Feel Like He's Killing Himself- Please Please Help

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CFstubborn

New member
I'm in a commited relationship with someone who has CF. For some quick background information my partner is in his late twenties and has already recieved a liver and lung transplant and has CF diabetes.I need help. I need answers. Please read this and give me any information you can pass along to ease my mind or steer me in the right direction.My partner is very good about taking his morning and night time medication, granted, I remind him every chance I get just as a back up so he doesnt accidently forget (his lungs are still very new so I dont want him to miss out on anti rejection meds). The problem is.. He never takes his insulin or his digestive pills. He doesn't normally go to his excercise appointments and he eats way to much salt- to the point that his potassium is now raised.I almost broke down infront of him because I honestly don't understand why he chooses not to take care of himself and he told me he does "all the important things" but its my understanding that CF can attack the pancreas and thats why insulin is needed.. I am extremely frustrated/anxious and worried for him. I do not want him to hurt himself by doing this.His attitude towards his CF is very.. negative. He doesn't want to talk about anything to do with it, he just wants to be normal and live his life out side of the hospital. He's tired of feeling like hes always going to die but now it seems like he has stopped caring about his health all together.So please, is this normal to skip so many medications or just blatantly ignore some? I really need to know if I am blowing this out of proportion because I don't understand or if this is a serious issue that I need to readdress to him and make sure he follows up on.Please please help!
 
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CFstubborn

New member
I'm in a commited relationship with someone who has CF. For some quick background information my partner is in his late twenties and has already recieved a liver and lung transplant and has CF diabetes.I need help. I need answers. Please read this and give me any information you can pass along to ease my mind or steer me in the right direction.My partner is very good about taking his morning and night time medication, granted, I remind him every chance I get just as a back up so he doesnt accidently forget (his lungs are still very new so I dont want him to miss out on anti rejection meds). The problem is.. He never takes his insulin or his digestive pills. He doesn't normally go to his excercise appointments and he eats way to much salt- to the point that his potassium is now raised.I almost broke down infront of him because I honestly don't understand why he chooses not to take care of himself and he told me he does "all the important things" but its my understanding that CF can attack the pancreas and thats why insulin is needed.. I am extremely frustrated/anxious and worried for him. I do not want him to hurt himself by doing this.His attitude towards his CF is very.. negative. He doesn't want to talk about anything to do with it, he just wants to be normal and live his life out side of the hospital. He's tired of feeling like hes always going to die but now it seems like he has stopped caring about his health all together.So please, is this normal to skip so many medications or just blatantly ignore some? I really need to know if I am blowing this out of proportion because I don't understand or if this is a serious issue that I need to readdress to him and make sure he follows up on.Please please help!
 
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Havoc

New member
Many people don't take their medications as they should (not just CFers), especially when they are on many. I think you really need to put yourself in his shoes. He's in his late 20's and obviously has a litany of health issues. Would you want to be constantly reminded that your days are numbered and spend most of your time thinking about your treatments and medications, or would you want to live your remaining years with some semblance of normalcy? The average life expectancy after transplant is 8 years, only 17% live 10 or more. Frankly, I would never consider a transplant for myself. For me 8 more years of anti-rejection meds and the hassle that comes with that are not worth it to me.

On a side note, you do realize that CFers crave salt, and we need lots of it, right? I'm not sure where you got the connection between eating salt and increased potassium levels.

In any case, I think he should be a little more diligent about enzymes and insulin. Having said that, I'm not in his shoes. Likely the best route is to see if he's willing to speak to a counselor to get to the root of how he feels and why he is shrugging off exercise and some of his medications.
 
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Havoc

New member
Many people don't take their medications as they should (not just CFers), especially when they are on many. I think you really need to put yourself in his shoes. He's in his late 20's and obviously has a litany of health issues. Would you want to be constantly reminded that your days are numbered and spend most of your time thinking about your treatments and medications, or would you want to live your remaining years with some semblance of normalcy? The average life expectancy after transplant is 8 years, only 17% live 10 or more. Frankly, I would never consider a transplant for myself. For me 8 more years of anti-rejection meds and the hassle that comes with that are not worth it to me.

On a side note, you do realize that CFers crave salt, and we need lots of it, right? I'm not sure where you got the connection between eating salt and increased potassium levels.

In any case, I think he should be a little more diligent about enzymes and insulin. Having said that, I'm not in his shoes. Likely the best route is to see if he's willing to speak to a counselor to get to the root of how he feels and why he is shrugging off exercise and some of his medications.
 
