I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: PrimeTimer on April 21, 2021, 10:38:11 AM
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My husband is back in the hospital. This time to have an angioplasty on his non-fistula arm because two fingers turned black. They did an MRI, no bone infection found. Just ugly black and near necrotizing fingers and of course, pain. All they will give him is Tylenol 3. They really are backing off pain meds (to anyone) these days. I feel for anyone in pain because I live with pain too. Nothing really helps so I don't know how I've kept from going crazy. Unless I am and it's just become widely accepted...
Meanwhile, hubby isn't in the hospital a day when someone from his side of the family ambushes me over the phone. :rant; This time it was his sister. She left me a pretty vile message. All full of the usual insults, berating and sarcasm and pushiness. Rude, rude, rude. Very ugly voice mail. Needless to say, I won't be returning THAT call. Unfortunately, this makes it bad for hubby. Sure, I don't have to tell him about this but the offender will call him and chew off his ear anyway about me. Happens a lot and more so if he's in the hospital or if his family thinks he's busy or away. But today is different. Why? Because other than telling hubby so I won't be accused of not passing along info to her, I am choosing to just ignore the witch. After-all, doctor told me to keep my stress level down. But I am mainly doing it because it's a choice I have. At a time when it seems that our choices are limited, I am expanding mine. Sort of like "expanding my horizons". Might not be a pot of gold or even a rainbow for me but knowing I am actually quite calm today and feeling well, almost chipper now it makes absolutely no sense to ruin the day by returning a phone call to the Wicked Witch of the West. :rant;
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That is what phone blockers are for.
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PT, I am horrified that your husband has found himself back in the hospital again, this time with black fingers. I mean, geez! What treatment plan is there for him? Is he looking at amputation? What's going on?
I am equally horrified by the fact that you are being harassed again. What is WRONG with some people? It's really hard to simply excise people from your life, to simply amputate them from your existence, but you have to save your life, and if the necrotizing effect of these people threatens to poison and eventually kill you, you have a duty to stop it. Anything else is negligence.
You are a smart woman. Take back control! Doctor's orders!
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Hubby's heart stopped today. He was to have an angioplasty to open up an artery but his blood pressure dropped too low when they gave him anesthetic. They did CPR and brought him back in less than 1 minute. He's in the ICU on a ventilator they said "just to help him breath". He may get to have it removed later tonite if he's okay. They are bringing in a cardiologist now. Sometimes he gets low BP at the end of dialysis and they give him a drug to bring it back up. This should all be in his chart. The kidney doc knows and the vascular surgeon knows. It is also a common problem among those on dialysis. As for his heart, he had a bunch of tests/monitoring last year, cardio doc said his heart was fine. The vascular doc is suppose to call me tonite or tomorrow. Now it's hurry up and wait.
I really do not want to call his family to give them an update because knowing them, they will just turn it into another ambush fest. Guess I could give them the update and then hang up or...wait until hubby can call them himself. Don't know.
MM: You are right. I have pretty much cut these people out of my life. They are toxic. Hubby doesn't want to but has drastically cut back on talking to them. I don't want to come between him and his family, I want it to be his choice if he finally cuts them off. He's told them a million times to stop being rude to me but they continue and they even continue being rude to him. But it's his decision as far as how much more he wants to put up with.
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Stay strong and care for yourself.
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Oh, PT, I'm so sorry to hear this rather frightening occurrence! Let us know what the docs tell you.
Do you think it would be possible to end your communication with those family members and just let your husband communicate with them how and when he wants? No one is stopping him from talking to his family, but no one should be forcing you to do the same. You are right that it is his decision to determine how much he wants to put up with. Let him decide. Let him do what he likes. And you just do the same. You don't have to come between him and his family. You are not putting a gun to anyone's head. Just let them all get on with it while you stay out of it.
Take care of yourself.
:cuddle;
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Hello PT,
I am so sorry about these unfortunate family-matters. But, wouldn't it be a good idea for you to arrange something on the lines of your friends and your husband phoning you and let it ring about three times, put the phone down and phone again for you to know, that it is definitely a friendly call from a person you would like to talk to? Such an arrangement could keep those unfriendly and threatening phone-calls away from you, because, after all, you have serious health-issues yourself and you need to be well enough to look after yourself and keep yourself as well as is possible and with upsetting phone-calls like that, it is very questionable that it gives you a chance. What do you think about it?
Best wishes from Kristina and most of all : Good luck to you both and best wishes to your husband as well! :grouphug;
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O PT I’m thinking about you, and your husband. Sending both you and your hubby healing and strength vibes.
Lots of love, Cas
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:'(
Pea Tea, I hope that your husband is in a better condition today. Please keep us updated. What a very scary experience.
Agreed with the others: these people need to be cut from all communication with you. Not only do you have a severe illness, but you do not deserve such harassment and belittling.
Are any of these hostile relatives your husband's contact numbers at the hospital, such as when he gets admitted? In the future, they don't have to know until YOU believe you should tell them and control the conversation.
Look, I don't want to kick a man when he's down, but your husband has to take a more proactive stance in backing you up too. You do not need to speak with these hostile people, but he does, he wants to, as they are his family. Totally understandable and acceptable. That said, he has to lay down some boundaries and a level of respect that he expects from them when you are the topic of conversation OR when there are instances when you NEED to speak to them. By disrespecting you like this, they disrespect him too.
Take care of yourself first and sending best wishes to your husband!
