Losing a good friend to the good fight.

Usually, when a friend of mine dies from CF and its complications, I am sad but am not shocked. Nor does it take me long to accept this. Same goes for losing a friend to complications post-lung transplant. But there are exceptions. And they are never easy. Continue reading Losing a good friend to the good fight.

An Open Invitation For Submissions Of Original Written Works

A book of original poems, quotes, anecdotes and stories penned by those living with Cystic Fibrosis, those who have succumbed to the disease, and those who share and have shared their lives with those who have Cystic Fibrosis. We are accepting original written work to be included in this book. Continue reading An Open Invitation For Submissions Of Original Written Works

Using Reiki with CF and Lung Transplant

I have always complemented my doctors’ prescribed therapies with alternative or complementary care therapies like acupuncture, cranio-sacral therapy, and now reiki. I had received reiki from Michael, at my acupuncturist’s office. Continue reading Using Reiki with CF and Lung Transplant

Boomer Esiason Academic Scholarship

December 15 Deadline Approaching for BEF Academic Scholarship
The Boomer Esiason Foundation encourages college students with cystic fibrosis to get started on their application for the BEF General Academic Scholarship. The next application deadline for this program is December 15, 2011.

The Boomer Esiason Foundation’s General Academic Scholarships assist CF patients pursuing undergraduate and graduate degrees. Grants are awarded quarterly on the basis of demonstrated need and academic accomplishment. They are made directly to the academic institution to assist in covering the cost of tuition and fees. This scholarship is for one year only.
For more information and application materials, please visit the BEF General Academic Scholarship page on our website.

The Boomer Esiason Foundation awards more than $250,000 in scholarships each year to outstanding students with CF who strive both for therapy compliance and for academic success.
For more information about our scholarship program, including applications and 2012 deadlines, please visit the scholarships page on the BEF website. http://esiason.org

If I only knew…

…That I would still be alive at 46 years of age, I might have pushed to do more to further my education. I might have become a veterinarian as I had dreams of becoming as a child. Or, maybe I would have gone back to school to get a masters in social work degree. But we don’t have a crystal ball that we look into to know our lifespans. After being diagnosed at 9 months of age, my parents were told I would live until 6, if they were lucky.

Growing up, CF was always a “childhood” disease. I was usually the median age throughout my life until I was 32. Then I out-grew it and was over the median age. I still always felt that somehow, CF was going to kill me. No longer a child but too sick to go back to college for another degree, I did what I could top survive until a bilateral lung transplant. Now I am almost 47. I wish that I was encouraged to do more, that I was told I was going to live longer. Obviously, in my 30s, it was no longer a childhood disease–for me at least. For some, it still was.

How did others feel about growing up with uncertainty? How do you feel now that you are an adult? Would you change anything?

Cuckoo for coconut water

Coconut water has saved me from being dehydrated–many times. Not coconut milk or juice, coconut water. It is the reconstituted water inside the coconut. It contains a large quantity of potassium. This keeps one’s body from having hyponatremia–low sodium. Therefore, from getting dehydrated. By drinking coconut water before exercising, especially in the summer when one tends to sweat more, you keep in the electrolytes instead of sweating them all out.

As a person with CF and a bilateral lung transplant, I tend to sweat a lot and lose salt through that sweat. After playing tennis outdoors, I will have a white residue on my arms and legs which is granules of my salty sweat. It feels like sand. After doing an activity outside in the heat, I used to get hyponatremia and become nauseous, dizzy, anxious and lose my appetite. And eventually, I would have to be hospitalized for IV hydration. It wasn’t due to not drinking enough water or fluids, for me, it was drinking too much. I generally try to drink over 64 oz. of fluids, mostly water to flush out all the toxic drugs I take like, prednisone, cyclosporine, blood pressure medications, insulin, etc. But by drinking so much water, and sweating, my sodium levels would bottom out and I would need to replace all that sodium. But once I got to a certain level, nothing helped but getting an IV with saline  and sometimes adding magnesium and calcium. This entailed being hospitalized or spending about 5 hours at the infusion suite at my hospital on an out-patient basis.

