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?

 

 

 

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?

Dermatology Appointment & 3 Month Clinic Visit

We had our dermatology appointment last Thursday and our 3-month checkup with the transplant team this past Monday. Both appointments went well.

Dermatology appointment

Dermatology appointment

At the dermatologist, Anya had two spots on her scalp biopsied, both the size of a dime. The reports came back on Monday night and the dermatologist determined that both spots were “pre-cancer”, which means no need for surgery. We scheduled an appointment for next month to go back and “burn” them off with liquid nitrogen. Phew! We were very worried about one of the spots pre-transplant, mainly because we thought that they wouldn’t list us knowing that Anya might have a new skin cancer spot.

We told the doctor about the new cancer spots at our clinic visit on Monday and they’re going to monitor it and maybe switch one of the immunosuppressant drugs to a different one (Cellcept to Rapamune). No one really seems to know what to do in these situations including the doctors. What I do know is this, Anya developed chronic rejection in 2012 about a year and a half after the transplant team over at Inova Fairfax changed one of her immunosuppressant drugs. I’m still trying to figure out which ones. This time around, I think we’re going to go with the old saying, “if it ain’t broke, then don’t fix it”. Once chronic rejection starts, it’s hard to stop, but with the skin cancers, as long as we stay on top of them, then from what I’ve read, they can be controlled.

 

7am Monday

7am Monday

Lung function from home spirometer

Lung function from home spirometer

Our 3-month checkup went pretty well too. Anya’s lung function went up to 58%; 16% higher than what it was 3 weeks ago. This is the highest that it’s been in probably 3 years.  For her 6 minute walk, the lowest her oxygen saturations dropped to was 93%, so officially there is no more need for oxygen. She hasn’t been using oxygen during the day for a few weeks now anyways.

Also, the doctor finally gave us a “go home date” of mid to late June. Yay!  He was very impressed with how well Anya was doing. He discontinued a few drugs and ordered the IV central line to be taken out next week.

A = Awesome, not Anya -- Salads are not helping

A = Awesome, not Anya — Love of salads may be partially to blame

After this IV line is taken out, there’ll only be one more line left to take out, which is the feeding tube.  The doctor wants Anya to go up to 115 pounds before they take it out, but Anya negotiated it down to 105 pounds. She weighs 89 pounds right now, so we have a little ways to go.

So, both appointments went well.  The doctor ordered a bronchoscopy for Friday just to see how things are progressing inside of her lungs.  There’s still a little bit of concern with the left side of her airway narrowing.  He mentioned the stent again, but more of a “at some point in the future” instead of a “need to put the stent in now” type of way.  He seems to think that Anya’s lung function could improve even more with the help of a stent.  We’ll see what they think after Friday’s bronch.

What else…biopsies of the lungs have all been negative for acute rejection since transplant.  Culture reports have all been negative since February.  Bloodwork looks great.  All good great news.

I guess it’s time to enjoy Houston.  We’ve been waiting for this moment ever since we arrived here.  Suggestions?

Chillin at Ikea

Chillin at Ikea

Houston Rodeo w/goats & N99 mask

Houston Rodeo w/goats & N99 mask