Category Archives: Health

8 Years: Reflections on Life Post-Transplant

“Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.”
Ephesians 3:20-21

“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26

8 years.
2,922 days.
70,128 hours.
4,207,680 minutes.
252,460,800 seconds.

It’s been 8 years since I was wheeled through those double doors and taken back for my double lung transplant. It’s been 8 years since I said goodbye to a room full of family and friends, never knowing if I’d see them again this side of Heaven. It’s been 8 years since the Lord saw it fit to rescue me from my physical brokenness and save me from the brink of death in a matter of just 12 hours for my good, but most importantly, His glory. It’s been 8 years, but those years have been so very full, it feels more like a lifetime…and then some.

So much – so much more than I ever could anticipate – has happened since that time. It would take several blog posts to go through it all, but thankfully I’ve already written about much of it in my book, Breathtaking, as well as documented the most recent happenings here on the blog. If you only recently started following my story during the series on our adoption/surrogacy/miscarriage/adoption journey (thanks for reading, btw :)), I’d encourage you to get to know my life prior to 2013 through my husband’s and my book, if you get the chance.  It truly is a miraculous story of God’s sovereignty and goodness amidst human suffering, a story I could never, ever conjure up on my own in a million years. When I occasionally stop and read portions of the book, or even blog posts I have written this year, to remind myself of how faithful the Lord has been to me during my 27 years of life, I sometimes have a hard time believing that the person I’m reading is about me.

The ways in which I have seen God move in my life are staggeringly beautiful and constantly leave me face-down in a posture of humility before my King, as they should. On days like today, when the vivid memories come flooding back, and the tears fall like fresh rain, I am once again left speechless and so in awe of the work He has chosen to accomplish through me instead of choosing to take me Home years ago, which He so easily could have done. Words can never express my gratitude for the 8 years I have had to walk this earth. No matter how many more years I get, I have been blessed beyond measure to have had the fullness of life I have experienced since September 25, 2005. He didn’t have to practically raise me from the dead for Him to be sovereign or good. By His sheer nature, He can be nothing but those things and more. Friends, He didn’t “owe” me 8 more years, and He certainly doesn’t owe me any more.

He may not owe me any more, but I’m still a human. I still desperately want more time with the ones I love, especially my husband and my children, with whom I have yet to get to spend any time. If we’re truly honest with God, ourselves and others, we all want “more” of something. Whether that be something as simple as more understanding of why a life circumstance had to occur, more children, more money, more friends, more prestige, more whatever. At the end of the day, though, Jesus is asking us – is asking me – if we (I) ultimately only want more of Him, no matter if we get our desire for “more” ____.

That’s a hard pill to swallow (and believe me I’ve swallowed thousands of pills in my life), though, when more of Him may never mean more of the thing you so desperately want. You want the good news, though?

He promises He’ll always be enough.
Always. No exceptions – ever.

I wish I could say I live like I believe this 100% of the time. Like all humans, my finite mind has a hard time sometimes grasping why certain things have to happen. To be honest, 2005 was a lot easier for me than 2013 has been thus far. I know that will sound dramatic to some. It is what it is, though. I can’t really articulate for you all the ends-and-outs of exactly why that is. That is my reality, though, whether you (or I) understand it or not.

As I continue through my post-transplant journey, I admittedly struggle at times feeling like a ticking “time bomb.” In some ways, this feeling has gotten better as time as gone by; in others, it has become harder to escape. 8 years out, 1 year always feels like 5 years, if not more. In the beginning, 1 year would feel like a decade.

After all of these years, I think I’m finally starting to realize why:

The longer I live, the more people die who began their transplant journey around the same time as me (60-70%); that’s a fact of life I can’t change. I don’t have to be a slave to it, but I can’t hide under a rug and act like it doesn’t exist. Consequently, though I know beyond a shadow of a doubt God can choose to have me live another 50 years, time certainly doesn’t seem on my side. Just like an older person who most likely has lived at least 1/2 , if not much more of their life, I am left with not only a keen awareness of time but this insatiable desire to not only be a good steward of my time but also for more – lots more – of it in general. To not be enslaved to the awareness of life being but a vapor (James 4:14), I also have to daily (especially during this season of barrenness) give my desire for control over my time on earth over to the Lord, the One who numbered my days before time existed.

Don’t get me wrong. I’m a firm believer that being cognizant of time isn’t all a bad thing – hardly so. In fact, I believe (for me) having a healthy awareness of post-transplant patients’ life spans, and thinking through how your family is going to be taken care of if/when you’re gone and unable to be there for them, is not only the responsible thing to do but the Godly thing. That’s why I took the time to plan out my funeral 8 years ago when I was faced with the very real possibility of death. I refused to leave that difficult task on my parents to do with the help of my close friends, who also would have been grieving (though not as deeply) upon my death. My mom didn’t understand my reasoning for such planning at the time. Understandably so, she refused to take part in it. It had to be done, though; at least it had to be done for me, if even only for a few months, to live with a clear conscience. Even though  God had other plans for my life, and those written-out funeral plans were obviously never used, I know to this day I was obedient in doing it, even 8 1/2 years after sitting down with a group of people and planning out something that never came to fruition.

Now, 8 years, a loving marriage and Lord-willing soon-to-be, precious children later, my focus has shifted from my parents and close friends to my husband and children. My love for my parents hasn’t waned in the slightest (in fact, it has grown as I prepare to be a parent myself), but my priorities have changed and rightfully so. I still want more time with my parents, other immediate family and friends, of course. After all I had been through, I had no idea how much marriage, and the oneness (spiritually, emotionally and physically) that comes with it, would change the way I process time. After my surgery, I was made aware of how precious time truly is, but my urgency for spending my time well has only been heightened since marriage. I’m sure it will become even more sensitive once our children are here. Now I just don’t think about how I’m spending my God-given time and what type of legacy I am leaving. I also have a  physical longing to be a good steward of my time with my spouse and kids. I daily long to “redeem the time” we have with one another. I’m consciously aware that my days with them are (most likely) fewer than we all would like and for which we would ask, and that knowledge changes the way I view everything.

