Last night at dialysis my back started cramping (boy, I hate that!) so the tech turned off the UF and gave me some saline. Moments after he pushed the saline, I started having trouble breathing. It’s like a pressure inside that keeps a full breath from fully filling my lungs. I raised the bed to sit up and in 5-10 minutes I was breathing normally again. This has happened before when epo or iron have been added to my line. The techs/nurse offer to hook me up to oxygen, but the trouble passes on its own eventually and it doesn’t feel like oxygen would help anyway.
Do you internalize stress? If that was happening to me I would think if I was getting stressed. Either by the cramping or by seeing something getting injected into me. Maybe seeing the injection focuses the mind on the fact that you are in a vulnerable position - hooked up to a machine with your blood circulating outside your body. Stress is understandable. This is just a guess because I can’t think of what else those three events - getting saline, EPO and iron - have in common.
I sometimes internalize stress - often at work - and I’ll get a kink in my neck - maybe for days. It helps me sometimes to vocalize that I am feeling stressed “I don’t know how I’ll meet these deadlines”, “no one will show up at the kidney Expo” or whatever. Not that I’m saying I want help neccessarily but just putting voice to fears can relieve my stress. Sometimes I can’t put my finger on what is stressing me out until after the fact - oh it was that Mom thing, etc…
Sometimes when you get saline, such as during rinseback, but also as you have experienced, when given a saline flush during treatment, you get a little bolus of saline going through, and it feels like you can’t catch a breath until the water gets past your heart and lungs and diffuses into the circulation. This is pretty common. It passes soon, but you can make it worse by getting a little anxious when you feel it (and who wouldn’t if you don’t know why it happens). Not everybody feels it, but many do. This is one reason why a saline infusion is never more than 200ml at a time when you’re doing it at home. It’s kind of the same when you get the venofer, but since venofer is only a few ml at a time, what you are really feeling is the peculiar taste. If too much is given at once, you get a drop in blood pressure which you might feel. EPO shouldn’t since it’s such a tiny amount.
You would think they would explain that to their patients, but what can you do?
Thanks guys. Knowing the cause, and knowing it’s not unusual is a huge help. I really don’t think anxiety is the problem, but I’ll definitely keep it in mind and try some relaxation exercises. This has happened often enough that I know it will pass.
As for Pierre’s comment on the staff not educating me, well… Whenever I ask about this breathing problem, they never given me any indication that they’ve seen this reaction before or that they know anything about it. But then, that’s how they are with most questions - total blank wall. I wonder if this non-responsiveness is formally taught and encouraged, or self-defense learned over time?
As for Pierre’s comment on the staff not educating me, well… Whenever I ask about this breathing problem, they never given me any indication that they’ve seen this reaction before or that they know anything about it. But then, that’s how they are with most questions - total blank wall. I wonder if this non-responsiveness is formally taught and encouraged, or self-defense learned over time?
Could be either or they do not have enough training to know why this occurs. I have found that staff in all units I have been in are undertrained. Several have been honest enough to tell me their training only goes so far. This makes for insecure staff who put up a false front. They get out there everyday and do their job, but have to bluff their way through. Or, because their training only goes so far, most think that they are competently trained and simply give patients the canned responses the corp or management tells them to say. It is very sad, but the head people, “in my personal experience” and I’ve heard many, many patients from all over say the same, do not want staff or patients to be educated and fully aware otherwise they would know they are getting the short end of the stick. In time, patients and staff do learn more through trial and error, but patients are hurt along the way. Staff are hurt, too, in this system, as most are in this profession because their gift is to care for patients, but surely they must feel frustrated when they are not given competent ed. and training to do their jobs, the time to educate patients and good leadership/support from corp/mangagement. It seems that staff are caught up in corps/management’s dishonest practices putting them at odds with patient care.
I have heard there are good units out there where these sorts of issues do not occur. I have not had the good fortune of being in one of them. The units I have been in I would rate from zero to 7, so I know it is possible for some to be better than others. My opinion is, a unit will be as good as the head people guide it to be, and unless a unit is really top notch, one is far safer in home hemo.