Wednesday, March 30, 2011

The Truth About CF and Having Children

I started this blog to share information about my life with Cystic Fibrosis.  I have tried to be as honest as I can with every aspect of the disease and how it affects my life.  This blog has really been a place for me to reflect on my disease, in addition to sharing information with others.  There has been one topic, however, that has previously been off-limits: having children.  I was never really comfortable discussing the topic out here in the open.  But, I have decided to take the step forward to share the whole truth about my life with CF. 

Having CF and making a decision about having children is complicated.  I have so much more to consider than the average person.  Pregnancy can cause complications with CF, including increased infections during pregnancy.  The options for treatment are limited while pregnant. Am I willing to risk not being treated for an infection while pregnant? Am I willing to risk the long-term consequences this will have on my lungs? Am I willing to pass this gene on to my offspring? Am I willing to risk having an child with CF?  Once the child is born, will I be able to continue all of my treatments, including exercise, while taking care of a baby?  At what point will I be to sick to care of a child? Its a lot to take on. 

On top of all of this, CF can cause complications with being able to conceive.  So, even if I could find answers to all of the questions above and feel completely confident about having a baby, CF may have the final say.  Which I have learned to be true for me.  The honest truth, I cannot have children because of this disease. 

There are a lot of options out there for women and men with CF who want to have children.  There are various forms of fertility treatments and options that have helped a lot of CF women or CF wives conceive children and have successful pregnancies.  Ethan and I discussed every option under the sun.  Fertility treatments are not the right fit for us. 

But not hope is lost.  Yes, I have officially declared I cannot have children naturally.  I am comfortable with this.  And honestly, it feels good just to admit it and move on.  There is no more disappointment.  The good news is, Ethan and I have decided to pursue adoption.  We are in the very early stages and it will be a very long road, but we are excited at the opportunity to become parents.  Our wish right now is for a toddler in need of a good, safe and loving home. 

I am not planning on writing much about our adoption journey on this blog.  In the future I may decided to e-mail interested friends and family updates from time to time.  But for right now, we are just going through the application, interviews, home study, and a class.  We won't be approved for adoption until the later part of the year.  So until then, there won't be that much to update. 

Monday, March 28, 2011

Cystic Fibrosis Lifestyle Foundation

I recently learned about another non-profit in support of the CF comminuty, the Cystic Fibrosis Lifestyle Foundation. This group is centered around keeping people with Cystic Fibosis active.  They promote the importance of exercise for those with CF, along with providing education resources to keep people with CF educated on the disease.  The CFLF also has a grant to help provide financial assistance towards participating in recreational activities.  They will award up to $500 to apply to costs associated with exercise and staying active.  Visit for more information. 

Saturday, March 26, 2011

New CF Resources

I am the type of person that needs to know ALL of my options before making a decision.  If I need scrapbook paper, I have to look at every single piece for sale before I pick the right piece for my project.  If I need new shoes, I have to look at every pair...sometimes in several different stores...before making a decision.  If we are trying to find a place to eat, I need to know every restaurant in the area before selecting a dining option (even when I am really hungry).  It's the same with CF.  I want to know about every treatment, medication, non-profit organization, book, fundraiser, forum, and website related to CF.  I just want all of the information available so I can:

 1. Be super educated on the disease and
 2. Know what is available to make good decisions about my health.

I just want to know all of my options.

Recently, I discovered a few new resources for people with CF.  My first reaction: how did I not know about these options before!?  Why didn't my doctors talk to me about this!? What else is out there that I don't know about!?  Just in case there is anyone else out there wanting to know all the options or to just be better educated, here are some of my discoveries.

1. First there is Quick Clean Micro-Stream Bags by Medela.  These bags are designed for cleaning breatspumps for nursing mothers.  But these also work great for disinfecting  nebulizer cups.  Pop your disassembled cup in the bag, along with 2 oz. of water and microwave for 3 minutes. Super easy and the bag can be reused up to 20 times.

2. Vitamins specifically for people with CF, by Source CF.  This is a multivitamin with high doses of A, B, D, E and K.  Now I am sure most doctors don't promote this vitamin because any regular multivitamin is beneficial.  I love these vitamins, however,  because they are soft gels and easier to swallow then the regular vitamins.  This is big for me.  I have trouble with swallowing those big pills sometimes. 


3. N-acetylcysteine (NAC).  NAC is associated with supporting a health immune system, good lung function, and has anti-inflammation properties.  These is no strong evidence to suggest that people with CF can benefit from NAC.  However, some people with CF take this medication and have shown benefit.  I found a product called PharmaNAC, an effervescent dietary supplement containing NAC.  This is available without a prescription.  I do not take NAC.  But I am going to talk to my doctor about it to see what her opinion is.  

