Its me Becki ! ! !

[Guest guest]

Hi ! ! !

Greetings from Florida. I haven't been active on the boards for

awhile. My email has been so screwy and during one of my hospital

admissions they accidentally sent my cell phone to laundry. I lost

everyone's names, numbers, emails, addy's, etc.

I am not sure what happened but when we switched to Comcast, the

entire package deal all-in-one, I've had horrible email issues. It

made online courses this semester difficult.

Health wise we are ok. Brad's was pretty sick for awhile and his

kidney's failed for awhile b/c of the IV antibiotics he was on. His

Kidney's are ok now and his lungs are sounding much better. He did

lose a lot of his hearing from all the ototoxic antibiotics. He also

seems to like the new restaurant he is working at as a manager, What-

a-Burger too.

We should know soon if he got the position in Levy County as a

deputy. It's a very large rural county. Gainesville is right near

there with the University of Florida and Shands. That way if there

is an emergency, they are both a large Lung TX facility and CF

center. We won't be far from ville either.He graduated the

police academy a year ago but b/c of the CF, he's had a hard time

finding someone to look over the CF.

Levy would really be a good prospect in that the cost of living is

much cheaper, thank goodness. We've found some rental properties we

like and are larger than the apt here but cost a few hundred less a

month. Plus, it is a safe area with very little crime. In that

aspect his duties will most likely involve handing out speeding

tickets and small stuff like that. He is really excited about it and

I really hope he gets it. They only do a 3 to 4 day work week, so he

will get more rest. It will also give him a lot less hours to work

and at least 3 days off a week.

He's gotten other dept's to hire him but once they realized what CF

is, they never returned a call or would call back saying they

changed their minds.Even after giving him the offer and everything.

Hopefully, the job itself will also give him an extra an incentive

too really get a few good work-outs a week at the gym. That will

keep his lungs clearer and his function up. He goes to the gym now

but, he goes through fazes where he isn't great about going

consistantly.

He has always been very consistant about his nebs and

vest.Hopefully, maybe he'd up his vest treatments too.

As for me, the county and surrounding areas have plenty of community

colleges I can finish my pre-req's there and then I can

automatically transfer to UF to take the last few courses to receive

my BS. I am looking at either a major in Health Sciences ( pre-med

and the like program ) with a minor in Micro and Molecular Biology

or the other way around. It all depends. After the BS, I want to get

into med school but it depends on health issues at the time. I have

plans A - Z, so if one thing won't work I can fall back on another.

I really want to get into some Genetic Research and whatnot.I really

want to go to med-school. Its my main objective. However, I am

looking at a smaller program like East TN State and whatnot. I would

go somewhere elsewhere. I have never been able to really feel at

home in Florida.

As for my health, same old same old. I am 2 years and 3 months post

double lung transplant and PFO repair.I have been in chronic

rejection for about a year and a half. I do currently have an

infection that's in my blood stream from a central line I get

photopheresis through. My veins are still shot and they cannot do

the treatment through my port so they had to tunnel a catheter under

the skin and over my collar bone and then out from under the skin.

The photopharesis is sort of like dialysis for the blood for people

with chronic rejection.

Your blood gets pulled out through one lumen in a large IV tube (

kinda like a big straw with two smaller straws inside of it ), sent

through the machine, radiated with light to kill and remove all of

the inflammatory cells that are causing the chronic rejection and

then it gets pumped back into me through the other catheter. It

doesn't hurt, it just takes a couple hours to finish all 30 cycles.

I just go to sleep or do homework. They usually let me stay and

sleep through lunch..I don't really eat so . . . Naptime

It will take several months before we know if it is helping . . . my

last PFT was holding steady so thats good.

I don't really feel sick from the rejection. At first when it first

happened I noticed I was a little short of breath and I had

developed a productive cough, but that has been over a year ago now.

I am pretty much used to it all now.The only thing that bugs me now,

is that I get worn out a lot faster and easier than right after TX.

But I still go to school ( Im in my 4th or 5th semester ), go to the

gym ( if my stomach doesn't hurt too much ), climb stairs, etc. I

knew something had been off for quite some time, so when I first

found out about the rejection in September, it wasn't a big deal. I

know so many with Chronic Rejection that have it and have had it for

a decade or more, I just figure that new things will be coming down

the pipeline every couple years or so. I still cannot compare me now

to pre-TX. Back then even my skin hurt and I needed a bucket to

cough into instead of a tissue. Coughing up blood was as common as

just clearing my throat. Now I just get a little winded and take

naps....lol

No biggy ! ! ! Although I wish I could still say I had PFT's in the

90's. Oh well.

My biggest advice, if you think you may have

Reflux/GERD/Indigestion, get it looked into ASAP and taken care off.

It can really eat your lung function up in no time at all. I was on

Prevacid 30mg twice a day and was still aspirating into my new

lungs. The only major symptom was a productive cough. I had

gastroparesis so my stomach wouldn't empty. I had it pre-TX. When

food and pressure built up inside the stomach, it just went the only

way it could.... up ! ! !gone.

As soon as they did the Nisson the constant horrible cough stopped.I

still cough but until my stomach wrap, I was on major prescription

cough suppressants post-tx. I have had issues and need to get my

esophagus dilated every 6months or so to be able to swallow at all,

but if I had not gotten the procedure done, my lungs would have been

completely ruined.

I had the gastroparesis fixed surgically at the same time with a

pyloraplasty. I still have major Gut issues involving my pancrease

and gallbladder and obstructions, but my gut's always been a mess.

I will have the infected catheter yanked out tomarrow, or should I

say, in few hours, and once the infection is cleared, another one

placed. I am doing IV antibiotics right now every eight hours

through my port. I haven't had to do home IV's in 2 years, I forgot

what a pain they are...lol

As for the GI issues, I am looking into seeing another TX center

thats been around for awhile to see if they can do something about

my gallbladder and chronic pancreatitis. The place I'm looking at

has been doing TX for almost 2 decades now and it is one of the

largest CF transplant centers in the world. I have a friend that

lived here after her TX almost 10 yrs ago but was TX there and now

she moved back home so Id go stay with her.Plus, I can fly there

free of charge. I am just tired of the feeding tubes and whatnot. I

keep losing weight and they keep sticking me in the hospital for

tube feeds and TPN. I hate TPN ( you get all your fat and stuff

through a bag of fluid hooked up to an IV in your neck ) It's hard

on the liver and mine almost shut down once b/c of it.

It's just odd. They tell me know to double my salt intake, fat

intake, food and water, yada yada yada. I am abt the same size as

Brad and he's 3 inches shorter....hehehe.

KJeep in mind I was rather chubby pre-tx......

Hope to hear from yall.

Huggles,

Becki