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Q & A
Brenda: Once you have had a lung transplant your nutritional requirements will change. Expect to gain weight after transplant as your caloric requirements will be reduced as your body will not need as much energy to breath or perform daily activities. Note that the steroids that are part of the post-transplant treatment will increase your appetite. It is best to seek the advice of your clinic dietician, but a healthy well balanced diet and common sense should keep you on track. If you feel you are gaining more weight than you would like, or have any dietary concerns, you may need to adjust your diet accordingly. Another thing to keep in mind is that you will most likely have to adjust the amount of enzymes you take. Personally, I take less enzymes than I did before transplant. Yes, having to watch what you eat may seem strange for someone with Cystic Fibrosis but life after transplant is full of crazy surprises!
Katarina: In short: you can’t.
In any area of parenting, we learn that there are things that we just cannot ensure our children will practice all the time no matter how important it is for their well-being or how good of a job we’ve done teaching and modelling. (Any grandparent will tell us that!)
When we are not with Dominic we try to make sure that there is an adult who’s aware he has to take his enzymes with food. We either write down for Dominic how many he has to take, or quiz him to see if he knows how to figure it out. He knows that he can call us when we’re apart to check in if he’s not sure.
If he does eat something without taking enzymes first (little rebel!), he will either have no adverse reaction in his guts – and think it’s just fine - or he may have some cramping and/or BMs that are affected by the malabsorption. This is part of his education on living with CF. He knows to reflect on what he may have consumed with not enough enzymes when he experiences certain digestive problems. We are intentional about not shaming him for it; we simply comment on the possible reason for a disruption and emphasize the importance of making sure enzymes match his food intake.
We know it is important for Dominic’s development to experience “trial and error”, as he will ultimately end up being responsible for his own care later in life. If we do not make room for mistakes and learning through experience, he will not develop a proper self-knowledge and respect for the guidelines we’ve taught him. We find ourselves in a constant attempt to strike a balance of age appropriate ways to release control of his CF care and still maintain positive teaching and reinforcement of his daily routine.
Each family will adopt little routines and guidelines that will best suit them and their child’s personality and abilities. Examples include stashing bottles of enzymes with notes in backpacks and sports bags with suggested amounts of enzymes to be taken with various foods or amount of fats, or leaving enzymes at frequently visited places like school and homes of families, friends, and daycare.
Ultimately, making a decision to be ok with the odd missed enzyme dosage will go a long way for the psychological and social well-being of the child as well as care givers and siblings too!
Katarina: I’m guessing this is a universal conundrum that caregivers of children with CF wrestle with very frequently. It can certainly be mentally and emotionally exhausting (at least for me….) Personally, what it comes down to is the fact that I am determined that my fear not be the determining factor in decision-making for any of my children’s activities.
In our house my husband and I often joke that we can hear a cough a mile away. We could be in a grocery store, at a park, at a basketball game, and “rubber neck” it to see where a cough is coming from. Ok… we no longer always look around to see who the culprit is – we know we both hear the coughs – small and dry ones as well as large and “wet” ones – and we cringe just a little inside when our sons are in the vicinity.
We are both teachers, and we are well aware that there are always some kids at school who are sick. With Dominic in grade three this year, we can assume that there is almost always at least one child in his class who has a cold. We know that many children do not cover their cough properly, and that many children do not practice proper hand washing (as much as we all teach them….). There are many days, especially during cold and flu season, when I question sending Dominic to school. Should I keep him home during certain times of the year? Should I look into homeschooling? And when he gets a cold, it’s easy for me to play the blame game and assume that it came from school.
This past winter, once again, I depended on the use of logic and reason to the best of my ability to deal with my worries about Dominic getting sick. The following self-reminders have been of great help to me over the years:
- “Kids with CF get sick; then they get better.”
- When Dominic was first diagnosed as an infant, I had somehow figured that Dominic getting sick for the first time meant that it was all downhill for his health. The word “progressive” had a huge impact on me when we first learned about CF, and I didn’t allow room for him to get a cold or flu and get over it. The above words were shared with me by our CF clinic social worker when Dominic was a baby. He had his first cold, and I was devastated. They hit me like a ton of bricks – in a good way. They sort of stunned me into realizing that like any normal child, Dominic would indeed get colds and flus and would typically recover just like our other children. If he did end up needing antibiotics, I recognized (slowly over time) that antibiotics could be a gift – a tool with which we could fight the problems CF can cause – and I felt less defeated about it.
- Dominic will attend school IN SPITE of having CF rather than not attend school because of it.
- Dominic loves school. His sisters love school. It’s a place where they are free to be themselves and flourish in ways that are beyond what we can provide in our family due to the amazing, diverse staff and student body. The growth that Dominic has experienced in school – intellectually, emotionally, and socially, have FAR outweighed the risk of any colds or flus he may pick up there. CF will not get in the way of what we’ve decided is best for our children’s upbringing.
- The school staff is an incredible support.
- Each year we meet with Dominic’s teacher and any support staff who work in his classroom so they are well aware of the special needs Dominic requires such as taking enzymes before eating, time in class for snacks, avoiding close contact with people who are sick, avoiding using the water fountains, good hygiene, etc. Good communication is central to curbing our worries from taking over. Having supports at school allow Dominic to practice his CF care in places other than our home and gradually grow in his responsibility for self-care in a supported environment.
- Germs are everywhere.
- While I know that schools are homes to tons of germs due to the great number of people who are there every day, we really never know where we pick up viruses and bacteria. Dominic’s antibodies are strong because he’s been exposed to lots of germs in lots of places. We could keep Dominic home from school to avoid him getting sick, only to have him pick up a virus at a private music lesson or at a birthday party – or from one of us! He is growing up to know that germs are everywhere, and that we do not avoid living a full life because of our fear – we use our knowledge and wisdom to make decisions that allow us to be as healthy as we can!
- What will help Dominic grow as a healthy individual in all areas of his life?
- We want Dominic to experience all that he can to help him develop into a well-balanced individual. Fear must not be central in his life, and we need to model that for him. Above all, we are immensely thankful for the awesome individual that he is. We use reminders for ourselves to let go of fear when it begins to rob us of appreciating all the great experiences Dominic has at school, participating in sports, and at other gatherings where there are large groups of people.
Brenda: For someone without CF getting a cold can be a minor inconvenience or a few days off work. However, for people with CF it can be something very different. Depending on your lung function and overall health status you may need to go see your doctor and start antibiotic therapy (oral or IV), or even be admitted to the hospital. You will most likely have to increase the amount of physiotherapy and/or inhaled meds until the infection passes. If it is minor cold, not requiring antibiotics, make sure to drink lots of fluids and get plenty of rest to allow your body to fight off the infection. Listen to your body and if you have any doubts at all make an appointment with your family doctor or CF clinic. Of course always practice proper hygiene such as washing your hands, trying not to touch your face and stay away from people who are sick. It may mean you have to miss out on seeing your friends, or an event you really wanted to attend, but your health is very important and these everyday measures will help to keep you healthy!
Brenda: Going to a hospital with no CF clinic is not out of the question as most General practitioners may have a basic knowledge of CF. Having said that, the level of care you will receive at a CF Clinic is very different and highly specialised. In Canada CF clinics focus on a team approach to treating their patients. You not only see the physician (or Nurse Clinician), you will also see a dietician, respirologist, and other health professionals take into account your total medical history. You are benefiting from experts who work with CF every day and have the experience to treat and advise you on the many facets of Cystic Fibrosis. I have to travel 2.5 hours to my CF clinic, but they are only a phone call away. For minor issues in between I do see my family doctor who is very familiar with my medical history.
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