To illustrate my point, I’ll give you an analogy:

Sometimes I feel as if I am standing within an hourglass made of impenetrable glass, which is quickly burying me with sand, i.e. lost time.

As I look out at 99% of the world, in particular those my age, I see those whose glasses seem to be pouring much more slowly than mine. They are standing only knee-to-waist deep in their sand and hardly aware of the urgent feeling they, too, will one day feel to “redeem the time.” For most of them, that realization of their finiteness will come many years later in their journey called life. Due to feeling as if they, even those older than me, “have all the time in the world,” I see mostly a generally worry-free attitude when it comes to redeeming their time left on Earth.

As for me, no matter what the speed of others’ glasses, or how hard I try to move at their speed, I can’t crack the glass or slow down my sand. As a result, I continue to be (or feel as if I a being) swallowed up at a much faster rate than the vast majority of my peers. Those who are my age, including my own spouse, are naturally more concerned with their grandparents’ and parents’ hourglass at this point in their lives than their own.

As Christians, weasily say that none of us are guaranteed tomorrow. Most of us are planning on easily living at least 70-80 years, though, because that’s what statistics tell us we’ll most likely get.  In the process of living all of those years,  it’s easy to lose sight of the beauty and importance of redeeming ever single day, even the mundane ones. It’s easy to “bank” on things happening in life for you (whether graduating from college, marriage, having children, succeeding in your career, retirement, etc.), because after all, that is the natural trajectory of the vast majority’s lives. Furthermore, as people are moving through life and its natural ebbs and flows, most don’t consciously take their finite nature to heart, at least not every single day. This is especially true of those living within the first half of their natural lifespan.

People don’t consciously think about their own hourglass until tragedy strikes.

A few times in life, one will inevitably be rocked to the core and left to deal with a loved one’s mortality. This uneasiness is most likely first felt through the death of grandparents, in particular a close grandparent. Usually, after the initial blow (through the death/sickness of whomever is closest to them — usually the oldest loved ones still living at the time), life eventually returns to “normal.”

When tragedy strikes the younger (peers, spouses, children), however, it tends to “wake people up” a little more than when the elderly pass. Depending on how close and young the dead loved one was, the sting of death seems a little deeper, because all of us (no matter our religious affiliation) know the young aren’t “supposed” to pass away. We feel the effects of the Fall a little more during those tragic times.

Still, the formative life-changes that come from these times of grief, even in its most tense form, usually do not fully garner our attention to our own life clock. Even after the gravest of situations, the urgency to “redeem the time” wanes until the next tragedy, which starts the process all over again for a few days, months, or possibly a few years. 

Most of our lives are not lived under the part of the mantra that says “for tomorrow we die” but instead the former part, which says “live, drink and be merry.” And so we do. Like the old Tracy Lawrence song says, “time marches on,” and it does so without much thought from us most of the time.

Eventually, though, everyone starts to acknowledge their “sand.” After usually a very long, full life, people “suddenly” become aware of their hourglass filling up. They seem shocked and act as if it happened just overnight. As we all know, though, aging,  and consequent loss of time, is a natural progression; it is one that occurs whether we pay attention or not. Some life events, such as illness or a major birthday milestone, just make us more aware of that fact. Major life changes, such as graduating high school or college, getting married, having children, a mid-life crisis, or retirement can also remind us, at least for a bit, that life is indeed moving along.

Eventually, not only do people have to come to grips with time passing, they are faced with their pending death – the end of their “sand” falling – whether they’re ready or not. Psychology experts will tell you that it is during the last years of one’s own life, that deep reflection on one’s own life occurs for the first time for the majority of the human race. Some are eased into this pattern of thinking very slowly and reflect on-and-off for two or more decades before their demise. Others, however, are shoved forward into dealing with their mortality in a more tangible way when they are suddenly diagnosed with a severe illness (such a cancer or heart disease), diagnoses which can even come with a possibility of death for some. For many individuals, due to lack of self-actualization throughout most of their lifetime, oftentimes this period of end-of-life reflection brings up past regrets and disappointments in their personal, professional lives and even spiritual lives. It can conjure up feelings of  past hurt and shame and cause one to feel the consequences of the weight associated with a lack of fulfilled dreams, forgiveness for oneself and/or others, or a pattern of disobedience to God. Sadly, for some (even Christians who are confident in their eternal home), the darkest period of their life is the very end of their life – a very, very sad fact, if you ask me.

Whether we’re ready or not, whether we are at peace or not, the fact is this: We all die.

The question is this: Are we going to not only die well, but more importantly, live well? Are we going to live with conviction for the glory of King, the Author and Finisher of our faith, or are we to try be the masters of our own fate until that no longer works for us?

 Fast pouring glass or not, whether we choose to acknowledge our glass throughout life or not, in order to have peace, Jesus still has to be enough – in all things.

He has to be enough in life and in death. He is the Keeper of the glass, after all. He is the One who determines the number of our days, not us or a statistician who promises us far more, or maybe far fewer, days than we will actually live.

For me, that means a desire for more of Him has to be more than my desire for more time. On a tangible level, that means daily balancing the tension I feel to not focus so intently on my hourglass I feel paralyzed, but to be responsibly aware of its contents, nonetheless. That daily tension causes me to be cognizant of our finite nature, and therefore wanting to live my life to the fullest, but also wanting to be capable of relaxing and enjoying life while I have it, too. Some days, I walk the mental tight rope better than others.

