Treatment Update

Day 4 of my first IV antibiotic treatment. I must say, things are going well. I am on two antibiotics: tobramycin once a day and ceftazidme three times a day (every 8 hours). I administer the tobramycin in the evening and it takes about an hour. The ceftazidme is at 6 am, 2 pm, and 10 pm.

At times I feel extra tired, but it comes and goes. For the most part I am feeling really good. Is it helping? I think so...but its hard to judge. I am just hoping this keeps my sinus infections from returning so quickly, as opposed to feeling better immediately. The real test will be how I feel when the treatment is over.

I had my dressing changed after 24 hours. I actually enjoyed it, because my skin was itchy under the bandage, so it was nice to give my skin a few minutes to breath. I also had blood drawn from the line. That is awesome...no needle pokes. I didn't even realize the nurse was drawing blood until after she was done. Almost makes it worth having the PICC. I has more blood tests today and back for more Saturday. Basically, I'll have blood labs done three times a week and then a dressing changed once a week.

Emotionally, this experience is a roller coaster ride. At times I feel like this is no big deal. There are people out there with more serious medical concerns, this is really just a tune-up. Other times I feel like this may very well be something I have to do all of the time, for the rest of my life. Could be worse...but it is a lot of work keeping up with this schedule and it has really mess with my normal routine, including exercise and sleeping. I have had such a comfort in knowing I had CF but "never needed IV antibiotics." As if that treatment defined healthy vs not healthy. The only thing I can really do is move forward. I went 32 years without needing IVs...maybe I will go another 32 before I need another.

I survived my first PICC

Over the years, I have become nervous with invasive medical procedures. This has been mostly triggered by bad experiences. Going for my first PICC I was nervous because I have small veins that seen to be hard for nurses to work with. I was mostly nervous at the idea of being poked numerous times or just being in a lot of pain. Everything yesterday went better than I could of asked for.

After being administered a light sedative, my body was able to calm down, although my mind was still nervous. But I was at a place where I felt comfortable enough starting the procedure. I turned my MP3 player on and just thought about the music. In all, the procedure only took about 10 minutes. Then we walked over for an x-ray to make sure the placement was correct. After a minor modification, the line was set and I was off to learn how to administer my meds.

The whole process was complete in the Infusion Center, a.k.a The Chemotherapy Unit. It was difficult being in an area with mostly cancer patients. There was a young woman in there receiving Chemo, probably younger than me. I realized I had a lot to be thankful for...my PICC was being placed for antibiotic treatments. Others are there for something way more scary. I also received my first treatment at the hospital. In all I was at the hospital for 5 hours. It was a long day.

Everything is going well so far. I am tired this morning, but otherwise it's business as usual. I'm working today and I will even be giving a small presentation to my co-workers.

IV Antibiotics-First PICC

My sinuses have been up and down over the last two years. The past year has been ok, with a few minor problems here and there. Although, stuff up there has never really ever felt great. The past six weeks have been a challenge. Headaches, fatigue, and not really being able to breath through my nose...the doctors and I have decided to try IV antibiotics. I go in Monday for a PICC. This will be my first PICC, so I am pretty nervous. I have no idea what to expect, but I know I don't handle intrusive, foreign objects poking me very well. I have requested some form of sedation, so I hope that will help. Even if it just keeps me calm and from freaking out. Its not so much the pain I am afraid of, its the idea of tubing moving around in my vein...it creeps me out.

This is a milestone in a way. On the one hand, I know I am lucky to have never had a PICC before at 32 years old. On the other hand, I worry that needing IV antibiotics is a sign that my health is declining. However, I have felt I needed this form of treatment two years ago when I was on disability because my sinuses hurt so much on a daily basis. If this is the treatment I need and it actually helps my sinuses and frees me from all of the pain, then this treatment will only make me healthier than ever!

WICKED

About a month ago, I (finally) saw the play, Wicked. It was delightful. The play is a spin-off of the Wizard of Oz, in which you learn about the Wicked Witch and why she is "Wicked." What I really loved about this story is the connection to the Wizard of Oz. That is such an important movie in American history. I remember as a child how exciting it was to watch the Wizard of Oz on TV. This was before VCR's, so we couldn't just buy the tape and watch it whenever we wanted. We couldn't even record it. It was so special because the movie was only shown once a year. It was a day in the year when we got to stay up late. Seeing some continuation of this childhood memory was nostalgic. I'm glad I got the chance to see this play, I'd even see it again.

