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Come on, who could possibly believe that the government doesn't allow diseases to be cured? 1 - Even if that were true here in the US, you couldn't stop the rest of the world from trying to find a cure for cancer, CF, Parkinson's, AIDS, etc... 2 - Hello, penicillian (antibiotics) cured many...

This is a tough one. Your beliefs are yours and no one can say if they are right or wrong. Just know that if you decide to marry without the benefit of recognition from the state if could lead to complications later - say if you or your husband were to die or become incapacitated in any way...

This is a very personal choice and I'm sure you'll get opinions from all sides. Being that you already have a CFer, I'd at least get the test done to determine if the baby has it. If nothing else, you can prepare. As far as keeping the baby, there are arguments on both sides but in the end it...

No, you're not but the media doesn't "advertise" that here. I have many friends in the UK and through Europe and in general, I don't think most Americans would be too happy with the quality of care received there. One of my friends who was in a major accident and required over 350 sutures in...

When our CFer was first diagnosed (at 11wks) and after he finally got out of the hospital, we were going about once a month until he was about a year old. Since then, we've been going about every three months. If we're involved in any studies, then it depends on the protocol for that...

Yep, CF sucks and there's no way around that. Sure there are folks that lead relatively normal lives but there are also 10 years olds dying from Cepacia. Explain that! You can't no matter what religion you subscribe to. It's just the roll of the dice. I'm past trying to understand it. I...

Pseudomonas is just one of the bacteria that CFers can grow. It tends to be a bit more serious than staph in the way that it colonizes. Some Dr's believe that once you have Pseudomonas you always have it. My son has cultured for it occasionally but not all the time. We've only been on TOBI...

Julie, tell me (us) more about CF food expenses being tax deductible.

I'm sure you're all aware of the proposed budget cuts to CSHC, including funding to the adult CF program. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Attached is an e-mail I recieved with some positive news but there is still plenty of work to do. So, if you live in Michigan...

RE: baby book? Getting a copy of your medical records is a great idea. It never even dawned on me to do that. We're usually very organized when it comes to our CFers info, getting a copy of his medical record would make things a lot easier. How should I go about getting a copy? Is it as...

Kudos to Costco. I'll check and see if my Rx coverage will allow me to refil Rx's there. Of course, you'd think why wouldn't they allow me to use Costco but they won't let me use the CF pharmacy so who knows. Go figure! BTW... You can check the story out. Here's the link (the story is near...

RE: baby book? We don't have a special section in our baby book for CF but CF is definitely part of the baby book. We included how things were different before the diagnosis (at 11 weeks), the process of getting diagnosed, dates, how we felt about the diagnosis, etc. We have tons of pictures...

I'm really surprised to hear that about a CF center! We too are on the same floor with the other CFers. They allow us to bring in our own enzymes so we have them at meals and don't have to wait around on them. They always stick to our med schedule. There's a brief interview process when...

Wow! What a great site - lots of info, very compreshensive. Good job Julie!<img src="i/expressions/face-icon-small-smile.gif" border="0">

It always amazes me how insensitive (or stupid) people can be when discussing CF with me. I just try to believe that they are trying to be comforting in some way and the words are just coming out wrong. We have lots of family that hasn't bothered to tell their Dr's about CF in the family...

Is the hospital you're at a CF center? That can make a big difference. If they aren't then you need to advocate for you child and if that means stepping on some toes or offending someone then so be it. If they are a center then the level of care should be appropriate. If it's not then you...

I used to get concerned that my CFer was pooping more than once a day and thought for sure this meant he needed his enzymes adjusted. Conventional wisdom suggests that pooping once a day is normal for healthy people. I've done some digging on this issue and it seems that pooping only once a...

Life is worth more than dollars and cents whether you have CF or not. By dollars and cents my life is only worth $1M (life ins). Not much really when you consider I have two children (1 with CF), a husband, parents, siblings, friends, etc. I'd hope they'd argue that I'm worth more than the...

Missing school is just one of the things CFers have to deal with. One year you may miss a lot of school and another not much. You should ask your school's principal about setting up a 504 plan for addressing this and other issues surrounding CF. You social worker should be able to help you...

I'm pretty sure they can restrict admission based on a child not being potty trained. This is pretty common even outside the CF world. You mentioned that the daycares were both state registered but I assume they are not state run and are private? Either way, I don't think they can deny...