Warning this post is a bit morbid...so read with caution.
so me and my cystic sister were talking tonight via msn and she asked "where do our lungs go" (after the surgery before they put the new ones in...where do our olds ones go?)
She wants hers donated to science...I definitely would want that too...but I wonder if they just compost them? I wonder how old and decrepit they are after they take them out...I picture the lungs being taken out of my chest and them being disintegrating in the surgeons hands, like powder, falling apart...is this too morbid to read? maybe they just compost them with all the cafeteria waste or something for the hospital gardens? ick. haha but seriously...what do they do with all of those old lungs?
Anyways I had clinic today, I am now down to 12 mg of prednisone, and I am getting burned by the sun so badly, which I just found out today is from the steriod...they did not warn me to be careful in the sun, and I was out for five minutes this weekend and presto burnt up like a crisp. My skin is also really sensative...it's super thin from the prednisone, and I keep getting all these cuts where my skin just peels away and almost has boils, yet not...one of them looks like someone took a cigarette and burned me on my leg. ouch...is this too much information?
My FEV1% is stable at .80 liters and 23%. I have upped my pulmicort to 4 puffs twice a day and 2 puffs once in the afternoon...to try to combat my shortness of breath from dropping the pred. I wish there was some sort of natural anti - inflammatory that I could start taking...or eating...or doing, because inflammation seems to be my biggest problem.
Also I gained another 2 pounds in three weeks. I am not even trying anymore, and the weight just keeps on coming! I am now up to 118. Back in February I was 103...such a little waif. My goal weight is 120 at 5'4...unheard of, for me having CF! I think this extra weight is really helping me fight infections and colds though.
I went to the health food store and stocked up on vitamin C yesterday. I head up to my university town tomorrow evening for a concert at a local pub. I am so excited. I miss living there. It will be great to see everyone who is still there. I tell ya though, I am not missing going to school. I am loving working on my business, and apartment, and doing more 'me' things. I don't know how I ever had the time to go to school! I seem so busy! haha
Up Next...New York City baby...16 days and counting.
3 comments:
Hey Girlie!
I live in Chicago. When I listed for transplant, I signed a little agreement that my old cystic fibrosis lungs would be sent to University of Iowa after I got my transplant. They apparently had/have a research program that was/is desperately looking for CF mucus producing tissue...
It was only irony that my beautiful, new, un-freakingly-believable lungs came to me from Iowa - from a beautiful, precious 17-year-old girl who felt very strongly about organ donation...
We were told by our pathology lab, they (other than mine) they keep our old lungs indefinitely - kinda "on file"... I don't know if that's still the case. Composting them would be interesting... I have to imagine that ours would be rather slippery...
Listen, HArmstrong - you're in for the ride of your life. I hope that your ride is as amazing as mine has been... I got my beautiful lungs 9 1/2 years ago, days before my 40th birthday. They blow my freakin' mind. It's been 9 1/2 years and I still think about how I'm breathing every single day...
I speak a lot about organ donation now - I tell people about my hero, my donor Kari, and I tell them how special and important organ donation is... I also do that because I know that there are people like you waiting... I hope you don't have to wait long... I hope your surgery and recovery are fast and you're strong... I hope your life afterwards is as amazing as mine has been... That's what I hope.
I have some of my story about me, and about my donor, at www.ClimbingForKari.org and I blog about organ donation at www.ReviveHope.com
You take care... You've got a journey ahead of you! It's survivable, and amazing afterwards - particularly since you've never really known what it's like to breathe "normally"... Keep as active as possible - exercise! Keep your weight where it should be - screw vanity, an extra pound can be insurance. I wish the best for you...
Love, Steve
Steve Ferkau
Chicago, IL
@BreathinSteven:
Nice... thanks for answering that! Can you go visit your lungs? haha. That would truely be an out of body experience. And I apologize if this sounds like it is coming from a sick person--thankfully we can always blame the meds for making us a little loopy--even if that is only a half-truth.
Hat,
Holy cow, I need to start taking weight tips from you! You're a champ! I have been buying the homo milk and my whole family looks on in disgust as I indulge in a giant glass. It is so good lol.
Hi Laby!!!
Actually, yes, yes we could... I was transplanted at Loyola in Chicago (Maywood) and at a little lecture by a pathologist there -- she advised us that we could come in and see our lungs if we made an appointment with her... I don't know if that is still the case... But, as I mentioned, mine went to University of Iowa... On a neat note -- I get to visit there next month and speak to a group of heart and lung recipients... One of the heart recipients who hopes to make it to the gathering has the heart that matches my lungs -- from the same beautiful girl...
And I really don't consider it an odd question -- you and I and hat have cystic fibrosis -- we likely have more than a passing interest in that particular part of our bodies!!!
And man, I love homo milk too!!! Actually -- Cocoa Puffs or Lucky Charms with half & half is to die for... And, I think they stay crunchier because the fat blocks them from getting soggy as quickly!
You two take care...
Love, Steve
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