Bottom line: I have to balance my keen awareness of the time at hand (which is a unique gift I’m thankful to have) with also a permission for myself to join the others and, at least in a way, “live, drink and be merry,” as long as I’m doing it for the glory of my King. After all, I’m not dead yet. 😉

Thank God, I’m not dead yet. 🙂


Advertisements

Leave a comment

Filed under Breathtaking, cystic fibrosis, grace, Health, Life, Marriage, Purpose, Sanctification, Simplicity, Transplant

Why We Are Not Pursuing Surrogacy

Sorry it’s been a while.
I’ve been too busy living my life to have time to blog about it.
I’m back, though. 🙂

In case you missed it, we finally are done with the “Why We Halted Our Adoption” series. I’m just as relieved about that fact as you, believe me.

Why is that?
Well, because that means that after about 6 months
, which included planning on going forward with adoption, being suddenly approached about surrogacy, suffering a miscarriage, and waiting out possible health complications from the unplanned pregnancy, our plans to start a family are back on! 😀

Not only are our plans for a family back on, they are in full swing, but we’ll get to all of that soon. We must deal with first things first, though. Before we can discuss how we plan on going forward with our journey to parenthood, we have to talk about what we are not planning on doing – at least not right now.

Long story short: Surrogacy is not currently an option for us.

It was far from easy coming to this conclusion, and it certainly wasn’t a decision that was solidified over night or without plenty of tears. We, especially I, really struggled with the whole thing, to be honest. I spent many nights praying, begging the Lord to just make it crystal clear to us what we were supposed to do with the selfless offer we were given literally out of the blue, an offer that to this day hasn’t been taken off the table by the other party.

I’m not going to lie. As much as we were floored (and humbled) by the opportunity to even be offered the ability to have a child through surrogacy, and as absolutely thrilled as we were with the prospect of safely having a biological child, our (especially John’s) strong, gut-reaction was to say “No” to surrogacy after finding out the costs surrounding it were going to be a lot higher (due to lacking fertility coverage like we thought) than we had anticipated or could afford without taking out a loan.  A lot higher – like $30,000+ higher (i.e. double what we thought) AT LEAST, that is if things went smoothly on the first try.

Hold the phone, people. I’m not married to Jimmy Fallon. $30,000 in the Payne (and I’m sure your) household is a huge chunk of change, and that was a conservative number. It could go a lot higher. To my husband, the more frugal one of the two of us, the new cost of pursuing parenthood through surrogacy might as well have been a $1,000,000. Not good, not good.

Though the new price caused us serious pause, we (especially John) struggled through our fear of not being good stewards of our God-given finances, should we go forward with surrogacy and have to take out a loan. We’d saved the past 3 1/2 years, but we hadn’t saved $50-80,000, hardly so. We hadn’t completely closed the door at that point, though.

We’re Christians and believe in the concept of God being Jehovah Jireh (the LORD as Provider), after all. We knew if He wanted us to pursue surrogacy, He’d provide the finances; we were absolutely sure of that. As I’ve always said, God doesn’t call the equipped but instead equips the called. We just weren’t sure if He was pulling us toward surrogacy or not.

Though due to the nature of how surrogacy became an option, many would (and did) argue that God had obviously made His will known and wanted us to go forward with pursuing it for His glory, it just wasn’t a black and white issue to us, especially to me. It was a really ugly, opaque shade of grey. If you know us, we are very much people who view life through very clear hues of black and white, so admitting we were struggling with making up our minds was hard for us. Though to our amazement (and yours) the idea of surrogacy had literally fallen into our laps, before we even found out about the new price tag associated with it, we really wrestled with the idea of spending out all this money (loan or not) to have our own biological children when so many children are waiting for their forever homes. Once we found out how much having a child through surrogacy was going to actually cost, that internal struggle just became that much harder.

We struggled with passages in Scripture that called us to take care of the orphans, and others which commanded us as Christ-followers to “die to self.” On the other hand, we also struggled with how it obviously wasn’t a sin for others (including our own parents) to have children of their own; they didn’t adopt nor deny their God-given desire to have biological children. Did that mean that just because the method by which one obtains a biological child may be different, and the financial cost may be astronomically higher, the outcome of having a blood-relative child through surrogacy really isn’t a sin (just thinking out loud here)?

Opinions on what we should do very much favored us pursuing surrogacy, no matter the cost. Clear answers, though, were few and far between. We felt torn in more ways than one.

Then life happened. A lot of lifeDuring all of this, we got unexpectedly pregnant ourselves, miscarried, and were left to deal with the loss of our biological child, a child we never imagined we’d ever conceive on our own. Talk about an unexpected, hard and fast detour in the road called life. Though that detour was filled with plenty of heartache, it also came with a blessing in disguise. We found something out that provided the clear answer for which we had searched for weeks. 

While we were dealing with my health being adversely affected by the miscarriage, we were made aware that the imunosupression medicine that most likely caused the miscarriage not only can affect any pregnancies that occur, but there is new evidence that is warning that it could also adversely affect your EGGS themselves

There is still not enough research to make a conclusive decision, since there hasn’t been enough post-transplant women of child-bearing age on it. Just knowing there were even shreds of evidence that pointed that way, however, was troubling enough for me. I knew the drug was toxic for a pregnant woman in any stage (especially the first trimester), which is why we never planned on becoming pregnant and consequently why I miscarried. The thought of my actual eggs being altered by this drug,  though, made feel physically sick. I have taken that drug every day, every 12 hours for almost the past 8 years. I had consumed literally thousands of these pills, during the years of my reproductive prime, without any knowledge of how much this nasty (but life-saving) drug could be affecting my fertility. 

To say I was disheartened is an understatement. Who wouldn’t be?

