Katey Ballard-CF Warrior-February 4, 1985 to March 9, 2014

I was sad to discover the loss of another CF Warrior this week, Katey Ballard.  I have been following Katey's blog and story since I starting blogging, back in 2009.  Katey lead an amazing life and was a true inspiration to me in so many ways.  She was a double lung transplant recipient, was able to balance obtaining a nursing degree while managing complications with CF, traveled to Africa to help those in need, worked as a nurse, and was highly involved in raising awareness and funds through the Cystic Fibrosis Foundation

Katey was engaged to be married in just 45 days.  While I feel so sad about her death, I feel even more sad she was not able to experience her wedding day.  She was so excited.  All the planning.  Its hard to understand why she was taken so soon.

Katey's number one priority in life was her faith in the Lord.  She was dedicated to the Lord in so many ways. Through her blog, I often found inspiration in her faith in the Lord's plan.  No matter how hard things where in Katey's life, she put all her faith in God.  I know she is in heaven now.  Safe, breathing, with big angel wings.

Katey, you have been a great friend.  Sharing in this disease is sometimes the only way to cope.  Thank you for teaching me to push through, no matter how difficult.  You were so strong, I will continue to grow and learn from your strength.  Loving and missing you.

Katey's blog signature

Inspiration

Inspiration can come up in different ways and sometimes unexpectedly. Living with a chronic illness inspiration is an important part of my life.  Sometimes inspiration comes from other CFers.  Seeing those living with dedication to their health can be uplifting and motivating.  Inspiration can come from a stranger....sometimes just some else at the gym working hard.  Inspiration can come from a quote, a fictitious character or a star athlete.  Today, I found inspiration in an very unexpected person.  Matthew McConaughey

I have never really been a fan of Matthew McConaughey as an actor.  Yes, he has been in some good movies (Magic Mike!) and some really not so great movies (Failure to Launch).  Actually Failure to Launch is probably one of the worst movies ever.  It was bad.  It was so bad it made McConaughy look like a terrible actor.  I did like him in Lincoln Lawyer.  And if I thought really hard, I could probably come up with a few other movies he was ok in.  But just "ok."  So when I heard that McConaughy was nominated for an Oscar, I had a really hard believing he was worthy.  And when I saw that he won, I was a little shocked.  Perhaps not the fairest assessment considering I have not seen Dallas Buyers Club, but I was just stuck on thinking of his previous, less-than-stellar performances.

Then today at the gym I watched his acceptance speech.  It was an instant paradigm shift. In the three minute plus speech, I went from looking at this guy as an actor getting by on his good looks to a man full of courage, wisdom, and inspiration.  A man I can learn something from.  A man who has learned how to make his life meaningful and appreciate what he has been given.  Was his performance worthy of an Oscar?  Who knows...but that has to be one of the best acceptances speeches I have seen.

There have been some great speeches in the line of Academy Award Winners.  Tom Hanks, Sean Penn, and Adrian Brody top my list of favorites.  I am happy to add McConaughy to the list.  These actors have so much more to offer us than a movie or TV show.  They can offer motivation and inspiration to achieve goals, respect others, and maybe most importantly, respect ourselves.

Today is a Gift

Last year I decided to turn my blog to private and take a break from the blogging world all together.  I am now ready to reactivate No Two Snowflakes Are Alike! Reasons for the private setting are in the past and not even worth discussing.  The only thing I can do is move forward.  But I will say this, I missed blogging.  I missed writing.  I missed reading other people's blogs.  But what I have really missed more than anything is the networking with other CFers.  It is time to reestablish my relationships.  I recognize how important CF networking has been for me.  It has helped with my motivation in treatments, exercise, and general compliance.  It is also a coping mechanism.  Meeting others with CF changed my life.  I don't want to lose those relationships.

There is a favorite saying I want to share that helps me just move forward:

Tomorrow is a mystery
Yesterday is history
Today is a gift, that is why it is called the present

All I can do is appreciate today and look forward to tomorrow.

Any new blogs out there I should be following???

