Feel Like He's Killing Himself- Please Please Help

[CFstubborn]

Wow thank you all for the incoming comments, it really means a lot to me to read them and hear other peoples perspective/story. I definitely feel less anxious and frustrated now, thank you all so much.

As for his digestive pills- he doesn't seem to get stomach aches but his stomach is constantly upset, not the point where he is running to the bathroom but it makes some pretty nasty noises after hes done eating. The kidney stones sounds really painful and actually sounds a lot like him- he has a GREAT appetite and has put on 50ilbs since his return from the hospital (a little over a month now) so its possible he just doesn't feel like he needs them right now.. I will have to mention that to him and see if it sways him to take them.

The depression could be a possibility..I'm actually trying to talk with him more about it, when I'm not around he never sleeps and says hes to busy thinking to fall asleep. It worries me but I never thought it could be related to his medications so this is really helpful insight and sometime soon I will have a serious talk with how hes feeling.. I just don't want to bombard him all at once with all this haha.

 

[CFstubborn]

Wow thank you all for the incoming comments, it really means a lot to me to read them and hear other peoples perspective/story. I definitely feel less anxious and frustrated now, thank you all so much.

As for his digestive pills- he doesn't seem to get stomach aches but his stomach is constantly upset, not the point where he is running to the bathroom but it makes some pretty nasty noises after hes done eating. The kidney stones sounds really painful and actually sounds a lot like him- he has a GREAT appetite and has put on 50ilbs since his return from the hospital (a little over a month now) so its possible he just doesn't feel like he needs them right now.. I will have to mention that to him and see if it sways him to take them.

The depression could be a possibility..I'm actually trying to talk with him more about it, when I'm not around he never sleeps and says hes to busy thinking to fall asleep. It worries me but I never thought it could be related to his medications so this is really helpful insight and sometime soon I will have a serious talk with how hes feeling.. I just don't want to bombard him all at once with all this haha.

 

[CFstubborn]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JustDucky</b></i> It has to be hard to be on the sidelines and feel helpless when it comes to medications etc.....How are his sugars? </end quote>Its hard sometimes, like I originally said.. I do get frustrasted and anxious but I love him very very much and I never let that get in the way of our relationship. I want to be there for him and I want to be the person he feels comfortable talking to and sharing with, that is the most important thing for me so even if I get flustered over his..Sometimes uncaring attitude towards his health I just look for solutions or something I could do to motivate him or better understand him which is the reason I originally posted here. His sugar levels are high, I think if I am remembering correctly the last time he took his test it was at 17 or 20 or so. I'm not sure how high or low that is but when he did it he told me it was elevated.

 

[CFstubborn]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JustDucky</b></i> It has to be hard to be on the sidelines and feel helpless when it comes to medications etc.....How are his sugars? </end quote>Its hard sometimes, like I originally said.. I do get frustrasted and anxious but I love him very very much and I never let that get in the way of our relationship. I want to be there for him and I want to be the person he feels comfortable talking to and sharing with, that is the most important thing for me so even if I get flustered over his..Sometimes uncaring attitude towards his health I just look for solutions or something I could do to motivate him or better understand him which is the reason I originally posted here. His sugar levels are high, I think if I am remembering correctly the last time he took his test it was at 17 or 20 or so. I'm not sure how high or low that is but when he did it he told me it was elevated.

 

[Anomie]

Maybe a prescription for anti-depressants would give him the extra boost he needs to stay on top of his care regimen.

 

[Anomie]

Maybe a prescription for anti-depressants would give him the extra boost he needs to stay on top of his care regimen.

