JustaCFMom
Hey I wanted to ask you have you considered with your two sweat test, to ask your Dr to do the Map Genetic test. That is a full test, and funded so it does not cost. That was a loop hole I have ran into though from the center I was going to at UCDavis , as you need to be on the registry first. If you are, you can get the mapping done. Just pay attention to your symptom's. I have read, even with the older adults there is no such thing as a mild form of CF. The CF Jewish Center seems to be a wonderful center and well informed. I wish I could get in there. Also The link I posted on here, on the history of Cf I found very interesting. I have wondered about CF for quite sometime and of course with being older and now having many system organ problems really make me wonder. The history of CF refers to many issues that it should be considered of a multi organ problem. It is just so important to have a proper diagnose so you can get proper treatment and stay on top of your health.
When I had gone downhill in 2010, it was no doubt my stomach problems took a toll on me and played havoc on my body. It was like something attacked me not sure why I did not die. At 80 lbs and this is when I had to really fight for test for all auto immune and found out I had Hashimotos, (did not even fit this at all) you would have expected Hyper? I was in a mess. Dehydrated, in and out of hospital, low low Vit D. I really think I was in a thyroid storm. Ended up with a pace maker, the Gastro surgery and was very sick. My bile duc's were so bad and had malnusorption disorder and just could not keep anything down. I was wasting away. My Doctors kept giving me more and more thyroid meds and the count would keep going up? The opposite of what you would expect. (Really I had nurses and others telling me, if they would have addressed my Stomach issues, none of this would have happened. ) I was latterly like a ginni pig. Giving me meds might have been a misdiagnose, and caused all of this. (I was dealing with Drs who knew nothing of thyroid issues messing around with this for over a yr) Finally I got out of here at that point and got the Hashimotos diagnose. Since then, now BP is out of control, high and low, High and low blood sugar, possible sjhgrons? (Diagnosed by one Dr, but not the proper test every done) I am having major bladder problems, Heart palpations, rare PVC's, all kinds of stuff. Still fighting a sinus infection but this is the norm for me. I am hoping when I get to Stanford they do the whole work up. (the nurse said they do) I have had these major sinuses issues for so long and never seem to be addressed. I recall back in my early 30's I was told eventually I would need sinus surgery. It is hard when you have suffered for so long and just learn to live with it. No doctor where I live has even cared enough to send me to a ENT. It has been fourteen yrs of pure He..............! I have had two sleep study's which suggest, Sinus issues and need follow up. I also do not go into the proper sleeps to get a good night sleep It has been one thing after a other. So more then anything I need a diagnose of what I have, hopefully to get the proper treatment.
Really wonder at my age and the digestive problems I have had, if it is CF and not being treated properly has set my whole body out of wack and affected so much.
Hugs mom you hang in there.
