CF Community Interview - Megan Lee Mobley (Cyster)

In this interview,  you will read how Megan still would choose to have CF even after going through her double lung transplant.  Just by reading Megan's answers I can tell you that CF does NOT define who this woman is!!  She has some great advice for both sides of a relationship when you start dating a CFer.  I love the perspective that she puts forth in that answer. 

I truly wish there were more people like Megan who reach out to other newly diagnosed parents.   Megan states in her interview she has made a true friend in a parent to a CFer.  I LOVE this.  As many of you know I really enjoy talking with parents to CFers.  I guarantee that when you talk with a parent to a CFer they are so rewarded from that conversation.  I can bet that my parents probably wish they had a sounding board to go to minus the doctors who actually has been through this disease.  The time is NOW to reach out to parents with CFers!!! 

Lastly, I think Megan's advice for all of us who are battling CF are words we should all make a part of our daily life. One thing that jumps out at me is where she makes a statement that MENTALITY is key in fighting this disease! I couldn't agree more.   

Here is Megan's interview and story! 



Name: Megan Lee Mobley (cyster & double lung transplant warrior)

Age: 26

Please share your cystic fibrosis diagnosis (Incude age, how you felt at the time of diagnosis, how was life before and after diagnosis)?

When I was diagnosed I was 5 years old, and what did CF mean to a 5 year old? All I remember was seeing my mother and father cry and the drs running a lot of sweat tests on me.  My life before diagnosis I was always at urgent care, after being diagnosed it was breathing treatments, hospital stays and home IVs.  I didn’t really feel any different, just that I didn’t understand why I was the one out of all my friends that had to go through it.

What has been the biggest challenge for you dealing with cystic fibrosis?

The biggest challenge was staying on top of  my treatments when I became older, because becoming older that meant getting a job, juggling medications, and hospital stays. I lost a job over it.  Also breathing became a challenge around the age of 19, which now I am almost 27.

Please share with us any triumphs you have accomplished because of cystic fibrosis?

I always barrel raced even as a young child, I had to stop for a while until after my transplant but im right back at it.  Getting a lung transplant is a huge triumph, I was also awarded hero of hope through genetic J

Now that we know you have had a lung transplant, how did you view the world before transplant and after transplant?

My quality of life was not good 4 years before my transplant with a lung function of only 28%  I viewed the world the same as I do now, I just have more faith, and more faith in the doctors that treat me, I always said I never wanted a lung transplant, but when you are knocking on deaths door, you re think a lot of things, you do it for the people you love more so than yourself.

What advice would you give anyone who is on the lung transplant list?

Keep your faith, and stay strong, your body can be so weak and they look at you and think you will not make it but its your will, it has to be strong, you have to fight and never give up…no matter how hard you think it is, there are people put there that may have a rougher time. Work out, stay on your oxygen, don’t be afraid, take and do all of your meds!

Were there things you wished your parents did differently as you grew up with cystic fibrosis  (Example: more freedom to be in charge of your treatment, speaking at doctor visits,  life pre diagnosis/post diagnosis, not allowing you to do certain things because of CF)?

My parents were great! I lived a normal childhood when I wasn't sick, and learning from my parents is what made me so strong, they would always reassure me no matter how I was feeling…they treated me normal not like I had a life threatening disease, but they always made sure I did all of my treatments and dressed according to the weather outside J

Can you describe what it was like in the early days of CF and where we are now and where you think CF is going?

In my early days of CF they hospitalized more, but always gotten to come home with IVs and my mother always ran .There were no chest vests, no flutter valves, no inhalers just breathing treatments, and manual PT which I think is better anyway.  Where we are now I think is great! It gives hope to all the younger generation that may not ever have to have lung transplants because of scarred lungs.  They are making medical advancements every day that we do not even know about J

This question floats around a lot.  If you could be born without cystic fibrosis would you?.  But what has CF taught you?

NO.  I wouldn’t be who I am today without CF I would have the knowledge of a disease that a few people only know about surfacely, they don’t know what CF really is.  I aim to let that be known!  CF has taught me to grow up faster, not take any bull from anyone choose my friends and boyfriends wisely, keep up on my health so I don’t leave the family and friends I love so dearly to soon  I love life, even though its been hard at times, I still wouldn’t trade it, I wouldn’t be me.

I have found that there are a good amount of CFers who are worried to tell their boyfriend/girlfriend they have cystic fibrosis.  As a  CFer  in a committed relationship, what advice would you give to a CFer who is afraid to disclose they have cystic fibrosis?

I ALWAYS told a guy I was talking to about my CF before dating, before I would get hurt, 1) Its not right for them to fall for you and something happens and they had no clue you have CF, and they cant handle it, so they are put in a hard position  2) its not right to fall for them not knowing how they would react the first time you got sick around them.

I have always been upfront even when talking to guys I let it be known, because they should get a fair chance to, but you need to explain your own true definition to them because not all CF is standard text book, so you

must give them the chance to want to be a part of your cf life, its only fair, and if they don’t then, there is someone out there better that will! I know all of this for a fact! J

I talk with a lot of newly diagnosed parents to CFers. Many of these parents feel the world is crashing down on them when they hear the two letters CF.  I want to know what you would tell a newly diagnosed parent to a CFer.

I have been talking to now I call a friend since the day her daughter was diagnosed her daughter is 4 now. The earlier the diagnosis and compliance the better!

I have talked to many CF parents and yes they do feel like their world is crashing down  CF does not have to be terminal, even though the text definition says it is…no it doesn’t have to be…it’s a  hard bumpy road, but you get through those roads, and the CF patient worries about their parents more than the parents, because as a CF patient you know your own body and you have a wonderful support system (hopefully) but you still worry more, or well at least I always did and do, but a lot of children will ask their parents why am I sick and not my sister? That was one of my questions and  another one was why did you and daddy make me sick, because I was explained the two dysfunctional genes that both of my parents had to have to have a CF Child.