 

[jamoncita]

i imagine he's probably at least a little depressed. he obviously has got a lot on his plate, and that can be overwhelming for anyone. you mention his family makes comments that he'll die if he doesn't take better care of himself, which is so far from helpful. i'm sure he's well aware of living with the threat of an early death, and it's incredibly insensitive to suggest he doesn't realize the risks of not taking care of himself. imagine how terrifying it is to have that knowledge looming over you. it's much easier to stop thinking about it altogether and stop fighting.
i also have to say that i personally find it aggravating to have people constantly reminding me to take my meds. though it's done with good intentions it makes me feel as though i can't take care of myself. you say he's in his late twenties; i doubt he needs to be nagged about things he must have been living with his whole life (assuming he was diagnosed early, he must be used to taking lots of meds and doing treatments).
and no offense to you, but as much as you want to be the one that your man talks to and expresses his feelings to, what he may need is to talk to other cfers. i often feel there is just no way of fully satisfying the longing to be understood with someone not directly affected by this illness. you should suggest therapy, writing in a journal, and focus more on enjoying life and your time together. go out and do normal things you both enjoy doing!
i know it must be scary to see that he is not taking care of himself, but all you can do is keep loving him. i suggest you also seek some form of therapy to talk out your fears and anxiety because you're there dealing with a lot of the stuff he's going through, and it's important you take care of yourself, too.
good luck. sorry if this comes off as negative. there is hope, but you don't find it worrying yourself sick. and by the way, here's a cyber hug!! <3

 

[jamoncita]

i imagine he's probably at least a little depressed. he obviously has got a lot on his plate, and that can be overwhelming for anyone. you mention his family makes comments that he'll die if he doesn't take better care of himself, which is so far from helpful. i'm sure he's well aware of living with the threat of an early death, and it's incredibly insensitive to suggest he doesn't realize the risks of not taking care of himself. imagine how terrifying it is to have that knowledge looming over you. it's much easier to stop thinking about it altogether and stop fighting.
i also have to say that i personally find it aggravating to have people constantly reminding me to take my meds. though it's done with good intentions it makes me feel as though i can't take care of myself. you say he's in his late twenties; i doubt he needs to be nagged about things he must have been living with his whole life (assuming he was diagnosed early, he must be used to taking lots of meds and doing treatments).
and no offense to you, but as much as you want to be the one that your man talks to and expresses his feelings to, what he may need is to talk to other cfers. i often feel there is just no way of fully satisfying the longing to be understood with someone not directly affected by this illness. you should suggest therapy, writing in a journal, and focus more on enjoying life and your time together. go out and do normal things you both enjoy doing!
i know it must be scary to see that he is not taking care of himself, but all you can do is keep loving him. i suggest you also seek some form of therapy to talk out your fears and anxiety because you're there dealing with a lot of the stuff he's going through, and it's important you take care of yourself, too.
good luck. sorry if this comes off as negative. there is hope, but you don't find it worrying yourself sick. and by the way, here's a cyber hug!! <3

 

[athanasia]

After I had my transplant, I felt amazing! I was solid on taking my pills but not so much on the other stuff. I got the sugar issues following transplant because of the meds along with high blood pressures and kidney issues. I am getting much better at the insulin because my docs put me on the flexpens instead of the vials and needles. This made the insulin stuff much easier to handle because it was so easy and not a burden to keep on me. My fiance also helps by giving me the doses if he is around when I take it. That is an option if he isn't on the pens.

The anti-rejection meds do cause many side effects and insomnia can be one. He might also be depressed as mentioned by others and this can be for many reasons. I had some issues sometime after my transplant because my family treated me like I was 5 and were over protective (I know it was because they love me but it makes it hard). I had to tell them where I was going, who I was with, and 50 other questions followed by a lecture about whether or not that is a good idea. They thought I had to be in a 'bubble' after transplant and that is not true. We just need to be more aware and cautious of things that we didn't think about as much before. But this kind of treatment got me really depressed so much so that I actively chose to live in my car for the summer (which may not have been the best of ideas but it gave me the time and space to deal with my own thought and emotions after transplant and the changes that happened in my life). It got me out of the stressful environment which helped with blood pressure and other things so I am glad that you two are working to change that situation.

I also know others who get depressed after transplant because they have what is called 'survivor's guilt' where they feel guilty for surviving when their donor didn't. Not everyone has this but some do. They have a hard time remembering that no one died FOR them. It make take time to realize that it was a gift given out of love. As I call it 'making miracles from tragedy'. I don't know if this is the case or not but just thought I would mention it.