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CFstubborn

New member
I can't say I understand his situation but I try to and with saying that I don't treat him any differently or force feed the "you shouldn't be doing that because of x and y problems you have". The truth is, like I said in my original post, I just don't know enough about it.. I know the 'surface' material I think and that's the source of my anxiety I feel. I just didn't know if it was normal or harming him.

As for the potassium levels, his are elevated and apparently salt doesn't help to bring it down but he doesn't listen and eats ridiculous salty foods anyway. That's what I was getting at and that's the information I am relaying.

I'm just honestly worried for him. More so because of the missed insulin injections because out of everything that seems like something important. Thank you for your response though, I really do appreciate it.
 
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CFstubborn

New member
I can't say I understand his situation but I try to and with saying that I don't treat him any differently or force feed the "you shouldn't be doing that because of x and y problems you have". The truth is, like I said in my original post, I just don't know enough about it.. I know the 'surface' material I think and that's the source of my anxiety I feel. I just didn't know if it was normal or harming him.

As for the potassium levels, his are elevated and apparently salt doesn't help to bring it down but he doesn't listen and eats ridiculous salty foods anyway. That's what I was getting at and that's the information I am relaying.

I'm just honestly worried for him. More so because of the missed insulin injections because out of everything that seems like something important. Thank you for your response though, I really do appreciate it.
 
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Rebjane

Super Moderator
I imagine you must be scared because you love him and want him around. I don't know what the answer is because he has to take responsibility for his own health. My first thought was that he has already had a liver/lung transplant; my feeling(only my opinion) is that he needs to take care of himself in honor of the life lost to those generously donated organs.
 
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Rebjane

Super Moderator
I imagine you must be scared because you love him and want him around. I don't know what the answer is because he has to take responsibility for his own health. My first thought was that he has already had a liver/lung transplant; my feeling(only my opinion) is that he needs to take care of himself in honor of the life lost to those generously donated organs.
 
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Havoc

New member
You're quite correct, salt won't decrease potassium levels, but it won't increase them either. His increased potassium could be linked to kidney disease, which could be related to his diabetes. You might put that to him as a reason to take his insulin as prescribed.

Sometimes, and this is true for me, when someone is on my case about doing something it makes me not want to do it all the more. This is obviously speculation on my part, but it could be compounding the problem. I still think having him talk to a counselor might be the best bet.

If you have trouble understanding the disease pathology feel free to email me. I will be out most of the rest of the day, but I will get back to you as soon as possible.
 
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Havoc

New member
You're quite correct, salt won't decrease potassium levels, but it won't increase them either. His increased potassium could be linked to kidney disease, which could be related to his diabetes. You might put that to him as a reason to take his insulin as prescribed.

Sometimes, and this is true for me, when someone is on my case about doing something it makes me not want to do it all the more. This is obviously speculation on my part, but it could be compounding the problem. I still think having him talk to a counselor might be the best bet.

If you have trouble understanding the disease pathology feel free to email me. I will be out most of the rest of the day, but I will get back to you as soon as possible.
 
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CFstubborn

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i> I imagine you must be scared because you love him and want him around. I don't know what the answer is because he has to take responsibility for his own health. My first thought was that he has already had a liver/lung transplant; my feeling(only my opinion) is that he needs to take care of himself in honor of the life lost to those generously donated organs.</end quote>Yes, I've come to terms with the fact that his life will be shorter then mine and I'm more then prepared to handle that situation when the time comes but.. I don't want that time to come quicker then it has to.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i> You're quite correct, salt won't decrease potassium levels, but it won't increase them either. His increased potassium could be linked to kidney disease, which could be related to his diabetes. You might put that to him as a reason to take his insulin as prescribed. Sometimes, and this is true for me, when someone is on my case about doing something it makes me not want to do it all the more. This is obviously speculation on my part, but it could be compounding the problem. I still think having him talk to a counselor might be the best bet. If you have trouble understanding the disease pathology feel free to email me. I will be out most of the rest of the day, but I will get back to you as soon as possible.</end quote>The family he is currently living with (were in the process of fully moving intogether) is constantly on his case and making rude remarks that if he doesn't become more responsible hes going to die young- I think this is a huge contributer to why he doesn't want to talk about anything and I agree with you that because of this almost constant hounding its making him shy away from it.. Its also the reason why I try my hardest to avoid telling him what to do or mentioning what I -think- he should be doing.Also thank you so much Havoc, I think I will take you up on your offer and send you an e-mail. You have been really helpful and I think I will approch my partner about the insulin but leave out all the rest (digestive pills, over eating of salt and missed excercise).
 
