If someone could please help...

[anonymous]

I hope you don't mind me posting. I am the sister of a 28 year old CF patient. He is now living with me and I have started working out of my home (I own my own business) to care for him. I have had countless conversations with his doctors, and, I know this sounds bad, but they just keep prescribing antibiotics, and pain medications (definately not helping). And he's taken a turn for the worse. Let me explain what is going on, and hopefully some or one of you could please help make some alternative suggestions. He is hospitalized more than he is home, and he used to be very active so he is very depressed. I want so badly to help.

His PFTs normally have been in the high 40's (he is on oxygen at night). Since this recent hospitalization, his PFT's are now 35ish, and he's still in the hospital now. His doctor's are saying his lung's are "clear", and they don't know why they are so low (after cat scan's, sputum cultures, chest xray's)...frustrating.

He does have CF related diabetes, and is currently on injectible insulin.
Psedumonous (sp?)
and MRSA (which he contracted during a hospital stay a year ago). MRSA flares up only occasionally.

His is almost immune now to Cipro, so they have been using an antibiotic that starts with a "V", I will ask and post that later. I know it is only administered through a pic line because of it's potency and potental, as the dr. put it, to "blow veins".

Currently, he is only taking prescribed vitamins/medications. After reading some of your posts, I can not help but think there may be some suppliments that could possibly improve his condition, or at least prolong his time at home between hospital stays. PLEASE HELP!!! My brother is very important to me and anything you can do to help me would be great. Thank all of you in advance for your time.

 

[anonymous]

I hope you don't mind me posting. I am the sister of a 28 year old CF patient. He is now living with me and I have started working out of my home (I own my own business) to care for him. I have had countless conversations with his doctors, and, I know this sounds bad, but they just keep prescribing antibiotics, and pain medications (definately not helping). And he's taken a turn for the worse. Let me explain what is going on, and hopefully some or one of you could please help make some alternative suggestions. He is hospitalized more than he is home, and he used to be very active so he is very depressed. I want so badly to help.

His PFTs normally have been in the high 40's (he is on oxygen at night). Since this recent hospitalization, his PFT's are now 35ish, and he's still in the hospital now. His doctor's are saying his lung's are "clear", and they don't know why they are so low (after cat scan's, sputum cultures, chest xray's)...frustrating.

He does have CF related diabetes, and is currently on injectible insulin.
Psedumonous (sp?)
and MRSA (which he contracted during a hospital stay a year ago). MRSA flares up only occasionally.

His is almost immune now to Cipro, so they have been using an antibiotic that starts with a "V", I will ask and post that later. I know it is only administered through a pic line because of it's potency and potental, as the dr. put it, to "blow veins".

Currently, he is only taking prescribed vitamins/medications. After reading some of your posts, I can not help but think there may be some suppliments that could possibly improve his condition, or at least prolong his time at home between hospital stays. PLEASE HELP!!! My brother is very important to me and anything you can do to help me would be great. Thank all of you in advance for your time.

 

[Jane]

Of course we don't mind you posting...we welcome it! That's what this forum is for. I've only been here for three weeks and I feel like we're family.

The medicine you mentioned is probably vancomycin. It is strong and can cause irritation for the veins, but its pretty common for staph. My son just finished a 3 week course.

Your brother is so very fortunate to have you help with his care. Everyone needs an advocate and a support. It is so frustrating when their health gets worse, but no one can explain why. I'm sure there is someone who has some advice here.

Best wishes.

 

[Jane]

Of course we don't mind you posting...we welcome it! That's what this forum is for. I've only been here for three weeks and I feel like we're family.

The medicine you mentioned is probably vancomycin. It is strong and can cause irritation for the veins, but its pretty common for staph. My son just finished a 3 week course.

Your brother is so very fortunate to have you help with his care. Everyone needs an advocate and a support. It is so frustrating when their health gets worse, but no one can explain why. I'm sure there is someone who has some advice here.

Best wishes.

 

[JazzysMom]

There is a possibility that the doctor is missing something. There is a possibility that someone here might have some insight that could help. Sadly there is the possibility that his CF is progressing & there isnt much more to do to get him any better. This is something that needs to really be addressed with the doctors. I would suggest trying to find alternative methods & present them to the physician! Good Luck!