I am also very lucky to have a fiance similar to you who is not only concerned but seeks out to find answers and support when needed. He has a blog where he also talks about being the partner of a CFer along with links to others with blogs about CF life (http://aheapofbrokenimages.com) if you want to check it out or contact him. He has several CF partners that he talks to for support if you were interested. I think you are doing an amazing job and just keep it up! I know we can be hard to deal with and frustrating at times but having the love and support of someone who cares does a lot. Good luck with everything<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[athanasia]

After I had my transplant, I felt amazing! I was solid on taking my pills but not so much on the other stuff. I got the sugar issues following transplant because of the meds along with high blood pressures and kidney issues. I am getting much better at the insulin because my docs put me on the flexpens instead of the vials and needles. This made the insulin stuff much easier to handle because it was so easy and not a burden to keep on me. My fiance also helps by giving me the doses if he is around when I take it. That is an option if he isn't on the pens.

The anti-rejection meds do cause many side effects and insomnia can be one. He might also be depressed as mentioned by others and this can be for many reasons. I had some issues sometime after my transplant because my family treated me like I was 5 and were over protective (I know it was because they love me but it makes it hard). I had to tell them where I was going, who I was with, and 50 other questions followed by a lecture about whether or not that is a good idea. They thought I had to be in a 'bubble' after transplant and that is not true. We just need to be more aware and cautious of things that we didn't think about as much before. But this kind of treatment got me really depressed so much so that I actively chose to live in my car for the summer (which may not have been the best of ideas but it gave me the time and space to deal with my own thought and emotions after transplant and the changes that happened in my life). It got me out of the stressful environment which helped with blood pressure and other things so I am glad that you two are working to change that situation.

I also know others who get depressed after transplant because they have what is called 'survivor's guilt' where they feel guilty for surviving when their donor didn't. Not everyone has this but some do. They have a hard time remembering that no one died FOR them. It make take time to realize that it was a gift given out of love. As I call it 'making miracles from tragedy'. I don't know if this is the case or not but just thought I would mention it.

I am also very lucky to have a fiance similar to you who is not only concerned but seeks out to find answers and support when needed. He has a blog where he also talks about being the partner of a CFer along with links to others with blogs about CF life (http://aheapofbrokenimages.com) if you want to check it out or contact him. He has several CF partners that he talks to for support if you were interested. I think you are doing an amazing job and just keep it up! I know we can be hard to deal with and frustrating at times but having the love and support of someone who cares does a lot. Good luck with everything<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CrisDopher]

You say he's taking his transplant meds, but not his enzymes or insulin. But what are his glucose readings? What's his a1c? How's his weight? What is his resting heart rate? These are questions with real numbers attached to the answers. If he's keeping his weight up effectively and not suffering malnutrition, maybe he doesn't need the enzymes as much as the doctors (and you) think. If his a1c is good and his blood sugars remain in a healthy range, maybe he doesn't need as much insulin. Perhaps you two can talk to his endocrinologist and switch his insulin from a bolus to a basil (if he's not already taking basil). The amount of health maintenance can be overwhelming and sometimes, when we're healthy, seem like so much fuss over nothing. Sometimes the answer is not just to get better about doing the various therapies, but also find ways to logically and acceptably decrease the amount of them.

 

[CrisDopher]

You say he's taking his transplant meds, but not his enzymes or insulin. But what are his glucose readings? What's his a1c? How's his weight? What is his resting heart rate? These are questions with real numbers attached to the answers. If he's keeping his weight up effectively and not suffering malnutrition, maybe he doesn't need the enzymes as much as the doctors (and you) think. If his a1c is good and his blood sugars remain in a healthy range, maybe he doesn't need as much insulin. Perhaps you two can talk to his endocrinologist and switch his insulin from a bolus to a basil (if he's not already taking basil). The amount of health maintenance can be overwhelming and sometimes, when we're healthy, seem like so much fuss over nothing. Sometimes the answer is not just to get better about doing the various therapies, but also find ways to logically and acceptably decrease the amount of them.

