Recent content by vivsmom

Jess, I will follow your blog. I am going through transplant evaluation in Boston. I hope to be listed soon! vivsmom 56, diagnosed at 55 with CF

I was diagnosed last year at age 55. I had lung issues all my life and was diagnosed with Bronchiectasis when I was about 22. I am pancreatic sufficient so my pulmonary doc never thought to have me tested. It was only until last year after a few years of "going downhill" and being...

I was diagnosed last year at age 55. I had lung issues all my life and was diagnosed with Bronchiectasis when I was about 22. I am pancreatic sufficient so my pulmonary doc never thought to have me tested. It was only until last year after a few years of "going downhill" and being...

Barb, It sounds like you have already had testing if they know you have the D508 gene. There are many programs that help with medications. Start with the CF Foundation website, if you haven't already. And if you have a CF Care Center in your area, they would be able to help you find funds. My...

Barb, It sounds like you have already had testing if they know you have the D508 gene. There are many programs that help with medications. Start with the CF Foundation website, if you haven't already. And if you have a CF Care Center in your area, they would be able to help you find funds. My...

replying to: Hello to all, may I ask whether you are all carriers? Because as far as I am aware sufferers of CF need medication and enzymes, and they are diagnosed early in life. Please let me know, since we have a big debate over here, on whether a sufferer can be diagnosed so late as at...

replying to: Hello to all, may I ask whether you are all carriers? Because as far as I am aware sufferers of CF need medication and enzymes, and they are diagnosed early in life. Please let me know, since we have a big debate over here, on whether a sufferer can be diagnosed so late as at...

Gunelle, My story is very similar to yours. I was diagnosed with Bronchiectasis when I was about 21. I am now 56. After all these years of dealing with the same issues you are dealing with, my diagnosis of CF didn't happen until last year when I finally "had enough" and was hospitalized. My...

Gunelle, My story is very similar to yours. I was diagnosed with Bronchiectasis when I was about 21. I am now 56. After all these years of dealing with the same issues you are dealing with, my diagnosis of CF didn't happen until last year when I finally "had enough" and was hospitalized. My...

I have seen a few of us "older CF'ers" lately. Just curious to see how many are over 50? And when you were diagnosed? Karen (vivsmom) 56 - today is my birthday! diagnosed at 55, CF D508 and A347

I have seen a few of us "older CF'ers" lately. Just curious to see how many are over 50? And when you were diagnosed? Karen (vivsmom) 56 - today is my birthday! diagnosed at 55, CF D508 and A347

mamaScarlett, I also do a month on and off Cayston and I travel quite a bit. I bring with me a small ziplok container (just the right size to put the neb in it when taken apart) along with that I have a travel size bottle with dish soap. So, after I finish the treatment, I rinse the neb, wash...

mamaScarlett, I also do a month on and off Cayston and I travel quite a bit. I bring with me a small ziplok container (just the right size to put the neb in it when taken apart) along with that I have a travel size bottle with dish soap. So, after I finish the treatment, I rinse the neb, wash...

My CF team recommended that I get a handicap pass as well as my husband. I finally gave in. I use it when I cannot find a close parking space during bad weather or I am not feeling well. I don't abuse it and usually park in the regular spaces to get the exercise. I haven't gotten nasty...

My CF team recommended that I get a handicap pass as well as my husband. I finally gave in. I use it when I cannot find a close parking space during bad weather or I am not feeling well. I don't abuse it and usually park in the regular spaces to get the exercise. I haven't gotten nasty...