Thursday, March 20, 2008

This Is The CF Life

Warning: the linked article contains some discussion about some adult situations that aren't suitable for children to read.

This is a great glimpse at the lives of CFers.

Every person with a chronic disease must decide what kind of balance between quality and quantity of life they will live by. Risks. While we are extremely cautious and consider everything that we do (when our lives are more "normal"), Tricia has always been willing to take a certain amount of risk to have a greater quality of life (being able to enjoy life), knowing that the consequences could shorten her quantity of life. Even something as simple as going out to eat or riding in a friend's car could have monumental affects.

And, with a double lung transplant, we're going to have to take even more precautions. But, fortunately, transplants also give people the opportunity to live longer and fuller lives.

When Tricia was young, and a patient at CHOP, CFers were often placed in the same room with each other. Although we now understand how dangerous that was for them, it was a great experience for Tricia, helping her to be more willing to share about her disease with others.

Many of her friends from those days are no longer alive (whether or not to do with the living conditions at CHOP at the time is unknown). Because of the CFF and the millions who have donated, we now understand, more fully, the risks that are involved with this disease and the care that can allow CFers to live a more normal life.

Thanks.

Nate

PS. Bill Taub (quoted in the article) is on Tricia's CF Team and a very good friend. I'll be hanging out with him tomorrow, probably near the food court in Duke South, talking with people about CF.

19 comments:

jmgarnet76 said...

It is amazing how much "they" have learned about CF in the last 20 years.

Mariahs Mom said...

Thanks for sharing. I am really interested in knowing more about what Tricia and others are going through with CF. I will be praying for those new lungs to come soon

Tricia :)

Blonde_Lawyer said...

Thanks for the article. My husband often talks about CF camp and how great it was.

The Adoption Of William said...

Wow...I cannot imagine. I hope Tricia's health stays good and that she can have her lung transplant VERY soon!

With Love and Hope,


Jen-William's Mom

www.specialneedsbaby.blogspot.com

Mary said...

Nate, thank you so much for posting this link today. I am a NICU nurse who lost a friend to CF several years ago, so your blog has hit me on several different levels. Even being a nurse AND knowing someone with CF who was waiting on a lung transplant, I still had absolutely no clue about all the restrictions placed on people with CF related to being around other people with CF. It really bites the big one that they can't even be around others with CF without having to fear getting a nasty infection. You have really done an amazing job at spreading the word about CF, keep it up!

Heather N said...

Thanks for sharing the link. My boyfriend and I both have CF. We have been together for 3 years now. We had to ask ourselves all of those questions, and make some hard decisions before starting our relationship.

Paul and Christy said...

Wow. We can read all you write and learn a lot from reading other things. We will still never know the what all it take to do what your doing Tricia. It really is encouraging. When I get lazy and don't want to wash the clothes or dishes, I just think that you would love to be home doing that for Nathan and Gwyneth. You are really teaching me a lot. Amazing what you can do from a hospital room and no voice to boot. Thanks Tricia. YOU are a blessing to me.
Christy in KY
http://www.homeschoolblogger.com/sharpcrew

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turtlemama said...

I found this article and its information fascinating. I focused on the study of CF in nursing school ('92) and never learned anything about isolating CF patients from one another. I guess this was right on the cusp of that discovery. Our floor (peds 0-4) had so few kids with CF that I quickly switched my interest to Hem/Onc, so I lost touch with the latest research on CF. This will definitely be food for thought. I'm having trouble imagining what it would be like as a parent or patient not being able to use others with the disease as a support system. Wow, that would be tough. Anxious to learn more. Blessings to you and your lovely family on this Easter.

Sarah

Ellen said...

Nate - Great article... thanks for investing so much time in educating your "internet fans", that we might learn more about CF and more about just what an incredible women your wife is for weighing the pros and cons of quality of life vs. quantity of life. Praying for lungs soon as well as good health for your family.

Jen said...

excellent article...thanks for the link!

Kim said...
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Kim said...
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Brody's Mom said...

This is such an eye-opener for me. Not having known any people with CF I was unaware of so many details. I had no idea that isolation was necessary among CFers.
Thank you for sharing this information with everyone!

Hugs, love & continued prayers for you all!!!

UKNat said...

Thank you for educating me about CF. It's amazing the challenges that Tricia is faced with daily and she still keeps such a positive attitude.

Still praying for Baby Gwyneth, you and new lungs for Tricia! Natalie

Christie said...

Wow I didn't know how fragile a person with CF is until reading that article. It is awesome though the things they are learning, and the things I hope they continue to learn to help people with CF live longer and fuller lives.
In God's Amazing Grace,
Christie

Ms. E said...

I was going to send you that link but incredibly you already found it! I was so overwhelmed by all the precautions necessary, and even reading Eva's blog about how she had to send letters to friends in the hospital through the tube system or in special bags before they could be delivered. Thank you for your continued awareness

matt said...

That is truly hard to believe...I can't imagine how difficult that must be. Thanks for posting the link.

ellen charge said...

hey im ellen i have charge syndrome and have been in with MANY MANY CFS out here in aus i found ur blog through another one and well i was lookign in ur archives and saw this yes ur arhives im wondering if youll even read this but wat i wanted to say was this that both of you aare amazing and yes i know about those four bed rooms i was often in with 3cfs at a ime was often in due to my tummy migrains and otehr such stuff well all these people i was in with lets say i knew 20 wich im sure i knew more but soem r closer than others well of that 20 only one is livign and is 20 now and is in an adult hosp where they as she calls it segagrate you nw does this mean that oru kids hosptials r worse than the adults or were we further back in time im only 23 and this was happenign till i was 18 and now my one of my firends is going ok is this coz she has her own room i bet that helps:) many hugs ellen from aus