Summer 2000 ~ Newsletter
How To Tell When Your Child Is Sick
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Patient and Parent Perspectives
Being Honest With Myself
by Rhonda Hilliard
Evaluating my symptoms and listening to my body are part of living with CF. In order to manage this illness, I must know and be honest with myself.
Personally, I get worried if I begin to lose energy more easily. Then when I notice more frequent and labored cough producing thicker secretions, I suspect and infection. Sometimes, the color of my fingernails and skin can clue me in as well. Everyone has his or her own warning signs, such as wheezing, fever, or loss of appetite or weight. Parents will soon learn to recognize changes in their child's health, but until then they can tips from their CF center.
So now that I'm aware of my condition? What next? I go to the doctor and into the hospital if necessary, of course! I don't wait too long. Putting it off will only make me worse, requiring longer treatment and causing permanent lung damage. I've know people that eventually realized the need to nip problems in the bud, but it was usually too late.
Therefore, I encourage everyone to stay on top of his or her condition and not let the infection linger. After all, we want to stay as healthy and feel as good as we can so we can live as much and as long as we can!
Am I Getting Sick?
by Cade Hovater
Sometimes it can be hard to tell whether you or your child with CF is sick. The child may be saying on thing, but your instincts are telling you something different. Parents, I can tell you this first hand because I am a teen with CF.
There are many signs that you child may be sick, and I'll describe them from a kid's point of view. First of all there is increased cough. This can be deceiving, though, sometimes we may just be coughing from things in the environment, but it also could be from being sick.
Another way to tell is the content of the cough. When I get sick, I cough up more mucus and it is usually a different color. Tiredness is a good sign if your child is active. I'm fairly active. But I can usually tell when I'm sick because I will get sleepy very easily and not really feel like doing anything. An finally shortness of breath can be a sign. If you child gets short of breath from doing simple tasks, they may be sick. I usually gauge if I'm sick or not by combining these factors and figuring out how limited I am in doing things now that I usually do.
Having to come in the hospital and being away from your friends and life for 2 weeks is not easy. It makes you get very frustrated. We miss our own bed, TV, friends, pets, and many other things. But there are always ways to get around this. You could let your child bring their own blanket from their own bed, video games, CD's, posters, just things to make their room feel more at home. I usually bring video games and CD's to pass the time.
One final thing that could be causing sickness is sinus problems. These can be very frustrating. Sinus problems cause coughing, infections, sinus headaches, sore throats, and lots of other aggravating symptoms. Sinus surgery can fix this and is one of the easiest surgeries to have. No surgery is easy, but this is pretty mild. I know from experience because I have had multiple sinus surgeries. After the surgery you do nasal washing to keep your sinuses in check. It is important to tell your child with CF to tell you when they think they might be sick, because the longer they wait, the more damage that occurs.
Red Flags To Getting Sick
by Christopher Brown
I am 36 years old with CF and I recently received a bilateral lung transplant. On April 21st of this year, while at Children's Hospital I was called for my surgery. I was going on my fifth week in the hospital with little or no improvement. In the past I could tell I was in need of a "tune up" when I would get short of breath after walking approximately twenty yards then I would need to rest. My chest would feel heavy, tight and my energy level would drop. At night it was difficult to sleep because my back would be so sore. I would sleeping using two liters of oxygen. I used oxygen during the day, but not as often as I should have.
I know from having CF you can have a bad day from time to time. But sometimes I would wait too long before I would call the hospital and get help. When it takes twenty minutes to get dressed and put on your shoes without losing your breath and the recovery time is longer than usual, it's time to call. Waiting too long was almost my downfall. When you feel your warning signs call or get to the hospital. Use good common sense.
Living longer with CF is made possible greatly due to the advances in research. Still a large part of the equation is the patients responsibility. I wish everyone the best and stay well.
