Archive | October 2011

Blogging has Changed my Life for the Better

I’ve been blogging and reading blogs for almost 2 months now, and I’m amazed at how it changed my perception toward my disease and life for the better.

I never thought that I would be the type of person who had the dedication and desire to blog on a regular basis.  I love writing, but to until a few months ago, sharing my story with the world seemed selfish to me.  I have come to realize that while there is a “selfish” aspect to blogging, it extends far beyond that.  I like to keep track of where my viewers come from, and the fact that people from around the United States and from other countries have viewed my blog amazes me. It means that while I’m enjoying venting and writing about my journey with Cystic Fibrosis, others are enjoying it or learning from it as well.  It’s one of the best feelings in the world to gain acknowledgement for what you’ve written and in turn know that you are slowly raising awareness about cystic fibrosis.

In addition, I’m slowly becoming a better writer (at least in my opinion) also.  I’m working on phrasing sentences better, and trying to make my writing enjoyable to my readers. Since I hope to one day complete a novel, this skill is critical for me to learn.  Blogging offers the perfect platform to hone my skills and gain personal response from readers.  I look back at what I wrote two months ago, or even last month, and feel that my current writing is stronger.  I’m so glad that I have gotten into writing blogs.

Even more important, however, I have been thoroughly enjoying reading blogs.  I have a good number of blogs that I check daily for updates.  I eagerly await new posts so that I can see how my fellow cysters and fibros are doing.  To me, reading other blogs feels like I am offered a chance to read their journal or diary. I feel connected to others in a deep way, and it never ceases to amaze me how much people truly expose their soul in blogging. New posts are like candy to me, and I also enjoy commenting on what I’ve read when I feel I have something pertinent to say.

It also amazes me how many of the authors reply to comments that I (or anyone) makes. They enjoy the feedback and work hard to acknowledge comments and answer questions. It’s truly remarkable.  I am surprised and encouraged by their dedication to their readers, and to raising awareness for CF.  I cannot emphasize enough that the group of authors I follow are truly amazing and inspirational people.

I also have to say that I have gained a “family” through this blogging experience.  I feel that I know a few girls, in particular, very well.  We are all on a similar road in our lives and beating CF on a daily basis.  I feel like they are my “go-to” people when I have a question, and I look forward to talking with them about new changes (or lack of changes) in their life.  My husband, family, and friends are a wonderful support system that I wouldn’t change for the world, but there is something to be said for my “cysters.”  My family/friends sympathize with me, listen to me vent, and love me unconditionally, but my cysters understand exactly what I’ve gone or am going through.  They know what it means to gag from coughing so much, to have a CF belly, to be upset when your PFTs go down, to feel the sadness, confusion, and anger of a fellow cyster or fibro passing away before his or her time, and to feel the frustration that this disease carries with it daily.  I am so blessed to have these people in my life and I can’t wait to continue following their journeys.

Finally, blogging has led me to discover a new CF website.  I am so grateful to its creators, Mr. and Mrs. Sharpe! It is the best outlet for cysters and fibros in the entire world. The site focuses on offering a POSITIVE and ENCOURAGING community. If I ever have a CF question, I head there right away. If it hasn’t already been asked, I can usually pose a question and receive a few responses by the end of the day. The “family” that is created on that site is incredible. I have learned more about CF than I ever knew before, have gained a more positive outlook for this disease, and have gained perspective in life all from this site.

All in all, these last two months have been a wonderful change for me. I’m growing daily as a cyster and a writer and I’m gaining a sense of family and community through blogging.  I’m so grateful for all of my continued readers who push me to make my posts better and more interesting, and I’m grateful for my fellow writers as well.  I am so proud to be part of this cystic fibrosis community, and I’m so blessed to have people who care about me enough to follow my story.  I live such an amazing and blessed life – hard to believe it’s all real at times.  🙂

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CF Belly and New Jeans

Let me begin by saying that I have always, always been self-conscious of my belly.  I will not show it to anyone and I hate shirts which emphasize its size (especially relative to the rest of my tiny body).

That being said, my past weekend included a trip that I didn’t think I would be taking this early in my life, and this blog will detail something I never thought I would write about (although I hope it will help other cysters).

A few months ago my doctors gave me a strict order that I needed to start gaining weight. Well, 8 pounds later, my pants won’t button and the ones that I can wrestle together end up causing me terrible stomach pains.  Obviously, it was time to get new pants, but I have an issue in this department.

