My Back, Part 2-The CF Connection (?)

A few months ago, someone asked me if my back problems where connected with CF. My answer...Maybe, but probably not.  First, I do know my back problems are genetic.  Both my dad and my grandma (dad's mom) have similar back problems and we have all now had the same spinal fusion surgery.  The big difference is I had my surgery at a very young age.  And I am the only person with scoliosis.  The cause of scoliosis is unknown.  Doctors speculate the herniated disks and spondyloithesis was cause from the pressure of the spinal curvature being so low in my lumbar spine (the portion of the spine just above the tail bone).  Those lower vertebrae hold the weight of the entire spine, neck and head.  Scoliosis cause that weight to be off balance, putting more pressure on different parts of the vertebrae.  It is possible the disks and lower vertebrae couldn't handle that pressure and just collapsed.  It is just a theory.  I think the really question is...What made my back so weak in the first place?  It makes sense for this to happen to people as they get older, but not to a 12 year old.

So, is there a CF connection to my condition?  In the Fall addition of CFRI News, author Shelby Cass published an article "Posture and Pain: Can't We Deal With This Later?"  The article follows Mary Massery's, PT, theory about the connection between CF and bad posture leading to spinal cord compression and neurological symptoms such as pain and weakness.  Her theory: the stress of coughing can lead to thoracic kyphosis (the appearance of bad posture).  This can lead to damage of the spinal cord, joint pain, and neurological pain.  The article goes on to stress the importance of stretching and exercise to keep joints healthy.

I don't know if this theory applies to me and I don't know if my back problems have anything to do with CF.  The truth is, I will never know.  I am interested in this topic, however.  I am going to continue to research more about this and talk to the CF clinic to see if they have any opinions about back problems connected to CF.  I'll report any interesting findings.

My Back, Part 1

I received a comment a couple weeks ago asking about my back. This blog post is in response to that comment. 

In 7th grade, I went through the standard screening for scoliosis. I was found to have this condition, which is when the spine curved. Around the same time, I started to have a strange pain in my leg. It would happen frequently and I had a difficult time standing for a long period of time. The pain was thought to be caused by the scoliosis. My freshman year in high school, the doctors wanted to operate and straighten my spine. Just prior to the surgery, I had an MRI that revealed two herniated disks and a condition called spondilothesis which is a displacement of the vertebrae. In other words, things were really messed up. They decided to hold of on the surgery to straighten my spine and decided instead to deal with the herniated disk first. It was clearly pushing on a nerve.

This is not my spine, but this a picture of a displaced vertebrae. 

I had surgery the summer before my sophomore year in high school. It was very successful at eliminating the leg pain in one leg, but triggered the pain to move to the opposite leg. But through a lot of physical therapy and hard work, the pain subsided and my back felt great for years.
As I got older, however, my lower back really started to bother me. No amount of exercise helped. I was very limited in my activities. In January 2006, I decided to have the spondelothesis corrected and I had my spine fused from L4-S1. It was a very complicated surgery. The recovery from this surgery was difficult. I had a lot of residual nerve pain. Plus they did a bone graft from my hip and I think most of my post-surgery pain was from that. About two years after surgery I had two epidural nerve block injections, which I think helped a lot. But to this day, they area where the donor bone was taken still bothers me…it just doesn’t feel normal. What ever normal is.

I am trying to scan picture of my x-rays, but it is not working.  Hopefully I will figure something out.

Work Out Wednesday- Physical Therapy

This Sunday will mark the 5th Anniversary for my spinal fusion surgery.  A while back I received a comment asking if I would talk more about my back problems (and if these problems connected to CF).  To respond to that request, I thought I would dedicate the next week to posting information about my back problems.  Here is the first post!

I started going to Physical Therapy in December to address some back pain I was having.  In late October I had a flare-up and ended up in PT.  Initially I was not impressed with the first PT I went to.  She spent about 15 minutes showing me several different stretches and core strengthening exercises.  The exercises where good; her instruction was not.  With previous PT experiences, I always spent about an hour or so with the PT actually doing the exercises.  This PT just showed the exercises to me and then sent me on my way to implement the program on my own.  The second appointment was not any better.  During this appointment, however, the PT suggested I take a back strengthening course to help with my condition.  At first I was against taking a class, but I thought it couldn't hurt, especially after having such poor PT sessions.

Two weeks ago, I attended the first class.  It was actually really good.  The class is an hour long and I learned core/back strengthening exercises.  We spend the whole hour actually doing the exercises.  After the first class, I already felt like I was walking straighter and I didn't feel so much tension in my lower back.  The second class was yesterday and there will be six classes all together. 