Getting Back to Normal

It has been six days since my last antibiotic dose and it seems like I am back to my baseline.  No more headaches, which means my energy level is back up.  I am back to a more regular schedule at the gym.  And back in the pool since being PICC free!  I went to water aerobics today and it felt great to be back in the water.  Most important, my PFTs are back to baseline too.  My FEV one is back to 91%, just where I was in October.  It took a lot of work to get back there and it is going to take a lot of work to stay there.  But seeing a 15% drop in such a short time is enough motivation for me to keep up with all of my meds, treatments, exercise, and remembering to find time to rest.  All that is left is checking in with the doctor to hear his thoughts on the reaction to the medication.

Post IV Update

On February 5th, I started IV antibiotics for the third time in my life.  The treatment helped with my sinus infection and headaches, but not without a few complications along the way.  Initially, my treatment was scheduled for 14 days.  Around day 10 the doctors office checked in with me and I was not feeling any better.  Although the green stuff cleared up from my sinuses, I was still experiencing daily headaches, which were leaving me completely exhausted.  The doctor decided to extend my treatment for 7 more days.  It is hard to face a treatment not working.  

Around day 18 of my treatment, I started to notice that my chest would hurt briefly at the beginning of administering the medication.  This lead to my legs aching and ultimately a fever.  After contacting the doctor, we decided to stop the treatment early.  I was feeling so much better by then, we figured it was not worth the complications to have three more days of antibiotics.  With that my line was pulled on Monday and I have been feeling great ever since.  

But it leaves the question...why the fevers?  This happened to me last time towards the end of the treatment.  For now, I really don't think it is something that warrants worrying, but it does leave a small amount of worry about next time I need IVs. The doctor indicated that I may need to do IVs in the hospital next time to complete the whole treatment under observation.  Hopefully, that day is a long way off.  

CF Clinic Update

When I went into clinic on Friday, I knew I was not feeling my best.  The week before I had food poisoning, which took me nearly three days to recover from.  It left me feeling tired and with no appetite.  Also, during the course of the past couple months my sinuses have been giving me problems on and off.  The last two weeks I have been back to having headaches and pain, which propels an extreme exhaustion.  But through it all, my lungs felt great, so why then did I find myself with a 15% drop in FEV1?  As I stood there facing my lowest PFTs ever, I was determined to blow my normal range.  I tired my hardest and the numbers would not budge.  As I tried to reflect on why the sudden and surprising decrease in lung function.  I realized there were actually a lot of contributing factors:

I have not been implementing my normal exercise routine,
I have not been 100% compliant with treatments, and
Low energy was inhibiting my ability to put forth the maximum effort needed to do the test.

Looking back at these reason, I really should not be surprised by the drop.  Really this is a wake up call.  It is a reminder of how hard I have to work to stay ahead of this disease.  I cannot take my high PFTs for granted.  It is time to get back on track.

But before that, I will be starting IV antibiotics this week.  I go in for the PICC line today.  I really didn't expect IVs walking into clinic, but I know it is really the right course for "maximum medical therapy" as my doc calls it.

Joey Yerves- A CF Warrior, November 1, 1985 - January 29, 2013

I am having a hard time finding the right words to describe my feelings with the passing of Joey, a beautiful soul who lost his life to Cystic Fibrosis yesterday.  I initially made contact with Joey through facebook in 2011. He was waiting for a double lung transplant.  His life was dependent on new lungs.  I felt a natural connection to Joey because at the time he was living in the same city as me.  Within weeks of connecting, Joey received his call for new lungs.  It was a miracle really. Those lungs saved his life.  

Over the past year and a half, I have been able to get to know Joey a little better, mostly through facebook posts.  He was a unique soul. He started his own record label and recording studio DEEP BREATH RECORDS. Joey was an artist creating his own music, a lot based on this experiences with CF.  He loved cars and he had a couple awesome tattoos.  

Joey lost his life due to rejection of his transplanted lungs. I am thankful to have had Joey in my life.  He taught me to stay strong and be a fighter.  Take chances.  Just breathe.  

Love you Joey.  I'll miss you now and always.  

