Latest on Kerry

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It's hard to know where to begin regarding an update about me.

Hmmm. Well, just over a year ago I was playing ice hockey and

threatening the lives of respiratory therapists when they wanted to

give me O2 to keep up my sats at rehab. Rehab that I enrolled

myself in just to make sure I had done absolutely everything I could

to make myself the healthiest me I could be. I did get a pulseox in

order to try to be more realistic in my activities and not be doing

damage to the rest of my body by pushing myself too hard. I joined

this group just before that to do more online research (maybe find

feedback from actual people living w/ the disease I read on my

charts, find out something that actually applied to me). February,

I flew out to Cali to visit family and though I had given up hockey

because my O2 was dropping too low, I was still working out at the Y

with 5 group classes a week and running around after my kids and

still doing it all. Severe and completely debilitating coughing

attacks were my big, big complaint. I was trying to knock out all

additional possible coughing culprits and making sure I was doing

all I could in spite of the IPF. The coughing attacks kept on and

the sob increased and the recovery time when my sats dropped

increased. I tried nebulizers, flutter valves, postural therapy to

try to focus on addressing the Bronchiectasis. None of that has

really helped. I got all the bloodwork repeated to rule out any

additional diseases, got back on allergy meds, got an upper GI and

w/a small hiatal hernia and slight GERD I started taking Prevacid.

I went for a 2nd opinion. No improvements and nothing new learned

and all along I've been in a downhill slide w/ my diffusion. I

finally gave in to getting O2 in August and finally actuall gave in

and started using it almost full time in October. I was only taking

it off to do my group classes at the Y. That went on until the

weekend after Thanksgiving (right after my last post about Judy's

lung collapse). That weekend my mother passed away. Sudden and

shockingly and without any real explanation (after the fact we'll

assume heartattack or arterial sclerosis). I was away from the Y

and exercise for 2 months. I am finally back to exercise but I

can't do anything w/out the O2. In fact, I'm getting back to

borderline anxiety attacks because of the O2 dropping. It drops w/

every move. My diffusion is 20% and so pump in all the O2 you want,

it ain't getting thru and when it drops it's very scary. I would

never even discuss transplant, that was not an option as far as I

was concerned. Now, that's my option. I am doing the battle w/

disability and still waiting on the final word there. I have been

referred for transplant, met w/ the transplant pulmo and am set up

for eval. next month. I have become much less mobile and much more

reliant on others. My husband has totally changed his work schedule

to take my daughter to school each morning and I almost had a

breakdown the other day in anticipation of him leaving town for one

overnight trip. It's just so amazing what a difference a year

makes. This is sounding like a sad email which is the wrong note to

end on. I am totally bummed about the difference of the year and

the decline and it's effects. I am however going into the

transplant w/ nothing but positive thoughts. I am a very strong 37

year old w/ no other health factors and a huge support system and as

I told the transplant pulmo I plan to be the poster child success

story and kick ass at the transplant games! So there. Off to go

carry my sleeping 3 year old to the car, have a panic attack about

not breathing, pick up my 6 year old and then check on Joyce.

Off I go,

Kerry

IPF '01

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