Search results

Hi... I've done Home IVs many times and have had a couple of PICC lines. I've only had them clog in the hospital, most of the time because they claim that the type I get (automatic valve- it has a valve inside and doesn't need a clamp on the outside) doesn't need to be flushed with heparin, but...

I don't get leg cramps, but I do get that joint pain, especially in my knees and hips. I also get them mostly in the middle of the night, and it's very hard to go back asleep with my legs hurting like that. For me, it happens when my CF is flaring up and its time to go on some antibiotics. Just...

I am hoping along with you that Seth does not have CF. But if he does, the earlier he gets diagnosed, the better-- the sooner he gets treatment, the quicker he will begin to thrive, and the less lung damage will be done. It's very hard to predict how long a person w/ CF will live, or the...

Not to nitpick, and I'm not even sure if I'm correct, but I think CFer's pancreases (sp?) produce enzymes, but some people's are blocked by the thick mucus. I've always been told this-- but I'm not positive so don't quote me <img src="i/expressions/face-icon-small-smile.gif" border="0">Also...

There was a very intriguing article about this (people aborting babies after they ave genetic testing done) in the NY Times two sundays ago (father's day). Because in this age of genetic testing many people are getting abortions when they find out something's wrong with their baby, and the...

I know the feeling of needing to eat, but just not having a humongous appetite. Some tricks we were told over the years:Use heavy cream instead of regular milk in your cereal, or mix powdered milk into whole milk for extra caloriesCarnation Instant breakfast makes a pretty good shake- it doesn't...

I feel like we used to have a chart hanging up in one of our cabinets about how many enzymes to take with certain foods. Maybe ask your doctor or the clinic social worker. You could also try contacting the manucfacturer of your son's enzymes. Some foods I've always had trouble digesting and...

I take 3 Pancrease MT20s with meals, and weigh about 72-73 pounds.Julie-- you are partially correct, but weight does play a factor in enzyme dosages. When a person is very pancreatic insufficient, there is a maximum dosage of enzymes allowed based on the weight of the patient. I think the...

<blockquote>Quote<br><hr>Most people take life for granted thinking that there's always tomorrow. Not only is that not true for us...it's not true for ANYONE.<hr></blockquote>Exactly how I feel. No one knows what tomorrow will bring, so why put living as you want to off another second? I think...

Haha... I wish it was too much weight <img src="i/expressions/face-icon-small-smile.gif" border="0">... I've had trouble keeping on weight ever since that change. I'm sure the enzyme dosing was not the only factor, but it certainly appeared to coincide on the weight chart. I can't honestly say...

HiA person's enzyme dosage is determined by weight. When I was much younger, there used to be no guidelines to enzyme dosages; it was more how much the patient needed. But then due to colonic strictures caused by enzymes (I think thats what they were called), they started a sort of guideline for...

Hi,I've cultured pseudomonas for 10 years. Of course it's never a good thing to culture something new, but pseudomonas is no longer the beginning of the end, as it was in the past. I'm doing very well. If it does signal a helath decline, it is a VERY VERY slow one. When I cultured it, I almost...

Just putting in my two cents-- I'm no doctor!Maybe because it was such a low level of pseudomonas that was cultured, the doctors thought it would be best to put your daughter on one round of antibiotics, and see how the next culture went, not wanting to use antibiotics too eagerly. I've had...

Forgive me for my ignorance, but is the House of Commons part of the U.S. government? Or is it a part of another country's government?

I'm 15, but from the age of 10 on, I've had excruitiating joint pain, especially at night, on and off. It's most prevalent in my hips and knees. I asked my doctor, and they said it can have to do with CF, especially when the CF is flaring up, so to speak. It also can be a reaction to certain...

Dave means vas deferens, I think

<blockquote>Quote<br><hr>I keep reading and everyone says that life goes on but at this point I just don't see how it can, I suppose that you have all felt that way at some point and are still here to tell us newcomers that life does go on, so it is somewhat comforting to know that maybe there...

Along the lines of having a "secret" with Mommy, how about getting her a special toy she can only play with while your other two children are doing treatments? Just a thought.

To the anonymous person:Ok, I reread your post, and, in fact you did not say so and so should not have a child. But to me that was your implication, and if it wasn't forgive me. But the thing you don't seem to agree with/understand (and yes it is your opinion, and now here is mine) is that life...

to the anonymous person:Given your philosophy, apparentely no one should be able to bring a child into this world. A woman may be in perfect health when her baby is born, develop advanced cancer and die before the child is 5. Or, as cliched as this is, you could get hit by a bus. Should she have...