Adults and older CF patients regarding the CF centers and getting diagnoised.

[madmax33]

Hi everyone. I posted a long story here and being so overwhelmed my self and many questions I think I just confused things. Now just a question in regards to the CF cents. How rare is CF in adults over 50? Are most CF centers aware of the newly diagnosed older generations. Is it so rare, that even with a Positive Sweat Screening test and symptom's, (but say you have other condition's because you are older) That a CF center would be more swayed to think it is not CF. I would like to hear from the Over 50 CF.ers or ones diagnosed later in life about there story to get diagnosed.. I am in the process, of now getting a second test, through a CF center next week. So I will update on this.

Now Please don't take this wrong, or Hope I am getting this across correctly. The CF center I went to, even with the positive test I had here for the referral, said to me, At 59 yrs old I doubt it very much that you have CF. Ok so wondering if this had happened to older patients. This is so surprising to me and not what I expected so it has left me sitting on edge. But he is following through with his test , and we will see. With the struggle I have had for yrs and how ill I am now, I sure do not want to fight a diagnose and look for treatment on a disease if no matter what, the belief is you DO NOT HAVE IT. I already have enough of this, and many records with no treatment, no concern, no follow up. When you are not feeling good to begin with and fighting for your life, and feel no matter what you have, you are being dismissed. (A lot of this goes on where I Live) a other story a other time.)

Is CF that rare???Over 50. Can you have a high sweat screening test, and many symptoms and still not have CF??? Love to hear what others have gone through, how the CF centers in general deal with the new diagnoses'. Is this something a matter of opinion with the CF centers, are there Drs out there that don't believe you can have CF when you are older, then 50? even if everything is pointing this way??? This is kind of where I am at now, but in the process, so trying to find out if others have shown they have it, positive sweat and symptoms' all there life, etc, but being told no?? I am new to this and so curious, and would love to know other experiences , what to expect if you are diagnosed, and the attitude and what the belief is in the medical community of a diagnose of CF later in life. I do not want to fight a battle, if it really is the attitude of "Impossible to have it if you are over 50 with the medical community." I have read a lot about it on the internet, so I see many new diagnoses'. Also being Chronic with other health Problems, is this a loosing battle to get a diagnose because of this??? Let me know your thoughts, what road you had to go down.

 

[Printer]

Diagnoses for people over 50 is becoming pretty common. I was diagnosed at age 47 and there is a woman on here who was diagnosed at age 76.

Go to an APPROVED CF CLINIC and see a CF SPECIALIST. Don't let age hold you back.

Bill

 

[Hail2Pitt]

I agree with Printer. While most CFers are diagnosed as kids, some of us are diagnosed as adults.

You absolutely must go to an approved CF clinic - you can find them on the cff.org website. They will know that folks are indeed diagnosed as adults. They also will tell you that a positive sweat test means you have CF. I don't know your health history, but I can tell you that I was diagnosed as an adult, and I was in very poor health at the time. Once you're diagnosed, you will have access to drugs and treatments that you don't have access to now. Starting a CF treatment regimen both saved and changed my life.

Before being diagnosed, I saw some of the supposed top pulmonologists in the DC area, one of whom treated CF patients (though he wasn't part of an approved clinic). He told me there was no way I'd have CF. And wow, was he wrong. Thank God I did not listen to him and kept searching for an answer!

Good luck!!!

 

[madmax33]

