new, pls help

[cmiller]

Hello,
My brother is 46 and has been sick for years; diagnosed with CF via sweat test yesterday.
He has lost so much weight, has circulation problems, abdominal painand just copious amounts of thick mucus. He has no insurance. He lost his job and also kicked out of National Guard 2 years ago bc he was too sick to work and has been looking for diagnosis since 2006. He is not on any medication and does not as of yet have a doctor to follow up on the CF. He has been to the emergency room multiple times over the last few years and they say they can't help him. He had CT scan that showsmultiple cysts in his liver, blocking biliary ducts but rest of abdomen looked okay on CT scan.
My concern, he says he feels his body is shutting down. He can't think straight, has not been able to pass stool for over a week. He is too weak, tired to get out of bed. He is eating but not much and doesn't seem like he is able to get nutrients out of his food.
It is 3 months before CF specialist will see him. I am not sure he will make it that long.
If I take him to ER again, what do I ask for? Is one sweat test enough to determine you have CF and start some sort of treatment? I am not even sure if there would be any medicationavailable to help him.
Thank you for any ideas/advice.
Best,
Cheri

 

[cmiller]

Hello,
My brother is 46 and has been sick for years; diagnosed with CF via sweat test yesterday.
He has lost so much weight, has circulation problems, abdominal painand just copious amounts of thick mucus. He has no insurance. He lost his job and also kicked out of National Guard 2 years ago bc he was too sick to work and has been looking for diagnosis since 2006. He is not on any medication and does not as of yet have a doctor to follow up on the CF. He has been to the emergency room multiple times over the last few years and they say they can't help him. He had CT scan that showsmultiple cysts in his liver, blocking biliary ducts but rest of abdomen looked okay on CT scan.
My concern, he says he feels his body is shutting down. He can't think straight, has not been able to pass stool for over a week. He is too weak, tired to get out of bed. He is eating but not much and doesn't seem like he is able to get nutrients out of his food.
It is 3 months before CF specialist will see him. I am not sure he will make it that long.
If I take him to ER again, what do I ask for? Is one sweat test enough to determine you have CF and start some sort of treatment? I am not even sure if there would be any medicationavailable to help him.
Thank you for any ideas/advice.
Best,
Cheri

 

[beleache]

Hi Cheri,
I am sorry that your brother (& you) are going through so much. He needs to get insurance asap !
Yes, one sweat test can be enough to diagnose cf.
It sounds to me like he may have a blockage, & if I were him I would take something to help w/ that, like maybe Miralax or something that he thinks will help him go to the bathroom.
Has he gone to a CF center ??. thats what I would do. They should be able to help him. Is he on disability ? If he lost his job, maybe he should try getting disability.
Bottom line, he needs to get ins & go to a cf center. I hope he gets the help he needs soon.
Take care, joni

 

[beleache]

Hi Cheri,
I am sorry that your brother (& you) are going through so much. He needs to get insurance asap !
Yes, one sweat test can be enough to diagnose cf.
It sounds to me like he may have a blockage, & if I were him I would take something to help w/ that, like maybe Miralax or something that he thinks will help him go to the bathroom.
Has he gone to a CF center ??. thats what I would do. They should be able to help him. Is he on disability ? If he lost his job, maybe he should try getting disability.
Bottom line, he needs to get ins & go to a cf center. I hope he gets the help he needs soon.
Take care, joni

 

[Printer]

I was dx at age 47. Finally he is on the road to good health. He MUST get to an APPROVED CF CLINIC and be cared for by a CF SPECIALIST.

Only go to an ER at a hospital that has a APPROVED CF CLINIC. Tell them that he has CF and is having a CF FLARE.

Bill

 

[Printer]

I was dx at age 47. Finally he is on the road to good health. He MUST get to an APPROVED CF CLINIC and be cared for by a CF SPECIALIST.

Only go to an ER at a hospital that has a APPROVED CF CLINIC. Tell them that he has CF and is having a CF FLARE.

