What I Wish People Knew About CF

I am a member of Cystic Fibrosis forum that strives to bring a sense of community, realness and positive thinking to those of us with CF and our beloved love ones. A while back the question of what we wished people without CF know about CF or could understand better was proposed. At first I had a laundry list of points and thoughts but then I withdrew from the question entirely thinking it was too complicated to even begin to answer.

As time has gone on that question keeps coming to mind. It flares up when I think that someone should know what I am talking about and not look at me like I'm the idiot. Which neither of us are, I just think there is so much and too few words. I feel like it will never really be understood by those without CF, but that they'll only be able to related thru compassion, empathy and love.

We all know what its like to experience a cold, many know what its like to have a daily routine of medications, many know what is like to face a doctor who gives you statistics on how long you have to live, many know what is like to walk thru life being imperfect in pain with no cure and many know what its like to face astounding medical bills. But to know what its like to have CF, is like trying to know what its like to be another person all together.

I want to be able to education my readers, friends, family and the entire world. I want to give you something that your brain can rap around. I want to paint a picture without making it look hopeless but even that is a daunting task that I think only a lifetime of educating oneself on CF will accomplish.

But I can try to pin point a few things I and other CF'ers wished people could understand better......

• Minor colds, or illness's could be life threatening and please take me seriously when I ask to be notified that your feeling "under the weather" so that I can bow out.

• That not all CF'ers are the same. CF affects each person differently and manifests itself differently from patient to patient. We are not cookie cutters. We are unique cookies, some of us have 3 chocolate chips while some end up with none.

• Taking care of myself is a full-time job with no pay, no benefits and no prospect at future employment. No joke. But most of us have to really seek employment to pay for our medical bills and fear losing SSI/SSDI if we are gainfully employed. So, really, we have two full-time jobs. 

• Our life expectancy isn't 16 anymore. We have fought hard and we have pushed that number up into the mid to late 30's!!!

• CF is our WHOLE life. We don't get better, we never go into remission and we never get a break. EVER. If we do its because we have died.

• We pass gas and can't help it. Many CF'ers are plagued with having to take enzymes to digest food which can't break down the fats and causes massive stomach pain. We are sorry for this and we know its very unpleasant for all who happen to be around. Sorry a billion times over.

• Wish it was viewed as a "lifestyle" disease instead of a lung disease. Because CF is not a lung disease it's a disease of the cells and it affects far more than just our lungs.

• We struggle tirelessly to gain weight. Many of us have G-tubes to get extra calories. We hate hearing that you would trade being heavy or needing to lose a few pounds for CF. Take my word, you would not.

• Just because I have CF doesn't mean my offspring will have it too.

With all that being said, please join the conversation. What would you like to know about CF. What things have you thought "I wonder why, how, when.........." The above is simply from mine and others with CF's prospective based on what people have said to us, asked us and non-verbally communicated to us.

Just curious about what's floating around in your head!

~Doodlin'

Awareness Opportunity

Anyone remember that old American sport called Baseball? Baseball used to be a staple on the radio and later on tv in most homes around the US. Many still enjoy a ball game in their pass-time while others still have a die hard obsession with it.

Whether your a die hard fan or are just a person who glances at the final scores every once in awhile the CF community could use your help.

Ken Rosenthal of Fox Sport Baseball could be wearing a 65 rose's bow tie to bring awareness to Cystic Fibrosis. Please follow the link below to "like" the photo of what the 65 rose's bow tie will look like. You can only vote once, so please pass this on to your friends for a chance to vote too!

Maybe you could host a game day party and get to know baseball again and to find out if the 65 rose's bow tie made it on the big screen.

65 ROSE'S BOW TIE

Thanks for helping to bring CF into the spot light. Helping make CF stand for Cure Found!

~Doodlin'

My Shoulders Can Hold No More

I use this blog as a way to get thoughts out of my head that may be something other's can use as they walk the maze of life with a terminal illness. Most of  All of the writings are about me, whats happening with me, how much I am suffering or how great something in my life is or was. Tonight my shoulders can hold no more. I must unload my burden and ask for help.

Today, I am over come with grief. My grief is not about me its about all the children suffering in our world. In our backyards, yet so many of us just sit by the side lines and do nothing. So many children suffer so we can have. So. Many. Children.

I came across information about child labor and chocolate while surfing facebook, I have heard this before but like millions of other self-induglent individuals I brushed it off. Well, today I felt a sharp pain in heart for having brushed it off. I feel guilty that I continued to fuel the monster. Today I take a stand to stop this ridiculous suffering. Seriously! Today I researched what chocolate to buy and found a nice list at Stop Chocolate Slavery.

