Father Dx

[anonymous]

My father is 58 years old and just diagnosed this year w/ CF. He has had intestinal blockages his whole life, diabetes for years and recently battled with several awful cases of pneumonia. This finally prompted one of his doctors to test for CF. He tested positive and jumped right on the wagon to do treatments and visit John's Hopkins. He seems to be doing really well physically (gaining some weight and going on lighter/different diabetes medication). However, I feel like he is very down about the whole situation. For one, if someone had looked at this possibility sooner, could he have avoided the over a dozen surgeries to remove intestinal blockages? Anyway, he is remaining positive to me (brave face). Although I'm sure he talks to my mother about his feelings more.

I feel selfish, but I'm also curious about what this means for me. I'm 26f and am married and wants kids some day. Should my husband and myself be tested for the gene mutations? My little sister has had pneumonia bouts for her entire life. No one has ever thought about CF, but maybe she should now be tested? Also, my older sister is a childhood diabetic. Does this mean anything?

I'm so new to this disease. I feel like there's such vague information on the internet and I don't want to pester my dad about what he's learned. I feel like it might make him sadder to talk about it. One thing that weighs heavy on my heart is that, while it is awesome that my dad just now is dealing with the horrible symptoms and time-draining treatments, does this give any indication of his life expectancy? I want to believe that my parents are invincible and this is creating a bit of a dent in that armor. Are there any old (like, 80s) CF patients out there? Can I hold hope that my dad will be around to watch my children grow up and go to college? I want to learn so much and feel as though it's hard to find a starting place. Can anyone advise?

I'm sorry for the multiple questions in one thread.

Thank you for any words of wisdom you might be able to offer.

 

[candiebar76]

Did your father have the DNA test or just the SWCL? I am wondering because it seems that it is easier to get testing done for "carrier" screening and other possible CF family members. If it were me I would deffinately get tested before having children and I would advise my siblings to get tested soon as well. In any event you are just making a well informed decision that will benefit your family.

I just have to say wow! <div class="FTQUOTE"><begin quote>58 years old and just diagnosed this year w/ CF</end quote></div> That seems amazing. I hope he will continue a long prosporous life.
Candace
looking for the answers

 

[coltsfan715]

I agree with Candace with the WOW at being diagnosed at 58. I hate that he was having so many issues before but that is great that he was doing well enough to go undiagnosed.

I personally would get tested as his children - and your spouses if you are concerned to have a child with CF. Regardless you and your siblings should all be carriers ... since your dad has 2 genes for CF you will automatically get 1. I would be tested just to make sure that you and your sisters do not have CF and go undiagnosed as your father has.

There is no telling with life expectancy, he will probably do better now that he is able to receive treatment. Even if there are no 80 yr old CFers out there now ... it doesn't mean he can't still become one, someone has to set the mark <img src="">.

Lindsey

 

[2005CFmom]

Because your father has CF, all of his children will carry at least one CF gene. So you, and all of your siblings are CF carriers (atleast).

Your spouse can be tested to see if he is a carrier. But be aware that there are a few different dna tests out there. One only tests for the most common 30-50 mutations, and I think this is the one most common covered by insurance. There are some that test for 1000+ of the known mutations, but you may have to fight to get that covered.

Since your sister has displayed some symptoms she should definately be tested for CF. If she does have CF the sooner she can start treatment, the better.

As for longevity.....I have heard of a few living into their 70's. I'll try to find their wesites and post them here.

But since you dad has been diagnosed so late, it appears the his CF is progressing much slower than the average person. CF effects everyone so differently, it really is difficult to compare cases.

 

[miesl]

I'm going to be a bit repetitive here...

You and your siblings are, at the very least, carriers. You should ALL be tested to make sure you do not have CF.

Your husband and your siblings spouses and children, if any, should be tested.

If your father was diagnosed genetically, you should find out what his mutations are. They will help determine which genetic test you should start with. If they are rare, you may have to skip the test for the most common genes and go straight to Ambry or Quest (extended panel testing).

 

[BigBee]

I too, am an adult whose father had CF and he also was diagnosed as an adult.

There is a lot of great information on these boards, but there are few adult children of cfers on here. So, I welcome you from that minority group <img src="">

I have found that while I usually don't have a lot to offer posters, I have gained a ton of insight into the spouse perspective (helps me see where my Mom might be at) and also the CFer perspective.

I'd be happy to chat with you and share my experiences....feel free to PM me.

And yes, there are a very few CFers who have hit late 70s - not many, but I bet your Dad is well on his way! The 04 data showed the oldest registered CFer at 74 years old.

 

[Alyssa]

Ditto Ditto ~ test everyone ! especially the one with pneumonia!

Yes ! You can entertain the idea of your father living to 80 ~ yes there are several who make it into their late seventies and I am pretty sure there was at least one woman who was over eighty ~ not everyone attends a certified clinic so they aren't always "registered"

One such "old guy" ;-) is Hal Soloff. He sees a pulmonologist not at a CFF clinic ~ he has mentioned before that he will not "be counted" in the register. I believe he is now 75 or maybe 76 and posts on cystic-l. He has told me in the past to just google his name and there are several hits on his name with different stories about his life ~ some newer than others, most written by him (that I can tell anyway). He has lead an interesting life and is very fun and informative to talk with.

 

[Landy]

Here is a neat website on a CF patient that has passed, but was the oldest living U.S. CFer at the time of her death (from what I was told). The website was put together by her son. I thought he did an amazing job on the website.

<a target=_blank class=ftalternatingbarlinklarge href="http://home.donaldshores.com:22/alivingmiracle/
">http://home.donaldshores.com:22/alivingmiracle/
</a>

 

[kvandewege]

I'm blown by the amount of responses. Thank you so much! This is my
post (forgot to log in the first time). This is a tough time and
I'm trying to gain as much knowledge about the disease as possible.
I'm definitely interested in talking to others and learning from
the group. I really appreciate the responses; they gave me hope and
some good ideas on where to go from *here.*<br>
<br>
My dad went to Johns Hopkins last week and found some good news. He
can now eat whatever he wants in moderation - he had been on a
diabetic diet. But as long as his blood sugar numbers stay
regulated, he can finally eat that chocolate he's been dreaming
about. He also found out that he has two very, very rare mutations.
So when my sisters and I get tested, we'll probably have to take
the more expensive, more thorough test. But it's worth it!<br>
<br>
I think my dad kept the disease at bay partly because he has always
lived a very healthy lifestyle. Never smoked, overdrank, or really
any bad habits so many of us have. Plus my mom keeps the house SO
clean (I wish I had inherited that trait!) so he's never really
been subjected to too many irritants at home (except 3 daughters).
But he's also been very proactive since finding out and he's
religious about his treatments.<br>
<br>
I hope I can keep my hopes up and my thoughts positive. I plan on
reading here regularly because I really have found that there is
more info on this one site than in all the ambiguous articles on
the web. Thanks again for all the responses! Have a blessed day!