Thanks. I'm in my 3rd antibiotic this week. Prednisone. If I have cf.. Will this help some? Sorry to be asking a million questions.. I just most likely gonna be going back to work tomorrow.. It's a physical hot job. Been on short term disability for the last week and a half and don't feel better with shortness of breath. Coughing etc... I wanna go back to work but I know I'm gonna feel like crap... Spoke I could go to the Dr. And have him extend it. But I'm also tired of being stuck inside... Dshdjdd. This sucks
Questions to (Hopefully) Reasure myself.
- Thread starter loophole
- Start date
W
welshwitch
Guest
YES! IF you are diagnosed, there are many, many meds and therapies that will help you. The key is just getting an accurate diagnosis. Keep fighting for the right one. I'm lucky enough to be a 33 year old woman with CF in great health, but if I wasn't correctly diagnosed when I was a baby, I wouldn't be here.
W
welshwitch
Guest
Also, take everyone's advice here and get the full sequence genetic test. This is the true key (unlike the sweat test, which we all know isn't always accurate).
G
gunelle
Guest
When you start on the medication and do your exercise therapy you will feel a lot better. Before my diagnosis I could get really sick and feel like cr** but I do not feel that way now, not to that extent. I get sick yes, but more mildly... I hope you will get an answer soon, it is really a blessing to find out what is wrong, believe me. I was diagnosed at 32.
My allergist referred me to a resperologist who decided to do a genetic test for CF based on my prior positive and negative sweat tests. (They also couldn't figure out what was causing my symptoms.) Once the test came back positive, I was quickly referred to the CF clinic. I think you're entitled to demand a CF test. Good luck moving this forward.
Sounds like me to the T. I'll be going to the Dr. tomorrow most likely and since I've been to an allergist before (grant it, it was 15 years ago... I was literally allergic to all dust/mold/pollen there is etc... only two things I showed negative on the prick test was cats and dogs.) So I don't see how they can tell me anything different as it's already been stated my allergies really can't get much worse... I'm not going to take no for an answer and go to one of the cf clinics you guys recommended through the ccf.org website. I'm also taking my mother with me.... yeah I know.. heh. She has all the ct scans.. everything dated back from when i had my tonsils and adnoids taken out up to basically when I left the house. So she can give all that to him and how it was with me growing up. I can take on the last 8 years and explain to MY dr. (the last time I went it was his wife because he was off for the day)... With my mother coming he should be less inclined to turn down me going on short term disability for another week... last time i tried to go back i had to use vacation days and ended up in the nurses office .. took literally a month and a half to recuperate to some form of normalcy.. thanks again. I've been on forums before but nothing as genuine as this one. If it weren't for this forum I wouldn't know of the different tests and may of (hopefully not but possibly) found that I had a form of CF. Thanks to all. I know somethings not right.. it's been all my life.. I hope it's not this.. but I obviously hope it's not something worse... Im really very nervous about all this and I don't think people understand unless they've lived through some form of it.... I know i've at least lived through a few forms through my life.. obviously nothing to the extent of some/ a lot of you... but my chest feels like its about to cave in so i'm gonna stop rambling.. thanks again.
Good luck tomorrow...if he/she doesn't refer you, then make the appt to the center on your own if your insurance doesn't require referrals. I know of many people who did just that. I was fortunate enough to have a PCP who actually suggested that I get CF tested, not the other way around. I am forever indebted to her, I believe she saved my life. Unfortunately, people like yourself still have to go through hoops to get anywhere. I hope that you get answers soon either way. If it is CF, then you will get the treatment you need to feel better and improve your lung health. It has made a huge difference in my life...admittedly, it is alot of work (multiple nebs and chest physio, IV's when necessary which are pretty frequent for me) but worth it in the end. Keeping my fingers crossed...keep us posted!
