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.