I was just recently diagnosed at age 76! my son had cf and died in 1991 at age 28. no one ever suggested that I be tested all those years, although I had digestive issues and coughed up mucous each day. is there anyone else out there over 65 yrs. old or older diagnosed at a late age? there are so many changes in cf care now, since 1991 I am lost. the medicines given to me this past week to nebulize are creating a fast heart rate, jitters and a woozy feeling all day. I am nebulizing albuterol, saline solution twice daily. and pulmoyzine once each day. I was not having any lung problems or beathing problems and no infections or sickness in years, just gas, bloating and discomfort after eating. the cf dr. tells me i have pancreas sufficiency and don't need any enzymes. now with these medicines I feel weak, dizzy and too tired to do much. I have always been active and felt healthy except for the digestive problems. I feel like I don't need all this treatment. they are in the process of getting me a "vest" to help remove mucous from my lungs. it you were diagnosed late in life, please let me know your experiences? I feel like I just want to stop all of this treatment and go back to living my active, mostly heathy life. help! do I really need all this after living a full life for 76 years without any treatment?
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diagnosed at age 76
- Thread starter oldcflady
- Start date
Aboveallislove
Super Moderator
Wow. I can imagine how hard that is....two quick things...call ASAP and ask to be switch Ed to xopenex or the generic of leverbuterol...it is suppose to have less of the fast heart jittery stuff. My brother in law who is a doctor and also our sons general ped told us hat so we called cf clinic and had them do. Second, find out ASAP what mutations you have because some meds can fix the cf mutation
Aboveallislove
Super Moderator
Do you know your mutations yet?
S
stephen
Guest
oldcflady;
Let me start by saying I’m really sorry you lost a son to CF.
For you at your age, the diagnosis could prove to be a real blessing. It was for me being diagnosed at the age of 63, almost nine years ago. (I believe someone on this site was diagnosed at the age of 80.)
I say a blessing because after coughing up green crap and running low grade fevers for as long as I could remember, and eventually developing bronchiectasis and bleeding, the CF diagnosis resulted in a drastic turn around thank G-d. This was due to the drugs that became available to me. Others on this site who were diagnosed later in life have had similar experiences. I truly hope find the same.
From my experiences with three different CF centers, I don’t think the medication you started taking should make you feel worse. I can’t speak for digestive issues, but as far as pulmonary issues are concerned, my treatments have always been based on Sputum Cultures, PFTs, X-Rays, CAT Scans, Bronchoscopes, and most importantly - how I feel. Unless my condition specifically warranted it, my doctors usually stopped a drug, or prescribed an alternative, if it resulted in more than just mild undesirable side effects.
Glad you found out there are alternatives to Albuterol that may not cause the fast heart rate and jitters. I’m using Ventolin for those reasons. You may want to talk to your doctor about taking a bronchodilator with an HFA Inhaler, and not with a nebulizer. It’s much easier and quicker, and may be just as effective.
As Aboveallislove said, you should get full genetic testing to identify which mutations you have. There are fantastic new drugs you may be able to get depending upon which two mutations (and classes) are found.
If you run into difficulties getting the testing, take a look at the Cystic Fibrosis Foundation’s video presentation "Roadmap to a Cure: Advancing New CF Treatments". At time 17:30 in the presentation information is given about getting genetic testing “free of charge to all US patients with CF who do not have 2 identified mutations". The link to the presentation is:
http://www.streamcrate.com/CFFWebcast/ResearchUpdate/
As you may already have found, a lot of great information is available on this site. I hope your CF diagnosis results in a better quality of life for you.
Let me start by saying I’m really sorry you lost a son to CF.
For you at your age, the diagnosis could prove to be a real blessing. It was for me being diagnosed at the age of 63, almost nine years ago. (I believe someone on this site was diagnosed at the age of 80.)
I say a blessing because after coughing up green crap and running low grade fevers for as long as I could remember, and eventually developing bronchiectasis and bleeding, the CF diagnosis resulted in a drastic turn around thank G-d. This was due to the drugs that became available to me. Others on this site who were diagnosed later in life have had similar experiences. I truly hope find the same.
From my experiences with three different CF centers, I don’t think the medication you started taking should make you feel worse. I can’t speak for digestive issues, but as far as pulmonary issues are concerned, my treatments have always been based on Sputum Cultures, PFTs, X-Rays, CAT Scans, Bronchoscopes, and most importantly - how I feel. Unless my condition specifically warranted it, my doctors usually stopped a drug, or prescribed an alternative, if it resulted in more than just mild undesirable side effects.
Glad you found out there are alternatives to Albuterol that may not cause the fast heart rate and jitters. I’m using Ventolin for those reasons. You may want to talk to your doctor about taking a bronchodilator with an HFA Inhaler, and not with a nebulizer. It’s much easier and quicker, and may be just as effective.
