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?

 

 

 

Happy 1-year Lungversary to Anya!

I can’t believe that it was exactly one year ago today yesterday that Anya got The Call for new lungs and was transplanted!  It really does seem like a long, long time ago.  I guess mainly because we’ve done a lot since then.

I’m happy to say that things are still going pretty well since transplant.  We’ve been home for 6 months now.  During that time, Anya’s had quite a few doctor’s appointments with her new (old) transplant team at Inova Fairfax.  Every doctor on the team wanted to get an assessment and see how she was doing since the last time they saw her before her 2nd transplant.

When we left Virginia to go to Houston last August, Anya was in the Inova Fairfax ICU fighting off an infection.  At that time, I’m not sure if any of the doctors thought that they’d ever see her again because she was in pretty bad shape, but SURPRISE….

The entire transplant team at Inova Fairfax played such a huge part in getting Anya over to Houston Methodist for an evaluation.  After visiting so many different transplant centers over the past few years, it made us realize how lucky we were to have such a wonderful team in our own backyard.  We can’t thank them enough.

So, how’s Anya doing?  The main problem that we’ve been dealing with post-transplant is her airways narrowing.  Bronchial stenosis is the official term for what she’s dealing with.  Due to the trauma and lack of blood supply to the new lungs during the transplant process, the airways sometimes get kinda flimsy in certain areas due to the prolonged healing period.  It doesn’t happen often.  I think it happens in about 15% of transplant patients, but one of the treatments for bronchial stenosis is a procedure called a balloon dilation (or dilatation) where the doctor puts a rigid bronchoscope into the airways and dilates the airways back up to their normal size.

Anya has had a bronchoscope, on average, once every 2-3 weeks since transplant.  We counted and she’s had roughly 30 bronchoscopies this year alone.  The narrowing of her airways causes several problems, like the inability to clear mucus from the lungs, which leads to infection and reduced lung function.

Luckily, the Inova Fairfax transplant team works with an awesome pulmonary interventionalist that deals only with these lung related issues.  He joined the transplant team some time after we left for Houston.

For the past 6 months, she’s been getting balloon dilations from this doctor, but her airways would eventually close again a few weeks later.  One thing that the doctor noted was that she continued to have an abnormal amount of mucus inside of her lungs, even though the cultures showed very little fungal and bacterial growth.

In early November, after one of these routine bronchs, Anya developed pneumonia and required a 6 day hospital stay.  It was rather scary going back into the hospital again and going on oxygen for about two weeks.  Especially after her lung function dropped down to about 41%. But after another bronch 2 weeks later, things started getting better.  So over the past month and a half, after her hospital stay, the team has been more aggressive with the treatment of this lingering infection (staph and aspergillus…two common bacterial and fungal infections in CF patients post transplant).

As of this past Monday, it looks like the infection is finally clearing up and her airways are maintaining a semi-normal size.  The bronch doctor told us that we don’t have to do another bronch for 6-8 weeks, which is a record.  Anya’s lung function is currently at 61%.  Her highest lung function post 2nd double lung transplant was 72%, so we’re getting back to a nice number.  And no more appointments until the end of January!  Woohoo!

Have a great new years everyone!

A picture says a thousand words….so here you go:

 

J-Tube & Bronchoscopy

Anya is still in the CCU.  We’re on day 6 now.  She is alert, awake, coherent, like her normal self, except she just can’t breathe, which is causing a slew of other problems like lack of sleep, nausea/dry heaves when eating, and pain.  Her lung function is probably down to about 13%-15%.  Her last CO2 levels are around 59 (normal 35-45).  She’s still on 35-45 liters of oxygen.  She’s down to 82 lbs now.

The doctors have not seen enough progress, so they are going to be a little more aggressive with their treatment.  This morning, Anya is going to be intubated and put on a ventilator while they put a Jejunostomy Tube (J-tube) into her.  The J-tube should help with her nutrition, since she has not been able to get enough calories on her own.   She can’t possibly eat enough on her own to counteract the amount of energy that she’s expending just to breathe.

In addition to the J-tube, they are also going to do a much needed bronchoscopy.  Hopefully, a flush of the mucus in her lungs will help her breathe a little better.  The idea with both of these procedures is to get her stronger and rely on less oxygen, which will help her fight off this infection a little easier.

One of the big risks of being put onto a ventilator in her state is that she will not be able come off of the vent on her own after the procedures.  There is also a risk of pneumonia due to the forced air going directly into her lungs.  The upside is that after the procedure, the doctors can control how much and when she eats by putting liquified food into the J-tube.  This procedure should also help with her nausea and dry heaves.

The bronchoscopy should help with her overall breathing.  She was at 19% FEV1 last week and she’s probably more like 13%-15% now.  Hopefully, clearing some of the mucus in her lungs will bring her back to the 19% area.

Please continue praying for Anya and thinking about her.  She’s pretty scared and needs as much strength as possible right now.