My sister is waiting for a lung transplant. Help me reduce her anxiety.
June 10, 2012 6:20 PM Subscribe
My sister is in hospital waiting for a lung transplant. Help me keep her rampaging anxiety under control.
Right now my thirtysomething sister is in hospital waiting for a lung transplant. (She has pulmonary fibrosis, a progressive degenerative disease that reduces lung function until they eventually quit.) Quite unexpectedly her lungs gave out and she was rushed to hospital, where she has been for the past week, hooked up to an intravenous blood oxygenator (though fortunately she was able to go off the respirator and is only using nose oxygen at the moment). At this point she is waiting for donor lungs, which could come at any time.
The problem is, even though she has truly world-class care from an amazing team of doctors and nurses, she is constantly stressed out, which is understandable. She can't leave her bed, she is hooked up to a big thing that circulates her blood and she is terrified that at any minute her world is going to end. (Her nurses are wonderful and calm her with soothing talk, as do other medical people, but my sister is too smart and doubtful for her own good.) FYI she is also not able to have tons of anti-anxiety meds because many of them suppress her breathing.
This stress is bad. It elevates her blood pressure, makes her breathing more labored and causes mental agony at times. So my question is, does anyone who has gone through something similar in some way have any tips for my sister on how to keep her stress and fear and anxiety under control? Any experience from other Mefites would be mucho appreciated.
Thank you. (And please become a donor, it really does save lives.)
Right now my thirtysomething sister is in hospital waiting for a lung transplant. (She has pulmonary fibrosis, a progressive degenerative disease that reduces lung function until they eventually quit.) Quite unexpectedly her lungs gave out and she was rushed to hospital, where she has been for the past week, hooked up to an intravenous blood oxygenator (though fortunately she was able to go off the respirator and is only using nose oxygen at the moment). At this point she is waiting for donor lungs, which could come at any time.
The problem is, even though she has truly world-class care from an amazing team of doctors and nurses, she is constantly stressed out, which is understandable. She can't leave her bed, she is hooked up to a big thing that circulates her blood and she is terrified that at any minute her world is going to end. (Her nurses are wonderful and calm her with soothing talk, as do other medical people, but my sister is too smart and doubtful for her own good.) FYI she is also not able to have tons of anti-anxiety meds because many of them suppress her breathing.
This stress is bad. It elevates her blood pressure, makes her breathing more labored and causes mental agony at times. So my question is, does anyone who has gone through something similar in some way have any tips for my sister on how to keep her stress and fear and anxiety under control? Any experience from other Mefites would be mucho appreciated.
Thank you. (And please become a donor, it really does save lives.)
This is a good time to catch up on movies. Bring her a laptop or iPad that you've loaded up with stuff she'd like, rented from the iTunes store or wherever.
posted by fingersandtoes at 6:40 PM on June 10, 2012
posted by fingersandtoes at 6:40 PM on June 10, 2012
Oh wow I'm sorry; that sounds really, really scary. If it were me, if I were the patient, my anxiety would come from not knowing what was happening or what was to come. Can you educate yourself (if you haven't already) on exactly what the likeliest scenarios or outcomes are at this point, and reassure her, with an appropriate amount of detail, that she will be taken care of, and how. Empty reassurance can be just as anxiety-producing as straight-up bad news; lean on the positive in your explanation to her, but get a good handle on what is going to happen.
posted by Philemon at 6:41 PM on June 10, 2012 [1 favorite]
posted by Philemon at 6:41 PM on June 10, 2012 [1 favorite]
Best answer: Jumping on SMPA's idea, could you bring her books on tape/CD/iPod? They're more engrossing than TV.
On the other hand, if the hospital has ESPN (if she's in the US), it's Euro 2012 for the next few weeks. Maybe soccer could strike a balance between interesting enough to hold her attention but disinteresting enough (if she has no applicable national allegiance) to not be stressful. The commentary is pretty bad, so she's not likely to learn that much about soccer, but I find it soothing to watch as a neutral.
Somewhere there are activities that strike a balance between not requiring mental energy or concentration (as hers is presumably shot) and not being so boring that she just goes straight back to worrying.
Knitting? Crocheting? Makes books on tape or TV much less boring and is relaxing.
posted by hoyland at 6:43 PM on June 10, 2012 [4 favorites]
On the other hand, if the hospital has ESPN (if she's in the US), it's Euro 2012 for the next few weeks. Maybe soccer could strike a balance between interesting enough to hold her attention but disinteresting enough (if she has no applicable national allegiance) to not be stressful. The commentary is pretty bad, so she's not likely to learn that much about soccer, but I find it soothing to watch as a neutral.
