Wednesday, October 11, 2017

One year since transplant referral

A year ago in October Elias was referred for transplant. I remember that part of that brought us peace and clarity because we had been talking about transplant and if it was time, but we didn't know what his doctor was thinking. It was good to be on the same page and have a plan, but it also signified something else. It was the moment where our focus changed from him getting better, to knowing that he wasn't going to get better. From that day forward the focus became on keeping him as healthy as possible for as long as possible and to get him listed for transplant as he would continue to deteriorate, coming closer to death than I could have ever imagined.

Tears stream down my face as I write this and remember. We had no clue what the next several months would look like. I am still astounded by how quickly things moved and his disease progressed  after that.

One of his clinic nurses told us that normally, testing took about 6 months for one to be approved for transplant, thankfully his transplant clinic did a lot of that testing on site during his three day evaluation. We all knew he may not have 6 more months.

The following month he was evaluated and then his health took a sharp decline in December. He said his goodbyes, I felt so cruel keeping him alive. Telling him to wait just two more weeks until his insurance changed. Two weeks felt like a lifetime for both of us and I wasn't sure he was going to make it. I will never forget the day he told me that he was ready to die, that he couldn't do it anymore.

But he did make it and his new lungs came in the nick of time.

I would have never imagined a year ago that I would now be sitting here, and he would already be 9 months post transplant. I would never have imagined that he would have gotten sick so quickly. Looking back those months felt like an eternity with my daily fight with the insurance company to get him coverage that would allow for him to be listed. Yet at the same time, they passed all too quickly because I knew he needed more time. Losing two week to communication breakdowns at his transplant clinic felt devastating.

I often say, and you have likely read it before, that life is not what I imagined it would be post transplant, but it is far better than it was last year and for that I am eternally grateful to his donor, her family and to God for his lungs that came just in time.

Thursday, July 6, 2017

When Being Part of a "Tribe" Hurts

As a Down syndrome mom and a CF wife, I have sought out support via Facebook groups. These groups are made up of Down syndrome mom's of a variety of ages, those that have adopted children with Down syndrome, those with multiples, and those parenting little ones born the same year as Asher. I'm also part of CF wives groups, Project CF Spouse and Lung transplant groups. Each serves their own purpose and I tend to turn to different groups for different questions and different support.

These groups can be amazing when one needs support and has a million questions that others with other experiences can chime in on. They have equipped me with questions to ask Dr.'s and given me hope when it was fading.

At the same time, they can also come with pain. When you are part of a group of mom's with children who are more prone to illness, many of whom were born with heart defects, there can be a lot of pain, sickness and even death. Each time I read a story of a little one who has passed away from heart complications, pneumonia or a common, seemingly minor illness that turned fatal, my heart breaks. My heart breaks for their family and for their loss. For the loss of a little life that will leave a gaping hole.

As a CF wife and a transplant wife, these groups can also contain a lot of pain. Like the Down syndrome groups, there are amazing stories of hope, encouragement, laughter, victory and joy. At the same time there are a lot of stories of sickness, concern, fear, and even death. And again, even though I may not have ever met these individuals in real life, my heart breaks and aches for them and their families.

There is also another reason though that being part of these tribes can hurt so much when we hear of these losses, and it is because we are all acutely aware that it could be us and our families. Not that we ever want to make someone else's loss about us, because it's not about us. It's about them and their family and their loved one. At the same time we might be affected deeply, profoundly and personally because we know that we could be one illness away from standing in their shoes, making the same unthinkable announcement.

Asher did not have heart issues like many babies with Down syndrome and has been quite healthy. The stories of little ones passing away in my mom's groups affect me deeply because I can't imagine losing one of my babies, but I don't often feel like that could be me at any time. It could be, because there are no guarantees in life, but it's not something I have to stare in the face every day.

Elias on the other hand is a different story. I always thought he was a really healthy CF patient until last year when his health plummeted faster than I knew was possible. This week, the loss of a CF spouse has affected me deeply and profoundly. Maybe it's because there are similarities in their family to our family. Maybe it's because Elias was so close to not getting his lungs in time or maybe it's because I feel our future is less guaranteed than others. This family's loss is not about me and my grief or how I have been affected in ways that have surprised even me, it is about them and their grief and their loss and how they will be the ones that have to move forward, yet we still hurt for them, with them and sometimes for what that would look like if it was us.

Sometimes there is so much grief and pain and hurt in the "tribes" where we also find so much support, that we have to step away for awhile to keep ourselves mentally healthy. It's not healthy to live in fear of what if when one has a healthy, or mostly healthy, child or spouse at home. It's not healthy to frequently grieve possibilities that aren't happening or grieve a person that is alive and well.

Having these groups offer so much: hope, support, encouragement and understanding, but sometimes we have to also take care of ourselves and our mental health and take a step back for a bit.

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.