Amy, of Buffaloes and Butterfly Wings, has done a wonderfully thorough job of answering my questions about life with a transplant recipient.
The following questions and answers focus on how we, as friends and neighbors, can help and encourage those who have been on this journey.
Do you worry about Dale being exposed to illness, say at church, and then passing it on to Alan?
Yes, this has been a concern, and has happened to us. Our church doesn’t have a Wednesday night program, so when Dale was invited to go with friends to their program earlier this year we decided to let him go. Just a week or two later he brought home a cold. Alan caught the cold and ended up spending 3 nights in the hospital. Sad to say that was Dale’s last trip to Awanas. (Now before you start getting all mad at me for being unfair to Dale, he is only five, and still has plenty of childhood ahead of him for Wed. night church programs. Things are always changing!)
We also home-school, a decision that came along at the same time as post-transplant life. Would we be homeschoolers if Alan hadn’t had a transplant? I am certain of it. But at the time of making that decision, the huge side benefits of avoiding colds and viruses and all that other yucky stuff was a tremendous consideration. I still marvel at and appreciate how many germs my kids must be avoiding by not being in a classroom setting!
What do you appreciate most from friends when Alan is sick?
Hands down, we love receiving online messages at his Caring Bridge site (the site is private because it has our last name on it) or on my blog. The times when he is sick involve a lot of watching and waiting and (as he starts feeling better) sitting around and entertaining him. It is always so encouraging to receive these notes and emails, especially when we are in the hospital.
I also enjoy talking about the details of what is going on with him at any given time, although I worry about boring someone or giving too much information, so I sometimes say less.
What do you wish people understood about what life is like for the family of a transplant recipient?
I think my answer to this contradicts itself. On the one hand I think people are surprised when they hear how normal our life is. Alan isn’t sick or sickly. He is just a kid. Taking his medicine twice a day and getting monthly blood draws for labwork is a simple, accepted part of our life.
However, we are constantly aware, even if in the back of our minds, of Alan’s health. It isn’t worry, but an awareness:
Has he had enough to drink?
Does he seem fussier than usual? Does that mean he feels bad or is just being a toddler?
That kid at story time just sneezed – is she sick?
We also have to be aware of other limitations and considerations. Different doctors and transplant centers sometimes have different guidelines, but many are the same:
Alan can never have grapefruit juice or things containing it (like Sunny D) because of interactions with his medication.
We have to limit exposure to the sun.
He should avoid contact with turtles and other reptiles.
His doctors don’t want him to swim in lakes or public pools.
A time of “quiet” and good health is always a blessing, but never a guarantee. We don’t spend any time stressing over it, but it is a given that you just never know what may pop up or when. And when it does, you instantly are back into “medical mode” until things are resolved again and you are able to return to another time of “quiet”, whether that takes a few hours, a few days, or a few weeks.
What blessings has your family found while living through this challenge?
People have been incredible. Our church family, our immediate and extended family, even people we have never met! They have all been generous with their time and with their money (we were blessed with two fundraisers before transplant to help with expenses).
Other blessings have come through Ronald McDonald House (a wonderful place!) and Caringbridge.org. I highly recommend Caringbridge for anyone going through medical issues themselves or with a child – great way to chronicle the time and keep friends and family updated, all in one place!
The biggest thing to me is to look back on all the amazing ways God has worked and continues to work. Circumstances too amazing to be coincidence, from big things to small details. One example is when Alan was still in ICU just a few days after transplant. He very suddenly got very sick (septic shock). The amazing thing was the ICU doctors were in rounds, and just down the hall from Alan’s door. When our nurse called for help everyone was right there, and in a hurry! Our family can tell story after story of things happening like that, and never without saying, “God is so good.”
Thank you so much, Amy, for giving us a little glimpse of your life. It makes my heart leap to see you giving glory to God in the midst of even the most difficult journey.