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Grandma's Got CF??

Saturday, February 11, 2012

"Grandma's Got CF?"  This is the question my family has been asking each other since we heard this could be true.

Wait, could Bennett's 85 Year Old Great Grandmother Seriously Have Cystic Fibrosis??

You won't believe it but there is a very real possibility she does -
so much so, that her new Pulmonologist is a Cystic Fibrosis doctor...
that he has already ordered her the Vest...
that he has already placed her in the CF Registry...
that she's in the hospital right now doing a "tune-up" (what CFers call a hospitalization with a round of multiple IV antibiotics)...
that she's already cultured psuedomonas.

Here, before I go any further, let me explain some of the back story...

There is one thing I have never shared publicly about Bennett having Cystic Fibrosis.  It's probably one of the most disappointing things for our family that has come out of this disease.

And it is this:

Bennett's maternal great grandmother (whom we call "Grandmom") has never held, hugged or kissed Bennett.  And to do so would put his health at serious risk.

I honestly could have never dreamed something so unfortunate - for a great grandmother to never hold her great grandson - and for a great grandson to never be kissed by his great grandmother, even though both of them are alive and well.

Grandmom is the only living grandparent on my side of the family and has been for a very long time.  My family, myself included, are very close to her and love her tremendously.  So, it's beyond logical to me why something so ironic would happen to her and Bennett at nearly the exact same time, before either of them every met, forcing us to keep them physically away from each other.

Around the time of Bennett's birth and CF diagnosis two years ago, we learned that my grandmother, who had been most recently fighting lingering lung issues, had gained a diagnosis of her own.  She had cultured pseudomonas aeruginosa.

I knew as soon as I heard my mom share with me her diagnosis what that meant.  Since Bennett was still a newborn, I knew very little, at the time, about Cystic Fibrosis.  But I certainly knew that that was a bad word in the world of CF.

"Psuedomonas," as it is nicknamed, is a bacterial lung infection that typically affects only those who are immuno-compromised (the elderly) or those with damaged lung tissue (those with CF).  (It rarely affects healthy people.)  Psuedomonas is often highly resistant to antibiotics and can be fatal.

This is why Cystic Fibrosis patients are encouraged to stay 4 or more feet away from each other - to prevent transferring serious antibiotic resistant illnesses to each other.

For a long time, my grandmother's doctors tried to help her.  Everyone in our family believed that this was likely acquired because she was older and could potentially be eradicated if she got well.  But, unfortunately, she continued to suffer.

Personally, I was surprised to see her doctors did not give her TOBI and other medications I knew were on the market for treating psuedomonas.  But, I think, the doctors kept thinking this was all fairly normal stuff.

Eventually, my grandmother's doctor suggested that she visit the CF Pulmonologist near her home in Mississippi.  This was the very best thing she could have done.

After examining my Grandmother and ordering multiple tests, he became suspicious that she, too, could have Cystic Fibrosis.  At first, it was laughable.  How could Bennett's 85 year old great grandmother have a disease that so many learn they have in infancy - a disease that kills fifty percent of those who have it by half of her age??

But as time went on, and as the doctor kept looking closer, we all began believing that this might not be completely off base.  The truth is, more and more people are being diagnosed with Cystic Fibrosis later in life.  They are calling it "delayed CF". (see: http://www.msnbc.msn.com/id/37834646/ns/health-health_care/t/aging-cystic-fibrosis-more-adults-diagnosed/).

My grandmother's genetic testing shows she and Bennett share his 621+1G>T mutation.  She does not, however, have the other mutation Bennett has, which is DF508.  In fact, preliminary testing does not show what other mutation she may have.

The CF Pulmonologist has said that either my grandmother has a missing mutation that has not been identified.  Or, she has an unknown gene mutation that is causing the symptoms of Cystic Fibrosis to be expressed.

My grandmother could either have more extensive genetic testing done or none at all.  (Sweat tests are inconclusive due to the inability to get enough sweat.)  But the doctor has decided not to delay getting her care.

Since her symptoms are so classic of those with Cystic Fibrosis, the doctor put her in the hospital for a week to be given IV antibiotics (she will finish the rest of them at home).  The doctor has ordered her a vest and a nebulizer, which she will use multiple times daily.  And, the doctor, has placed her in the CF registry (something that happens with all CF patients) so that her case can be used for further research among doctors throughout the country.

Since we live two states away from each other and I am unable to visit her right now, I don't have pictures of my grandmother in the hospital (although I did hear over the phone the sound of her getting her "pat-pats," her hand percussion therapy given by a hospital respiratory therapist in order to break up the mucus in her lungs).

In fact, I haven't seen my grandmother in almost a year.  This is because we cannot bring Bennett to my grandmother's home (too much risk of infection).  And she can't come to our home (again, the risk is too high).  We have been able to see her briefly a few times since Bennett has been born.  But it's been in a public place and we've had to keep them a part.

I won't lie that my heart is broken over the fact that keeping my son well prevents his Great Grandmother from being more physically involved in his life.  And my heart aches to know my grandmother is fighting for her ability to breathe while I am unable to travel to see her because I have my own little guy's breathing issues to care for.

But, all is not lost.  As a family, we have decided to make way for Bennett and Grandmom to see each other, if only for a short time and if only from several feet away (we've once met at restaurant and once at a mall).  Our once often family gatherings have significantly lessened.  But we will continue to find safe ways to make it happen.  (Maybe as Bennett gets older and can be willing to wear a face mask, Grandmom and Bennett can be in each other's presence more safely.)

Nonetheless, I'm so proud of my grandmother for being the fighter that she is.  She now has a connection to Bennett that none of us have: she actually knows what Bennett is going through! (Can't wait to see Grandmom wearing her new Vest!)

And by golly, if my grandmother is going to have to endure life like a CF patient, I'd love for her to be officially diagnosed one...likely the oldest person with CF diagnosed ever, I'm sure!  But, we'll see.

Nonetheless, my sister made the joke that this year at our annual Cystic Fibrosis 5K Walk fundraiser, we might not just be walking for Bennett.  This year, we might just be walking for Great Grandma too! :)

3 Responses to “Grandma's Got CF??”

  1. This is very interesting about your grandmother. We will be praying for her, as well as Bennett. Hope you all are well, I enjoy seeing pics of your precious boys!

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    1. OOPS! The above is from Carrie Miers!

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  2. Now that is amazing!! I hope she gets better soon, of course, but just too crazy they may have that in common. Thanks for sharing!

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