What advice would you give anyone who is battling cystic fibrosis today?

I would tell them I know it may not seem fair and it isn't, but it makes you the person you are today, just like cancer its not fair either but there is treatment and you could have a way worse disease than CF.  Stay strong, mentality is KEY in fighting this disease, work out, eat healthy, drink tons of water, exercise, take your medication religiously…sometimes that might not be enough and transplant is involved, but that’s done when only to save your life, give you a better life, if your life with CF has gotten that bad, you still have to exercise, eat properly, drink tons of water take your medications… BE COMPLAINT with whatever the drs tell you, and if you don’t feel like you are getting good enough medical care find a diff CF center.

Thanks,

Megan Lee Mobley, CF&DLTX Patient

John's Notes:

Megan is one courageous cyster that is for sure.  I love how her mindset focused on living not just for herself but for the people who love her when it came time for transplant.  As Megan states that CF has made her grow up faster than most people, I truly believe that statement.  Not very many people understand what that is like unless you live out this disease.  But this makes us all embrace our life that much more.  

I really like Megan's advice when it comes to relationships.  Sometimes with an illness we forget about the other side of the relationship meaning that other person.  We don't know how they will react once we tell them we have a life threatening disease.  As Megan states it's only fair to let them know because we do not want to hurt our self as well as the other person.  It is also good to point out how every CF person is different and we need to share with that person OUR CF story..  

I think Megan nailed it on the head about how a newly diagnosed parent feels and what advice she would give them.  For all the parents out there just remember we worry about our parents and how CF affects you as well.  We were given CF because we are able to fight this and be strong.  

Lastly, I share this same praise as Megan and many others who are a part of the CF community.........THANK YOU to all the organ donors.  You give the gift of a second chance!!! 

Well done Megan! 

CF Community Interview - Brad Johns (Fibro)

In this interview you will read what it's like to be a male CFer.  Brad, truly is a pioneer in our disease.  He was the first male CFer to have a child via IVF in his home state, Mississippi.  When you get to read what he has accomplished in the face of CF it's pretty impressive to me.  Even people without CF would be envious to accomplish as much as he has in his career and family life.  I can tell you that from a few conversations I have had with Brad and after reading his responses to CF he truly doesn't let a single thing stand in the way of his life.  Thanks for being an inspiration to us all Brad.  Enjoy the interview!

Name : Brad Johns   Fibro

Age:  42

Please share your cystic fibrosis diagnosis (Include age, how you felt at the time of diagnosis, how was life before and after diagnosis)?

I was diagnosed at 3 months so I have never known what it was like to be normal.

Once you realized you had cystic fibrosis did you change anything (did your goals change, views on life change, did you avoid certain things)? 

I don’t think I really understood until I was in high school. I just thought that it was part of my life. I wasn’t really sick while I was growing up until I got into high school. I missed over 180 days of school over the 4 years of high school. My senior year I was told I had contracted cepacia pseudomonas. I was the 2^nd person in the state of Mississippi to contract cepacia.  I still have it. Currently, I can’t get rid of it.  But it doesn’t cause me many problems fortunately.  At that time though I remember I was very scared. I had a bunch of doctors come in and talked to me and my family. That had never happened before. They told me that I could not visit any of the other patients and that I would have to wear gown, mask, and gloves if I were to leave my room at all times. It was at that point that my view of life changed forever. Once other CFers found out that I had this stuff they avoided me like the plague. So my life for the most part has been lived in isolation from others with CF. It wasn’t until I started trying to find a way to pay for a doctorate degree that I started seeking out others with CF.

What has been the biggest challenge for you dealing with cystic fibrosis?

I think it is the mind games that this illness can play on you. Knowing that you are eventually going to die from this stuff is a hard pill to swallow. That is why I try to stay on top of things all the time. I have a wife and 3 children. I want to live as long as I can so that I can experience as much as possible with them.

Please share with us any triumphs you have accomplished in the face of cystic fibrosis?

My 3 children (Josh, Justin, and Lyzzie).

Hero of Hope (Genentech Pharmaceuticals)

Star teacher

Teacher of the Year

McLaurin High School Teacher of the Month

Channel 16 (local TV station) Teacher of the Week

Doctorate Degree in Educational Leadership

Appeared on TV and in the newspaper multiple times for CF and non CF related events

Mississippi College Distinguished Alumnus of the Year (2013)

Writing Team of the 2007 Mississippi Mathematics Framework

Mississippi Professional Educators (MPE) board of directors

Mississippi Council of Teachers of Mathematics (MCTM) board of directors

Children’s Minister

Appeared through video at the Mississippi CF education day and spoke about having children through IVF

Outstanding teacher award!!! 

Since you have shared with me that you were able to have children what struggles did you face on this path? 

First the cost is overwhelming. We immediately started trying to have children once we were married through IVF. It was hard to pay for all that this entailed and also pay for my CF needs as well. Second, each time it did not work, the emotions that went along with finding out were really hard. Finally, I don’t think we knew what we were getting ourselves into when we found out we were having twins the second time that it worked. It was and still is hard at times. The first 2 years were the worst. Between taking care of kids and taking care of myself it was exhausting.

How has becoming a father shaped your life? 

I think many people do not understand that being a father and having CF is very tough.  Please share any thoughts you have on this topic. (How is treatment time before and after becoming a father? How did you let your children know about CF? If you had to give advice to any CFer on becoming a parent what would that be?)  It’s still hard at times. Making sure that everybody is taken care of and providing the finances to make sure that they have their needs provided for is hard. CF costs for my family have skyrocketed in the last couple of years. Normal people don’t understand how much our disease cost. The cost of our disease never goes away. We never catch a break from the cost. People with other diseases such as Cancer are never sick until they are diagnosed. My CF costs have always been there and will always be there until I die.