I have gone to a CF CENTER

1. Thanks for the reply. Just trying to figure out things. Was surprised at the CF Center I went to, The closet one to me and it has taken yrs to get there!!!Maybe here in Ca there are not to many adults older at these centers??? Love to hear from a Older Adult who has used this center. But they all talk to each other I would guess. Cannot get in with out a referral and cannot get in without getting a Sweat test (Screening) A machine that does this at a hospital. Well anyways that came out at a positive 90. I have waited a month and went to the CF Center. This center was 2 and a half hrs away. The DR made a statement that is would be very unlikely that I would have it because of my age.. Just turned 59. I have the Pancreitis problem, Chronic asthma, Well all of it and have had these issues all my life. They are going to do there Sweat test, so I will see what happens. I just wanted some adivice and others input on this, I just hope I don't get dismissed here. The Dr seemed very concerned and that he was going to help me. SO With all the problems I have had up where I live, It is just a other let down, or a feeling of your nuts!! When a Dr wants to ask you WHY YOU ARE HERE AND WHAT WOULD MAKE YOU THINK U HAVE CF? So i told him. THen he said people my age do not have it , be very unlikely. Very rare. SO I find that surprising , and maybe things will change when I have there sweat test. Just hope THey don't tell me NO WAY. ONce a Dr feels something is impossible or it does not exsist , My experience things Don't get better they get worse. Really don't know why I was asked that, with a Sweat Screening??? Of 90 , i have ammonia right now , pleurisy, chronic Bronchitis, been on pancritis enzemys since 2010 ,(almost died from stomach problems and weighing 80 blbs) I have the two partial collapsed lungs right now, A ct shows Mucus plugs???? I can go on and on. I have been so dismissed where I live, Not matter what I have or how serious it is.

 

[madmax33]

Thanks for the reply. I went to the one up here. But that is where I was told, very unlikely at my age. Just really confused at this point. I am set up with them for there sweat so will have to just wait and see.. Cant stress anymore or try to figure this out, just not doing well. already had a sweat test here at the hosp, I guesss this is a screening test? Done with a machine, and mine was positive at 90. I guess this did not intrigue the Dr. I kind of took it that the reason being he is not thinking this is CF. is just because I am to OLD!!! So go figure. This has me concerned a bit. Even with a CF Center. Not What I expected for getting this far, and these are the ones I expected to not even say anything other then it is possible, until they know otherwise. When you have been dismissed and ignored by the medical community for yrs and seeking out answers, that is enough to make anyone even sicker. Not that anyone wants to have any disease, but having a answer is a lot so at least know and what to expect. In my search for at least the last 10 yrs every time I was looking at symptoms and possible diseases I kept hitting on CF.. I just thought it was impossible.

 

[njlins]

So very sorry for the lack of compassion. Sure sounds like you have enough sympptoms and positive sweat test. My sweat test was 84 done at age 53. I also had the genetic test done that showed the DF 508 gene and later the second gene was found. But the centers always took me serious and as a result I did get better. The Pulmozyme was a lifesaver. I just turned 70 so hopefully you will get better too. I did see a regular pulmonary doctor after the original diagnosis and she was not helpful. The real help I needed came when I went to the CF center in Philadelphia.

 

[Printer]

madmax33:

If you went to an APPROVED CF CLINIC and saw a CF SPECIALIST, he / she would know that you are not too old to be dx with CF. No CF SPECIALIST would tell you that. Something is wrong with your story and you are wasting my time. Get your story together and present the facts including the APPROVED CF CENTER that you went to and the name of the CF SPECIALIST.

Bill

 

[madmax33]

sorry you think I am wasting your time bill, not what I would expect from a CF board and looking for advice!! I was from the CF Center first to go to a hosp or lab in my area what does the screening. I had what was called a Screen test and not sure of the difference. OK> One greater then or equal to 50mmol/L should be referred to a specialized cystic Fibrosis care center. Mine was 90 and abnormal. OK so yes I was sent to the CF Center. I think you are being a little bold here and I sure don't need it. I don't need to name drs or anything else when I am trying to figure out how this works. And YES I did go to the CF CENTER and that Dr did state to me, It would be very rare for you to have CF at your AGE!! Fact. Does not matter and this is why I posted here to other members to see how rare it is, and so forth. the age Span for CF is 36 yrs old. FACT ok I am set up for there sweat test ok. I have stated I would post later after my appointments. This is all new to me. you do not have to respond bill, if you do not want to be helpful or call me a liar, then feel free not to respond.

 

[madmax33]

Also bill, when I have not even completed there test, and confused on this, I do not find asking questions to CF members, do I want to name Centers and the DRS NAME, and be questioning him, on a public board. GET IT????? What is it to you, are you going to call him and ask if this is what he told me???? Like you want to follow up. You basically are calling me a liar and I don't appreciate it. Never would have posted here, If it was not true and trying to find out how rare?? And if some CF centers do not have adults this old. I was quite shocked and not what I expected from the CF CENTER.