Bill

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cmiller</b></i> It is 3 months before CF specialist will see him. </end quote>

why is it 3 months before the CF doc will see him? where do you live?

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cmiller</b></i> It is 3 months before CF specialist will see him. </end quote>

why is it 3 months before the CF doc will see him? where do you live?

 

[Havoc]

I would look for the nearest CF center (http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/) and crash the ER there.

 

[Havoc]

I would look for the nearest CF center (http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/) and crash the ER there.

 

[bkc3]

If he was chaptered out of the gaurd on medical, VA could maybe help. The sweat test is enough for diagnosis, next would be genetic testing. It sounds like you urgently need an accredited cf center. The blockage likely needs a gi specialists attention immediately.

 

[bkc3]

If he was chaptered out of the gaurd on medical, VA could maybe help. The sweat test is enough for diagnosis, next would be genetic testing. It sounds like you urgently need an accredited cf center. The blockage likely needs a gi specialists attention immediately.

 

[Aboveallislove]

I am so sorry. You must be so scared and he must be so exhausted. I would suggest you take him to the closest ER with an accreditted ADULT CF Center. If you post your City, I will try to help you find, or see links above. I think he needs to be admitted and "cleaned out"--he likely has a blockage intestinally. And likely needs to get his lungs cleared as much as possible. While waiting in the ER as to talk to a Cystic Fibrosis social worker. Tell the social worker he does not have insurance and you need to get him on the State's CF insurance as soon as possible. (Your state might not have that but many do.) If he is only going to a VA hospital etc. b/c of his status there/no insurance, I suggest you ignore--go to the ER with Adult CF Center as noted above b/c they cannot release until he is medically stable and must treat. I'm rather new to the CF stuff, so I'm not sure what else to ask, but I think I would say he needs to be admitted and have a CF doctor see him in the hospital and start a plan for lungs and GI. Please write back so we can try to help more. Praying for him and you.

 

[Aboveallislove]

I am so sorry. You must be so scared and he must be so exhausted. I would suggest you take him to the closest ER with an accreditted ADULT CF Center. If you post your City, I will try to help you find, or see links above. I think he needs to be admitted and "cleaned out"--he likely has a blockage intestinally. And likely needs to get his lungs cleared as much as possible. While waiting in the ER as to talk to a Cystic Fibrosis social worker. Tell the social worker he does not have insurance and you need to get him on the State's CF insurance as soon as possible. (Your state might not have that but many do.) If he is only going to a VA hospital etc. b/c of his status there/no insurance, I suggest you ignore--go to the ER with Adult CF Center as noted above b/c they cannot release until he is medically stable and must treat. I'm rather new to the CF stuff, so I'm not sure what else to ask, but I think I would say he needs to be admitted and have a CF doctor see him in the hospital and start a plan for lungs and GI. Please write back so we can try to help more. Praying for him and you.

 

[JustDucky]

I agree that he should go to an ER that has a CF specialist on board. He sounds like he needs a good cleanout, lung wise as well as bowel. He could easily have an obstruction, which is an emergency, please make sure he gets care ASAP. As Aboveallislove said, once hospitalized, the social worker can help with getting insurance. Since he has no job, he has no income, he should at least qualify for state aid. The social worker will help with the application process. Hopefully while there, he will be put on meds that will help him feel better and help all of his systems. Most likely, several specialists will get involved..
I would not wait 3 months, by going to the ER, they have to see him once he is admitted. He certainly sounds like he needs to be seen urgently and not 3 months later.
I too was a late dx at 33, I am now 40....all of this was very overwhelming to me, as I am sure it is for your brother. This is a life changing diagnosis to put it mildly..

Please know I am keeping you guys in my thoughts and prayers, let us know how everything turns out.

