Tuesday, January 15, 2013

Hemoptysis Episode and Children

Question:


I posted some questions on your blog a few weeks ago about how you manage having a baby with all the CF stuff. Thanks again for your response. : )

Here's another question: are you ever concerned about Mckenna's safety or your safety if you have a hemoptysis episode? For instance, if you were alone with her and you had a bad bleed? I have had periodic hemoptysis for nearly 20 years and had an embolization last year, but I still have random bleeds. For instance, last night I coughed up 1/4 cup, but I have no other symptoms of being sick right now. My husband and I have been discussing adopting a baby, but that does seem like a pretty big concern to me.

In addition, here's one more question. Do you feel safe traveling internationally if you are prone to bleeding? I have a lot of anxiety about it and don't really go anywhere too exotic for fear of an emergency. I saw that you went to Singapore, so I was wondering how you made that work.

If you could shed some light on how you deal with this scary and frustrating CF problem, I would really appreciate it. : )

.....

Answer:


I hope your Christmas season was a good one and that you are enjoying the new year thus far :)

To be honest, I've never been very concerned about having a massive hemoptysis and being alone with Mckenna. If it happens, it happens. There is always a neighbor or 911.

Bleeding on a flight is always a slight concern, but I do my best to avoid sudden movements as to control the already increased pressure in my lungs and I sit in the aisle. I used to prefer the window, but now I like access to the bathroom if and when I have a bleed. 

Most places have decent enough healthcare if you were to have an emergency. Singapore has top notch healthcare. I've also however spent a lot of time in China and they have no clue what CF is :)

Here's probably the best way to answer your question - I don't let my health dictate what I do or do not do. If I want to do something, I put myself in the best position to succeed, and I do it. I'm not going to let the chance of having a massive hemoptysis stop me from spending time alone with my daughter, or pursuing a family in the first place. I won't let the possibility of a bleed prevent me from seeing some of the most beautiful places in the world.

As long as I'm putting myself in the best position to succeed and working my butt off every day to be healthy, I'll reward myself with life!! :)

Hope that helps.

Comments (5)

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great answer, especially on not letting CF dictate what you can and cannot do. dead on the money. CF (pre AND post-tx) often means more planning and thinking ahead when doing fun things like traveling, but as of yet I have never found something I couldn't do because of it. Case in point, after a lifetime of travel, I studied abroad in college even with fairly low lung function (it actually improved while I was away because I was so active trying to see and do everything!) and went to Turkey just two weeks before I was placed on the transplant list. Both were well planned excursions and I brought all my "gear" (vest, O2, nebs, etc) along for the ride. Wouldn't have changed it for anything!

I have had hemo on a plane and abroad, but never a huge bleed. I always discussed what to do in those situations with my docs beforehand. I only had one instance where I had to go see a doctor because the hemo was over 1 cup when i was abroad, and that was in england where i got top-notch care from a doc who specialized in CF, much as I would have received here. Good luck!
2 replies · active 634 weeks ago
Mmmmmm, Turkey :p
I am the original sender of this question to Ronnie and just now noticed he included it as a post! What great timing as I just had some bleeding last night and I am supposed to fly to Virginia next week for work. Piper, I would love to chat with you about your experiences with hemoptysis. Could I contact you directly? I would really appreciate it!
-Sarah (33 year-old cyster)
Excellent question and wonderful as always answer Ronnie! Thank you so much for sharing!!!
1 reply · active 637 weeks ago

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