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I will Tillie. He certainly knows about you. Lol!
Worried about Steve
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soonerwife
Very helpful member
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That is great news Deb! So glad that Steve listened and is moving forward.
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Thanks TC ☺
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Deb, it's always wonderful to read good news. I'm so pleased for you. Matt doesn't visit here, but he also listens when I relay things I've read here.
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Deb, glad to hear Steve has agreed to the PEG consult. As I said before I can imagine this is a difficult step psychologically for a PALS, but hopefully it will make him feel better in the long run. Glad it worked out and good luck.
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We have an appointment with our general doctor for his blood pressure tomorrow. Weds is the consult for the peg. Does anyone have suggestions on questions and info i should find out?
Today has been a very bad day for me. Watching Steve breathing hard, not being able to finish his food and Mike moved his bi-pap in the living room while I was at work. Its all becoming to real and my heart is breaking. I know I need to be strong in front of him because the very thought of any progression stresses him out and makes both his breathing and blood pressure worse.
I don't seem to want to catch up with this frigging disease. I hate knowing that big decisions and heart break are around the corner.
Whats even more infuriating is...I can't find my big girl panties right now. They are most likely lost with everything else I can't find right now.
Today has been a very bad day for me. Watching Steve breathing hard, not being able to finish his food and Mike moved his bi-pap in the living room while I was at work. Its all becoming to real and my heart is breaking. I know I need to be strong in front of him because the very thought of any progression stresses him out and makes both his breathing and blood pressure worse.
I don't seem to want to catch up with this frigging disease. I hate knowing that big decisions and heart break are around the corner.
Whats even more infuriating is...I can't find my big girl panties right now. They are most likely lost with everything else I can't find right now.
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I don't remember if Steve is already on BP meds, but generally you want not to add new BP drugs that affect the central nervous system (e.g. beta blockers) if he is not already on one. And you don't want to overload him if the BP increase is a temporary artifact of the breathing and/or anxiety, as that could make him dizzy and fuzzy mentally. At 130/90, honestly, if that is his peak (take it when he is red-faced) unless he has a history of stroke/MI, I wouldn't be stressing or changing meds.
So as you've read, the best "PEG" is a "RIG" and so you want to be in radiology, in experienced hands. If you have any doubts, you can post or PM the name of the radiologist you are referred to.
So as you've read, the best "PEG" is a "RIG" and so you want to be in radiology, in experienced hands. If you have any doubts, you can post or PM the name of the radiologist you are referred to.
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Thanks Laurie. I am so very worried right now. He is getting very anxious, did not sleep much last night and after hearing from the doctor about his blood pressure, he is worried about his heart.
He has a appointment tomorrow at GP for his blood pressure. They have not seen him since his diagnosis. Should I be worried about blood pressure meds? His blood pressure has been 140/ 96 and 132/94.
I will find out the name of who his nuerologist referred him to and post tomorrow morning. I am hoping he does rigs and his qualified. Laurie I am so thankful to you and everyone on here. I am trying to avoid going into panic mode.
He has a appointment tomorrow at GP for his blood pressure. They have not seen him since his diagnosis. Should I be worried about blood pressure meds? His blood pressure has been 140/ 96 and 132/94.
I will find out the name of who his nuerologist referred him to and post tomorrow morning. I am hoping he does rigs and his qualified. Laurie I am so thankful to you and everyone on here. I am trying to avoid going into panic mode.
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Also, the shakes he eats twice a day have icecream which have a lot of suger. Can that be effecting his blood pressure?
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Laurie, he is not on any BP meds. He only takes one medication and thats 50mg of Sertraline.
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He has been referred to Dr. Esmail M. Elwazir/Gastroenterology, in Dallas.
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A gastroenterologist will do the procedure in an endoscopy suite, not radiology. In fact, the doc you were referred to has a financial interest in a multi-site endoscopy practice (Dallas Endoscopy Centers). Is it the ALS clinic that referred you? Certainly, you can meet with him and see what you think (ask about RIGs in ALS and you may get an idea about how much he knows re ALS). But you have no obligation to buy, as they say.
Yes, sugar can put a greater demand on the heart...but shouldn't affect diastolic pressure. I buy Breyers ice cream, which has mostly natural ingredients with less sugar.
So the diastolic BP has been higher than 90 in the measurements you report -- that's of some concern and so they may well suggest he start a BP med. I would ask for a calcium channel blocker like diltiazem ER (24-hour formulations are less likely to cause side effects) if he has no contraindications to one. "Normal" people are often started with a diuretic but that's not recommended in ALS. Ironically, feeling anxious about his heart is of course likely to increase his BP and pulse. Can't remember how long he's been on the SSRI?
Re sertaline, different SSRIs work for different people, so after several weeks if it doesn't seem the right thing, ask for another. Some SSRIs are more sedating and some are more energizing. Zoloft is somewhere in between.
Yes, sugar can put a greater demand on the heart...but shouldn't affect diastolic pressure. I buy Breyers ice cream, which has mostly natural ingredients with less sugar.
So the diastolic BP has been higher than 90 in the measurements you report -- that's of some concern and so they may well suggest he start a BP med. I would ask for a calcium channel blocker like diltiazem ER (24-hour formulations are less likely to cause side effects) if he has no contraindications to one. "Normal" people are often started with a diuretic but that's not recommended in ALS. Ironically, feeling anxious about his heart is of course likely to increase his BP and pulse. Can't remember how long he's been on the SSRI?
Re sertaline, different SSRIs work for different people, so after several weeks if it doesn't seem the right thing, ask for another. Some SSRIs are more sedating and some are more energizing. Zoloft is somewhere in between.
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Thanks for your help Laurie. So are you saying that he is the correct type of specialist to do either the peg or rig? Yes, Dr Heitzsman his clinic doctor referred him.
He goes to the GP about his BP today. I will discuss your suggestions with his doctor. I don't think he knows much about ALS. Steve has been on the Sertaline for about a month.
He goes to the GP about his BP today. I will discuss your suggestions with his doctor. I don't think he knows much about ALS. Steve has been on the Sertaline for about a month.
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