Jenn 41 wCF
Jenn 41 wCF
Thank you, going to request him and indy first and go from there. THANK YOU
Just checked with that clinic. They said they are not offering the genetic mutation testing there.. I hate to ask but if anyone can give me one in surrounding areas.. chicago....etc... i'm located in north central kokomo i'm calling around myself. Thank you
Ok after making a few phone calls... one person said I could go to any lab.. to have the lab work done (basically any hospital) and they would do a "send out"..317-491-6000 was the number for the dr.(lab) to get the info to send it out.... is it ok to go to any lab.. or would i be better off going to a cff center in indy. and having them do the lab work and have it sent out... I would think lab work would be "lab" work.. but I'm not sure... Possibly that's the dr. I should be seeing before my lab work to decide what steps I need to take? Sorry I'm extremely new to this.. normally dr. takes care of it all.. but i should be going to a different dr. besides a local one he may offer. he probably will just offer up lab tests..... if i should be referred let me know.. sorry and thanks
Agreed. Well I officially got the Dr. to completely listen this time and get it hinted to him that I very well may have CF.. or at LEAST an underlying problem that exsists for me being sick with lung/sinus/throat infections all the time. I feel like I've lived on amoxociilan(spelling?) for half my life. Course I'm 30 and had to bring my mom in there... heh. Ohwell I was at that point and was basically going to demand a referral to a cff specialist. My mom mainly came because she had all the documents of when I was younger.. that I have a hard time remembering.. ct scans etc... allergist tests that were done. Bad thing is, is that there is only 3 cff centers in the state.... and the MD can't see me until JULY 3rd. It was actually the one that the guy referred me to a page or 2 back. Stinks to wait but like you said their are no short cuts.. I'm just glad my dr. listened... I had 2 hours sleep last night from the coughing and gagging.. 4 the night b4.....I just crashed after the dr.s visit for like 3 hours... shortness of breath is wearing me out quick. The Dr. basically agreed saying that I have a pattern yearly of the same symtoms, illnesses, and that they don't seem to be improving, if anything getting worse.. and it has been worse the last 4 months. They said a package would come in the mail from the office, with plenty of info. I'm also on a call list to be moved up as well, if the Dr. looks at my records and sees concern to move me up some I may get in quicker... here's to hoping..... Thank you all... I will keep ya posted but it may be a while. I probably will be in here fairly often with a question or 2.... Have an inhaler(prescribed, see if it helps at all with shortness of breath) until the time being... other then that.... just drink water and try to improve
While you're waiting for your appt, if you don't already do this stuff, here are some things you can do:
neilmed sinus wash with distilled water 2x a day
Nebulize albuterol 2x a day, or at least use a ventolin inhaler.
Google postural drainage or chest physical therapy and work on clearing out your gunk before bed and when you wake up. (Your wife can learn how to cup her hands and hit your chest and back.)
You can buy an acapella choice online for about $60
(I had to wait months after my DX for an appt with a hospital's PT dept to teach my husband chest percussion.)
Also read the exercise section of this forum. You'll see a lot of people improved their mucus clearance with serious dedication to exercise.
neilmed sinus wash with distilled water 2x a day
Nebulize albuterol 2x a day, or at least use a ventolin inhaler.
Google postural drainage or chest physical therapy and work on clearing out your gunk before bed and when you wake up. (Your wife can learn how to cup her hands and hit your chest and back.)
You can buy an acapella choice online for about $60
(I had to wait months after my DX for an appt with a hospital's PT dept to teach my husband chest percussion.)
Also read the exercise section of this forum. You'll see a lot of people improved their mucus clearance with serious dedication to exercise.
I'm glad to hear the appointment went well and you are being referred. Hopefully, they'll be able to move you up. I also had to wait about two months before I saw a respirologist, which eventually led to my CF diagnosis. It was a frustrating wait, but I was relieved when they finally figured out what was wrong.
my appt was moved up to today. was pretty impressed with service.. very nice...... so far they gave me a few shots... took blood work for 4 types of things.. cf being one or two of them(different types)... also 2 lung diseases.... for the time being he has put me on pro air, qvar inhalers... for daily use.. he also gave me 4 refills as needed on zpac and prednisone... for when it starts to get bad which it is..... its better then 3 weeks ago but still short of breath. chest tight.. plenty of congestion and coughing a lot...... i'm still hacking it through the night.... prednisone i was on before and didn't notice much diff... as well as pro air... i'm really hoping that the qvar can be my save all... and that asthma is the case.... i'm hoping the lab results don't take too long..... was glad to get in... was july 3rd.. called and said may 8th... (2 days from call) got right in... pulled a muscle in my back from hacking so hard last night... i really just want them to come back and say ok its this.. if they come back and say all negative... i'm gonna be super depressed... because i know my body and i know that i'm so burn't out and tired of feeling this way.. having better months here and there and way worse months other times... it seems to have been getting worse slowly over the past 3 years... so if all negative.... i'm gonna feel super hopeless...
D
Deb
Guest
Sorry I missed this thread for so long. I was diagnosed at age 24. My local doctor told me there was no way I could have CF because it would have been diagnosed when I was young. Fortunately my husband knew a family with kids who had CF and they recommended Indianapolis. I actually started going to the CF Clinic at Riley's because there was no adult CF clinic back then. My CF diagnosis was confirmed here and I have been going to the CF clinic every since. It is almost a 3 hour drive for me. Fortunately they now have an Adult CF Clinic at Indiana University Hospital. And yes, my doctor is Dr. Ober.
Glad that you have finally been able to get in and get tested. Hopefully you get an answer soon. Also, Jana Yeley, the nurse practitioner is wonderful. I actually see her more than Dr. Ober. Feel free to email me if you have questions; I don't get on here on a regular basis.
deedrich.debbie@gmail.com
Glad that you have finally been able to get in and get tested. Hopefully you get an answer soon. Also, Jana Yeley, the nurse practitioner is wonderful. I actually see her more than Dr. Ober. Feel free to email me if you have questions; I don't get on here on a regular basis.
deedrich.debbie@gmail.com