Cystic Fibrosis ...
There are many sources of info for cf on the internet. Read my
links page and you will find several! This page
is for those who wish to know about end stage cf. I'm hoping to
get listed for a
lung
transplant--I'm truly very optimistic! However, this page
is not intended for someone whose child has been recently diagnosed.
I have had a wonderful life. (and it's not not too damn bad now!
hahahhaah!)
Cystic fibrosis: basically the gene defect is too much salt--thickens your mucus--clogs up all your organs--and eventually destroys your lungs. Also affects --and can be equally destructive--to the liver, pancreas etc. The complications are innumerable and diverse--for more detail--check my links page. *medical disclaimer--I'm no doctor! Read at your own risk!
I
have always known I had cf. It is my first memory. I was sitting on my dad's
lap, I guess I was about 3 or 4.He said, "you have
cystic fibrosis." Only I thought he said,"you
have 65 broses." So I asked him how many he had! I was quite healthy
and had a completely normal childhood. I didn't start going into the hospital
for the regular "tune up" (two week stay in hospital for i.v. meds) until
I was 21 years old. I went to work for the
Cincinnati Police
Department where I remain as a Police Dispatcher. I am on extended
leave awaiting--hopefully--a lung transplant .
The question most people want to know is: how long do you have to live?I know that, cuz It's been my question also! hahaah! Seriously--probably a year .. I'm just guessing of course, but you are not recommended for a transplant unless you only have 1&1/2 to 2 years to live.I was told last March that a lung tx was my only option.
My health declined gradually . I really felt perfectly "normal" until
the last year or so. Suddenly tho-it became difficult to walk up the stairs
to get to my apt.
I realized it was getting "near the end." Still thinking I would have
at least 3 years I initiated plans to move home & save
money.(This was a shock for my folks--they never thought I'd be sensible
enough to move home even as a medical necessity!) Unfortunately as I moved
home I became very ill. I ended up in the hospital and when I got out I was
in a total downslide. Two months later I was on 3.0 liters of oxygen full
time and could no longer work. I lost my apt, my independence, my livlihood
and the ability to breathe on my own-- literally--overnight.
No one warned me it could happen like that...
So!
Now What?
Well, physically it is a struggle. I can't do much--changing clothes leaves me literally breathless. I can only walk a few feet w/o resting. I have a gtube (feeding tube) inserted so I can take nutritional supplements. I have a port (surgically inserted iv) for the frequent iv medications. I get tangled at times walking about with my oxygen (which I wear even in the shower-it's a necessity.) To say I am thin is an understatement. I spend approx 5-6 hours a day doing aersolized treatments (inhale stuff so I can cough up the stuff clogging my lungs.) That's the time consuming part. There's more--sinuses and joint "clubbing" and glucose intolerance and osteoporosis and anemia...but that care-so far--is not time consuming. *reminder, each case of cf is different with its own set of problems!
Mentally--I lost my entire sense of self. I went from having a role--"dispatcher" to--nothing. I went from being a reasonably attractive girl to this person who is just skin & bones. I had the longest bad hair day (3 months) of my life..and it didn't even matter. I realized my life was over already. The life I had, anyway. So--sometimes you just cry. You teeter on the edge of a precipice. It is dark and frightening and you feel you can topple at any moment. I have occasional anxiety attacks--out of the blue I get fearful and stressed. I am told by my doc's it is normal. I fear the unknown--the ventilators that loom in my future...the suddenness with which my life will be snatched away.
However, there
is an upside. (really!) I always knew I had this thing,and subsequently I
enjoyed my life! I have the photo albums and the memories to prove it! I
appreciate the simplest things--being at home. Taking a shower without an
"accessed" iv. Not wearing an oxygen mask and enjoying hours of sleep
in a row undisturbed by coughing.
I have few regrets.
I am grateful for the resurgence of hope I felt after reassessing the pros
and cons of going for a lung transplant. Hope is an essential component to
the human soul I discovered--at least mine!
I am grateful in my firm belief in an afterlife..and in my capacity for denial! Because even as I type this I know that I will be here tomorrow..sure I will! And, in the end, that's the weird thing about being told you are dying. Knowing--you are dying. You are still surprised that--you are dying! And that's the greatest gift of all! Still thinking it will happen tomorrow... that there always is tomorrow!
(push for update)
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