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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Wednesday, July 29, 2009

CF Firsts...

Alright, so I read two blogs that I have seen this on and thought it would be awesome to share with my friends and family!

My First . . .

Diagnosis- 21 years old. I had a positive sweat test but the doc wanted to be absolutely sure. They called with the blood test results (kinda, they wouldn't tell me over the phone) the day after my wedding.

CF Doctor- The same one since I was diagnosed, Dr. Churnick. Head of the Cystic Fibrosis Clinic in the National Institutes of Health (NIH) in Bethesda, MD

PFT- I'm pretty sure it was before my DX, when I was 16 or so. I did a lot of test in an effort to DX my muscle disease.

Nebulizer treatment- I was young...maybe 9? I was DX'd w/ chronic bronchitis and asthma as a child.

Vest treatment- 27

Dose of Pulmozyme- 27

CF Sibling: None

Non-CF Sibling: Pete; my last entry was all about him!

"Clean out": My first Tune up/Clean out was right after my 30th birthday. My doctor was very happy that I made it to 30 before needing one. My PFTs had droped to 77%, they had always been in the 90's or above. It's ironic because now my base line is low 80s, high 70s...

Bad memories: Vomiting, sitting on the cold bathroom floor in tears alone, because everyone in the house was asleep. I didn't like to wake anyone up, so I sat in there alone--sometimes in the dark so I didn't wake anyone. (This actually happened several times until they figured out a had gall bladder issues/pancreatitis) My mom woke up when she heard the bath water running. It always made the pain better, or maybe it just relaxed me to be in a hot bath. I'd only be in it for 15 or 20 minutes before the pain would come back. Then I'd put my pajama's back on and my mom and dad would drive me into the hospital. They NEVER figured out what the problem was.(until I got away from my pediatric doc and started seeing someone else. She said gall bladder and sent me to the best GI in town, he was amazed I was only 15. The next time this type of thing happened my mom called him at 3 in the morning. He met us at the hospital and told them to check my amylase and lipase levels. The were so high...he stood there with his mouth open staring at me...)

Good memories: Any with my daughter in them!!!

Real Friend- When I was in kindergarten I made my first real friend (non imaginary). Carlolyn Coelho; sadly we have lost touch over the years.

Dose of Tobi- Durring my first tune up I had an IV of Tobi, but I have never had the inhaled Tobi (tobramycin)

Read: "One Fish Two Fish", as a tween it was "Are You There God, It's Me Margaret."

Started thinking about mortality: I think I always thought about it. But I started to think about my own at 15 and was fixated on it for a while.

Started realizing I'm gonna live through this chapter and then the next one too: When I was DX'd at 21, I couldn't see that but gradually afterwards I realized I could make this work. I realized I had to.

First loss: CF related it was a girl I had only made a few comments on her blog and didn't really know. Her name was Debbie, the first CF death that hit me hard...

First time I really remember FEELING sick: It is one of my first memories as a toddler. I guess I was 3 or 4 and I was laying under the Christmas Tree holding my ear. (Ear infection) I recall thinking that Santa was coming and he would made me feel better.

First hemoptysis: Not happened yet

First major bleed (later diagnosed as Pulmonary Endometriosis): None

First home IVs: Never had them, we have an IV center that my primary dr likes to send me to

First home IVs with no hospital time: None yet

First time I freaked out about my fertility: I never had a problem getting pregnant. Just one staying that way. It took 5 miscarriages for the doctors to figure out that I had a blood clotting problem as well, my blood clots too much. At that point I made the decision that with my medical history and terrible genes, and the fact that Kate needed a mother who wasn't going to come and go but one who would stay around...I had a tubal ligation.

First time as public advocate for CF Adult issues: Battle for The Cure, Amtgard. I think I was 24?

First time a relationship changed dramatically during/immediately following big changes in my health: 21, I was DX'd right after my wedding. I told him he could leave since it would only get worse and he said, " Chrissy, don't be stupid." He still tells me that!!

First time without health coverage: I didn't have it when I was a kid which could be why I was DX'd so late. Luckily I am in a life time study for adult CF patients at the NIH, so even if I loose insurance I won't loose NIH. All my meds are free, except for extras from my primary and my GI. My tune up was paid for as well.

First PICC line: Have not had one yet

The First time it hit me: 23
When I was DX'x the only part of CF I understodod was the dying part; then with no time to stop reeling from the news...they told me I had two mitochondrial mutations. After a little while it hit me that I had two progressive disease and I educated myself about them. One effected my lungs and digestive sustem and the other would more than likely take my ability to walk one day and possibly more than that.
I had a choice; I could sit around and be angry and feel sorry for myself or I could teach my daughter and others around me that no matter what the odds are you can deal. These diseases will probably take my life. I know that and I'm OK with it...but no one will say that CF beat me, or that "I lost a battle"...no way.


  1. This made me cry. You are always in my prayers, and I am always a phone call away if you need me. That goes for Frank and Kate too. Love you guys.

  2. Chrissy,
    I love reading your blogs! Thank you for sharing that with us. It made me cry too!!!! Since I have met you I have been asked several times who my hero is. I have answered "My friend Chrissy!!" You continue to do things that just prove even more to me that you are my hero!! As Scott said.... You know we are here all you have to do is pick up the phone.

  3. Nice Chrissy! You have quite a few CF firsts yet to experience, but here's to you never having to :)!!!! Thanks for sharing.