My treatments are very different now as compared to when we did not have children. I have to get up much earlier to start treatments. Treatments start each day for me around 4:15 a.m. each day. I use to be able to do them as late as 5:30 each day before we had kids. That extra hour of lost sleep takes its toll on the CF body. Now that my children are in school we have homework each day which makes the evenings more complicated as well. By the time we do homework, get everyone fed and bathed, its time for bed so there is not much time for anything else.

My oldest has known about my disease for several years. My twins who are 7 know it only in name. When they get to an age where we feel that they are able to understand we will tell them about it just as we did Josh.

If I had to give any advice to those seeking to be parents it would be to find out as much information as you can before starting IVF. When we started trying through IVF 15 years ago now, there was not much information out there. We were pioneers back then. I was the first male in the state of Mississippi with CF to have a child through IVF.

Brad's three children! 

Were there things you wished your parents did differently as you grew up with cystic fibrosis  (Example: more freedom to be in charge of your treatment, speaking at doctor visits,  life pre diagnosis/post diagnosis, not allowing you to do certain things because of CF)? 

No my parents let me lead a normal life. I played football, baseball, and was in the band in High School.

You have seen a lot of things as I call you a CF veteran.  I assume you have seen a lot of changes in the early days of CF and where we are at now.  Can you describe what it was like in the early days of CF and where we are now and where you think CF is going?

I remember my parents putting me on a table laying upside down and pounding on me for what seemed like hours everyday when I was little. I remember my parents putting my pills in a spoonful of applesauce so that I could swallow them.

These days there are so many advances in medications. It takes less time to take these drugs and they are more effective than ever before. I am hoping that during my lifetime we will see a cure for our disease.

This question floats around a lot.  If you could be born without cystic fibrosis would you? What has CF taught you? 

At this time I would have to say no. Having CF has taught me to rely on my Lord and Savior Jesus Christ for everything. He provides everything we need. There is not a day that goes by where I don’t constantly have to say o.k. God how are you going to work this out this time? You have to take care of this. I am putting my trust in you. I am totally dependent on God for everything. He provides for us!

I talk with a lot of newly diagnosed parents to CFers. Many of these parents feel the world is crashing down on them when they hear the two letters CF.  What would you tell  a parent who has a newly diagnosed CFer? 

I would tell them that it is not the death sentence that it use to be. We are able to lead fairly normal lives and are able to accomplish much during our lifetime.

I have found that there are a good amount of CFers who are worried to tell their boyfriend/girlfriend they have cystic fibrosis.  As a CFer who is married what advice would you give to a CFer who is afraid to disclose they have cystic fibrosis in a future relationship?  I think that it is important to be upfront with people. I remember telling my girlfriend (later became my wife) very early in our relationship that I had CF. I thought that if we were going to get married then she needed to know. I didn’t want her to find out and then leave because she could not deal with the situation.

What advice would you give anyone who is battling cystic fibrosis today? 

Never give up and never stop taking care of yourself properly. Always work hard to stay as well as you possibly can.

John's Notes:

I am so glad Brad took the time to give us his perspective when it comes to having CF and also being a parent.  I can tell you from my own experience it is VERY TOUGH!  The biggest part like Brad said is fitting in the time for you and your CF.  Treatment times are all different for me especially on the weekends and evenings.  There is NO schedule when you are a parent for your CF.  You no longer are selfish on you it's on the family now.   That is tough and I know from first hand experience its beyond challenging.   As you read, Brad wakes up extra early not to go fishing or hunting but to make sure he is getting in those needed airway treatments.  That to me is saying a lot about his commitment to his health and family!!! For all those out there that do not have to wake up an extra hour earlier to start their day just imagine this.  This is something that Brad does every day and many of us CFers out there as well.  We do this for more tomorrows with our loved ones.  

When I read Brad's accomplishments I just cannot even think of the right words to say but CONGRATULATIONS!!! Even people without CF will be jealous of you Brad.  I can think of one word that describes you and that is determined.  I bet the students you teach are really benefiting from a wonderful teacher and a spirited person.  Not only are your students benefiting from your determination but I could imagine that your wife and children are witnessing a wonderful human being day in and day out.  

Thanks for sharing your life with us all Brad!! You are a true inspiration to many of us out there battling cystic fibrosis.  I know that if you had to run through a wall for CF you would do that.  I wish you much more success throughout your life Fibro!! 

CF Community Interview - Anne (Cyster) Part 2

All I can say is that the first part of this interview with my CF MENTOR Anne was wonderful. If you missed it click here for PART 1.  You can really see how Anne embraces her second chance at life in part 1.

In part 2, you will read Anne's take on offering advice to CFers who are afraid to discuss CF with their partner, what advice she has for parents to newly diagnosed CFers, and her advice for all of us CFers who are battling this disease.  It's kind of funny reading this as Anne and I see eye to eye on a lot of these topics. In fact, some of you who I interact with will see we even offer some of the same advice!

Here is Anne with part 2 of her AWESOME interview!

***If you could be born without CF--would you?

In a perfect world CF, cancer and so many other diseases wouldn't exist. I recently said to my Mom--"It's good I got CF and not Sue or Kathy." They are my sisters. It's much easier having CF than seeing loved ones suffer.

CF, as most chronic illnesses--has the ability to teach one what really matters in life. Probably much of my growth as an individual has come at the feet of CF. But I'd love to see it eradicated. There are plenty of other ways to learn Life's Lessons.

***As a CF'er in a committed relationship--what can I tell others afraid to discuss CF with a partner?

This is sort of a funny question since at any time of the day or night, if one came to our home, they could hear what sounded like a horse galloping. This was the sound of treatments being done--my Mom's cupped hands striking different positions on the ribcages of my brothers' to help remove mucus from the lungs.

Still, I went through teenage years wanting to fit in, but all things weren't equal! I did aerosols and treatments for an hour before school, and I had to be ready for my treatment when my Mom was! She had 3 people to do before school every day. So as my girlfriends were layering on their bright blue eyeliner and eye shadow and finding the perfect outfit to wear, I was doing treatments. It was totally normal in our house.