After I had committed to buying only child-labor free goodies I was once again smacked in the face with starking realties of the extent of suffering children go thru. Invisible Children made a powerful video:


25 Recap Video from INVISIBLE CHILDREN on Vimeo.

After watching this I had tears running down my face. I am not just talking about children in far away lands but look in our backyard. Child Welfare does a nice job giving us a plethora of information about US orphans.

I know I alone can't change the world but I can start a movement. I can help be a voice to those who don't have one or rather must suppress their voice.

I know that you can't change the world alone but you can do SOMETHING. Whether it's being cautious of the products you purchase, being silent for 25 hours, become a foster parent, or simply write a blog post for billions to see. YOU and I can do SOMETHING. Will you take a stand with me?

The children of the world's shoulders can hold no more.........

~Doodlin'

Notice of Continuing Disability Review

I have over the years felt like the disability benefits topic has largely been swept under the rug. Doctors and financial advisors don't talk about it, patients don't talk about it, parents of patients don't talk about it. Maybe they do and I am just missing the conversation but seriously even when I have been struggling to pay for medications and/or treatments no one brings it up as a possibility. The only reason I know about it is because my mother collected SSI for me after my dad passed away when I was 15. Essentially it is drawing his Social Security benefits for the support of his disabled child (me). Our case worker at DHS helped my mom through the benefits maze and found that it might be possible for me to collect disability upon turning 18.

Well, I being a stubborn soul didn't think that was necessary and that I could work just as hard and just as long as the next person. WRONG. After lots of missed time from work and needing supplemental health insurance we looked in to it again when I was 20. In 2001 I was awarded the ability to draw Social Security benefits in the form of disability. This did not come easy. There were attorney's, visits to physicians that Social Security had appointed along with medical data collection from my doctors. My medical file is seriously a room full. In the end Social Security declared Cystic Fibrosis to be a disability that hinders one's ability to support themselves.

I still, after, 8 years of collecting the benefits feel weird about it. In fact, I really don't tell the world (until today) that my income largely comes from the benefits. The biggest reason of having the disability benefits is that it's linked with Medicare and other medical benefits, like hospital coverage. Without the supplements I can't even begin to think about what kind of medical care I would be getting. No joke.

Every so often I get a Notice of Continuing Disability Review in the mail from Social Security. This time they are looking as far back as 2006 to determine if I am still disabled and still eligible to receive the benefits. This process always makes me nervous. I don't know who is reviewing my case, what their credentials are or if they even have any idea what CF is. It would be devastating to loose the benefits. I wish there was some sort of tracking system that could show Social Security what diseases have been cured and what diseases still have a death sentence attached.

I do want to make a point that I don't rely completely on the benefits. I do give back to the benefits pool by working as much as I can when I can. Not that I owe anyone an explanation, I mean, I wasn't in an accident caused by my drinking driving leaving me disabled. I have no control over it, I had no say nor did my parents at that time.

Furthermore, if your a cyster or fibro or parent to one you might want to look into your state's Social Security benefits programs. They were created for a reason. There is no shame. Shame should be placed on the pharmaceuticals companies banking millions off drugs you need to stay alive, shame should be placed on insurance companies for turning patients away when they need life-saving treatments or surgeries.

Notice of Continuing Disability Review is still pending........

~Doodlin'

Release and Home Healthcare

As Saturday came and went I continued to improve and regain strength. One thing that happened was that my red and white blood cell count dropped to a concerning low. They believe it was another affect of the Zosyn allergy but couldn't be certain so retesting had to be done on Sunday and my going home hinged  on what the tests revealed. Early Sunday morning another blood draw was taken to the lab while B and I waited to see if I could go home.

Going home would entail continuing my IV therapy under the supervision of Home Healthcare. This is a benefit that is provided to me thru my Social Security benefits, thank goodness at very little cost to our family.  The HH nurses come out to 'teach' the proper techniques for infusing all my medications as well as to ensure proper sterilization is being done. There are many infections that can occur when having a Picc Line and not following all the necessary precautions. Things like hand washing, drying hands with paper towels instead of dish cloth, cleaning the Picc Line cap with alcohol prep pads for 30 seconds, etc.

Around 1pm the test results had come back with no change. The cell counts were still down and the doctor gave us our options and what each could possibly mean for us. One option was to go home, repeat the blood work on Monday and depending on those results re-admittance maybe needed. Should I be re-admitted I would be looking at having injections to boost my bodies ability to produce red & white blood cells or worst case scenario a blood transfusion.

B and I decided to go home. If they didn't feel those treatments where needed now then I wanted to go home even if it was for only 24hrs. Upon getting home around 3pm, it was time for my first IV doses at home and as promised my HH nurse arrived just minutes after we did.