Due to my cystic fibrosis, my arms/legs/butt stay really thin and refuse to let meat be added onto them, but my stomach keeps growing (it also bloats like no other due to digestive problems. I swear that some days I look at least 4 months along).  I’ve tried crunches but I really don’t think that my abdominal muscles are the problem because with all the coughing I do daily I work them out pretty well.  Up until a few weeks ago, I thought I was the only one who experienced this not-so-pleasant phenomenon.   Other cysters, however, have posted blogs about their CF belly and I have come to find out that I am far from alone on this journey.

Before putting on weight, I was wearing at most a size 3/4 jean.  They were baggy in the thighs and butt, and they fit tightly around the waist.  This is the issue I have had forever and I was getting used to it.  With my increasing belly, however, I realized I need to go up to a size 5/6.  I reluctantly tried a pair on and realized quickly that both of my thighs would easily fit into one of the legs, but the waist would just barely snap closed.

Well now, I was discouraged.  If I wanted a comfortable pant size with room to grow I would have to buy 5/6 and 7/8 jeans, but if I wanted them to fit my thighs and butt I was going to need a size 1/2.  This is a depressing conclusion to reach when you are trying to conform to retail-driven America. I know that I am not the only woman out there who loathes buying jeans because you just can’t get the right fit. . . ever!  Thankfully, a  light bulb was going off in my head:  Maternity jeans.

That’s right.  I’m not pregnant (although I have been asked when my due date is), but I quickly made my way into Motherhood Maternity in my local mall.  I felt completely out of place in this store since there was no little life growing in my belly, but I started to browse through the jeans regardless.  I tried on a small size and an extra small size, hoping that at least one pair would fit correctly.

As I went into the oversized dressing rooms (these should be in every store, honestly), I quickly pulled on the small sized jeans.  The feeling in my stomach was amazing. There was no struggling to button them, struggling to breathe, or intense pain whenever I sat down!! The legs, however, were still too big.  I looked at my thighs swimming in the material and my non-existent tush in the mirror.  I quickly took them off and crossed my fingers that the extra small pair would fit just like they should.

I pulled the extra small on and have never felt so excited to be jean shopping in my life! They were perfect! Again, no pain in my stomach, but this time my legs fit normally and while my rear is still somewhat non-existent, it still looks better than it looks in normal jeans.  I was thrilled!

I rushed out of the dressing room and looked for additional extra small pairs, but all I could find were boot cut which unfortunately I cannot pull off.  I sighed, realizing that my size is still the minority, but still feeling excited as I brought my one pair of jeans to the cash register.  I do plan on hitting the store again early next month or checking out Kohls maternity section.

As I paid for my jeans, the store clerk asked me numerous questions about pregnancy and when I was due, to which I had to sadly tell her I was not pregnant.  Surprisingly, she was nice about it. She said that many customers who are not due come into the store because the clothing seems to fit better than standard clothing.  She did, however, sign me up for coupons and give me an exciting goodie bag!

When David and I got home we couldn’t help but laugh at the goodie bag.  We now have a (gender-neutral) pacifier for our future child, nursing pads, and loads of reading material on breathing techniques and the dos and donts of pregnancy.  I may not use them for quite some time, but I decided to keep them anyway.  Why not? They’re wrapped well so they will store just fine.

So next time you see me (please don’t ask me when I’m due), I’ll probably be wearing pants with a spandex material for the tummy.  You may not notice the difference (or maybe you will..how do I know?), but I can assure you that for the first time in months I’m not having extreme stomach pain every time I sit down.  And that my friends, is worth braving a trip to the maternity store, even when you’re not pregnant!

Why I’m excited for Vertex Pharmaceuticals, Inc.

Yesterday, I subbed in a 5th grade classroom and I realized, yet again, how much I miss working. Due to the economy, I have not had the option to work, but the underlying reason I have yet to be employed is far deeper.  When I was working full-time last year, my lung function was not doing as well, I was missing treatments, and I was getting sick. . . often.  David and I realized at that point in time that my life-long dream of being a full-time teacher is, currently, unobtainable. My lung function is incredibly high and I am grateful for that, but if I continue to work full-time, my lung function will not be high for long.  It’s impossible for me to include a full-time teaching job (plus coaching/activities, grading, lesson planning, and other take-home work), maintain my rigorous treatment/exercise schedule, makee dinners, and help keep the house clean.  It’s overwhelming and there simply are not enough hours in the day.

