A Promise

Having a terminal illness typically demands a strict regimen of medications, nutritional needs and a slew of other things. After 28 wonderful years of attempting to maintain this regimen I have to admit that I am not "strict" but rather I have at times been lax about much of it. However, during my CF clinic in October my team (yup a team of physicians) once again reminded me why doing all my medications everyday as prescribed is SO important.... a better prospect at a LONGER HEALTHIER LIFE!

So two weeks ago I made a promise to myself to do just that. So far, I haven't been 100% perfect but I am making a decision every day to attempt perfection. My biggest fault lies with doing my nebulizer treatments. I can swallow pills all day long but sitting still for 20-30 per treatment, which ends up being approximately 1hr twice daily, is simply hard for me, REALLY hard for me.

My motto: "Doing all my medications is not submission to my CF but rather freedom from it"

~Doodlin'

The turn of the season....

This morning felt more like Spring than anyother day thus far. The morning was crisp, dry and the trees are droping their leaves. As a new season emerges so does a new schedule, at least those of us who are in school. I decided to take more classes than usual this term as B will be working out of town for most of it, so needless to say, I will be kept busy with school. Starting to see the light at the end of tunnel.

This past weekend my beloved mother turned 50! I remember being little and thinking that 50 was old, but seeing how young my mother is compared to generations before her, I think 50 is truly much more reflective of a 1950's 30. While she has young grandchildren that my brother bare, she does not spend her days in the kitchen or in a rocking chair. She is active, working, traveling and keeping up with the current trends. I hope to see what type of a 50 year old my friends and I will be. Cool and hip if I have anything say in the matter :)

~Doodlin'

Tools for sanity

I have been finding myself reflecting back on childhood memories and experiences. These thoughts are typically triggered by a sound, taste and of late reading. I am sure by now you all know about the movie 'Where The Wilds Are'. Well, B grew up reading this story and was really excited to see this childhood favorite recreated in a movie. Since watching it I too have been drawn to remembering some of my personal favorites, likes of:

Shel Silverstein

Beverly Clearly

Dr. Seuss (Oh, the places you'll go!)

I could go on and on and on. The reason I have these fantastic memories of great stories is because I was encouraged to read. Growing up in a hospital or sick at home, you become bored with TV. Literally your brain can no longer process the images! But I always found comfort in a good story, whether a paragraph long or a bazillion page novel. I could take myself outside of my current situation onto an island of treasure, on a boat with sailors, or to the end of a side walk where other children go, there was no telling the places I'd go.

At times, any world but my own, is what has kept me sane. As adults we escape reality by having a drink after a stressful day, workout at the gym, blog, etc. Children us the avenue of make-believe and thru projecting themselves into a story that resembles a world they wish for. Reading is such a powerful tool for sanity.

~Doodlin'

No Problem, Mon!

B and I decided in early 2009 that we were going to get away during the 'holiday season' this year. As most of you know in 2008 after spending nearly two weeks in the hospital I had a feeding tube place the day after Thanksgiving. Shortly after the procedure I went home and started the roughly three month mental healing process. The feeding tube or g-tube for short, radically changed my life. This was another reminder of my CF.

B and I searched for about 2 months trying to find the perfect vacation destination. This destination needed to be calming, we needed to have access to clean water for the g-tube feedings, and a descent bed. We also both wanted to go somewhere warm. We finally decided on Jamaica.

Dunn's River Falls - Ocho Rios

Snorkeling in Ocho Rios

The View

It was the most amazing, invigorating, and healing vacation I have ever been on. The ocean is so beautiful, mesmerizing and of course calming. We stayed at an all-inclusive resort and I am so thankful we did. With this being my first time on vacation since having the g-tube I wanted to feel comfortable, which I did.

B and I would lay on the beach in the early mornings. While relaxing we would plan the afternoons activities. One day the skies opened up and poured, that day was a spa day! Another day we spend shopping in the town of Ocho Rios. We truly slept in, kept a loose agenda and tried to soak up the slow pace of vacation life.

~Doodlin'

Port-A-Cath Failure

Just on schedule for November I started feeling sick. For whatever reason, November seems to be the time of year for major medical issues to arise. After a week or so of increased coughing, shortness of breath, sleepless nights, and B telling me to go to the doctor's... I did. I recieved the news I always dread, IV antibiotics!

I hate IV's because they limit me. While I do have a port-a-cath which means I can do this all at home with the assistance of a home health care nurse, I still hate it. It's a reminder of my health status, it's a reminder that one day the IV antibiotics will no longer help, it's a reminder of all things Cystic Fibrosis.

So, I proceeded to start the IV antibiotics in the clinic (first doses must be done under supervisor to monitor any reactions), 6 hours later I was able to go home with a trunk full of supplies. Doing the treatment at home requires all the things being in the hospital requires. Strict sterilization, flushing the IV line with saline between medications, lots of alcohol pads (which starts to make my house smell like a hospital), sharpes containers, etc. I also have to strictly follow the medication timelines, every 6 hours for one drug and every 8 hours for the second. Yep... waking up during the night to "hook up" to the drug. This requires full attention so I have to fully wake up in order to ensure all procedures are being done.

Approximately the second day into doing the treatment routine, my port-a-cath site started to hurt when infusing the medication and saline flush. I called the home health care nurse, who then suggested that I be seen in clinic. After a frustrating appointment with a woman who clearly had no idea how to deal with a port-a-cath, I left the clinic. The next day I was seen by another woman, who was awesome. She knew exactly what to trouble shoot for. She got me scheduled for a dye test, which includes injecting dye into the IV line which then can be detected thru xray where the dye is going. The dye should stay within the port-a-cath and then flow directly into the vein. Well, it wasn't staying within my veins but rather filtrating under the tissue, causing the pain.

Long story short my port-a-cath failed. They must remove it! The alternative to a port-a-cath is a Picc Line. I had a Picc LIne place when I was 8 or 9 years old and it was suck a tramatic experience that I refused to ever have one again. After finding out that the port-a-cath had failed I knew I would need a Picc Line to carryout the IV treatment. Well, alot has changed in 15+ years making the Picc Line procedure less tramatic or maybe I am 27 years old not 8! I was still so nervous that I asked B to take the day off to be with me. He was great! He held my hand, he reassured thru the entire procedure and even made me laugh a time or two. After all that the 2 weeks of IV treatment when well and I ended up with a fully charged battery!

Good news is that my doctor feels that because I only generally needs the IV treatment about once a year that I don't need another port-a-cath. I will have to use the Picc Line method each time I need the IV's but that much better than a permanent piece of plastic in my chest. I will have to undergo a surgery to remove the broken/failed port-a-cath but on my watch, when I am ready!


(picture of a port-a-cath)

(Picture of a Picc Line)

(Picture of a Picc Line)

~Doodlin'