What does life look like after CF diagnosis?

[Mama2Five]

Hi everyone. So while we're in the waiting period of finding out what exactly is going on with 5 week old (tomorrow!) and if she has CF or not, I've really been thinking. We have four other children, and up until this point, life has just been coming and going as we please--no medications, etc. Disneyland trips, beach trips (and sometimes staying at dingy hotels-lol!) camping, all of that.


I guess my question is, what does it look like after a cystic fibrosis diagnosis? Do you limit what you/your family (if it's your loved one with cf) can do? Do you try to stay clear of really public places or do you just go about life with a few modifications? Our daughter's Dr let us know that no, she doesn't want us to put her in a bubble but definitely use right judgment when it comes to public places and people with illnesses, and proper hand hygiene is the key.


We have a trip to Disneyworld in December that was planned last year (before baby was even conceived), and although we still plan to go, I'm nervous about what keeping her healthy looks like. I babywear, so she will be on me a LOT, but there's just so many people and for several days...so yeah, some input into this and your experience would be really appreciated.


Thanks!

 

[nmw0615]

I was diagnosed at 10 weeks, so I asked my mom for her input on how life changed. She remembers feeling worried, but also knew that she and my dad wanted to let me live a full life. I was never stopped from doing anything. We went camping in Yellowstone before my first birthday. I've gone camping every single summer and I just make sure to keep out of the direct line of smoke. I went to Disneyworld twice, once when I was 5 and again when I was 9. If I wanted to do something, as long it was okay to do it based on common sense, my parents let me do it.

The only time I was ever restricted was during cold and flu season, when we tended to avoid large crowds. We didn't become hermits and avoid them completely, but we used our best judgment to decide if the benefit outweighed the risk.

 

[Ratatosk]

Ds was diagnosed at about one week. Sure there were treatments, medications... But he went to daycare. Trips to Denver and the Rockies when he was 1 and 2. We travelled to Mexico for a wedding when he was 2 1/2. We've been to Disney 3 times. We'd travel to the city every 3-4 months and stay at hotels when he had cf appointments. Now it's twice a year. Things we do avoid..smoke. We once skipped a wedding reception after finding out it was held at a smokey venue.

 

[welshwitch]

As a child my parents liked to keep me away from sick kids. (Kinda hard if you go to public school Also, cigarettes, Southern California (they were paranoid about air quality) but aside from that NO LIMITATIONS. I went to college in another state, studied abroad in Costa Rica, and now I am 34 and work full time. So, like I said. I had a very normal life and continue to do so!

 

[ForeverDance]

When my daughter was diagnosed I was worried about a lot of the same things. I also have an older daughter who plays basketball competitively. We travel a lot and are in public places a lot. We learned and adapted. In public places I only worry about keeping her away from people who are visibly ill (coughing, running nose, etc.). As for travelling. It does change. There are things to remember to pack that you didn't need before. I remember being very stressed our first weekend away because I was so worried I would forget a medication. That's not something you can just pop into a shop and get. But we developed some routines that work for us and now I don't really stress about those things at all.

 

[mamaScarlett]

I'm sorry for the stressful situation you're in, no doubt you have many questions and what ifs about your baby girl. (congratulations on her birth, btw
I was diagnosed at 1 yr old, so Cf is all I've ever known. My situation is a little different bc I'm the mama with cf, to a 2nd grader, 3 yr old and soon a newborn. My children are non-cf.
I'd say we have a normal life. Its our normal. My main concerns are keeping myself healthy bc if mama isn't healthy, I can't take care of these little ones.
Life with Cf has taught me to be a very hard worker. To not have self pity. To set goals and take every step to attain them..and I learned this at a much younger age than my peers.
I do 2-3 hrs a day of respiratory therapy to stay healthy, exercise regularly, run half marathons whenever I'm able, etc. Its alot of work. And sometimes I do get sick and require IV treatment, which we work around
our life. It all works out.
As a family we do alot. We go to Disney at least once a year, we've been on many trips including a cruise and international trips, we participate regularly in volunteer work as a family, paddleboard, kayak, swim, surf...you name it.
The big difference in our life I'd say is that we have to be very careful around germs and crowds, and my children are also being raised that way. Being with sick friends, relatives is an absolute no no, and there have been times where we've had to just leave places because of it. Also we have to stay in a schedule probably more than the average family, because if that schedule breaks other things tend to fall apart.
If we do those things and keep the balance best we can, Cf is part of life, it definitely controls some choices we have to make, but its not our 'life'.
Best wishes to your family.

