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.
Tuesday, December 18, 2012
Monday, November 26, 2012
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.
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.
Wednesday, November 21, 2012
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.
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.
Wednesday, August 29, 2012
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.
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.
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| Here is a picture of the TRX. This is not me...I don't smile like that when I am exercising. |
Wednesday, August 22, 2012
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.
Tuesday, July 31, 2012
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!
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!
Wednesday, July 18, 2012
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.
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.
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