Why We Halted Our Adoption: The Possibilities – Part 16

So in Part 15, life just got more complicated.
I won’t lie. In the midst of it, I found myself many, many times mumbling, “Is it over yet?”

You ready for more?

Let us review: Why did we halt our adoption?

The simplest answer is because we cannot afford to pursue adoption and surrogacy at once.
*For more on why we before 3 weeks ago we never dreamed surrogacy would be an option,  and how we were both finally at peace with moving forward with our adoption plans, please see Part 1.
*For more on the Facebook message I received 3 weeks ago from practically a perfect stranger that would rock anyone’s world, please see Part 2.
*For more on our surprisingly spirited 1st reaction to that message, please see Part 3.
*For more on the questions we both had, and the emotional struggle I went through, once the surrogacy option was presented to us, please see Part 4.
*For more on the initial, God-filled meeting I had with the woman who strongly felt God may very well be calling her to be our surrogate, please see Part 5.
*For more on the extremely disheartening news we received the day after I met with the woman who appeared to be an angel sent by God to carry our biological child, please see Part 6.
*For more on the strange, but strong, intuition I was feeling just a little over a week after our dream of surrogacy seemed to be slipping from our hands, please see Part 7.
*For more on all the signs that just weren’t going away and ultimately pointing to my intuition being most likely true, please see Part 8.
*For more on the dramatic turn of events that took place one early morning, please see Part 9.
*For more on the painful drive, and then wait at the hospital, I endured while waiting to hear if my intuition was true, please see Part 10.
*For more on the internal conflict I felt when I found out my intuition was wrong, please see Part 11.
*For more on the decision I made to go seek a second doctor’s opinion on what had (or hadn’t) happened, please see Part 12.
*For more on how we found out we had actually miscarried our baby, please see Part 13.
*For more of how the miscarriage affected me emotionally,  and why I chose to share my grief, please see Part 1, Part 2 and Part 3 of my “Redeeming Miscarriage” series.

*For more on the messiness of life, in particular my life, please see Part 14.
*For more on what I never told you had happened after the miscarriage, please see Part 15.

“Your antibody count was up to 17% on Monday.” 
“My what?”

If you’ll recall from Part 15, my transplant nurse and friend, Ashley, explained to me the ends-and-outs of the transplant science surrounding antibodies, a science which is not clearly understood and fairly new. I wish there was an easy way for me to explain it all to you, but just remember that antibodies aren’t something you want, and they can lead to antibody-mediated rejection. If you want, you can read this article about different types of rejection, which talks a bit about this type of rejection. Be forewarned, it’s heady! I’ll abbreviate it for you by saying this:

In transplant-speak, “antibody-mediated rejection” is a fancy name for “bad news.”

So far the only research-proven ways one can definitely contract antibodies after transplant (i.e. not from your donor) are through blood transfusions and pregnancy.They may not be the only ways (like my virus, which is the only thing that makes sense at that time), but they are certainly the reasons supported by the most evidence.  

I hadn’t had any blood transfusions. I had, though, been pregnant and was now losing our baby. While standing there learning about yet another life complication, I was exhausted, a bit short of breath and definitely not feeling myself – not good. We had to wait 6 weeks or so, though, to re-test, due to my body needing to regain some stability after my unexpected miscarriage. 

So, that was that. The waiting game was about to begin, a waiting game that would last much longer than expected.

I hung up the phone and aimlessly roamed the aisles in Meijer.
I was overcome with confusion and not in the mood to drive.
I physically trembled as I tried to take it all in.
Now what? What is happening to me, to my life? Seriously, Lord? 

I prayed (OK, begged) God for protection and peace, mustered up enough energy to drive myself home. Once again, I picked up my phone. This time I called my husband, John. I did my best in my diatribe to him to play it off like nothing was wrong and I wasn’t worried, so he shouldn’t worry, either. Only a small part of me believed the positivity coming out of my mouth. I wasn’t my usual “glass half full” kind of self at that point. The extreme hormonal shift occurring inside of me because of the miscarriage, as well as the grief that came with our loss, had me feeling extremely emotionally unstable and prone to crying. I didn’t want to cry about this to John, though. I had already been uncharacteristically inconsolable several times the previous few days; he’d been through enough of my emotional instability.

There was nothing we could do at that point but pray and wait.
For 6 weeks.

During that time, I thankfully began feeling much more like myself, emotionally and physically speaking. It didn’t happen overnight, but the symptoms I had been physically feeling (including the shortness of breath, which was the most concerning) the day I first learned the word “antibody,” all subsided and were a somewhat distant memory.

Our baby was far from a distant memory, but the horrible physical aftermath from the miscarriage was thankfully over….oh, wait. I forgot. It wasn’t, far from it.

