Sigh.

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

Well, we got married!  July 23, 2016.

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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?

 

 

 

“Oxygen is Overrated”

I went to my niece and nephew’s swim meet this morning (Go Sully!), and I saw this sign hanging by the bleachers.

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Typically, I let Mike take the reigns when it comes to writing the blog posts, but this sign really struck a nerve today. These kids, swimming their little hearts (and lungs) out have no idea how lucky they are!

Officially, it’s been 368 days since we arrived back to Virginia from our time in Houston. Although so much has happened over the last year, some things still remain the same. Unfortunately, airway stenosis has continued along with receiving several bronchoscopies over the last year – both in the ER and the bronch suite – that have attempted to open up and expand my airways through the use of flexible and rigid bronchoscopes. Typically, through the use of balloon dilation and cryotherapy (a form of thermal tissue ablation, i.e., the application of repetitive freeze/thaw cycles that cause tissue damage and destruction), my airways still only remained patent for two weeks, on average. As Mike mentioned in his last post, Inova Fairfax hospital has an amazingly talented and tenacious interventional pulmonologist who decided that bi-weekly bronchs, which sometimes can take all day and require anesthesia, are no way to live a life. In February, he made the decision to try a semi-permanent fix by placing stents in the openings to both lungs. In his plan, Dr. Mahajan would place small stents in either lung; after six weeks, those stents would be replaced by larger stents; in another six weeks, the left side’s stent would be removed, and the right side’s stent would be replaced with a silicone stent that will remain within the airway for six months to a year. As with every procedure, there are some risks, and the risks associated with the stent placements have been significant.

Three days following the first stent placement, I was diagnosed with pneumonia, and since the initial placement, I’ve been infected with Aspergillus (mold) and pseudomonas (bacteria) and hospitalized three times. Although both types of mold and bacteria are readily available in the environment, through the soil, water, and plants, and typically do not cause infection in otherwise healthy people, they do cause complications in immune compromised patients. We were informed, prior to the stent placement, that the chance for infection was increased because secretions are difficult to clear when a stent is in place.

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I was given strict instructions for airway clearance, which I had/have been doing since my second transplant, including daily nebulizers to help open the airways, keep them opened, and thin secretions. Though continuing my nebulizing regimen on a twice-daily basis has caused no great burden, it hasn’t seemed to help in my fight against infection. As of right now, I am infected with Aspergillus and am taking inhaled Amphotericin to fight it. I suppose nebulizing Amphotericin is better than the alternative, which is IV antibiotics. At this point, I’m not sure my battered stomach can handle any more!

With all of that said, living life is pretty sweet, even though I often need to drag my oxygen tank along with me for the ride. In between hospital stays, transplant appointments, bronchoscopies, and various other doctors’ appointments, I do manage to find some time for those things I enjoy. I spent spring break in Florida with my sister, Jocelyn, and my niece and nephew, which was fabulously fun (minus the third degree burns I received on my feet (thank goodness that’s all that was exposed on the beach)), and I’ve spent the last few months busily planning our upcoming wedding! I can’t believe that I will be Mrs. Michael Huie in three weeks! What a lucky girl I am! And to all those kids who take oxygen for granted, I am eternally envious!

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:

 

Thank You!

Thank you everyone!  We’re home!!!

We started this journey about 10 months ago (August 28, 2014), flying into Houston, TX in an air ambulance, just the two of us, unsure of what to expect, unsure of what was to come.  We were just very thankful that Houston Methodist gave us a chance to be evaluated in their lung transplant program.

What was supposed to be a four day evaluation turned into a ten day evaluation.  Towards the end of the evaluation, we were still left with more questions than answers.  The infectious disease team wanted to treat Anya for an acute infection for a minimum of 6-18 months before even considering her for transplant.  I’ll never forget the day the infectious disease doctor asked us if we were planning to go home to treat the infection.  We looked at each other, dumbfounded, because we both knew that going home without new lungs was not an option.

A few days later, during a routine bronchoscopy for the evaluation, they punctured Anya’s lung.  Anya spent three weeks in the ICU, just trying to recover from that unfortunate incident.  They put her on a ventilator, sedated her for a few days, and we waited for everything to stabilize.  I’ll never forget that morning the doctor called me and asked me for permission to intubate and put her on a ventilator.

