Tuesday, July 28, 2009

My CF Firsts

Another bloggy did this list, so I thought I'd take a crack at it. Shout out to Casey's blog. Check him out!

Since I first published this, other CFers have been posting their firsts. Here is one mom's account of her baby girl's CF firsts. It really shows how things have changed since Cystic Lady was born in 1976, and I in 1980: A Day In the Life of a CF Mom;

I have also updated my firsts to include their firsts to we can all compare :)

Here are some of my CF "firsts." I based my list on my own knowledge and memory, though Casey, I suspect, had to ask his parents for the info. (Uh...my parents still don't know about my blog). I will also share any memories I have.

My First . . .

Breath- 1980

Pancreatic Enzymes- As early as they could put 'em in my formula, I think.

Diagnosis- 6 months old. Earliest they could do it in 1980, I think.

Daily Vitamin- Age 3. Flintstones Complete.

Oral Antibiotic- Age 6 or younger.

First Asthma attack- 7 years old.

Halloween Costume in hospital - 8 Years Old. I was a red M&M. I remember the face of the nurse who helped me make it. It was a project for us.

CF Doctor and clinic- 6 mos. Dr. Gibson at Rush Presbyterian St. Luke's Medical Center, Chicago. He was the best doc I ever had.

Formal Exercise other than sports: Age 4. My mom made me and Cystic Lady (then more of a Cystic Kid) do this Mickey Mouse Club Exercise. It was lame. Following that (Age 8ish), she made us do this "Get In Shape, Girl" exercise for kids. It was similarly lame.

PFT- Not sure. I do know that Dr. Gibson said that according to my first try at a PFT, I was already dead. I have never been good at them.

Nebulizer treatment- Age 7 or 8?

Dose of Pulmozyme- About 13 years old.

CF Sibling: At birth, came to realize I have a 4 year old sister, Cystic Lady.

Non-CF Sibling: At birth, came to realize I have a 18 month old brother, Cystic Sibling.

Hospital Stay "Clean out": Age 8, where I really began to be afraid of hospitals.

Bad memories:
being forced, screaming and in full tantrum (and I could create some doozies well into my pre-adolescence), into Chest PT with a machine. I had never seen a machine before. It was very loud. The PT woman was mean and hurt my wrist and I still sorta have a hatred for her; Remember being alone a lot and watching L.A. Law on tv; My sister having a separate room from me, as they just started to separate CF patients' rooms and/or they were afraid we would fight, me 8, she 12; my room was always dark; My IV came out in the middle of the night and soaked my bed with liquid. I had to get a new one in the middle of the night. Even then, I knew this was ridiculous; Nurse lady took me outside to a park and we played on a swing. Even then, I knew that this was supposed to be a kid-like experience for me in the middle of a bunch of adult-like experiences. I was not amused but put on a "wow, thanks," expression; Meeting two teenagers both w/ CF but I think they were unrelated. They had these horrible IVs in their arms that were some sort of long term IV that you could see run up the arm along with the vein and a sort of huge tagaderm over the whole thing. Their room looked like a dorm room and I thought, they must live here. They had posters on the wall and everything. I worried my sister would move in with these CF teenagers in their CF teen room; The word clean-out and me thinking it meant they were gonna go in me and get something out of me; Going back to third grade and doing show and tell with a stuffed animal mouse I got, and saying I got it in the hospital, then not wanting to answer when someone asked me why I was there, my third grade teacher, who I actually adore, then scolding me, "Why did you bring it up, then?"

Good memories: Making M&M halloween costume with a nurse. She brought the poster board and we made the straps out of ties from a hospital gown; Skating on my IV pole down the hallway; Learning to play pool in the "lounge;" Watching adult tv like L.A. Law and Thirtysomething all day and night; meeting my black roomate who had something really bad wrong with her, and no visitors. We got along great and my 8 year old brain thought she looked just like Tracy Chapman because they had the same hair; Someone gave me really adult nice-smelling shampoo to use; Visiting the nurses and eating candy from them; putting hospital-issue deoderant on the inside of my wrist to my elbow because that is where I thought my "underarm" was, then smelling powder fresh all day; Getting gifts like balloons and stuffed animals.


Dose of Tobi- I think, 12 years old. Prior to that, inhaled tobramycin mixed with saline and a needle, the old fashioned way.

Read "Alex: The Life of a Child:" Age 8.

Started thinking about mortality: Age 8.

Started realizing I'm gonna live through this chapter and then the next one too: Age 20

First loss to transplant: Age 13, my Godbrother. He was 19.

First time I really remember FEELING sick: Age 9 or 10 when my Gramma was visiting.

First hemoptysis: Age 22, at work filing papers: Gurgle Gurgle.

First major bleed (later diagnosed as Pulmonary Endometriosis): Age 24

First home IVs: Age 20

First home IVs with no hospital time: Age 29

First time I freaked out about my fertility: Age 24

First time as public advocate for CF Adult issues: Age 12. Ha! Youngest member of the Chicago "Chosen Few" group, who had to change their name after we realized, it wasn't "a few" people that were making it to adulthood with CF.

First time a relationship changed dramatically during/immediately following big changes in my health: Age 8.

First time without health coverage: Age 21, following graduation from college and without a job (Also, my last time.)

First PICC line: Age 20

I could go on!! Maybe I'll add more tomorrow.

What are your CF firsts?


  1. You have a better memory than I my friend! I tried thinking about my "firsts" and all I could come up with was Holly Martin. I fell in love with her in 4th grade. Everything after that is a blur...I think that's when I started drinking though.


  2. You DO have a good memory, I should have elaborated on my list more, Ya, I remember tobramycin!! I'm not too young! I was about 8-10 when I was mixing it! But that was when i lived in mississippi and they are like YEARS behind in the CF world..thats another story though..


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