Somewhere there are activities that strike a balance between not requiring mental energy or concentration (as hers is presumably shot) and not being so boring that she just goes straight back to worrying.
Knitting? Crocheting? Makes books on tape or TV much less boring and is relaxing.
posted by hoyland at 6:43 PM on June 10, 2012 [4 favorites]
Mod note: Removed the links, feel free to put them in your profile. Thanks.
posted by restless_nomad (staff) at 6:53 PM on June 10, 2012
posted by restless_nomad (staff) at 6:53 PM on June 10, 2012
Best answer: Charity Tillemann-Dick is a young opera singer who has now had two double lung transplants. She talks about this in a TED talk here, and keeps a blog, along with her sisters. You and your sister might find some comfort and some companionship in her stories, as well as an example of someone who has come through this safely and successfully. Best of luck to your sister.
posted by judith at 6:55 PM on June 10, 2012 [3 favorites]
posted by judith at 6:55 PM on June 10, 2012 [3 favorites]
Maybe some of those guided meditation podcasts? Or even a visit from, I guess, a yoga teacher or a meditation teacher to do a meditation/relaxation exercise with her?
posted by Snarl Furillo at 7:38 PM on June 10, 2012
posted by Snarl Furillo at 7:38 PM on June 10, 2012
Perhaps mind numbing (hopefully anxiety numbing?) puzzle-ish games, if passing the time is in order?
This one (globetrotter) has just the right level of addicting, straight memorization/geography based reward center hacking to make me be able to zone out.
Wishing you and your sister the best.
posted by skrozidile at 7:51 PM on June 10, 2012
This one (globetrotter) has just the right level of addicting, straight memorization/geography based reward center hacking to make me be able to zone out.
Wishing you and your sister the best.
posted by skrozidile at 7:51 PM on June 10, 2012
Best answer: Distraction: TV, movies, books, silly games on a phone/iPad/laptop, chatting with friends/family
Relaxation: praying, body scan meditation*, progressive relaxation, guided or unguided** imagery
* Personally I find that some body-awareness relaxation techniques can be more anxiety-provoking when I feel like something is going wrong with my body, but I know they work well for a lot of people.
** By "unguided imagery" I just mean imagining in overwhelming detail, the experience of being somewhere else. Pick somewhere relaxing, and imagine the sensations, scents, tastes, sounds, and imagery of being there. Imagine the emotions and thoughts that go along with being there. It helps to close your eyes and imagine yourself laying in the same position that you're in, in the real world. My 3 go-to spots are the massage table at an imaginary super-luxury spa resort (imagining a massage in detail is actually almost as relaxing as getting one), a beach from my honeymoon, and that grassy hill from the Windows default background.
Maybe it would feel weird to suggest this kind of thing to her, but maybe you can print out any useful answers you get here and bring them for her.
Also, some hospitals these days have massage therapists on staff, but a lot of nurses still forget to offer this service because they're busy handing out meds and coordinating treatments. It's worth asking whether her facility has anything like that available. Talking to the chaplains can be great too, even if she's not religious. They're trained to help people relax through difficult times, using a variety of techniques that don't have to involve God. Plus it can be nice to talk to somebody about things you don't want to bring up with family/friends, whether it's fear or anger or gross body-related stuff.
Good luck to your sister.
posted by vytae at 8:14 PM on June 10, 2012 [2 favorites]
Relaxation: praying, body scan meditation*, progressive relaxation, guided or unguided** imagery
* Personally I find that some body-awareness relaxation techniques can be more anxiety-provoking when I feel like something is going wrong with my body, but I know they work well for a lot of people.
** By "unguided imagery" I just mean imagining in overwhelming detail, the experience of being somewhere else. Pick somewhere relaxing, and imagine the sensations, scents, tastes, sounds, and imagery of being there. Imagine the emotions and thoughts that go along with being there. It helps to close your eyes and imagine yourself laying in the same position that you're in, in the real world. My 3 go-to spots are the massage table at an imaginary super-luxury spa resort (imagining a massage in detail is actually almost as relaxing as getting one), a beach from my honeymoon, and that grassy hill from the Windows default background.