It was a tough three weeks, but ultimately, Anya was able to overcome that obstacle and move over to Kindred Hospital, a long term acute care facility.  Still unsure whether or not they would list her, Anya worked every day trying to maintain her strength.

For three long months, we watched as Anya walked around the halls of Kindred Hospital, with a ventilator and feeding tube in tow, struggling to breathe with each step.  If you thought running a marathon was hard, try doing one every day for three months.

On November 20, 2014, the transplant team finally decided to list her.  Exactly 40 days later, on December 30, 2014, Anya got “The Call”.  It was an incredible moment as her sister’s family flew into Houston just a few hours prior to spend New Year’s Eve with her.  We were all sitting there in her room at Kindred and received a call from the transplant center saying that they had lungs for her.  About eight hours later, she was in the operating room receiving her new lungs.

After spending 31 days in the ICU and five days in the step-down unit, Anya was released to go home to our apartment in Houston on February 5, 2015.  And last Wednesday, the transplant team finally gave us the okay to go home-home, back to Chantilly, VA.

We could not have made this journey without the support of each and everyone who reached out to us in one way or another.  Thank you to everyone who took time out of their day to send messages, care packages, donations, presents, food, cards, and prayers.  Some of the things I remember off the top of my head…the elementary school get-well cards with hand written notes from the students, the superwoman socks (which Anya proudly displayed on her first Kindred walk), the many puzzles, books (both for reading and activity), stay strong anya bracelets and t-shirts, all of the cards of encouragement, the big purple ribbon from my soccer teams, the mini pillow with the butterfly, the “Bats in the Belfry” sent as our Halloween decorations, the Christmas video sent from my family in northern Virginia, the Stay Strong Anya videos and pictures, all of the gift cards, the t-shirts, the blankets, the home cooked meals, the beautiful pieces of crystal, and of course, all of the generous donations.  Each and every gift put a smile on Anya’s face and they really helped us keep on pushing along, more than any of you will ever know.

Thank you to all of those who took the time to visit Anya in Houston: PJ & her husband, Chad, Christina, Bonnie, Johnny, Rosemary, Dale, Sue, Rick, Darlene, Quentin, Sharon, Sarah, Heather, & DJ.  You didn’t have to do it, but you all took the time to stop by.  The visits meant a lot.

Special thank you my parents and my sister who watched our crazy dogs for nearly two months, without hesitation, and drove non-stop nearly 1,400 miles to bring them and my car to us.  If there’s one thing that I can always count on, it’s my family…including all of my great cousins.  There’s not much more that I can ask for.

Special thank you to Colette Bukowski who took it upon herself to setup the Gofundme account, which raised over $20,000 to help with medical bills. She also started the Stay Strong Anya Facebook page and visited Anya three times in and out of the hospital. It’s refreshing to see someone do all of this out of the kindness of her own heart.  We’ll never be able to repay her for everything that she has done for us.  We’re so honored to call her our friend.

Special thank you to Becky, Lauren, Luke, and Stephen.  Anya and I were both sad leaving Houston, because we felt like we left our best friends behind.  When we first arrived in Houston, we were both very scared and very lost in the big city.  Becky and Lauren reached out to us immediately.  I just remember that they brought us food and hung out with us for 2-3 hours that first day, and we just talked.  It really helped us take our minds off of everything hospital related.  For those ten evaluation days, they took turns out of their busy work schedules and made sure that we were never alone.  They were there every single step of the way…Dunn 4, ICU, Kindred, ICU, post transplant.  When we got The Call, Becky drove an hour at midnight on a Tuesday to see Anya before they whisked her away into the operating room.  Sometimes unusual circumstances bring people into your lives…we’re so very lucky that they came into ours.  They are indeed very special people and now a part of our family.  We cannot thank them enough for all that they have done for us and will never be able to repay their love and kindness.

And I don’t think “Thank You” is appropriate for Anya’s family, as we were all in this together.  I’ll just say this… Anya’s dad, Larry, and Anya’s mom, Marion, took turns spending a month or two at a time staying with Anya in the ICU and Kindred and at the apartment, post transplant.  Anya’s step-dad, Roger, drove from Ohio to Houston and back, eight times.  Anya’s sister — Jocelyn, brother-in-law — Patrick, niece — Parker, and nephew — Harrison came at the most opportune time, when we got The Call.  I can’t imagine how hard it was to be without their daughter, sister, sister-in-law and aunt over a thousand miles away, but they all managed to be here in one way or another throughout this entire journey.  Not a single day passed where one of them wasn’t there or didn’t call/text her….not even to this day.  Talking about unconditional love, Anya’s family is the definition of it.

