Hope

I have been a horrible blogger lately. I have been a very busy bee since I started back at work about a month ago. I'm back in the groove of raising my kids, working full time and trying to manage my CF. It is DIFFICULT...but I love it!

My health is OK. January was supposed to be an off month on my nebulized Amikacin. About 2 weeks ago I asked if I could go back on. My lungs were tight and I just felt like I needed the drug sooner rather than later. I went back on and felt relief for about a week. However, the sore and heavy lung feeling is back. I contacted Dr. Dazzle and he is putting me on Doxycycline, along with Ibuprofen for the inflammation. I guess the likely culprit for these lung issues is my Staph.

So the CF world was rocked with several deaths this month. First, Geneva...then Tom...then Tina... I am so sad for the suffering that they each endured, I am so sad for the families left behind, I am so sad that the lungs they got gave out or the lungs they needed never arrived...it's just all so sad. These beautiful souls were here one minute and gone the next. Geneva was vacationing and looked so alive in October. Tom was rooting on his Packers a couple Sunday's ago. Tina was grieving the loss of Tom just hours before word came of her own death. They were so alive...and then they just weren't.

Witnessing these lives taken form the disease we share certainly makes it difficult to live in the comfortable denial that I've become accustomed to. Early death is the part of CF that I try so hard to compartmentalize. I try to pack it away in a little box and put it in the far reaches of my brain. That is, until it smacks me in the face again. The reality is that 50% of people with CF will die before the age of 37. This is such progress, but it's not quite enough for the 35 year old writing this post.

I have always set goals for myself that were just beyond my life expectancy at the time. When I reached to goal I really felt like I was beating the odds. When I was a teen I said that I would be happy to live to get my diploma. When it got to that point, I wanted more life. Then I wanted to get married and have kids. This was a great accomplishment for me! I was so happy to have created a family...but then I wanted more. Now my goal is to see my kids graduate from high school. At least that's what I tell myself... While in reality I have always wanted so much more.

Maybe this sounds selfish. I probably sound like I'm whining. I have so much and have beaten this disease in so many ways already...but I want more. There's too much living left to do. Geneva, Tom and Tina had too much living left to do.

This is what I really want...

Maybe growing old is overrated? I still want it. Lord knows...we don't always get what we want. I guess there is always HOPE...

Collateral Damage

I got a message from someone the other day that belonged to a mycobacterium forum that I visited. She had m. abscessus, but not CF. She was treated for the m. abscessus with IV Amikacin just like me. However, she wanted to warn me to be very careful with this treatment protocol, because the Amikacin ended up making her completely deaf.

Thankfully, Dr. Dazzle warned me about the grizzly side effects of each and every one of the drugs I've taken and am still taking. We got a baseline hearing and vision tests prior to beginning the Amikacin and I got a follow-up hearing test in December after having experienced occasional ringing and ear discomfort. I got the results from the December test last week. The report reads that "The only abnormality seen was a response at a severe hearing loss level at 12,000 Hz only in the right ear. " This is in the extremely high frequency range. I'm not surprised about this, because all of the ringing and discomfort was in my right ear. Honestly, though, I feel like I got off easy. I barely notice this change to my hearing. The Amikacin stays in the ears for 6 months after treatment is concluded, so I'm not completely out of the woods, yet. However, I have been experiencing far less ringing and discomfort since my treatment ended, so I am very optimistic.

This report and the message from the other patient got me thinking. For me, I would trade "some" of my hearing to keep my lung function. I guess in weighing the two, I conclude that you can live with bad hearing, but bad lungs can kill you. Sometimes it seems like CF is a real-life game of "Would You Rather".

"Would you rather go deaf and save your lungs or keep your hearing and experience lung deterioration?"

My family plays "Would You Rather" all the time, usually at the dinner table. The questions are usually silly and the answers don't have real life implications. "Would you rather eat earwax from a cat or lick between your fathers toes?" I hope to never truly be faced with this dilemma.

However, with all of the side effects and other possible things that can happen as a result of the treatments we need to save our lives, this "Would You Rather" scenario comes up a lot in the daily lives of those with CF. To save our lungs we sometimes end up hurting our kidney's or our liver. Sometimes our eyesight deteriorates and even our teeth can decay. In the case of transplant, sometimes it's a choice between diseases. It really is like treating one disease for another in some respects. The health concerns are different, but they don't diminish after transplant.

Making these "Would You Rather" decisions can be difficult. I think that some of us might even have chosen a different path in hindsight if a very negative consequence is experienced. For me, as far as the hearing was concerned, it was a no brainer. I felt comfortable that things were being monitored and that my lungs needed to be the priority at the time.

I would love to hear of any "Would You Rather" decisions you have had to make...

The Calm After the Storm...

"Worry does not empty tomorrow of its sorrow; it empties today of its strength." Corrie Ten Boom

I've been struggling a bit the past couple of days. Not physically...only emotionally. Worry and anxiety have crept in and they are making themselves cozy. I first noticed the itch of anxiety a few days ago when I looked at my fingers. I don't bite my nails, but I chew the hell out of my cuticles. My fingernails look lovely, but they are attached to bloody stumps. I have chewed my fingers raw. I ONLY do this when I'm anxious, but I don't have time to focus on the problem and improve my thought process.