We quickly converted my kitchen table into a small IV station and began my training. Since I have been doing HH care since the early 1990's I am pretty secure in my ability to carryout the treatments. However, over time things do change therefore I need to be caught up to speed. The HH nurse was there for about 1hr and would be returning the next day for the blood draw.

IV Station 

My medication schedule is Tobramycin every 24hrs (3pm) and Meropenem every 8hrs (4am, 12pm, 8pm). This is in addition to all my regular treatments. It's a lot to do, its a lot to remember but its completely totally worth it to be home. To eat dinner with B, to get up in the mornings with B before he heads off to work, to just simply be home with my little family is sooooo soooo much better than the hospital.

Tobramycin (tall bottle w/ light blue top) Meropenem (small bottle w/ dark blue top)

These bottles are super cool. Instead of bag of fluid like most people are probably used to seeing, these have a rubber ballon of sorts that is filled with the medication. When it's released the pressure forces the infusion of the medications. I have to say these simple little things make life so easy. I can wear a sweat shirt with a front pocket and no one knows I am hooked up. I can even put them in my pants pocket if the pants are loose enough. This allows for me to do what I want. Go to the grocery store, fold laundry, do yard work..... all because there is no pole needed to elevate the IV bag but rather a pressurized balloon.

Tuesday morning the blood test results came back that showed a small improvement. Yes! The plan was to continue daily blood draws to ensure that things were continuing in the right direction and for me to continue all my medications for a total of 14-days. I have a scheduled doctors visit on Friday 9/23/11to find out if we can stop the IV's or if I need a few extra days on.

Today is the day. I am so hopeful that I can reclaim my kitchen table, I can reclaim my left arm and shower without holding my arm above my head to keep it dry. I am hopeful that today, as my Nana says, my batteries will register as fully charged!

~Doodlin'

Allergy = Hospitalization Day # Dos

I am happy to announce that hopelessness didn't consume me entirely!

As the night wore on and I realized that I was in for the long haul with no sleep and nothing from home but my cell phone, I decided to utilize my Facebook application. Thank goodness. I put one post about my dilemma out there only to get 29 comments. This may sound ridiculous but it kept me in the game, each time a new comment was posted my phone would ding announcing the news. That ding became a sweet sound of reprieve. I was taken away to FB land to read something that was encouraging and heart-warming. Thank you all.

By about 4am my phone battery had died from all the use and no charger but my CF doctor came in that morning unusually early because of all the patients in different hospitals that he needed to see. I was beyond thankful. During our discussion about the nights events, we both felt that changing the Zosyn to Meropenem was what absolutely needed to happen as it appeared that I had developed an allergy to the Zosyn.

This is not good news. The changing of medicines, yes. The allergy, no. There are only a few medications that Pseudomonas is sensitive to, meaning that can battle the nasty stuff. I now am allergic to  two of those precious medications.

The nurses immediately began to infuse the new drug and I slowly started regain normalacy. The vomiting stopped immediately, although I was left with no appetite for most of day. The no appetite thing had nurses a bit on their toes since I need approximately 3500 calories a day. The use of my feeding tube was halted because the hospital didn't have a particular connector tubing that my MIC-key button (g-tube) required thus zero caloric intake for over 12 hours. B would have to bring the proper connector up later that day. I still could not sleep. All the drugs that were given to help ease each symptom left me in a haze. I would close my eyes, toss and turn, fluff my pillows but sleep would allude me each time. My mom came up sometime in the day light hours of the morning, she came in tow with a bag that B had packed me of all the stuff I wanted from home. In my exhaustion I really wanted nothing to do with most of it besides the phone charger so that I could update my dear and loyal FB friends as well as return the 20+ text messages. My mom stayed the entire day, she simply sat played on her new iPad toy by my bed as I desperately tried to sleep. We would spark a conversation here and there but not much. I really really really wanted to sleep. That's what mom's do, they sit by your side with no expectations to be entertained.

Sleep is a very allusive function while in the hospital under the best of circumstances. In the hospital that I am typically admitted to they do 'purposeful hourly rounding' as the sign in my room to eloquently read. The nurses and/or CNA's came in every hour to take vital signs (temp., blood pressure, O2 stats) in addition to entering to administer my IV drugs, oral medications, etc. The traffic to my room was ridiculous but understandable.

Later in the evening I had a few visitors. My brother came with his two kiddos and my hubby came to stay the night. By this time I was starting to regain some strength, enough so to make a few trips to the bathroom alone and I even ate a light dinner. As night time approached I asked if I could have 4 hours of uninterrupted sleep. My night nurses were very much in favor of this. It was not the best sleep I have ever had but compared to the previous nights events it was bliss.

