Sunday, April 23, 2017

Transplant and Infertility

Infertility awareness week begins today. Most days, infertility is far from my mind. If you have followed our story for very long, you know that it wasn't always that way. In fact it used to consume nearly every thought, but now I can go quite a long time without thinking about fertility or infertility. Then, out of nowhere, that familiar sting or pang of jealously will return, catching me off guard and making me wonder, "where did that come from?".

I have always wanted more than two children. When our twin boys joined our family I was indescribably grateful for the blessing that they were to our lives and family, but I was also convinced that more children would be in our future. I had plans and hopes of eventually adopting internationally and eventually trying again for a biological child (more for the experience of bearing a child than having a child with our genetic makeup). I think I was convinced that our family couldn't feel complete with two children, or maybe it was more that I didn't think it could feel complete if it didn't look the way I had dreamed of it looking long before we had children.

As the months passed with our two sweet boys, I came to the conclusion that despite the fact that I would love more children, I could indeed be happy with our two boys and our family could be complete with the four of us. Maybe our hearts were being prepared for just that.

Last year, before we knew what was to come, Elias and I had started talking about trying one last time for a biological child and when we might  do that. He wanted to do it sooner than later. I felt like I was in the trenches with two two years and couldn't imagine adding anymore children to our family. As he got sicker, we both new that this was a conversation that was going to be put on hold, possibly permanently. Our focus became about keeping Elias alive for the two little boys we already had. I had no idea how fast things would progress with his illness, all I knew is that caring for two toddlers and a husband in end stage lung disease was more than I could handle and a third child had no place in that. We didn't even know if Elias would receive a transplant to be around to parent another child and raising three children as a 29 year old widow also didn't sound appealing.

So now what? He has received his transplant. One friend described it as "life-extending" when referring to her own husband's transplant, which I really liked. It acknowledges the gift of extra time while also acknowledging that this is not a cure nor it is a guarantee. There are those that do choose to add children to their family after transplant. There are couples that do IVF or adopt if the husband has CF and there are women with CF who carry a child themselves after transplant. The reality is, for us, with Elias having CF, we are still infertile and now we have the added layer of him being post double lung transplant. We now know what it is like to have children and have him be very sick. We are well aware that that could happen again in the future. We are also well aware that he could have another 20-30 years ahead of him where he could not only parent another child, but watch all of our children grow into adults. This also means that IF we choose to try and have more children, we actually have to choose and be very intentional about that. We can't be a couple that says, whatever happens, happens. We won't be one a couple that is blessed with a surprised pregnancy. We have to very intentionally and definitely decide if adding more children to our family is right for us or not.

Infertility is a fickle thing. It can consume thoughts, or it can lie dormant for awhile and sneak up on you. It can feel helpful when one knows for sure that they do not want children or any more children or maybe just no children during a certain season, but it can be unbearably painful when one would give anything to be a parent or have one more child. Now we find ourselves in a season of life where many of those our age are growing their families and we will be deciding if we will choose to say that our family is complete or if we will attempt to add more children.

Tuesday, April 11, 2017

Finding A Balance

One of the topics that comes up when one is being evaluated for a double lung transplant is a list of things that one will need to avoid after transplant. We didn't get a comprehensive list at that time, were informed that with the patient being intentionally immunosuppressed for the rest of their life after transplant, to keep them from rejecting their new lungs, there are precautions that have to be taken.

Interestingly enough, each center has it's own standards and list. Some sound a bit irrational such as not being around young children at all, others are more reasonable like just don't let young children climb on you and cough in your face when sick.

There are mixed approaches in the post transplant world. There are some that say my new lungs are a gift and I will do anything and everything to protect them, that includes going to extremes if I have to. There are others who say, the point of getting a transplant was to live, so I'm going to do just that, even if that means taking risks.