 

[Ratatosk]

When ds was diagnosed, we were overwhelmed with all the what-ifs. Was he always going to be the sick kid and miss out on activities, school...? Is he going to end up in the hospital several times a year? Would I have to quit my job and care for him? Do we have to get rid of the dog? Omigosh we have to do chest physiotherapy HOW many times a day? Prior to feedings, we have to sprinkle the contents of enzyme capsules onto a spoonful of babyfood fruit? How many enzymes? What does normal poop look like anyway? Medications how many times a day?

Our doctor introduced us to a teenager who was in the hospital having a clean out. She was NORMAL! Went to high school, had friends, had a boyfriend... We were told ds would be a normal child, just needed a few extra things to keep him happy and healthy -- CPT, enzymes... Eventually you get into a routine --- cpt and meds scheduled and it becomes 2nd nature. Last week both DH and I had to travel out of town and for the first time ever leave ds with my inlaws. I had 6!!! pages of information for them?! Stuff we just do off the top of our head. It's mind boggling to others, but it's our normal. Despite treatments -- ds goes to school, is in activities (gymnastics & swimming), we go to the lake on weekends, take vacations...

 

[Mama2Five]

Thank you all for the responses! Glad to see that all of you carry on and live life to the fullest. I'm also relieved to see that some of my feelings and questions are normal!

 

[leecee]

My daughter was diagnosed less than a year ago at age 12. I have not changed much, just that she has to take meds and do treatments. We even sent her to camp this summer. I am not going to hinder her teen years with what-ifs. Dealing with her friends and their drama, boys, etc..is enough so I don't want to add "freaked out mom" to her list. I think everyone has to figure out what works for them.

 

[Beccamom]

I am 38 with CF. I have two daughters ages 12 and 15. My 15 year old is treated for CF, but not officially diagnosed. We travel the world meds, vests, acapellas, and all. We live in the US, but have traveled to Canada, Mexico, Jamaica, Belize, Costa Rica, China, Japan, England, Ireland, Germany, Italy, Spain, Netherlands, Portugal, and Italy. We have traveled coast to coast in the US.

We have been to all the Disney parks (Disney World Fla, Disney Land Ca, Toykyo Dosney, Hong among Dosney, and Euro Disney France. Then only problem was Euro Disney due to smoking everywhere.

My husband is an airline pilot and we decided travel was the gift we can offer our children. What we do different is always bring TB masks when we travel. These protect against so many airborne illness. We carry back up meds (oral antibiotics) etc. I use disinfecting wipes on all surfaces around our seats on airplanes. I have an excel sheet for packing that I update for each trip.

Follow your doctors suggestions, but enjoy life. Enjoy your baby.

 

[TerriC]

Do not treat your daughter any different than any of your other children. We never ever kept our kids from doing anything - they both grew up getting colds just like every other kid and yes sometimes their colds lasted a little longer but they did not miss out on doing anything at all. My girls are now 28 and 26 and doing fantastic.

 

[imported_Momto2]

I was diagnosed at 3 months, back in 1971. My parents made sure I wasnt treated any differently (unless I needed medical treatment) and we traveled, went camping, did crazy stunts with horses. It was an incredibly full and varied childhood (of course mixed with lots of hospitalizations). But in between those, they were NOT overprotective and encouraged me to pursue sports in a time when CF kids were supposed to stay at home and not be active. I will forever thank them for that. Life is to be LIVED. Quality matters more than absolute quantity. Now, when I cant do as much, I have those memories, and it pushes me every day to try harder.

