Friday, July 29, 2011

Compliance, Judgement & Progression

I'm taking this challenge that was presented through a fellow CF blogger Confessions of a Cyster The challenge is as follows.
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

This is so relative to me right now as I have been struggling to "manage" or "control" my CF. When the truth is I can't manage it or control it. I wish I could. I believe CF is maintained sometimes by how compliant we are, but I also believe that in some cases it doesn't matter how well you have taken care of your self this disease will take over for periods of time. My parents made me very compliant with my treatments, but they also let me skip treatments sometimes to live my life, because was the fight worth fighting for me to just be alive? No I was a child, I needed to live and enjoy the things kids enjoy like sleep overs, and camping. So as I grew into a teenager I stayed relatively compliant and have through my adulthood. Having become completely compliant in the past year, trying to re-gain some lost health.

I was recently criticized on facebook for supposedly being in denial about my disease progression, because I don't believe that what I have been going through for the past few months is, I truly believe there is an underlying reason. And I found myself defending MY illness to a fellow CFer. In his eyes I was in denial and needed to except the fact that my disease was progressing, because he had been through it and that's how it happen to him. Being in that position was weird, I was feeling like how do you judge MY CF story and MY progression based on your experience when we all know everyone with CF is so different. I hate the judging in some of the CF community! The your sick because you don't take care of yourself, or your CF isn't bad and that's why your healthy. I love to hear EVERYONE'S story's, whether they are in end stages or as healthy as a "regular" person. We all have our own story's, our own health stories, our own ways of dealing with OUR disease.

Disease progression is scary. I get scared every time I get admitted to the hospital, but I also don't let it run my life or overrun my thoughts. I do what I need to do to get past it and get home and get healthy. Do I cry when my son gets sad because he misses mommy, yes. That's why when I am home and healthy or feeling well I make every moment I can remembered and special for us. My worst fear when he was a baby was that I wouldn't live long enough for him to remember me. Did I believe I was dying anytime soon, no, but I still had those thoughts, I think because growing up I was told I wouldn't live as long as I have. As he's gotten older I know he will remember, and what I want him to remember is the times I was home and healthy, and our family vacations, and all the good stuff. Not the nights he cry's because I'm in the hospital. Living my life to the best of my ability is all I can do for him and for me. And if I miss a treatment every once in a while because we are out having fun well then so be it, I'd rather him remember that moment we were having then remember that we had to stop for a treatment. Some would argue that missing a treatment could take me away sooner, and would defeat the purpose of enjoying my days with him. To them I say, being alive isn't always living.

Not sure if I followed the "rules" but I went where my heart felt.

Sunday, July 24, 2011

CF Sucks!

For those of you who are my friends on facebook the first 2 updates are from there and you probably already know this information. But the last part is new.

After my bronc-scope yesterday I went home and was having pain all around my chest and back, I figured it was from coughing so much after the scope. They gave me ibuprofen before I left, I went home and went to bed. I woke up and all the pain had went away except in my chest on the left side. It was excruciating pain, I couldn't breath in good because it hurt so bad, so I had to take small shallow breaths, which made my O2 levels drop. By the time I got to the ER my temp was 103.1, my heart rate was 150 (normal range 60-100), and I don't know what my blood pressure was but that was high too, my O2 level was 88, my normal is around 95 and my white blood count was 30,000 twice the normal range. The speculation was that maybe my left lung had collapsed, fortunately it was not. Ultimately it was a combination of the bronc-scope irritating my lungs and already being on the verge of infection. So they have put me on 2 IV antibiotics and one inhaled anti-biotic. I am going to be here until they get the final results back from my scope, which could be a couples weeks at least. Today I feel better then last night, but I'm still having pain, that's mostly being controlled right now. My breathing and O2 levels are back to normal, as well as my blood pressure and heart rate. They did the echo cardiogram this morning to check for pulmonary hypertension, the results from that will be in later this afternoon. I'm also having a port placed either later today or tomorrow, which is a semi- permanent central line for IV meds, it takes the place of having PICC lines placed every time I come in. The veins in my arms are no longer able to handle PICC lines.

I was hoping I would have got my PORT placed today, but because my blood count is still high they won't place one because of risk of infection. They also have to have negative blood cultures for 48 hours, I had them done Wed night so they won't be done until tonight and they can't do the PORT until Monday morning. Last night my normal IV went bad, it was the second one I had went through. And after 3 different people tried in 3 different places, they could not get a new one started, so I missed my IV antibiotics last night and this morning, only getting the inhaled one, which today the doctor took me off of one of the IV antibiotics anyways. So I'm on 1 IV med and 1 inhaled for now until they get my final cultures back from the Bronc. So because I can't go until Monday without my meds, they had to place (or try to) a PICC line. It was the worst experience I have had with getting a PICC placed! It ended up only being a mid-line, which only goes up to my shoulder. But it hurt so bad, I don't think the doctor gave me enough lidocaine at the site because I could feel most of the poking and prodding he was doing. I was in tears by the end and my arm hurt so bad I couldn't move it and is still is sore, 2 hours later. So the plan now is for my PORT to be placed Monday morning as long as my blood cultures come back clean.

I am feeling much better then I did on Wednesday, Thursday, or Friday. I have no pain in my chest anymore, and all of my vitals are back to normal. Other then I'm still on O2 most the time, only off for short period of times. Normal O2 saturation's should be between 90 and 100, 90 is on the low side and when I'm off the O2 mine stay right at about 90 or 91, my normal is between 94-96. I'm scheduled to get my PORT in the morning so can't have any thing to eat or drink after midnight tonight. The plan is still for me to stay here until the results come back from my washes the doctor took during my bronc, not sure how long that will be yet.

Thursday, July 7, 2011

Update on Clinic

I went to clinic last Wednesday, just haven't had a chance to post about it until now. The results were nothing good. My PFT's were down again from 35% to 32%, which is not a lot but I have been steadily declining since April. We have 3 CF doctors in our office, 2 of which I have been seeing since I transitioned to this clinic back in '08, but the other one just came on a few months ago. This was my first visit with her, I like them all very much! I had some extensive cultures sent in when I was there in May, those so far are coming back normal, and by normal I mean only growing the bugs I normally grow. Although they test and grow these for 3 months, so the final report won't be until August. So still no clear reason as to my decline. Dr. Lehman wasn't comfortable doing nothing about the decline and fevers being back, but she didn't think it warranted an admission either. So the plan is oral anti-biotic (Leviquen)for 2 weeks, and return for repeat appointment. She wanted to give a few things a chance to work, 1 being the anti-biotic, 2 my recent increase in exercise and she asked me to add more to it making it 5 days a week, and 3 the recent fix in the house. So I go back next Wednesday, if my numbers are the same I think she will admit me and then they want to do a bronc-scope, where they put a camera down in my lungs and take sample's from deep down in. This is pretty much the last test that could give me any sort of answer as to why the decline, if it shows nothing unusual then I think I will be at a place where I have to accept it as disease progression. It's a hard pill to swallow, and I am not willing to accept that is true until all options are exhausted. I have always and always will do everything in my power to fight this.