Monday, March 31, 2014

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.


  1. Beautifully written Anne! You have provided so much information. A must read by the CF community. I am very proud of both you and John.

    Luv you guys,

  2. Congratulations and thank you for sharing your story. Excited to read more as both of your journeys continue!

    Penny Schirra

  3. Great words of wisdom. I also use Raincow's as my four yr old daughter has cf. I would love a cf mentor.

    1. I'm willing to help whenever you want or need anything at all :)