Results not what I was hoping for
- Thread starter meech
- Start date
Hey Meech, thanks for the update, but i'm sorry to hear it's not what you we were hoping. There is a silver lining though. If you end up being definitively diagnosed they will get you started on all of the CF treatments and you will start to feel better! I've heard of people who's health improved a TON after being diagnosed as an adult because they are finally receiving the proper treatment.
That being said, I can't imagine what you are going through right now. I'm sure it's beyond hard to wrap your head around. And although the treatments will help you, I'm sure it will be a daunting task getting started on everything. It will be worth it though.
Keep us posted and keep on keepin' on!
Autumn 33 w/CF
That being said, I can't imagine what you are going through right now. I'm sure it's beyond hard to wrap your head around. And although the treatments will help you, I'm sure it will be a daunting task getting started on everything. It will be worth it though.
Keep us posted and keep on keepin' on!
Autumn 33 w/CF
hi meech, your going to be okay just need to make changes in your lifestyle: good diet, no drugs, alcohol, or smoking, start exercise program, and take all the medicine and do all the treatments your doctors tell you. Get help from therapists or community forums. The family and friends are not going to fully understand what your going through so be patient with them. When I was diagnosed at 37 it was hard for me to comprehend what was going on but i felt better talking with my social worker and psychologist. Also, these forum communities are a big help.
Zack 41 w/CF
Zack 41 w/CF
Thank you both, I do believe if the genetics come back with mutations I must have a mild form. On the phone the doctor mentioned I may be a carrier with a high sweat test? In all the reading I have done I have not come across that. Is that even possible? I'm not even sure if/what treatment they will suggest if any. It sounds like everything right now is just on hold until the results come in. Luckily I have a very supportive family.
azdesertrat
New member
That's gotta be rough, being diagnosed n your 30's or 40's.
In some perverse way, I was lucky, I've known I have CF all my life because I was diagnosed at birth.
Best of luck to you Meech.
If there is any way I can help, just get in touch with me. You're now in my thoughts & prayers.
In some perverse way, I was lucky, I've known I have CF all my life because I was diagnosed at birth.
Best of luck to you Meech.
If there is any way I can help, just get in touch with me. You're now in my thoughts & prayers.
W
welshwitch
Guest
Sorry to hear. And thanks for keeping us posted. I was wondering how your diagnosis was going. If it's any consolation -- lots of people are diagnosed on this site in their 40's, 50's, 60's and beyond -- more proof that CF is a huge spectrum of a disease. Let us know what happens with the genetic test.
Aboveallislove
Super Moderator
So sorry that the results were as they were. I'm concerned though that the doctor isn't immediately treating you for cf. the doctors say sweat test is the gold standard no matter the mutations and over 60 is diagnostic of cf is my understanding. http://www.cff.org/aboutcf/testing/sweattest/
Especially in light of your previous diagnosis which seems accurate. Also did they do a full gene sequence? I thought those usually take several months for results so maybe they aren't? Obviously you have to address the most urgent health concerns, but it seems prudent to be treating for cf now. The good news is that you likely do have mild mutations and thus will benefit from kalydeco. They should have your cultures and lung X-ray results by now...how'd those turn out. Did he do a fecal elasticity test too? Good luck and I am so sorry for this added worry.
Especially in light of your previous diagnosis which seems accurate. Also did they do a full gene sequence? I thought those usually take several months for results so maybe they aren't? Obviously you have to address the most urgent health concerns, but it seems prudent to be treating for cf now. The good news is that you likely do have mild mutations and thus will benefit from kalydeco. They should have your cultures and lung X-ray results by now...how'd those turn out. Did he do a fecal elasticity test too? Good luck and I am so sorry for this added worry.
I only talked to the doctor on the phone about the results so far, he said I could be a carrier with a high sweat test. I haven't heard of that. The genetics were sent to sick kids hospital in Toronto Canada. From what I could find this is all the testing they do here in Canada
http://www.sickkids.ca/pdfs/Paediatric Laboratory Medicine/info-sheets/56255-CF_OMG1620P_02.pdf
They didn't do any cultures. He said my sinus ct showed chronic sinus disease. My chest ct that I may have pneumonia. No fecal tests. I don't think they really expected the sweat test to come back high to be honest. I went to the appointment with my old paper work and I think that is why reordered all the tests....but I was told to just call his office and someone would give me the results over the phone. Now they are saying they will call me as soon as the genetic results are in. I don't know, maybe I am just a carrier. Thanks.
http://www.sickkids.ca/pdfs/Paediatric Laboratory Medicine/info-sheets/56255-CF_OMG1620P_02.pdf
They didn't do any cultures. He said my sinus ct showed chronic sinus disease. My chest ct that I may have pneumonia. No fecal tests. I don't think they really expected the sweat test to come back high to be honest. I went to the appointment with my old paper work and I think that is why reordered all the tests....but I was told to just call his office and someone would give me the results over the phone. Now they are saying they will call me as soon as the genetic results are in. I don't know, maybe I am just a carrier. Thanks.
Aboveallislove
Super Moderator
Well there are folks with only one known mutation that have cf...but ve never heard someone told they don't have cf if the sweat test s over 60 just because they only find one mutation. I'd call back ASAP and ask for a cf appointment. Get cultures...get on albuteril pulmozyme, some clearance...if you have sch sinus and lung issues they should be treating for cf he given your sweat results...you want to know the mutation too, but your sweat test from everything I've ever heard is i agnostic for cf. I'm so sorry. Good luck!
No news on the genetics yet but I had a methacholine challenge for asthma/hyper-reactive airways ( at least I believe that is what they said it was for) and I failed it. I had a reaction to the second dose and my lung function dropped 26%, the tech just said it was a moderate reaction and I would hear from the doctors office. The hematologist I was seeing still has no idea why my white blood count and neutrophils are raised but seems to have ruled out all serious causes. I have also been taught and approved for the I.v. Self infusion of my angioedema so I can treat at home. Besides that still playing the waiting game. Thanks all.
Aboveallislove
Super Moderator
You could be culturing something which would explain I think the elevated white blood count....I think that happens when you are fighting an infection? Maybe you can google that or someone else can jump on on that, but I'd ask for a throat culture.
My immunologist realized my WBC had been raised for at least 7 years ( as long as he had paperwork for) and sent me. I just got off cipro a week before seeing the hematologist and it was still raised. Once all the results are back I will be pushing for some answers, and more tests if needed. Thanks.