Recent content by donin

I was able to negotiate my son carrying his own enzymes starting in kindergarten. But, he is 26 so it was before the panicked, over-protective, zero-tolerance era. Once in middle school a teacher found them and was exercised because he thought he had a red-hot felony on his hands - but it was...

Jabug8 - it sounds like you need a genetic test and a new pulmonologist and maybe a new pediatrician. I am sorry that you are having to confront this and especially sorry that it is being bungled. I hope she doesn't have CF.

TreasureGoddess and Kristan - I'm going to Google it right now. My son and I have been on the road for transplant evaluations. Lugging the Hill Rom vest feels like one of the toughest parts. It's heavy and awkward and feels like the last straw in this difficult endeavor. On an unrelated note -...

shay - the Aqua Guards are a miracle! They are much more secure than saran and tape and much easier to use.

Phutton - the m.abscessus is a beast - I hope you can beat it back hard. I don't know what a Hickman is. My son has a port. For years and years showering when the port of was accessed was an ordeal requiring saran wrap and medical tape. Last time he was in the hospital they whipped out this...

I think a lot depends on your mutations. There are some mutations that are so mild it's difficult to really understand why they are categorized as the same disease as someone who is homozygous for deltaF508.

Hi - sorry to hear about your weight issues. People in the non-CF world cannot understand the challenge. When my son was a child I relied on Scandi-shake and Ensure Plus (interestingly, he vastly prefers the Walmart store brand and he will not drink Boost). He drinks 6 per day. He has been...

Hi - my son has had m. abscessus for 8 years. He has gone on/off intensive (IV) treatment and has had a steady decline in health and functioning and quality of life. He has had some negative smears and even some negative cultures. We are hoping that 6 months of negative smears will be enough for...

Chrissie - my son has had NTM for 8 years. Night sweats are the warning sign that he is developing an active infection. Generally when he has been on the meds and it's under better control the sweats stop. Terrible chills in advance of fever are also an indication that it's coming at him hard...

Randford - you are so right! My son turned 26 in September. I worried endlessly over the past 6 years thinking, "If he's going to be disabled at 27 it would be better to just happen at 25 so that he can remain a disabled dependent on my insurance." He had been working full time since graduating...

beliveingjesus - thank you for your kind and supportive words. We are at Duke now going through the evaluation (again). Pitt is next on our list.

After being rejected by Mass General (MGH) my son (26 homozygous for DF508 and colonized with NTM that is not sensitive to macrolides) we are now at Duke hoping they will accept him. Duke seems much more aggressive than MGH. If they list him (please, please, please...) we will have to relocate...

Thank you both, very much, for replying. I do think that Duke and Pittsburgh are better options than Boston in that they have the biggest and most innovative programs and are the most willing to take risks. Boston felt manageable because it's just 90 minutes from home and we have dear friends...

SLHogan - I am so sad for this young man. I am sure you are also concerned about your daughter. It sounds like she is attempting to take on a very big responsibility that she may or may not be able to shoulder. What you're dealing with here is very grave. I am sorry. I am impressed by you and...

Rickengelage - I am shocked that you were not hospitalized and put on a course of IV antibiotics! That is a dramatic drop and would typically indicate an active infection. My son is 26 and I have seen him bounce back with excellent medication compliance and exercise.