Why We Halted Our Adoption: The Uncertainty – Part 18

Let’s just dig right in, shall we? 🙂

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.
*For more on the possible reasons why I was suddenly not in the best of health, please see Part 16.
*For more on my two days of testing to try to figure out the problem, please see Part 17.
__________

After my bronchoscopy, the testing was finally over.
All we could at that point was wait for all the results from the past 2 days.

We returned home, went back to work, and prayed for the best outcome.

If you’ve ever had a battery of tests done within a few days, you know that the results all don’t come back at once. That would make life too easy, wouldn’t it? 😉  No, after even a few weeks, we still weren’t exactly sure what was going on.

I say “exactly,” because we did have some news at that point.
“What,” you ask?

Well…

The Good News:
There was NO sign of acute rejection, infection, or antibody activity in my lungs!

The Bad News:
There was NO sign of acute rejection, infection or antibody activity in my lungs!

We were expecting my lungs to “talk” to us, remember? Instead, they just remained inconveniently silent.
Thanks for the help – NOT!

Allow me to explain. 

Since there were no antibodies in my lungs, as great as that was, it also made things extremely complicated.  It made things so complicated that my doctor and I spent 45 minutes on the phone one day after work discussing the complexities of it all. If you know anything about the medical community, that’s not normal. In fact, it’s sadly extremely rare. The fact that he was willing go out of his way for me, though, is just a tangible example of why I love having him in charge of my care! 🙂

During that honest conversation with my physician, I learned that answers weren’t going to come as easily as we thought.

Since I didn’t have any antibodies in my lungs, yet my numbers were rising and my pulmonary function was decreasing, I met only 1 of the 2 required criteria for one to be treated for rejection.When you don’t meet both, then whether or not you treat is a choice. Some treat, some don’t. You could talk to two different transplant recipients about the exact same case and get two entirely different proposed solutions. Helpful, huh?

At that point, my doctor also still hadn’t been given all the results from the acid reflux study. Preliminary results showed I didn’t have GERD (common acid reflux), but I did have 51 episodes of what they call “non-acid reflux,” i.e. silent reflux. Before we did anything rash, my doctor wanted to consult with the GI doctor (who was conveniently out-of-town) about those 51 episodes. How high did the reflux go? How long did the episodes last? Is it “bad” to have 51 episodes? Would she recommend surgery? All I knew is that I wasn’t recommending surgery when, at least so far, I was just told there was a “possibility” that this issue was affecting my lung function. Any “silent” acid reflux issues I was having certainly wasn’t my focus. My laser-light focus was on the antibodies.

Thankfully, much of the conversation with my doctor was about just that – the antibodies.

That part of the conversation wasn’t what you’d expect between a physician and his patient. Why? Because my doctor said “I don’t know,” and he said it a lot. You know how I responded?

As one who values honesty, I can’t explain to you how much I appreciated the honesty and humility my doctor displayed that day. No, I didn’t like that the information he was giving me was confusing and full of uncertainty, but then again, neither did he. I could tell it was difficult for him to not have the answers. As a physician, he is trained to pint-point problems and treat them effectively, no matter how hard the diagnosis. Let’s be honest. We pay doctors to give us answers and expect nothing less. On that day, though, my doctor couldn’t give me answers. He gave me, though, what he could – his sincere commitment to figure it out. Moreover, he gave me what many physicians will never give their patients – their heart. I knew that day that the man on the other line wasn’t just my doctor; he was my friend. I knew Dr. Kirkby cared deeply for me, for John, for our future as parents, and desperately wanted to see me well again for my sake, not for his. Most of all, I knew there was no other man I’d ever want in charge of my care.

Since the medical community was divided on what to do with the data we had, I certainly wasn’t going to make the road ahead easy for him. With me feeling good, having less of a % of antibodies (though they seemed to be ticking upward fast) than you usually treat (even if they aren’t present in the lungs), and having “incredibly higher” lung function than any of the 4 other patients to whom they’ve given the treatment, but also have decreased lung function for me, I was an anomaly.

If we went forward and decided to treat, over the course of a month, I’d be enduring four, day-long IV sessions of a drug much like chemotherapy. Thankfully, I’d get to keep my hair. I would, however, be tired and have an even more weakened immune system than normal. I could work if I felt up to it (except on the days I got the IV), but we wouldn’t know how I’d do until we started the drug. If that wasn’t bad enough, our close friends are getting married in just a few months. I wasn’t just going to be attending the wedding in August. I was going to be a bridesmaid. We also wanted to move forward with our adoption soon.

It would be an understatement to say that now was definitely not a good time to need chemo-like drugs, not that any time ever is! 

As I said, we knew once Dr. Kirkby knew all the info from the probe study for the acid reflux, it would help us all feel better about that not being an issue, or at least not one we would have to tackle in the immediate future. There were no signs of aspiration of acid in the lungs at that point, which was definitely a good sign. Once we had the GI doctor’s full report, hopefully I wouldn’t have to hear the word “Nissen” again for a very, very long time.

If I wasn’t already happy enough with my doctor, he agreed to contact my former physician, Dr. Astor, who is now the head of UMass’ transplant program and the one under whom Dr. Kirkby studied, to get a second opinion. Over the course of his long, prestigious career, Dr. Astor has literally dealt with hundreds of lung transplant patients, many more than Dr. Kirkby has been afforded the opportunity to see. As common sense would tell you, more patients automatically means more knowledge. Even if Dr. Astor hadn’t seen a patient in exactly the same circumstances as mine, we were sure he could provide us valuable insight.

Did I mention how much I appreciate my doctor? 😀

All we could do in the time being, like we had done for so many weeks already, was wait and see.

Part 19 to come!

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

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