C

CFstubborn

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i> I imagine you must be scared because you love him and want him around. I don't know what the answer is because he has to take responsibility for his own health. My first thought was that he has already had a liver/lung transplant; my feeling(only my opinion) is that he needs to take care of himself in honor of the life lost to those generously donated organs.</end quote>Yes, I've come to terms with the fact that his life will be shorter then mine and I'm more then prepared to handle that situation when the time comes but.. I don't want that time to come quicker then it has to.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i> You're quite correct, salt won't decrease potassium levels, but it won't increase them either. His increased potassium could be linked to kidney disease, which could be related to his diabetes. You might put that to him as a reason to take his insulin as prescribed. Sometimes, and this is true for me, when someone is on my case about doing something it makes me not want to do it all the more. This is obviously speculation on my part, but it could be compounding the problem. I still think having him talk to a counselor might be the best bet. If you have trouble understanding the disease pathology feel free to email me. I will be out most of the rest of the day, but I will get back to you as soon as possible.</end quote>The family he is currently living with (were in the process of fully moving intogether) is constantly on his case and making rude remarks that if he doesn't become more responsible hes going to die young- I think this is a huge contributer to why he doesn't want to talk about anything and I agree with you that because of this almost constant hounding its making him shy away from it.. Its also the reason why I try my hardest to avoid telling him what to do or mentioning what I -think- he should be doing.Also thank you so much Havoc, I think I will take you up on your offer and send you an e-mail. You have been really helpful and I think I will approch my partner about the insulin but leave out all the rest (digestive pills, over eating of salt and missed excercise).
 
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Tisha

New member
I've had had my periods of "rebelliousness" where I haven't wanted to do my nebs and particularly my lung therapy (I've always hated it and I guess I always will). But how can your boyfriend not take his enzymes? If you take less than you need, the diarrhea and stomachache are quite unbearable! If he's complaining about them, maybe he's just not properly dosed - too many enzymes gives you hard stools and discomfort. But I cannot imagine anyone willingly causing himself such a pain, by routinely missing his enzymes! Do check that...

As for positiveness, indeed attitude is key! Feel free to read my story (link below).
And as for you, thanks for being such a supportive girlfriend!!
 
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Tisha

New member
I've had had my periods of "rebelliousness" where I haven't wanted to do my nebs and particularly my lung therapy (I've always hated it and I guess I always will). But how can your boyfriend not take his enzymes? If you take less than you need, the diarrhea and stomachache are quite unbearable! If he's complaining about them, maybe he's just not properly dosed - too many enzymes gives you hard stools and discomfort. But I cannot imagine anyone willingly causing himself such a pain, by routinely missing his enzymes! Do check that...

As for positiveness, indeed attitude is key! Feel free to read my story (link below).
And as for you, thanks for being such a supportive girlfriend!!
 
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SassyGirl13

Guest
Hi, living w/CFRD for23 years now I can say I have learned a lot through my past actions. Ever since I got CFRD, I haven't had problems gaining weight and have had a great appetite (except when I'm sick) so I "assumed" I didn't need my enzymes and didn't take them for about 10 years. 2 years ago I got my wake up call when I ended up in the ER with a kidneystone. It was very painfull but the worst part is when the looked at my kidneys, I had 9 or 10 more in each one. I found out the cause was because I wasn't taking my enzymes. I had surgery to remove them and have never skipped my enzymes since. As for the insulin, that's very scary. I know insulin for myself has been extremely hard to control- I will go from 350 to 35 at the drop of a hat and have found that very stressful and hard to control. I've had seizures, car accidents and more due to low blood sugar. Despite that, the last thing I want is to lose my sight or legs from diabetes complications. There are times for me when everything becomes overwhelming but you have to try to look on the bright side. I realize I'd probably be dead if I hadn't gotten the diabetes because I hated eating and was severely underweight . At least diabetes gave me an appetite. Im so lucky to have a supporting husband and wonderful friends. I think different things motivate different people but it's important to stand by him and help him find his motivation. Not sure if that was helpful but just wanted you to know that you're not alone. Sometimes I need a push from someone else to keep going and realize what's important to me. Best of luck!
 