I can be hard to find the balance between living in a bubble and throwing caution to the wind. Right now we go out in public, but Elias wears a mask if we are indoors in a public place such as the grocery store or an indoor play place. His center would prefer he not return to work for a year to build up his strength and focus on appointments, but he will also be the most immunosuppressed for the first year, so avoiding germs in the workplace might also be wise. Some go back sooner, others aren't able to return to work at all. We use extra caution washing fruits and vegetables now and despite his strong desire for cooked sushi, we will not be partaking in even that for the first year just to be certain that there was no cross contamination. If I get sick, one of us might sleep in a different room and we carry hand sanitizer everywhere. I used to be the anti hand sanitizer type person, but no more. I don't yet use any essential oils on Elias so that I don't stimulate his immune system to reject his organs further and we have told friends and family that if they are sick, they unfortunately won't be able to visit.

We will still be able to travel to places that we have dreamed of visiting. We can continue enjoying family traditions like going camping, he just has to be careful not to sit in line with the smoke from the fire. We were told no real Christmas trees, but other centers say they are fine. That is a choice that we will have to make. Will not going to cut down our own tree take away from Christmas and if it does, do we decide that is one area that we are willing to take a little more risk? Especially since centers with a more strict set of rules didn't warn against that one?

You can ask on forums and get a range of answers or almost any topic, each patient has to decide where their line is. Do the rules in place allow patients to feel as though they can still live life since that was the point of transplant in the first place, or do they restrict them to the point of feeling that they have actually lost a quality of life from going through with the surgery?

We are finding our own balance, figuring out where to take extra caution and what means really living and making the most of this new life.

Monday, February 27, 2017

Let's Be Honest

We've been in the hospital for a long time. Nearly 3 months to be exact. 3 months of ups and downs, good new and bad news, 3 months of hospital food and sleeping in a recliner most nights and 3 months of a lot of sitting. With a lot of sitting comes a lot of time to think.

As I sit and think, I think about what I want to be when I "grow up". I love what I do. I love being a massage therapist, doula and placenta encapsulation specialist. I love the flexibility of being a small business owner and setting my own schedule, but I also can get overwhelmed with all that comes with that.

Even more than that, I realized this past year that as of right now, I can't support our family off of my small business income. The hope would be that I wouldn't ever be in the position again to have to support our family off of my income alone, but that might not be a reality for us.

The thing is, lung transplant does not have great success rates. We were told to see the statistics, but not dwell on them because CFers tend to do better than other transplant patients because they are younger and stronger at the time of transplant. But I'm a numbers persons and when I see the numbers, it's hard to unsee them. 5 years post transplant only 50-55% of patients are still alive. That's the flip of a coin. I'm acutely aware that there may come a time again when I have to single handedly support our family financially and right now I can't do that.

So I've been thinking a lot about other areas that I'm really interested in. I've been thinking about returning to school for awhile so that I actually have options if I want to enter into a new career or if I find myself in a position where I have to support our family on my own.

We have been incredibly blessed to receive so much support that we can live here in Pittsburgh until Elias is cleared to go home and not have to stress about how we will pay the bills and rent both here and in NY. It's been such a gift and incredibly humbling When Elias had to stop working in August, we only had enough finances to get us through a couple of months at most in NY, I wondered how we would get by and I don't want to be there again if we don't have to be.

But there is another thing, something that is even more crucial. Health insurance. As a self employed individual, I do not get employer based benefits and Elias has worked in positions where he either received no benefits or part time benefits that were not comprehensive and left him "underinsured". With the changes that are happening in health care in our country, having employer based coverage might be our only option and that is if they don't deny him coverage based on his preexisting condition.

So I'm thinking about going back to school, so that I have options for a career that I will enjoy and that can hopefully provide health insurance for our family and will allow me to support our family on my own if need be.

Thursday, February 16, 2017

"What Do I Know of Holy?"

Over the past year, my faith has been challenged in ways I didn't expect. I've learned that I understand very little about God and his ways and I've had this desire to explore that further, to "figure out" who God really is beyond what we are told or taught. To really understand the character of God. What I've found is that I have more questions than ever.

I tend to be analytical. I like things that are more concrete like math and certain sciences like myology. With math, there is one answer. There might be multiple ways to get there, but there is *usually* one right answer. With myology or muscles, each muscle has attachment points and actions. A muscle cannot move in way that it's not designed to move and function. It's concrete and easy for me to understand, it's logical and can be rationalized, but the abstract stuff is harder. The gray area where there is more interpretation is harder for me. It leaves me uncomfortable and with a lot of questions that don't necessarily have answers.

