Thursday, January 17, 2013

I have been struggling with how to write this post. I want to make sure that it honors my husband, who has been living with Cystic Fibrosis (CF) his whole life. I want to honor his family who have been affected by CF for longer than I've been alive. They have their own stories and they are not mine to tell.   I am also aware that expectant parents could come across our blog, read my posts and be scared off by this one, but I still feel it's a story that needs to be told. If you are an expectant parent, please don't be scared, just keep reading. My story is a different one, I have only been affected by CF for a short period of time. Elias and I have been together for over 9 years now, but only married for 4 and the real impact of him having CF didn't really happen until we were married. In this post I want to portray how our life together is with Elias having CF. It is different from others that have CF, but it is ours and I think that it's important to share and help make others aware of how CF affects lives.

So, I guess the best place to start is with the basics. CF is a chronic genetic condition that affects only about 30,000 in the US and 70,000 worldwide. It causes the body to produce unusually thick and sticky mucus that builds up in the lungs and prevents the pancreatic enzymes from properly digesting food and absorbing nutrients. It ranges from extremely mild where the lungs aren't even affected (so I've read) to extremely severe resulting in either a double lung transplant or death at a young age. In Elias' case CF affects his respiratory system, digestive system (making it difficult for him to gain weight), his liver and his reproductive system. Elias was diagnosed as an infant and all newborns today are screened at birth. For one to be born with CF, both parents have to be carriers of the gene, if both parents are carriers then there is a 50% chance that their child will be born with CF. We often get the question of whether our children would be born with CF and the answer to that is no. Elias is a carrier because he has CF, I am not a carrier which means that all of our biological children would be carriers, but none could be born with CF. If you have ever pursued fertility treatments, you have been tested for the gene, and if you were both carriers your doctor would make sure you knew.

The average lifespan today is 35 years which is a huge increase from a few years ago. Please remember that this is the average, there are children that are born with this disease that die very young and others who are still living in their 70's and beyond.

Throughout the adoption process and before when we were getting ready to serve in Africa for a year, we often got the question, "how does CF affect your daily life?". We have both often times replied that it really doesn't, other than Elias having to take medications and do nebulizers daily. I think that we have answered this way because this is our normal, but when I really think about it CF really does affect our lives. I have to say that I was not at all prepared for the medical bills that came with CF and for insurance to not cover his meds. For those of you that have gotten married young (like we did) imagine paying around $1000 in prescription medications every couple of months. Thankfully NYS has a reimbursement plan that reimburses up to 7% of our income. They are not always prompt, but they have improved greatly in the past couple of years and that check always seems to come when we need it most. However, they have requirements regarding what kind of insurance coverage Elias has to have. It cannot have caps or annual maximums. Now I know that many of you do not like Obamacare, but it has removed these caps and for the first time we have prescription drugs, that have no generic brand, covered and it has been a huge blessing. More and more drug companies are also offering assistance which is awesome and incredibly helpful.

So, I guess what I am trying to say is that CF affects our finances, it affects Elias' life when he has to take 2 hours out of his day to do his nebulizers and therapies, which then affects our life together because it is 2 hours that we can't do something else together. We have to travel to Albany every 3 months for clinic check-ups that last 2-3 hours; we have to always be looking for ways to make sure that Elias gets enough calories (he should be consuming over 3,000 a day) to at least maintain his weight. It affects our travel as we have to be someplace with electricity and refrigeration or at least access to a cooler and ice for Elias' medications. And obviously is has affected our ability to become parents. Please don't get me wrong, we don't NOT play the blame game in our house when it comes to infertility, but there is the reality that 98% of men with CF infertile without the help of advanced reproductive technologies. Before, they were just considered sterile and that was that. There was also a long period of time where it wasn't a concern since most never lived long enough to marry and have children, but thankfully due to modern medicine, that is not the case anymore and more and more men with CF are having children. We have no way of knowing if we would be able to have children easily if Elias didn't have CF and honestly, it's not important because this is where we are and God will use this situation.

So, yes, CF does affect our lives and I don't know what the future holds. Could Elias die young? Yes, but so could I. Most of you interacting with us on a daily basis would not think that our lives are any different because we do live a fairly normal life. Elias will be an amazing father that will be active with our children coaching them and teaching them sports. Our normal will be their normal and they won't know any different until they are older. And who knows, by then there just may be a cure. If you are still reading, then congratulations! I know this was a long post and thank you for bearing with me. I hope you found it educational. I did not write this to make anyone think, "oh poor them", I wrote it because I want to spread awareness of how CF affects lives. Thankfully Elias has a mild-moderate case, has never had to have been hospitalized and can live a fairly normal life. I actually can't imagine him without CF and I know that God has used it for good.

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