Colleen

CF Clinic Update, Part 1: Bone Density

On October 19th I had my quarterly CF Clinic appointment (which I realize was 2 months ago!).  The visit was considered my annual appointment, which basically translates to the appointment where the doctor orders a whole bunch of routine tests.  The annual appointment requires blood work, glucose tolerance test, and chest x-ray.  Every two years a bone density scan is ordered and this my year to have one.  The nice thing about the annual appointment is I have until the next appointment to get my test completed.  Getting the blood work is usually the most challenging because I have to be fasting and the glucose tolerance takes two hours.  The test includes having a fasting blood draw, drink a yummy sugary drink, wait two hours, have another blood draw.  I still need to do this!

I don't need a chest x-ray this time because I just had one in June with my PICC placement.  I had the bone density scan yesterday, December 17, so now I am just waiting for the results.  I had a little ordeal getting the test scheduled.  I made the appointment during my CF Clinic appointment.  The first available appointment was December 5.  I didn't mind the wait, since my next visit will not be until January.  The day before the appointment, the office called and cancelled because the tech was sick.  Really...and there is no one else to act as a substitute?  Ok, I can be flexible, even though I had to schedule so far out.  Then they told me they would not be able to reschedule me until February.  I told them that was not acceptable to have me wait nearly four months for a five minute test.  They tried to make excuses and tell me I would just have to wait.  I asked to speak to a department head. I just really feel they need to understand they are not meeting the needs of their patients.  I got a call back immediately and they just "happened" to have a cancellation for the following week.  I actually filed a complaint about the process.  I think they really need to  recognize the faults in their department and make corrects to better service the patients.

Treatments

In terms of CF treatments, I have it pretty easy.  I use albuterol, hypertonic saline, and pulmozyme once a day.  A lot of others CFer have much more to do each day.  But, regardless, I have been having trouble with getting all three treatments done.  The main problem is not being able to do HTS and pulmozyme at the same time.  Doctors say these need to be separated because HTS can interfere with the effectiveness of pulmozyme.  Theis means two different trips to the nebulizer.  I'm good with getting in the first treatment, which is always the albuterol and HTS.  But for some reason I am really having problems with pulmozyme.  I think the problem is a combination of forgetfulness and laziness.

I have really tired several ways to try and be more compliant with pulmozyme: setting alarms, designating a specific time, and doing the treatment first thing in the morning.  I have not been successful with any of these strategies.  A couple of weeks ago, I came up with a new solution to help me with being more compliant: I bought a portable nebulizer.  I purchased a DeVilbiss 6910 Series. It has a car adapter, so I can use it while traveling.  So my plan right now is to use pulmozyme on my way to work.  It has been working really well for me so far.




 

Where Have I Been?

I would love to say that I have not been blogging because I have been so busy, I couldn't possibly find the time to write blogs.  I would also love to say that I have not been blogging because I absolutely have nothing to say.  But the truth be told, neither are true.  Since my last blog post in August I have been to Disney World, celebrate and decorated for Halloween, traveled for work, been to CF clinic, has a sinus CT scan, planed a retirement party, and found myself with a cold.  Lot to write about. Although reading this list it may seem like I have been busy, but I have had more down time that usual, especially on the weekends.  I have really taken advantage of this time to do other things besides blog: I started watching Desperate Housewives (!), reading, crafts for the party, and watching movies.  It has felt good to have some time at home without much responsibility. 

But I have missed blogging and want to get back into the routine.  Again, this is really about me keeping track of my CF life and other things in my life, rather than having people read about who I am.  I want to keep up...and there is lots to share. 

Workout Wednesday: Physical Therapy as a Personal Trainer

If anything is consistent in my life it is back problems. Having scoliosis and three fused vertebras, I will always have some degree of back problems. The key is managing my pain. For the most part my biggest tool in the tool box for back pain management is being in the water. Swimming and water aerobics are key. I am usually in the pool twice a week and this really helps keep my back in a comfortable state.

About a year ago my pain shifted from the left side of my back to more of the right side of my hip. I had my hip x-rayed, but everything was found to look normal. This pain is persistent and is at its worse in the mornings. I think the pain becomes worse the longer I am immobile. I decided to head back to my old Physical Therapist to see if he could develop a workout routine for me to address this pain.

I headed into Back to Golf with the expectation that they would put together a general workout routine for me, mostly weight lifting. But they far exceeded my expectations. The PT did a full evaluation and identified the muscles that I was over and under using. He made three specific exercises for me to do every day at home to help activate certain muscles. One of the exercises targeted the EXACT location of my pain. It was such a relief to feel like there could be hope to address this pain.

