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:

 

4 thoughts on “Happy 1-year Lungversary to Anya!

  1. wendy says:

    I’ve been reading your blog since before her second transplant and i’m so happy about all the amazing progress. I have CF as well and probably going to be listed soon. I know that there will always be bumps in the road but seeing your strength has really helped me a lot and i’m overcoming my fears of transplant. thank you so much for this blog and wishing you many happy new years with your new lungs!! 🙂 <3

    • Anya Anya says:

      Thanks, Wendy! It’s been quite a long journey, but I’m getting stronger day by day. In fact, today was my first gym experience in nearly four years, so I’m hoping that 2016 is my best year yet!!

      I’m so happy that reading about my journey has given you some solace. When Mike and I decided to start the blog, our intention was to inform my friends and family of what was going on with my health and to (hopefully) reach others who may be experiencing a similar circumstance. I think I speak for Mike as well when I say that knowing the blog helped you overcome some of your initial transplant fears makes writing it worthwhile.

      I wish you much luck on your road ahead, and please feel free to contact either of us if you have any questions about transplant and what to expect going forward.

      Anya

  2. Mike Mike says:

    Thanks for reading Wendy! Part of the reason we started this blog was to help others going through or about to go through the same journey as we went through. We wish you the best with your journey.

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