Lessons Learned ~ A Look Back at 2010

Wow, 2010 has been quite a year. I've been reflecting a lot the past few days, as this year comes to a close. This was a year full of learning new things for me...new things about my body, new things about my disease, new things about the meaning of friendship, new things about faith and new things about love.

I have learned what my body needs to thrive. At the beginning of the year I was working out 5-7 times a week without fail. I pushed myself to the limit. I worked out when I was tired and sore. I worked out when I was sick. This was great for my muscles, but wreaked havoc on my lungs. My PFT's were the lowest they have been in my life when I was working out the most. When I started my latest treatment protocol in September I made a deal with myself. I needed to cut myself some slack. I needed to not push myself harder than my body was telling me it could handle. Sometimes, I just needed to rest and heal. Throughout my treatments there were 2 weeks that I never got to my workout class. There were several weeks that I only went once. I never pushed it and if I was tired I quickly made the decision to skip. I think I made the right choice for my body. My PFT's increased by 11% over the past 4 months, to a number I haven't seen in more than 5 years! I am back to trying to work out 4-5 times a week, all while making sure to listen to my body first and foremost. I think my body and I are starting to speak the same language. I will no longer push my lungs to the point of exhaustion.

This may be good or it may be bad, but I have learned a tremendous amount about Cystic Fibrosis this year. I learned tons about mycobacterium of all sorts from discussions with my health care team, talking with others who have it and doing my own research. So much so that I have burned myself out. When I cultured H flu in November I read a couple paragraphs about it and left it alone. After my appointment a couple weeks ago I found out that I cultured MAC, a new yeast and another bacteria that I never even got the name of. I was told not to worry about any of these latest bugs. It's not really my nature not to worry, but I am happily taking that route this time. I have reached information overload. I am feeling very well, my PFT's are up and I am in the maintenance phase of my treatment for the next 9 months. I have made a conscious effort to live more and worry less about what is growing in my lungs. Maybe that will be my New Year's resolution. "Live more...worry less"! Not an easy task for a neurotic like me. However, as long as I'm being closely monitored and I trust my health care team, I don't see why I have to focus so much on some stupid little bacteria. I'll let you know how that goes!

I learned so, so much about friendship this year. I received an amazing amount of support from many friends that I have never met...those who have walked this path before me. People who knew what it was like to live in this skin. I'm not certain what I would have done without the support and love of these kindred spirits...you all know who you are!

I think the biggest lessons learned came from my real life relationships. I feel like I became intimate very quickly with the idea that difficult times allow you to learn who your real friends are. I can freely admit now that I needed help. I was really, really hurting, overwhelmed and scared. I went from being someone thriving with CF, to someone desperately trying to understand where it all went wrong. I tried to put on a happy face, for everyone else's sake...mostly for my kids sake. I had a few very dear friends who saw through this facade and rescued my spirit...whether with soup (Cathy), weekly cards/gifts/phone calls (Lynn), with opportunities to vent and a HUGE hug at just the right time (Elizabeth) or with frequent emails from a neighbor asking what I needed (Alan)...among other beautiful friends... I will never, ever forget their kindness. I have learned that sometimes a small gesture when someone is hurting goes a very long way. I am going to work really hard to try to model myself after these truly remarkable women (and one guy) who made my world a little less scary.

Unfortunately, I also learned that when you are really sick several people that you think would be able or willing to lend a helping hand completely disappear. People I would have considered friends for several years pretend they have no idea what's been going on with my health. I know, I know...people have busy lives. Yet, sitting on this side of the fence I can assure you that the absence of a phone call, email or note felt like a slap in the face. At the same time, although hurtful, I am glad that I had these experiences. I would much rather surround myself with genuine people who can see beyond themselves. Especially, since I am trying hard to practice this myself. It turned out that this year was a great exercise in plucking out the true friends from the bunch.

I am a firm believer in "to each his/her own" when it comes to religion, faith, spirituality. You can believe, not believe or believe in a Higher Power that is different than my God...I'll still like you :-) I don't think everyone has to believe what I believe. I was raised strictly Lutheran and was sent to small Lutheran schools up until college. I believed, I'm just not sure in what... This year I found my church home. I found a soft place to land. I am learning a lot about faith and community by being a part of Heartland. For this I am thankful!

Love. That is how I would describe this holiday season. I felt it more deeply this year than any other. Love for my children, my husband, my family, my dear friends... I found myself so overwhelmed with peaceful and loving feelings over the holidays that I just wanted to freeze time. My friend Jenny was in the hospital just before Christmas and she wrote of

her gratitude for life and love in her beautiful post... I Came Here to Live . She hit the nail on the head with this one. Yes, this is how I feel! It's a must read!

