Lung Pain: The Mystery

Man, life has been exhausting lately. It's safe to say that 2017 hasn't started off the way I had hoped, nor did 2016 end well either. In December, I was hospitalized with lung pain. We started the admission off like any other stay with IV therapy, chest PT and rest. We also decided to have a bronchoscopy done to see what the lungs looked like and to "flush" them with a antibiotic rinse. I have never had a bronchoscopy, so I was extremely nervous. The idea of "flushing" my lungs was a PTSD trigger and had me thinking I'd feel like I was drowning. To be honest, it was one of the easiest procedures I've had done in a very long time. Easier than a PICC line placement, seriously!

Nothing majorly unexpected came back for the bronchoscopy. My lungs do have some scaring and diseased areas along with testing positive for Aspergillius (ABPA). Besides that, for being 34 w/ CF, they looked pretty good.

Treating the Aspergillius (ABPA) isn't as straight forward as one would think. Due to a few other medications I'm taking I'm hesitant to start treatment. I would have to stop taking my Orkambi, which is a drug I've waited my entire life to be on and the side affects during the first 3-months were horrendous. I really don't want to go through all that again. In addition, there is no guarantee that treatment will work.

That's all well and fine, but why am I experiencing this excruciating lung pain? Is it Pleuritic pain? Is it just random inflammation? Is it the ABPA?

WHAT IS IT? WHY?

The unknown is so hard for me to cope with. Being active is what keeps me sane and with this pain I can't run or do my exercise machine regularly. Heck, some days I can't even function normally because every breath is painful.

After a few days inpatient I was cleared to go home to complete IV therapy thru home healthcare. Being home always brightens my spirits. Treatment at home went smoothly and as expected. I continued to have lung pain, some days it was excruciating while other days it was hardly noticeable. On the days is was minimal I tried to get motivated to go for walk or do my exercise machine, but those days were rare.

The holidays came and went and so did the lung pain. My life was irregular, no real schedule or regime. I was drugged up on pain meds when it was intolerable. The feeling of no control is a helpless place. I began to recognize that my depression was getting worse. The unknown of why this was happening along with no outlet, no running or brisk walking, to burn off the frustration and helplessness was taking a toll.

This cycle went on until late January I woke up in the middle of the night in tremendous pain. I tried to muster through the night so that I could call my doctors first thing in the morning but I couldn't, it was too much. Hubby took me to the ER, where a CT scan revealed a pocket of fluid in my right lung. I was admitted for another stay.

The first thought was that I had pneumonia, but we sort of ruled that out since I was not exuding other  symptoms related pneumonia, like a fever; only the fluid in the lung. A plan was put in place to receive another round of IV antibiotics, along with pain meds and medications that treat nerve pain. The hope is that my body will take care of the fluid. I'll either cough it up and out or it'll be absorbed.

Here we are at present day. I'm still experiencing lung pain with no idea of why. I'm still largely depressed. However, I'm pushing though. I've start Pulmonary Rehabilitation, I'm doing my exercise machine 2x a week and I ran/walked a mile last week and will again this week. If the pain is going to be there then I have got to figure out how to work with it. Sort of like working with a co-worker you aren't fond of. It's painful at times but you just push though.

Sometimes we have to accept the pain and use it to our advantage. Yes, running is painful, particularly due to the heavy breathing. But it fuels me. It pisses me off and I push harder. CF will not win. EVER. I will make this new normal benefit me and not destroy me.

My goal for 2017 was to run a marathon. It might take me longer to accomplish but it will happen. I will not cry one more tear over the thought of giving up on this dream. I will use that emotion to propel me forward; the pace might be slow but it will be forward movement.

This mysterious lung pain may never be 100% diagnosed and I have come to accept that. I've come back to a place that is hopeful. Each day is full of opportunity to do something; run, walk, yoga, etc.

This is my run/walk last week. I was smiling the entire time!!

We can use our circumstances to hold us back or propel us forward. I want to be propelled to the farthest point possible. Here's to hope and pursuing our goals!

~Doodlin'

Back in the Saddle….sort of!

Last week, despite feeling a bit crummy, I got swept away by all the "new year's resolution" workout pics on varies social media sites. I know… I'm not immune to peer pressure! I decided to get back in the saddle, er, lace up my running shoes. I decided to run 1-mile every other day for a total of three days. 

Wow! The first run back was ugly. I mean ugly. Its amazing to me how quickly we loose our fitness level. Sure, I've been doing yoga and weights but my goodness I was not prepared for what a slap in the face 3-months of non-running will do to ones fitness level.

