“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.

IMG_7198

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.

Screen Shot 2016-07-02 at 9.28.08 PM

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!