So it begins again...

It's been awhile since I've posted a blog, which is good and bad. I usually only feel the need to post when I'm not feeling well or something is going on with my health that I'd like to share with people without making tons of phone calls and explaining it all. I've been on my MAC medicine for a little over a year, and had a brief scare that some of the side effects were showing up (blurry vision, hearing loss) but it was just a scare and the doctor's are not concerned they just wanted me to stay off med's for a month to be safe. I have been off the medicine for a month now and was getting ready to start them back up when I got sick. The doctor's found two infections (bugs) from my last culture so that means I have two infections on top of my bacterial infection in my lungs. I'm on heavy treatment for these but with that comes more doctor's appointments, more lab work, less energy, and just a lot of down time for me. I'm not looking forward to it, that's for sure. I'm optimistic and hoping that in a few months this will all be old news and I'll be back to breathing easily.

Thanks for checking in on me.

                                                                                 

Treatment starts...Today.

This is just an informative blog to let those who want to know how I'm doing and what's going on with my health.

For those of you who don't know, I haven't been getting better from all the hospital visits, antibiotics, and home treatment as I should be. My CF doctors have been looking into it and finally found a growth of a micro-bacteria growing in my lungs. He set me up with a highly recommended infectious disease doctor who wasn't even taking patients at the time, but made an exception for my case.

Today I met my infectious disease doctor. We went over what I have been growing in the past few cultures, and it's called "MAC" (MYCOBACTERIUM AVIUM COMPLEX). It's NOT a contagious infection. However it's an infection that has probably been causing my unfortunate sick times in the past year. I start treatment today, and according to my doctor it will last anywhere from 18-24 months.

I found this website with a lot of information that some of my friends and family may want to read, I think it's easier to just read it rather than me summarizing everything it says. I've gone over the risks of side effects with my doctor and loved ones, and hope that I simply am 'lucky' enough to avoid these or catch them before they get too bad.

For the next year and half or so I'll be doing monthly blood work (for those of you who know me, know that I am really not a fan of this), monthly sputum cultures, hearing and vision tests every 6 months. The doctor says that I should be feeling better any time between a few weeks and a couple months, and hopefully this time....STAY BETTER.

http://maclungdisease.org/more-mac-information

On Track & Diabetic Pump

So I logged on to my ASU account and noticed a slight change in my profile. Instead of saying in bright red letters mocking me saying "OFF TRACK" my major progress finally says in encouraging bright green letters "On Track". This just completely made my day.

During my college career SO far I've been through at least 8 courses of antibiotics, 1 scary hospital stay, 2 PICC lines, I've poked myself with a needle every single day for insulin since January of 2011, and now I'm about to go through a huge transition from insulin pen needles to a diabetic pump.

My diabetes pump class is today. I'm not sure how I feel about that.

CF Related Diabetes

I have mentioned before that I have diabetes. The following question after I tell most people that is what type? Well, I don't have the regular type 1 or type 2 diabetes. I have what's call CF related diabetes. I was diagnosed a couple of years ago with diabetes when my A1C was 6.1. Normally, that is not considered diabetes, since the borderline for diabetes is 7.0, however with CF it is diagnosed earlier. The other day I went to the doctors and checked my A1C and it has shot up to 8.3. This is obviously not good, and so I've been put on rapid acting insulin permanently on top of my long acting insulin. That means 4-5 needle pokes per day. It's no fun at all, but hopefully getting my diabetes under control will help get my lung functions under control. The doctors explained that as my A1C gets higher, it makes my mucus even thicker and makes me more prone to infections and bacteria. The next step is for me to consider getting an insulin pump. So I'm going to be researching those the next few weeks. 

On a happier note, while at the doctor my lung function tests have improved from 63% last week to 71%! That's a lot better than they have been for me in months. For those of you who don't know about these they are called Pulmonary Function Tests. I get them done almost every time I am at the doctor, and they measure how much oxygen is getting through my lungs. There is considered to be an obstruction in the airways if the results are anywhere below 80%, so a normal person should get well over 80% on these tests. Normal for me is mid-80's. I am still on antibiotics through a PICC line but if I keep improving at this rate I should get it out in the next couple of weeks.

Getting Better!

