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Ooops, I did it again.
Yesterday I got home from another 5 day stay in the hospital in Phoenix.
Once again, I was diagnosed with a blood infection. I don't know what is causing this, but we REALLY need to get this figured out & fixed.
I'm sick of feeling like I've been kicked around like a...
Wow, that's rough.
You know, your situation & mine are almost identical. I was put in a medically-induced coma for 3 weeks after my left lung blew a big hole in itself.
I was listed at the time. Everybody thought I would be de-listed because I was so sick.
The rules of allocation were changed...
Yesterday, the nurse from my CF Pulmonoligist called.
She gave me the results of my genetic testing.
It seems my mutations are DF508-CFTR.
I've never heard of CFTR before. Apparently it is a faily uncommon gene. Lucky me!
People with the CFTR gene have excessive pancreatic deficiency.
Boy...
I have a tattoo on my right forearm.
Actually, it helps insert an IV in my case.
There is a certain feature on the tattoo the nurse can aim for & she/he will stick it just about every time!
I have not used the vein too much yet. So it is still a valued little 'Aimpoint' that I don't want to...
CF treatments are just plain a pain in the ass.
What is a real drag is going through a transplant & then STILL having to do Tobi & Coliston!
I thought I ditched that crap 'cause I underwent a transplant.
Oh well, I guess it could always be worse.
And, yes, humour is VERY important! If you...
I was tested about 3 months ago to find out which mutation I have. Not sure if I have the vas deferens but I know I have been unable to 'make a kid'. And it aint from a lack of trying, I can tell you that!
As soon as I find out which mutation I have, I'll let you know.
I'm too old to start a...
You only have one body.
Even though I hate mine, I still try to take care of it. Many times, I fail miserably. Evidentally, I must have done something right, I'm almost 49 & still alive.
I was lucky I guess. Other than violent stomach problems all my life, CF didn't really manifest itself in...
I always take mine just before I start eating. And, in my case anyway, you can take too many or not enough. I've always had horrible stomach pain if I over or under dose. I've always had stomach 'issues' regardless; another one of the litle 'benefits' of having CF. It really sucks when you have...
I would not take any enzymes for a liquid, even if it is a shake. That's just me. I'm sure everyone is differnet though. I would suggest trying without first, & if you have unsatisfactory results, try it with a '10'. I'm on Pancreaze MT-16 & Pancreaze MT-10.
Wow, I had no idea there were any obese CF patients out there.
I've always had major issues keeping weight on. I got up to 139 lbs. last January. I got sick, lost 30 lbs. in about a week & haven't put it back on since. I have never met- or even seen an obese CFer when I go to any of my doctors.
I had a transplant. Post-trans we were told no raw vegetables that are grown in the ground. For instance, onions & potatoes.
I was also told no grapefruit & no sushi. The reason for the restriction on raw vegetables is the risk of infection. There are many organisms in the ground that get on...
While my dog isn't an official 'Therapy Dog', she most assuredly therapeutic to me!
She's part of the reason I'm still around.
She was just a pup when I really started going downhill. She had so much personality I kept telling myself, 'I can't die now, I gotta see how this pup turns out!'
She...
First: If he's bringing up blood and is in pain (you didn't say he was, but usually when I was like that, I was) & can't breath neither lying down nor sitting up he should probably go to the ER.
Second: does he work? If so, is he in a lower income bracket? Usually, the state has some sort of...
I never quit!
As I went downhill, my truck sat parked for longer & longer durations. I'm one of the lucky few whose employer thought the world of them, & could afford to let my truck sit until I was able to come back. Eventually, the lentghs of time between sicknesses was so short that I was...
Congratulations! I'm glad all went well for you. I wish you a long, happy post-trans life. My only advice, make sure you take all your meds at the appropriate time.
DO NOT MISS ANY DOSES OF YOUR ANTI-REJECTION MEDS!
I've been told that just about every case of rejection is because the person...
I never told any employer unless it was absolutely necessary.
In fact, the only employer that I cam right out & told was the last in my career.
Of course, I could never have passed the required physical if I had admitted I had CF.
Fortunately, the last employer I worked for thought the world...
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