Friday, March 9, 2018

I'm Glad I Didn't Know

I've said it before, but I'll say it again.  Sometimes being part of the CF community is hard.  When Elias and I were dating and when we first got married, we didn't really know anyone else with CF.  Facebook groups weren't a thing as far as I know, at least they weren't popular if they existed at all and honestly his health was not in a place where either of us felt like we needed that kind of support.

The longer we were married, the more various things came up that others didn't quite understand.  I wanted to connect with CF wives that were on the same infertility journey we were on.  Then as his illness progress, I wanted to talk about what we were going through and ask questions to those who had been there or at least understood where we were coming from.

Thankfully, I found another CF wife through a CF FB group and I have since connected with several groups for spouses of CF patients or lung transplant patients.  In these groups we have some light hearted conversations, but we also talk about some really tough things.

Things I'm glad I didn't know were in my future when we were dating, engaged or newly married.

Maybe that sounds selfish or naive and more than likely I would have just thought that that would never happen to us because we were both convinced that he would have his original lungs until he was in his 60's or 70's because that is what he was told growing up.  Now however, I see things through different eyes.  I see couples who are young and engaged and just starting out on this CF journey together.  Many of them with spouses who are still quite healthy and hopefully will be for a long time, especially with some new promising drugs that have come out.  I see these couples I think that I am so glad that I didn't know what was ahead and that I didn't always have that in the back of my mind or hanging over my head.

Had I known what I know now, there are definitely things we would have done differently that may have preserved his health longer, however I would have also lived with far more fear and uncertainty. Today I read stories of lung transplant recipients that are well over 20 years out from transplant and doing great which gives me great hope.  Then I read stories of those who never even make it to 5 years and my mind begins to wonder where Elias will fall on that spectrum.  I think of when I finish my first step in school in 2 years and what we can do after that, but then in the same thought I wonder where his health will be.

We are not supposed to live in fear and for the most part, I don't anymore.  I can't however turn of the part of my brain that knows how quickly things can change.

Facebook groups are amazing for support and I have built some incredible relationships with women in these groups.  I am so thankful they exist, but they are also a double edged sword and sometimes they can take away our ability to live a life of naivety and blind hope/faith, appreciating the present and not worrying so much about the future.

I'm glad I have them, but I'm also glad I didn't know.

Thursday, December 14, 2017

It's About More Than Just Physical Health

As a doula, one of the things that I was taught is that giving birth is about more than just "healthy mom, healthy baby".  Of course every parent is happy that their baby is healthy and that the mom is healthy physically, but typically the saying "healthy mom, healthy baby" disregards the feeling and emotions of a mom who may be struggling with a birth that did not go the way that she had desired.  Her birth may have been traumatic physically or emotionally.  She may have wanted one birth, such as an unmedicated birth and ended up needing a cesarean and she may be struggling with that mentally and emotionally.  Yet, she may feel as though she can't bring it up because she and her baby are physically healthy and she is told that that is what really matters.

I see this a lot in the lung transplant community as well.  Someone posts something in a Facebook group that they are struggling with.  It might be medication side effects, fears of rejection and/or infection, difficult recovery, depression, anxiety, etc. and inevitably, there will be people who comment "yes I struggle with that, but I can breath!".  I think that every person in lung transplant groups value the gift of breath.  Those in these groups are either waiting for lungs, have received lungs or have cared for someone in end-stage lung disease and through the transplant process.

As Elias got sicker and every breath became more difficult, I used to pause as I walked by him sleeping on the couch to make sure that he was still breathing.  I saw his pain and his struggle and I hated the fact that even if he was ready to die, if his body wasn't ready, then his suffering would continue.

On the other side of transplant, I was initially angry that he needed new lungs at all.  The statistics haunted me and I felt like so much time had been stolen from us and our future.  Then came the long recovery, the change in life plans to ensure that I could care for our family no matter what his future held, the psychological scars, and the medication side effects such as hand tremors, horrible memory, nerve pain in his feet, sweating when eating and more.

I posted once about feeling as though the statistics were this cloud that kind of hung over my head, impacting so many of our life decisions and some people were supportive, but others of course were not so supportive, because well, at least he can breathe.

When people voice their struggles, they are oftentimes treated as though being thankful for the gift of breath and lungs means that they can't also acknowledge the difficult parts of transplant. As if those two things can't co-exist or at the very least, being able to breath should mean that the hard parts are insignificant.

Because of his donor, Elias and I have been given almost an entire extra year together.  He has been given the opportunity to spend more time with our twins than ever before and to develop relationships with them that he didn't previously have.  We can do things as a family, and this year he will not only be home for Christmas, but he will remember it, or at least he will be fully conscious (he still has a horrible memory ;) ).  He CAN breathe and that is something we are incredibly grateful for and something we will always be grateful for.  At the same time, we acknowledge the hard things that we have been through and the things that continue to be hard.  Overall life has continued to get easier and some medication side effects have lessened.  I have hope for the future that isn't always overshadowed by fear anymore.  At the same time, we continue to discuss big future plans with Elias' unpredictable future in mind so that we can prepare for that.

Yes, being physically healthy is a gift and is important. Being able to breath is something that one shouldn't take for granted.  However, that doesn't mean that we should dismiss one's struggles, fears and emotional health because those things are important too.

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.