Thursday, 9/8/11, began with a routine admittance and was worsened by an allergy. By Friday evening I was back to the status I had been admitted for. Hoping that Saturday would show improvement and we could start to look a release date. The one thing I was worried about prior to admittance, the Picc Line, was the only thing working.

Yay, Picc Line!

Thank you everyone for all your kind words. Sometimes we don't realize the full effect of our actions and/or words. Yours helped me get thru the night, gave me the strength to not break down in tears and to not let the feeling of hopelessness consume me. I have a new respect for social media. We don't know what post will make someone laugh or cry or renew their courage.

~Doodlin'

Pulmonary Hemoptysis= Hospitalization Day # Uno

Oh, the joys of the unexpected.

Last Thursday (9/8/11) I was caring out my morning rituals as normal. Which begins by taking long list of medications, eating breakfast, getting dressed and lastly taking the dogs outside. It was a nice morning and so I decided to hang out with the dogs in the backyard to get some fresh air. During that time I had a coughing episode, which is not unusual, that produced bloody mucus. As I kept coughing and spitting. Which is highly encouraged to get the mucus up and out of the lungs, more blood than mucus started to show up. This at first was not alarming as coughing for great lengthens at a time and with great veracity can cause a few broken blood vessels. In the amount of 2 hours I had coughed up a lot of blood and began to become very concerned. Concerned enough to place a call to my doctor.

My first level of response is always to call my doctor to find out if they feel going to urgent care or the ER is necessary. Typically, a trip to either is fruitless as they really don't know how to treat such a complicated disease unless its immediately life-threatening. After a few discussions, Dr. Cohen recommended coming into his clinic to be seen.

I immediately rushed out the door to make the 45 minutes drive to his office. Upon arrival he had a preliminary diagnoses of Pulmonary Hemoptysis, which was only further confirmed after his physical evaluation. There a different levels of Pulmonary Hemoptysis, which are characterized by the amount of blood being brought up and the circumstances surrounding the current health of the patient. In my case, Dr. Cohen felt that antibiotics were necessary and since I had literally just gotten off an oral 14-day prescription of Cipro, a stay in the hospital was warranted. Ugh!

Honestly, I was not surprised. My biggest concern was that I hadn't packed anything prior to rushing out the door. You see, I have a particular set of things that always accompany me to the hospital. Books, pillow, blanket, my own pj's, sports bra (this helps when male nurses/doctors have to evaluate the lungs and with modesty), Bible and my UGG boots for walking around the halls. Nurses always get a kick out of my room, as I make it as homey as possible. I was worried about getting all this stuff. Silly, yes, but it helps ease anxieties making me comfortable when I am alone and is my saving grace during difficult times. I immediately called the hubbs to begin arranging the logistics of my stay. Hubbs works for his parents for which I am grateful. Is step-dad was able fill-in for him for the remaining part of the work day so that he could accompany during the check-in process.

B and I checked in to the hospital about 1pm. Check-in can be the worst part of the entire stay. I had to have a Picc Line placed, x-rays, blood work, etc...... I hate Picc Lines. They freak me out. I have to have to take anxiety medication for it or I cry uncontrollably during the procedure. It's really all psychological as they do a great job in numbing the area and I feel no pain. Once they have the line placed they immediately begin infusing two different anitibiotics. The first was Zosyn and the second is Tobramycin to treat Pseudomonas which are the underlying cause of the Hemoptysis.

Picc Line preparations-anyone recognize what t-shirt I am wearing?

At first dosing of each antibiotic things appeared to be going smoothly. I was a bit tired but other than that I felt pretty good. B and I decided it was safe for him to return home to get a good nights sleep and to pack me some comforts for home. My mother was going to take Friday off to be with me so that B could finish out the work week (we need the $$$, sadly). B left around 8pm to make the 1hr trek home. I fell asleep and awoke around 11pm and would not sleep again for 24hrs.

When I woke I was shivering had a fever and my body hurt. The nurses pilled on about 3 or 4 warm blankets and gave me Tylenol. The Tylenol had no affect and shortly after I began vomiting. My joints began to swell and the on-call doctor probably had no idea what to do for me. They gave me Vicodin for the pain and anti-naseau med's thru my Picc line, all in addition to my continued antibiotic regimen. The best description I can give and did give was that I felt like I was being poisoned.

The battle continued all night. All night I was shivering uncontrollably causing my muscles to ache my joints to become swollen and painful. I was sweating from the fever and I was alone! I had no comforts of home since I didn't have a chance to pack and it was in the middle of night.

Hopelessness threatened me.....

~Doodlin'