Monday, March 3, 2014

Response To A Parent Whose Teenager Was Newly Diagnosed With CF

The other day I was told by a parent to a CFer that NOT everyone is as lucky and as healthy as me.  HMMM......Well I can honestly say I would agree with that except I will tell anyone and everyone that sometimes when you battle this disease or anything else 50% of that battle comes from our attitude.  If I let myself feel down or sorry about having CF then I am letting those two letters have the upper hand. 

A good friend gave me the book The Last Lecture by Randy Pausch.  There is a famous quote that came to my mind after I read what this parent told me.  “We cannot change the cards we are dealt, just how we play the hand.”  This is how I view my CF.  I may not have had the best hand in the poker game but I am going to do everything I can to try to win at the game of LIFE!   This is one of the greatest quotes to live by for anyone who believes they got dealt a bad hand!!!
I should let everyone know that my first two paragraphs were not directed at this mom.  The above paragraphs are a different topic but just thought I would mention that. The other day I was Facebook messaged by a parent to a newly diagnosed fibro (male cfer).   She was given my name by another mom to a Cfer who I had talked to almost a year ago.  She let this mom know I would have some encouraging words for her.  I guess that right there tells me what I am doing is really helping this community and people are remembering what I have to say even from a year ago!! WOO HOO!!!

Here is how the conversation went. All names have been removed.

Hello... I was given your name by a mom in cf mommas group. If you are open to it, id like to talk to you about cf, my son and some struggles we are having.

Hi MOM, i believe that lady is named BLANK? She is all the way from australia

I have talked with her a good amount before

I am willing to talk to anyone about CF. So go ahead with your questions

Good morning. Yes it was BLANK. She spoke very highly of you. I had made a post on the cf mommas page asking at what age everyones child was diagnosed. My son just turned 13 last month, and was diagnosed in May. He is really struggling with depression, and "mourning" the life he had. She thought you might have some helpful words


Sorry for the delay in response time. It's been a little busy around here. So your son is just diagnosed with CF? Well I am sorry that you had to hear the words cystic fibrosis. Did you know about CF before your son's diagnosis? I like to ask this because there are so many people who have never heard of cystic fibrosis until a family member is diagnosed or a friend they know has it.
I will tell you that your son is very similar to me. I was NOT diagnosed with CF until I was 12 years old. I will attach my CF diagnosis post from my blog page. My parents always knew something was wrong with my health as I had constant bronchitis and I was very thin. As a toddler, I was tested for CF and PASSED a sweat test. At that time, the doctor just discontinued looking for CF. I went years and years of my life feeling awful coughing my head off at night to no end. I would wake everyone up in the house from all the coughing. Since I never got a full night sleep, I was run down all the time. I was tired at school, I was tired while I played sports, I was just beat down from all the coughing. I never understood why I couldn't gain any weight but if you are tired you do not want to eat right?

My parents were beyond persistent and finally I had two more sweat tests done in 1995 and 1996. Both tests I PASSED. So NO CF!!!! Then finally the allergist said let’s do a cheek swab to get your DNA tested by a lab for CF. The DNA test revealed that I have CF! It was a big shocker to my parents and family. How could I pass sweat tests and have CF. Well I am not the typical CFer. More on that later.

I didn't even know what CF was at the age of 12. I assume your son is/was in that same boat when he heard of his diagnosis.  All I knew was my parents were upset and I guess I looked at this diagnosis as upsetting as well. But what my parents did from then on is they found a great CF care center. I have been going to the same CF dr. for the last 16 years now. I can honestly say that my CF diagnosis was a blessing in disguise.
I say this because my diagnosis finally changed how I actually felt! I assume your son was not healthy or not feeling 100% most of the time? After a few doctor visits we figured out we needed a plan of attack and a treatment plan. I was cultured for lung bacteria and was found to have what I believe pseudomonas at that time. So we treated it with inhaled antibiotics.