Facing this fact is depressing, but I’ve had almost a year to get used to it now.  I keep looking for jobs that will be flexible enough to make my treatment schedule work, and would be away from enough germs to keep me healthier. I can tell you that it is nearly impossible.  I’m currently subbing as much as possible which keeps my dream alive, but still exposes me to a tremendous amount of germs.  Sadly, I came home yesterday from subbing feeling beyond wiped out and still had to make time to cook dinner and do my treatment. It was another reminder that my health is not as good as it used to be even 2 years ago.

With that said, David and I have a goal: keep me as healthy as possible so that I can fully enjoy the benefits of a cure for CF.  Enter Vertex Pharmaceuticals! Vertex has been in the process of working on two therapies which treat the underlying cause of cystic fibrosis. Up until now, every drug on the market has been about treating the symptoms, so this new drug would be groundbreaking.  Today, Vertex has announced that it has officially submitted its drug, VX-770 for FDA approval.  VX-770 would not treat my CF mutation (DDF508), but it would be a miracle drug. It is being seen as the “cure” for CF right now, and the best part about the drug is that it’s a simple pill to swallow.

Vertex is also actively working on a combination drug which is specifically for my CF mutation (the most common mutation in the CF community).  They are currently in clinical trials throughout the United States and so far it seems the drug has shown very promising results.

Here is the text taken from the Vertex site which further explains these new drug therapies.

“VX-770
(Cystic Fibrosis)

Cystic Fibrosis (CF) affects about 30,000 people in the United States and approximately 70,000 people worldwide. Cystic fibrosis is caused by defective or missing CFTR proteins, which result in poor ion flow across cell membranes, including in the lung, and the accumulation of abnormally thick, sticky mucus that leads to chronic lung infections and progressive lung damage. In people with the G551D mutation, CFTR proteins do not function normally at the cell surface. VX-770, known as a CFTR potentiator, aims to increase the function of defective CFTR proteins by increasing the gating activity, or ability to transport ions across the cell membrane, of CFTR at the cell surface. In people with the F508del mutation, CFTR proteins do not reach the cell surface in normal amounts. VX-809, known as a CFTR corrector, aims to increase CFTR function by increasing the trafficking, or movement, of CFTR to the cell surface.

A Phase 3 clinical development program for VX-770 is complete, and Vertex submitted a New Drug Application for VX-770 to the U.S. Food and Drug Administration (FDA) in October 2011. Vertex is seeking approval of VX-770 for use in people six years of age and older who have at least one copy of the G551D mutation in the CFTR gene. Vertex also plans to start the registration process for VX-770 with the European Medicines Agency (EMA) by the end of October 2011.

Vertex is also conducting an exploratory Phase 2 clinical trial to evaluate combination regimens of VX-770 and VX-809 in people with the most common mutation in CF, known as F508del.

VX-809 is the second investigational oral drug candidate for the treatment of cystic fibrosis (CF) to be advanced into development as part of a successful collaboration with the Cystic Fibrosis Foundation Therapeutics, Inc. (CFFT).

Cystic fibrosis is caused by defective or missing CFTR proteins, which result in poor ion flow across cell membranes, including in the lung, and the accumulation of abnormally thick, sticky mucus that leads to chronic lung infections and progressive lung damage. In people with the F508del mutation, CFTR proteins do not reach the cell surface in normal amounts. VX-809, known as a CFTR corrector, aims to increase CFTR function by increasing the trafficking, or movement, of CFTR to the cell surface. In people with the G551D mutation, CFTR proteins do not function normally at the cell surface. VX-770, known as a CFTR potentiator, aims to increase the function of defective CFTR proteins by increasing the gating activity, or ability to transport ions across the cell membrane, of CFTR at the cell surface.

Vertex is conducting an exploratory Phase 2 clinical trial to evaluate combination regimens of VX-770 and VX-809 in people with the most common mutation in CF, known as F508del. Vertex recently completed the first part of the trial and is on track to initiate the second part of the trial in September 2011.”

 

The news makes me want to cry. It’s impressive, incredible, and miraculous. I’m unsure of whether the CF daily treatment schedule would be altered at all, but regardless if it makes me healthier, it’s one step closer to getting into a classroom for real. It’s one step closer to being able to work full-time again. I know many reading this will think something along the lines of, “Trust me, you don’t want to work.” To those people, please try to understand the emotional/mental toll that unemployment can take on you.  I am failing to help provide for our family, and there are days when I feel incredibly worthless. David fights me to the end on these feelings, but regardless, they’re still present. I can not wait to be able to work again.