Maybe it would feel weird to suggest this kind of thing to her, but maybe you can print out any useful answers you get here and bring them for her.
Also, some hospitals these days have massage therapists on staff, but a lot of nurses still forget to offer this service because they're busy handing out meds and coordinating treatments. It's worth asking whether her facility has anything like that available. Talking to the chaplains can be great too, even if she's not religious. They're trained to help people relax through difficult times, using a variety of techniques that don't have to involve God. Plus it can be nice to talk to somebody about things you don't want to bring up with family/friends, whether it's fear or anger or gross body-related stuff.
Good luck to your sister.
posted by vytae at 8:14 PM on June 10, 2012 [2 favorites]
What SMPA said. Someone in my life has crippling anxiety. The first best solution ever? Learning to play Magic the Gathering.
When he gets anxious and panicky, he can now delve mentally into MtG thoughts - how he wants to create new decks or improve his existing. And since it requires so much thought and consideration, his mind usually stays out of the anxiety for a while.
Many times when he feels himself freaking out and losing control, he'll try to just focus on something new and learn about it. Computer/video games are great for this, too (provided they aren't frustratingly difficult).
I don't know if your sister's mind is geared towards that type of unplugging, but it's worth a try since she can't do anything physical.
posted by kpetrich at 8:40 PM on June 10, 2012
When he gets anxious and panicky, he can now delve mentally into MtG thoughts - how he wants to create new decks or improve his existing. And since it requires so much thought and consideration, his mind usually stays out of the anxiety for a while.
Many times when he feels himself freaking out and losing control, he'll try to just focus on something new and learn about it. Computer/video games are great for this, too (provided they aren't frustratingly difficult).
I don't know if your sister's mind is geared towards that type of unplugging, but it's worth a try since she can't do anything physical.
posted by kpetrich at 8:40 PM on June 10, 2012
Best answer: This a situation fraught with anxiety for both you & your sister. I know it might sound hippy-dippy, but there is something to be said for aromatherapy and music therapy. In terms of aromatherapy, lavender is very relaxing & those eye pillows stuffed with lavender can really be soothing. Citrus tends to be energizing, not in an "I'll tackle the world" way, but just a renewed burst of energy/optimism way. I'd let her favorite smells dictate those choices, though. Also, music she can lose herself in and/or music that creates a soothing atmosphere is always good. I don't know how much she is into being touched right now, but light scalp, hand, feet, shoulder, or really anywhere massage with nice feeling & smelling lotion can do wonders. Lastly, as everyone has said, stories that can distract & captivate her are a genuine plus. Keep in mind stories can be books, TV, film, theater, music, & random internet things (blogs, viral videos, etc). It's all about indulging and soothing the other senses in the hope of keeping her minds off things.
Everyone works differently, so stress reduction varies from person to person, but sounds, smells, & touch almost always makes a tremendous difference. Also, I am someone who has lost myself in stories (in all the forms I mentioned) for my entire life, so if she can pay attention & immerse herself in one that might make a real difference. Personally, I think TV shows with many seasons are great for this. The Dr. Who reboot of the 2000s is super compelling, and this is coming from someone who has a love/hate/very picky relationship with sci-fi. Laslty, there is a game called TripleTown that I have found incredibly addictive when I play it on my iPhone, so something like that may do just the trick. Best of luck to her & you!
posted by katemcd at 9:44 PM on June 10, 2012 [1 favorite]
Everyone works differently, so stress reduction varies from person to person, but sounds, smells, & touch almost always makes a tremendous difference. Also, I am someone who has lost myself in stories (in all the forms I mentioned) for my entire life, so if she can pay attention & immerse herself in one that might make a real difference. Personally, I think TV shows with many seasons are great for this. The Dr. Who reboot of the 2000s is super compelling, and this is coming from someone who has a love/hate/very picky relationship with sci-fi. Laslty, there is a game called TripleTown that I have found incredibly addictive when I play it on my iPhone, so something like that may do just the trick. Best of luck to her & you!
posted by katemcd at 9:44 PM on June 10, 2012 [1 favorite]
Along the lines of what judith recommended, here's a blog by someone I know and admire who had a double lung transplant. She's inspiring. Knowing what to expect post-op might be comforting? There are also the Huff n Puff forums to explore.
posted by peagood at 10:34 PM on June 10, 2012
posted by peagood at 10:34 PM on June 10, 2012
she is terrified that at any minute her world is going to end.
