CF Questions

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>Hi, I have some questions <img src="i/expressions/face-icon-small-confused.gif" border="0"> My brother was diagnosed w/cf about 6 months ago. He is 35 years old. All of the research I can find talks about lung problems. While he has had pneumonia a couple times a year for the past couple years, he doesn't seem to have "lung problems", he has pancreatitis...bad. They just put a j tube in<img src="i/expressions/face-icon-small-frown.gif" border="0"> I found an adult cf clinic in the state where my bro lives and he says his doc told him he didn't need to be in a cf clinic<img src="i/expressions/face-icon-small-confused.gif" border="0"> are there different "kinds" of cf? Do some only have digestion problems? hope someone can tell me something.... God bless, pam</FONT>

 

[AbsintheSorrow]

Yes depending on the mutations people have, they can have a mild case, just respiratory, just digestive, or a severe case, etc etc. Depending on the different specific mutations, everyone's CF can be different. However, if he has bad GI symptoms, he should be at a CF clinic, whether or not he's void of respiratory symptoms. Whatever doctor told him otherwise sounds like an idiot.

 

[anonymous]

I agree with Emily....if your brother was diagnosed with CF...no matter what symptoms he is showing...he should go to a CF clinic. Each person with CF is different because of the different mutations. I'm glad your brother isnt showing lung problems...thats a plus. I hope he gets to feeling better!
Dea 31 w/CF

 

[anonymous]

I would have to agree w/ the previous posts. He should go to the CF Clinic. They will just be so much more knowledgeable than his regular Dr because this is their specialty. There are dieticians there, and others that can help him & give him feedback on what others w/ his particular condition have done.
He can also post here if he is just curious if others have experienced what he is experiencing, how they treated it, etc.
<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>Thank you all for the quick reply.....I have been confused as to why the Doc would tell him he doesn't need a cf clinic.I think my brother needs to insist, but he says the doc refused to send his med records<img src="i/expressions/face-icon-small-shocked.gif" border="0">I can't imagine he could do that legally<img src="i/expressions/face-icon-small-confused.gif" border="0">I would love to get him posting here, but his computer is on the blink<img src="i/expressions/face-icon-small-sad.gif" border="0">Maybe he will get it fixed or get a new one soon.thanks again and God bless you all,<img src="i/expressions/heart.gif" border="0">pam</FONT>

 

[anonymous]

I think its illegal for a doctor to refuse to send medical records to other doctors upon a patients request. The new HIPPA law states your medical records are your own property....thats why you have to sign so many forms and releases when you go to dr appts...Did you mean a referal to go to a cf clinic?

Also pnuemonia (sp?) a few times a year can be damaging to his lungs and can be very very serious. Whether or not he thinks he doesn't have lung involvement or even if thats what the quack doctor told him they are wrong. Pnuemonia a few times a year sounds like lung invovlement to me.

Sorry to say his doctor now is a quack but anyone saying their patients don't need a cf clinic and won't release medical records is a quack. Sounds like he wants to keep your brother so he can get money....who knows. but i still say he is a quack and for saying he doesn't need a cf center can be considered hindering/hurting his patients health. I'm not kidding. Your brother maybe fine now but if he doesn't see a cf center and gets sick later on his doc now may not know whats best for your brother and that may hurt his health even more and can result in death. Don't mean to scare you but i have heard of it happening....to a cf person i know and is on deaths door at the moment.

If his doctor won't give him a referal tell your brother to call the cf center on his own and explain the situation. They should take him if they need a referal get your brother to go to another doctor until he can get one. They usually take patients without referals but it may depend on how big the center is. But if its a case of a doctor not willing to give a referal that maybe an exception.

Keep talking to your brother about seeing a CF center it really is the best thing for him. Its not just another doctor office with a special name. They specialize in cf, know what meds work best for it, have a team of pulmonologist (sp?) dieticians and nurses who also specialize in cf. They are most up to date on new meds and treatments to best treat cf. I personally think if it weren't for the CF centers around the world that cf would still be considered a childhood disease.