My oldest brother, Dave, passed away my freshman year of high school, and they announced his death on the announcements at my high school. From that time on, it was known I shared CF with him and my other brother, Dan. Many people that were my friends knew I had CF before Dave's death, but after his passing, the whole school knew. It removed the pressure of trying to be like everyone else.

Anne and her life partner Joe!

My advice to someone who is afraid to disclose their illness to someone they're dating:

I think we all possess an innate feeling of wanting to be accepted and loved. On your first date when you don't know the person, there's no pressing reason to bring up CF--unless you want to. Possibly it's important to remember, you just have CF. It's a part of your life, and there's so much more that makes you--you.

If one hasn't had to work hard or struggle--whether it's school, or grades, staying healthy or getting a good job, it's possible they can lack depth. Some people aren't cut out for dealing with CF, and that's ok. If you open up to someone and they can't handle it, it's best to know before you're going through a really stressful time with your health. A relationship should enhance your life, not make it more stressful. We all kiss some toads before Prince or Princess Charming appears. Those toads tell you what qualities you value in a relationship.

Many of the fellows I dated helped with my treatments and visited me in the hospital. I can't imagine having CF and trying to hide it--along with my cough. It could only be passed off as a "chest cold," for so long!

***What would I tell a parent of newly diagnosed child?

How you handle your child's illness is how THEY will learn to handle their illness. Though it feels like it's the end of the world, it isn't.

I guess the only proof I have is my parents and the other CF families we've known who have navigated CF and remained sane!

I also understand there are plenty of single-parent households. Obviously that makes it much more difficult raising a child--let alone a child with a serious illness. There's a Social Worker on the CF Team that can help you. You deserve having a safe and unbiased person to vent to. On-line there are also good support groups to connect with other parents going through the same things. Don't close down. It's important to connect with others. You are not alone!

Being a patient in a Pediatric hospital through adulthood--I saw and heard a bit. There are parents who coddle their kids and don't want to "be mean," by making them do their treatments. On what planet is it a loving act to not make your child with CF do their treatments?! It won't give your child the strength of character they'll need later in their life, nor will it ensure the healthiest possible future for them.

Also, some parents keep their child out of school due to germs. Well, germs are everywhere. The air recirculating around your home all winter long is full of germs--no matter how great the filtration system on your furnace. I have heard many explanations from many parents over the years.

They ask me how I've kept a good attitude about CF and life in general. Well, for starters, I hit the Parental Lottery. My parents did not cut us slack on important things--doing our treatments, our schoolwork and helping others. Also, grade school, high school and college played an important role in my life. I still have many friends from 1st grade!

If my child had CF, I'd secure a great CF doctor. One who communicates freely and openly with you and your child--one whom you and your child feel very comfortable talking with. They will be your partner in navigating CF. They have to have time for you and be able to communicate with you in clear and concise terms.

Also, teach your child to speak up and advocate for their needs. Advocating for oneself is a very important element in being a good and well-informed patient. Also, follow your doctor's orders. He or she has M.D. after their name for a reason. That doesn't mean you can't question and challenge them. Nobody is perfect!

Kids take their cues from their parents. If you are overwhelmed and depressed, odds are your child is going is going to handle CF the same way. If you are positive, your child will be, also. If you don't believe me, just spend some time on a Pediatric floor! It's clear that kids take their cues from their parents. Dramatic parents = Dramatic child. Level-headed parents = secure, well-adapted child.

Anne and her nephew!

***How do you protect your child from getting sick?

This is a Catch 22. If a child isn't exposed to germs, he or she cannot build the antibodies needed to fend off those same germs when they come knocking again. Living as a Bubble Boy or Girl isn't the answer to avoiding germs.

Side note--my transplant doctor feels if people could stop touching their faces--we wouldn't get sick! Most germs and viruses are transported from our hands by touching our nose, mouth or eyes.

Take precautions--wash your hands, sanitize them after touching high-bacteria items--doorknobs, car keys, money, an elevator button or high-traffic objects.

Being a post-transplant patient, I wear a mask in what are termed, "Construction Zones." Construction Zones are defined as any place one cannot control the distance from another person. A crowd, an elevator, a basketball game in a full gymnasium, etc. Ironically, people tend to believe a person wearing a mask has a horrible communicable disease! Some ask and I explain the mask is actually to protect me.

Once a person is transplanted, they are immune suppressed for life in order for their body to not to reject the new organs. All those precautions one learns while having CF come in handy post-transplant, also. If a parent is overprotective before transplant, they may go off of the deep end after. Everything in life has a balance.

***Advice for people battling CF today?

1.) Be compliant with your treatments--they are money in the bank later in life.

Listen to your body. If you think something is "off," it very well may be. Call your doctor and explain your symptoms.

2.) LIVE YOUR LIFE. Normalcy is one of the greatest gifts one can have. When you are able to enjoy normal an Indians game, some 4th of July fireworks or even a walk around the block on a sunny day. Maintain as much normalcy as possible, and stockpile these times in your memory. Bring them our when getting through tough times.

3.) Possibly the most important element is exercise. What? You don't have the time?

There was CF doctor who ran the MICU at University Hospitals, taught classes at Case Western, was a husband and a father of 3 girls, he was also an Internist and a Critical Care doctor--so he had all those patients too--on top of his CF patients. Guess what? He trained and ran marathons! Thanks to him, it's impossible for me to say I don't have time to work out!

When one is on the transplant list--they send you to Pulmonary Rehab! So there you are on oxygen and you're exercising. Sure it's difficult, but it helps shorten the recovery time post-transplant--not to mention send you into an intense transplant surgery as strong as you can possibly be. There's a method to their madness!