And lastly, I wanted to thank the good doctors and lung transplant team over at Houston Methodist for giving Anya a chance —  lead by Dr. Kaleekal and followed by Dr. Sinha, Dr. Mankidy, Dr. Yousef, Dr. Joythula, Dr. Grimes, Dr. Yui, and Dr. Shakespeare.  Thank you to the great team at Kindred Hospital lead by Dr. Nguyen, who stayed with us until every single one of our questions were answered, and we had a lot of questions.  Thank you to our great transplant coordinators, Marie and Lisa, who have always gone above and beyond to communicate with us.  A special thank you to some special folks at Methodist, including:  RN’s Laura and Sandra; RT’s Jeff, Dale, and Raymond, and all of the respiratory therapists in the ICU and Dunn 4; and PT Chris, the ICU physical therapist. And thank you to all of the nurses at Kindred, including Liz, Jeremy, Rose, and Tiffany (and many more).  A special thank you to some special RT’s at Kindred, including: Daniel, Yemi, Rosemary, and Latief and Roxanne (who spent many nights trying to calm Anya down during her panic attacks).  Thanks to Bob Stein, the CEO of Kindred Hospital in Houston, for being available to answer our questions and concerns.  Much love and thanks to Tiffany, the nurse practitioner at Kindred, who never had a doubt about getting Anya a new set of lungs and to Rick and Kim, the physical therapists at Kindred who always kept a positive attitude and pushed Anya just enough every single day to help her get to transplant.  Lastly, I’d like to thank my good buddy, Randy, from Kindred, whose wife had a transplant last September, for listening and sharing in my daily worries and struggles.  I hope Missy gets out soon.

Last, but not least, Anya’s donor.  Without organ donation, Anya would not be here, nor would the thousands of others who have received the gift of life.  As of today, there are 123,012 people in need of a life saving organ transplant.  There are not enough donors to meet the demand.  Signing up is simple.

See everyone soon.

Anya and Mike

 

You just won a trip to home, how do you feel Anya?

You just won a trip to home, how do you feel Anya?

Post Transplant – Day 155 – Did Someone Say “Home”?

The good news is that we’re getting out of here!  The bad news is that it’s not going to happen until the end of the month.

It’s been a long journey, but I think we’re both ready to go HOME.

Anya had her 6-month checkup yesterday.  They did a full battery of tests, including blood work, VQ scan, CT Scan, EKG, Echo, PFTs, and a bronchoscopy with biopsy and cultures on Monday.  Yeah, say that 10 times fast.

Things are going pretty good.  Anya’s lung function (PFTs) is currently at 64%.  It got as high as 72%, but she’s still having a little narrowing of her airways, which is why we have to stay here for another few weeks.  They want to do one more balloon dilation (no stent), of her airways before they release us to our transplant team back in Virginia.

At the end of our clinic yesterday, the head of the pulmonary team, Dr. Kaleekal, gave us green light to go home by the end of the month.  Woohoo!  He also told us that Anya was the last retransplant at Houston Methodist (transferred from another center) for at least “a year or so”, mainly because they are so understaffed right now.  I couldn’t help but think how timing played such a huge part in this.

So, how’s Anya feeling?  Well, we walked a 5k about a month ago:

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Half way point #gotr we lost Luke

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Celebrated her 40th birthday on April 27th!!!

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Sullivan's Steakhouse!

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Went bowling!!

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Anya hitting the 10-1 split

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Hit some golf balls at Top Golf – Katy:

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Top golf… Right down the pipe

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Went to a Dynamo game:

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Flew to southern Virginia for a few days:

 

Visited our old friends at Kindred Hospital:

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Truth is, Anya is really enjoying just being able to breathe again.  To our friends and family back at home, we’ll be back in a few weeks.  And to our family here in Houston (Luke, Becky, Stephen and Lauren), we’re not leaving yet!  And we’ll definitely be back in Houston in 6 months for our 1 year checkup.