Just a little update after all the help I've received here. I'm now being seen regularly at my local cf clinic. They have me seeing a G.I. Doc as they believe my current stomach issues could possibly be chronic pancreatitis related to the cf and I am waiting for further tests. I have also been started on insulin as they believe that my diabetes is CFRD which explains a lot. Still waiting on some tests but feel I am finally getting some answers to all the strange little things that seemed unrelated, like why my liver enzymes were always off. It's just funny that my family doctor used to say everything was "just stress" now he says " it's probably your cf" ( I don't go to him often) lol. Thanks again everyone.
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Just an update
- Thread starter meech
- Start date
TreasureGoddess
Member
Good! Thanks for the update, it's always great to see that people are getting answers and this forum has helped me so much in the past, SO GLAD it has helped you too. Make sure to keep asking questions until you get the results you want. I think a GI doc is absolutely important as is the CF team. My son hardly ever sees his "regular" doctor, almost everything is affected by CF or the CF affects things in your body, so dealing with people that have seen this more often is a good plan.
Aboveallislove
Super Moderator
Thanks so much for the update!!! Also, FYI: Your mutations will likely qualify you for the 661 + Kalydeco study. The combo should do wonders for you, so you should really keep an eye out for when they start recruiting so you can get on those drugs soon (sounds like Canada doesn't have R117 access yet, like US).
Aboveallislove
Super Moderator
Yeah, I didn't think you guys had access... :-( which is why I suggested the trial because you'd likely get the real drugs after the six months for several years for free and you'd be getting both 661 and kalydeco. I'll try to post once the study starts for r117.
Thanks. I'm not sure how trials work but I'm not sure if with my other health issues if they would accept me. I was just at my immunologist yesterday and there is talk of looking into me getting a port for my C1 inhibitor infusions because I may need them biweekly to prevent my angioedema. I've had training to find vein access for infusions but told him I don't think I could handle doing it that often (right now it is only when I swell) I would definitely be interested in the trial.