Tag Archives: symptoms

Check in time!

Posted in Blog Life by

I just wanted to give you guys an update since I’ve had a lot of people asking me how I am feeling since getting home. Well, that’s a loaded question really. CF sick is very different from “normal” sick. Most healthy people recover fairly quickly from the parainfluenza/flu or other viruses. However, with having CF (which already has my lungs very scared and diseased) a respiratory virus takes much longer to recover from. You have to take into account how bad my lungs already are. My baseline lung function is 30-35% which is not very much. Healthy people can have upwards of 100+% lung function, so my lungs suck very bad. So with having the parainfluenza on top of a regular CF exacerbation, it makes it much harder to “get better.”

I have cultured pseudomonas for years (I’m talking like 35+ years probably) in my lungs. That means that when I have a CF exacerbation (flare up if you will) we treat the pseudomonas. I will never get rid of it. We are basically treating the symptoms (increased cough, increased sputum production, more shortness of breath, increased wheezing, etc) and somewhat hope to knock the pseudomonas down a little bit. It doesn’t go far by any means because my lungs love to hold onto it and keep it nice and safe in there.

Antibiotics (oral and IV) don’t work as good as they used to for me. That’s the case because I have been on antibiotics so much over the years, my body gets used to them and they don’t have as much of an effect. I am allergic to some antibiotics which eliminates them for being in my arsenal as well. Prednisone doesn’t seem to open my lungs up like it used to either.

So with all that said…I am basically feeling the same, no better and no worse. I am very organized with my breathing treatments and IVs. One reason I don’t like being in the hospital is that they don’t keep a strict schedule with things. Yes, in the hospital I get my IVs in the window of time (every 8 hours for the current med) and breathing treatments when I request them. When I’m at home, I am on time with IV times and do my breathing treatments every 4-5 hours, except for when I’m sleeping unless I need one. I like being in charge of my stuff. I know I will do everything when I need it. Some people may go into the hospital and assume the nurses and doctors have it under control. That’s not always the case. I take better care of myself at home than they do in the hospital for my regular CF stuff. You have to be your own advocate for your healthcare. That’s why it’s very important to know what medicines you are on, when you take them, know your allergies, medical history and much more.

I’m sorry this is long…Bear with me. I just felt the need to explain that all in hopes that you can understand better what being CF sick is all about (within reason). So yes, I wish I could tell you I’m much better after being released from the hospital but that’s not the case. It’s going to take some time. I will continue to do all the things I need to do to make the best recovery. I’m hoping to get back to 30-35% lung function since that has been been baseline for some time now. Also remember that CF is a progressive disease which means it does get worse over time, with usually a slow decline. Now going from 34% to 21% lung function (relatively quick) was a bit of a shocker to the ol lungs and harder to adapt to. With CF being a slow progressing disease, you learn to adapt to lower lung function as it comes. Ok, I think that is a good update for now. Haha. Thank you for hanging in until the end of this post. Thank you for all the love, support and prayers!!

Until next time…

Another round of IVs down

Posted in Health update by

57 doses of Aztreonam, 19 doses of Amikacin, 133 Saline syringes (not including the extras for blood draws and reaccessing), 57 Heparin syringes, 2 Huber needles, 3 dressing changes…that’s what I have accomplished over the last 19 days plus tomorrow morning.  Tomorrow morning is my last doses of IVs and tomorrow afternoon is my last day of labs.  I will be needle free as of 1:15pm tomorrow afternoon!!  I’m very ready to be free from the needle and dressings that’s for sure.

Now for the million dollar question, “Do I feel better?”  A lot of people think that after I do IVs I’m “better” as in not sick anymore and that is not the case.  Yes, I am better for the time being and the goal is to stretch the time between IVs as long as possible.  IVs are inevitable in my life so I have to do what I have to do to keep on keeping on.   Continue reading →

In my element/health update

Posted in Blog Life, Health update by

Hello all!

I have been super busy and have been meaning to update you all.  It has been on my “to do” list for a week but it keeps getting bumped.  I have a few minutes to finally ‘get er done.’