I have learned this past year that I don't want superficial answers or a superficial understanding of God. I want to go deeper and I struggle to find comfort in platitudes that are well intended, but not necessarily encouraging. I want to peel back the layers of the character of God, but I also want to be able to be at peace with having a God that I cannot analyze or comprehend. I want to be okay with having questions that have no answers, but I also want to be okay with being uncomfortable that sometimes there are no concrete answers.

When Elias got his transplant just in time, many people talked about "God's perfect timing". We tried to analyze and understand and rationalize why we had such a struggle to get to that point and why those lungs were meant specifically for him. That maybe if we hadn't had those struggles he would have had lungs that weren't as good of a match, or this or that. But God cannot be rationalized.

While we were waiting for insurance and transport it was also suggested that all would fall into place in "God's perfect timing". But what would have been said if he was one of the 22 people who die every day waiting for transplant? What if lungs never came and I had become a widow at 29 with two year old twins? How would the body of believers have supported me in that? We've also been told that how sick he was after transplant and his long recovery is why they like to transplant people before they get this sick. Was that all part of God's timing and plan, to make him wait while he got sicker and result in a more difficult recovery, or did God keep him alive long enough to show up in the nick of time with a good match?

We so want to understand God and rationalize every part of him and how he works, but maybe we're not meant to. Maybe we're meant to know and trust that in the good and bad, easy and hard, sickness and in health that God still good, still sovereign and that he still loves us in ways that we can't understand.

I've had to remind myself many times through this process that God actually loves Elias more than I do and that he understands and knows our suffering, our grief, our anger, all of it. That even when we feel alone, he has not abandoned us. This season of suffering has lead me in some ways into a deeper relationship with God, while also driving a divide between God and I. A divide that with time can be healed and repaired.

Then again, maybe I'm completely missing the mark.

"To begin with, that you can't grasp the wonder of my nature is rather a good thing. Who wants to worship a God who can be fully comprehended, eh? Not much mystery in that." - Papa, "The Shack"

Monday, November 21, 2016

A few months back, when we were just experiencing the tip of the iceberg of Elias getting sicker, another CF wife posted in one of my Facebook groups, asking if any of us ever felt like we at times were losing ourselves to our husband's disease. At the time I didn't understand. How could I lose myself to a disease that wasn't mine? I could see how he was slowly losing who he used to be, or rather, that who he was was slowly being taken away from him, but me? I wasn't losing myself to this disease. I didn't think that way mine to own.

But now, now I get it. I get how as a caregiver, you can lose yourself to someone else's disease. Your entire being becomes about caring for that person and fighting for them when they can't fight for themselves. Endless phone calls that make my blood pressure go through the roof and make me want to pull every single hair out that isn't already falling out because of stress. Trying to balance being a mom and a wife and a small business owner. Spending countless hours filling out paperwork on his behalf, driving him to Dr's appointments, sleeping in recliners in his hospital room or hotels or guesthouses for days at a time, dropping everything at a moment's notice to take him to the ER, and then trying to at some point go home and spend time with our kids, while relieving family who have been taking care of them, while he's stable enough to do so (I don't have a great track record with that by the way). I eat whatever sounds good and is available in that moment (and is usually unhealthy) and hardly ever get any exercise. To exercise I need to convince the boys that they actually enjoy walking in the stroller or go when someone is available to watch them. Practicing self care feels nearly impossible, there just isn't enough time left at the end of the day. Oh and did I mention that I do actually work occasionally?

Some days it feels like this is all I am, that there isn't time for me anymore. There is truly no truer test of love than walking the road of chronic, life threatening illness. You simply cannot fight this hard, day in and day out for someone you don't love deeply. I do it because he deserves it, but also because life without him is almost unimaginable, though I do my best to convince him that we will be fine if things don't go the way we hope, because with time, we will.