The teacher also gave suggestions for at home exercises that should be performed about 5 days a week.  The exercises take about 30 minutes all together.  Initially, I felt a little overwhelmed because I already work out five days a week and to just add on another 30 minutes a day seems impossible.  At the same time, I really like my gym routine right now and I don't want to substitute this new work out for something else I am already doing.  As a trial, I am going to do the exercises on my lunch break.  This way I can fit it into my normal daily schedule, without feeling like I have to spend two hours at the gym.  So far it is working well. 

ENT - Sinus Update

I had an appointment with my ENT last week.  The visit went ok.  It was one of those visits that seemed to be going really well during the actual appointment, but then afterwards, I start second guessing everything that happened.  I think it went something like this:

First we talked about my status. During the past 3 to 4 weeks my sinuses have been feeling really good.  Probably the best I have felt in a long time.  For three months I had been mixing Bactroban in my nasal rinses twice a day up until the end of December.  Even during the time where I was not using antibiotics, my sinuses did rather well.  Now, that is not to say that my sinuses have been perfect. I still get pressure and pain, but it is mild...at least compared to how bad things felt earlier this year.  This is good news. 

Reporting this good news to the ENT, I think he took that to mean "problem solved." Not that he said that out loud, but it just didn't seem like the usual ENT visit.  For example, he did not use the scope to look at my sinuses.  While I was excited at the time because I hate the scope, but really it is the best tool the doctor has to see what is going on.  And I find it hard to believe he didn't think he needed to look up there.  Looking back, I should of asked why he wasn't going to perform the exam. 

I also talked to the doctor about pain control.  Basically, I don't use any pain relief when I do have a flare-up because I feel like I need to gauge how bad the situation gets.  Which makes it really hard to function and get through a normal day.  He told me to stop doing that.  And that I should contact him as soon as the symptoms starting getting bad so he can implement a plan right away.  He said he has a "few tricks up his sleeve" and that I should not be suffering through a flare-up.  This was nice to hear.  I think I needed to hear that from him to know how to handle a flare-up better. 

Another missing piece of this visit was we did not go over my medications.  I should of ask to do that, just to see if we needed to chance things up or keep going on the same path.  Maybe not a big deal, but it just seems like a gap.  Also, he didn't tell me when he wanted to see me again.  I followed up with him on this one.  If my symptoms stay mild, follow up in 6 months.  If I have a flare-up e-mail him and he will decide the right course of action. 

Little Jeter

About a week ago, I noticed my dog Jeter licking the air.  I thought maybe he had some food stuck in his mouth or something.  But when I checked it out, I found that he had a loose tooth.  It was one of those big molars about half way back on the top part of his mouth.  The next day I took him to the Vet.  Just as I figured, the tooth needed to be pulled.  This molar has three roots, so it is an involved surgery to get the whole thing out. Luckily, they where able to pull the tooth the same day.  I feel so bad leaving my dogs at the Vet. They just looked so scared.

The surgery went fine.  Jeter was pretty sad when we brought him home later that night. He would just sit around whimpering. It was the saddest noise I have ever heard. But, he was doing much better by the next morning.  And a week later he is totally normal, eating crunchy food again and he even got a bone to chew for a little while.

What was really cute was the little bandanna the Vet gave him, which states "I was brave." Good boy, Jeter!

From Drop Box

From Drop Box

Work Out Wednesday- Rock CF

On March 20, 2011, I am going to be participating in the first (annual ?) Out Run CF Virtual Run! While Rock CF is hosting a Marathon in Grosse Ile, Michigan that day, they are also hosting a virtual run so everyone can participate.  Also, each participant can select their own distance and pace.  That being said my goal is to do a 5k walk in about 45 minutes.  Although  I would love to run, running is very difficult for me because of my back problems.  But I can walk pretty fast, so I am looking forward to participating.  


After registering, I thought about where I want to do my walk.  I could just jump on the treadmill at the gym, but that sounds boring.  Then I thought about walking on a path around the local lake, but that is what we do for Great Strides.  Then it hit me.  I live 60 miles from the Golden Gate Bridge.  It is the perfect place to walk.  The bridge is 1.7 miles in one direction.  Around trip that puts me at about 3.4 miles, just over a 5k.  I am so excited about this.  I am pretty sure Ethan is going to walk with me too.  Anyone else in the Bay Area is welcome to join us. The cost to participate is $20.  And I think you get a t-shirt to wear the day of the event. A great way to promote CF awareness. I am hoping it is a nice day in San Francisco.  Most days are cold and foggy, so we will just need to be ready for any weather conditions.  