Even though I’m obviously extremely thankful to even be alive after everything I’ve gone through, and know I have no room to complain, I’m still a 27-year-old human. I’m also a woman, a woman with a God-given desire to have the ability to have children. I’m still a woman who wants to believe that, even though I can’t carry our child successfully, my eggs – my contribution to the creation of a human being – are full of life and not death. I’m still a woman who wishes my first child was currently still residing in utero instead of in Heaven. I’m still a human whose heart has been broken too many times to count.

At the end of the day, like you, I’m still a human who, a lot of the time for many different reasons, feels very broken and battered by the Fall and longs for Jesus to come and make everything new, as He’s promised to one day do.

Today is not that day, however.
So we wait.

While we wait, life does not always go as planned. Instead, unlike what prosperity teachers will tell you, life hurts; sometimes it causes what feels like absolutely unbearable pain. We press on, however, knowing that God is good and sovereign, no matter our circumstances.

No, He is not surprised by our circumstances or angered by our consequential emotions about said circumstances. He was human once, after all. All He asks of us is that in the groaning, during the daily war for our heart and our hope, we trust. All He asks is that we believe He is who He says He is, that we believe He has us in the palm of His hand when the waves of life come (and they will) crashing down upon us, that we do not lose heart in the One who has overcome the world.

Though the answer didn’t come the way we imagined, He gave us what we asked – a clear answer. That answer for our family, at least for now with the possible side effects from this particular medication, is a resounding “No.” Maybe someday I will be on different medication and that answer will change. I don’t know. I also don’t pretend to fully understand why He took us, and the precious, willing surrogate and her husband, down this path, either. In my finite thinking, it really just doesn’t make any sense, to be honest. Even though I don’t understand, I’m called to trust that His ways are higher than our ways, as are His thoughts (Is. 55:9).

So, for now, we move on. We don’t just “move on” as ones without hope but instead as those who trust and believe in Ephesians 3:20-21, which tells us:

Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, 21 to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.”

1 Comment

Filed under Adoption, Baby, cystic fibrosis, Health, Miscarriage, Purpose, Sanctification, Surrogacy

Why We Halted Our Adoption: The Answers – Part 21

You weren’t the only one who thought we’d never reach the final post in this series. It’s been a long haul, full of the highest mountain top experiences and the lowest emotional valleys, but we made it. 🙂

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 a new, mysterious word that was going to affect my life, 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.
*For more on the uncertainty that came with the initial results, please see Part 18.
*For more on the time I spent waiting to know our future, please see Part 19.
*For more on a sudden, unexpected change, please see Part 20.
_____________
Numbers talk, and mine had just decided to finally find their voice.

Just a few minutes prior, I was astonished to learn that a few months ago, the predictors used to measure our pulmonary function tests had made a rare and sudden change. This change was so rare, nothing like it had occurred since I started going to that hospital almost 9 years ago. Furthermore, if measuring my past few tests according to the old standards, the lowest my lung function had measured during all of this uncertainty was 97% – a number I had seen many times since my transplant in September 2005, instead of 92% That day in mid-May, it was actually sitting at 99%, a number just as high as it had been in September last year.  No, it wasn’t over 100%, but when you are trying to figure out what exactly is going on and every % is being scrutinized, having 99% (my normal is 98%-105%) of my lung function instead of 95% (what the new standards ranked me at that day), was a huge, huge deal.

Walking into the transplant clinic, re-calculated numbers in hand, I still didn’t know why this change hadn’t been taken into consideration, but I was about to find out. I was a woman on a mission. I wanted answers, and I wanted them now. I was sure there was a reasonable explanation. I just couldn’t come up with one off the top of my head.

I didn’t need answers just about my pulmonary function test.
I needed answers about my antibodies.
I also needed an answer on whether or not I was pregnant.
It was going to be an eventful visit.

I got all checked in, had my vitals taken, and got settled in my spacious patient room. It wasn’t long before my nurse, Kerri, came in and got the visit started. I really like Kerri. We get along quite well. She asked me the usual questions, told me about her weekend, and listened to my findings in regards to my pulmonary function tests. She seemed intrigued but clearly didn’t want to say much. She and I both knew Dr. Kirby was the one with whom to speak about this issue.

He wasn’t too far in timing behind her and, like usual, showed up relatively quickly. Unlike usual, another doctor was with him, tagging along to learn more about the never-dull world of lung transplantation. I had nothing against the guy, but I wasn’t really wanting to “confront” my beloved doctor in front of a complete stranger. I didn’t want to make him look bad in front of his colleague, but I had some things I had to say. Even though we had unexpected company, my curiosity couldn’t wait.

For the next several minutes we went over what I knew at that moment compared to what I knew when I drove into the parking garage approximately two hours ago. The poor doctor who came with Dr. Kirkby just silently stood in the corner while we discussed the ends and outs of pulmonary function tests and the change that, as far as I could tell, hadn’t been considered when analyzing my data since the miscarriage.

I asked extremely pointed questions, and like I expected, I got extremely honest answers. No, the sudden change hadn’t been taken into consideration. It was what it was. You can’t change the past. On the other hand, even if my lung function hadn’t undergone as large of a percentage change as first suspected (which was a very good thing), there still had been a change, a change worth investigating with everything else going on. Yes, the number had gone back up, but even if you used the old standards, it still wasn’t my highest reading recorded since my transplant. When you have antibody issues, it is better to be safe than sorry, after all.

Furthermore, the bronchoscopy would have still been necessary with all the antibody issues I was currently experiencing, since I hadn’t had any biopsies taken in 6 years; that’s like a lifetime in the transplant world. At that point, the pH probe test I also did 6 weeks prior wasn’t explicitly labeled “necessary,” but at least it was now done and showed I wouldn’t need surgery anytime soonIt wasn’t worth focusing on whether or not I should have done it. It was over. Bottom line, we were all thankful my lung function was up from 6 weeks ago and also higher the two times before that day than previously thought. For the sake of clarity, we agreed from now on, we would use the actual reading instead of the % any time my test results were discussed, in case of any more sudden changes in the predictors in the future.We agreed to be thankful and move on.

