Things to think about
before meeting someone with CF:
1) Have they got the same bugs as you
2) Do they know the strain of their bugs, do you know the strain of yours
3) Where will you meet
4) How much it will hurt when they're not well, or they die.
The last one, is what I urge you too think about
most. If you get really close to someone, share that common bond, get on like a house on fire. I can tell you, that is the biggest most painful feeling in the world, is watching your friend go through worse than you, and you are helpless and can do nothing. I know this is morbid thoughts, I know that not everyone with CF dies young. But having just gone by the anniversary of one friends death last month, to be followed by another next month. It is the biggest form of torture you can possibly imagine. Especially as I am now sat in a bed on the same ward, with the same staff who held me as I watched my friend lose her battle.
Because of this, I personally am now urging people just not to meet. I think, deep down, you will be much better off not knowing someone, and only sharing a bond with them online. I completely understand the need for someone too talk to, too understand, to share your pain with. You can still do this online, and you aren't left with the oh so painful reminders when your friend gets ill and you can't be at the bedside like you always have been in the past.
Plus there is a huge guilt aspect. Cross-infection of different bugs, that, in my experiance doesn't happen often, and I agree with you that docs sometimes can be overly cautious and downright irritating, but when it does, and you give your friend a bug that you didn't know you had, you will be left feeling incredibly guilty. Cross infection, has never happened between me and my brother, or me and other friends with CF, we're very careful though, and keep a good distance from each other, and recently, we've stopped meeting if either of us is ill. CF bugs are very CF specific. They mutate to be able too grow in such sticky conditions our lungs provide, and once gotten are even harder to get rid of. Because of all the mutating and changing these bugs do, it also means that any sputum tests that are done, aren't all that accurate. They are testing like a micro meter of the gunk your lungs carry for something that may have mutated slightly to look different.
Sorry this turned into such a long blabbering post. But, this week, this is exactly the stuff I've been thinking about
, these are the concerns I now have with meeting my brother, or my really good friends, who I've known since being a kid. Sorry for butting into your thread, it just struck me as something that needed to be said.
All the best
Moderator of the Cystic Fibrosis Forums
Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
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Post Edited (Darkies Gem) : 9/19/2008 11:12:10 AM (GMT-6)
Posted 10/3/2008 11:56 PM (GMT -7)
I just read your post.
I do not know of any support groups in seattle. However, I would suggest calling our Children's Hospital for that kind of information.
Of course I know where Sequim is, over the rainbow!
I will be at Swedish Hospital later on this month. I will ask around there for information about support.
Currently it is Saturday, December 15, 2018 6:28 PM (GMT -7)
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