When I was in college, a friend of our family sent me my first treadmill! I began walking on it...and kept going...until eventually I walked 6-8 miles a day! My health was better, and I recovered much quicker when I had an exacerbation. Exercise works--and you don't have to kill yourself. Try to walk for 15 minutes a day, then slowly build-up.

After transplant, one is required to complete 36 sessions of Pulmonary Rehab. It was grueling! My legs were toothpicks post-transplant, but I had the lung power to breathe further than my little toothpick legs could take me! It was difficult but awesome building myself back up to enjoy the capacity of the new lungs!

Post-transplant, exercise remains an integral part of my life. I still walk on my treadmill and ride an exercise bike. I do push-ups and yoga positions and whatever I feel like on any given day. I stretch out really well, it helps protect me from injuries. Sure there are days I don't feel on top of my game, and I don't beat myself up. I try to take a good walk outdoors with our puppy or even run and play with her inside.

With exercise even small changes help. Take the stairs instead of the elevator if you're able, park farther out when you going to the store--it's liberating not dueling with all the other cars for the closest parking spots!

Also, hydration is important. I won't say how much water I drink per day as it'd cause people to vomit! When I had CF lungs it helped thin out my secretions--long before Pulmozyme came along!

The other side of this is nutrition. Your body is working hard to breathe and fight CF, and you're burning major calories doing so. Fuel your body! Now this is somewhat hypocritical because it wasn't until post-transplant that I started to divorce myself from my junk food diet. I was eating for pure calories and fat pre-transplant--I needed every bit I could get! I was 80 pounds heading into transplant at 5' 5".

Keep in mind, sugar feeds bacteria. With CF and the chronic infections in the lungs, those infections are gaining power from all of the sugar one is consuming. Also, the processed food contain many additives that cause inflammation---also not something a CF'er's body needs.

We all have our own way of dealing with CF, and it's important not to compare yourself to anyone! Medicine works differently for everyone too, as do treatments and even exercise. The key is finding what works for you and following through with it. Surround yourself with positive people, they will lift you up when you feel down, and they will carry you when you can't "walk" any more. If you don't feel better after seeing someone, chances are they're not the most positive force in your life.

Some people are what I call, "Suckers." Not because they're sweet, but because if you allow them, they'll suck the life out of you. You know the type--they always have self-created drama happening to them. These people will exhaust you and steal your energy by engulfing you in their soap-opera life. You're living with CF, that brings enough stress. For the best interest in your health, avoid inheriting more!

Stress causes the body to release a stress hormone called Cortisol. It also causes inflammation and suppresses your immune system. Have you ever caught a cold when you were really stressed? Cortisol can put your body in a weakened state so you can't fight anything off.

Also, get out and help others! It doesn't matter if it's helping an older person load groceries in their car, do something. Not only are you helping people, you are helping yourself.

LIVE and enjoy your life! Laugh often and hard--until tears are flowing down your face! Love openly. Accept defeat and learn as early as possible it's really pretty great being you ;) 

Anne, Joe, and a MASSIVE pizza!

John's Notes:

I don't know where to begin.........Just some really in depth words here and wonderful writing.  You can see that Anne got accustomed to her CF life early on.  I think she hits the nail on the head when she explains that a child will view CF as you the parent view CF.  Hmm, this sounds familiar as I say this to many of you newly diagnosed parents out there.  I love this from Anne, Dramatic parents = Dramatic child. Level-headed parents = secure, well-adapted child.  I couldn't have said it any better Anne.  

There are many people out there who fear germs and Anne really goes into some depth on that topic.  GERMS are everywhere and we all know that.  This is a wonderful quote from Anne,  Side note--my transplant doctor feels if people could stop touching their faces--we wouldn't get sick! Most germs and viruses are transported from our hands by touching our nose, mouth or eyes. I think though at times parents and CFers drive themselves up a pole worried about all kinds of possible bacteria. It's plain and simple, its IMPOSSIBLE to eradicate all bacteria. If we are exposed to germs we build an immune system!   In Anne's words we need to treat CFers just as we treat any other person.  It's part of life and we all need to embrace LIFE! 

1.) Be compliant with your treatments--they are money in the bank later in life.    This is a fantastic quote that I hear every day when I do treatment.  I am putting in the time for more time in the future with my family.  Just remember you are all putting in the time for more tomorrow by being compliant!

2.) LIVE YOUR LIFE.  I like to say CF is along for the ride when it comes to my life.  If we can get to this attitude and thinking we will all be a step ahead in the right direction.  I like to think every time I get out of bed is another gift for me to put another mark on this planet :) 

3.) Possibly the most important element is exercise.  We all know how important it is to exercise CF or not.  But even more so for us CFers.  This is something I am challenged on every day.  I do try to find small ways to put exercise in my hectic life but I am full of excuses which needs to change. 

4.)LIVE and enjoy your life!  Nothing really needs to be said here.  Just go out every day and make it a great day.  No one has a crystal ball.  But at the end of the day, when you put your head on the pillow be thankful that you have had the chance to live out another day :)


I hope that everyone who has read part 1 and part 2 has come away with something from Anne's interview. I wanted all of you to "meet" this special person in my life and I thought that this would be the best way to do that.  We all need to find a CF MENTOR in our life and mine is Anne.  I am so thankful that every week I get to exchange emails and talk about life with my MENTOR.  

Thanks for doing this interview cuz you truly are a class act.  I LOVE ya like a sister or I should say cyster! 

If you are interested in joining me as we bring much needed CF awareness to the public please volunteer for the interview series here. 

  

CF Community Interview - Anne (Cyster) Part 1

We all know that this disease can really be a daunting monster to face.  I am beyond lucky to have a wonderful wife and family who are all my biggest cheerleaders.  Sometimes when we think of family we wonder if anyone has gone through a similar battle as we have.  I have noticed in the CF community that there are some families who have a relative that has/had CF.  In my family, this holds true.  My mother's cousin Anne, has cystic fibrosis.  Anne is my second cousin but I can tell you she is more to me than just a second cousin she is like my long lost sister or I should say cyster.  Anne is also my CF MENTOR!!!!!