 

[JazzysMom]

There is a possibility that the doctor is missing something. There is a possibility that someone here might have some insight that could help. Sadly there is the possibility that his CF is progressing & there isnt much more to do to get him any better. This is something that needs to really be addressed with the doctors. I would suggest trying to find alternative methods & present them to the physician! Good Luck!

 

[Kimmiek]

Ok, just figured out how to join. Thanks to both of you for your replies. Yes, just spoke to him it is vancomycin.
I know his CF is progressing, and I have talked to his doctors about it. They just seem to want to treat "what ever comes up" when it comes up, but don't really offer to much in the way of boosting his immune system or any other types of vitamin suppliments, etc. which may help.

I know about a year or two ago (my brother used to be a personal trainer before getting so sick). He told me he used to take HGH injections, and felt 100% better, only had one hospitalization during that year, and his pfts were higher. He eventually had to stop taking it as it costs about 200 per month and was too expensive for him. I have done some research on the web about HGH and CF patients, and it seems that in other countries, they use HGH as a part of therapy. His current dr.'s have said they have not done much research in the US about HGH and CF.

Also, I have a homeopathic pharmacist I have been speaking with regarding an amino acid suppliment.

My brother was very into health and fitness, and has given me some insight about some of the things he used to do, but has not been able to afford. I am willing to do whatever it takes to get him feeling at least a little better longer. We are currently searching for a better primary care dr. now, who will work better with his CF clinic.

I also read something on here about "oregano oil" in addition to his Advair inhailer and regular nebbs. Does it work well??

 

[Kimmiek]

Ok, just figured out how to join. Thanks to both of you for your replies. Yes, just spoke to him it is vancomycin.
I know his CF is progressing, and I have talked to his doctors about it. They just seem to want to treat "what ever comes up" when it comes up, but don't really offer to much in the way of boosting his immune system or any other types of vitamin suppliments, etc. which may help.

I know about a year or two ago (my brother used to be a personal trainer before getting so sick). He told me he used to take HGH injections, and felt 100% better, only had one hospitalization during that year, and his pfts were higher. He eventually had to stop taking it as it costs about 200 per month and was too expensive for him. I have done some research on the web about HGH and CF patients, and it seems that in other countries, they use HGH as a part of therapy. His current dr.'s have said they have not done much research in the US about HGH and CF.

Also, I have a homeopathic pharmacist I have been speaking with regarding an amino acid suppliment.

My brother was very into health and fitness, and has given me some insight about some of the things he used to do, but has not been able to afford. I am willing to do whatever it takes to get him feeling at least a little better longer. We are currently searching for a better primary care dr. now, who will work better with his CF clinic.

I also read something on here about "oregano oil" in addition to his Advair inhailer and regular nebbs. Does it work well??

 

[Scarlett81]

It's so nice to see a fellow cfer with such a caring sister. It does you credit.

And, of course you can come here any time at all. The site isn't just for patients, it's for family and support too.

There's many people here that have used nutritional/supplements for their CF. I'm sure some of them could help you.

You also mentioned that he's been depressed. Could that be affecting his health too? I know for myself, I struggle with post traumatic stress disorder, and initially when I was going through it and diagnosed, my physical health was very bad. Sometimes when the mind is in despair, the body follows. My pft numbers plummeted, and I was tired every minute of my life.

Regardless of emotional problems, it's so common for people with chronic illness to have depression. Maybe, like I did, he may have to talk to someone proffesionally? A grief counselor, or therapist?

It probably could only help. Anytime we "nurture" ourselves, especially emotionally, it aids physical health. It's certaintly not the reason he's sick. But, it may be a factor?

I hope you can find some help here.

 

[Scarlett81]

It's so nice to see a fellow cfer with such a caring sister. It does you credit.

And, of course you can come here any time at all. The site isn't just for patients, it's for family and support too.

There's many people here that have used nutritional/supplements for their CF. I'm sure some of them could help you.

You also mentioned that he's been depressed. Could that be affecting his health too? I know for myself, I struggle with post traumatic stress disorder, and initially when I was going through it and diagnosed, my physical health was very bad. Sometimes when the mind is in despair, the body follows. My pft numbers plummeted, and I was tired every minute of my life.

