My brother, Kevin:(

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>Kevin just got out of the hospital last week, after having a jtube put it and this morning he was hospitalized again...he has pneumonia.  I guess he really does have the lung problems too.I know everyone is different, but will Kevin ever be able to live a somewhat normal life again? I mean, if he gets himself into a cf clinic, will he ever be able to function, like work, go to his son's ballgames?  He has been so sick for so long, his oldest son is 9 and he remembers his dad being somewhat healthy, and he is starting to exibit bahaviour problems, actually he was just put on some kind of medication(?), the younger one is 3...he has never known his Daddy healthy.  Kevin has been so drugged on pain meds for the past couple years...he is like a vegetable sometimes.  Is he always going to be like this now? Is this  the norm for cfers, are all of you on drugs and out of it?I'm sorry, I am just sooo upset right this minute. I can't imagine that my brother will always be this way.pam</FONT>

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>redeemedchild</b></i><br><FONT face="Comic Sans MS" color=#0000ff>Kevin just got out of the hospital last week, after having a jtube put it and this morning he was hospitalized again...he has pneumonia.  I guess he really does have the lung problems too.

I know everyone is different, but will Kevin ever be able to live a somewhat normal life again? I mean, if he gets himself into a cf clinic, will he ever be able to function, like work, go to his son's ballgames?  He has been so sick for so long, his oldest son is 9 and he remembers his dad being somewhat healthy, and he is starting to exibit bahaviour problems, actually he was just put on some kind of medication(?), the younger one is 3...he has never known his Daddy healthy.  Kevin has been so drugged on pain meds for the past couple years...he is like a vegetable sometimes.  Is he always going to be like this now? Is this  the norm for cfers, are all of you on drugs and out of it?

I'm sorry, I am just sooo upset right this minute. I can't imagine that my brother will always be this way.

pam</FONT><hr></blockquote>

I can tell you that the medication CF's are given don't usually make you drowsy or out of it, and we try to live as normal life as we know how to. it can get hard at times. Does Kevin have CF as well as pneumonia? If he does he should have been in a clinic a long time ago.

 

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>Kevin just turned 35 and was diagnosed about 6 months ago with cf.  He has been sick for a long time with chronic migraines, sinusitus and pancreatitis.  He has spent more time in hospital in the past 3 years than out.I am just learning that the pneumonia that keeps coming back, is probably a part of the cf.  His doc told him he didn't need a cf clinic. I have been trying to convince Kevin that it is the only thing that might save his life. I know in my heart that he won't last much longer if he doesn't get in the cf clinic.  All of his life Kevin has had digestive probs and the sinusitis and migraines...wish someone had tested him years ago for cf.  He has in the past 3 years had pneumonia maybe 6 times, and that is getting more frequent. He just had it about 2 months ago, and it is out of the blue, no cold or anything, just wakes up with a high fever and boom,its pneumonia.To make things worse, he lives in Kansas, and the rest of our family lives in Tennessee.  My Mom is there right now visiting and my Dad has given her orders(j/k) that she is not to leave till she gets him into the cf clinic.Kevin is on alot of pain meds and most of the time is incoherrent on the phone.I was assuming that all cf patients are in chronic pain? I guess not. more proof that he has got to get to a clinic.God bless,pam</FONT>

 

[kybert]

if he doesnt get to a proper clinic his health will go down the gurgler. not maybe, IT WILL. i cant understand why he is drugged up on pain killers. that is NOT a regular part of a cf routine. sometimes painkillers are prescribed for periods of time but to have someone permanently drugged to the point they cant speak, definately not! on what basis did they put the g tube in? is he having trouble maintaning weight or putting it on? have they told him to see a dietitian about his weight before having procedures like this? i can only hope for now that he is on a good combo of anti biotics for the pneumonia....

what exactly is this doctor? a lung specialist or a general practitioner?

oh another question. does this doctor have other cf patients?

 

[redeemedchild]

<blockquote>Quote<br><hr><i>Originally posted by: <b>kybert</b></i>if he doesnt get to a proper clinic his health will go down the gurgler. not maybe, IT WILL. i cant understand why he is drugged up on pain killers. that is NOT a regular part of a cf routine. sometimes painkillers are prescribed for periods of time but to have someone permanently drugged to the point they cant speak, definately not! on what basis did they put the g tube in? is he having trouble maintaning weight or putting it on? have they told him to see a dietitian about his weight before having procedures like this? i can only hope for now that he is on a good combo of anti biotics for the pneumonia.... what exactly is this doctor? a lung specialist or a general practitioner? oh another question. does this doctor have other cf patients?<hr></blockquote><FONT face="Comic Sans MS" color=#0000ff>Kevin has had chronic pain for years...the sinus probs, the migraines.supposedly he is on pain meds currently for the pancreatitis. He hasn't had solid foods for about 8 months. He is unable to eat...everything makes him sick. The g/j (?) tube is because of that, he said doc said he needs to not eat too allow his stomach and pancreas to heal, doc said he would probably have the tube for a year!I have no idea what kind of antibiotics he is on. and the doc as far as I know is a gen pract? definately not a cf doc<img src="i/expressions/face-icon-small-disgusted.gif" border="0"></FONT>

 

[anonymous]

I guess what im saying is please make sure he has SPECIALIST to see. Your normal doctor may know about cf , but has not NEAR the knowledge it takes to treat it properly.

