For those of you that don't know me I'm Lauren. At 31 I have had a fufilling career and am now at home on SSDI. I have a 2.5 yr old son with cf who has still not shown any signs other than autogenic palmar wrinkling (think that's what it's called). We tested my dh for 89 mutations prior to conception and he was found not to be a carrier. I had a wonderful pregnancy with a very healthy 7 lb 10 oz baby boy. When ds was born we had him sequenced and they found a second mutation. I am a big proponent of sequencing children from cfers. We owe them preventative care!
This year has been a challenge but not also without blessings. After 5 intense rounds of IV antibiotics (previous to 2009 I had IV antibiotics 6 times in my life), I blew the best FEV1 I had since 2000 (other than when I was in V770 Ph. 2b). It seems that my hard work exercising and being compliant is finally paying off. I blew a 74% although now I seem to be back at my baseline of 67%.
The frequent abx use has not come without some serious, drug resistance though. I now culture a MRSA that is resistant to all orals except intermittantly sensitive to doxycycline. I also have 3 PAs, two of which only have one antiobiotic that works against them. This is conerning to my dr and I enough so that we will have to be careful of when and what abx we use.
I went to a hearing test with an audiologist after reading that article about how it's not so much high doses that cause ototoxicity anymore but frequency of use of aminoglycerids. I also got Isaac tested since I took Tobi while he was in utero. I am pleased to tell you that we both have stellar hearing. Absolutely no signs of hearing loss!! Yeah!
I got a port so I don't have to go in at all when it's time for IVs. Best decision.
I went for screening for V770 Ph. 3 and I found out yesterday that I am in! As long as I don't get sick between now and then (must enter Day 1 at baseline) I will start the trial on/around 11/16. Please pray I get drug. Although I am resigned to be okay with it if I get placebo because in a year through open label extension I will get drug. Also I will be helping Isaac (who also has G551D) and many other cfers.
I will not be able to discuss details of the study but I wanted to share with you all that I did make it in. I do not look forward to going to the hospital for the visits (1 hr. drive and 3 hr. train ride each way!) due to infection fear but they treat me so well and protect me the best they can. I'm feeling very optimistic about my future...and especially little Isaac's.
Stay healthy!
This year has been a challenge but not also without blessings. After 5 intense rounds of IV antibiotics (previous to 2009 I had IV antibiotics 6 times in my life), I blew the best FEV1 I had since 2000 (other than when I was in V770 Ph. 2b). It seems that my hard work exercising and being compliant is finally paying off. I blew a 74% although now I seem to be back at my baseline of 67%.
The frequent abx use has not come without some serious, drug resistance though. I now culture a MRSA that is resistant to all orals except intermittantly sensitive to doxycycline. I also have 3 PAs, two of which only have one antiobiotic that works against them. This is conerning to my dr and I enough so that we will have to be careful of when and what abx we use.
I went to a hearing test with an audiologist after reading that article about how it's not so much high doses that cause ototoxicity anymore but frequency of use of aminoglycerids. I also got Isaac tested since I took Tobi while he was in utero. I am pleased to tell you that we both have stellar hearing. Absolutely no signs of hearing loss!! Yeah!
I got a port so I don't have to go in at all when it's time for IVs. Best decision.
I went for screening for V770 Ph. 3 and I found out yesterday that I am in! As long as I don't get sick between now and then (must enter Day 1 at baseline) I will start the trial on/around 11/16. Please pray I get drug. Although I am resigned to be okay with it if I get placebo because in a year through open label extension I will get drug. Also I will be helping Isaac (who also has G551D) and many other cfers.
I will not be able to discuss details of the study but I wanted to share with you all that I did make it in. I do not look forward to going to the hospital for the visits (1 hr. drive and 3 hr. train ride each way!) due to infection fear but they treat me so well and protect me the best they can. I'm feeling very optimistic about my future...and especially little Isaac's.
Stay healthy!