The Rising Star educational night was really great!  Talking about CF and all of what it entails is my, or at least one of, my elements.  I love to educate people on CF.  I always encourage people to ask any questions they have about CF and what it’s like to have CF.  For those of you that were at the educational night, I hope that you all learned something and I didn’t bore you.  I have said it before, and I will say it again, I am pleasantly surprised by the amount of fundraising and awareness that the East Tennessee Chapter of the CFF raises.  I am grateful to be a part of it.  My nurse said, “now that we know that you are willing to do these kind of things, get ready!”  Challenge accepted!!
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Needle Free after 29 long days

Posted in IVs by

Freedom is being needle free!!  Well I know there is much more to freedom than that but right now that is my freedom.  I finished 4 weeks, actually 29 days, of IVs yesterday.  It is so nice to be free from IVs.  Now I know you are asking the million dollar questions, “How do you feel? Do you feel better?”  Better is a relative term.  I feel “better” in the big picture.  The IVs take so much out of me, wear me out and drain me.  Having IVs every 6 hours means that you don’t get much sleep or at least you only get to sleep in spurts.  It will take me a few days to a week to get back to somewhat normal feeling in the sense of not being so drained, or that is my hope.  As far as my lungs and how they feel, they feel better.  I am not coughing as much but still having my coughing fits and mornings are the worst.  Mornings are the worst and will always be the worst because when I lay down to sleep all of the junk in my lungs settles on the lung wall.  When I toss and turn or sit up it all starts to move and irritates my lungs, triggering coughing fits.  With that said, if you ever call me in the morning and I am still in bed I may not answer it because I will start coughing and it will not be a productive conversation and coughing in someones ear and not being able to talk is not one of my favorite things to do.  Continue reading →

14 days of IVs down…

Posted in IVs by

I started IVs at home on August 19th.  Today marks 14 days and I don’t feel any better.  I don’t feel horrible but I also don’t feel great in general.  I called my nurse to tell her that I was not feeling any better and that I think we need a med change.  I had to be at the hospital at noon for my weekly labs so when I was finished I stopped by clinic to see what she found out.  The verdict is that we are stopping the Aztreonam which was every 8 hours, staying on the Levaquin every 24 hours and adding Zosyn which is every 6 hours.  I have been on Zosyn many times.  The bummer about being on Zosyn is that it is every 6 hours and has to go in by gravity.  That means I am stuck to the IV pole 4 times a day for 30-45 min each time, not to mention the 2 hours it takes the Levaquin to infuse.  This means that I am not as mobile as I like to be when I’m on the medicine balls.  I will do what I have to do to feel better, so it is what it is.  Here comes even more jacked up sleep schedule.  Naps will be my friend, as if they aren’t always but more so right now. Continue reading →

CF Awareness Month: Signs & symptoms of CF

Here is a list of common signs and symptoms of CF:
  • Very salty-tasting skin (my mom used to kiss my forehead and lick her lips to see if I needed to eat a salty snack to replenish salt)
  • Persistent coughing (coughing is what we do and we do it well)
  • Coughing that produces thick sticky mucus (oh the things that come out of our lungs)
  • Frequent lung infections (frequently diagnosed as pneumonia or bronchitis before CF diagnosis and classified as CF Exacerbation and/or pneumonia after diagnosis)
  • Wheezing or shortness of breath (a lot of people with CF also have asthma like I do…double whammy)
  • Poor growth and slow weight gain, in spite of a good appetite, failure to thrive (what lead to my diagnosis)
  • Frequent greasy, bulky stools or difficulty in bowel movements (oh boy, you don’t even want to know)
  • Small, fleshy growths in the nose, called nasal polyps (there have been people that have been diagnosed because their polyps led to questioning CF because they are so prominent in CF patients) (I have had multiple sinus surgeries which I will talk about on another day)
  • Liver issues, enlarged or scaring or narrowing of the ducts

CF affects multiple parts of the body but is mostly known as a lung disease and/or problems with pancreatic/stomach.

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Chapter 1 – Cystic Fibrosis Facts & My Diagnosis

Posted in The Book by

“Playing the Cards Life has Dealt”

Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • Obstructs the pancreas and stops natural enzymes from helping the      body break down and absorb food.

Symptoms of Cystic Fibrosis (source:  http://www.cff.org/AboutCF/)

People with CF can have a variety of symptoms, including:

  • very salty-tasting skin;
  • persistent coughing, at times with phlegm;
  • frequent lung infections;
  • wheezing or shortness of breath;
  • poor growth/weight gain in spite of a good appetite; and
  • frequent greasy, bulky stools or difficulty in bowel movements

Continue reading →