In what way, exactly? Is she afraid she may die before or during a transplant? Because it depends on what kind of person she is but quite often people saying "You're not going to die, it will be okay" when you really might die now is not at all reassuring and in no way decreases legitimate anxiety.
Faced with vastly less serious surgery, the only thing that helped me personally feel better was a DNR, a living will, and a standard will. The discussions required to arrive at all of those pieces was very therapeutic and gave me a lot of control. I also discussed very plainly my wishes in case I did die, and that was useful, too.
posted by DarlingBri at 11:47 PM on June 10, 2012 [1 favorite]
In what way, exactly? Is she afraid she may die before or during a transplant? Because it depends on what kind of person she is but quite often people saying "You're not going to die, it will be okay" when you really might die now is not at all reassuring and in no way decreases legitimate anxiety.
Faced with vastly less serious surgery, the only thing that helped me personally feel better was a DNR, a living will, and a standard will. The discussions required to arrive at all of those pieces was very therapeutic and gave me a lot of control. I also discussed very plainly my wishes in case I did die, and that was useful, too.
posted by DarlingBri at 11:47 PM on June 10, 2012 [1 favorite]
Best answer: Immersive distractions and future planning?
By immersive, something addictive and absorbing but not mentally demanding - I am currently reading every single Agatha Christie novel she's written. Previously I have played Civilization (the ipad version hits a lovely sweet spot of difficulty/playability), knit mildly difficult large things, planned house moving and renovation, read other authors (Maeve Binchy does good comforting doorstoppers, Terry Pratchett, the Flashman novel, Lindsey Davis, Elizabeth George are some other particular ones I was able to delve into.) If she can't move much, the audio versions are good, or podcasts. If she speaks another language, something very light in that language would be engaging, e.g. Tintin in French. World of Warcraft?
Future planning - what will she do in the years after the surgery? If she wants to travel, planning itineraries and researching vacations. If she's going to be healthier, picking up some new activity, looking up tennis lessons and hiking.
I'm like DarlingBri in that thinking through openly and seriously all the worst choices and planning them out makes me feel far more in control and prepared. But it's not for everyone. Only your sister (hopefully the hospital has someone who can actually sit and talk to her and help her figure it out) knows what will help. She may want to completely escape thinking about the scary stuff. You have to ask her.
Massage is incredibly good for stress. If her doctors allow it, can she get a therapeutic massage? I'm sure you could get a licensed masseur to come in regularly. Otherwise, can you or a relative give her a daily footrub sort of thing? It sounds daft, but it is very comforting and calming.
posted by viggorlijah at 1:28 AM on June 11, 2012
By immersive, something addictive and absorbing but not mentally demanding - I am currently reading every single Agatha Christie novel she's written. Previously I have played Civilization (the ipad version hits a lovely sweet spot of difficulty/playability), knit mildly difficult large things, planned house moving and renovation, read other authors (Maeve Binchy does good comforting doorstoppers, Terry Pratchett, the Flashman novel, Lindsey Davis, Elizabeth George are some other particular ones I was able to delve into.) If she can't move much, the audio versions are good, or podcasts. If she speaks another language, something very light in that language would be engaging, e.g. Tintin in French. World of Warcraft?
Future planning - what will she do in the years after the surgery? If she wants to travel, planning itineraries and researching vacations. If she's going to be healthier, picking up some new activity, looking up tennis lessons and hiking.
I'm like DarlingBri in that thinking through openly and seriously all the worst choices and planning them out makes me feel far more in control and prepared. But it's not for everyone. Only your sister (hopefully the hospital has someone who can actually sit and talk to her and help her figure it out) knows what will help. She may want to completely escape thinking about the scary stuff. You have to ask her.
Massage is incredibly good for stress. If her doctors allow it, can she get a therapeutic massage? I'm sure you could get a licensed masseur to come in regularly. Otherwise, can you or a relative give her a daily footrub sort of thing? It sounds daft, but it is very comforting and calming.
posted by viggorlijah at 1:28 AM on June 11, 2012
(Sorry, I did not mean to imply your sister won't have the very best recovery; it's just that some people really need to explore all possible outcomes, and perhaps she is one of those people. I wish you and your family the very best in getting through this!)
posted by DarlingBri at 6:12 AM on June 11, 2012
posted by DarlingBri at 6:12 AM on June 11, 2012
Response by poster: Responding to some points made (reading upwards):
* First of all, thank you for your kind and helpful words, each of you. =) We're very optimistic and so are the medical team. I'm marking a couple of "best answers" but by no means is that indicative of better or worse, there are a lot of good tips here.