As Aboveallislove said, you should get full genetic testing to identify which mutations you have. There are fantastic new drugs you may be able to get depending upon which two mutations (and classes) are found.
If you run into difficulties getting the testing, take a look at the Cystic Fibrosis Foundation’s video presentation "Roadmap to a Cure: Advancing New CF Treatments". At time 17:30 in the presentation information is given about getting genetic testing “free of charge to all US patients with CF who do not have 2 identified mutations". The link to the presentation is:
http://www.streamcrate.com/CFFWebcast/ResearchUpdate/
As you may already have found, a lot of great information is available on this site. I hope your CF diagnosis results in a better quality of life for you.
I was diagnosed at 34, which I thought was late. Like the comment above, I found that once I started treatment I was feeling better pretty quickly. Although I've only observed it for the last 12 years, things have changed a lot in CF care in the last 20 years. People are living a lot longer, as well.
I am pancreatic sufficient, but I have similar GI symptoms as you: bloating, gas, discomfort after eating. I had a gastric emptying study, which determined my stomach was very slow to digest food. They put me on a medication called Cisapride to help address this. (I don't know about the US, but this drug requires special approval in Canada.) I take it before meals and it's helped a lot with bloating and discomfort after meals. I also discovered through x-rays that I was constipated even though I was going to the bathroom every day. I now take laxatives and mineral oil daily for this. My GI symptoms have improved a lot. It would probably be a good idea for you to see a GI doctor who specializes in CF patients.
It sounds like your doctor hit you with a lot of medications all at once. My observation from these forums and from talking to my doctor is that people usually take hypertonic saline OR Pulmazyme, not both. The two drugs work in different ways, but both are supposed to make it easier to clear your lungs. Pulmazyme caused me to cough up blood and did weird things to my voice, so I use hypertonic saline.
The time commitment for medical treatments is frustrating. It took a while for me to get used to and I started with less treatments than it sounds like you're doing.
I hope you can find a balance in your treatments so you start feeling better.
I am pancreatic sufficient, but I have similar GI symptoms as you: bloating, gas, discomfort after eating. I had a gastric emptying study, which determined my stomach was very slow to digest food. They put me on a medication called Cisapride to help address this. (I don't know about the US, but this drug requires special approval in Canada.) I take it before meals and it's helped a lot with bloating and discomfort after meals. I also discovered through x-rays that I was constipated even though I was going to the bathroom every day. I now take laxatives and mineral oil daily for this. My GI symptoms have improved a lot. It would probably be a good idea for you to see a GI doctor who specializes in CF patients.
It sounds like your doctor hit you with a lot of medications all at once. My observation from these forums and from talking to my doctor is that people usually take hypertonic saline OR Pulmazyme, not both. The two drugs work in different ways, but both are supposed to make it easier to clear your lungs. Pulmazyme caused me to cough up blood and did weird things to my voice, so I use hypertonic saline.
The time commitment for medical treatments is frustrating. It took a while for me to get used to and I started with less treatments than it sounds like you're doing.
I hope you can find a balance in your treatments so you start feeling better.
Thanks to all who have responded. you gave me some very good information and most importantly encouragement. at my clinic visit this week the doctor also gave me a prescription for some enzymes, even though I am pancreas sufficient. I have only taken them one day so far, but I am hopeful this will help my digestive problems. I also got word that my vest should be received sometime this week.
I got a copy of my genetic testing report, and found a helpful source to try and interpret it. I learned a long time ago that I needed to just take one day at a time with my son. now I am having to learn that all over again. This website is wonderful. it is so nice to know that I am not alone in struggling with CF. back in the 80's and 90's my son formed some very strong friendships with others at the CF clinic during his lifetime, but he did not have the access to the internet, and all the knowledge that is out there today. He did take part in several drug studies at NHI that have contributed to the improved treatments and life spans of today's CF patients. He faced so much as a child and young adult. I can certainly hang on and deal with my CF now. Thanks again.
I got a copy of my genetic testing report, and found a helpful source to try and interpret it. I learned a long time ago that I needed to just take one day at a time with my son. now I am having to learn that all over again. This website is wonderful. it is so nice to know that I am not alone in struggling with CF. back in the 80's and 90's my son formed some very strong friendships with others at the CF clinic during his lifetime, but he did not have the access to the internet, and all the knowledge that is out there today. He did take part in several drug studies at NHI that have contributed to the improved treatments and life spans of today's CF patients. He faced so much as a child and young adult. I can certainly hang on and deal with my CF now. Thanks again.
K
kgfrompa
Guest
Welcome ! I was diagnosed at the age of 50 I will be 58 next week,I need enzymes and is said that i have a milder case of Cf.I am so blessed to have this community as well it has made me feel like i am not alone and I can pretty much get anything answered that i am going through I learn so much from reading others posts and am so grateful to each and everyone here.