 

[jaimers]

Hi Max,
It would definitely be worth pushing for full genetic testing since you had a positive sweat test. I would talk to the doctor you saw at the CF clinic and find out why (s)he thinks you don't have CF. Dismissing it simply because of age isn't reasonable and you should fight that. If they refuse to do anything I would seek a second opinion. I think you mentioned you are in California. Here is a link to all of the accredited CF centers in the state. Hopefully if your current center isn't willing to get to the bottom of your issues you can find another one that will help you. good luck!

http://www.cff.org/LivingWithCF/Car...tion-accreditedCareCenters/index.cfm?state=CA

 

[madmax33]

Thanks for your reply. No the Dr just has not dismissed it. It is what he said that has thrown me off. I found that very odd and not what I expected at all. Now Bill is calling me a liar?? This is why I reached out on the board. Don't want to make a mountain out of a mole hill. Don't have any idea now why this Dr said this to me. But it is a CF Center. I am getting there sweat test next week. Need to make that clear. It was a Test I had here at the hosp (mercy) as this is what the CF Center told me to do first. It is called a screening test.???I do not know the difference. Ok But mercy referred to it as a sweat test. ALso after this test and setting up the appointment at the CF Center the nurse asked me what the results where, and she said that is a positive. I understand ALL CF Centers require to do there own for a diagnose. So that is what I am doing now.

 

[madmax33]

other quick question.

I am almost certain my sweat test will come out positive. Should Imagine then they will proceed with a full genetic? Regardless and I do not want to get into it again, but I have my fears and will only go from there after there test. I do not want the DR even with a positive to then dismiss it or say it is something else. again why I was looking for other CFers experiences. I just have to many symptoms. I plan on pursuing this and hope this dr will do all the full test for me.

 

[gunelle]

Im 38. Diagnosed at 32. I also have got my fair share of 'it's impossible you uave cf'. So push for a blood test. Mine confirmed 2 mutations although my sweat tests have been on the limit and negative. My cf doctor started giving me treatments before my diagnosis, that is his way. He says that he's not going to let anyone suffer if they needs treatment and happen not to have the correct diagnosis. Good luck.

 

[Beccamom]

Bill, you are incorrect. I have heard this countless times while trying to figure out my daughters complex medical issues. Also Not all CF specialists at CF centers are educated on CF. Some hospitals list all pulminologists as on the CF team when actually only 2 of the doctors attend the CF conferences etc. my daughter nearly died because of this.

madmax33:

If you went to an APPROVED CF CLINIC and saw a CF SPECIALIST, he / she would know that you are not too old to be dx with CF. No CF SPECIALIST would tell you that. Something is wrong with your story and you are wasting my time. Get your story together and present the facts including the APPROVED CF CENTER that you went to and the name of the CF SPECIALIST.

Bill

 

[Beccamom]

I would call the CF center you went to and ask what percent of CF patients are seen by the doctor you saw. We're you seen at a children's hospital? My experience children's hospitals diagnose the fewest patients. There are two sides to this story and I have experienced both. I was diagnosed by an adult CF center based and genetics and a moderate sweat test. My daughter has no diagnosis but does the same treatment as me. My 15 year old incorrectly diagnosed with asthma from age 6months to age 11. She saw pulminologists at two different CF centers in 2 different states since we moved. From 4 to 11 she was inappropriately treated for asthma at a CFF accredited CF center by a pulminologist listed on the hospitals list of CF specialists. By age 11 her FEV1 was 50% and she had secondary adrenal insufficiency from 4 times the FDA recommended dose of inhaled steroids for two years. We switched hospitals and CF was suspected for the third time in her life. Through a clinical trial for CF testing at the original hospital I learned that the CF pulminologist we saw for 7 years had no CF patients on his case load. I was furious. We now see an actual CF specialist. Her FEV1 is in the 90s and has hit 100% a couple times. This took 2 years of CF treatment with hypersal nebs, mucus clearance vest, and antibiotics based on sputum culture. It is still hard though for me to properly care for my daughter. Just yesterday ai E-mailed for a recommendation for a nebulizer machine because her machine died and I was told to call a particular nurse because she handles the "regular pulmonary patients". This nurse worked with the pulminologist that nearly killed my daughter over and recently began working with her current pulminologist. If this nurse is not working when I call a CF nurse calls back who actually understands a MRSA sputum culture. If this nurse is working when I call she calls back and has no idea what I am talking about. When my daughter turns 18 she will transfer to my CF center. They already agreed to take her. I understand and have experienced your frustration. Take care of yourself.