You worry about him losing his everyday life if he goes to the clinic but its just the opposite, if he does not go he will lose it. If he goes his health will improve over not going...and he will get sick less often, and feel better.. thus being able to go on with his life easier, just with a little more resposibility towards his health.

Oh and I cant believe he has children... Only about 2% of men with cf can have kids without an operation to correct a problem they have....

 

[anonymous]

Also is he taking enzymes for his digestive problems?
MAN GET THAT MAN TO A SPECIALIST.
A REGULAR DOCTOR CANNOT TREAT HIM.
No matter how good they are they do not have the knowlege to PROPERLY treat him.
My guess is he can feel alot better with the right help than he does now at least. OR at least they can help him from getting worse as fast.

 

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>Kevin has been on enzyme...viacase since he first got the pancreatitis attack.I have read that different enzymes work for different folks? I cannot understand why they have not tried a different one since the one he is on doesn't seem to help?We have been trying to get him to a clinic...He thinks his doc would not have said that he didn't need it, if he did...gggrrrr!I am so frustrated and worried. I am driving up there this next weekend and I am gonna print out stuff from here, especially what you have all said, and hopefully it will convince him to get in the cf clinic regardless of what his doc says.  So if yall wanna write him a note...maybe I will start a thread for that?Thank you all so much for replying.God bless,pam</FONT>

 

[anonymous]

Im not sure where in kansas your brother lives but i went onto cff.org and these are the cf centers listed for kansas..... my opinion is that he really needs to be seen by a specialist or he is just going to keep declining..... Hope this helps and ill keep you both in my prayers..... take care


Melissa, mom to dylan 5 no cf and caleb 3 wcf..


Care Centers

CF Care and Teaching Center Via Christi, St. Francis Campus
Wichita, KS
Appointments: (800) 362-0070
Contact Info: Maria Riva, M.D.


CF Care and Teaching Center Via Christi, St. Francis Campus -- ADULT PROGRAM
Wichita, KS
Appointments: (316) 689-9355
Contact Info: Daniel Doornbos, M.D


University of Kansas Medical Center -- ADULT PROGRAM
Kansas City, KS
Appointments: (913) 588-6044
Contact Info: Drs. S. Stites, G. Perry, and T. Williamson

 

[kybert]

a general practitioner hey? well that explains everythings! a special disease needs specialist treatment.

a. his pain can be fixed, without painkillers. the pain is there because he is NOT being treated.
b. hate to break it to you but he probably doesnt need the tube and had it put in unnecessarily and the procedure would have made his condition worse
c. there are a trillion different enzymes out there and i dont think viacase is one of the best. he might need a different brand or strength. he should also have a fecal fat test done to see if he even needs them or how bad the problem is if its there.
d. this doc probably wants you brothers money, thats why he wants to continue seeing him!!
e. gp's dont bother doing sputum cultures so even if he gets prescibed anti biotics he could be given ones hes resistant too. so they wont do a damn thing.
f. if he still needs painkillers a cf clinic will prescribe appropriate painkillers and give a good pain management regime. 'knocking' someone out with drugs isnt the answer. no wonder he throws up when he eats food!
g. does he even have pancreatitis???? was this an educated guess by the doc or is there solid evidence so suggest he has it? or is it just a stomach ache from inappropriate enzyme and painkiller use?

oh boy i cant stress enough the importance of seeing a specialist. my old gp and the one i see now are good, but i would never put my cf in their hands. and theyd refuse to let me do that too. they know i need a specialist and they ALWAYS tell me to see him when things are beyond theirs and my control. i really acnt understand why hes said for him not to see a cf clinic. this doc is taking your brother for a ride, probably an expensive one at that!

is this the same doc who diagnosed him with cf? hmmmmmmmmmmmmmmmmmm.......