I hacked, gasped and down right felt like I was never gonna catch my breath. But I did….eventually. The sweat poured off me despite the fact that the high that day was only 43 degrees. Down right ugly I tell you! I did get three days of 1-mile each under my feet. I am VERY eager to get back to where I left off and feel good after 5-6 miles, even though my fitness isn't to that level I can feel my muscles wanting it. 

But it might take longer that I really want. I ended up back in the doctors office Wednesday afternoon. I just feel crummy. I'm extremely tired most of the time, a slight increase in cough and night fevers. We settled on doing 15 days of oral antibiotics with a few days of rest.

I feel like its one foot forward and two steps back but I'm determined to get my running mojo back.

Tanner and I completing our first 1-miler! He's got WAY more stamina than I and he alone is responsible for our time of just under 10 minutes a mile. He was totally pulling me along and urging me forward to greatness. Such a good buddy!

~Doodlin'

Serum Sensitivity Follow-Up

In an effort to truly determine if I'm experiencing a serum sensitivity/sickness we had decided after my Penicillin allergy test came back negative to give one of the drugs a trial run while I was "healthy" to help isolate whether my symptoms are directly related to the medication or the infection. The only way to do this was to place an IV and administer a full dose of the medication. In this case it was Ceftazidime.

Wednesday morning, I was up early and on my way to nurse treatment to have an IV line placed. This gives me the biggest anxiety. Generally, it takes multiple attempts or they are unsuccessful and refuse to try again and must bring in a specialty nurse.

Upon check-in I was greeted by a nurse who has treated me in the past. She respects my anxiety, health condition and preferences, which makes a world of difference. She placed me in a quite room and immediately hot packed the arm and hand that showed the most promise. While we let the warmth of the hot packs do their magic I read. Reading helps calm my nerves because I don't think about what lays ahead but rather I become enveloped in the characters of what I'm reading. After about 20 minutes she came back in and prepped me. In one swift poke she was in the vein, drawing back blood and flushing. Success!

After the medication was fully administered I sat for about 2 hours under observation to see if I would have any immediate reactions or an anaphylactic response. I did not. I remained hopeful that I would not react and was prepped to head home.

About an hour after I got home and settled the chills and an ache in my joints began. I knew right away this would be a long night. I took a hot bath to help ease the aches and pains and put on warm pj's. By the time B got home I was in full reaction. Upset stomach, severe joint pain and swelling along with the chills. By 6pm I was in bed trying to sleep it off. I was incredibly thankful this was just one dose and that the symptoms would ease off as the medication made their way through my system and that I didn't have to give another dose thus continuing the cycle.

Needless to say the reaction is not the infection but my body's reaction to the medication. Not what I was hoping for, however, now we know which direction to go in terms of treatment. We, doctors and I, are in collaboration on what that looks like. 

CF can be frustrating. I'm choosing to not let this frustration get under my skin but rather remain as positive as possible and trust that we'll get this figured out. I'm gonna take it one step at a time and rejoice in the small victories like; the IV was placed in one attempt………ONE!!!

~Doodlin'

Serum Sensitivity

Let's recap a bit……

September 19th, I had a PICC line placed to begin yet another round of IV's. My PTSD kick into full gear and I was overwhelmed. Thankfully, the PICC placement was text book smooth. After getting home and administering my first dose of Meropenem I began spiking a fever, vomiting and getting the chills.

I knew it was not the infection causing these new symptoms. I pushed thru the night until the next dose was due. Weird thing is, right before I started the next dose my symptoms started to ease up, which is largely why I felt it was not the infection. So, I got in touch with my doc and we decided to switch meds.

After going into clinic to receive the first dose under observation I was fine. B and I went home thinking all would flow as it should and we'd get thru the next two weeks fairly smoothly. Nope! After administering the second dose the symptoms returned.

Each time this has happened that particular medication has been placed on my "allergy" list, meaning I can't use it. The severe issue is that with these symptoms I also develop low white blood cell counts and/or neutropenia which is dangerous. This also is quickly depleting the pool of medications I can use to fight my infections, that's dangerous for someone who needs them to fight infections that left unchecked will cause severe lung damage and erode my life span.

Funny thing is that this has been happening for a few years now. While we didn't exactly know it when it began we now know we've got to figure out why my body is reacting to the medications this way. In 2011 it happened and then later in early 2013.

In order to get the medications in my system and help subdue the infection, we decided to address the symtopms with anti-nausea meds and a fever reducer. This cocktail worked for the most part until pharmacy called an told us that there is a drug reaction between the IV medication and the anti-nausea medication in where heart issues can occur. At this point, I was beyond frustrated. I now had to go get an EKG done to ensure no long-term damaged was sustained by my heart. With great relief I can tell you it did not.