After working with the PT once a week for four weeks, he developed a program for me to implement one my own, at the gym. The routine combines stretching, back and side lunges, sit-ups, stability ball and the TRX. The TRX is a suspension system that provides resistance. I do push up, pull ups and squats with the TRX. So far I am getting through the routine twice a week. Some days I notice a huge difference and other days I feel about the same as I did when I started. In a couple more weeks I will check in with the PT to make adjustments to the routine. I am hoping to find the right combination to help address this problem.

Here is a picture of the TRX.  This is not me...I don't smile like that when I am exercising.

Workout Wednesday-New Triathlon Workout

I am always looking for creative ways to mix up my workout routine.  About a year ago, I did a triathlon workout in which I completed a triathlon over the course of 6 or 7 days.  This workout was based on completing a specified distance of biking, walking, and swimming and recording the time it took to complete.  Now I am thinking about attempting a triathlon with a different approach. This time I am going to workout for a designated time frame and record the distance. The catch with this challenge is to conduct all three events in one workout.  I am thinking about starting with 20 minutes for each event and working my way up to 30 minutes for each event.  I like the idea of working my way up to a 1.5 hour workout.  It will be fun to record my distance with each workout and set new goal for improvement.  Not sure when I am going to attempt this workout, but  I will be sure to log my progress here on my blog. 

CFRI Conference

Over the weekend I was able to attend the annual Cystic Fibrosis Research Inc conference.  This conference is really geared towards those in the CF community and not the researches/scientists/medical professionals specializing in CF.  It is a great opportunity to learn about new information, get new ideas about care, and networking.  Here are ten things I learned or experienced at the conference.

1. I learned a great deal about the research Vertex has accomplished with developing new medications for those with CF. They continue to research medications that fight the underlying cause of CF, a whole new approach to managing the disease.  Good things continue to be in the works for this, so it was exciting to hear about the continued efforts.

2. Post Traumatic Stress Disorder is a real life condition for those battling CF or any chronic illness.  I was happy to hear about information on this disorder and how to get help.

3. There was a great presentation on managing CF as an adult. A lot of the information provided was really about being organized.  It gave me some new ideas for clinic, including leaving clinic with a written plan for the next three months.  There was a standard form developed by one clinic that had a place to record all the information information at a clinic visit.  I am thinking about developing my own form to use during each visit.

4.  I learned about an inspiring book called The Breathing Room.  It was a book developed by a CF patient that is a collection of pictures, poems, and biographies of numerous CF patients.  You can learn more about the book at http://www.thebreathingroom.org/

5. I met three older CFers at the conference.  They were 59, 65, and 68.  It is hard to find older CFers and it is really interesting to hear their stories.

6. I attended my first CF support group.  This was a very valuable part of the conference to speak with others living with CF. I have often though I could benefit from this type of communication, but I don't really have anything like this in my area.

7.  There is a really cool website call the Clinical and Functional Translation of CFTR.  It is a website in which you can look up for CF mutations and look at statistics about your mutation combination such at average sweat chloride, lung function, pancreatic status and pseudomonas infection rates.   http://www.cftr2.org/


8. I learned about a new resource call CF Roundtable.  This is a publication specially for adults living with CF.  http://www.cfroundtable.com/

9. The networking of a conference like this is has so much value.  I was able to catch up with old friends and meet some new ones too.  It is so helpful to meet people living with CF...it is like an instant bond or connection.  Luckily we have facebook to stay in touch too!

10.  CFRI is an amazing organization. I am thankful for all they do.  The conference is a special and unique experience.  I feel lucky it takes place so close to home.  One of these days I need to make it to the CFRI retreat!

Post IV Antibiotics

My second IV antibiotic experience was very different from the first time.  The first time, I took the opportunity to take a break from all of my other responsibilities and just take the time to heal.  I took a lot of time off of work, stayed home and found ways to settle in and heal.  Everything went smooth and the medication worked well at clearing up my lungs and sinuses.