My family went on our yearly trip to our cabin in Hocking Hills just before Christmas. With 3 kids, sometimes too much togetherness can be overwhelming. This year it was just right.







Everything about the holidays seemed just right for us this year. I have never felt more love and I have never felt more loved.

Here's hoping I don't need to learn nearly as much in 2011!!!
Have a safe, healthy and happy New Year!

A Final Gift for Jill

I was very surprised to receive a Facebook email from my friend, Jill Svancara, a couple days ago. Jill died of CF in July during one of my hospital stays. Having seen and communicated with her one day and hearing of her death the next shook me to the core. Read about my thoughts regarding Jill's struggle and death in my post, Breathe Easy, Jill...

It turns out that Jill's husband wanted to communicate with me. He sent me the email in Jill's name. His message was very heartfelt and touching. He has been following my blog and asked if I could share an important message from him. I know that Jill would be proud knowing that even after her death, Clint is still working hard to raise awareness about the importance of organ donation. Clint's message is below:

A Christmas Gift for Jill


This Holiday season brings a change for my family. This will be our first Christmas without Jill.
Jill was a daughter, a Mother, and my wife.

In July- 2010 Jill died while on the waiting list for a double lung transplant, she was forty two. You see, Jill was born with Cystic Fibrosis, a genetic disorder that particularly affects the lungs and digestive system. Cystic Fibrosis is a disease that affects about 30,000 people in the United States. Years of lung damage had brought her to the point where she could no longer function without a new set of lungs.

Each day about 18 people die while waiting for the gift of life, unfortunately Jill was one of those people.

As many of us celebrate the birth of Christ, we know that his birth marked the beginning of the Christian religion. In his death, he gave us life. Shouldn't we follow this example from the man we called Teacher. In the unfortunate event of our life ending, we can and should give life back.
In Ohio about 50 percent of license drivers are registered to be organ donors. It only takes a moment to go on line http://www.donatelifeohio.org/ and register, or say yes when you re-new your drivers license. Most States have Organ Donation Registration on line, or you can visit http://www.organdonor.gov/ for more information. For parents, I encourage you to explain to your family the importance of this gift, and what it means to so many.

Please, I ask that you find it in your heart to give Jill this Christmas gift that will cost you nothing, but is priceless - become a registered organ donor. We cannot live for another person, but we sure can give life to others- but we must make that choice. While Jill faded, she gave the only gift she had left to give, and that was HOPE. Please accept her gift of HOPE, and return the gift, by becoming a registered organ donor.

Please e-mail my message to your trusted family, friends, and work associates – Lets use the power of the internet, or read it at your church, or maybe post it on a board somewhere. My hope is this Christmas we can get as many people as possible to become registered organ donors......that is the only gift I can now give to Jill – Hope for others. Will you help me?

Thank You, from the bottom of my heart!
Clint Svancara
Bay Village, Ohio

Top Ten Reasons I'm Thankful for Dr. Dazzle

It's Thursday again. That means it's time for Thankful Thursday! Today I am Thankful for Dr. Dazzle. Here are the top ten reasons why:

10) We graduated from high school the same year. Yep, both from the class of '93. It took a while to get used to the fact that my doctor is a "young" as I am, because I am young...right?

9) We like much of the same music and we both have small kids, so there is never a lack of things to talk about after we finish talking about blood, snot and poop.

8) One of his little patients told him that he's cool, because he has good hair. I agree!

7) He is a perseverater...in that he perseverates. When a new symptom arises he mulls over the pro's and con's of the next move. You can actually see the wheels turning in that little head of his. Sometimes he thinks aloud and talks to himself. It shows me that he really puts a lot of thought into my care.

6) He is super duper aggressive in his approach to CF. Since I started seeing him in August my PFT's have risen by 10% from the baseline that I sat at for a couple years. That was lung function that I thought was gone forever. Today he told me not to worry much about the new MAC that I cultured. I am being treated for it now. He said that I will culture lots of bugs over the next 60 years. We'll beat them as they come. Yippee!

5) Dr. D ALWAYS emails or calls me back in a VERY timely manner. I appreciate this immensely, because I am one of the most impatient people to walk this Earth.

4) He doesn't treat me like I don't know what I'm talking about...even though I often don't know what I'm talking about. Basically, he doesn't treat me like I'm just a dumb patient.

