Some of you already know Amy of Buffalo Wings and Butterflies. She has been one of my bloggy friends since way back when and I
stalk read her blog regularly. (Even though I don't comment often, Amy, I'm still lurking reading.)
She has two adorable little boys, Dale, 5 and Alan, 2, a transplant recipient. You can read Alan's whole transplant story here and what follows are some questions Amy has graciously agreed to answer about the various challenges and blessings of life with a transplant recipient.
(It turns out that I'm a touch nosier than I had realized and asked Amy ten questions, so this will be Part 1 of a two part series.)
1. What is the biggest challenge as far as daily care of a transplant recipient?
Before I start in on any answers, there are a few ‘disclaimers’ I feel I need to share. Number one, although each has its similarities, every transplant experience is different, especially when you begin dealing with different and/or multiple organs (Alan‘s transplant was for a new liver). For the most part, I can only answer based on our experience, which, like most others, was typical in many ways, and very unique in others.
And finally, as a general rule, the first year following a transplant is the most difficult. The long term outcome is often much easier and more pleasant than that first year following the transplant.
So, that being said, I am going to answer your first question in two parts.
One of the biggest challenges for us the first year was due to the rare complications Alan had. He got sick a lot those first months, and we were in and out of the hospital often. So added to the stress of a transplant and the stress of a cycle of Alan getting really sick every few weeks was the simple fact that our life was constantly interrupted. Even if you face that with a good perspective (not much is as important as the life and health of your child, right?), it is still hard to not be living a ‘normal’ life. We missed Dale a lot. We missed cleaning the house and doing the laundry and buying groceries and doing school and cooking meals. But thankfully that time didn’t last forever!
As far as where we are now, our biggest challenge is making sure Alan has plenty to drink. His anti-rejection medication is hard on kidney function, so it is important for patients to have lots of fluids. We try to give Alan at least 12 ounces of water each day, and more would be even better, especially in the summer. This can be a challenge with a toddler!
2. When are transplant recipients considered no longer at risk?
As far as being at-risk for easily “catching stuff” from others, this varies widely from individual to individual. Barring any other conditions, the biggest factor is how high a dose of immunosuppressants (anti-rejection drugs) a person is on. The easier one’s body accepts a new organ, the less the immune system is suppressed, and the better it can fight against common colds and viruses.
Alan is, thankfully, on a relatively low dose, so we feel comfortable taking him to church and other public places. Even at that, we are still very careful about hand-washing and avoiding contact with people we know are or have been sick.
A person is never completely free from risk of complications from transplant. The farther from surgery you are the less likely you are to have complications, but they do happen. This is why transplant recipients are followed with routine (usually monthly) blood work and clinic visits once or twice a year when everything is going well, and more often when things are not.
There is always the chance that somewhere down the road a person will need a second transplant. Not in every case, or even in most cases, but it does happen.
3. How do you decide if Alan is ready to go to church or other places with large crowds?
I was looking back through my blog archives the other day and came across the entry recording Alan’s first visit back to church after transplant. It was in June, six months after. Since then we have always felt most comfortable being out in warmer months, away from cold and flu season. We are also more comfortable taking him to church than other places, since our church is small and very aware and conscientious of our situation. In fact, once within the past year our small church was home to one transplant recipient and two individuals on chemotherapy. To this day we still have huge bottles of hand sanitizer all over the building.
It was a long time before I was comfortable popping him into a shopping cart. At first we carried disinfectant wipes to clean it up and now we usually use a cloth seat cover that covers the entire seat / handle area.
There was a time when Alan was severely at-risk of infection as a side-effect of a medication he had been on. At that time we didn’t go anywhere.
4. What considerations do you keep in mind when traveling with Alan? (Do you try to stick close to a major hospital in case you need one?)
YES on sticking close to a major hospital, but much more so within that first year than now. Alan had some serious complications his first year post-transplant. At one point we did risk a trip to visit my in-laws, Alan’s Grandma. He was 20 months old and had never been to her house, whereas we used to visit once or twice a year. On this visit we would be over 300 miles from Alan’s transplant center and were pretty nervous about it. Probably the only reason we took the trip was because we would be staying within half an hour of Arkansas Children’s Hospital. Before we left we typed up detailed directions from Grandma’s house to ACH, all the way down to how to get to the ER entrance. We also included the hospital’s phone number so we could call ahead, and an information sheet with all the phone numbers to Alan’s doctors, his medication list, and a detailed history of his transplant and complications. Thankfully, we didn’t need any of our careful preparations and returned home a few days later without incident.
These days we don’t face nearly the urgent situations we used to, and feel much more comfortable traveling (for what little traveling we do). We always make sure to have a thermometer and Tylenol with us in case of fever, and as a habit we will probably always at least have a general idea of how to get to the nearest ER.
5. Was there ever a time when you thought, "This is it. I'm going to lose my baby."? What got you through that?
We experienced some very scary moments with Alan in the first year after transplant due to some complications. It is very interesting to me to look back on those incidents and realize how calm I seemed through the most intense times. In the worst moments I was often so focused on what was happening, what the professionals were doing, and what I could and should be doing (sometimes a lot, sometimes very little - a helpless feeling). I know that God gave me the strength to push through those times. There have been hundreds of people pray for Alan and for our family. It was answered prayer and God’s goodness that brought me through that.
For me, the fear came after a situation was under control. I would (and sometimes still do) look back on what all had happened and almost lose my breath with the realization that I could have lost my baby. That had it not been for God’s blessing of life and the skill of the doctors and nurses and paramedics, things would have turned out much differently. It can still make me cry to think about it. I am so thankful that it always turned out the way it did and I have a healthy little boy. I am also very thankful for the strength God gave me to stay strong in the moment. It was His strength, not mine!
Thank you, Amy!
Everyone, stay tuned for Part 2, and if you have any questions of your own, feel free to add them in the comments.