So this time, now I have some experience, I knew what to expect.  I felt like I could go on with life as normal, but just with a few extra responsibilities during the day.  In reality, these treatments are way more complicated than I acknowledged. Even though I tired working during the treatment, it was very tiring.  It was hard to focus. I also was busy during the treatment.  I traveled to Eureka on work and visited a friend in Brentwood, about an hour and a half from my house.  I made plans to meet up with people after work.  Even though the first time all the relaxing seemed unnecessary, this time, it felt like what I really needed was the down time.

Also during this course of treatment, I had an allergic reaction to one of my meds.  It started with flu-like symptoms on Friday July 6,day 12 of my 15 day treatment.  I only worked for about 3 hours because I felt so tired.  I even felt like I was getting a fever, but had a normal temperature.  Then that evening, I injected my med and I started feeling a weird feeling in my throat, like it was swelling.  After I was done with the med, my throat felt sore.  Maybe it was just a cold?  I went to bed not feeling so great.  Woke up for the next treatment, same thing and now I really did have a fever.  With a PICC line and a fever I became nervous about an infection of the line.  Because it was a Saturday, my options where limited as to who I could talk to.  I decided to go to the ER.

Basically, the ER assured me my line was not infected and directed me to discontinue the medication causing problems.  By the time the last dose was out of my system, I felt like there was never anything wrong.  My PICC line was pulled on July 9 and I have been feeling great.

Next time I am going to find a better balance with taking care of myself, resting, relaxing and balancing appointments.  I don't think I need to shut my self out from the world, but I also can't be traveling around and  being on the go all the time either.

PICC Line Blood Draw

One good thing about having a PICC line is the ability to draw blood straight from the line. While on IV antibiotics I have to have labs drawn three times a week, mostly to keep an eye on kidney function.  It is so much easier to have labs drawn from the line then having to be poked.  Here is a video of blood being drawn from my line this morning.

Day 5- IV Antibiotic Treatment

It is time for a tune up.  After nearly three months of struggling to recover from a cold, my lungs and sinuses need a break from fighting infection.  I need a break too, mostly from being tired and fighting fatigue that tags along with fighting an infection.  My doctor and I agreed that IV antibiotics would be an appropriate treatment. 

I went in for a PICC on Monday, June 25.  This was nearly two years from the date of my last PICC (which was placed on June 21, 2010).  The second time was easier in a way because I knew what to expect.  But, it was also more difficult because this time took two pokes.  The first attempt at placement was not successful.  The line would not push past a certain point.  So that line was abandoned and we switched over to try the over arm.  Everything with the second attempt was smooth and only took about 10 minutes to complete. 

In terms of the medication, I am on the same treatment course as last time: Tobramycin once a day and Ceftazidime three times a day.  I also have to have labs drawn three times a week.  Luckily, that can be drawn from the PICC line. 

Moving into day 5 of the treatment, I am feeling better already.  I was actually feeling better after the first day.  These super drugs are amazing!  I could really feel the pressure release off of my sinuses by the second day and I can breathe through my nose again.  And my cough has almost completely subsided.  I am still fighting fatigue...which I am hoping is more from the side-effects of the medication, rather then the infection. 

I'm Losing Track

One function of my blog is to document my health: when I am sick, what medications I am taking, when I see the doctor, when I have labs done, etc.  It really serves as a place for me to keep a record so I can have better communication with the doctors.  I think it is also nice to share information with other CFers and it can also keep friends and family up to date.  But I am having a hard time keeping up.  Not that a lot is going on, but I think it is just hard sometimes to find the time to get all the information into a blog.  Here is what has been going on as of lately:

June 11: I had an appointment with the ENT.  It was a rather uneventful appointment, which is nice when it comes to seeing the ENT.  My previous sinus pressure and headaches subsided prior to the visit, but I wanted to check in with him since I was having some problems and I had not seen him for about a year and a half.  He actually said my sinuses looked good, which I had never really heard before.  He also is taking me off Pulmicort.  So as of right now, I am only doing daily rinses with no added medications.  

June 19: That's today.  I am starting another course of Cipro.  Ever since my cold in April, I have not felt back to baseline.  Although the coughing has not been bad, I have been feeling more junk in my lungs.  But I have also been fighting fatigue.  Last week was rough, as I was having a hard time getting up in the morning, not having a lot of energy to exercise, and not feeling productive at work.  We decided on the Cipro route, which is always challenging to take during the summer. 