So I've been on antibiotics for a couple of days and the good news is I think I'm starting to feel better! I still have to limit myself to minimal activity before I start getting out of breath. I went to the movies last night and that was a stretch I think, I came home and immediately took a treatment and went to bed. But I am definitely happy with my progress. So this is just a short blog about my progress since I was extremely happy and excited about it! I go to the doctors next Thursday and results from labs and PFT (Pulmonary Function Test) will help determine if I am actually getting better. My hopes are up though. I would love to really just get rid of this infection for good, since I have had it off and on since last August! 

PICC

So to start off I haven't been feeling well lately. I've had a terrible cough, coughing up a lot of mucus, and unfortunately my treatments have been rough on me and I started coughing up blood (I know gross, but hey it happened). I called into my doctors office last week and they sent me to do a sputum culture (they do tests on the mucus I cough up to check for any infections) and yesterday at my doctors appointment they told me they found pseudomonas. This is fairly common for those with CF and can be treated a number of ways. Since my oral antibiotics were getting too rough for me and causing me to cough up blood they had me admitted into out patient procedure to have a PICC line put in. A PICC line is basically like an extended IV that is put in with a needle and its a tiny tube that goes from my arm to my heart and they push antibiotics through it. I just got home from getting my PICC line put in, I'm terribly bad with needles, terrified. With the help of my parents and my boyfriend it went fairly well. My arm doesn't feel to well now though. It's hard to lift my arm but I'm supposed to be using  it as normal as possible. I start treatments tomorrow through the PICC and I'm hoping it goes better.

Fighting Pseudomonas aeruginosa

As I said in my last blog, my doctors recently found Pseudomonas in my sputum culture. 
Pseudomonas is a bacteria that infects a large number of CF patients. After doing some research online and from what I learned from my doctors here is a brief over view of what it is:
A person afflicted with the pseudomonas infection as a result of his vulnerability caused by cystic fibrosis will display the following symptoms:

• Coughing,
• Difficulty in breathing,
• Wheezing,
• Lack of appetite,
• Fatigue,
• Weight loss,
• A blue tinge may be present on the skin,
• The patient’s abdomen may be slightly enlarged, and
• Lung failure

It is very important for patients to be treated as soon as possible when pseudomonas is detected in the lungs. This can be done through the administration of antibiotics, such as inhaled Tobi or Tobramicyn. Unfortunately, more often than not pseudomonas infection becomes chronic in cystic fibrosis patients.

You can read more here : http://www.aboutcysticfibrosis.com/cystic-fibrosis-pseudomonas.htm

So far, I have had all of these symptoms except the last three listed. My lungs have obviously been severely affected but not to the point they have failed.

If you read on it is very hard to fight this infection because it has the capability to create a protective shell around itself, called a biofilm. This makes it very resistant to a wide range of antibiotics.

I am starting two antibiotics today called Tobramycin and Meropenem, both through my PICC line. 

On top of these antibiotics I am taking my Vest ThAIRapy treatment once every 3 hours, along with an inhaled treatment of Albuterol. Both of these help me cough up more mucus, and the more I cough up the better.

I have been on Tobramycin before the last time I grew Pseudomonas late last year. I have never been on Meropenem and the doctors are hoping that I react well with it. 

Intro

My name is Juliann. I am starting this blog today to share with my family, friends, and anyone online who is interested in reading about my struggles with Cystic Fibrosis. You may wonder what a day is like for me. A lot of people in my life know I have Cystic Fibrosis, but along with fighting this disease I am also fighting Diabetes (not Type I or Type II, it's a special kind called CF related Diabetes), I also have Asthma. 

Even though life sometimes gets in the way and sometimes I get behind, a typical day for me would be to:

Take 1-2 Vest ThAIRapy Treatments (30 minutes each)

Take 1 inhaled treatment of Pulmozyme

Take 5 Creon Enzymes with all of my meals

Take 3-4 Creon Enzymes with all of my snacks

Take 3 Vitamin related pills twice a day

Take a Liver related pill twice a day

Take Advair Inhaler twice a day

Take Albuterol Inhaler with activity

Use Flonase spray twice a day

Check my blood sugar 4 times daily

Take my Lantus Insulin in a Syringe Pen once a day

Recently, with school and work and internships distracting me I haven't been successfully keeping up on these medications and treatments as well as I should. 

I'm hoping that as I start this blog it will also help me stay on track.