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Post by CarolinaGirl71 on Jan 4, 2020 2:17:51 GMT
Update: DH is not out of the woods yet. Went to his primary doctor and they were aghast at how weak he was. To hear his doctors and nurses say that he's so pale and weak was worry some. His breathing has been terrible. I think he left the hospital too soon. He hasn't been able to sleep bc of the breathing (no inhalers helped), and I've been up & on high alert with him. He's so exhausted. It breaks my heart!! They gave him a steroid injection fotr he breathing, suggested he go back to the hospital, but he just wanted to come home. I keep reminding him that I'm not a nurse! I'm checking his stats and I have to bring him to the ER if his heart rate is over 120. I just need him to get better with this. I think we'll both sleep for a few days once he's better! I'm waiting... I'm so sorry you've been going through this. I'm just reading the first post (and the updates) for the first time - wasn't online much during the holidays. Hoping you are both better soon and able to get some rest and recovery.
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Post by mom on Jan 4, 2020 3:24:45 GMT
oh that is a scary update. Hows his heart rate? I know he doesn't want to go to the hospital but man, I would surely be trying to talk him into it. I will be thinking of you and him!
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Post by quinlove on Jan 4, 2020 3:31:11 GMT
Sending love and hugs to you love. I know you feel overwhelmed, but think about all your Pea friends right there with you in spirit
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Post by librarylady on Jan 4, 2020 3:32:16 GMT
Continued prayers for the two of you.
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FurryP
Drama Llama
To pea or not to pea...
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Post by FurryP on Jan 4, 2020 8:47:27 GMT
Sorry to read he is not out of the woods yet. Hoping for improvement for him ASAP!
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Post by LavenderLayoutLady on Jan 4, 2020 10:03:17 GMT
Many (((Hugs)))
I know he doesn't want to go back, but if the doctor recommended going to the hospital, I really think that is the best thing to do.
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Deleted
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Post by Deleted on Jan 4, 2020 13:00:08 GMT
Hoping your DH is doing better today. (((Hugs)))
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Post by LisaDV on Jan 4, 2020 13:36:06 GMT
Sending you hugs and prayers. Hope there is a great improvement today.
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Post by MZF on Jan 4, 2020 14:56:09 GMT
I'm sorry to read the latest update isn't so good. Sending healing thoughts your way (hug)
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ddly
Pearl Clutcher
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Jul 10, 2014 19:36:28 GMT
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Post by ddly on Jan 4, 2020 18:23:26 GMT
I'm sorry about the set back. Continued thoughts and prayers for you and DH.
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Post by Linda on Jan 4, 2020 18:30:56 GMT
((((Hugs)))) and prayers
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Post by miominmio on Jan 4, 2020 18:45:24 GMT
(((Hugs)))
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Post by scrapmaven on Jan 4, 2020 20:13:59 GMT
How are you both doing today? I sincerely hope that he'll agree to go to the hospital if he still needs it. You are not healthy enough to be a full time caretaker. Would it be possible to move back to New York w/your family? Would they be in a position to help make it happen? Support will make this so much more doable. ((((HUGS)))).
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Post by christine58 on Jan 4, 2020 20:36:47 GMT
jenjie Have you heard anything??
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kate
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Post by kate on Jan 4, 2020 21:01:36 GMT
Thinking of you, @bergdorfblonde, and praying for good news for you and DH.
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Post by jenjie on Jan 4, 2020 21:04:21 GMT
jenjie Have you heard anything?? No I haven’t. I just checked her FB too and last I saw was yesterday where they were on standby re going to the hospital. I’m walking out the door for the evening in 10 mins. I’ll reach out later tonight, or tomorrow if I get home too late.
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Deleted
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Post by Deleted on Jan 4, 2020 22:13:48 GMT
Oh dear, so no progress yet. I’m not medically trained and I don’t know what is available to you but here if he was struggling to breathe and wanted to stay home he’d possibly be given oxygen to breathe. Is that a possibility, would it help? I agree. Fred was sent home with oxygen. Is he able to get that? @bergdorfblonde I’m so sorry things are not letting up. DH used to be on oxygen when we lived in NJ. When we moved here they didn't want him to be on it. They said that his oxygen levels had to be under 88 consistently to qualify for it. Dumb! When we were just in the hospital they had him on it and I think it helped. He's a heart and lung patient. Yeesh....