Don't Let Them Fool You
by Anetra Ralls
My name is Anetra and I am a 23-year old African-American with Cystic Fibrosis. I know what it means to be sick because I have been faced with this illness all my life and have had to deal with continual hospitalizations, pills, doctor's visits, and anything else you can name. I know what it is like because I am tired more, have hardly any appetite, and other things that come along with having the disease for a long time.
Now, there comes a time when we all, what you call, slack up, or stop doing what is recommended to help our CF. I remember when I used to not take my medicine, hold back or suppress my cough, and even skip my therapy. I am not really sure why I did these things, but I think I was probably motivated to try to be as normal as possible. Now I have realized that I am normal, and just have this illness that lives inside of me.
As I have become older, I now take care of myself. Don't get me wrong, I still have my moments of slacking up. I just have to remind myself that it is not helping my illness or me. No matter how much I want to stop my daily routine, I just cannot do it because I know it affects my life span. I realize that early detection leaves you with a shorter hospital stay a lot of times and is less stressful on the parents.
I believe when the parents are involved, it helps with the healing process. To me, I think every parent should know the specific signs and symptoms of their child's CF. This is because no matter how old we become, we still rely on you for support and to be involved when they see the child having it really hard. Having a chronic illness is not easy. I know parents can not do it alone and that is where prayer comes in. Once we ask the Lord for strength and guidance for everything, He gives us direction and a peace.
I want to take this time to say thank you for reading this. I wanted to share my illness with the rest of the world to let everyone know that it is hard living with CF. I must say that I am blessed for still being able to live like I am although I know one can never tell what tomorrow may bring. Live each day to the fullest. If you have any questions, feel free to email me at ARalls4104@aol.com. I would love to hear from you.
Being A Stronger and Wiser Parent
by Diane Appell
Let me first start by saying time and experience in any situation makes you grow stronger and wiser. I have learned a lot since my daughter, Sheena, was diagnosed with Cystic Fibrosis one month before her third birthday. It's hard, but you have to learn to deal with the shock and what the future could hold. You learn to handle each crisis as it arises. Since Sheena was diagnosed, I have treated her in a normal fashion. I have let her grow to become the young lady she is today. There is a fine line when it comes to her health and getting sick. I must understand as a parent that if I am doing all physically possible to help her stay well. I also must understand the disease can take over at any time.
I have learned the little signs that Sheena might be getting sick due to Cystic Fibrosis. She is so outgoing and enjoys life so much, that alone makes it easier to know when she is sick. Also, a lot of these signs come from me understanding my daughter and spending time with her. We have a very good and open relationship. Don't get me wrong, we have our differences, which explains her growing up like any other teenager.
I guess the best advice I can offer to any parent with a child who has Cystic Fibrosis is to allow them to be their own person, explore all the things that make them happy, including sports, talents and hobbies. These are things that make us all unique and special in our own way. The greatest gift we can give these children who endure so much is our love, support and understanding.
Discovering My Daughter Is Sick
by Tammy Lunsford
My daughter is a teenager and has been coming to Children's Hospital for a number of years now. This has helped me to become well schooled on this subject. I know when she is sick, first by her attitude. She gets ill at others more frequently. What's funny is that even the dogs and cats will make her ill.
There are a lot of other signs of getting sick, like her appetite is down, sitting on the couch all day, coughing more, doesn't sleep well because of her tossing and turning during the night or even using more pillows to breathe better. She may look different in her eyes, like redness or looking like she has a lack of sleep.
She sometimes gets sore and doesn't like to get therapy, which is a big problem because she needs it more than ever. She goes to bed really early and sometimes wakes up from coughing. The coughing can even make her sick. Each child will have different signs and symptoms of getting sick, and the parent will quickly discover when the child is sick.
The hard part is going to the hospital, but that to will have to be discovered as a necessary part of the treatment to stay healthy longer. It can be very stressful and inconvenient to be in the hospital all the time like we have been, but after a while, you will learn to deal with it.