 

[Diane]

Hi Pam,
None of us can stress enough how seriously inportant it is for him to go to a cf doctor!! A regular doctor is NOT sufficient to treat cf. Its like asking a dentist to fix a broken foot. a person who has heart problems goes to a heart specialist, someone with foot problems goes to a podiatrist, someone who has vision problems goes to an opthomologist, A PERSON WITH CF MUST GO TO A CF DOCTOR. He may be able to get himself out of the woods if he gets the right treatment. Further complications can be avoided, but he MUST go to a cf doctor. The sooner the better.... urge him to NOT delay getting to a cf doctor as fast as he can get there. Ill keep him and your family in my prayers<img src="i/expressions/face-icon-small-smile.gif" border="0"> Good luck

P.s. if you have to ....make the appointment for him and drag him there
~Diane 39 cf / diabetes / b.cepacia

 

[anonymous]

Hey Pam,

I can tell you are a really loving sister and I want to applaud you and your families efforts in trying to get him to see a cf doctor. It maybe hard because from what i read if he is out of it because of pain meds he may not be thinking logically. You may just have to get his wife or mom to set up an appointment with a good cf center and just tell him his doctor wants him to run some tests and he just forgot because of the pain meds. Tricking him maybe the last resort. Its easy to belive things and not understand things well when on pain meds so of course he is going to believe every word his doctor is going to say even if half the world disagrees with his doc. But before you try tricking him try everything else in the world.

Try to get it in his head that he won't be able to see his kids grow up if he doesn't get the proper care and the doctor he is seeing now can not give it to him. I hate to say it but it sounds like the doctor he has now is shortening his life just to make a few extra bucks....p.s. docs get bonuses for giving patients certain meds so they push them even if they don't need it and some docs do this because they are greedy and don't care about patients anymore.

Also I have a few friends in Kansas with cf. One doesn't go to a clinic there, i think he didn't like them so he goes to Missouri and he is listed for a transplant and goes to the transplant clinic in Dallas TX and they also have a great cf clinic there. I will ask the others what clinic they go to, although i do know another one also goes to the transplant center in dallas. Depending on where your brother lives in kansas dallas maybe close ennough to go to, i can speak from experience their cf center is wonderful and its great to know that the transplant team there also knows so much about cf too if it is ever needed.

I can't stress to you enough and niether can anyone else on this site how important it is to get him to a good cf center. any cf center is better than the doc he has now.<img src="i/expressions/camera.gif" border="0"><img src="i/expressions/clock.gif" border="0"><img src="i/expressions/face-icon-small-confused.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"><img src="i/expressions/face-icon-small-disgusted.gif" border="0"><img src="i/expressions/face-icon-small-blush.gif" border="0"><img src="i/expressions/devil.gif" border="0">

 

[anonymous]

i just posted and i have no idea how those smilies got there. sorry bout that

 

[anonymous]

Pam,
I live in Kansas and would love to help out if there is anything I can do. I may be able to shed some light on the CF Clinics here too.
Please send me an email if you'd like me to help w/ anything. Please put something about CF in the subject line so I don't delete the email.
Thanks
email address is: Jtrey1@aol.com

 

[anonymous]

I really hope your brother gets the treatment he needs Pam. I wish you and all your family luck with helping Kevin get what he needs and deserves <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>Kevin got out of the hospital today and has to go to another one tomorrow to have the Gtube replaced......His wife, Angela came here to the board and printed out the stuff you guys have said and read it, and today she and kevin filled out and submitted a formal request to have his medical records sent to the cf clinic...Kansas Universty Hospital...I think.I spoke to Kevin today and he says the doc that told him he didn't need to go to the cf clinic IS a doc at the cf clinic too...whats that about????<img src="i/expressions/face-icon-small-confused.gif" border="0">Any way, I will let yall know how it goes from here.Thanks anf God bless,<img src="i/expressions/heart.gif" border="0">pam</FONT>

 

[NoDayButToday]

Can I ask why he needs to have his feeding tube replaced? Was there a problem with the tube or was it a routine sort of thing? Another curiousity question on my part. <img src="i/expressions/face-icon-small-happy.gif" border="0">
I'm so glad he and his wife are filling out the forms to obtain medical records. They may also want to get a copy for themselves to keep at home, just to have a sense of control. As for what your brother said about the doctor, the only thing I can think of is that the doctor is affiliated with the same hospital as a CF clinic? Good luck- I'm glad the ball is now rolling

 

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>The tube is faulty. It was just put in last week and is not functioning properly?</FONT>

 

[kybert]

if i were your brother i would not let any of them touch me until i saw a cf specialist. id be getting the g tube REMOVED not replaced.

 

[NoDayButToday]

That's very unusual about his feeding tube. At least in my experience, they have become very good at putting them in and in fact, the surgery is done lapricospically (sp?) and is sometimes a outpatient procedure at my hospital. Occasionally the tube needs to be replaced; but this is just a routine thing and is done at the doctors office. I've had my tube for about 5 months and have had no problems except for the irritation from stomach acid as the stoma was healing. I'd be hesistant to send him back in to have it replaced. Could they possibly use some other form of supplemental nutrition until he gets to a more knowledgable doctor, like nasal gastric feedings or through a PICC-line? Just throwing ideas out there since I know how unfun surgery is!