I shared with a friend tonight that this all seems so surreal. That last year at this time we had no limitations as a family and this year we are facing a double lung transplant as our only option for a future together. It's still hard to comprehend how his lungs changed so very fast, but I still hold out hope. Each time I talk with someone who has had a successful transplant, my hope grows and I cling to that because I see what we can be given. I'm not naive and I know that our story could be different, but for now I cling to hope.

Sunday, September 11, 2016

Enjoying the extended baby phase

Lately when I pick up Lucas I am struck by how solid and long he feels. He's not particularly tall, in fact he's rather short, but to me it feels like he is all legs. He now speaks in sentences, is pretty much potty trained and tells me "no kisses!" as he wipes them away. And even though he is my baby, he is no longer a baby. At nearly 2.5, he has grown into a little boy who desires independence, and while he still needs his mommy, he likes to remind me that he can do it on his own.

Then there is my sweet Asher. Asher who doesn't yet have many words and still has that new toddler walk to him. Who loves to wave "hi" and "bye" at everyone he sees and can light up an entire room with one of those single words. He loves to kiss everything and everyone right now, making everyone he meets feel like the most important person in the world. And petit, not yet 30 inches tall, he walks up to me saying "ma, ma, ma" and stretching those little arms up at me to pick up him. When I pick him up, his still soft body melts into mine and I get to bask in the extended baby phase just a little longer.

While I don't rejoice in his delays, knowing that everything comes just that much harder for him, I know that I am allowed to enjoy this little extra gift that comes with that extra 21st chromosome because it won't be long when he will be telling me "I do it", or "I walking". When his little body will start to feel a little longer and more solid and he will wipe away my kisses. Today I get to enjoy having my baby be more of a baby a little bit longer.

Sunday, September 4, 2016

The Gift of Time

The weekend before Elias was admitted to the hospital, we began talking about him going on disability or at least cutting back to half time work. The humidity was heavy and it was getting harder for him to breath. I called the Cystic Fibrosis disability attorney to talk about the process so that we could be prepared if we chose that route based on his Dr's appointment the following week. Money was a concern since Elias was our main source of income and received no time off, so he really wanted to work at least 20 hours a week (preferably 30). I wasn't convinced and said 20 should be his max, but disability might be a better option.

However, we never made it to that appointment. On Thursday Elias was admitted to the hospital in Syracuse and we both knew in that moment that he really needed to go on disability. It's humbling to live in a culture where men are expected to provide for their families while not being able to work. Even though women work outside of the home more and more, if one parent stays home, it's usually the mother. Disability has been hard to accept, but I reminded Elias that we have been given a gift. The gift of time. Not everyone gets the gift of time, but we do.

One of the beautiful things that has come out of Elias being home the past two weeks is his relationship with Lucas is changing and growing. Lucas has always been all about mommy. Over the past two weeks, I've been working on growing my business so I'm home a little less and Elias is home all the time. He's now starting to ask daddy to play with him when before it was all about "mommy play". It's been really sweet to see.

A couple of weeks ago I shared a blog post about some of the things I was thankful that Elias and I were able to do before his health declined this year like our year in Gambia, going to the Grand Canyon, even the years we struggled with infertility and had time for just us.

Today I'm thankful for simpler things.

Earlier this summer we went to Water Safari. Our tickets were paid for by The Northern Regional Center for Independent Living and there wasn't a rain date. The weather wasn't looking promising, but we got up in the morning and went. We were blessed with a dry morning with comfortable temperatures, just long enough to fit in most of the rides we wanted to try before lunch and nap time. As we finished our lunch, the rain came, but we were already planning on heading home so that the boys could sleep in the van on the way home. We had gone into this day saying that if the weather didn't work out we could always go later in the summer. Lately I've been seeing a lot of pictures of people who have been going to Water Safari before the summer ends and I have been aware that Elias could not currently go and participate. His health wasn't great then, but he was stronger than he is right now.

Today we went to the zoo. It was hard for him and we knew going in we might not be able to see the whole thing. He pushed through, wearing his oxygen, and even though he was quite tired by the end, he was glad he went. I am so thankful for all of the memories we have made and continue to be able to make. Life has taken on a new normal for us and what we can and can't do will likely fluctuate throughout the coming years, but we will choose to continue to make memories however we can with our gift of time.