Jenn 40 wCF

 

[JustDucky]

I agree that he should go to an ER that has a CF specialist on board. He sounds like he needs a good cleanout, lung wise as well as bowel. He could easily have an obstruction, which is an emergency, please make sure he gets care ASAP. As Aboveallislove said, once hospitalized, the social worker can help with getting insurance. Since he has no job, he has no income, he should at least qualify for state aid. The social worker will help with the application process. Hopefully while there, he will be put on meds that will help him feel better and help all of his systems. Most likely, several specialists will get involved..
I would not wait 3 months, by going to the ER, they have to see him once he is admitted. He certainly sounds like he needs to be seen urgently and not 3 months later.
I too was a late dx at 33, I am now 40....all of this was very overwhelming to me, as I am sure it is for your brother. This is a life changing diagnosis to put it mildly..

Please know I am keeping you guys in my thoughts and prayers, let us know how everything turns out.

Jenn 40 wCF

 

[Aboveallislove]

Been thinkng more and wanted to reiterate that I think you need to go to ER ASAP. People with CF can have a blockage called IDOS which can be very dangerous. And many ER doctors are not familiar--we went and ER doctor was ready to release until they check with CF doctor who said to admit. So don't let them just give a 'script for a laxative and let him go. They need to do an Xray, possibly other tests AND consult with CF doctor to determine if constipation or IDOS (intestinal distal obstructive syndrome), the later of which requires a specific protocal, in hospital, which would be good though b/c I think as Jenn said that his lungs need a clean-out. CFers call it a "tune up" where they do 2 weeks (at minimum) IV antibiotics. And if he is admitted they'll have to start him with all the appropriate care for someone with Cystic Fibrosis. Also, as Jenn noted in the hospital the social worker will help with paper work--i'd ask for a social worker from CF clinic, though, as some states have very specific "insurance" for those with cystic fibrosis that other social workers might not know. She should be able to help you get all set up to get all the medical equipment and medicines he'll need on discharge too. Please write back if you can--your dear brother is heavy on my mind.

 

[Aboveallislove]

Been thinkng more and wanted to reiterate that I think you need to go to ER ASAP. People with CF can have a blockage called IDOS which can be very dangerous. And many ER doctors are not familiar--we went and ER doctor was ready to release until they check with CF doctor who said to admit. So don't let them just give a 'script for a laxative and let him go. They need to do an Xray, possibly other tests AND consult with CF doctor to determine if constipation or IDOS (intestinal distal obstructive syndrome), the later of which requires a specific protocal, in hospital, which would be good though b/c I think as Jenn said that his lungs need a clean-out. CFers call it a "tune up" where they do 2 weeks (at minimum) IV antibiotics. And if he is admitted they'll have to start him with all the appropriate care for someone with Cystic Fibrosis. Also, as Jenn noted in the hospital the social worker will help with paper work--i'd ask for a social worker from CF clinic, though, as some states have very specific "insurance" for those with cystic fibrosis that other social workers might not know. She should be able to help you get all set up to get all the medical equipment and medicines he'll need on discharge too. Please write back if you can--your dear brother is heavy on my mind.

 

[Incomudrox]

This is insane! Is this an accredited center??? It can't be. If it is I fear for your brothers life! If this happened at my clinic (and it would NOT happen) he'd be in patient right now, insurance or NOT! My clinic will see anyone and treat them insurance or no insurance. Further more waiting 3 months is asking for a death sentence! If I call right now (i have my docs cell) and say I don't feel good, he'd see my in clinic tomorrow morning no questions asked. This BLOWS my mind.

 

[Incomudrox]

This is insane! Is this an accredited center??? It can't be. If it is I fear for your brothers life! If this happened at my clinic (and it would NOT happen) he'd be in patient right now, insurance or NOT! My clinic will see anyone and treat them insurance or no insurance. Further more waiting 3 months is asking for a death sentence! If I call right now (i have my docs cell) and say I don't feel good, he'd see my in clinic tomorrow morning no questions asked. This BLOWS my mind.