* Didn't take it that way Darling... =)
* I should mention that the ward has a man who comes around and attends to the mental state of each patient with calming words and light touch. My sister does benefit from this. She also asked for a priest at one point, not because she is hyper-religious, but she drew strength from his tranquility and peace.
* Her terror about her world ending is more immediate. She worries about the tubes carrying her blood into and out of the machine, plus she tries to attune herself to the monitor machines beeping away out of sight behind her. The nurses are fabulous and project a picture of calm, but it's like having fear of flying. You can rationally understand that the plane and the practice of flying are both safe, but your crazy amygdala keeps pumping out stress hormones regardless.
* Thank you katemcd for tips on smell, touch etc. I will ask about that, however it is a very controlled and intense environment where she is (transplant ICU). I don't think they allow aromatherapy but I will ask.
* I should have mentioned that she gets tired easily, in part because she is still breathing a bit with her dud lungs and the struggle to do that constantly is taxing (though good for her recovery). Though she has access to an iPad and iPhone, she doesn't spend tons of time on them, but they are available to her when needed. Warcraft, Magic etc. would be great for me but she's not really into that stuff.
* I guess the issue is this -- she has an overactive, high-achieving brain that is unable to relax and let go. When she's on a plane, it's a worry-fest from takeoff to landing. She acts like there aren't paid staff like the pilots -- she has to be the guard-dog. So when it comes to her own situation, she finds it hard to disengage.
* If you have new stuff or whatever to add, please do. Thank you again.
posted by teedee2000 at 8:19 AM on June 11, 2012
* First of all, thank you for your kind and helpful words, each of you. =) We're very optimistic and so are the medical team. I'm marking a couple of "best answers" but by no means is that indicative of better or worse, there are a lot of good tips here.
* Didn't take it that way Darling... =)
* I should mention that the ward has a man who comes around and attends to the mental state of each patient with calming words and light touch. My sister does benefit from this. She also asked for a priest at one point, not because she is hyper-religious, but she drew strength from his tranquility and peace.
* Her terror about her world ending is more immediate. She worries about the tubes carrying her blood into and out of the machine, plus she tries to attune herself to the monitor machines beeping away out of sight behind her. The nurses are fabulous and project a picture of calm, but it's like having fear of flying. You can rationally understand that the plane and the practice of flying are both safe, but your crazy amygdala keeps pumping out stress hormones regardless.
* Thank you katemcd for tips on smell, touch etc. I will ask about that, however it is a very controlled and intense environment where she is (transplant ICU). I don't think they allow aromatherapy but I will ask.
* I should have mentioned that she gets tired easily, in part because she is still breathing a bit with her dud lungs and the struggle to do that constantly is taxing (though good for her recovery). Though she has access to an iPad and iPhone, she doesn't spend tons of time on them, but they are available to her when needed. Warcraft, Magic etc. would be great for me but she's not really into that stuff.
* I guess the issue is this -- she has an overactive, high-achieving brain that is unable to relax and let go. When she's on a plane, it's a worry-fest from takeoff to landing. She acts like there aren't paid staff like the pilots -- she has to be the guard-dog. So when it comes to her own situation, she finds it hard to disengage.
* If you have new stuff or whatever to add, please do. Thank you again.
posted by teedee2000 at 8:19 AM on June 11, 2012
People (like your sister, stuck in limbo) need to do constructive things. Does your sister knit? Crochet?
I'm serious.
People I've nursed have made beautiful things -- dolls, toys, clothing, rugs -- for charities or fund raising while stuck in slow stream hospital environments.
posted by de at 9:08 AM on June 12, 2012
I'm serious.
People I've nursed have made beautiful things -- dolls, toys, clothing, rugs -- for charities or fund raising while stuck in slow stream hospital environments.
posted by de at 9:08 AM on June 12, 2012
This thread is closed to new comments.
You should also check to see if there are any therapist/psychiatrist types who can give her a buzz - the local hospital here has some on staff who are meant to work with cancer/transplant/heart patients, and they reportedly/unexpectedly focus a lot on managing anxiety and fear.
posted by SMPA at 6:30 PM on June 10, 2012 [2 favorites]