Distant relative with CF visiting my city

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welshwitch

Guest
Hi all!

I'm in a bit of a quandary here and would love some advice.

I have CF (I'm 34) and many years ago my family found out that one of my distant cousins who lives in France had a child who also has CF. Not surprising, yes? I've never met her. Anyway, about 5 years ago or more I was emailing with her, giving her advice about living with CF. I enjoyed the email relationship, and while I don't think I was super helpful via email, it was good for me to reach out to her and talk about my disease.

Today I found out that she will be spending the summer in the same city as me studying (she is 21).

The issue: There have been some emails sent around with various family members excitedly letting them know that she will be in town, CCing myself and several other local family members. While I am happy that she will be studying abroad in my city, I am also starting to feel a bit awkward if a well-meaning family member suggests a meet up or a family event for everyone while she's here. I would love to meet her in person, but feel very worried about infection protocol. Do we do the "3 foot rule"? Also, I don't think my extended family (or some of them) are aware that people with CF shouldn't really hang out with each other on a regular basis. It's making me feel like I'm not going to know how to handle the inevitable "Let's meet up!" emails once she is here from various extended family.

It's been years since I've been in contact with a CFer -- not since I was a little kid. My parents discreetly removed themselves from in-person family CF meet ups several years ago when it because apparent that CFers should not hang out together. I don't want to blow off the opportunity to meet her or at least acknowledge her visit. I know there could be a growing opportunity here, but I'm just not sure how to handle.

Any advice I would really appreciate.
 
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johncreasy

New member
Do you know what infections you have (ie. Pseudomonas etc?)

Maybe you should email her and find out what infections she is carrying and hopefully you have the same.

I would also talk to your doctor about it as each case varies, you could maybe also take some medication as a precaution.

It is a very tough situation as I can imagine you would love to meet her, but no one with CF wants any extra infections; especially on a holiday.
 
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ymikhale

New member
It is a difficult situation. I am in France at the best hospital (supposedly) and they still do sort of CF camps here and look at me with dismay when i have my dd w/CF wear a FFP2 mask during doctor's appointments (no separate exam rooms). All this to say that it seems that ppl in France are not as aware of cross contamination as they should be...So maybe if you explained simply what the dangers are and how it can cause a lot of prejudice healthwise to you AND your cousin, they will understand? If they don't, then I would say your health is not worth risking just to make family happy (i know i am a little extreme on this....).
 
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welshwitch

Guest
Wow, they still do CF camps in France? I did not know that.

Thanks for advice so far. Already feeling a bit better.
 
A

Aboveallislove

Super Moderator
The new rule is 6 feet! I think you should preempt it by emailing her excited blah blah blah and noting how you wish you would be able to meet in person, but given the danger you'd hate for her to get any of your bad bacteria and you could be all surprised "and i just found out the CFF recmmend 6 feet apart for all CFers now that they kno the danger." You could cc the rest of the family and maybe suggest a "sykpe" family event!
 
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welshwitch

Guest
Yeah, I think you all are right. Skype/email is probably the only way to go at this point. Wish it didn't feel so awkward….ugh.
 
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sroeseler

New member
I think with a mask is no big deal. But I have two sons with cf that spend every day together and they don't seem to share bugs ever, they always grow different and are sick at different times they don't wear masks around each other just when in crowds or confined space with other people
 
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ymikhale

New member
Just to add, in my experience you have to deal with awkward family/friends situations all the time when you /loved one has CF. I have some freinds who still have trouble remembering that my dd cannot come near cigarette smoke... Definitely wish we did not have to deal with this so often, but I would say you have to be firm since it is your health and you can't get it back...
 
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athletixbc

New member
If you do meet, both should wear a mask, try to keep 6 feet apart, and if possible avoid enclosed spaces. Meet outdoors if possible. Hope that helps!
 
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imported_MaggieB

New member
I agree with this whole-heartedly. It is to your cousin you must appeal. And it's six feet now! The last thing you want is to exchange bugs. It sucks, you know, but just tell any well-meaning relatives and Skype Skype Skype!!!
 
K

keefer11

New member
Since it is summertime, I would suggest having a family get together outdoors - a BBQ or something like that. You can bring your own serving utensils so you don't touch anything that is the same, and when you say hello don't shake hands or hug, just wave. If she seems like she has an infection just stay away or excuse yourself from the event early.

I have 2 siblings with CF and we've managed to not cross-contimate, ever. We all have different bugs. My brother and I hug, but its short and we both point our heads away from each other. Once I was in a job orientation for a week, and afterwards realized there was a person with CF in the orientation as well. What could I have done? There's chances of interacting with people with CF when you least expect it. For me, it's family, and I would want to meet her. Having a family member be able to relate to you is really amazing and I wouldn't pass up the opportunity to meet her in person and see if you click. But I'm on the less-paranoid spectrum, obviously. Granted, I won't go to a CF event or anything where there are a bunch of people with CF, but I will interact with someone with CF in a controlled environment, and to me, this is one you can totally control. But, I'm sure not everyone will agree with me.:)
 
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welshwitch

Guest
Thanks for the advice, Keefer! I agree, you could interact with people with CF multiple times a day and not know it. I'm curious, how did you know there was a person with CF at your work orientation? And how did you handle it?
 
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keefer11

New member
Welshwitch - I found out the person had CF through Facebook! We both were attending some CF event and had a CF coordinator friend in common. Small world! And then I did some internet stalking......:)

Have you made a decision of what you are going to do? I really value face-to-face interaction and as I said previously, I would do it and think its worth it. Sometimes a little risk is worth it, right? Having my siblings to talk to about CF and be able to relate to is a godsend and helps with the isolation, and if you are able to have a connection with your cousin, I think it will benefit you in the long run more than the risk of seeing her in person(but of course take precautions). Communicating with her via the internet just isn't the same as communicating with a person face to face. Not to say this forum doesn't help me, it just isn't the same.
 
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