As I said above, the world of CF is daunting, unknown, and down right scary at times.  Just like when you start a new job or go to college you want to find someone with some experience to enlighten you on what to expect or to show you around.  The same applies to CF.  We all need to find someone who can be our sounding board as well as talk to us about their experience battling CF.  This person is usually what we call a MENTOR! 

I think we really need to think about this as a CF community.  A CF mentor is someone we all need no matter what age we are. Also, it doesn't matter if we are the CFer, the parent to a CFer, or even the spouse to a CFer.  There is so much to be learned, shared, and gained from sharing our experiences with others in the CF community.  If we all can find a go to person to ask questions to and even share our struggles and accomplishments with I think we all will benefit.

In fact,this is one of the biggest reasons I wanted to do a blogger interview series so many of you could meet my CF MENTOR.  Please welcome my beautiful CF MENTOR and second cousin Anne!


Name: Anne - Cyster and double lung transplant recipient

Age: 43

1 year post transplant!!!

***Please share your CF diagnosis:

My parents had 6 children--3 didn't have CF, and 3 did. One of my sisters is a carrier. I'm the last surviving member of my family with CF, and I'll turn 44 next month.

Around the age of 6 I knew I had, "what my brothers had," just due to living with siblings with CF. I played soccer in elementary school, and recall coughing a bit while running, but it didn't slow me down.

Life didn't change much after being, "officially," diagnosed at age 10. I began seeing the same CF doctor my brothers saw at Rainbow, and I started taking the same meds and doing treatments like them. All of these things seemed normal to me, but I can't imagine how difficult it was for my parents dealing with everything.

Thanks to my brothers, there weren't many unknowns in the World of CF. They were well-informed on new meds coming down the pike for CF, and they helped their little sister--me. All in all we lived our lives like many other families.

We all lucked out having pretty positive attitudes. I attribute that to my Mom. She always would say--"Don't worry about things that haven't happened." I took my cues from her and imitated her actions. She was very low-drama, the sky was never falling--at least on her exterior. My Dad was more nervous, and he worked to support us, while my Mom was our primary care giver. Yes, she is Wonder Woman.

I give huge credit to my parents, they instilled in all of us that we could do anything we wanted with our lives! They didn't treat their CF children any differently than our healthy siblings--at least from our point of view. Sure, some things were different--we weren't allowed out of the house without doing our treatments! But those quickly became as normal to do as brushing one's teeth. They taught us to be responsible and committed to our healthcare.

***What did I learn from my brothers' experiences--did it change the way I view my life?

Growing up in a house with 3 CF'ers probably made me think CF was much more common that it really is. In my family there wasn't a minority of healthy kids to CF kids. I felt gifted having 2 brothers with CF, they always helped me.

We lost my brothers--Dave in 1985 at age 31, and Dan at age 38 in 1999. I felt lucky to have them as long as we did. Thanks to them taking meticulous care of themselves, they lived long and good lives in a time that many with CF didn't. I had every conversation I wanted to have with them--a huge gift.

Dave was an Accountant, married with a son. My brother Dan was an Attorney. Both were extremely bright and quick-witted. They were stable and level-headed--not a dramatic family. We were taught to work hard, respect and help others.

***What has been the biggest challenge for me dealing with CF?

Health insurance. I was a Realtor for years, and no health insurance was made available as we were Independent Contractors. I went onto my husband's policy after graduating from college when we married in 1994. His policy had no restrictions on pre-existing conditions, so I was instantly insured. A huge gift. However years later we divorced, and things became tricky again.

***Please share any triumphs due to CF?

It's living a really good life regardless of the difficult conditions I've encountered. I've had numerous hospital stays as many people with CF do. We began adding up the time I'd been hospitalized, but we stopped counting at 4 years! There were things I missed out on over the years, but all of those hospital stays got me to where I am now....alive!

I've been gifted with friends who have warm hearts. My male life-partner, Joe, is a great person, and we have great people in our lives. Speaking of Joe, he is my rock, my friend and my love. We've walked so many paths together during the 15 years we've known one another. He always brings calm in the worse moments! Life wouldn't be nearly as colorful and fun without him!

**How did you view the world before transplant and after?

People with CF now have the option to receive a lung transplant if they wish to pursue it. When I was born, and in my teen years and into my 20's, people just weren't getting wheeled off for lung transplants. It wasn't mentioned as an end-stage option. With the invention of some of the newer generation Anti-rejection meds, the statistics for survival have increased. I've run into lung transplant patients at Cleveland Clinic 15 plus years from their transplant date. Statistics show about 50% of the transplant patients are alive 5 years after transplant.

So the transplant-less world I grew up in meant keeping myself as healthy as possible. Period. I didn't know realize there'd be a second chance at life. Death is a great motivator for staying as healthy as possible!

Post-transplant--I marveled at modern science and the strength of the Human Spirit. In my Donor family's darkest hour, they decided to donate their loved ones organs. Because of their decision, I'm alive.

There was an organ "drought," for some time when I was waiting for lungs. Things were down to the wire, and I wasn't long for this world. I could see clearly what was important in life at that time. That part of it really is a gift. For me it was the people in my life and the relationships.

And for any workoholic out there--there was not a moment I thought, "Oh, I wish I would've worked more." Also unimportant were worldly possessions. Don Henley from the Eagles may have said it best in one of this songs--"You ain't seen no hearses with luggage racks."

I prepared my will and planned my funeral in the hopes of sparing my loved ones from doing so if the lungs didn't come in time. Also, doing those things gave me some control in a world where I had none. I was so ill, I couldn't even brush my own teeth. I felt like a blob of cells on my hospital bed. I learned what true patience is. I felt horrible about my parents possibly losing their 3rd child to CF, but all I could do was my very best. That's what I did. I lived for many months just doing my breathing treatments and trying to eat.