At that point, I stopped the anti-naseau medication and just suffered thru the last few days of IV's. Needless to say it was a very unpleasant 3 days. The only way I know how to describe it to say that it felt like I was being poisoned.

The CF doctors and I set up a game plan to try to figure out why my body is reacting to some many medications and even ones that are not in the same family.

Game Plan:

#1) Find out if I have developed an allergy to Penicillin. Many of the IV medications are in the Penicillin family.

• This was done 11/13/13 and was negative

#2) Try to isolate the symptoms; are they truly from the medication or is it my bodies reaction to the infection

• This will be done on 12/11/13

#3) If its the medication, figure out what other medications can safely be used to help ease the symptoms (i.e. adding prednisone)

Because the Penicillin testing was negative and I showed no signs of any reaction it has been determined that my reaction to the medications is an immune reaction to either the infection or the medication. It is of a serum sickness and/or sensitivity type reaction. Finding out if I react to the medication when I'm in stable health will allow us to differentiate whether or not my symptoms are because of the infection or because of the medication.

All of this will determine if and what medications I can use in the future. I'm sort of freaking out inside. These medications are vital to my survival.

~Doodlin'

A Pick-Me-Up

I've had a wacky past two months. Some of it health related and some it is just normal life craziness. All of it combined had left me feeling overwhelmed. Two posts await editing that I've meant to publish for weeks now and honestly not sure when they'll be ready or rather when I'll be ready.

With all this feeling overwhelmed, this fantastic video puts a lot into perspective for me.

~Doodlin'

So Much Time A-wasting

Being that I've been running, errr.... attempting to be a runner for almost 2.5 years now. I've grown accustom to using a stop watch or some sort of clock to track my time. After-all tracking one's time when running is important. It gives you a lot of information about your workout or run. Things like average mile per hour should begin to improve the more fit you become. Anyways, you get the point, time is a good measurement or benchmark and can lend you a lot of information.

The amount of time we CF'ers spend doing treatments is huge. Particularly when you start to calculate it over the average life span of a CF'er. We're talking months and even years. Its crazy.

A CF'er gave a speech then turned it into a blog post about this very subject: Time. It's worth the read. 

Run, Sickboy, Run - Cystic Fibrosis and Exercise: We Need More Options!!

"Any treatment that I can take that isn’t a huge burden on my time really excites me. Any potential treatment option that I can take that can potentially “give me time back” excites me even more."

The main point (from my perspective) is that we, the CF patients, need more options that not only improve quality of life but aren't time consuming. Most who haven't been around a CF'er during treatment probably can't even begin to comprehend just how much time is used up on treatments. We (CF'ers) for the most part are willing to give up precious time for a better quality of life. In his post, he demonstrated just how much time his treatments take him by using a stop watch.

How have I never thought to do this simple experiment? I'm inspired to do it now! I'm sure his treatment times won't be too far off what my will end up being but you never know. His regime might be less extensive as mine or vice versa.

The other factor is that when we're sick (haha!), I mean when our symptoms are exacerbated the amount of time doing treatments greatly increases. With out doing the time experiment I would estimate double the amount of time.

Phew! That's a just crazy. No wonder I'm always on the look-out for new activities to do while doing treatments. I get bored. I need stimulation during those times to keep me from focusing on how long I've sat in one place puffing away on a nebulizer. I like to be busy and this stagnate time frustrates me. I think of all the things I could be doing or that need doing, yet I sit on my tush puffing away. 

I think we're still a good many years away from life without treatments. We're making amazingly fast progress but anyone who has CF more than likely has conceeded that this time is just par for the course. 

Anyone have any good ideas for activities that are not apart of the obvious like reading, tv, etc?

~Doodlin'

A Pillow Soaked with Tears.

I lay hear in bed the clock flashing 2:34 a.m. and my is mind racing. The tears are flowing down my face, along my hair line soaking my pillow. I am alone, B is in Sisters, working. Why the tears?! Cystic Fibrosis.

I have boarded the crazy train, my boarding pass has me seated in 'temporary' and I am not hoping to be upgraded. I want off. I want a refund. I will walk whatever distance. Please God please!

I am afraid. I am lonely. I am starving. I am suffocating. I hate it with every fiber of my being. I hate all it has robbed from me. I hate it for what it will rob me of. I hate that I am crying over it. Hate is NOT a strong enough word.

I want to be free of this g-tube and tubing connecting me to the feeding machine for the next 5 hours of a 10 hour cycle. I want to roll over in bed without having to untangle myself.

I want a cure. Yesterday. Until then my pillow will help dry away my tears.

~Doodlin'