CF Clinic

I had a quarterly clinic appointment last week.  Overall the appointment was good.  My PFTs where down about 9% (FEV 1), which is a little disappointing.  But during my last visit, my PFTs where at the highest ever, so I knew that would be hard to duplicate.  I talked with the doctor about the significance of this drop.  She had no concerns, what-so-ever.  First she said my numbers are still really good, even if I am below my personal best from last time.  These numbers are also well within my average range for the past year that I have been attending this clinic.  Additionally, she said this disease is not just about the numbers, it is also about how I feel.  Since I am feeling really good right now she includes that in her assessment of what these numbers really mean.  I guess I am a little disappointed because I have been working really hard; 100 % compliant with treatments and meds.  I was hoping to stay at that high PFT level.

We also talked about my sinuses.  My sinuses are here and there.  Some days I feel fine and other days are really hard and painful.  I asked about sleep apnea.  I have been researching sleep apnea, as it is a common cause of sinus complications. Basically, sleep apnea is a loss of oxygen while sleeping.  There is one form of sleep apnea that occurs and you would have no idea you are losing oxygen.  The Dr. was more than willing to order a sleep study for me, although she did say she would be surprised if that was the problem.  Yeah, well I have been surprised by test results before, so lets see.  My appointment is on January 26.  I will pick up some equipment and use it that night at home.  I'll learn more about how it works at the appointment to pick up the equipment.

A funny thing about the appointment: I knew two other CFer attending Clinic that day.  I saw one person before and one after my appointment.  I met both of these women at a CF fundraiser.  It was nice to be able to catch up with both of them.

Work-Out Wednesday-Water Aerobics II

I am trying something new with water aerobics.  Previously, I was trying to attend two classes a week: one on Saturday morning and the other on Wednesday mornings.  I was taking Wednesday mornings off from work  (as part of a mandatory time off program), but it was very difficult to balance going to class and then getting ready for work.  So, I have decided to make my own class.  I have been doing water aerobics long enough to know the proper way to exercise and fill in the time.  I have "gone to class" twice now and it is working out well.  I wrote up four classes to use as a guide while I am out there.  It really helps to have a routine written out prior to jumping in the pool. It keeps me on track and moving the whole time I am in the water. 

I find this time in the pool to be very peaceful.  Because it is winter and I am in an outdoor pool, there is not a lot of other activity going on out at the pool.  I am really enjoying the quite time, working out, being in the warm water.  Also, because I am going after work, I am in the pool at sunset.  The scenery is beautiful: not dark, not light. Love it.  I am excited that this idea is working out!

No Antibiotics For Me!

I am happy to report that somehow  my cough managed to cease on its own and I will not be needing antibiotics at this time.  I think this is the first time (in a long time) since my cough went away without antibiotics.  That just never happens to me.  My doctor wanted to wait for the treatment to start until my culture results where finished.  I cultured moderate growth of psedudomonas aeruginosa and light growth of staphylococcus aureus, the usual suspects.  I showed sensitivity to Cipro.  However, by the time we got the results, my cough was minimal.  I increased airway clearance to three times a day while waiting for culture results, doing Acepella in the morning and afternoon and the Vest in the evening.  I think it really did the trick! I'm trying to stick with three treatments a day, but between work, trying to eat healthy, and exercise, its hard to fit it all in.  CF clinic next Thursday.  Interested in seeing PFT results after having a flare-up with no antibiotic treatment. 

During all of this my sinuses have stay neutral, not bad, but not great.  I went about 6 days with no sinus symptoms.  It was such a nice break from the pain, pressure and being tired all the time.  Yesterday, pain and pressure started up again, but luckily I am not feeling tired right now.  I have a follow up with the ENT in two weeks. 

Work-Out Wednesdays-My New Pedometer

For Christmas my husband's parents bought me a Pedometer.  It was something I had on my Christmas wist list.  I know, it is incredibly dorky, but I thought it would be fun to have.  For a while now, I have been wanting to track the distance I walk when I am at the animal shelter, when I walk around my neighborhood, shopping at the grocery store, stuff like that.  I thought it would be fun to see how much I walk in a day just doing normal stuff and having a way to track the distance I walk while exercising too. 

I have been using the pedometer for a few days now.  I was surprised to find out that on average, I really don't walk very much just doing normal everyday stuff.  Excluding any exercise, I have been averaging around 3,000 steps, which is only about a mile. 

I have not really decided where to go from here with the pedometer. I think I will really focus on using the pedometer to track exercise related distances and use an app on my phone to log my progress.  Once I get a sense for my baseline, I can make goals to improve my pace and workouts. 

Goal Achieved!

I normally don't blog much about work, but I have good news related to my career.  I was pleased to find out this morning that I am now a Registered Environmental Assessor (REA).  Basically, this is a license that authenticates my work as an Environmental Scientist.  While the license does not provide much change in my current position, it is a great item to add to my resume.  I wanted to get this license to provide growth and development in my career; to have an achievement.  I had this as a goal for myself and now I can say it is achieved!