Joe showed me what love was: He worked all day, drove home, showered, then drove from Akron to Cleveland to visit me each night at the hospital. He did this over many years. Surely, too many, but somehow you make it through. Receiving a lung transplant was Redemption for all of that.

Anyway, the selflessness to donate a loved one's organs at the most difficult time near their death is amazing. I think of my Donor and her family each day.

A simple thing like being able to sing along with a song is a miracle. I thank her and her family, and I feel the very best way to do that is living my life in a way to respect the organs she gave to me. I take optimal care of these lungs. I live life humbled by everything I've experienced thus far.

If it's within your own principles, please become an Organ Donor. Most importantly, let your family know of your wishes to do so.

Thumbs up going into transplant surgery!

***What advice would I give to someone on the lung transplant list?

It isn't easy, but you're much stronger than you know. You CAN do this! The human spirit can soar to heights we never knew it was capable of reaching!

Talk with other transplant patients. Do you want minimal info so you're not scared? I wanted tons of info! It took away some fears for me. The breathless nights waiting for The Call--it felt like I was suffocating. Those were really hard times, but going through them empowered me. Due to CF and a lung transplant, there isn't much that rocks my world anymore :)

All of the difficult times before transplant fade away after a double lung transplant. In my experience, it has been completely worth all I went through to make it to The Other Side. Transplant is truly an Epic Journey.

The Other Side is--Breathing freely and unencumbered by oxygen tanks! The Other Side is getting your laugh back! The Other Side is being able to prepare Thanksgiving dinner for 30 + people 5 months after getting new lungs! The Other Side is seeing your nephew begin kindergarten and another graduate from college! The Other Side is getting a puppy--and walking her all over!

My true happiness comes when I'm giving back to other transplant or CF patients. A post-transplant patient helped my considerably before my transplant. All I wanted to do since then was make it to The Other Side and pay it forward to other patients.

Also, spending time with our friends, family, healthcare workers and the rest of the village that it took to get me to--and through--lung transplant. Joe and I still thank our lucky stars for all of the support. The people at Rainbow became our second family! We spent more time with them than our real families for a long time. The gave us the gift of humor and kept us sane.

It's amazing being well enough to help my 82 year-old parents! They've helped me for so long, it's a gift to help take care of them and take them to doctor appointments. Ya, The Other Side is a really good place :)

  

6 months post transplant - Christmas Eve!

**Were there things I wished your parents did differently when I was growing up in regards to CF?

Of course! I wanted to stay out later in high school! I wanted to do what most teenagers want to do--test my boundaries. My parents kept a good balance in our lives of work and play. Treatments weren't a big deal--more of something that needed to be done--and they always were.

My brothers and I received hand percussion for our postural drainage. So if anyone deserves to complain--it's my Mom! She did ALL of our treatments--that's 2 full treatments on 3 of us each and every day. I don't know how she did it. She also cooked a beautiful meal each night, and we ate as a family at 6:00.

Possibly the fair question is: What did my parents wish I did differently as their child with CF? Possibly it takes getting older to fully appreciate all the sacrifices our parents make for us. I can clearly see all the things my parents did and I'm truly grateful. At this point they're probably sick of me telling them!

***The early days of CF compared to now?

The CF Center at Rainbow in Cleveland was the first CF Center in the United States, and it would become the one all other CF Centers were modeled after. My brothers were there in the early days. Everything was new and the protocol was just getting established, it was an exciting and groundbreaking time in CF.

One difference was with health insurance. No representative from anyone's insurance co. was appearing at the hospital trying to get your doctor to discharge you back then. Sadly, it happens all of the time now.

Also, hospital rules were more relaxed. I can recall being in the hospital with my brother, Dan, and watching fireworks on the 4th of July from the roof of Rainbow! So fun! One would not find an unlocked stairwell to the roof now!

Also, CF patients weren't segregated back then. There were no private rooms and we all had at least one roommate. There was a gal who became a great friend of mine. Our every-6-month-clean-outs were pretty much on the same schedule, so many times we shared a hospital room together. Her name was Pam and she was from Lansing, MI. We were as different as day and night! She wanted to sleep in and I got up at 7:00 A.M. to do my aerosols! No matter what, we really enjoyed one another.

One summer, the nurses allowed Pam and I to sit out on a roof connecting the old Rainbow to another building--it had an outdoor patio area. We put on our bikinis and got our IV meds outside! Yes, things were laid back then.

With the birth of frivolous lawsuits, HIPPA and too many regulations, life as a hospital patient was bound to change. And it did. Cuts in the budgets were able to be noticed in every aspect of hospital care.

At the same time, medicine was progressing by leaps and bounds. CF treatments progressed, and oddly, in some ways it remained the same.

December of 1984 was my first hospital stay at Rainbow. I was a freshman in high school and had caught Mononucleosis. I was an in-patient for over a month, and my brother, Dave, and I shared a hospital room. It was easier for my parents to visit us.

In 2012, 28 years after I'd first been a patient at Rainbow, I had my last hospital stay there. On June 30th, 2012, The Call came that lungs were available! In the middle of the night Joe drove us out of the parking deck at Rainbow, and down the street to get new lungs. I was as excited as a kid going to Disney World!

In retrospect during that last stay at Rainbow, I on many of the same antibiotics that I was on during my first stay in 1984. I did the same treatments, too. Some of the aerosols were new and they'd probably helped me put off lung transplant until age 42.

I witnessed an amazing time in the World of CF. It has come SO far! So many meds have been approved! The Vest and the Flutter and so many other tools came along to help move secretions! Surely, there are more that have come along that I know nothing about. It keeps getting better and better.

How things have changed over the years in CF and medicine could be a book in and of itself. My retired CF doctor, Carl Doershuk, wrote a book about CF from the beginning to around the time he retired in 1997. Amazing seeing it from his eyes. He was there when it all began, he was one of the Pioneers. 