After weeks of waiting, the day (a Monday) finally came that I could go get my “all clear” from the transplant team. It was my hope that in a matter of just a few hours, I would no longer  have to worry about there being any medical reason why we couldn’t proceed with starting our family in a way that didn’t involve me attempting to conceive (not that we were “trying” before) any more children; doing so would only put my health, and the baby, in jeopardy. I certainly wasn’t emotionally ready at that point to go back to thinking about welcoming another child into our home. I wanted the delay in moving forward with our plans, though, to be our decision, not that of my medical team. I wanted to be able to re-start the adoption process, or go back to surrogacy if that was the way we felt led, at any point. I didn’t want someone else giving me a timeline of when I could, or couldn’t, pursue a family – the family I so desperately wanted.

The truth is, after feeling the deepest emotional pain I had ever had in my entire life (including the time I almost died), I honestly just wanted to feel in control of my seemingly ever-changing, never-predictable, always-hard life.When my pulmonary function test came back that day even lower than the time before, though, God reminded me that He was still in charge – not me.

92%?! That just couldn’t be…but it was.
A perfectionist and self-competitor when it comes to these things, I literally took the test 15 times – on two different machines. Though I gave it a valiant effort, try as I might, I simply couldn’t get the # to rise.

Though that number is considered extremely high for post-double lung transplant recipients, it was very, very low for me. After looking at a graph of all my pulmonary function tests since my transplant in September 2005, my worst fear was realized:

My lung function (FEV1 — max. amount of air blown out in 1 second) hadn’t been that low in over 6 years. In fact, it had only been that low 2 times since the day 7 1/2 years ago I traded in my 14% lung capacity lungs for some “new” ones.

Besides my test 29 days post-transplant (88%), that low of number had only happened once since late 2005 and not after a test which already showed declining lung function (like my last one). I couldn’t even recall what was going on during that time when I saw the date on the screen. Who knows. It could have even been a fluke. It didn’t matter, though. The numbers had gone all the way back up the next time and the dozens of times since then; many times I had even been over 100%.  Now, though, it was down and in a considerable fashion. I though the 95% I blew out 6 weeks prior was bad. I wasn’t prepared for my “new” number. I didn’t care if it was better than most lung transplant recipients best results. I wanted my numbers, the ones to which I was accustomed. My team wanted them, too.

Something was definitely up, and it wasn’t looking good.

My doctor (love him) and I sat there and had a long chat. Any change in lung function (especially two tests in-a-row with decreases) is always a point of concern. Coming off a miscarriage, I was a very special case. I was the first post-lung transplant patient who had become pregnant with whom my small center had dealt. Their lack of experience with those of my kind wasn’t uncommon. Even the biggest, most notorious centers don’t see hardly any people in my situation; pregnancy after transplant isn’t really recommended, after all.

I wasn’t just going through the normal, hard recovery from miscarriage. I was also having a decrease in lung function, and possibly a rise in antibodies; neither were good. If that wasn’t enough (it felt like more than enough, let me tell you), there was also another possible explanation for my decreased lung function.  Once again, the dreaded words “Laryngopharyngeal Reflux,” i.e. “silent” reflux, and “Nissen Fundoplication” were said.

Nothing sparks uneasiness into the heart of a transplant patient’s heart (at least this one’s) like those four strange words. It is an understatement to say they were the last words I ever wanted to hear at that point.

I think upon hearing them, I even said out loud Shoot me now.”
I just couldn’t help myself.

I didn’t want to be a part of the majority of transplant patients who had been diagnosed with “silent” reflux post-transplant and had to go on to have the horrible (in my mind) Nissen procedure. I didn’t care if there was the possibility that I was unknowingly (hence “silent” reflux) aspirating stomach acid into my lungs, causing corrosion and consequently my lowered lung function. I had absolutely no desire to deal with the effects of the surgery, in particular the fact that if I endured the procedure, I’d never, ever be able to throw up again! 😦

After some discussion, my doctor and I came to a consensus – we had to do something and had to do it now. We didn’t even have my antibody count back yet, since my blood had to be shipped to OSU for them to process the complicated test, but that didn’t matter. Before things went more South, something had to be done. We couldn’t sit back and just watch everything play out. My health could be in serious jeopardy if we did.

A bronchoscopy to get biopsies of my lungs was ordered for later that week, as well as a 24 hour impedance study (think tube in your nose and holster on your side for 24 hrs.) to check for the “silent” reflux issue.  John and I both were to suddenly take off work to go down for 2 days of testing. Things were getting serious – and fast.

The possibilities of what was wrong were before us, but were the answers close behind?

Part 17 to come!

Leave a comment

Filed under Baby, cystic fibrosis, Health, Life, Marriage, Miscarriage, Transplant

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s