Hi there. I have been a member for a while but thought instead of
simply "lurking", I would actually post something.

On one of our first dates, Robert told me that he loved me but he
knew as soon as he told me something, he knew he would lose me but he
just couldn't tell me. Then he said, well, I have a disease. I told
him not to worry, I already knew he had asthma and diabetes and I
could deal with that, no problem. Then he told me he had a fatal
disease. All I could think of was AIDS because at that time, that
was the big thing. So I held my breath and asked him if I or anyone
else could "catch it" from him. He laughed and said no. I told him
that in that case, no problem, we'll deal with it. Later that night,
I finally got him to tell me he had CF. I was so relieved it wasn't
AIDS that all I could do is hug him and tell him we would deal with
it. As soon as I got home that night, I opened up the encyclopedia
to see what CF really was and I really freaked out. Of course, the
encyclopedia was really old and was using old information. It
indicated that it was a childhood disease, etc. etc. So I called
Robert and told him what I found and he laughed at me! Then, he
explained more to me and also explained that they had lost his only
sister when he was only 6 and she was 8 from CF. From then on out, I
have strived to find out more and more about CF.

We too no longer take life for granted. When Robert and I first met,
he could do just about anything he wanted. Now, he can only do about
¼ of it and it really drives him crazy. He is so used to be
independent and he is having such a rough time depending on others
for help (especially me).

He is on the list at Johns Hopkins in Baltimore, MD for a double lung
transplant and he is on IVs about every 3 months. When we first met,
he went into the hospital twice a year for "tune-ups". I always
thought that was so funny but it really is like a tune-up for a
vehicle! Now, he does IVs at home and even goes to work with them
and does yard work. He uses the IV balls that fit into his pants or
jacket pocket or he wears a "fanny pack" and has the IV go right up
his sleeve.

I enjoy being a part of this list because I have found that it is so
much better knowing you are not alone in what you are going through
and have lots of new ideas on who is doing what and how you might
want to try something different (with your doctor's OK, of course).

As you can see, I could go on and on but I'll sign off now – I was
just so excited that I had SOOOO much in common with Shan and Kel
(and probably lots of others out there!)

I am happy to provide other info like what kinds of procedures, meds,
daily routine Robert has etc etc….

Tammy (28 non-Cfer), wife to Robert (35 Cfer) since 1997 but together
since 1994 and mom to Jessica (adopted at birth, age 4)