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My parents do help when I am sick or in the hospital either by driving me there or to appointments that are far away, or by coming over and helping with housework and cooking if I happen to be on home IV's...that first week is usually the hardest on me, any help is welcomed then. Every little...

My parents do help when I am sick or in the hospital either by driving me there or to appointments that are far away, or by coming over and helping with housework and cooking if I happen to be on home IV's...that first week is usually the hardest on me, any help is welcomed then. Every little...

I have been posting alot and im sorry if i sometimes dont make sense..i do this on my iphone :) ..i had rapid response called in my room last night Scary when that happens....every time I am sick, my heart does that as well, but I also have a twitchy heart as they say, SVT or supraventricular...

I have been posting alot and im sorry if i sometimes dont make sense..i do this on my iphone :) ..i had rapid response called in my room last night Scary when that happens....every time I am sick, my heart does that as well, but I also have a twitchy heart as they say, SVT or supraventricular...

I would ask for genetic testing, comprehensive that tests for the over 1600 mutations of CF. Sweat tests are good if they come out strongly positive, then there is no doubt...but if it falls into the borderline category, then things start to get a little fuzzy. Go to an accredited CF center (if...

I would ask for genetic testing, comprehensive that tests for the over 1600 mutations of CF. Sweat tests are good if they come out strongly positive, then there is no doubt...but if it falls into the borderline category, then things start to get a little fuzzy. Go to an accredited CF center (if...

I too was approved first time, but had other severe problems as well, I was on O2 full time, BiPAP as well. My PFT's weren't great, so I am sure all of this contributed to approval. Yes, many people are denied the first time around, forgot the percentages, but it isn't impossible. Most people do...

I too was approved first time, but had other severe problems as well, I was on O2 full time, BiPAP as well. My PFT's weren't great, so I am sure all of this contributed to approval. Yes, many people are denied the first time around, forgot the percentages, but it isn't impossible. Most people do...

8 yo with pancreatic insufficiency, fighting for genetic sequencing ??? Odd that a doctor would say that even if 2 mutations are found no CF, yes most CF mutations are rare, some very rare....glad you are going for a second opinion! There are people on this board who are diagnosed with CF even...

I access my port, have done so since my first needle change years ago....I was a RN, so I was comfortable doing this, it is also important that I maintain the ability to do it myself. I don't have to rely on a home health nurse to come out and access it, when the doc gives the go ahead to do...

I access my port, have done so since my first needle change years ago....I was a RN, so I was comfortable doing this, it is also important that I maintain the ability to do it myself. I don't have to rely on a home health nurse to come out and access it, when the doc gives the go ahead to do...

My doc gets a 4, they are pretty good.....the whole pulmo team knows me and I am very comfortable with their care if he isn't there.. BTW, I don't go to a CF accredited center, still a university hospital with a physician who specializes in bronchiectasis (and has a few CF'ers under his care). I...

My doc gets a 4, they are pretty good.....the whole pulmo team knows me and I am very comfortable with their care if he isn't there.. BTW, I don't go to a CF accredited center, still a university hospital with a physician who specializes in bronchiectasis (and has a few CF'ers under his care). I...

I have heard of very late diagnoses especially now that sequencing has come so far (there are 1600 known mutations thus far and counting). Like I said in my original post to you, it was a HUGE red flag for my very smart primary doc to look into CF. They even recultered me just to make sure that...

I have heard of very late diagnoses especially now that sequencing has come so far (there are 1600 known mutations thus far and counting). Like I said in my original post to you, it was a HUGE red flag for my very smart primary doc to look into CF. They even recultered me just to make sure that...

That is awesome news, I have no doubt he will recover quickly! He has such resolve. Continuing to pray for him that everything goes well Jenn 40 wCF

That is awesome news, I have no doubt he will recover quickly! He has such resolve. Continuing to pray for him that everything goes well Jenn 40 wCF

Never had a lung collapse, have had a chest tube (from VATS procedure) and they hurt, I hope you feel better soon in that regards! I also just wanted to let you know I will be thinking of you as you get your evaluation for transplant. I can't imagine how frightened you must be! Hang in there...

Never had a lung collapse, have had a chest tube (from VATS procedure) and they hurt, I hope you feel better soon in that regards! I also just wanted to let you know I will be thinking of you as you get your evaluation for transplant. I can't imagine how frightened you must be! Hang in there...

Wow, I know this is off topic, but has your husband's father had issues with his sinuses all of his life? I ask because it isn't common to grow out cepacia, when I grew that out, my primary doctor went looking for causes and started testing me for CF....I was dx at 33. He is at least a...