I'll get to the rest of the posts, but he's FINALLY feeling some relief, so that steroid shot must have helped him breathe better. He got decent sleep last night and his color is much better. I'm still on top of his stats though! xo
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Deleted
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Post by Deleted on Jan 4, 2020 22:15:30 GMT
oh that is a scary update. Hows his heart rate? I know he doesn't want to go to the hospital but man, I would surely be trying to talk him into it. I will be thinking of you and him! Thank you. His heart rate (at rest) is always between 98-125. They said if it's 140 again to go right back in. I'm watching his blood pressure too, only because his new meds are lowering it right now. Have to be careful that he doesn't faint or feel too weak.
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Deleted
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Post by Deleted on Jan 4, 2020 22:22:08 GMT
jenjie Have you heard anything?? No I haven’t. I just checked her FB too and last I saw was yesterday where they were on standby re going to the hospital. I’m walking out the door for the evening in 10 mins. I’ll reach out later tonight, or tomorrow if I get home too late. jenjie christine58....... I'm so sorry I worried you guys! Jen, you could text me anytime. I have my cellphone with me at all times (as sucky as it is!).
DH had a much better night and his breathing improved. For some reason his heart rate is still above 100. No idea why. This is at COMPLETE rest. But he looks much better and feels better. I know he's not out of the woods yet.
ITA that he should have gone back to the hospital. He's a tough one to deal with sometimes and he just wanted to be home. Everyone is right--I'm worn out and I'm NOT capable of handling medical care for him. I could just monitor him and call 911, which is what I've been doing.
I got some sleep last night and have some energy today, and he's actually on Facebook right now.......
Thank you all for your continued support. Even my family gets sick of hearing our constant emergency alerts! Today is a better day though. (I'm going through my Pea-box to sort things! It's HUGE, and I didn't even begin thanking people yet. I/we are SO very grateful though. Our lives are easier right now due to the Peas!!! xo)
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Post by mom on Jan 5, 2020 2:57:43 GMT
oh that is a scary update. Hows his heart rate? I know he doesn't want to go to the hospital but man, I would surely be trying to talk him into it. I will be thinking of you and him! Thank you. His heart rate (at rest) is always between 98-125. They said if it's 140 again to go right back in. I'm watching his blood pressure too, only because his new meds are lowering it right now. Have to be careful that he doesn't faint or feel too weak. Glad to see he is looking better and you got some rest!
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Deleted
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Post by Deleted on Jan 5, 2020 3:22:50 GMT
Thank you. His heart rate (at rest) is always between 98-125. They said if it's 140 again to go right back in. I'm watching his blood pressure too, only because his new meds are lowering it right now. Have to be careful that he doesn't faint or feel too weak. Glad to see he is looking better and you got some rest! Thanks so much! I got a few things done today, and he was up and moving around. Now he's exhausted and we're heading to bed. Nite all!!
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Post by Bobomommy on Jan 5, 2020 3:26:10 GMT
I’ve been out of cell range ver the holidays and just saw this. I’m glad he’s feeling better and getting around a bit. Prayers for you both to sleep well tonight.
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Post by jenjie on Jan 5, 2020 4:07:51 GMT
No I haven’t. I just checked her FB too and last I saw was yesterday where they were on standby re going to the hospital. I’m walking out the door for the evening in 10 mins. I’ll reach out later tonight, or tomorrow if I get home too late. jenjie christine58....... I'm so sorry I worried you guys! Jen, you could text me anytime. I have my cellphone with me at all times (as sucky as it is!).
DH had a much better night and his breathing improved. For some reason his heart rate is still above 100. No idea why. This is at COMPLETE rest. But he looks much better and feels better. I know he's not out of the woods yet.
ITA that he should have gone back to the hospital. He's a tough one to deal with sometimes and he just wanted to be home. Everyone is right--I'm worn out and I'm NOT capable of handling medical care for him. I could just monitor him and call 911, which is what I've been doing.
I got some sleep last night and have some energy today, and he's actually on Facebook right now.......