After months of uncertainty and so much emphasis on a percentage of lung function that never even existed, it wasn’t exactly the explanation I wanted to hear, but I accepted it and still loved my doctor just as much as before. I guess when you have been shown so often how much your doctor and your team care for you, when you’ve felt less than comfortable with – or genuinely cared for by- other physicians over the years, it’s easier to “forgive” oversights from those whom you trust. Yes, some unnecessary worry over my lung function could have been avoided. It didn’t matter, though. Unfortunately, all was not now right with the world. I still had a major antibody issue, one that was more than likely caused by the miscarriage and a serious issue, no matter what “system” you used to measure my lung function.

What I didn’t have, though, was a positive pregnancy test. Thank you, Lord!

Since we no longer had to worry about me being with child (still not sure why I was so whacked out) and my lung function was once again completely normal, our focus was once again on my antibody level.

Thankfully, the good news just kept on coming.

I was also informed that my former doctor, Dr. Astor, who had been in charge of my case from the first time I set foot into that hospital when I was 18 (2004) up until 2010 had been consulted about my antibodies and given his opinion.

“Don’t treat at this point,” was his answer.

Better yet, that was his answer even before the change in predictors for the pulmonary function test was even broached.

Though some in his field would disagree with him, with no signs of antibodies in my lungs, and my lung function so incredibly high, he didn’t find treatment necessary. Trusting his years of experience, Dr. Kirkby agreed with him. Consequently, as long as my numbers didn’t come back sky-high this time around, he made that sentiment his recommendation, as well.

If the numbers were still rapidly climbing, we’d just re-evaluate.
I was sent home to wait – again.

2 days later, my new antibody readings came back.

37% was my new measurement – only 2% higher than 6 weeks before. The numbers thankfully weren’t doubling anymore. No treatment was needed. I wouldn’t need to be seen for 3 months, and then we’d test again. We weren’t too worried at this point, though, since my lung function had gone up, I hadn’t shown any signs of rejection, and there were no antibodies in my lungs. For the first time in over 4 months,  I was free to go back to life as normal. Let me tell you. After everything we had been through the past several months, “normal” never sounded so, so good.

The End…of this chapter, at least. 😀

A new series to come on our plans to move forward with our family. You don’t want to miss it. 🙂

*John and I could never say thank you enough to those of you (strangers and friends alike) who have prayed us through this journey. Your love and support means more to us than you will ever, ever know.Whether you choose to continue to follow my blog or not, please keep those prayers coming! Thank you for giving us the privilege of seeing the body of Christ at work in such a beautiful, inspiring way. Though we never would have imagined what all 2013 would entail (thus far), we are so thankful that, though our circumstances have been far from consistent, not only has He remained constant but so have the prayers of the Saints. We love you all.

Leave a comment

Filed under Adoption, cystic fibrosis, grace, Health, Life, Miscarriage, Transplant

Why We Halted Our Adoption: The Change – Part 20

I’d know in a matter of a few hours if not only my antibodies and lung function were still out of control. I would also know if I was most likely soon going to be experiencing déjà vu and consequently making my health situation even more complicated with a second pregnancy.

I just wasn’t sure if I was ready to hear all of those answers
Too late. Ready or not, answers were coming.

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.
*For more on the uncertainty that came with the initial results, please see Part 18.
*For more on the time I spent waiting to know our future, please see Part 19.
_________________

Surprisingly, my transplant nurse, Ashley, stayed calm while I told her about my possible second conception. No, you can’t make this stuff up. 

I made sure she knew I didn’t think I was pregnant. I had no idea at that point. With the strangeness going on, though, there certainly was a possibility, at least in my mind. I wasn’t convinced either way, but I knew well enough that I needed to be cautious and not just play a “wait and see” game. She agreed and ordered the HCG blood test, the exact same test that didn’t do me any good last time due to the type of “chemical” miscarriage I had. I knew this time, though, I was testing much sooner. As a result, if I really was pregnant, the test should work; we would catch the hormone in time before it, if things went like last time, rapidly dispelled from my body.

To be honest, walking into the lab to give my multiple viles of blood, whether or not I was pregnant again was the least of my worries. It was what it was. There was nothing I could do to change it at that point. Worrying myself to death for the next 2 hours wasn’t going to do any good. We certainly weren’t trying to conceive again. We hadn’t been the last time, either. We were using protection and still ended up “scoring a goal,” so anything was possible. I could definitely see it going either way and was learning toward it coming back negative. Please, Lord?

While my blood left my body and filled the tubes of all shapes and sizes, I kept my mind focused on the fact that God was still going to be sovereign and good, no matter the outcome of the test. He was still going to be sovereign and good, even if I lost another child. He was still going to be sovereign and good, even if I had to go into treatment for the antibodies and felt crummy the rest of the summer. He was still going to be sovereign and good, even if I went into rejection and lost my life because of one, or more, unplanned children. He wouldn’t change, just as He has remained the same since before the foundations of time.

I had my battled wound dressed and took the elevator up to do my pulmonary function test, since if I was pregnant, I was skipping my chest x-ray. The number of times I would do the tests was going to be determined by how things were going after 2 or so tries. Once I got there and settled, I was ready to battle myself. My competitive nature hadn’t waned since the last time I had blown through the device over and over again. Last time I was never satisfied with the numbers that popped up on the screen. After 1 blow, I knew things were going to be different this time around. I could feel it. After much fewer attempts, I settled with getting 95% instead of 92%. I could have continued to repeat the test, but I wasn’t in the mood. I was satisfied with my efforts. The main number wasn’t a huge improvement, but it wasn’t another decrease! We were moving in the right direction. Lord-willing, I wasn’t pregnant again, and my antibodies were recovering, as well.

