Thursday, February 19, 2009

If you are overwhelmed.....

If you are like me, you get overwhelmed sometimes trying to keep up with everyone in the blog community. I find myself during times of prayer, praying for the wrong child, or saying the wrong name, etc. At least God knows who I'm supposed to be praying for. Whew.. it gets overwhelming sometimes. I don't think as clearly as I used to, and I blame a lot of it on the transplant medications. They affect memory, and I just don't feel as sharp. So, to all of my fellow bloggers, if I ever call you the wrong name, or call your child the wrong name, please forgive me. I do mean well.

Now, for all of my new readers, and for those who are overwhelmed like me, I am going to "catch you up". Here is a quick "about me":

My name is Christy.. as if you didn't know.

I was diagnosed with Cystic Fibrosis at 4 years old.

I am an RN, but retired in 1998 because of my health. I do keep up my license though.

I had a living related lobar transplant in 2001 at Duke University Medical Center. In other words, they removed both of my lungs and replaced them with a lobe from my mom and a lobe from my uncle. They are both doing great!


I do not have CF in my new lungs (and never will), but still have CF in the rest of my body.

I have diabetes, fibromyalgia, osteoporosis, gallstones, irritable bowel syndrome, and chronic sinusitis.

I had the nissen fundoplication surgery (stomach wrap) to treat reflux 3 weeks after my lung transplant.

I started having kidney problems about 4 years after my lung transplant. This was caused by the anti-rejection meds, diabetes, and high blood pressure (due to the meds).

I had a kidney transplant donated by my mom this past November. She is doing great!

My kidney is functioning beautifully.

I started showing signs of chronic rejection of my lungs almost 2 years ago. They started me on some new medications that seem to have helped that. 

My lung function averages around 75%. Some post-transplanters can get above 100% after receiving new lungs, but I only got lobes, so I'll never get that high. 

I have had 4 sinus surgeries, the most recent being a week ago.

I still have a port-a-cath, because I have to receive IV antibiotics for my chronic sinusitis once or twice a year.

I average about 42 pills a day (yes, they are all legal).. give or take a few depending on my condition(s).

My husband's name is Jason.

We just celebrated our 3rd anniversary on Valentine's Day. You can read about how we met here.

I have a 13 year old daughter named Casey. You can read more about her here.

She does not have CF, but she does have asthma and allergies.

My parents and sister live very close to me. They moved here to be with me before my lung transplant, because I was so sick. They loved it and stayed. :)


I encourage all of my fellow bloggers to do a quick "about me" (ok, maybe mine wasn't so quick). That way, for those of us who are overwhelmed, we can quickly catch up. :)


13 comments:

Ellie Grace and Bennett said...

I learned something new about you!!! I didn't know you were an RN...very cool. I always told Brandon after living in the NICU for 6 months before Bennett's death, that I would LOVE to be a NICU nurse. We consider Bennett and Ellie's nurses our family ~ to this day. Thanks for the continued prayers. In retrospect, we really aren't in bad shape...a little cold...a little fever, but we're all here and I would rather have a wild child than a sick child any day. I think I will call my clinic tomorrow though. I would hate for this to become something a lot worse than it is now. :)
Blessings,
Ang

CFlover said...

Fantastic!! Im going to do mine now!

Lil' Chris' Mom said...

That's a great idea! I've been getting some confused too, you are not the only one;)
M

Katey said...

Great idea...loved the post. Maybe I'll do one this weekend like that :)

And yes...transplant does effect our memories...unfortunately :)

Oh...question: so did the extra meds for your chronic rejection reverse it or just stablize it? They haven't done anything else for it have they?? Just asking because my functions are LOW (high 30s/low 40s)....and I have had extra meds added on plus 2 rounds of the photo...and while I'm not getting worse per se, but not getting better! Just curious!

Natalia Ritchie said...

Good idea!! I learned so much about you in that post!! I will do one too....

CowTown said...

Oh good, things I've learned about you. I forgot that you received all your new organs from family. That is so incredible!!! I'm fascinated and have some questions for you about that. :)

When you said...
"My lung function averages around 75%. Some post-transplanters can get above 100% after receiving new lungs, but I only got lobes, so I'll never get that high."

--what do you mean that you only got lobes so you'll not get as high as if you got lungs? I don't understand.

I might add more medical stuff to my blog as well. What a laundry list, hugh?

Christy said...

Ang,
I think it's very common for those who spend so much time in the hospital (either as a patient, parent, spouse, etc) think about going in the medical field. I think that's why so many CFers become nurses or want to be nurses. I had never been hospitalized when I started nursing school, but I definitely had my share of clinic visits, meds, nebs, etc and really wanted to be on the other side of it.. not the patient!

Katey,
I'm going to email you about the meds. :)

Kelly,
I'm doing another post about lobar transplants to explain it.

Somer Love said...

This is a good idea I will work on one too! Go out and get some natural vitamin D... Oh and I get confused sometimes too! Your lucky to at least have a valid excuse with those tx drugs... Will just say mine is caused by hmmm albuterol :) Sounds good to me!

Xo

Carrie said...

God knows what's in our hearts, but I know what you mean!

Hmmmm, me, huh?

I'll work on it and tweet you when it's done!

Jessie said...

Hey Christy, you were diagnosed at the age of 4?


thanks for your comment about her video :)

Christy said...

Yes Jessie,
They tested me for CF at 16 months, but I tested negative. They think the machine malfunctioned. That's what they told my parents at least. They didn't test me again until I was 4. The gluten free diets and other things they tried didn't make a difference, so that's why they retested me. I was having malabsorption, but not lung problems at that age.

Tooter's Mommy (Courtney) said...

I can't imagine how angry your parents must have been to be told you didn't have CF, to find out 2 1/2 years later the doctors were wrong!!

It always boggles my mind to hear about people making past infancy without getting their diagnosis.

Tooter's Mommy (Courtney) said...
This comment has been removed by the author.