 

[azdesertrat]

I'm happy to see so many people responding to this young lady's plea for help; there are an awful lot of caring people in this little 'community' of ours. I'd like to put in my 2 cents. I've never had any problems with not taking my meds. I've been on enzymes as long as I can remember. If I don't take them I'll be in big trouble; there aint enough pain killers made to get rid of 'gut pain' from an enzyme deficiency. I can't imagine him not taking those. As far as insulin, yea, it sucks to have to give myself a shot up to 5 times a day but that is the hand I've been dealt. I hate having to do all this crap. Sometimes the trans staff will paint an unrealistic picture of life post-trans. I know mine did. I have had plenty of issues post-trans but I've been able to suck it up & keep on keeping on. Like many in my shoes I take an anti-depressant & if I skip that little pill I do notice it. I'm sure your man will benefit from something like that. Please tell him that scientists are making headway daily in the fight to make CF more livable. They may very well come up with a cure in MY lifetime! Hang in there. May God be with you both; you're in my prayers...

 

[azdesertrat]

I'm happy to see so many people responding to this young lady's plea for help; there are an awful lot of caring people in this little 'community' of ours. I'd like to put in my 2 cents. I've never had any problems with not taking my meds. I've been on enzymes as long as I can remember. If I don't take them I'll be in big trouble; there aint enough pain killers made to get rid of 'gut pain' from an enzyme deficiency. I can't imagine him not taking those. As far as insulin, yea, it sucks to have to give myself a shot up to 5 times a day but that is the hand I've been dealt. I hate having to do all this crap. Sometimes the trans staff will paint an unrealistic picture of life post-trans. I know mine did. I have had plenty of issues post-trans but I've been able to suck it up & keep on keeping on. Like many in my shoes I take an anti-depressant & if I skip that little pill I do notice it. I'm sure your man will benefit from something like that. Please tell him that scientists are making headway daily in the fight to make CF more livable. They may very well come up with a cure in MY lifetime! Hang in there. May God be with you both; you're in my prayers...

 

[CFstubborn]

Thank you again to everyone! Since my last post I have spoken with my partner about a lot of the things that I had originally come here to ask about.. All of you have really helped me to understand a little bit more about the medication and CF itself, so thank you all so much. I feel like I am in a better place now and looking back (even though it was only days ago) I feel I definitely over reacted because I didn't fully understand what was/is going on. Of course, I'm no where near being an expert but I feel a little more knowledgeable now, so once again, thank you everyone.

Just as an update my partner has agreed to monitor his blood sugar and use insulin when required and as for his enzymes, hes going to take them when he feels there necessary and I'm not going to push it on him. I have also spoken with him about depression and hes assured me that he is feeling well, despite that, I left the offer on the table to seek out therapy if he ever felt like things were getting to rough so he knows that option is always available.

I am going to trust him to do what he thinks and feels is best for himself and his health at this point as long he takes his morning and night meds and stays on top of his insulin. As a few of you have pointed out, hes been doing this for his whole life and it would be ignorant (and maybe even a little rude) of me to assume I know whats best for him or I know more about whats going on with him then he does. I really feel much better and feel our relationship has become stronger just over a couple of talks, so once again, thank you everyone for being so helpful, kind and understanding towards me.

 

[CFstubborn]

Thank you again to everyone! Since my last post I have spoken with my partner about a lot of the things that I had originally come here to ask about.. All of you have really helped me to understand a little bit more about the medication and CF itself, so thank you all so much. I feel like I am in a better place now and looking back (even though it was only days ago) I feel I definitely over reacted because I didn't fully understand what was/is going on. Of course, I'm no where near being an expert but I feel a little more knowledgeable now, so once again, thank you everyone.

Just as an update my partner has agreed to monitor his blood sugar and use insulin when required and as for his enzymes, hes going to take them when he feels there necessary and I'm not going to push it on him. I have also spoken with him about depression and hes assured me that he is feeling well, despite that, I left the offer on the table to seek out therapy if he ever felt like things were getting to rough so he knows that option is always available.

I am going to trust him to do what he thinks and feels is best for himself and his health at this point as long he takes his morning and night meds and stays on top of his insulin. As a few of you have pointed out, hes been doing this for his whole life and it would be ignorant (and maybe even a little rude) of me to assume I know whats best for him or I know more about whats going on with him then he does. I really feel much better and feel our relationship has become stronger just over a couple of talks, so once again, thank you everyone for being so helpful, kind and understanding towards me.