Mild CF II

After posting a blog about having mild CF, PicklePits left me a comment with several follow up questions. She has two children with mild CF and has been following my blog to learn about what having mild CF really means. I thought about sending her a private message back, but thought others might be interested in the answers too. (This blog may contain TMI)

Question 1 "When/what is your earliest memory of a CF related health issue?"

Answer: For most of my teenage life I coughed up mucus. I was always at the doctors. I must of had three dozen sputum cultures when I was in Jr. High/High School. I was on antibiotics frequently. The problem here was normal sputum cultures do not show CF bugs, so this information was being missed. Also, I was put on non-CF antibiotics, so they really never worked for me. I really don't remember couching much until I was around 12 or 13.

Question 2 " Do you recall any CF related changes (good or bad) that came along with puberty?"

Answer: I never really thought about it, but YES! I would say around 6th grade is when my symptoms really started to show. I remember one time telling a girl at school that I had a cold for three months. I think there was an assumption that the symptoms were allergy related. I didn't have more sever symptoms until I was a little older with chest pains at age 17 and couching up blood at age 18. Keep in mind, I didn't know I had CF during this time, so there were no preventative treatments in place at this point.

Question 3 "Are you able to have children?"

Answer: The doctors have told me I am healthy enough to have children. There are some fertility complications with CF. For women, thick cervical mucus can act as a barrier to sperm. I do not know if this is a complication for me. An interesting fact with CF male infertility. As you may know, 98% of males with CF are infertile. Of the 2% that are fertile, 70% have a "mild" CF mutation.

Question 4 "How has CF clinic accommodated your health needs? Has the clinic adequately addresses the issue of being a mild CFer?"

Answer: This is a hard one to answer and I think would make a good blog topic on its own. I'll address separately in a few days.

Questions 5 " Have you met other mild CFer? How have their health issues compared to yours?"

Answer: Everyone I now know with CF is through social networking via the internet (blogging, forum, facebook, etc). From my observations, other CFers who are considered to have a mild case are all over the board how they compare to me. Some have higher PFTs, yet are on more regular medication than me. Some have been hospitalized a few times, where I was only hospitalized once (and it was only an overnight stay, not a traditional stay). Most have some type of chronic sinus problems. Some (but not all) are pancreatic sufficient. Most mild CFers seems to be able to carry on life as normal with full time jobs, college, etc. Also, there are not a lot of people who state their condition is mild. Where do doctors draw the line with mild CF and non-mild? I don't know. We all have our own stories with this disease.

I'll add one more observation about my disease compared to others: I am definitely on the higher end of "healthy." Almost every CFer (mild or non-mild) I meet has lower PFTs, is on way more medications then me, is frequently hospitalized, and must dedicate much more time to care and treatments then I do. I am very lucky under the circumstances.

More to come, stay tuned!

Mild CF

Last week I posted information about my CF mutations, including one mutation associated with mild CF. I thought writing a blog about mild CF would make a good blog topic. Having mild CF means:

• I cough everyday. I clear my throat all the time...the more I talk the worst it gets.
• I do treatments for mucus clearance. My first choice is exercise and I use an acapella. I also have a vest, but I only use it when I am below my baseline.
• I have major sinus problems. I know I will battle this for the rest of my life. In turn, I do sinus rinses every day, twice a day.
• I take three medications regularly. They are all to control sinus infections/inflammation.
• I had sinus surgery in 2008.
• I go to clinic 4 times a year.
• I have above average PFTs, except small airways.
• I am pancreatic sufficient. I do not take any enzymes.
• My normal antibiotic is oral Cipro. A three week treatment when I am below baseline is usually the best treatment plan that works.
• I have never need IV antibiotics.
• I have only been over night in the hospital once related to CF. The stay was for one night.
• I live a pretty normal life. I am married, have two dogs, I am a homeowner, I work full time, and I have a college degree.
• I know I am lucky to be healthy and have a CF that is mild.

Mutation

In 1996 when I was first diagnosed with CF, I had DNA testing done to determine my mutations. They found DF508, but listed the second as unknown. A few months ago, I had the DNA retest to see if the advance in technology could help identify the second mutation. And it did! My second mutation is 3849+10kbC-T. A genetics counselor discuss the significance of this gene with me. It turns out it is known to be associated with mild CF. Most CFers with this mutation are diagnosed later in life, are pancreatic sufficient and have higher lung function. These are all true of me too.

Although I really didn't need these results to know I have CF, it is very interesting and somewhat helpful to discover. Especially because the findings of the research completed fits my life so well. They described to me why they think this mutation is correlated with mild symptoms. It mostly has to do with the presence of a protein that is normally absent with CFers. In some cases only a small amount of the protein is present, but it is enough to make a huge difference. A lot of research is focused on this concept to develop a cure.