrow. I hope she passes for thin liquids. She has to be tired of the thickener we put in all her drinks.

Laura is feeling short of breathe today. The surgeon told her she is just feeling the effect of the surgery and she needs to trust the numbers. It is hard to retrain her brain to accept that she is getting enough oxygen, but she keeps her saturation pegged at 100 most of the day.

Tomorrow they plan to take one of the last two tubes out (we have heard this line a couple of times now), and they are also going to rerun the Fees test. They say that they are now looking at a Monday discharge. As long as the doctors are talking discharge, I couldn't care less what day they mention. A long recovery is not a bad outcome and this is nowhere close to what a long recovery can look like. 

Thursday Nov 6

9:50 pm 

Laura has had a good day. She started out strong this morning and was walking faster and farther than ever. The doctors did not remove a chest tube today. Again, the constant refrain is that one will be removed tomorrow. They are just being safe.

Speaking of being safe, she barely failed her swallow test for thin liquids. It was so close. But to err on the safe side, only thickened liquids for the time being.

Her attitude today was much improved. She is ready to get this part of the recovery over and get home.

Still looking a discharge early next week. 

Saturday Nov 8

10:31 am 

Laura has been steadily improving. She seems to be on pace for an early this week discharge. We haven't seen the surgeons since Thursday, so it is hard to get a more accurate picture

We have heard that the surgeons have been super busy. Laura's transplant was during a rush of 8 transplants in 9 days. That is only counting lung transplants. The pace is still crazy. We heard yesterday that they had two double-lung+heart transplants in 3 days Usually they only do one of those huge operations every 6 months. Laura has a good idea who those recipients are from her pre-hab sessions. Also, the fellow, Gustavo, that usually checks in on Laura each morning before the team, and does her bronchs, has been on lung procurement trips the last two days. That is why we did not see him yesterday until late. I hope it was not another dry run like the one Thursday was. When Gustavo came by in that afternoon he told us he had been in Michigan to get some lungs since we saw him in the morning, but they found the donor had lymphoma. Dry run.

Laura walked 22 laps Thursday and 25 laps yesterday including a marathon 10 lap session to start the day. 18 laps is a mile.

They were ready to pull one of her chest tubes yesterday, but found a small air leak. Nothing concerning, but they are keeping it in for now. The last chest tube is slowing down and should be ready to be pulled in a day or two. The removal of these chest tubes is the final hurdle she has left to clear before heading home.

Her tube feedings have improved and she is getting full nutrition now. They removed the drain from her G-J tube yesterday. She is no longer on any ivs other than her twice daily iv abx. Most of the day, the only things she is hooked up to are her feeding tube and the heart monitor (and chest tubes). When she goes home we will transition her to night feedings and she can disconnect during the day. It will be so nice to see her completely unconnected.

Laura did have an unrestful evening as they worked to unclot her picc line. This proved successful and they were not forced to place a new one.

All in all, things are getting better. I am sure she would say they are not getting "easier", but they are getting better each day.

Sunday Nov 9

3:10 pm 

The final two chest tubes were both removed today at 2:45pm. Everything is pointing to going home tomorrow. It will be a busy day with lots of training and education. I have never been so excited to learn something new.

Overall the progress has been good. More walking. She is having a reaction to one of her inhaled antibiotics. It causes her to be short of breathe, wheeze and even lose some of her voice. She noticed that it gets better after a few hours, so today she did the treatment early in the day hoping the afternoon would be better for walking. She also lobbied for an albuterol inhaler to use to help combat the shortness of breathe, and she got it.

Laura was so excited when the doctor came in and asked if she was ready to get the chest tubes out. Neither of us could believe it was really happening. She really wishes she was up to texting, but her head is still in that post-transplant haze that makes it hard to do tasks like that. Just know that she wants to share the news and I will relay any messages to her.

Monday Nov 10

4:46 pm
Half-way to the door. It seems like everyday we clear one hurtle and then find another. Last night, Laura started having stomach discomfort and they dialed back the feed tube rate. This morning they told us that they would like her at her goal rate for nutrition before going home. They changed formulas and restarted at a slower rate. They up it slightly every 8 hours and if all goes well, she may be at goal rate tomorrow. If she tolerates that, she is good to go home, unless another hurtle appears over the horizon.

They pulled the find two little bobble drains today and she had a bronch by our favorite Gustavo. Again, he let me view her lungs. Still looking great.

We had a talk with one of the respiratory therapists to help us understand the numbers from her PFTs (Pulmonary  Function Tests), and he said that all the numbers are well above the range they like to see after transplant. Very reassuring.

Also reassuring was Dr Hartwig this morning. Even though he did break the news about the tube feeds, he did say that everything else is looking great. Her lungs are holding up well without the chest tubes. She is ready to go home, if only she can get her digestion back in order to get proper nutrition.

She is having a very strong day. 2 walks of 10 laps each. More planned for later, although she has reached the 20 lap goal for the day.

Tuesday Nov 11

1:09 pm
It looks like today is the day we are going home. Laura has been tolerating her new feeding rate well. The doctors were all pleased with her progress and have given her the go-ahead to get out of here.

We have had lots of people come by to help educate us on home care. She is scheduled to have her final iv abx in the hospital at 4 (although it may be early) and then we should be ready to leave. We are also waiting for her first load of medications for home. Her printout for daily meds is several pages long.

Thanks for all of the support. I appreciate it and Laura does as well. We are more than ready for the next step on this journey.

Thursday Nov 13

5:08 pm
Laura got home Tuesday evening. That night was very hectic between learning tube feeds and setting up a crazy iv schedule for the night. We also had to take over the administering of all her medications. Well over 50 pills a day. Amazing how much we depended on the nurses to keep everything straight. It was really overwhelming. 

Wednesday things improved. We got her iv rx changed from a 3 hour infusion to a half-hour, which is the same as it had been since July. Same med, same schedule. Not sure how long she will stay on it, but it will be only a few more weeks.

We had out first appointment back in Durham on Weds. 10am we had an orientation for the post-transplant rehab. It went well. Laura did a 6 minute walk, some sitting exercises and a bike for another six minutes. She will begin rehab in earnest on Friday.

Today was clinic day. She had labs, blood draws, chest x-ray, and then followed by appointments with nutrition and her transplant doctor. Laura decided to walk into clinic from the car. That was some accomplishment. The appointments went well. We have a plan with nutrition to cut back from 24 hour feeds to 21 hours to give her a break during rehab each day. The doctor visit was even better. He approved her use of Narco for pain, discontinued the lasix, and told her she can start eating small amounts of food (pudding consistency) for pleasure. All of these were big victories for Laura, but none brightened her day as much as his impression of how good she is doing. He showed off her chest x-ray. Was gushing over her blood gases. Said she would not need to give any more nasty arterial blood draws. He was very impressed with her PFTs. All in all he was grinning from ear to ear and that made Laura's day.

Updates will be less frequent coming from me. I am hopeful that Laura will be up to taking over the task of blogging soon.