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adeptone777
Guest
Cannot find a pulmonologist with experience in treating the older patient. Any suggestions where to look. Would like hear from anyone with similar experience.
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laurieb5
Guest
The first thing you need to do is find the nearest CF center where you live call them set up an appointment and let them know its for you and that your an adult with CF... My CF center only sees adults on Mondays the rest of the days are for 18 and under... Best of luck to you 
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welshwitch
Guest
Holy Cow -- 73! Finding this site will help you a lot. Also, Certified CF Center is key! Good luck. We have a few older patients on this site who may be able to help you or give advice/share experiences.
azdesertrat
New member
Holy cats! What symptoms have you been 'enjoying'?
My Wife sums up all my problems thusly, 'He's (me) an OldGuy with CF!' I'll be 49 on the 31st.
I REALLY feel like I've aged an awful lot since '03. The last 10 years have not been kind.
Best of luck to you; if you've lived this long with CF you must be doing SOMETHING right!
My Wife sums up all my problems thusly, 'He's (me) an OldGuy with CF!' I'll be 49 on the 31st.
I REALLY feel like I've aged an awful lot since '03. The last 10 years have not been kind.
Best of luck to you; if you've lived this long with CF you must be doing SOMETHING right!
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Gorf
Guest
WOW!! Who diagnosed you with CF at that age, I had heard it can happen, that symptoms show up that late but wow. I know of a young lady at my clinic that didn't find out till she was 26. I would get on CFF.org site and click on find a care center to find the nearest CF clinic. It also shows adult clinics if one is in your area. I would say do this as soon as possible, I will be 48 end of the month. The last 3 years have been a steady decline for me. God Luck! Gorf 48 year old male.
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bookworm
Guest
In the US, it appears that the CF center that is doing most of the studies on older adults with CF is National Jewish Health. Here's an article that might help. : http://www.disabled-world.com/health/respiratory/cystic-fibrosis/cystic-fibrosis-seniors.php I believe some of the older patients in this forum have gone there and will be able to comment. They currently have a study with the most promising cystic fibrosis drug Kalydeco. Although Kalydeco is most effective for a specific genetic mutation, it is being tested at National Jewish Health on some other mutations that may receive benefit from it.
The hospital is the leading place in treating mycobacterium avium, which is often found in older female adults with cystic fibrosis. No-one has mentioned it so far, but if you enjoy exercise and are active, please continue! It's one of the best things for your lung health.
The hospital is the leading place in treating mycobacterium avium, which is often found in older female adults with cystic fibrosis. No-one has mentioned it so far, but if you enjoy exercise and are active, please continue! It's one of the best things for your lung health.
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trghpu1994
Guest
I went to National Jewish last year for asthma and can say they did amazing things for my asthma, I haven't been this healthy in years. I know its not CF, but just my personal experience with them.
I was finally diagnosed at 64 and this was a good thing. I lost a sister to CF 40 years ago and knew I was a likely carrier. I had lung problems all my life but could not convince pulmonologists that if might be CF, not just bronchiectasis. Lungs got worse as I aged and suffered lung damage from many bouts of pneumonia and loss of lung capacity. Finally 3 years ago I was in bad shape and got referred to Dr. Belkin in Santa Barbara, CA, who specializes in adult CF patients. He did genetic testing and sure enough I have two gene mutations. I am pancreatic sufficient. With all the CF treatments I am feeling better the last few years than I had for 5 years prior. I now think I can be around for a few more years. I lead an active lifestyle swimming laps, walking, playing golf. The swimming is what kept me going all these years with no real treatment.
Dr. Belkin now heads up a CF Center at Cottage Hospital in Santa Barbara. It is not yet accredited.
Wishing the best and hope this information is helpful.
Dr. Belkin now heads up a CF Center at Cottage Hospital in Santa Barbara. It is not yet accredited.
Wishing the best and hope this information is helpful.
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kgfrompa
Guest
Welcome wow what area do you live? I was 50 when I was diagnosed and I am 57 now,I have had so many problems with my health but I have the beat CF Doctors I think In the world I am looking to here more from you here I am glad you found us but sad you have CF.
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stephen
Guest
adeptone777
At this age you should probably welcome the CF diagnosis - and find a good Adult CF Center!
Like bharison above, I was diagnosed at the age of 63. I too am pancreatic sufficient but suffered with a life long cough, lung infections, and bronchiectasis.
Since my sweat tests were always normal, numerous doctors at top New York hospitals never diagnosed CF. My problems were attributed to immotile ciliary syndrome. It was only when the bleeding became worse in 2005 that I went to Nation Jewish. They diagnosed CF through genetic testing.
Also like bharison, the diagnosis was a blessing. With all the CF treatments I am feeling better than I have in years, thank G-d. Hopefully you too will have a similar experience.
At this age you should probably welcome the CF diagnosis - and find a good Adult CF Center!
Like bharison above, I was diagnosed at the age of 63. I too am pancreatic sufficient but suffered with a life long cough, lung infections, and bronchiectasis.
Since my sweat tests were always normal, numerous doctors at top New York hospitals never diagnosed CF. My problems were attributed to immotile ciliary syndrome. It was only when the bleeding became worse in 2005 that I went to Nation Jewish. They diagnosed CF through genetic testing.
Also like bharison, the diagnosis was a blessing. With all the CF treatments I am feeling better than I have in years, thank G-d. Hopefully you too will have a similar experience.
You have two copies of DF508? It is very rare to be pancreatic sufficient with that gene, and to be picked up so late! Your story will inspire many with that same genotype. In the UK, a CF diagnosis immediately triggers a referral to the most local CF centre. They would put you on a daily prophylactic antibiotic and possibly extra vitamins, maybe some nebuliser treatments for your lungs. They would also x ray your chest and possibly scan your liver, which is standard for CF patients here. You can be assured you will be extremely welcome in the CF community, it's a diverse collection of people of all ages and experiences. I hope you have a good CF centre where you live. Our CF team are almost like family! x
USC - Go Trojans! is a well known CF Center.
Also I think it is Long Beach Memorial Hospital has one.
LittleLab4CF
Super Moderator
If you don't find what you are looking for with the suggestions already made, Dr. Jerry Nick is the Adult CF Director at National Jewish Health in Denver Colorado and for certain a 73yr old CFer won't get that medical freak feeling.
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CrisDopher
New member
Hi! Welcome to the world of cystic fibrosis and to one of the tightest, most knowledgeable communities in the world. If you'd like to join an email list, I'm the moderator of the cystic-l google group. You can track us down and apply for membership at: https://groups.google.com/forum/?hl=en&fromgroups#!forum/cystic-l (you'll need a Google account to join). We have LOTS of older members, some of your age.
Cris Dopher
Cris Dopher
As a 57 year old that has been struggling w/ CF my whole life my comments on this thread all have to be censored. You have made it to 72 and the majority of us on this list have very little hope of ever living that long. I should say congratulations for living this long but some how I just can't.
I too live in OC, am 57 and I go to USC. I love my clinic, docs and hospital. Your only other choices would be San Diego or Long Beach but last I heard LB isn't accepting new patients because the doc wants to retire. Message me if you'd like more info on USC. I can't even fathom living all those years without knowing you have CF. And I thought I was a late DX at 25!! Good luck whichever clinic you choose, it is so important to be seen at one and start proper treatments. Here's a link to the centers http://www.cff.org/LivingWithCF/Car...tion-accreditedCareCenters/index.cfm?state=CA