Thank you all for your continued support. Even my family gets sick of hearing our constant emergency alerts! Today is a better day though. (I'm going through my Pea-box to sort things! It's HUGE, and I didn't even begin thanking people yet. I/we are SO very grateful though. Our lives are easier right now due to the Peas!!! xo)
I almost did text you but I was heading out the door for dinner with friends which had been planned for prob a month. It would be simple if you responded saying what you did here. But if there was something more going on it wouldn’t be fair to you bc I wouldn’t have been able to respond as I was driving or to be fully present with you. Been praying! Glad he’s feeling a bit better. I hope you can get some rest tonight. ❤️
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Post by hop2 on Jan 5, 2020 4:19:17 GMT
@bergdorfblonde oh my what you have been going thru. Hugs. You & your DH are in my prayers.
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Deleted
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Post by Deleted on Jan 5, 2020 20:49:46 GMT
jenjie christine58 ....... I'm so sorry I worried you guys! Jen, you could text me anytime. I have my cellphone with me at all times (as sucky as it is!).
DH had a much better night and his breathing improved. For some reason his heart rate is still above 100. No idea why. This is at COMPLETE rest. But he looks much better and feels better. I know he's not out of the woods yet.
ITA that he should have gone back to the hospital. He's a tough one to deal with sometimes and he just wanted to be home. Everyone is right--I'm worn out and I'm NOT capable of handling medical care for him. I could just monitor him and call 911, which is what I've been doing.
I got some sleep last night and have some energy today, and he's actually on Facebook right now.......
Thank you all for your continued support. Even my family gets sick of hearing our constant emergency alerts! Today is a better day though. (I'm going through my Pea-box to sort things! It's HUGE, and I didn't even begin thanking people yet. I/we are SO very grateful though. Our lives are easier right now due to the Peas!!! xo)
I almost did text you but I was heading out the door for dinner with friends which had been planned for prob a month. It would be simple if you responded saying what you did here. But if there was something more going on it wouldn’t be fair to you bc I wouldn’t have been able to respond as I was driving or to be fully present with you. Been praying! Glad he’s feeling a bit better. I hope you can get some rest tonight. ❤️ No problem!! Hope you had a nice time!! Gary's resting today. Last night was a bit rough again. He's going back to the doctor in the morning... Hugs to you, my friend!!
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trollie
Pearl Clutcher
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Post by trollie on Jan 5, 2020 21:15:32 GMT
Thinking of you and your hubby. (((HUGS)))
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Post by mrssmith on Jan 6, 2020 3:45:12 GMT
Hoping both of you get rest tonight and feel a bit better tomorrow!
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Post by mlynn on Jan 6, 2020 13:20:27 GMT
DH had a much better night and his breathing improved. For some reason his heart rate is still above 100. No idea why. This is at COMPLETE rest. But he looks much better and feels better. I know he's not out of the woods yet.
ITA that he should have gone back to the hospital. He's a tough one to deal with sometimes and he just wanted to be home. Everyone is right--I'm worn out and I'm NOT capable of handling medical care for him. I could just monitor him and call 911, which is what I've been doing.
I hope you have a pulse oximeter. Make sure you are keeping a record of his readings. That way you can show the doctor what his readings are and it may speed up his getting oxygen. Does he have sleep apnea?? If so, they may need to increase his pressure and/or add oxygen to his cpap. Many people have to use oxygen while sleeping even if they do not use it while up/awake. Take some of his readings when he is asleep and record them. I was in the hospital last month. When I went to the hospital, I was on 5 litres of oxygen, and my oxygenation was still low.. They upped me to 6 litres. (My normal rate is 2 litres with 3 litres when sleeping) I was having a kidney crisis, and that is what they focused on. They never did end up focusing on the oxygen as it corrected itself while dealing with the things affecting the kidneys. They had me back on 2 litres with mid to high 90's saturation. I fell asleep with my bi-pap on (have to wear it 24 hours a day except eating in order to support my heart). My oxygen saturation fell below 85%. Boy howdy, did that stir things up!! They came running in and woke me up in a panic (them, not me). They did all kinds of checking me out and checking the equipment before they calmed down. His oxygen saturation could also be affecting his heart rate. The lower his O2 goes, the higher his heart rate goes in an effort to get enough oxygen around to his cells. Double check with your insurance about the requirements. Here in WA, if your oxygen even touches 88, they prescribe oxygen. And that can be ambulatory. I have been on oxygen for over 2.5 years (since a reaction to a drug). I have to recertify every May. This year I had trouble getting my oxygenation down to 88 for a while. (Ironic, considering last month I was on the highest rate ever.) Anyway, there are a few fudgy things to try to "fail" the test. 1. Do not breathe deeper than necessary. 2. During the ambulatory test, pump your arms and 3.try to keep your pace up.