My doctors were stumped. Then a friend of mine turned me on to coconut water. She told me it was a natural sports drink. I had been drinking those sugary sports drinks like Gatoraide and Vitamin Water as they contained some electrolytes. They are really not made for those with CF who sweat like I did and didn’t help much. Plus, my sugars went sky-high. Once I tried coconut water, which has only about 15 grams of carbs, I was ecstatic. It did not raise my glucose level substancially, especially if I was exercising, and I didn’t start to feel dehydrated.

I recommend coconut water to anyone with CF who sweats a lot  and starts to feel feel ill from the heat or sun. There are a few brands that I have seen, here are a few: O.N.E., Vita Coco, Zico, etc. Most health food stores and supermarkets carry at least one brand in their juice and soda isle. Make sure it is pure coconut water, not juice or milk. I even drink this “water” when I get a stomach flu or diarrhea. Coconut water helps keeps my electrolytes from being depleted.

Try it, you may like it. Enjoy your summer being active outdoors. I do now.

Change: Love it or hate it, it happens…

There is a saying, “the only thing that is constant in life is change,” and boy do I know it.

Before we dive head first into the topic of change, let me introduce myself.  My name is Maggie and I am 23 years old living with cf.  I was diagnosed at 13 months of age with all the normal symptoms of cf.

My life, I think, has taken the normal course.  I dealt with cf as a kid while going to school, playing with my friends, and doing things that most normal kids and adults do with the added hospital stays and breathing treatments.  I went to college and graduated and now have a job in a hospital foundation.  Up until recently I thought I knew my world and knew how my world was going to play out.  No one has a crystal ball and I am not the exception to that either, but I just thought I had it figured out.

I was convinced I would not finish college and would be listed for a transplant in the middle of my college career.  As I look back I am still not sure why I was convinced of this.  In my mind, my life was supposed to stop after college.  I didn’t see a future.  It sounds depressing to type that out, but to me that was not depressing, but just a fact I came to terms with.  I got to my senior year of college and started to realize I was not close to a transplant and I was definitely going to graduate.  This was when the panic started to set in.  Change was coming, I was 4 months away from graduating and had no idea what I was going to do.  I was taking a final class to wrap up the ideas and philosophies we learned in our 4 years at DePaul University.  Our professor gave us a book to read, the Quarter Life Crisis, and as I was turning the pages I realized that is exactly what I was going through. It felt like I was stuck and I couldn’t turn back to the days of the dorm and I couldn’t move forward because I was scared and had no idea what life had in store for me.  I had no future goals in mind and realized I need to come up with some quickly.

Graduation came and went and that was the beginning of my life changing at a rapid pace.  A few months after leaving college I was also aware I had to transition my cf care to the adult team.  Realizing I was living and did have a future was enough change, but transitioning my care was a whole new level of change and I was definitely not prepared to take that on.

For me, transition was one of the hardest things I had to go through.  I sit here seven months later still dealing with this change.  I was very close to my pediatric team and I am bitter and angry that I had to make this big step forward.

Change had only just begun at this point and I was in for some more.  My boyfriend of almost two years asked me to marry him over Christmas of this last year.  This was good change, but at the same time I was thinking in my head, this cannot be happening to me, the girl who was convinced her life was over after college.  Once we got engaged, we planned to move to a new apartment and start fresh with all new furnishings.  At the same time I was just starting my new job at Children’s Memorial Hospital Foundation.  All of this was coming at me while I was still wondering how I graduated and transitioned to adult care.  These last few months have been a whirl wind for me.  The change in never ending good or bad.

This last year has given me so much to think about and to realize I have so much life left in me and I have so much to look forward to in the coming years.  I definitely was thrown for a loop when I realized I was living, and in a big way.

