Sigh.

Anya wanted me to write an update.  Where do I start?

Well, we got married!  July 23, 2016.

anya-mike-family561-x3

It was hands down the best six hours of my life!  Our life.

Months and months of planning, from the DJ’s playlist to the kid’s shoes to the color of the hydrangeas…we got it done.  And when I say “we”, I really mean Anya, and of course our awesome wedding planner, Heather.

People kept telling me that the day would be a blur, but I didn’t believe it.  Sure enough, it was a blur.

Also, I really thought that I was going to be nervous, but when the time came, my nerves went away because everything felt so right.  I married my best friend.  My partner in crime.

I couldn’t have dreamt of a better day, but I knew deep down inside that Anya wasn’t feeling too great.  She was having trouble breathing the days leading up to the wedding.  It was on my mind all day.  We both knew that she should’ve been in the hospital 3 days prior.  Instead we decided to wait until after the wedding to take her to the hospital.

After the hoopla died down around 11pm, Anya’s parents took us back to our house.  We were supposed to spend the night in the hotel, but Anya just wasn’t feeling up to it.  On the car ride home, Anya was dry heaving…partly from exhaustion, but mainly from the lack of oxygen over the past few days.

Before we went to bed, I asked Anya if she wanted to go to the ER that night or wait until the morning.  She said “morning”.  By 2:30am, she woke me up and told me to call the ambulance because she had a splitting headache and she wasn’t feeling right.  She hadn’t slept all night.

The ambulance promptly came and whisked us away to the ER at Inova Fairfax hospital, our home away from home.  By that time, Anya was hypoxic — her lungs weren’t processing enough oxygen causing a toxic buildup of too much CO2.  When we got to the ER, Anya was pretty much out of it.  It was a scary night.

The ER team decided to put her on bipap to help her remove the unwanted CO2 and replace it with oxygen.  It kinda worked, but not fast enough, so the transplant team made the decision to intubate her the following morning.

It took about 24 hours, but being intubated and on the ventilator helped rid her body of the bad CO2.   This all happened on the day after the wedding.

By the third day post wedding day, she looked a lot better.  She was awake and alert, unable to talk, but physically, she looked a lot less distressed.

Fast forward 7.5 weeks, Anya has been in the ICU this entire time.  We joked that this is exactly how we envisioned our honeymoon to be!  She’s currently fighting a mycobacterium infection, pseudomonas, and chronic rejection.  She’s been on a ventilator this entire time.  She’s completely awake and alert, eating and drinking (past few days), and walking but it’s just that her lungs aren’t doing great again.  Yeah, it sucks.  Bad.

Walking

We’re still hopeful that she can get off the ventilator at some point in the near future.  She’s been walking around the ICU floor almost daily.  She got up to a mile last week.  Eighteen laps with her ventilator in tow.  I’ve never seen anyone with so much heart.  Physically, she is pretty strong, but every time they take her off the ventilator, her CO2 levels elevate.  Her lungs just aren’t strong enough right now.

I’m not quite sure where we go from here.   What I do know is that Anya needs some support right now….Thanks for reading…

Sup?

 

 

 

Post Transplant – Days 22 – 27

Crazy that we’ve been here for four weeks already. Yes, we’re still in the ICU. It’s getting a little frustrating.  Okay, maybe a lot frustrating. The transplant team cleared Anya to leave, but there is a holdup with insurance now. They denied the transplant team’s first request to be moved over to Kindred about two weeks ago.  No clue why they would want to spend more money keeping us here in the ICU versus kindred. I’m sure they have their reasons. Whatever they are.

So, Anya’s been doing great. I can honestly say that at this point, I feel like she is in the best shape that she’s been in since we arrived in Houston.  Her breathing is great, that “pleural effusion” discovered in the X-rays last week is totally gone, and that bacterial infection did not show up in her cultures so they discontinued the new antibiotic…the only thing that remains is the ischemic injury in the left lung, which is getting “much better” according to the doctors.  The team is ready to release her to Kindred, so I think that speaks volumes.

Anya enjoying the sunshine with her awesome physical therapist, Chris.

Anya enjoying the sunshine with her awesome physical therapist, Chris.

I don’t think that we’ll be at kindred for very long once we get there.  Anya’s been walking like a champ.  For two days in a row this past weekend, she walked several hundred feet without stopping and barely got winded.  The walking is not the surprising part because she was walking a lot more at Kindred pre-transplant, but it’s the “barely winded” part that’s amazing.  It’s been a while since Anya has been able to breathe like this.  It’s such an amazing sight to see her breathe so much easier.

