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 90

We’re still here.  In Houston.  Things are going well.  Anya’s back to her old self again; for the most part.  Her lung function is still hovering around 65%.  Not ideal post transplant, but it was at 42% just 6 weeks ago, so we’re definitely going in the right direction.  It may take up to a year before she reaches her optimal lung function.

The transplant team did have to put a bronchial stent in Anya’s airway this past Friday.  The right side was still narrowing and the one pulmonary doctor, who’s more aggressive, decided that it was necessary.  The plan is to leave it in for four weeks, then reassess.  He’s pretty confident that her lungs will fully heal within 4 to 8 weeks.  He said that it’s getting better every time they go in.  He also said that the left side of her lungs look pretty good.

Anya’s had probably 2 or 3 bronchs since the last update.  There’s been no viruses, no rejection, and no infection found in the lungs in any of those bronchs, which is great news.  We’re just waiting for these damn things to heal, which is a very slow process, especially considering all that she’s been through.

The skin cancers.  We have an appointment next Wednesday to freeze them off with liquid nitrogen.  Hopefully, it will be uneventful.  The plan going forward is to change her immunosuppressant drug, Cellcept (aka Myfortic), to Rapamune, which is better for people with skin cancer.  Also, lower her dose of Prograf, which is her main anti-rejection drug, so that her immune system has a lesser chance of creating new skin cancers.  It’s going to be a delicate balance, as it is always.

The top two things to worry about post-transplant are infection and rejection.  Then, comes cancer.  A lot of the transplant population are more susceptible to all kinds of cancers due to the anti-rejection drugs which lower the immune system.  Anyways, we’ll just have to monitor the skin cancers on a bi-monthly or quarterly basis from here on out.

Overall though, Anya looks and feels great.  Just the other day, we ran from the store to the our car because it was raining and she didn’t even get winded.  She looked at me and said, “I just ran to the car”…and smiled.  The little things that we all take for granted are the things that Anya’s been fighting for all her life.

So, it looks like we’ll be out of here by mid-June’ish.  We have our 4 month check-up this coming Monday, so our 5 month checkup should be in early May, and our big 6 month checkup should be in early June.  If all goes well from now until then, then we should be given the all clear to go home some time after that.  One thing that could hold us back is this bronchial stent in her lungs.  They’re not going to release us until this thing is out of her permanently.  The other thing is the Nissen Fundoplication, which is the acid reflux surgery.  I think the doctor is leaning against doing this, so this probably won’t be a factor.

That’s about it for now.  Here’s what we’ve been doing over the past several weeks:

Blue Bells?

Blue Bells?

Pre Bronchial Stent in the OR

Pre Bronchial Stent in the OR

Duke open practice before elite 8 game

Duke open practice before elite 8 game

Bishop's Palace in Galveston

Bishop’s Palace in Galveston

Galveston - BEACH!

Galveston – BEACH!

Galveston eating seafood at Shrimp 'N Stuff

Galveston eating seafood at Shrimp ‘N Stuff

Freebirds Burritos!

Freebirds Burritos!

Cancelled bronch

Cancelled bronch

Panera (we took a pic like this almost exactly a year ago on this day)

Panera (we took a pic like this almost exactly a year ago on this day)

Natural Science Museum

Natural Science Museum

Space Center Rocket

Space Center Rocket

Selfie on the Tram at the Space Center

Selfie on the Tram at the Space Center

Hermann Park

Hermann Park

Becky and Anya (didn't get a good pic of the rest of the crew)

Becky and Anya

Becky's house with many dogs + 1 horse

Becky’s house with many dogs + 1 horse

Nurse Laura

Nurse Laura

Nurse Laura's daughter who also has CF

Nurse Laura’s daughter who also has CF

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

Post Transplant – Day 61

Not a whole lot has happened over the past two weeks.  Anya had one bronchoscopy last Thursday.  The doctor took her Jackson 4 trach out.  Here’s what the metal trach looked like:

jackson-4-trach

Only the top two metal pieces (metal tube & inner cannula) were attached.  The bottom piece (obturator) was only used to put the trach back in, if it was ever taken out, like during a bronchoscopy.

Here’s what the trach looked like attached to Anya:

tracheostomy4

And here’s the inside to outside connection:

tracheostomy1

Anyways, this thing was removed last Thursday, which means a few things: 1) the doctor was comfortable enough with the way that Anya’s lungs looked that he didn’t feel as though the trach was necessary anymore, 2) there wasn’t enough mucus buildup in her lungs to require a trach for suctioning.  Definitely good news.

As far as the hole in her neck, it should close within a few days and fully heal within 2 weeks.  Believe it or not,  no stitches were required to close the hole.  It just kinda closes and heals on it’s own.  Right now, there’s just a little scab there.    The wound should be barely noticeable after it fully heals.

So, what’s in store for us from here on out?  First up is a dermatology appointment on March 5th.  Unfortunately, one of the side effects of one of these immunosuppressive drugs (Cellcept) is skin cancer.  The type of skin cancer is called squamous cell carcinoma.  Anya had a few spots on her scalp, neck and arms removed with MOHS surgery and liquid nitrogen after her first transplant.  Usually, the spots are isolated and do not metastasize if removed early, so the plan is to stay on top of them from here on out.  This type of skin cancer is fairly common with immunosuppressed people.  Currently, Anya has a few spots on top of her head which are most likely squamous cell carcinoma or pre-cancer.  Hopefully, they can just remove them without the MOHS surgery.

The head of the pulmonary team here thinks that one of the reasons Anya went into chronic rejection after her first transplant is because our transplant team over at Inova Fairfax took her off of Cellcept to combat the skin cancer.  This time around, the transplant team here is going to keep her on this important immunosuppressive drug and just monitor the skin cancer.

Next up, after this dermatology appointment, is our 3-month checkup.  Apparently, the transplant clinic is going to be closed for a few weeks in April, so our 3-month check up is going to be a little bit early.  We’re scheduled for the usual — blood work, CT Scan/x-ray, spirometry, 6-minute walk, then an appointment with the pulmonologist.  Hopefully, all of this will be uneventful.

That’s about it for the next few weeks.  Anya’s continuing to progress.  Here are some pictures from the past two weeks:

Trach is out!

Trach is out!

Becky, Anya, Lauren - So #Blessed to have them in our lives

Becky, Anya, Lauren – So very #blessed to have them in our lives

Sarah, Anya, Heather - Besties visiting from Ohio

Sarah, Anya, Heather – Besties visiting from Ohio

The Three Amigos at the dog park

The Three Amigos at the dog park