Right before I grabbed my stuff to go, my respiratory therapist said something that would change everything.

I don’t remember her exact question, but it was something to the effect of, “Did the new standards cause your numbers to go up or down?” Confused, I responded, “New standards?”

It took her only five minutes to explain to me that a few months ago, the predictors used to measure our pulmonary function tests had made a rare and sudden change. This change was so rare, nothing like it had occurred since I started going to that hospital almost 9 years ago. 

Speechless, I let her continue. After we printed off my last 4 tests (spanning back to September 2012), we discovered that what was set as the standard for receiving a 100% had now been raised, at least for me. Now both of us were intrigued. So much so that we manually went back through and re-calculated under the old standards (the ones I had been tested under hundreds of times) my last two tests (April 1 – the day my miscarriage started & 1 in Mid-May) and learned that under the old standards, since the miscarriage, my lung function was neverever at 92%.

In fact, the lowest it had been measured during all of this uncertainty was 97% – a number I had seen many times since my transplant in September 2005. That day in mid-May, it was actually sitting at 99%, a number just as high as it had been in September last year.  No, it wasn’t over 100%, but when you are trying to figure out what exactly is going on and every % is being scrutinized, having 99% of my lung function instead of 95% (what the new standards ranked me at that day), was a huge, huge deal. 


Immediately, I felt a million weights lift from my shoulders, yet was in so much shock, I didn’t know if I could move. I had to move, though, because I couldn’t wait to go to clinic, calculations in hand, and
speak with my team about my incredible findings.


During my walk to the other side of the hospital, whether or not I was pregnant was the furthest thing on my mind. What had just occurred was all I could think about. As I re-played the previous 10 minutes in my mind, I admittedly had an obvious question – “Why was this change not taken into consideration?” After literally months of uncertainty, I was thrilled with, but also deeply confused by, my new-found results. Was this going to change everything? I was about to find out.

Part 21 to come!

2 Comments

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

Why We Halted Our Adoption: The Wait 2.0 – Part 19

If you would have told me during the miscarriage what was ahead of me when it was over, I couldn’t have handled it. The grief over losing our child, after everything else that had already occurred in a short amount of time, seemed like more than enough for one person to bear. I’m not one to feel sorry for myself, but at that point, even I was crying “uncle.” Little did I know when I wrote Part 13 of this series what the next few months would entail.

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.
*For more on the uncertainty that came with the initial results, please see Part 18.

___________
Waiting. That is pretty much all I got done health-wise for well over 2 months. To say it was a test on my faith and my patience, as well as John’s, is an understatement. There was nothing else we could do, though. It was our cross to bear . Just when we thought answers were just around the corner, we waited, and then we waited some more.

In the meantime, we tried to operate as if life were normal. Thankfully, the whole time I felt absolutely fine, so trying to go about life really wasn’t that difficult. We weren’t fooling ourselves very well, though. No matter what you say, life isn’t normal when you’re sitting around waiting to hear if you have to undergo major treatment. Due to the indecision, we couldn’t move forward with our family plans while we waited. I couldn’t guarantee my employer I wouldn’t be taking significant time off soon. I couldn’t promise my sweet friend that I wouldn’t be a sickly-looking bridesmaid.

I think of one of the hardest things, though, is I couldn’t even fully process all the emotions from the miscarriage, since my health had seemingly been suddenly hijacked since our loss and therefore demanded my time and attention. If you followed it, in my “Redeeming Miscarriage” series, I did do my best to be honest with myself (and you) about my grief. Now that you know what was really going on at that time, though, could you understand how emotionally spent and conflicted I truly was? I loved the Lord, and I believed strongly in His sovereignty and goodness, even amidst my suffering, but I was still human and very much feeling the effects of  living on this fallen earth. 

I had to be on constant guard for the enemy’s attacks. I was weak, and he knew it. If I wasn’t careful, I was either coveting my friends’ families, or wallowing in self-pity for my lot in life. I was either partly upset I ever even conceived a child, or extremely upset thinking about John getting to marry and have a family with another woman after I die due to us unexpectedly conceiving our biological child, who also died. Yes, I realize that last example is slightly dramatic, but when you live my life, you know that dying before your spouse, and him re-marrying, most likely is your reality; my current situation just brought to surface the emotions that surround that probable fate, emotions to which most could never relate.

There were also those nagging questions that plagued me late at night. “When is enough, enough?” “Lord, is it wrong to want to glorify You through “normal” life, instead of through trial after trial?” “Am I really going to end up dead after all of this?” “Will John resent me, if I do?”

For the first time in a long time, I felt like I was going to break under the pressure of life. I longed to go back to January 1, 2013 and re-start the year. I longed to go back to when were just going to adopt and be done with it. I couldn’t turn back the hands of time, though. I had to live in my present reality, and that reality was filled to the brim with uncertainty.

Answers were finally promised toward the end of June.

The miscarriage had happened the first week of April. I was first approached about there being a problem the end of that week. Over two-and-a-half months later, I was ready to know the direction in which my life was going. I was ready to know if motherhood was in my immediate future, or if I was once again going to have to put my desire for a family on the back burner and deal with more pertinent, life-threatening issues. I didn’t know what was ahead of me that day I once again drove down to Columbus, but I knew that I was coming home with answers; after weeks and weeks of waiting, that was enough for me. 