Above all, if this drug goes through the rest of its clinical trials and becomes FDA-approved, it is one step closer to seeing my 75th birthday and beyond. It’s a step toward a longer, healthier, and more enjoyable life, and it will provide extra years with my husband. I don’t think anyone can blame me for being just a TAD bit excited! 🙂

Grateful for this week!

This week is going to be a challenging week for my husband. I wish there was a way that I could make it easier for him, but other than providing food and comfort, my hands are tied.

Since it’s going to be such a long/hard week, I figured I would take some time to write about a few things I’m grateful for and excited for this week.

#1) My sister is coming over for a visit today.

I am so blessed to have such a close relationship with both of my sisters, but unfortunately only one lives close to me.  My sister, Ellen, normally works 40 hours a week and commutes over 10 hours a week, so our time to hang out is rather limited.  Today, she’s going to come and spend some time with me.  Normally during our hangouts, we talk a lot and do very little of anything else.  It’s nice to just catch up with each other and give advice to each other, and I look forward to our time together (however limited it may be).

#2) Fall is definitely here

We have been experiencing an Indian Summer in Illinois, but the last few days the weather has drastically changed. Today, I woke up to a 32 degree wind chill and even thought about turning on the heat.  I’m ready for the chilly air this month and I’m getting excited for Halloween, Thanksgiving, and before we know it, Christmas.

#3) My library is now participating in Kindle sharing

Last Christmas, my parents gave us a Kindle, and I have absolutely enjoyed it.  Unfortunately, I do not buy books anymore (too expensive, and we have too little money), and I was running out of good, free books to read on the Kindle.  Because of this, I was making weekly trips to the library, which I enjoy but sometimes I just want a new book without leaving the house.  Yesterday, I logged on to the library website and noticed that Kindle sharing was finally here! I immediately jumped onto the website and downloaded my first library e-book! It was so exciting, and I’m already greatly enjoying my new story!!

There are so many more people/items/experiences I am excited or grateful for this week, but these are the top ones on my list right now.  I hope everyone is having a wonderful start to their week!

How Would my Life be Different?

Have you ever had one of those moments where you look back at your life and you realize that hundreds/thousands of individual events have all come together to form your life the way it is now?  I’ve had these moments throughout my life, and I realize how blessed I am for the way things have turned out in my life so far.  I was thinking about how blessed I am with my PFTs and my life right now, and I was thinking about how it would all be different if certain events had never happened.

First, I was entirely blessed that my dad finished his nursing degree right at the time I was born.  He knew the medical terminology, knew various medical issues that were hot topics in the medical community, and he was able to do the feeding tubes I needed without problem.  In addition, he pushed to find a CF center that was not jumping on antibiotics every time a child got sick.  He felt that resistance would be a future issue, and he wanted to let my immune system fight what it could on its own.  Wow, am I grateful for that.  At this point in my life, I’m resistant to a few antibiotics, but thankfully not too many.  Because of this push, I have been at University of Chicago since I was born.  I had one of the best pediatric doctors in the world, Dr. Lester, and she was wonderful.

Tying in with the above, I am so fortunate that I live close to Chicago.  I can’t imagine how different it had been if I had grown up in a state that didn’t have the massive teaching centers that Chicago offers.  Chicago has numerous teaching centers and I think the standard of care provided at University of Chicago is incredible. Had I been in a state without an established and well-known CF clinic, then my life might be totally different right now.  I have been blessed with an amazing, caring team of doctors who are entirely focused on my health.  In 2008, I had sinus surgery and cultured both MRSA and P.A. in my sinus cavities.  I was told that they had numerous doctors together discussing my case to figure out the best way to treat me.  When it comes to my health, I won’t lie to you, I love being talked about J.

As stated initially, my dad’s career choice was a blessing in my life.  I also, however, was blessed to have the parents I do.  My parents treated me like a normal child from day one. CF was not a disease I was going to die from. They encouraged me to be just like every other kid.  When I was little, I was outside running, biking, rollerblading, and swimming from sun up to sun down.  I came in for lunch and water breaks, but I was allowed to be a kid.  I wonder how it would have been different if my parents hadn’t let me get all that wonderful exercise throughout my childhood. I also wonder, if I had been born in today’s day and age, would I have been playing video games instead of playing outside?