 

[Printer]

For example, Massacusetts General Hospital is an APPROVED CF CENTER. There are more than 2000 Doctors on staff but only 6 are CF SPECIALISTS. Going to a CF CENTER is not enough. As we know, CF CENTERS don't do "screening sweat tests".

Mad max33, if I wanted to call you a lier I would have done so. I said that something is wrong with your story. Now I am finding just what is wrong. Tell me what CF CENTER that you are going to and I'll help you in seeing the appropiate Doctor.

Bill

 

[madmax33]

Bill. It is a CF Center. If that is the case, (what Dr you see and only so many CF Specialist) It seems it does not matter who they have set me up with right now, until I have there sweat test? Correct? I have been going through the ringer where I live, So getting this far I am lucky. So yes Obviously this is what the directions I Got from the center first (even with the Order I Had from my DR) To find a hosp up here so I would not have to travel so far and then get referred to them if it came out positive. Seems I could have went directly there to begin with. So I did have the screening test first. the Center is UC DAVIS Also this is the Adult center I was set up with.

 

[madmax33]

I am so sorry you are going through this frustration. Must be so hard with a child. Now I guess I understand more how CF centers work. Seems I was not clear at first at what I was trying to find out being new to all of this. When you have never done this, and finally at 59 being told what to do and finally get a referral to a CF Center, I thought that is who you are seeing a CF SPECIALIST. I have a feeling now, Even thought I am set up with there sweat test, It is not a CF Specialist I am seeing??? I am set up for the sweat test there though next Tuesday. then See the Dr on Dec 1st. I did not like that I have to wait that long. So this is interesting as I feel it will be positive, If then I really will not be seeing a correct doctor. I talked to my daughter the other day because she went with me. I wanted to be clear about what this dr said to me as I am overwhelmed. She told me he said there is not a lot of treatment for adults?? Also the fact that he started leaning towards cancer?? As he felt that I really could not have CF because of my age. In the conversation over my history and past, he said it is possible I have the other CF??? So yes I do not think he is a CF Specialist. through all these post here, (And this is the info I was looking for) Who you see seems to matter. The fact that you get to a Cf center does not then mean you will get the proper treatment or diagnose if you are with the wrong dr. I want to ask them how many older adults like over 50 due they see? I felt many they don't see any or the top age there is in the 30s. All what people kept saying is make sure you are at a CF Credible Center. Which I am going to now. Wont know anything though until I get there test. Boy what a journey. My prayers will be with you and your children.

 

[madmax33]

Bill on a other note, The Dr card says Pulmonary/Critical care. After more info here seems that just a CF Center does not mean you get diagnosed you will be seeing a CF Specialist. You may not of called me a liar Bill, but telling me to get me my story straight and wasting your time was not appropriate. I gave the correct information and would have no idea that the Dr you may see does matter. How would I know all this and that is why I reached out on this board. I would assume the Dr's card would say CF specialist?

 

[madmax33]

Gunelle. Sorry you have had a hard road. Now I am getting more info here. I am calling down there and since they set me up for the sweat test , it is next Tuesday I want to see if they will do the full genetic test. (I have a feeling they will not until the sweat test is done) Boy this is frustrating. All the things I was worried about and why I posted here. Hoping even with a sweat test and it may just be me and what I have gone through, (I have in my mind what if it is board line, what if it is even elevated and this Dr says I feel it is something else. My main reason what concerned me was with all my history and the Dr's statement to begin with!! Boy I am just at a loss. Even with the Screen test Up at 90 and my history, I feel that should have been strongly considered , not a visit of a Dr thinking other illness's. I always have felt once a Dr does not believe you have something, No matter what the test show, they still will not agree with it.(I call it the GOD SYNDROME) Will just have to wait. This Dr was very kind. Will know more when I get the test, then sounds like from there, if positive, what I will need to do from there to get proper treatment and who I see.