Wednesday, April 2, 2014

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


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