I was also born at the right time.  When I came into this world, CF was advancing and research was being completed.  I was fortunate enough to start on pulmozyme when I was very young, and I was lucky that the vest came out when I was 8 or 9.  I was one of the first people to have it and it helped tremendously as I was getting too big to lay on my parents legs while they beat on me.  I have seen so many medications come into the CF pipeline, and the way CF is treated has completely changed. I am so blessed to have seen all of these medical advancements, and I can not wait to see the other advancements still to come (like the vertex drug that I am very excited about).

Even heading to the college I did and meeting my now-husband has greatly impacted my CF life.  I am so grateful that he has such a caring heart, and a dedication to helping me fight this disease.  He works to provide us with income and insurance. He makes me compliant with my treatments, and he puts my health first all of the time.  He happened to get a job close to both of our families, and still close to Chicago. Had he chosen a job somewhere else, I would be at a different CF center.  Had he not graduated a year early, he may not have gotten a teaching job, and we may not have been blessed with the wonderful insurance we have now.  I feel like I can never thank him enough for his continuous work and dedication to ensure my health. He is a blessing, hands down.

Needless to say, I have been extremely blessed in my life.  This blog could go on and on, but these are some of the top things I think about on a regular basis. If even one of these factors had changed in my life, I don’t know that my lung function would nearly be as high as it is. I am so grateful for my parents, my CF center, and my husband. They are all incredible allies against this disease, and they have helped me more than I will ever be able to realize/thank them for.

Clinic Day

Happy Thursday everyone!

I sincerely hope that everyone had a wonderful Thursday and has a very blessed Friday.

Now, to talk about my day up at the clinic.  Today has been one of those days where the rain takes turns between coming down in buckets and lightly misting over everything.  During our time driving up to Chicago and back, it was thankfully mostly misting with only one incidence of bucket-pouring rain.  In addition, the traffic was horrendous. We live about an hour southwest of Chicago, but we spent two hours in the car this morning. Neither rain nor traffic make me very happy when driving, so I was stressed on the way up.  Thankfully, we made it there safely and my doctor was still able to see me.

I went in and immediately was weighed in at 115.6 (two months ago on their scale, I was 113.1, so I was very proud of this weight).  Next, my PFTs were done by someone other than my normal respiratory therapist. That’s always a bite, because Patty makes me blow harder and coaches me more than the other girl did this morning. Regardless, my PFTs were 83% which is 2% up from where they were and right around my baseline. This made me really happy, but I still want to get them higher.

Then my nurse practitioner, Penny, came in (I did tell her you said hi, Colleen! She says “hi” back! 🙂 ) to see me.  I love Penny. She is amazing at her job and I am so grateful that she is at my CF center.  Two nights ago, I had a scary situation where my heart was totally arrhythmic. It was beating around 160 and in a totally funk rhythm.  When I shared this information with Penny,  she told me not to worry about the heart situation unless it happens again, but I think we are both leaning along the lines that it was related to the Levaquin.  If it happens again, I’m to go right to the emergency room and let them capture it on an EKG.  At least we have a plan, which makes me much happier about the situation, which had totally terrified me two nights before.

We did make two changes right now for my treatment plan.  The first change is that I will be doing hypertonic saline twice a day, instead of once. I have had better luck coughing up sputum with the hypersal, so hopefully this will help improve my lung function.  The second change we made was regarding my insulin. I shared with Penny how frustrated I was with CFRD and she went on to explain how different CFRD and how each individual case is different as well.  So, when I explained my 3 hour highs after dinner (even with insulin), we decided to try taking my insulin after dinner rather than before dinner. This should hopefully cover the 3 hour spike that I’ve been having.

Overall, my CF appointment went amazingly well, and I’m so blessed that my lung function is back up to 83%.  I also managed to get a flu shot today, see my ENT, and got my yearly lab work done (6 vials of blood, yay)! My ENT said that my sinuses show that I had a sinus infection, but they look like they are doing better. That’s definitely a good thing!  I’m so blessed, and so grateful for my positive appointments today.

A really hectic week

4 days without a post is way too long.  Unfortunately, I just haven’t had much time to write.

This past weekend and this whole week have been extremely busy and stressful.  I’m in need of a break.

I don’t really have time to get into details at this point, but I wanted to just let everyone know I have a clinic visit tomorrow. I’ll be seeing my CF doctor and my ENT.  I’m hoping for my PFTs to be up, but with being sick so much, I’m really doubting they will be.  I have been increasing my treatments though, so there’s still a possibility.  As long as I keep them in the 80s, I’ll be happy.

I hope everyone has a great rest of their week.