Dr. Heitzman,
It has been a long time since our last visit. The primary reason is that contrary to popular myth, at least in my case, misery does not love company. It just became too difficult for me to continue. Maybe I can change that.
Briefly, here is my current status :
Breathing problems, specifically, shortness of breath, though my oxygen saturation remains at 96 to 98%. On several occasions I've tried to use the Trilogy breathing apparatus but it blows air too forcefully, even on the lowest setting, for me to handle. Unaided, if I yawn, as a consequence I cannot inhale for a period of time until my diaphram catches up. Generally, breathing is manageable, but I feel it is beginning to be a more consistent issue.
Gut ache. Likely stress related. Since my muscles are failing, it seems every effort I make at moving relates directly to my stomach. Add a slowed digestive system and the problem is worsened. Chronic.
Excess saliva, yes. Not always.
Trouble swallowing, yes. Aspiration, rarely.
Most foods pureed. Not all.
Thickened liquid, no.
My neck muscles are very weak. Balance is a fine line.
For some reason I can still lock my knees out and maintain a stand, though my core is shot. Amy can still lift me and transfer me.
Weight loss, obviously. I was never heavier than in the year following my diagnosis. It was not natural to be so heavy. Though I'm too thin today, it is due to my failure to ingest enough calories to put on weight. Thus, we seem to have no recourse but to get a feeding tube. I'm more than a little fearful of any kind of anesthetic. It terrifies me.
I have an annoying nerve activity in my right leg, originating on the outside of my thigh about six inches above my knee and radiating down to my foot. Occasionally my foot jumps. This problem occurs mostly at night and wakes me like clockwork every 90 minutes.
I need to know what I can do to address these problems. Thank you.
Dr.Viroslav,
Please let me tell you my issues. Since I'm unable to talk this is the best way to communicate.
Though my oxygen saturation remains high, I'm almost constantly short of breath. I only sleep for an hour or so at a time, and when I awake I'm almost panicked with the need for more air. On many occasions I've tried to use the Trilogy breathing apparatus and can't function, can't communicate with my wife. Neither the full mask or the nose pillows work for me.
I can't cough up phlegm and sometimes it takes my breath. Cough assist is worthless since I can't breathe well enough or deeply enough.
On occasion I will involuntarily yawn and for a time after I feel like I'm suffocating while my diaphragm catches up.
My o2 level hovers between 96 and 98%. My blood gasses are normal as of my last ER visit where they hurt me with a deep arterial stick without warning.
I need to have a feeding tube installed because I'm having problems swallowing. Dr Heitzman said you could coordinate that for me.
If there is no way for me to use the Trilogy, I'm interested in learning more about a vent. What limitations would I incur? How invasive is it? What if I hate it? Is it permanent? What if I opt out? Is there a way to die without suffocating?
Please excuse my candor. I'm not typical in my writing.
One last thing. I'm terrified at the thought of anesthetic. I'm having problems breathing with no stress as it is. Please make me feel more at ease. Thank you.
Yes, I wrote this with my eyes.
It has been a long time since our last visit. The primary reason is that contrary to popular myth, at least in my case, misery does not love company. It just became too difficult for me to continue. Maybe I can change that.
Briefly, here is my current status :
Breathing problems, specifically, shortness of breath, though my oxygen saturation remains at 96 to 98%. On several occasions I've tried to use the Trilogy breathing apparatus but it blows air too forcefully, even on the lowest setting, for me to handle. Unaided, if I yawn, as a consequence I cannot inhale for a period of time until my diaphram catches up. Generally, breathing is manageable, but I feel it is beginning to be a more consistent issue.
Gut ache. Likely stress related. Since my muscles are failing, it seems every effort I make at moving relates directly to my stomach. Add a slowed digestive system and the problem is worsened. Chronic.
Excess saliva, yes. Not always.
Trouble swallowing, yes. Aspiration, rarely.
Most foods pureed. Not all.
Thickened liquid, no.
My neck muscles are very weak. Balance is a fine line.
For some reason I can still lock my knees out and maintain a stand, though my core is shot. Amy can still lift me and transfer me.
Weight loss, obviously. I was never heavier than in the year following my diagnosis. It was not natural to be so heavy. Though I'm too thin today, it is due to my failure to ingest enough calories to put on weight. Thus, we seem to have no recourse but to get a feeding tube. I'm more than a little fearful of any kind of anesthetic. It terrifies me.
I have an annoying nerve activity in my right leg, originating on the outside of my thigh about six inches above my knee and radiating down to my foot. Occasionally my foot jumps. This problem occurs mostly at night and wakes me like clockwork every 90 minutes.
I need to know what I can do to address these problems. Thank you.
Dr.Viroslav,
Please let me tell you my issues. Since I'm unable to talk this is the best way to communicate.
Though my oxygen saturation remains high, I'm almost constantly short of breath. I only sleep for an hour or so at a time, and when I awake I'm almost panicked with the need for more air. On many occasions I've tried to use the Trilogy breathing apparatus and can't function, can't communicate with my wife. Neither the full mask or the nose pillows work for me.
I can't cough up phlegm and sometimes it takes my breath. Cough assist is worthless since I can't breathe well enough or deeply enough.
On occasion I will involuntarily yawn and for a time after I feel like I'm suffocating while my diaphragm catches up.
My o2 level hovers between 96 and 98%. My blood gasses are normal as of my last ER visit where they hurt me with a deep arterial stick without warning.
I need to have a feeding tube installed because I'm having problems swallowing. Dr Heitzman said you could coordinate that for me.
If there is no way for me to use the Trilogy, I'm interested in learning more about a vent. What limitations would I incur? How invasive is it? What if I hate it? Is it permanent? What if I opt out? Is there a way to die without suffocating?
Please excuse my candor. I'm not typical in my writing.
One last thing. I'm terrified at the thought of anesthetic. I'm having problems breathing with no stress as it is. Please make me feel more at ease. Thank you.
Yes, I wrote this with my eyes.
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