4. I know someone that has a portable nebulizer.  Do I need to say anything else about how awesome it would be to own a portable nebulizer? 

***I am not a doctor, nor am I trained in the medical field in any way.  I am just one person with CF who wants to be educated and share information.  I am not suggesting or recommending any of these products.  Only your doctor can do that.***

Tuesday, March 22, 2011

Rock CF: I Out Walk CF

On March 20th Ethan and I participated in the virtual race in support of Rock CF.  Our original plan was to walk across the Golden Gate Bridge, but we had to cancel those plans due to a big storm in the San Francisco Bay Area that day.  Instead we stayed dry by using the treadmills in our gym.  Not the most exciting place to walk a 5k, but at least we were still able to participate. 

The Stats:

I have declared in previous blogs that I am not a runner and I will never be a runner.  So for this "run" I walked.  I completed a 5k in about 46 minutes, taking 5565 steps.  This is about my average time to walk a 5k. 

The Pictures:

From Mar 22, 2011

From Drop Box

Thank you to Emily Schaller for making this such a successful event! And thank you to the Sharp's over at CysticLife for supporting this event and getting the word around to our community. 

Thursday, March 17, 2011

Great Strides- Hunt for a Cure

Yes, it is that time of year again...Great Strides.  This is a huge fundraiser for the Cystic Fibrosis Foundation.  This year our local walk is taking place on April 30th around Spring Lake in Santa Rosa, California.  I have started the fundraising process.  It is always amazing to see the support and love of my family and friends. 

This year, Ethan and I are trying to come up with fundraising ideas, instead of just asking for cash donations.  We set up a dine and donate type fundraiser with our local Chevy's, in which Chevy's will donate 25% of all sales from our group to our walk.  We are also putting together a raffle.  Happy fundraising to all of my CF blogger friends also participating in Great Strides. 

Saturday, March 12, 2011

Experiencing a Pulmonary Exacerbation

Starting February 26, Ethan and I went on an 8 day vacation.  We spent four days in Disneyland and another four days in the Phoenix area for our annual Spring Training Trip.  Disneyland was non-stop.  We walked all day and didn't stop until late in the evenings. I was tired by the end of the day, but that is expected with exerting all that energy.  But by the forth day, I was just purely exhausted.  I was walking slower and just really did not want to do much in the park any more.  I took a lot of the day to just sit and enjoy the environment.  But I was so tired, I thought for sure I was getting sick.

By the time we got to Phoenix, I felt horrible.  I thought getting a good night sleep would help, but it really did not.  Soon, I started having a heavy feeling in my chest, with a shortness of breath.  I could tell me lungs were getting "junky."  Soon, I started coughing more than normal and I was still completely wiped matter how much sleep I got.  Disappointment was setting in that I picked up a cold while on vacation.

After returning home, my coughing continued, but I saw slight improvement with using my Vest again.  I continued to be tired and had a decrease in appetite.  I notified my doctor and soon started a course of stand-by Cipro.  The Cipro has really helped, as I feel my lungs are lighter and  not so clogged up, although I am still coughing.

During all of this, I made the hard realization that I did not catch a cold.  I experienced a CF related pulmonary exacerbation.  Usually, my CF symptoms are trigger by catching a cold.  But this was different.  I had no other cold symptoms...only CF related symptoms.  This may have been one of the first exacerbations not brought on by a cold.  This is hard to face...did I run myself down by doing too much at Disneyland?  Did I put my body through too much?  I have always been able to just go, go, go.  CF has presented complications in my life before, but for the most part I have always been able to push through, coming out fine in the end.  Living the most normal life I can.  But this is different. This stopped me in my tracks. Is my limit changing? How do I avoid this in the future? Is this a sign that CF will take over my life? Do I just need to be more careful?

 It is hard facing my own immortality.

Wednesday, March 9, 2011

Work Out Wednesday-Taking Steps

Last week, Ethan and I spent four days in Disneyland! During the entire visit, I wore my pedometer. Dorky, I know, but it was fun to see how much walking we actually did while there.  Here are the numbers, by day:

Day 1: 26547 steps
Day 2: 19565 steps
Day 3: 15386 steps
Day 4: 15691 steps

A total of 77,189 steps.  You walk about a mile for every 2,000 steps. So in four days we walked close to 40 miles.  For comparison, I walk about 4,000 steps on an average day, not including any steps taken while exercising.  No wonder we are hungry the whole time at Disneyland...think of all the calories we must be burning!