TO BE CONTINUED...............................................................


John's Notes:

I guess it looks like this writing bug is in the family!  All I can think of is just WOW.  Anne's words are beyond powerful.  I can feel this story not just hear it.  It looks like as I have said in many blogs that a CFer will view their CF just as their parents view it.  I know Anne was blessed with a gift to have the parents she does.  Not only the parents she has but seeing her two brothers battle this disease I think really made Anne that much stronger as a person.

If you are not an organ donor and you have read this interview there is NO reason you should not be an organ donor.  What I love from this first part of the interview is you get to Anne appreciating all the graces of life.  Not only is she thankful but she gives back countlessly to the CF community and the organ donation community.  I have referred many people to my cousin just because she is willing to share her life going through transplant.  If anyone wants to talk with her I have her email address and she is willing to offer what advice she has.

Come back later this week to catch part 2 of this AMAZING interview.

If you missed the first interview with Maria my spouse here it is. Maria Interview.

Birthday & The FUTURE POST

This past Sunday I turned 29! So what does that mean to me?  Yes, it’s my last year of my 20s. One thing is for sure, I will not change how I view my life.  I have been blessed with more immaterial and material things than I ever thought I would ever have in my life!  How did I celebrate my birthday?  I celebrated with family as those are the people you can count on the most in your life!!  I am not really big into throwing a huge birthday bash as I am more of a low key person.  Many of you who are my friends on Facebook noticed I did not even put my birthday on Facebook as in what day it is.  I guess I should say that is mainly because I took over Maria’s Facebook account.  In fact, her birthday date is used on Facebook, not mine!  But I am sure a lot of people will still wish me happy birthday on Maria’s birthday.

Today, at work we went out to celebrate my birthday which is a really wonderful gesture from my boss.  I was asked by a co-worker if I celebrated any milestones with my birthday. I should let you know that this co-worker doesn’t know I have CF.  Yes, some people I work with do not know I have CF while others do know I have CF.  Anyway, I replied with this statement. I’m 29 years old now and every year is a milestone in my book!   My co-worker said well that isn’t a milestone.  Yes, I know I am not 16 (driving privileges), I am not 18 (adult and voting), I am not 21 which is beyond overrated (legal drinking age), I am not 30, I am not 40, I am not 50, I am not 60, I am not 65 etc.  You get the point.  But for whatever reason this just rubbed me the wrong way that I was not hitting a milestone with my “new” age.   As I said, every year is a milestone even for those without CF as no single day is guaranteed to anyone.  I have the same chance of not waking up tomorrow just as you do or the same chance of getting hit by a bus.  Ok, I understand I have CF maybe that gray cloud could cover the sun a little more than other people’s cloud but I refuse to be a Debbie downer!

I have not really ever talked about this topic on my blog but I will tell you that it’s a miracle that I am even here today.  So what am I hiding?  Well thankfully, I was way to young to ever remember this and I do not want to over emphasize something that has happened to probably many infants when they first entered the world.   As soon as I came out I did not cry! That meant I wasn’t breathing!! According to my dad, he recalls how blue I was all over my body.  The doctor, the nurses, and the rest of the staff paged the crash cart! I guess just before all the electrical shockers arrived I decided to stop scaring everyone and took my first breaths.  I honestly, have no idea how my parents felt during those few seconds which probably felt like an eternity with me not breathing.   Maybe this was my first sign that I had CF.  To bad it took the doctors and everyone else involved 12 years from that point on to figure out I have CF. 

What is the point of me even sharing what happened today at lunch and what happened to me when I was first born?  I don’t really know but maybe it’s because I just wanted to write about appreciating life and not taking a single day for granted on this planet.  I think sometimes the people who do not have an underlying health condition truly do not embrace the life they have been given.  There are also a good amount of people with an underlying health condition who still do not embrace life!  There are days when I hear/see/read that some people find a negative to focus on in their life.  Maybe we have been trained as a society that negative news sells so lets focus on something negative in our life and beat our self up about how negative our life is.  Or the theory of you only live once. It’s so cliché that people use the “you only live once” excuse about why they don’t take care of themselves.  In my book “you only live once” is more reason than anything to embrace your health and your life.   

As I sit here and think back on my very young life at 29 I am beyond blessed to have hit on so many milestones in my life whether that is an age milestone or another accomplishment.  I have been able to see myself change from a child, to a teenager, to an adult, to a husband, to a father in this short time.  I will say that as I have aged I have grown to appreciate more things in life than I have ever before.  I guess as a child and a teenager you are still trying to figure out the meaning and value in life.  In all reality, sometimes I do have days where I am down about things and they aren’t always tied to CF.  Those things that bring me down some days could be life events, things that occur at work, or just other things that I have no control over.  But I will tell you those days are very few and far between the days where I find many positives in my life.  I never take for granted that I got out of bed today, I get to put on a vest and inhale what seems like the ocean via hypertonic saline before I start my day, I get to put in 8 hours of work 5 days a week to financially help my family, I get to go home to a beautiful wife and miracle daughter who love me more than I could ever put into words, I get to spend quality time with the people I love and who love me for me every day, and I get the opportunity to make memories every day.  You see this is what drives me every single day to put my best foot forward.  I cannot wait to see what my life looks like in a month from now, a year from now, 5 years from now, 10 years from now, 20 years from now, and even 50 years from now.  That’s what keeps my motivation clicking on all cylinders, the FUTURE!!!

I am not only doing what I do every day for my family but I am putting 110% of my effort into life for the people who have lost their battle to CF!   No one knows when their time will be up but I refuse to ever take a single day for granted.  I hope many of you find something positive in your every day life because negativity only brings us down!  

“Yesterday is gone. Tomorrow has not yet come.

We have only today. Let us begin.”

―Mother Teresa