“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!

Liver Appointment at Fairfax Hospital

Yesterday, Mike and I had our scheduled appointment with the Center for Liver Diseases at Inova Fairfax Hospital to discuss a repeat liver biopsy.  As I’m sure you recall from our last post, Duke’s Dr. Berg felt that a repeat was in order, because the information obtained from the first biopsy at Duke (elevated pressures) was not consistent with the liver function tests, ultrasound, and CT results.  From our understanding, yesterday’s appointment was to be a formality, as most doctors want to meet their patients before putting them through any procedure.

As we were discussing a possible biopsy with the physician’s assistant, we learned that Dr. Younossi – vice president of research and executive director of the center – was pondering the necessity of another biopsy.  The PA explained that Fairfax wanted to obtain the slides taken from the biopsy at Duke and have their “world-renowned” pathologist and researcher read the slides to determine if they were interpreted correctly.  If the slides were read in error, then a biopsy may not need to be performed.

Dr. Younossi then met with us to answer any questions we had and to discuss what the elevated pressures in the first biopsy could possibly mean.  He stated that the elevated pressures may be due to three possible causes:  Portal hypertension (an increase in the pressure within the portal vein (the vein that carries blood from the digestive organs to the liver)), which would indicate cirrhosis; Cystic fibrosis induced liver disease (presenting with elevated pressures with no cirrhosis); or An incorrect reading of the biopsy slides. 

Obviously, we are holding out hope that the slides were read incorrectly and that a repeat biopsy will not be necessary.  At this point, however, we’ve learned to expect the unexpected, regardless of what that may be.  Unfortunately, we won’t know anything further for another 2-3 weeks and the waiting begins again.

 

Keeping occupied

Today is the day before THE day, and I must admit that I’m feeling quite anxious.  Tomorrow we should find out whether or not I’ll be accepted as a patient at Duke.  It’s been possibly the longest three weeks of my life.  And although I’ve tried not to belabor the “what ifs” of Duke’s decision, I’m finding it more and more difficult to keep my mind occupied on something else.

After having the meeting with the liver department head on April 17, Mike and I spent a good deal of time discussing what could happen and what we should expect.  But after receiving an email from my transplant coordinator on April 23 stating that Duke didn’t want to make a decision that would “hasten my death,” we decided to table our discussions for a bit.  Although both of us are analytical to a fault, I am also a realist and know there are some things that are out of my control.  Perhaps that is what makes this waiting game so incredibly frustrating.

So, here’s looking forward to tomorrow and the answer we will receive.  Let’s hope that Duke determines that transplantation is a “survival benefit” for me and my family and accepts me into their program.  As my coordinator stated, “There is obviously no way to look into a crystal ball and know for sure what the outcome will be–and therein lies the need for careful consideration and collaboration between the teams before we just forge ahead.” 

Stay tuned….