OK thats my two cents.
Amanda

 

[EmilysMom]

Amanda's two cents should be worth at least $20!!!! She's right...I believe it is illegal to withhold medical records.
He should be seen at a CF clinic whether he has lung involvement or not (it does sound like he has lung involvemen though if he has had trouble with pneumonia).
They are the doctors who are up on the newest meds and the correct way to treat all CF patients no matter what involvement they have and they keep all of our CF people at their best health.
Insist he see someone at a CF Center. (and by the way) he's lucky to have you as a sister!

 

[anonymous]

OH and another thing I read that (on a different post) that your brother has sinus problems. I do too just had my 5th sinus surgery last week. Several Cfers have sinus problems some worse than others. I even heard of a girl who had a face peel, where they peeled her face of the skull to cut into the sinus cavities to do some extensive repear and things like that, sounds scary to me.

I also was informed that referals to other doctors and specialists are usually wanted by insurance companies and private doctor offices where they are crowded and need to know who needs them more than others.

Amanda

 

[anonymous]

Legally, medical records are the property of the physician. However, the physician is legally obligated to provide you a copy of your records at your request. Some physicians may require a written request as well as payment for the time it takes for his/her staff to photocopy the chart. The payment shouldn't be more than $0.20 per page. Each state should have a max charge/page for medical records. Also, if the patient is on a government insurance plan (ie medicaid), they do not have to pay, although, that may be decided state to state.

 

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>I spoke to my brother tonight, and his wife Angela.  I passed along the info that yall gave me and asked Angela to come here tomorrow at work. She said she would check it out.  I also got Kevin's mutation....it is   1 Delta F 508. and he has been on viacase (?) enzymes this whole time. I think he has been having this pancreas thing for about 8 or 9 months.  They have never tried a different enzyme.I hope Kevin will get in the CF clinic.  He hasn't been able to work in about 2 years and although he did just get ss disability, Angela has been taking care of the family single-handedly for a long time<img src="i/expressions/face-icon-small-sad.gif" border="0"> God bless her for all that she has and will endure.I am sure Angela will have her own questions when she comes here.Thanks for your help.God bless,<img src="i/expressions/heart.gif" border="0">pam</FONT>

 

[NoDayButToday]

What are his mutations? It takes 2 mutations to result in CF. If one is Delta F 508, what's the other one? Just curious. I hope your brother gets all the help he needs, and RUNS from that doctor- he sounds like he's not all that knowledgeable about CF, especially adult diagnoses. Best of luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[redeemedchild]

<P><FONT face="Comic Sans MS" color=#0000ff>2 Mutations????I don't know????</FONT></P>

 

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>sorry so many questions guys...but here's another one.....what is cfrd?God bless,<img src="i/expressions/heart.gif" border="0">pam</FONT>

 

[anonymous]

It is CF Related Diabetes. Somewhat similiar to type 2 diabetes, but a lot of times treated a little differently than type 2 (w/ insulin rather than pills). It's a little complicated to explain how it's same/different than type 2, but the Docs at the CF Clinic should have pamphlets & information on it.

Just an FYI...I have two Delta F508 mutations, he may also if there wasn't anything else identified.

 

[anonymous]

Where does your brother live Pam? Yes..to have CF a person must carry 2 mutations...otherwise they are just a "carrier" of the disease. I also have 2 copies of the delta F508. My daughter is a carrier-carries 1 copy of the delta F508. Also.....this doctor that your brother is seeing...doesnt sound like a good doc to me....any doctor I have EVER seen is more than willing to share my medical records with another doctor. I hope he will get to a CF clinic soon....Take Care!
Dea

 

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>My brother lives in Kansas...can't think of the name of the town???And yes,  Kevin desperately needs to get in the cf clinic....he just got out of the hospital last week and as of today, he is back in the hospital with pneumonia<img src="i/expressions/face-icon-small-sad.gif" border="0">How the doc could tell him he doesn't need the cf clinic is beyond me<img src="i/expressions/face-icon-small-mad.gif" border="0"></FONT>

 

[anonymous]

I'm sorry to hear that your brother is back in the hospital...we will all be praying for him a speedy recovery!
Dea