Going into another day of testing that Monday, I did thankfully already have one good piece of news. I would not need the dreaded Nissen surgery! Praise God! Neither my doctor nor the GI doctor were convinced that the decline in pulmonary function was being caused by any acid issues. All of my 51 “episodes” of “silent” reflux had occurred very low in my esophagus, which meant that it wasn’t a danger to my lungs. As excited as I was about keeping my ability to throw up (you would be, too!), I also knew that meant there had to be another reason why my lung function had decreased; namely, most likely that was because of the antibodies. We had waited several weeks to re-test them to give them time to either stabilize out or show that they were going to continue to rise. If they continued to rise, and my lung function continued to go down, I knew treatment was inevitable. 

I also had another problem and another secret. I was afraid there was a chance I was pregnant – again.

I hadn’t missed my period (yet), but my body certainly wasn’t acting “normal.” I was having a few of the same pregnancy-like symptoms I had before the miscarriage. I wasn’t having nearly as many as when I actually was pregnant, but I wasn’t far enough along in my cycle at that point for the majority of them to start making their appearance. I had purchased a few pregnancy tests that weekend, took them a few mornings, and thankfully found them all to be “negative.” I just didn’t feel right, though. I knew the chances of having a false negative before your missed period were extremely high, though, so I didn’t have much confidence in my $3 pee sticks. I also knew that your hormones can cause bodily changes after miscarriage, so I took that possibility into account, too. I didn’t understand why those wouldn’t have occurred right away, but “blaming” my new-found weird cycle on hormones made me feel better. In all my life, though, I had never had such strange things occurring other than the time I was pregnant, and it was only after the fact last time that I put two-and-two together. Last time, I hadn’t even began to think I was pregnant at that point, so trying to decipher if I was again or just being paranoid was difficult at best. What was occurring wasn’t the exact same as just 3 months prior, but it certainly wasn’t my “normal,” either. I was also very aware of my hyper-sensitivity to things of this nature after the miscarriage. I knew my mind could actually be playing tricks on me this time, instead of warning me like last time. After all, like I said, I wasn’t exhibiting nearly all the symptoms I had before, but then again, I hadn’t given myself the time to be showing them, either.

I wasn’t feeling like the Lord was telling me I was pregnant like last time, but I wasn’t feeling like He was telling me I wasn’t, either. I felt He was silent on the issue, which didn’t help me feel any better. John was skeptical. One minute he didn’t believe I could possibly once again be with child, and the next he was wondering if lightening had indeed struck us twice. I felt conflicted, too.  One minute I felt calm about things, and the next I felt overwhelmed and scared. That morning, though, I was completely at peace, which even shocked me. The Lord must have known my emotional limits. I couldn’t sit around like last time and wait to find out what was going to happen, though. I had to know, and I had to know now. Waiting wasn’t an option.

Just like last time, during my commute down, I picked up the phone and let my transplant team know that morning I would need yet another blood draw for a HCG level. I’d know soon if my antibodies and lung function were still out of control. I would also know if I was most likely soon going to be experiencing déjà vu and consequently making my health situation even more complicated. I just wasn’t sure if I was ready to hear all of those answers.

Part 20 to come!

Leave a comment

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

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!

Leave a comment

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

Why We Halted Our Adoption: The Tests – Part 17

As one who thrives off spontaneity, I don’t mind bumps, or even the occasional pothole, in the road called life. Note – I said occasional pothole, not the never-ending, sanctifying “pothole” that has been 2013. 

Over the past few months, though, I’ve learned to embrace the craziness that is my life and have an attitude of thankfulness for being afforded the opportunity to see His hand in so many different, difficult circumstances. After all, how many other people can say they have experienced the highs and lows of adoption, surrogacy, miscarriage, and transplant all within a few months? 😉

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.
________________________________________________

I like little get-a-ways with my husband.
I don’t, however, like them being booked for medical reasons instead of pure pleasure.
I guess you take what you can get.

We headed off to Columbus with our deeply discounted hotel reservation in hand, not sure what the next two days held.

We pulled into the familiar Outpatient Parking Lot for Nationwide Children’s Hospital and walked hand-in-hand to the new GI center for my first procedure, placement of the 24 hour pH probe.

If you recall from Part 16, 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 not too long, my name was called and we headed back.  We went through the usual taking of the vitals, an explanation of how the probe would work, what I could and couldn’t eat while it was inserted, what to do with the buttons on the holster, etc.

Before I knew it, it was time to have the probe placed. From what I had heard countless times from others on a Facebook transplant group, the actual placement would be “horrible,” not to mention the next day of my life. According to some, the next twenty-four hours would be known as the “longest day of my life,” and I would be “in tears” by the time I got the probe out. Furthermore, if the results came back poorly, and I had to have the Nissen surgery, I could pretty much kiss life as I knew it goodbye. Let me tell you, nothing psyches you up to get something done to yourself like reading through dozens of depressing posts from others about their experiences! 😉 Needless to say, after hearing numerous depressing accounts from so many others, I came into things with a lot of trepidation and preconceived, ill notions.

I can’t speak for the others, but I’m happy to report my experience with the tube insertion was far from traumatic. In fact, I was labeled the “best adult patient they’d have seen,” since I didn’t make a peep during the minute or so the few feet (literally) of very, pliable thin tube were placed down my nose. Was it the most comfortable feeling? Of course not! Did it make me feel like I was going to gag? Sure! As I’ve always said, though, what doesn’t kill you only makes you stronger! I’m never been one to whine or freak-out about medical procedures, so I should have known from the start that I’d be OK.

I was whisked off to get an x-ray to make sure the tube was in its proper spot. Once that came back fine, the part of the tube that was sticking out of my nose was taped to my cheek, and I was free to go. For the next 24 hours, I was going to be a prisoner to the tube and the holster on my jeans. Before we left, we chatted with the nurses, who were extremely friendly and helpful, and headed back to the parking lot. The entire thing only took about an hour, which left us the vast majority of our day.

