Question for people who were dx as adults

[JennifersHope]

I was just wondering for those of you like me who were dx as an adult how involved your parents are in your CF life?

My dad is very involved because a few years ago I moved in with him so that I could go to school, and because where I was living I was not able to go back to live because I was to sick. Anyway, my dad has a pretty good understanding of what CF is from a pathophysilogical perspective, but he knows really well what it entails as far as me being sick all the time and doing treatments, home IVs, hospital stays etc.. He even knows when I need IVs or when I need a treatment.

MY mother, she lives in Fla. She knows that I have CF and Addison's, she knows I am in the hospital a lot and that I do the "shakey thing" I always knew that she didn't really get what my life consists of but my last conversation with her was the topper.

My mother, (who I love very much and don't want anyone to say anything bad about her because she hasn't taken an active role in my life as of yet, but I know she is trying) was talking to me on the phone the other day, she called me to tell me tabout a recent conversation that she had with a nurse that was at her pool the other day.

I guess my mom started chatting with her and the women must have told my mom she was a nurse manager at a childrens hospital... My mom started telling her about me being a nurse, that I have CF and Addison's

My mom went on to tell me how impressed that the women knew what CF was and what Addison's disease was, my mom said, she even asked if you the "shakey thing"

This is when it hit me that my mom doesn't really understand CF or that she has not even researched it, the women said to my mother, "why you must be close to a nurse yourself with all the care that you had to do for you daughter when she was little"

My mom turned around and said to her, Oh NO she didn't catch CF until she was an adult, when she was little she just had pneumonia a lot."

My mom said the nurse just gave her a real funny look and got up to go in the pool .

I tried to tell my mom it was genetic.. again...

I am not upset that she doesn't know, actually I am kind of glad that she doesn' really understand CF because it doesn' ruin her life or anything because she doesn't worry about me.

It just led me to wonder how many other of us who were dx as adults, have parents that don't understand the disease.

Jennifer

 

[Debi]

My parents didn't really understand the whole thing about both of them being carriers, which resulted in me having cf. They fretted most of their lives that they had done something wrong to cause me to have all this respiratory trouble. Since I wasn't officially diagnosed until about 9-10 years ago, they were already in their 70's. Of course, they were very involved in my care as a child - just didn't know I had cf because the sweat tests always came back negative. The docs treated me as if I had cf without a formal diagnosis. My parents made sure I took all my meds, stayed healthy, stayed active. They treated me as if there wasn't anything I couldn't do. Did percussion when I got junked up, but CPT wasn't a regular part of my childhood routine. I married when I was 23, so my husband and I took over all responsibility after that. Parents supported us by housesitting, babysitting, and hand-holding during hospital stays. My mom died of pancreatic cancer (isn't that interesting), and dad had a stroke and is now in a nursing home. He still worries about my health all the time, bless his heart. I am careful about touching stuff in the nursing home, and they have automatic handcleaner dispensers everywhere, which he is always reminding me to use. At 87 he is still taking care of me! I was truly blessed with two of the greatest parents on earth and I always let them know it.

Your story about your mom was cute. I wish she could be closer to help you, but I'm grateful your dad is there for you. Be sure to thank him often.

I am dying to hear how the NCLEX went. My husband will be taking it in a few weeks.

 

[Diane]

well, i was diagnosed at 3 and my parents had no idea about cf till I myself started explaining it to them as i got older and started to understand it myself. Unfortunately my parents were given some wrong info by the Doctor that diagnosed me. He told my parents i had it so mild i would outgrow it and i guess they felt safe and secure thinking i would "outgrow" it. To this day i ask my mother how in the world she as a nurse could have swallowed the info that anyone could "outgrow" a genetic disease. She told me at that time ( late 60's) noone really knew anything about cf and she asked the doctors where she was a nurse and even they had no info for her, so she believed whatever she was told by my doctor. As a child i never did any treatments, or had any real problems with my cf Thank GOD!!!! But when i was diagnosed with b.cepacia at the age of 32 i think thats when we all ( my parents and myself) got a real dose of what cf can do. Until i was diagnosed with b.cepacia i was in the very mild catagory with cf with very high pfts. Once the cepacia settled in i started learning more and more about cf and i feel almost as though i have been "adult diagnosed". I have learned more about cf in the last 9 years then ever in my life. I truely never realized how serious and unpredictable cf can be till i started having problems with it. I still have trouble bringing myself to tell my parents the "reality" of cf, because all their lives they thought i was going to "beat this" , and each time i wind up on an iv or when i had to have my 2 embolizations i think it brings to them the reminder that this isnt something i am ever going to beat.

 

[Momtana]

My parents died at 86 and 85, a year before my diagnosis. Sigh.
Debi - my Mom always worried that she had done something to cause me to be so sick. I have four older siblings who were healthy kids. I am sad we didn't have the chance to talk when they were alive. My Mom has come to me in a dream, briefly, but paused to say "I know".

 

[Momtana]

My parents died at 86 and 85, a year before my diagnosis. Sigh.
Debi - my Mom always worried that she had done something to cause me to be so sick. I have four older siblings who were healthy kids. I am sad we didn't have the chance to talk when they were alive. My Mom has come to me in a dream, briefly, but paused to say "I know".

 

[AttyMom]

I was dx at 25...after many years of sweat-tests and suspicions.
By that point I was in law school and would be married a year later. I now work with my Dad so he knows what I go through and always asks about my appointments when I get back to the office. My mom unfortunately passed away only 3 years after my eventual diagnosis at a point when I had not yet had a cleanout and was not on any meds.