 

[nmw0615]

I have to agree with the previous two posters. I have a younger sister, without cf. The only difference in how my parents raises us was that I got an extra pudding cup (after my sister went to bed) for a few extra calories every day. Beyond that, if my sister would be allowed to do it, so was I.

 

[LittleLab4CF]

Don't expect the worst, just yet. At birth I was undersized and in 1950 this was worrisome. My CF is mild, sort of like a mild trampling under a herd of stampeding buffalo but the scale from goes from symptoms too mild or moderate as to escape diagnosis to newborn's who don't survive.

Treating CF as a fact of life is important for the parents and the children. Every thinking parent mulls over how best to be and act with regards to any special needs of their children. My mild CF is catching up with me but I have survived by the serial manner of my CF issues. My father kludged an oxygen/steam tent that I slept under until age 12 and occasionally afterwards. It went up at bedtime and folded behind the bedstead each morning. This was my pulmonary stage made of one continuous lung, bronchial and head infection that waxed and wained. By twelve, my lungs were scarred but infections had cleared. Aside from bronchiectasis, my lungs are still working fine. My issues moved to the GI tract and were treated like several annoying but workable/treatable things like GERD and IBS.

So little fuss was made and my parents nipped any questions or gossip about my health, preemptively. It was common to have "Sick Houses", maybe a family caring for a polio patient or veterans who were crippled and disfigured. Everyone, everyday went "ahh" for the nurse before entering school and got a throat swab/ticket home for the day.

Almost to the person, late diagnosed CFers are happy for the undiagnosed years. No terrified parents overreacting to all their coughs and tummy aches. If there was any difference in how my totally healthy athletic older brother's rearing and mine, it was lost on me. My parents held a high standard and in hindsight they were holding just beyond each child's grasp.

I have no idea what it is like to be free of nausea and I've had a stomach ache going on 65 years. " David! If you're sick, you can stay home. But you stay in bed, no toys just school work and books". Most days I knew I really had a choice of staying in bed or going to school feeling bad either place. And when I really was weak with infection, I was not worried about staying in bed, it felt good.

This simple means of putting the decision in my hands showed me that the decision over how I want to feel has always been mine. Pain and nausea can submit to mind over matter, suffocation and toxic buildup obey finite laws of nature and therefore, medical intervention.

CF is as bad as you've been told and the mother's who've shared how much more involved adding CF could easily happen so be prepared. That said, CF diagnosis based on genetic testing, is a small part of the picture. Mammalian genetics is famous for not following the rules. CFers can be asymptotic or free of symptoms all the way to needing a Double Lung Transplant (DLT) at ten or other organs like a liver or kidney.

From the viewpoint of a sixty four year old CFer, I'm not absolutely sure that I would choose to be CF free if my life could be re-done. Nobody would want a do-over with severe CF but most all CFers are living with the same hypermetabolic sense of life.

Maybe it's the fact I'm a happy person by nature but one reason CF probably wasn't suspected sooner had a lot to do with my boundless energy. Had ADHD so intense if the condition had a name back then, I might have been a poster child. In retrospect I believe that the stresses of CF put me in a chronic fight or flight state and my brain spent its life on speed.

My whole life has been a gas. I've had more fun than any five people, honest! Your newborn may live life to its zenith. I've traveled like few others, totaling 39 countries, spending over six years engaged with the people of these countries.

Don't even think that your baby is fated to suffer or be limited in any way. CF is holding medicines that are true genetic drugs, that work. One that specifically stops the symptoms in a mutation set common to four percent of the entire CF community is FDA approved for mutation G551D and very soon Kalydeco will have full FDA approval as a CF moderator drug, helping many CFers with different mutations. Half a dozen similar genetic drugs are close to approval holding the promise that CF will end the symptoms of most CFers. And the younger a CFer is, the more complete are organs that can become healthy.

Watch and wait, don't make it more, or less than the presentation of any issues vidates,

LL