I started using the flutter device and then a few years later we added the VEST. I was starting to feel better and I had energy from all the new treatments and the antibiotics. Today’s CF is so much farther ahead than it was for me 16 years ago! Remember that please!!

I didn't really ever think to myself I wish I had my life back before CF. I actually wish I was diagnosed way earlier in life. This way I could have started to feel better with all the treatments, pills, inhaled meds, etc.

It is tough though at your son's age of 13. He wants to feel like he is "normal" and now having a diagnosis on him may make him feel different. In reality he may not even feel like nothing is wrong with me. Why do I need to do all this treatment, pills, nebs, dr visits, hospitals etc. How was your son feeling in the years leading up to his diagnosis? Maybe you can reassure him now since we have this CF diagnosis we will make you feel better. What does he know about CF?  In my day in age I didn’t have the interent to Google all the scary and sad stories about CF.  I am so THANKFUL that I didn’t have that opportunity nor did my parents : ) There is definitely a lot of stuff out there that can scare a child or young teen. I honestly would stay away from all the dr. google stuff. There is way more good to come from this disease.

I can tell you that I wouldn't be the person I am today without having CF in my life. My entire life perspective is totally different than most people who are 28 years old. I find that I embrace not only my life but my CF life. There is a reason why I have this disease. I may not know the full extent of why I have it but it has lead me to meet some fantastic people who are just like yourself and your son. My passion and love for connecting with people in this community is because of a disease. I have tried to put my life center stage for people like you and your son to see that having CF is just a "diagnosis". I really mean that. It is not a disease that will tell you how you have to live your life because I can tell you after my diagnosis I was still doing the same things I was before. I continued to go to school, be active in sports, play with my friends and everything else through my life I did because I was John and I was not a disease.

What did change is I felt BETTER health wise. Yes, I had to put on a vest, go to the doctor, get antibiotics, etc. But without all those things I wouldn't be able to feel BETTER and live the life I currently do today. I tell many people that CF is just a long for the ride of my life. I will continue to pursue my dreams every day.

I am living proof and there are many others out there who live a "normal" life with CF. I graduated high school, I graduated college, I married my high school sweetheart, we have a miracle daughter, I own a home, I work full time, I do house chores, I get upset, I get mad, I have fun, I laugh, I love to be around people, oh and I have CF. So what I am trying to preach here is that CF is just another part of my life and honestly it has made me a BETTER person because of it.

Your son will go on to do great things in life. He will have the opportunities that many kids do. CF will not limit his ability to pursue his goals in life. But I can tell you the way he gets there is by being dedicated to his health and you have to set the foundation for him by telling him his health is #1.  Everything else falls behind it.

Also, he will view his CF as you view his diagnosis. I know at first this is all new and hard to even understand but I can tell you it will get better with time. You will all develop a routine from this and it will be like getting in the car and putting your seat belt on. It  maybe a little more challenging.

I hope this message helps and I want to answer any questions you may have. I will attach a few posts I think you should read.

Take Care


As Randy Pausch said“We cannot change the cards we are dealt, just how we play the hand.” Even the person who has the best hand at the table can lose the game if they do not play the hand well.  This is just like the game of life.  There are so many people who have a great hand but squander it because of their decisions, actions, and lastly ATTITUDE toward life.    

Anything else we can share with this newly diagnosed parent to a teenage Cfer?  I know she will be reading the responses!

Thank you!

1 comment:

  1. I love you John and how you look at life. You are the best husband anyone can ask for! For all the parents out there, John is the sane one in the family even though he has cf! When i am scared for his health and my daughters, he reminds me to take a step back and relax because life is amazing and as a family we will get through anything. When i found out John had cf my only goal in life was to make him happy and live an amazing life by making all his dreams come true while holding his hand. For all those parents out there, John is truly an inspiration because he always holds his head up high and always thinks positive not only for himself but for our daughter, my self and for all you amazing people who are diagnosed with cf. Listen to his words of advise, do not let cf define who you are because you are how you live your life each day. Love too all.