Post-Traumatic Stress Disorder...it's not just for soldiers. I'm not saying that I have PTSD in its true form...it is a very serious condition. However, I think there is something to be said about the stress and anxiety that can arise after the storm settles. I used to see this all the time when working one-on-one with oncology patients. A while after treatment has concluded and the craziness settles, the patient is left feeling abandoned and alone with their thoughts. The questions start... "Did we do enough?" "Does that ache mean I've relapsed?" "What are the long-term consequences of the the treatment I received?" "What if this comes back?" "What's next?".

Then there is the searching... Google is not my friend. I have been off of IV's for a month now. These types of questions have started filling all the little nooks and crannies of my brain. Whenever I have a question I google it. I have been looking up my symptoms, comparing my case to the cases of others, I have been searching out statistics...basically, I just want answers. I want answers where answers don't exist. Mostly what I find is more cause for concern.

Last night I stumbled across the website for an organization that's sole focus is conducting research and raising awareness for non-tuberculosis mycobacterium (NTM). I was impressed, since I now possess two strains of NTM. The very first thing I read on the home page of the site was that "NTM is a devastating chronic illness". I don't know why this statement has been suck in my head since I read it. I think I was under the impression that the m. abscessus and MAC were symptoms of my CF...just a little bump in my CF road. That statement made me feel like this is an entirely different deadly condition. I already have a "devastating chronic illness" with my CF. All of a sudden I feel like I have double the burden.

I think I was blindsided last night by the seriousness of what I went through over the last 6 months of 2010. I spent a lot of time and energy trying to convince myself and others that this was no big deal. Last night, when I found an entire organization devoted to the bacteria that has infected my body it was a reality check that this is serious business. The founder of this organization has been living with NTM for 15 years and this is seen as a huge success. Does that mean most people succumb more quickly? I am thrilled that this organization exists, yet it makes it all the more real for me. Deep down I knew that mycobacterium was a big deal...I guess my searching just provided absolute confirmation.

So, what am I doing about it? I am scheduling a consult with the CF/mycobacterium guru at the National Institute of Health (NIH) in Bethesda, Maryland. He is an infectious disease physician who is one of the leading minds in the impact of mycobacterium in CF patients. This was Dr. Dazzle's suggestion. I have so many questions to ask...mostly about my future...mostly questions that have no answers... Maybe if I ask enough people, eventually someone will give me the answers that I want to hear. I see scheduling this consult as being proactive. If these bugs come back and become resistant, I want to know the plan. It gives me a sense that I have some control over this/these diseases. My records are being sent to NIH, there will be a meeting about my case, then they will call and tell me when to head to Maryland to be seen in person.

I know without a shadow of a doubt that I need to keep things in perceptive. Corrie Ten Boom survived the Holocaust. Comparatively, I am blessed beyond measure. I know this and I live this...but constant reminders don't hurt. I have been enjoying my "health", my family, my job. Life is getting back to normal...whatever normal means for a CFer. Life is truly grand! If I could only eliminate this worry for good...if I could stop waiting for the other shoe to drop...then things would be golden...

Lung Exterminator Wanted!

I have learned something very important about my lungs. I think they are very open and accepting. Although I really wish they would be a little bit more discriminating. They must have been paying attention all of those years I sat in Social Work school...learning to love and accept everyone.

Another day, another lung bug. Honestly, I have no idea how there is enough room in there for all of these germs. I now culture 5...that's FIVE...types of bacteria in my airbags. This is what I imagine is going on inside.

So let's review...

1) Staphylococcus - I have cultured staff my entire life.

2) Mycobacterium Abscessus - This is a very aggressive infection that led to the treatment protocol that I am still on.

3) Heamophilus Influenza - I cultured this in October, while I was on IV's. The IV's helped and I didn't need additional treatment.

4) Mycobacterium Avium Complex (MAC) - This was a new discovery that was shared with me in December. No additional treatment beyond that I'm getting for the m. abscessus is necessary at this point. This one derives from birds. Go figure...I don't even like birds.

5) Enteric Bacilli - This is my latest friend. Here's the scoop...

Enteric Bacilli is a gram negative rod that can grow in the lungs of people with CF and those who are neutropenic (low white blood count). BINGO...I have both. I am certain that the neutropenia played a role in me acquiring this new bug. I looked for answers about this Enteric Bacilli on google and freaked myself out. There was a whole bunch of talk about necrosis of the lungs. I also think it is related to E. Coli, which I know a friend of mine cultures in her lungs... Holy crap...literally! Dr. Dazzle always warns me to stay away from Dr. Google, as he/she tends to make people panic.

The good news is that Dr. Dazzle said I have as much of a chance of dying in a car accident on my way to work, than getting lung necrosis from Enteric Bacilli. Dr. Dazzle knows that I work from home, so that was very reassuring. He said that I got it from my nebulizer. I guess this germ just comes and goes as it pleases without treatment. Finally, a germ I don't have to worry about killing!

I am one of the 5% of adults with CF who has never, ever cultured pseudomonas. I would really like to keep it that way. I don't think I have taken all of the precautions necessary when cleaning/sterilizing my neb cups. I rinse them thoroughly and put them in the dishwasher, but I hear of people boiling them. I have never done such a thing. Since I have never cultured pseudomonas, I haven't needed to use my nebulizer all that much in my lifetime.

So, I'm looking for some advice. How do you sterilize your neb cups? Do you ever use them twice in the same day if you wash them out, or do you completely sterilize after every use? Inquiring minds want to know...

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!