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.