Search results

  1. K

    Are unvaccinated children a threat to PWCF?

    Immunity is carried within your blood and bone marrow. So, even if the lungs were from an unvaccinated person, your own blood will flow through the new lungs, carrying the protective antibodies / T-cells. On the other subject, that poor newborn has to rely on "herd immunity", i.e. rely on...
  2. K

    What song do you relate your CF fight to

    This song came out just as we had our second child. And I really started to worry about the future of my two boys, cos my Dad died quite young as well. It made me well up each time I heard it. Its called Don't you worry child by Swedish house mafia
  3. K

    Latest Vertex News: New data for F508del and G551D

    Luckily (!?), many of our CF mutations are so rare that it would be impossible to carry out a clinical trial because there wouldn't be enough patients with a specific genotype. So, I'm hoping in vitro data like this (for other mutations) will be sufficient to allow clinical use. I don't think...
  4. K

    Reactions to Ceftazidime

    Wow, I've started getting those exact same headaches from Colomycin as well. None of the normal pain killers touch it and you have to wait about 5 hours for the pain to wear off. I don't think my doctor has encountered this side effect before, so at least I know I'm not alone with this problem...
  5. K

    IVF success stories, please share need to hear some positive stories

    Hi Elaine, We've had two boys by IVF. My wife is non-carrier of CF and I have the typical CF infertility, congenital absence of the vas deferens thing. My wife did the 4 weeks tracking, 2 weeks sniffer stimulation, egg harvest protocol. I had sperm aspirated direct from the testes (epididymus)...
  6. K

    Hemoptysis

    Yeah, its pretty common to cough up blood. I coughed up blood for the first time age 16. I'm 38 now. Usually exercise causes it for me, but I've also had the sitting down - doing nothing thing and then bam, blood. you get used to it. normally, 2 weeks of IVs would clear it up for me. I also have...
  7. K

    How did your decline go?

    Pat, I really like your "No one gets outta here alive" quote. Good one. CrisDopher, what age were you when this decline happened? 50% down to 20% in 1 year is catastrophic.
  8. K

    How did your decline go?

    Essentially the statistics show if you have an FEV1 below 30%, you have a 50% chance of dying within 2-3 years. Or to put a positive spin on it, you have a 50% chance of still being alive at 2-3 years. Yay! I found the following info really helpful...
  9. K

    Exercising???

    Another thing to point out is limb and core strength are really important post transplant; actually being able to climb out of bed after the operation. So if you can't go for a 5 minute walk, perhaps lifting some arm weights or going down to squat position and back up again, or walking about the...
  10. K

    Starting the evaluation for transplant

    Excellent post baco623. Robbie, it might be worth mentioning, have you guys exhausted all of the antibiotics options available. Cos, if you can find some odd or unusual antibiotic that are not usually used, you might have an easier time over the next couple of years. Instead of fortum...
  11. K

    Very Low Fat Diet & CF

    Soya, sounds like you're not taking enough enzymes supplements. How many do you take with those heavy meals? For instance, I take 12 creon 25000 with a fat heavy meal...
  12. K

    Kalydeco + D579G

    Man, you must be going nuts, knowing this drug is available and could do wonders for you (especially having an FEV1 of 45%, your lungs are not too badly damaged). I've often found this, you go to clinic and say "why am I not on drug X or Y". Doc: Oh yeah, we better put you on that. I remember...
  13. K

    Question about F1052V and Drugs on the Pipeline

    V520F is consistently listed as class III in reviews. However, there is no published protein work so nobody can say for sure. I'm hoping it doesn't make it to the surface by itself, cos that V520F chloride conductance was pathetic...
  14. K

    Question about F1052V and Drugs on the Pipeline

    @Justinsmama: You could expect Kalydeco to certainly help your sons symptoms looking at that increase in chloride secretion. The only way to know for sure, is start taking kalydeco I guess. @amykay1965: These in vitro results only reflect kalydeco monotherapy. And we know from the phase II...
  15. K

    Is a full sequencing test enough to determine

    Full sequencing will pick up any deletion or insertion mutations. For example, DF508 is a deletion mutation. It will also pick up any larger intron/exon deletions or insertions (much more rare). To answer your final sentence: No, severity of symptoms does not determine the type of genetic test...
  16. K

    Question about F1052V and Drugs on the Pipeline

    F1052V is on the far right of the graph. As you can see, kalydeco (ivacaftor) has a large effect. With the mutation being so mild, it already generates near normal chloride secretion. (these results were generated in vitro, so not patient data - therefore might not work as well in patient etc.)
  17. K

    transplant and ssdi

    Wow, congrats mm70. I'm just starting down the transplant path and will be having my first "meet the chief transplant doctor" meeting. I would love to hear more about all the testing you underwent and what kind of lungs you got and the re-hab and everything... Like did you have really common...
  18. K

    Pushing Yourself To Far? Please Help!!

    I played soccer up until last year. My lung function has now dropped to 35% and if I push myself too much I get thumping headaches due to prolonged oxygen desaturation below 90%. So my physio advised me to give up the soccer and go walking instead. So I imagine, if you're doing exercise and not...
  19. K

    ivs

    This sounds very similar to what happened to me. I've taken tobramycin for years but now suddenly, my kidneys don't like it any more and it keeps making me feel nauseous. Turns out I had elevated levels in my blood that remained above the "acceptable trough level" of 1.0. So make sure its not...
  20. K

    F508Del and M470V

    There is a crucial difference between the terms "sequencing" and "screening". Screening is where you look for specific mutations. e.g. the typical 29 mutations. Where I have used the term sequencing, this actually means to sequence the entire gene, all 150,000 bases, which will detect ALL...
Top