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Deleted
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Post by Deleted on Jan 6, 2020 14:16:41 GMT
DH had a much better night and his breathing improved. For some reason his heart rate is still above 100. No idea why. This is at COMPLETE rest. But he looks much better and feels better. I know he's not out of the woods yet.
ITA that he should have gone back to the hospital. He's a tough one to deal with sometimes and he just wanted to be home. Everyone is right--I'm worn out and I'm NOT capable of handling medical care for him. I could just monitor him and call 911, which is what I've been doing.
I hope you have a pulse oximeter. Make sure you are keeping a record of his readings. That way you can show the doctor what his readings are and it may speed up his getting oxygen. Does he have sleep apnea?? If so, they may need to increase his pressure and/or add oxygen to his cpap. Many people have to use oxygen while sleeping even if they do not use it while up/awake. Take some of his readings when he is asleep and record them. I was in the hospital last month. When I went to the hospital, I was on 5 litres of oxygen, and my oxygenation was still low.. They upped me to 6 litres. (My normal rate is 2 litres with 3 litres when sleeping) I was having a kidney crisis, and that is what they focused on. They never did end up focusing on the oxygen as it corrected itself while dealing with the things affecting the kidneys. They had me back on 2 litres with mid to high 90's saturation. I fell asleep with my bi-pap on (have to wear it 24 hours a day except eating in order to support my heart). My oxygen saturation fell below 85%. Boy howdy, did that stir things up!! They came running in and woke me up in a panic (them, not me). They did all kinds of checking me out and checking the equipment before they calmed down. His oxygen saturation could also be affecting his heart rate. The lower his O2 goes, the higher his heart rate goes in an effort to get enough oxygen around to his cells. Double check with your insurance about the requirements. Here in WA, if your oxygen even touches 88, they prescribe oxygen. And that can be ambulatory. I have been on oxygen for over 2.5 years (since a reaction to a drug). I have to recertify every May. This year I had trouble getting my oxygenation down to 88 for a while. (Ironic, considering last month I was on the highest rate ever.) Anyway, there are a few fudgy things to try to "fail" the test. 1. Do not breathe deeper than necessary. 2. During the ambulatory test, pump your arms and 3.try to keep your pace up. YES. He has sleep apnea, and hasn't worn his CPAP for over a year now b/c he continually gets upper respiratory infections from it (despite cleaning it thoroughly each time!!). Can't afford the SoClean machine and I've tried a few times to see if Medicare would pay for it or lend that machine WITH the CPAP machine (makes sense, huh?). They won't. Idiots. So, he fears using it. I don't blame him, but he does need it!!!
He just went on Friday for more blood, and they're looking at something with his kidney function. His kidney was affected as well as his urinary tract and bladder with this infection.
We did get a pulse/ox finger machine as soon as we saw the cardiologist this summer and he said that it's urgent to get one and check it. DH's pulse rate was always hovering around 90 at rest. His oxygen sometimes dipped to 88, but it's normally in the 90's. When he's checked at his (stupid) primary's office, it hasn't been below 88, so they will not order the oxygen for him. I told them that he had it when we lived in NJ for years, but they said that the 88# at rest is the guide. He did seem to do better on the oxygen in the hospital.... We'll check it again at his doctor's office--heading there now for another follow-up. He's still VERY weak, pale and can't breathe. (I will keep those 3 things in mind when they check it, but right now he can't even pick his arms up..... but, thank you so much & I hope you're doing well.)