I think almost all problems have been resolved so far.  The transplant team is planning on doing another bronchoscopy tomorrow afternoon to clean up the lungs and see how the ischemic injury is healing.  If they like what they see, then I think the next step will be getting Anya off of the ventilator completely.  I don’t think she needs it now, but they are keeping her on it to help her lungs heal faster.  If she gets off of the ventilator completely, then I think insurance will move a little faster getting her out of the ICU.  I’m hoping that we leave here before the end of the week for Anya’s sake.  She’s really been struggling with life in the ICU.  Four weeks in the ICU will drive any sane person crazy.

Other than that, there’s not a whole lot that has happened.  They did remove the IV line in her neck and replaced it with a central line catheter in her left upper chest.  The latter is a more of a longer term IV line where they can draw blood and administer medicine for the next several months while Anya continues to recover from the infections and the surgery.  The IV line that was in her neck after the transplant is not something that you want to leave the hospital with, due to the high risk of infection.

That’s about it for now.  Hopefully, in the next post, we’ll be over at Kindred.

Here’s Anya talking to her sister and Parker for the first time in about 3 months with the help of a Passy-muir valve:

 

 

Post Transplant – Days 18, 19, 20, & 21

Things are going well.  Anya’s been walking like a champ.  Today, she walked about 300 feet stopping only once to look outside of the hospital window.  It’s been a long time since she’s been able to walk this far, this fast without getting winded.  It’s pretty amazing really.

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I think the pulmonary arterial stent helped.  It opened up the blood flow to her left lung allowing her to push her new lungs a little harder.  The proof is in the walking.

The pulmonary doctor performed another bronchoscopy on Anya on Monday.  They sucked away quite a bit of the dead white tissue inside of her new lungs, revealing the healthy lung tissue.  They said that it’s going to take a few more weeks, perhaps.  There’s no real timetable on how fast her lungs are going to heal, but they are encouraged by what they’ve seen recently.

A few other things popped up over the past few days.  Her chest x-rays showed a splotch of fluid around her right lower lobe.  The doctors ordered a CT scan which revealed some pleural effusion which is just fluid between the outside of the lungs and the inside of the chest cavity.  It wasn’t a significant amount of fluid, but enough for them to investigate.  The doctors determined that they were just going to leave it alone.

Pleural effusion a few weeks post transplant is not an uncommon thing and usually the fluid just gets reabsorbed back into the body once the nutrition and movement comes back.  Anya  mentioned that she had this same thing happen to her after her first transplant and the doctor used a big needle to extract the fluid but there’s a risk/reward ratio that the doctors at Methodist don’t feel is worth it at this time.  From what I’ve read, the pleural effusion is not uncommon and usually harmless.

The other thing that popped up is that there’s a new bacterial growth in her lungs from the bronchoscopy on Monday.  They don’t know exactly what it is yet, but they are waiting for the daily culture reports from the lab.  In the meantime, they’re putting Anya on a new antibiotic until they determine the actual bacteria that’s growing.  The doctor told me that it may just be something picked up from the room air during the procedure.  I’ve seen them do the bronchs and sometimes the long black tube that they use to put into her lungs touches the bed or a glove or something that’s not fully sanitized, then they put everything in a jug and send it out to the lab.  The doctor said that so long as the bacteria doesn’t show up in the culture report then he’s not going to worry too much about it for now.  I think once Anya’s lungs heal, it’ll be harder for the bacteria to stick to the walls of her lungs. Right now, the white stuff and the mucus in her lungs make it easier for the bacteria to grow.

So, we’re moving along here.  The doctor said that Anya will most likely make the move over to Kindred by Friday or early next week.  Anya wants to stay for the weekend, at minimum.  We have a bronch scheduled for tomorrow and then another one on Saturday.  The main thing is that they’re still waiting for the inside of her lungs to heal.  They’re doing pretty much everything they can to facilitate that process.  Once they feel comfortable with the progress then I think they’ll get a little more aggressive with the physical therapy, weaning Anya off the vent, and ultimately sending us home.  I don’t feel as though we’re too far away from that point now.

Walking with her PT, Chris

Walking with her PT, Chris

Some friends from the weekend (from top left: Darlene, Colette, Sharon, Quentin)

Some friends from the weekend (from top left: Darlene, Colette, Sharon, Quentin)