Regardless of emotional problems, it's so common for people with chronic illness to have depression. Maybe, like I did, he may have to talk to someone proffesionally? A grief counselor, or therapist?

It probably could only help. Anytime we "nurture" ourselves, especially emotionally, it aids physical health. It's certaintly not the reason he's sick. But, it may be a factor?

I hope you can find some help here.

 

[anonymous]

Christian,
You mentioned post traumatic stress disorder and that struck a nerve with me. My sons both had g-tubes placed two years ago and were in the hospital for a month (for different issues and nonsense). Both are treated for depression and anxiety. My older son who is almost 15 hasn't really "shaken it off" and has been struggling with school and social stuff ever since. I'm wondering if this could be PTSD also.

I'm curious. How is that diagnosed? How does it differ from regular depression? I'm going to bring it up to my son's counselor.

Probably everyone here has had depression at times, has anyone else had PTSD diagnosed? Interesting.

Jane

 

[anonymous]

Christian,
You mentioned post traumatic stress disorder and that struck a nerve with me. My sons both had g-tubes placed two years ago and were in the hospital for a month (for different issues and nonsense). Both are treated for depression and anxiety. My older son who is almost 15 hasn't really "shaken it off" and has been struggling with school and social stuff ever since. I'm wondering if this could be PTSD also.

I'm curious. How is that diagnosed? How does it differ from regular depression? I'm going to bring it up to my son's counselor.

Probably everyone here has had depression at times, has anyone else had PTSD diagnosed? Interesting.

Jane

 

[Kimmiek]

He is on medication for depression now. He has not been to a counselor consistently. We have talked about finding one though.

I think what depresses him most, is he used to be very fit, athletic and a personal trainer. Now, due to all of the hospital stays, prednazone (sp) etc. He is about 40lbs overweight. He tries to go to the gym, but goes once or twice and is back in the hospital. I know her really doesn't like the way he looks. And to add to it, some of the medications have given him very bad acne on his back. I don't know if he will ever be able to get back to that kind of life, but there is hope.

I have a 4 year old daughter, being around her seems to have boosted his spirits a bit too. She keeps him on his toes!! She loves her uncle very much.

I am going to try to go buy him a laptop and bring it to the hospital so he can visit this site too. All of you seem like such a great group and are very supportive of each other, maybe if he could chat with all of you, it may help. I guess it always helps to know you are not the only one, and he doesn't know many adults with CF.

 

[Kimmiek]

He is on medication for depression now. He has not been to a counselor consistently. We have talked about finding one though.

I think what depresses him most, is he used to be very fit, athletic and a personal trainer. Now, due to all of the hospital stays, prednazone (sp) etc. He is about 40lbs overweight. He tries to go to the gym, but goes once or twice and is back in the hospital. I know her really doesn't like the way he looks. And to add to it, some of the medications have given him very bad acne on his back. I don't know if he will ever be able to get back to that kind of life, but there is hope.

I have a 4 year old daughter, being around her seems to have boosted his spirits a bit too. She keeps him on his toes!! She loves her uncle very much.

I am going to try to go buy him a laptop and bring it to the hospital so he can visit this site too. All of you seem like such a great group and are very supportive of each other, maybe if he could chat with all of you, it may help. I guess it always helps to know you are not the only one, and he doesn't know many adults with CF.

 

[CowTown]

Hello, If you go under the main section of this site and see there is another category called Supplements. Look in there, there is a ton of information on oregano oil, and a bunch of things people take to help maintain and better their health. Good luck and I'm sure you will find something here at this site to help and give you both seom hope.

 

[CowTown]

Hello, If you go under the main section of this site and see there is another category called Supplements. Look in there, there is a ton of information on oregano oil, and a bunch of things people take to help maintain and better their health. Good luck and I'm sure you will find something here at this site to help and give you both seom hope.

