Search results

Thanks for the info - I have had many sleep studies done- & they found my CO2 is high a lot- (you can not mistake a CO2 headache- so I have one done & a blood gas when I start getting those headaches). So, if I sleep with it on I let off the CO2. I have also been on it in the ICU before too...

I don't hear much about bi-paps in here except when it comes to the "end". I have been on a bi-pap at night for like 10 months now. I was just wondering if I am just much sicker or if other people use one too?

I think its perfectly normal to feel this way when you are dealing with what we have to deal with. I think these feelings just come with the territory of a chronic illness. I have these feelings a lot too, it really does help to talk to someone if you think thats something you might want to do...

I have this problem, thats why I sleep with a bi-pap. The only way I can describe is like my head is going to explode & then really tired all day- its an intense pain and it goes down my neck. I would DEF. suggest having the doc check his blood gas if it continues. I had this a week ago & I went...

I know I have depression at times. I have been diagnosed with anxiety so Im on prozac for it ( & atarax as needed) at first I was embarassed by this, but I think it totally goes with the territory of what we have to deal with everyday. I think its very normal for people with chronic illnesses to...

the person who this is written about goes to the same clinic as I do, My doc has been telling me about the book for months and says its really good.

yea, my doc just told me its something they worry about- she wasn't saying I had it. I highly doubt I have it because I just had a normal heart test in April. I was just wondering what the symptoms were because Im in the transplant eval. so its something I worry about, but thats just me - when...

Is it common for people with CF to have heart problems too? Yesterday my doc asked me if my feet are ever swollen & then she mentioned conjestive heart failure- I have never noticed it, but I do notice that sometimes my ankles are sore and look a little puffy. I was looking up the symptoms of...

I know some of you have gone here for the transplant program- I had my first visit today & I am going to be starting the eval. soon- they told me it takes 3 months for the process...is that true? I thought it would be a lot shorter than that. I know there is a lot of testing to do. Just wondering...

yea I have heard that is true. I went to the transplant clinic today & I am clear of the cepicia, but also she did say they have done some transplants with cepicia because there are different types I guess- a "good" one and a "bad" one. I guess if its the "good" one they will do it. I was very...

I had this problem too and I took reglan for it as well. I think it worked, but the real problem for me was the g-tube was just making me sooo full & I would throw up all the time from it- I had to have a j-tube put in- what a world of difference. I have gained about 15 pounds since May when I...

I think my doc had told me the same thing- that the "bugs" can over take eachother. I am glad they are so cautious where I am going, but I so worried about if I have cepicia or not (because this is a transplant eval.)- My nurse told me my last 2 came back neg.- I am confused if I have it or...

well Im going to the transplant clinic to start the eval. & its one day for everyone I guess. I haven't cultured it in a long time, so I don't know why they are making be do this, but I will do it. I know its to protect everyone else, but my last 2 cultures were neg. for it.

Does anyone know if this can come and go? I am going to a new clinic on Wed. and they called me to tell me I have to wait in the hallway when I go there because I cultured it back in 2003, but I guess only once more since then and all the rest have come back neg. for it. Its really concerning me =(

My dad always used to call me amykins & he passed away so I like to remember him that way...

I feel and look great ( if I say so) I hate how skinny I am!! but since I have this extra weight I feel so good about myself. The way I did it is just by the tube feedings because I am not a big eatter- I have to force myself to eat more. When I first went I was way under the limit for my...

A J-tube bipasses the stomach all together, so you never have that full feeling. It goes into the jejunal, which is past the stomach. Did Brigham's say they want you to gain weight?They were really stressing that the 1st time I went (I was very under weight then) I ask a lot about this because...

well at first I had just a g-tube and I could NOT gain the weight because I couldn't keep it down, but since I have had the j-tube put it is has made a huge difference- I never vomit anymore. Also, like someone said you might want to have your sugars checked to make sure your absorbing it all- I...

I use nutren 2.0 - I do about 4-5 cans a night (1 can = 500 cals.)- depending on when I want to get out of bed- it really has helped (even though I hate the looks of the j-tube). Is your weight ok or is that an issue for you too?

I just could not gain the weight on my own, so I had a j-tube put in- since I had it put in (in May) I have gained like 13 pounds- right now I am 5'6'' -110 lbs., which I guess is ok for B&W because they told me I had to weight @ least 102. For the 6 minute walk test- I have a P/T come to my...