3) Dr. Dazzle is both realistic and positive. He tells it to me straight, but then gives me the plan of action. When I was struggling with what to do with regards to the m. abscessus he told me that this was a very serious bug that is often responsible for very serious lung damage and sometimes death. However, we caught this early enough where we can treat, suppress and possibly eradicate this bug for good. I then got an email detailing the treatment plan and all potential side effects, along with what we were going to do monitor the side effects.

2) Dr. D texted my lab results to me on a Saturday during the Ohio State vs. Michigan football game. Seriously! My lab results were more important to him than that game! I have never gotten a text before that detailed my white blood count, platelet count and my last culture smear result...along with telling me to enjoy my weekend... It was good stuff!

1) He listens to me and actually hears what I'm saying. He remembers what I like and don't like, along with my thought process and he takes in all into account when offering a plan. I think we have a true partnership when it comes to my treatment plan. This is what I appreciate most!

It was really difficult for me to choose to change Pulmonologists over the summer. I was scared and nervous about what I might get, even though I knew it was time for the change. I truly feel like I've won the Pulmonologist lottery on this one... Yeah me! On this Thankful Thurday I am ever so thankful for Dr. Dazzle!

Bittersweet Appointment

Today I finished my IV's. I had a clinic appointment and got my PICC pulled! Sweet relief! Today was 3 1/2 months in the making...the end of phase one of my treatment of Mycobacterium Abscessus (I am a HORRIBLE speller...and realize that I have spelled this wrong almost every time I've written it over the past several months...oops). The plan going forward is to continue nebulized Amikacin every other month for at least a year. I will continue the oral Zyvox for one year and I will continue the oral Azithromycin for life. I can certainly handle this plan!

I anticipated that I would be jubilant after today's clinic visit. I imagined that I would have stable PFT's, the m. abscessus would be gone and I would return home to my normal life. I knew it wasn't going to go as I imagined when the first PFT I blew was down 6% from last month. After three tries I was able to improve, so I actually only had a 3% decline overall. Not horrible, but I expected further improvement after all of the blood, sweat and tears I put into this treatment plan. Yet, it was not to be today.

Then I headed into my appointment with Dr. Dazzle. One of the first things I asked was about my last cultures. I really wanted to know if the H Flu was still present in my culture from last month. The look on his face when I asked told me immediately that all was not well with my cultures. I have not cultured m. abscessus since September, about a month after I started my treatment. This is great news! So what's new? I now can add Mycobacterium Avium Complex...also known as MAC...to the list of bugs living in my lungs. There must have been a buy one get one free deal going on when I contracted my mycobacterium. MAC is common in immunocompromised people, especially AIDS patients. It also tends to like living in the lungs of people with CF. This avium strain derives from birds. I don't even like birds!!! I guess it can also be found in dirt, dust and water. It is not as destructive as the Mycobacterium Abscessus can be, so it is often not treated until it progresses. This MAC was discovered after the full eight week examination of my late September culture. Dr. Dazzle thinks that the drugs I have been on over these last few months should have suppressed the MAC.

Yet, I'm bummed. My last 2 appointments have resulted in culturing 2 new bugs. This MAC is another one that will never go away completely. It can only be controlled. I did everything right. I have worked so hard all fall to get my lungs in tip top shape. In spite of my efforts, I still lost some lung function and picked up two new bugs. Today I learned that CF has a mind of its own. There are aspects of it that I can NOT control, despite my best efforts. Piss off CF!

Dr. Dazzle and I chatted a bit about my Brochiectasis. Mine is pretty much all in my upper lobes. My upper left lobe is the worst. That damn upper left lobe has been a thorn in my side for a while. I also met with one of the research nurses. They want me to participate in a quick one day study to test out a new way of doing Nasal PD's. It will involve getting another PFT, a sweat test, a nasal PD and nasal scrapes. So I'm heading out to the hospital again tomorrow for another all day round of procedures, this time for the sake of research. I'm bummed that I don't qualify for the Vertex study :-( Yet, they have a phase 3 Spireva study that I will start in January. I was involved in the phase 2 version of the same study.

Basically, I'm a bit frustrated that it always seems that there has to be some bad news to even out the good. I am going to work on focusing on the fact that I feel good and I am PICC free!!! I am heading out to a celebratory dinner with my family! I did 3 1/2 months of IV's without completely losing my mind... For this I think I deserve some sushi!

If you heard REALLY loud music and lousy singing coming from a car today, it was probably from me. This song makes me feel GOOD and represents how I feel about the end of this era!