 

[Landy]

Is your brother on disability or a state aid program of any type to help offset costs of meds?
If not, let us know & possibly we can point you in the right direction to help you to get some aid for him. If we knew what state you were from, surely there are others here from that State that could inform you of state sponsored programs.
Also, not to add to your issues, but has transplant ever been mentioned to him? It may be a little premature now for it, but it's something to keep in the back of your minds & something to check into to see if insurance would cover and also to see if you would need to fund raise at all, etc.
As far as meds go, is he taking Zithromax at all? That may help to boost things for him. I am not on it personally but know of others on this site that take it every other day or so. Also, I'm assuming he is on some inhaled meds?
As far as supplements go, SeanDavis may be able to help there, I'm sure he will respond to this when he sees it.
As others have mentioned, it's great that he has you as an advocate for him-hang in there<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Landy]

Is your brother on disability or a state aid program of any type to help offset costs of meds?
If not, let us know & possibly we can point you in the right direction to help you to get some aid for him. If we knew what state you were from, surely there are others here from that State that could inform you of state sponsored programs.
Also, not to add to your issues, but has transplant ever been mentioned to him? It may be a little premature now for it, but it's something to keep in the back of your minds & something to check into to see if insurance would cover and also to see if you would need to fund raise at all, etc.
As far as meds go, is he taking Zithromax at all? That may help to boost things for him. I am not on it personally but know of others on this site that take it every other day or so. Also, I'm assuming he is on some inhaled meds?
As far as supplements go, SeanDavis may be able to help there, I'm sure he will respond to this when he sees it.
As others have mentioned, it's great that he has you as an advocate for him-hang in there<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I don't know if this has been mentioned or if anyone has brought this up to you - as far as doctors go - but it is possible that if your brother has CFRD and his blood sugars are not under good control that they could be causing some problems too.
I had a CF endocrinologist explain to me that for a CF patient the level of your B.S.s needs to be more controlled than that of a normal "healthy" diabetes patient. He said that our bodies react to high blood sugar as a sign of illness and then they try to "heal" themselves (not medical terms in case ya didn't know) and this in turn can cause inflammation in the lungs. If you blood sugars are under control and your Hemoglobin A1C is around 5.5-6.0 then it is best for our lungs. I had not heard that until last year even though I had gone to a regular endocrinologist from the time I was diagnosed until now. That could be something that is affecting his breathing without there being a serious infection. I know for me I have a hard time controlling my BSs when I am in the hospital - the lack of activity and all.

Also you mentioned the Oregano Oil. I would ask your doctors first. I think it definitely has the potential to help, but I have also read some of the replies and posts from people on this site and do not feel that I am getting the same results from using it. That is just my personal feelings about it all. I have tried taking it for almost 2 months now, and just don't feel the same that other people have posted they have felt, so it may be something that you want to run by your docs before you just start using it <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Good luck to you and I hope that your brother starts to feel better very soon.

Best of Luck and Take Care.

Lindsey
23 w/CF and CFRD

 

[anonymous]

I don't know if this has been mentioned or if anyone has brought this up to you - as far as doctors go - but it is possible that if your brother has CFRD and his blood sugars are not under good control that they could be causing some problems too.
I had a CF endocrinologist explain to me that for a CF patient the level of your B.S.s needs to be more controlled than that of a normal "healthy" diabetes patient. He said that our bodies react to high blood sugar as a sign of illness and then they try to "heal" themselves (not medical terms in case ya didn't know) and this in turn can cause inflammation in the lungs. If you blood sugars are under control and your Hemoglobin A1C is around 5.5-6.0 then it is best for our lungs. I had not heard that until last year even though I had gone to a regular endocrinologist from the time I was diagnosed until now. That could be something that is affecting his breathing without there being a serious infection. I know for me I have a hard time controlling my BSs when I am in the hospital - the lack of activity and all.

Also you mentioned the Oregano Oil. I would ask your doctors first. I think it definitely has the potential to help, but I have also read some of the replies and posts from people on this site and do not feel that I am getting the same results from using it. That is just my personal feelings about it all. I have tried taking it for almost 2 months now, and just don't feel the same that other people have posted they have felt, so it may be something that you want to run by your docs before you just start using it <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Good luck to you and I hope that your brother starts to feel better very soon.

Best of Luck and Take Care.

Lindsey
23 w/CF and CFRD