Guess I'm Not One of "Those" People

When Dr. Dazzle and I first began our discussions about eradicating the mycobacterium abscessus, he told me of these people who have been diagnosed with this nasty bacteria...who received treatment...and who never cultured it again. They were able to basically render the abscessus dormant. I knew that this particular bug is difficult to treat. I knew that this bug can cause irreparable lung damage. I knew that the treatment itself was very risky. I decided to take the risk, because I KNEW that I was going to be one of "those" people that Dr. Dazzle told me about in our discussions. One of "those" people who would have nothing but positive results.

Today I found out that I am, in fact, not one of "those" people. The mycobacterium is back. I was able to suppress it the entire 4 months of my initial IV therapy. I finished my IV's in December. It waited less than 2 months to return. It looks like this is going to be one of those things I am just going to wrestle with for the rest of my life. Dr. Dazzle and I had a chat about it. He said that while we were hoping that it would not return, we knew it would be a possibility. For now, we are not going to change my treatment plan. We are now going to focus on treating based on symptoms. My PFT's are very stable, I'm not having fevers and I'm not having an increased cough. For now, we will just go with the flow.
After the phone call with Dr. Dazzle I joined my family in the kitchen to help my husband with dinner. I told him the treatment plan, saying that I will now be on Azithromycin and nebulized Amikacin for life. My daughter overheard this conversation and said, "You mean you'll even be on these medications when you're 96 years old?". *SILENCE* When I finally caught my breath sufficiently to respond I said, "Oh sweet pea, yes, hopefully I'll still be doing these medications when I'm 96 years old". Moments like these are the worst part of this damn disease...

So I'm not going to lie...I'm bummed. I feel like I put a lot of blood, sweat and tears into this treatment plan for the past 6 months, and we're right back where we started. Dr. Dazzle assures me that just because it's present, doesn't mean we didn't suppress it. This must be what it feels like to relapse from cancer. I not a big fan of this type of disappointment.

All that being said, I feel pretty good physically. That's a HUGE plus! I also have a lot to distract me from thinking too much about this crappy news. I think I'll go get myself a mani/pedi sometime this week...then all will be right with the world :-)

Clinic Update # Gajillion

I had clinic again today. No surprises meant I left a happy girl. My PFT's were stable and now that I'm on Doxy I feel pretty good. Just a little fatigued here and there, along with intermittent belly pain, but that's to be expected when on 4 antibiotics. The only thing left is waiting the few days for the culture results to come back...

One thing that I have been experiencing lately is peripheral neuropathy. This can be a side effect of long term Zyvox use. Basically, neuropathy is nerve damage that can be permanent, that is sometimes caused by medication toxicity. This is manifesting itself in me by causing intense tingling in my hands. It feels like they're asleep, but no amount of moving them around takes the sensation away. Each episode that I've had has lasted from a couple minutes to an hour, and it most often occurs in me at night. Honestly, at this point it's just annoying. Not painful at all. However, neuropathy can get very severe. It can cause debilitating pain or lead to the loss of all feeling in the hands or feet. I was supposed to have 7 months left on the Zyvox. It is a very important component in abscessus treatment. However, Dr. Dazzle wants me to discontinue the drug immediately. He thinks the danger of having to deal with permanent nerve damage outweighs the benefits that I am getting from the drug right now. Some studies in South Korea show that abscessus can be treated sucessfully with Doxycycine, Amikacin and Azithromycin, so this will be my new plan. I tolerate the Doxy well, even though it makes it torturous to be in the sun. Guess I'll have to try to be a hermit again this summer :-/

I also signed my consents for a new study I will be starting on Monday. What's adding one more drug to the mix after all? I will be doing a double-blind Spireva study. I did a Spireva study a little over a year ago, but it was just testing the reactions of CF patients to the medication. This time they are looking for evidence that the drug can improve lung function. I have 2/3 chance of getting the drug versus the placebo. This is probably the 40th study I have participated in since childhood...no joke... I am the study queen!

So all in all it was a great appointment! Now, I'm just keeping my tingly fingers crossed that my cultures show that I have no new lung inhabitants...

Is it all about the attitude?

I struggle with the notion that the only way to get through a devastating illness is through "Positive Attitude". I hear it all of the time from people, both those with illness and those who have never been sick a day in their lives. I have come to the conclusion that people often say this to protect themselves from having to deal with my emotions. Once I hear that "I've got to be positive" from someone, I will never be honest about my feelings with this person. They would see it as a failure. This person truly thinks that having emotions such as fear, anger and sadness are weaknesses. I have talked to so many cancer patients who have felt guilt for having feelings other than happiness/thankfulness and pressure to maintain a facade of positivity.

I sometimes feel this struggle when in public. Why share my burdens with others? However, within myself I have come to the conclusion that all of my feelings about my journey are OK. I am doing the best I can each and every day. I get sad...I get pissed off...I worry more than I should...I feel deep joy...I am appreciative... I feel such a range of emotions and all of them are acceptable. Maybe not acceptable to the eternal optimist, but acceptable to me.

I do, however, feel that being happy and enjoying life important. I think I am a generally positive person, if only because it's more fun to live life this way. Yet, I make room for other feelings too. I also try to never tell anyone else how they should feel.

The link below expresses how I feel about this topic... please take the time to read!

Positive Thinking vs. Realistic Thinking

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...