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Post by mlynn on Jan 6, 2020 15:44:10 GMT
I hope you have a pulse oximeter. Make sure you are keeping a record of his readings. That way you can show the doctor what his readings are and it may speed up his getting oxygen. Does he have sleep apnea?? If so, they may need to increase his pressure and/or add oxygen to his cpap. Many people have to use oxygen while sleeping even if they do not use it while up/awake. Take some of his readings when he is asleep and record them. I was in the hospital last month. When I went to the hospital, I was on 5 litres of oxygen, and my oxygenation was still low.. They upped me to 6 litres. (My normal rate is 2 litres with 3 litres when sleeping) I was having a kidney crisis, and that is what they focused on. They never did end up focusing on the oxygen as it corrected itself while dealing with the things affecting the kidneys. They had me back on 2 litres with mid to high 90's saturation. I fell asleep with my bi-pap on (have to wear it 24 hours a day except eating in order to support my heart). My oxygen saturation fell below 85%. Boy howdy, did that stir things up!! They came running in and woke me up in a panic (them, not me). They did all kinds of checking me out and checking the equipment before they calmed down. His oxygen saturation could also be affecting his heart rate. The lower his O2 goes, the higher his heart rate goes in an effort to get enough oxygen around to his cells. Double check with your insurance about the requirements. Here in WA, if your oxygen even touches 88, they prescribe oxygen. And that can be ambulatory. I have been on oxygen for over 2.5 years (since a reaction to a drug). I have to recertify every May. This year I had trouble getting my oxygenation down to 88 for a while. (Ironic, considering last month I was on the highest rate ever.) Anyway, there are a few fudgy things to try to "fail" the test. 1. Do not breathe deeper than necessary. 2. During the ambulatory test, pump your arms and 3.try to keep your pace up. YES. He has sleep apnea, and hasn't worn his CPAP for over a year now b/c he continually gets upper respiratory infections from it (despite cleaning it thoroughly each time!!). Can't afford the SoClean machine and I've tried a few times to see if Medicare would pay for it or lend that machine WITH the CPAP machine (makes sense, huh?). They won't. Idiots. So, he fears using it. I don't blame him, but he does need it!!!
He just went on Friday for more blood, and they're looking at something with his kidney function. His kidney was affected as well as his urinary tract and bladder with this infection.
We did get a pulse/ox finger machine as soon as we saw the cardiologist this summer and he said that it's urgent to get one and check it. DH's pulse rate was always hovering around 90 at rest. His oxygen sometimes dipped to 88, but it's normally in the 90's. When he's checked at his (stupid) primary's office, it hasn't been below 88, so they will not order the oxygen for him. I told them that he had it when we lived in NJ for years, but they said that the 88# at rest is the guide. He did seem to do better on the oxygen in the hospital.... We'll check it again at his doctor's office--heading there now for another follow-up. He's still VERY weak, pale and can't breathe. (I will keep those 3 things in mind when they check it, but right now he can't even pick his arms up..... but, thank you so much & I hope you're doing well.)
I recommend consulting his sleep doctor. Perhaps the sleep doctor will prescribe oxygen use with the c-pap. Once you have the concentrator in the house, he can use it whenever he needs it. It takes oxygen from the room air, concentrates it and pushes it through tubes or hoses to his nose and he breathes it in. It is not like they can tell you are asleep or not when you use it or be able to tell how much of the time he is on the oxygen or what time of day.. I know you said he has trouble with the c-pap. My instructions tell me to soak the tubes, masks, cushions in warm soapy water. I am supposed to let them soak about 10 minutes. My mother used vinegar on hers. Vinegar is some kind of anti-septic. I use it to kill bacteria on produce. Since you have trouble with the soapy soak, I would follow it with a vinegar water soak and then rinse in clear water. Hopefully that will increase the effectiveness of the cleaning. I must confess that my bi-pap does not get cleaned nearly as often as it should. Like many weeks between cleanings. I just use tap water and Dawn Soap (original). You might change to Dawn. I would not use a scented soap. I am pushing the cpap as it could be very important. The c-pap takes pressure off the lungs, which should improve oxygen saturation. It also helps relieve some of the burden on the heart. That is why I have to wear it 24/7. I really encourage you to try to find a way for him to be able to use it. Again, when the doctor is testing, breathe as shallowly as he can. And do not let them take it too soon after taking him to the exam room. If he has just been exerting himself, he will probably be breathing more deeply, raising his saturation. Make sure he is calm first, and have him breathe as shallowly as he can. Since you haVe a pulse oximeter, he could actually practice and figure out what will help him "fail" the test. As for the kidneys...my crisis was caused by taking too much diuretic medicine plus too high a dose of blood pressure medicines. My bp was finally down where the heart doctors wanted it (less than 130). However, blood pressure can go too low and stress the kidneys. Evidently the 120's are too low for me.
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