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SassyGirl13

Guest
Hi, living w/CFRD for23 years now I can say I have learned a lot through my past actions. Ever since I got CFRD, I haven't had problems gaining weight and have had a great appetite (except when I'm sick) so I "assumed" I didn't need my enzymes and didn't take them for about 10 years. 2 years ago I got my wake up call when I ended up in the ER with a kidneystone. It was very painfull but the worst part is when the looked at my kidneys, I had 9 or 10 more in each one. I found out the cause was because I wasn't taking my enzymes. I had surgery to remove them and have never skipped my enzymes since. As for the insulin, that's very scary. I know insulin for myself has been extremely hard to control- I will go from 350 to 35 at the drop of a hat and have found that very stressful and hard to control. I've had seizures, car accidents and more due to low blood sugar. Despite that, the last thing I want is to lose my sight or legs from diabetes complications. There are times for me when everything becomes overwhelming but you have to try to look on the bright side. I realize I'd probably be dead if I hadn't gotten the diabetes because I hated eating and was severely underweight . At least diabetes gave me an appetite. Im so lucky to have a supporting husband and wonderful friends. I think different things motivate different people but it's important to stand by him and help him find his motivation. Not sure if that was helpful but just wanted you to know that you're not alone. Sometimes I need a push from someone else to keep going and realize what's important to me. Best of luck!
 
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ladeedah

Guest
Something that no one has mentioned yet is the possibility that your boyfriend could be going through a depression ... possibly caused by side-effects to one (or probably several) of the drugs that he is required to take. All drugs have side effects and all too often one of the side effects is depression. My own daughter had that problem and after some research was able to figure out which drugs were probably causing the problem and then worked with her CF doctor to make some adjustments or changes ... which helped to ease the depression enough that she did not have to add on antidepressants to her long list of medications. Your boyfriend is lucky to have someone like you that cares so much for him and his health.
 
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ladeedah

Guest
Something that no one has mentioned yet is the possibility that your boyfriend could be going through a depression ... possibly caused by side-effects to one (or probably several) of the drugs that he is required to take. All drugs have side effects and all too often one of the side effects is depression. My own daughter had that problem and after some research was able to figure out which drugs were probably causing the problem and then worked with her CF doctor to make some adjustments or changes ... which helped to ease the depression enough that she did not have to add on antidepressants to her long list of medications. Your boyfriend is lucky to have someone like you that cares so much for him and his health.
 
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JustDucky

New member
It has to be hard to be on the sidelines and feel helpless when it comes to medications etc.....How are his sugars? Being that he is on transplant meds (probably includes steroids of sorts), his sugar levels are at risk of being high....If they remain high, I don't need to tell you that his kidneys and other vital organs would suffer. That might explain his high potassium levels...also, transplant meds are pretty harsh on the kidneys so it is to his benefit that he tries to keep his sugars under control (and he most likely knows this already). Transplant meds also might increase blood pressure, so sometimes salt intake should be watched for that reason.

Living in that atmosphere can't be helping things....I personally hate being nagged to the point of being rebellious if someone does it enough. Of course, in this case, the stakes are much higher. It sounds like he just wants to be like everyone else and he is taking just enough of his meds to keep his body from rejecting his lungs.. the other pills be damned. You said he hasn't been transplanted for long, this is a huge adjustment for him I imagine, and overwhelming. I hope with time he becomes more compliant with his other meds, especially his insulin. Enzymes are important too, he won't absorb nutrients properly without them, but I am more concerned about the consequence of prolonged high blood sugar levels.

Keep being there for him, gradually open up different topics of discussion....don't bombard him all at once. Maybe his family could back off of him as well and just let him breathe..

Jenn 40 wCF
 
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JustDucky

New member
It has to be hard to be on the sidelines and feel helpless when it comes to medications etc.....How are his sugars? Being that he is on transplant meds (probably includes steroids of sorts), his sugar levels are at risk of being high....If they remain high, I don't need to tell you that his kidneys and other vital organs would suffer. That might explain his high potassium levels...also, transplant meds are pretty harsh on the kidneys so it is to his benefit that he tries to keep his sugars under control (and he most likely knows this already). Transplant meds also might increase blood pressure, so sometimes salt intake should be watched for that reason.

Living in that atmosphere can't be helping things....I personally hate being nagged to the point of being rebellious if someone does it enough. Of course, in this case, the stakes are much higher. It sounds like he just wants to be like everyone else and he is taking just enough of his meds to keep his body from rejecting his lungs.. the other pills be damned. You said he hasn't been transplanted for long, this is a huge adjustment for him I imagine, and overwhelming. I hope with time he becomes more compliant with his other meds, especially his insulin. Enzymes are important too, he won't absorb nutrients properly without them, but I am more concerned about the consequence of prolonged high blood sugar levels.

Keep being there for him, gradually open up different topics of discussion....don't bombard him all at once. Maybe his family could back off of him as well and just let him breathe..

Jenn 40 wCF
 
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