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.

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

Hi,
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.