I know these posts can be boring, but they are helpful to me to remember what is going on with my health. 

Hypertonic Saline- One Year Later

Well, more like a year and six weeks.  I started using HTS once a day back in April of last year.  From the beginning I have really liked this treatment.  Although it is very harsh and irritates the throat, it is extremely effective at mucus clearance.  But I am finding it may have an additional benefit.

When I went into my last doctors appointment, I was having an increased amount of coughing.  It was irritating, painful, and keeping me up at night.  While my doctor was not concerned with the symptoms I was experiencing, he did mention "experimenting" with HTS during this time.  Sometimes, as he explained it, HTS can be so irritating that it actually creates these types of coughing complications.  So from May 9-May 30 (three weeks) I stopped using HTS.  Within about a week, the long coughing spells stopped.  But soon my sinuses started hurting.  I started experiencing painful headaches and pressure around my nose.  Very classic symptoms to indicate I had a sinus infection. Initially, I thought that I developed the sinus infection post-cold, which is typical.  But on May 30 I started using HTS again and I have not had a sinus headache since! Amazing.  I am hopeful that the HTS is keeping my sinuses in check.  Now I have even more reasons to like this treatment.

General Health Update

Nobody likes getting a cold.  But for most, it is a few days of being miserable and then back on to normal life.  It is not so simple when you live with Cystic Fibrosis.  For me, most common colds turn into full lung exacerbations.  While this has not turned me into a total germ-a-phobe, I do cringe when someone speaks the words "I'm getting over a cold."  It's inevitable...I soon too will have the same cold, but suffer through much more complicated recovery. 

On April 9, I went to bed with that I-think-I-am-getting-a-cold-feeling.  Sure enough I woke up the morning of the 10th sick.  Sore throat, fatigue, stuffy nose.  I stayed home for work for two days (and watched a ton of movies).  By that Friday, I could tell my lungs where now impacted, as I started coughing more and more.  Without hesitation, I call my CF Clinic to start a course of oral antibiotics. I wanted to start treatment right away.  Prescriptions were ordered for 750 mg of Cipro twice a day and 160 mg of Sulfamethoxazole-Trimethoprim twice a day.  I waited out through the weekend to start the antibiotics hoping the cold would just stay a cold.  But the lungs where not clearing up and I could tell they would not clear up on their own. 

After completing the two week course of treatments, I still had a lingering cough.  Not so much chronic, but I would go through coughing "spells" as I would cough a lot in a short amount of time.  I was concerned with these symptoms post-antibiotics.  So I went into my clinic to check in with the doctor.  I saw "the other" CF doctor at my clinic...he is very clinical.  He talks to his patients like we are all medical doctors, using terminology that the average person just doesn't know.  But the bottom line was this: my PFTs only dropped slightly, about 5%, but still above 90%.  His thoughts were I would recover on my own...not really the help I was looking for.  I generally think in more aggressive terms when it comes to my care.  I have a follow up call with the CF doctor on June 10.

Since then, I started having sinus headaches, so I think the cough is more related to post nasal drip rather than an infection in my lungs.  I am working with my ENT...but he is hard to get an appointment with.  We did speak on the phone and he had me start Pulmicort in my nasal rinses and increase rinses to twice a day.  I have used this medication before, but I don't think it is helping this time.  My visit with the ENT will be June 11.

One thing I love about my health care team is the ability to communicate via e-mail.  Although the doctors don't always get back to me as quickly as I would like, they do respond.  It makes managing my care so much easier.  We can be in communication without having to make appointments. This can help facilitate prescription, tests, and general advise.  Good stuff!

Cystic Fibrosis Blog Roll

No Two Snowflakes Are Alike is now part of the Cystic Fibrosis Blog Roll site.  This site was developed as a blog resource for Cystic Fibrosis bloggers.  The website has a blog roll of various CF related blogs.  It is a great place to start if you are wanting to find people in the CF community who are blogging or if you want to advertise your own CF blog.  Check out the website and follow the instructions if you want to have your blog added to the list.