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I am currently waiting for lung tx at UPMC in Pittsburgh PA. I've had to relocate and have been waiting for about 3 1/2 weeks so far. I know that they take very high risk patients, they are one of the top 5 tx centers in the country and did 90 lung transplants in 2005 which is a huge amount! The...

I'm so glad you started this topic!! I have trying to find an email for Dr. Stern, but haven't found one that works. I thought maybe he had retired. I started seeing him when I was 8 or so and did so until I was in my 20's. Even when I moved to VA, we traveled 7-8 hours to see him every 3...

I do that!! I hate the pulse oximeter! It's my enemy! Ha Ha! Especially when they started talking about me going on O2, that's all I did, take huge breaths right before they put it on my finger. If that's cheating, oh well. Doesn't help anyway once I get up and start walking around!

Thanks for the advice!!

I noticed that Joanne mentioned that she still uses the Vest post transplant. Is this something that alot of you post tx people do? I have a Vest now and my insurance has never paid for it. I was thinking of giving it back to HillRom after my tx since I've had it for free for all these years and...

I get that pretty often too, usually when I'm sick. My doc said it was pleurisy, which is inflammation of the pleural lining of your lungs (the lining around your lungs). He said it usually happens more often when there is an infection present. Mine can be really severe or not too bad and the...

I have used the vest for years and it works so much better than anything else for me. I used to do manual CPT, but no matter how hard I was clapped, it never seemed to loosen up the mucus much. I've also tried the Flutter, Acapella and Percussors without any luck. The Vest does shake you around...

I know what you're going through!! My FEV1 is about 23% right now and I can't do squat!! I just sit around all day hooked up to my O2 and do NOTHING! I absolutely hate it. Showering and getting dressed is the hardest part of the day. Hardly have sex anymore which sucks! I would do anything to be...

When my doctor said I was ready for a transplant, they looked at alot of things which includes all the stuff in the previous posts. But the one major thing they asked me was how was my quality of life. If your chained to an o2 tank 24/7, can't climb stairs, can't take walks and your life just...

They are so great!! They gave me mine too, my insurance never paid for it. At first I had the huge one, then when the smaller one came out, they traded me. It finally gave out after many, many years of use and they sent me a new one - overnight of course! And my ins. has never paid for any of...

Hi Janet, sounds to me like your husbands going a little overboard! Most CFers become resistant to many antibiotics, so I don't think that is uncommon. Also, dogs aren't harmful to people with CF. I grew up with dogs and cats. I worked at numerous vets for years and handled every kind of pet you...

Hi, I'm Martha, Jesse's wife, and I'm getting a transplant in the next couple of months at UPMC. The pics helped alot! I saw them and thought - that's not so bad, I can deal with that! But it took me a LONG time to get here. I was terrified of getting a transplant and my worst fear was pain...

Same thing with me....no one in my family had even heard of CF before I was diagnosed. I have 1 sister and 1 brother, perfectly healthy. I'm the baby too, so it was quite a shock to my parents. My dad actually started working on our family tree and found that a number of children died at very...

I had salamanders when I was a kid. I also worked in a vet for years and handled snakes, turtles, iguanas, monitors, etc. and never had any problems. The biggest thing is to make sure your son washes his hands EVERY time he handles the reptile. Reptiles and amphibians often have salmonella and...

I take Ultrase MT20, 2 caps for meals and 1 for snacks. I have always taken more - started out with 4 for meals for years, went to 3 for meals for last 5 years and just went to 2. Was having trouble with constipation so I adjusted. Has anyone else had to cut down on their enzymes? Don't know why...

Okay, here's me. First one of me and my husband, obviously! Second one, me fishing (don't worry - I threw it back!!). Martha CF, 30

Hi, I'm sorry to hear that you're having to deal with this difficult decision. I myself am going through some hard "transplant" times. I was listed on a transplant list in 1996. At the time I was not all that sick, getting cleanouts once a year, my FEV1 not too bad, maybe around 40%. My CF...

My teeth are stained from taking Tetracycline when I was little. I've talked with my dentist and he said the over the counter whitening products won't do a whole lot because the teeth are stained all the way through. He said professional whitening by a dentist for a prolonged time MIGHT make a...

I was just told that I have Diabetes. The thing I'm most worried about is not being able to eat what I want. The doctor I saw said that I wouldn't have to worry, I could pretty much eat whatever because of the CF and the weight thing and they would tailor the insuling/pills to what I eat. I went...

Hi y'all, I've been there. For about 10 years I got IV's and Picc Lines until there were literally NO veins left to access. I got my first port in my chest in '95 and it was the greatest thing ever! Of course I was scared to death to get it, but it made hospitalizations SOOO much easier. It...