You’re probably asking, “What exactly does one do with a tube in their nose for 24 hours?!”
Well, if you’re me and have no shame, lots of things!

I certainly wasn’t going to waste a day in Columbus sitting in a hotel room, just because I happen to look like a freak and every time I took a step, felt the tube making its presence in the back of my throat (weird feeling, let me tell you). We went and made the most of our day. We walked around Easton (an outdoor shopping center), went to Polaris (an indoor mall), and went to Cheesecake Factory (my favorite) for dinner. Trying on clothes wasn’t the easiest, or fastest, thing to do with a tube in your nose and a holster attached to it, but it certainly made for a fun time! 🙂 As you probably suspected, I got stared at dozens of times during our adventures. If you know me, though, I’ve never been one to care about what complete strangers think of me, so I didn’t mind being the subject of whispered comments (like I couldn’t tell they were talking about me – silly people) said by those with whom I came in contact.

During the course of that day, you name it, we did it. I wouldn’t have had it any other way. You only live once, right? 😉

I can’t say I slept like a rock with the probe – hardly so. Though it disturbed my sleep, it was tolerable. I managed to get a few hours of shut-eye before it was time for testing day #2. I will admit by that morning, I was ready for the tube to come out but far from being “in tears.” I probably shouldn’t have, but now that I had experienced the “horrible probe” for myself, while we drove to the hospital that morning, I couldn’t help but laugh at some of the comments I had seen prior to having the test done. In all honesty, I was baffled by how different my last 24 hours were compared to what had been described time and time again. After living with it myself, I just didn’t understand people’s extreme hatred for such a small piece of tube. I couldn’t speak for them and their experiences. Maybe 99% of people really do have a much worse time with it than I did. Once thing is for certain, though: their comments had me all upset and worried about having the pH probe for nothing! Honestly, I thought the whole thing was a complete breeze. No, I wouldn’t voluntarily sign-up to have it again, but on the same transplant board on which I had read so many “horrifying” tales of individuals’ 24 hour experiences, I was going to be sure to write a very positive review of mine. Others deserved to know the pH probe test can actually be a fun experience, if you don’t take it too seriously.

Don’t get me wrong. At that point, I was still adamantly opposed to having the dreaded Nissen surgery and fervently praying I didn’t need it. Like I said, I hadn’t minded the test to determine if I had a problem, but the thought of having to actually go through with the surgery itself still wasn’t appealing to me – at all.

Once we got back to the hospital, it was only a matter of 20 minutes or so before I was freed and could breathe out of my nose once again. The nurses laughed profusely hearing about all the things I did during my time as the tube’s prisoner. I was happy to bring them some joy, as I’m sure that most people they see (at least from what they told me) are grumpy and far from congenial.

We said our goodbyes, went and got my port accessed, and headed off to our next stop – the bronchoscopy suite.

Now when you think of the word “suite,” what comes to mind? If you’re like me, I picture a very large room (with a view) with a king-sized bed that has a pillow-top mattress and sheets made out of the finest silk. I envision a white, terry cloth robe wrapped around my skin, as I light candles around the perimeter of the already-filled jacuzzi. Oh, yes. Can you picture the tranquility with me?

Sadly, this wasn’t the type of “suite” that awaited me in a different part of the hospital. Instead, I was given a windowless box for a room, a far-from comfortable hospital bed with stiff, old sheets. I was, however, thankfully spared from the paper-thin gown, though sadly no soft robe awaited me. John was given a chair in the corner. Do you know the saddest fact of all, though? I know for the aforementioned items our insurance company paid far more than we would have for the grandeur previously described. Oh, the joys of hospital life! J

We made ourselves “comfortable” and settled in. It wasn’t long before my doctor and nurse were in and the pre-op conversations began. We quickly went over how I’d been feeling (great) and how I tolerated the tube (perfectly).

All was well – that is, until we went over my blood work taken earlier in the week which was finally back from processing. We learned that in a matter of 6 weeks, my antibody count had risen from 17% to 35%. It hadn’t only increased again since the miscarriage, it had doubled. That fact wasn’t good news. No, that was not good news at all.

After such an easy and enjoyable day the day before, talk about taking the wind out of someone’s sails. It became quickly apparent that it was a very good and necessary thing we were taking biopsies of my lungs that day. Maybe the issue really was sudden “silent reflux” (which at that point didn’t sound so bad, after all), but I was skeptical at best (even before hearing the latest antibody numbers) of that being the culprit of my downturn in health. At least in my mind, with my antibodies seemingly out of control, it did not seem plausible that they weren’t contributing at all to my decreased lung function.

After we finished chatting and I signed what I liked to call the “you-could-be-harmed-or-even-die-during-this-procedure-but-now-you-know-and-are-still-giving-me-legal-consent-to-do-it” form, it was time to kiss John goodbye and go off to la-la land for a while.

As I awaited the anesthesia to kick in (I don’t go down easily – shocking, I know) and the bronchoscopy to begin, my mind was plagued with the questions that had been haunting me since I was first told about the mysterious antibodies less than a week after we lost our child.

“What is happening to me, Lord?” “Are we ever going to be able to have a family?” “When is enough, enough?” “Am I going to die because of this?”

If antibody-mediated rejection was indeed setting in, time was of the essence. No second could be wasted. It didn’t matter how I felt. Something was up. The elevated antibodies and simultaneous decreased lung function were players in a developing story; that story was just a subplot in the larger tale called “my life.” At that point, I was just praying the sudden subplot didn’t develop into the main plot, that the whole tale wouldn’t be labeled a “tragedy,” where the protagonist (i.e. me) meets their demise in the end.

Part 18 to come!

 

Leave a comment

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