Thankful Thursday

I did a few Thankful Thursday's a while back, but fell out of the habit. Ronnie & Mandi just encouraged everyone to start again...so here I am writing on a Thankful Thursday!

Today I am thankful for soup.

It's the little things, isn't it? Today I spent the morning with my friend Cathy Hawk, a full-blooded Italian, learning to make pasta fagioli. We had a great time and I picked up some wicked soup-making skills! My friend Robin Davis joined in on the fun too! I love these ladies!!!

Even more important than the soup, I am thankful for Cathy's kindness over this past 4 months during my IV treatments. Cathy is a newer friend. I just met her at the beginning of 2010. Our girls were in Gymnastics together, then we found out that we went to the same work-out class. When Cathy found out about my illness from my blog she said that she didn't know what to say, but she knew how to make soup, so that would be how she would take care of me. Cathy kept up with my blog. Every single time I had a rough day or a turn for the worse I got an email from Cathy telling me that soup would be delivered the next day. It ALWAYS came at just the right time...when I was really down and out. Cathy took care of me. I will NEVER, EVER forget her kindness and love. I get teary thinking about it. I'm not sure I can ever repay her adequately.

So today, I am thankful for soup...Cathy's soup!

It's a CF Thing...

Over this past year and a half I have "come out" of the CF closet. My family and closest friends knew about my illness, but many of my acquaintances or co-workers had no clue. It was quite easy to hide. Or, if they knew, they assumed that it must have not been so bad since I "looked" fine from the outside. This past 6 months of hospitalizations and almost constant IV treatments probably took some by surprise.

I have found that some people are still confused about my illness, since I still look the same on the outside. I think it's so easy for people to understand that someone is sick when they see outward proof of an illness or aggressive treatment. Much of the impact of CF is internal. So, I wanted to share some of the outward physical manifestations of Cystic Fibrosis, just to raise awareness.

Cough: A CF cough for most is very congested sounding. A coughing fit can last several minutes. Most people with CF cough every single day...I do. Some people with CF cough so hard that they open up a wound or blood vessel in their lungs and can cough up large amounts of blood. This is called Hemoptysis.

Salty Skin: In the middle ages in Europe they were informally diagnosing children with an unknown disease, simply based on salty skin. They used to say, "a child who tastes salty from a kiss on the brow...is hexed and soon must die". The disease that they were talking about was CF. My sweat is salty. I look like I have frosted skin when sweat dries on my face. Ick...sometimes it even burns my skin and eyes. On a positive note, I'm sure it exfoliates my skin at the same time!

Clubbed Fingernails: Due to a lack of Oxygen, most people with CF experience clubbed fingers. The nail beds and tips of the fingers are larger than what's considered normal. My pinkies and thumbs are OK so far, but my index, middle and ring fingers are clubbed...though not severely.

Barrel Chest: When people have illnesses that cause a chronic cough, they can actually change the shape of their rib cage. The rib cage takes on a more circular shape, then it's normal oval shape. This sometimes occurs in people with CF. I am pretty certain that this symptom doesn't impact me yet.

"CF Belly": I kinda made this one up... I haven't seen anything written on this topic, but I have spoken about it with several of my girlfriends with CF. That means it's definitely true! People with CF typically have difficulty keeping weight on. The CF pancreas does not digest fats. When the pancreas is deficient, it's called pancreatic insufficiency. CFer's who are PI take enzymes so that they can digest more of the foods and nutrients that they ingest. I am pancreatic sufficient. My pancreas still digests some of the fat and nutrients I take in, however not all of them. I am just not at the point yet where I need to take enzymes.

(Nope, this is not MY belly)

CF patients are encouraged to eat a lot of very high fat food. I have no problem with this part of the disease! My CF doctors have also encouraged me to keep a little layer of extra fat stored on me, since when I get sick it will melt away. Mission accomplished on that one! However, when us CF ladies get together we often feel the need to compare our CF belly's. Many of us have a similar body type, including skinnier arms and legs, along with the 4 month pregnant belly look. I'm sure the belly has to do with digestion...I don't know. I just know that no amount of crunches are going to flatten this girls CF belly :-/ I want to hear from my Cysters out there... Any of you have the "CF belly"?

A little health update. Not too much has changed in the last few weeks. I am still on the IV and nebulized Amikacin, along with the oral Zyvox and Azithromycin. My white blood cells and platelets have been behaving. I have a clinic visit next Wednesday, at which I will have my PICC pulled. No more IV's after Wednesday! Whew!