I am marrying my prince charming in just a few months time and I feel like I am just now learning how to live.  Everything seemed to be planned for me in the past and now I have to decide how I want to plan and live in my future.  I have been scared, angry, bitter, happy, and almost sad for realizing I didn’t plan for my future, but the life I am living at this moment is better than something I could have ever dreamt of.  None of us have a crystal ball telling us what we will do or be in the future, but we can dream and set goals for what we want to happen and not let our disease keep us from doing what we want to do in our lives.  I am still learning what it means to live as a person with a disease and not a person who is a disease.  I still have a long way to go and lots of change along the way, but I know now that change is inevitable and that we have to go where it takes us because change is not always bad and can always be enlightening.


My donor’s lungs make the impossible possible!

My donor’s lungs are earning their keep. I had been getting ready for a 35-mile bike ride to promote organ and tissue donation on the North Fork on LI. Biking here and there for up to 20 miles previous to last Sunday’s ride (May 22). I was doubtful I could do the whole ride because last year, I only was able to do half–17.5 miles. I had not practiced riding outside then, only at my gym.  I had tennis elbow last year and after going halfway, everything hurt. It was hard for me to admit defeat as I thought hat I could handle it. I only biked at the gym beforehand which is nothing compared to biking outdoors with hills, wind resistance and other people!

Training for this ride meant going on outdoor bike rides instead of just biking at the gym. My first outings biking outdoors in Manhattan were daunting. I felt so out of shape and out of breath. I usually bike about 45 minutes at the gym and am fine.

I started training for this ride about a month ago and between all the rainy weather and me being lazy, I only got out there 6 or 7 times. I went twice around Central park and thought I might die! And so did the the joggers beating me on the uphills, me gasping for breath. But I guess the perseverence paid off.

Why do I write about this? Is it to be self-congratulatory? OK, slightly. But more than that, I want people who have CF who are considering a lung transplantion to realize that the impossible might become reality. Riding a bike outside was not possible any more for me years prior to lung transplant. After getting my lung tx 11 years ago, I was able to bike outdoors, play tennis (had not done since I was in my 20s). After my tx, it was like going from zero to 60 mph instantly.

In the past few years after many sinus infections, my PFTs were starting to head south. I do exercise as much as possible but was not making them go back up. I figured, this might be my new level. But after pushing myself to bike and really exert myself, my PFTs rose 10%. Aside from biking, I was not doing anything so differently. My feeling is, I am glad that  I had the energy and lung power to push myself, even though it was not pleasant at first. Doing the 35-mile bike ride gave me a renewed sense of setting a goal and going for it. Even if I might fail, I will have learned something from it. Luckily, I triumphed this time.

Hoping that all your goals are accomplished.


Annual check up 11 years post-transplant

I am one of CF Roundtable’s new bloggers. My name is Andrea Eisenman and my username is Andreaeyes. I am in the process of learning how to blog so bear with me while fumble a bit.
I just returned from my annual check up with my transplant pulmonologist at NY Presbyterian. Had a CT scan, basic PFT, blood work, echo-cardiogram and my first ever 6-minute walk test. A lot to do for a visit. Thank goodness it is only once a year. The waiting between tests is the killer here. And actually, my previous transplant pulmonologist never had me do these tests so I was leery at first.
Luckily, my test results were all fine, still waiting on my echo. I am just so grateful to be alive after 11 years post-transplant surgery. My PFTs actually increased 10%. So awesome! It helps to keep me motivated. And due to my high-ish creatinine, my cyclosporine was lowered a slight bit. Every little bit helps.
The tests confirmed my belief that I am indeed feeling well, all things considered. Every day is different but all in all, after 11 years, I am feeling well if I eat properly, exercise 5-6 days a week and take a nap daily. It is a true balancing act. Biggest reason why I do not work full-time any more. If I had to work, I could never manage my health properly. There are days I feel I just need to stay at home and rest. By not working, I can listen to my body and not over do it. I am thankful for the ability to care for myself this way and keep busy with my health care. It IS my full-time job. When not consumed by that, I volunteer for Cf Roundtable as editor, art director and webmaster and for NY Organ Donor Network (NYODN) to enlighten people about the importance of organ donation.
When I am not volunteering, I love to cook and hope to share some recipes here. I also love to bike and play tennis when I feel up to it. My husband, mom, good friends and 2 dogs keep me going.