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Thanks for all the responses and well wishes. Really helps! Hubby is having a rough time today. Still on ventilator in ICU. They tried weaning him off sedation this morning because he was stirring in his bed. It became a no-go. He wasn't waking up, not opening his eyes or responding to commands. They re-sedated him so he will be comfortable and not gag with the breathing tube down his throat. Then later this afternoon they tried it again and this time he woke up, opened his eyes and responded. Bad news is that they decided not to do the angioplasty today...maybe Monday. He will be upset about that. Meanwhile, they are inserting a feeding tube into his belly. They are also following his dialysis schedule. I am sure he is freaked out by all this but for now he is at least comfortable and basically in a semi drug induced coma.
I am trying hard to keep it together. I am scared. I feel like roadkill. Because of the Prednisone I don't sleep anyway so the feeling like roadkill is nothing new. Somehow I've gained some emotional strength just in the past few weeks. I intend to maintain.
As for being ambushed, I hope I have helped myself to avoid further verbal beatings. The nurse in the ICU will call his family and let them know what is going on and give them the number to call to get updates on hubby. They have no reason to call me and if they do, I won't answer nor return their calls. I've always told hubby that if something were to happen I would let them know. Well, this is my way of "letting them know". And so they can make the call themselves to the ICU and leave me out of it. Do I think they will stop calling me? Heck, no. But at least I won't have to answer their calls. I did what I promised hubby and that was my only concern. Now I can focus on hubby and myself and not feel like easy prey for the predators.
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Pea Tea, I know that you are a strong lady, but this must be an incredibility difficult emotional time for you. Been thinking about you and your husband all day today. Thank you for the update though it is not as great as could be. Big huge hugs for you.
Speaking from experience, a semi-induced coma in ICU is a much better way to be than completely lucid. (The pills they gave me to keep me quiet just made me more :urcrazy;) They will keep him relaxed, get him stable, and amend their plan of action. Your mind must be like a beehive, buzzing like crazy, with all sorts of concerns and questions.
Good move of you to let the ICU people take the lead with communication with his family. They will share all that needs to be said and these people will not have to contact/harass/belittle you at least over this matter. Direct your energy to your priorities (your care and your husband) like you know to do!
Keeping you in my thoughts and as always, wishing you only positivity.
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They woke hubby up today just to see how he does. They said he got a little anxious so re-sedated him so he'll rest and not gag on the breathing tube. The vascular doc is going to proceed with the angioplasty on his arm on Monday. He said that should open circulation to the two fingers that are turning black and then they should heal. They are keeping him on a low dose of Midodrine to keep his BP up and at a safe level.
Meanwhile, I thought by having the ICU call his family and give them their number so that they can call for updates themselves, that I could avoid their crazy nastiness. Boy, was I ever wrong about that! His sister left me the meanest voicemail yet....saying that my husband is nearly dead because I haven't taken care of him and only bleeding his finances dry and that they are coming here to transfer him to a hospital in their own city AND....I had better watch out because they know where I live. WOW!! Guess I am being threatened now. Well, I doubt they'll come here and besides, if needed, hubby can be awakened and speak for himself. As for me, I see them at the door and I will call the police. I won't even open the door.
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OMG, Pea Tea! This is way beyond nastiness. This is just insanity with the threat of violence thrown in for good measure.
It seems to me that you've done your duty in supplying your husband's family a convenient way to garner information themselves about his condition. It also seems to me that staying informed is not really their goal, rather, what they really want is to harass you. I doubt they have the legal authority to have him moved to another hospital in another city, so these are empty threats.
I am so sorry you are being subjected to this. It is all so irrational and creepy.
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Okay, Pea Tea, I am flabbergasted!
What in the actual _____ is wrong with those people?
Like wtf? Haven't taken care of your husband? You live with the guy everyday, were concerned about his fluid intake, was his home dialysis caregiver, amongst I am sure a myriad of other things. Where the hell were they? Did they step up to the plate and do all that you did? Yes, you're the spouse (I get it), but they have no freaking clue.
What is all the urgency for them to get involved now? It's almost like feigned outrage. I'll give them the benefit of the doubt that they care for their relative, but this is just crazy.
Please take care of yourself. You should have not have to endure such a circus.
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While all of his family are rude to me it is his sister that's the crazy one. I don't know that she's dangerous but I am starting to realize that she maybe has what they call "psychopathic traits". And her bad behavior/rage is escalating. In fact, just so many months ago she was fired from her $100k job for using company email to very publicly berate and insult someone. A lot of vulgarity and very foul mouthed, much like the voice mails she leaves me. It made the news. If not psychopathic, at the very least a real hot head. And today has me questioning my having the hospital ICU call her with their number...when I checked on hubby they informed me that she has been calling and being very insistent that the surgeon call her, etc...in other words, she's making a nuisance of herself and causing trouble. Now I'm stressed that she's going to piss off the surgeon -and we need him! As for her transferring hubby to a hospital near her, very unlikely she can. Doubt Medicare would pay for a Med Flite and he has not signed any consent. They can wake him up and take him off the ventilator if needed and he can speak for himself. He is not brain damaged. And if he knew what she and the rest of his family were doing to me he'd be very upset. He'd probably tell them (or at least his sister) to buzz off.
Not so much in the past but lately hubby has finally stood up for me and for himself. He didn't know how at first but now I think he understands why I get upset. It's not just about respect but about treating people as the humans they are. Us "humans" have feelings, thoughts, desires and are motivated. Unless I have a dark soul I want and am motivated to love, respect and help my husband. And I always have. Why his family acts like I'm the baddie and up to no good, I don't know. Meanwhile, why would I or anyone for that matter, want to talk to people who are rude and mean-spirited and who also don't trust you? When they talk to me so rudely it is not only angering but painful. These people are very strange. But they also treat hubby like crap and he's finally gotten tired of that, too. In fact, we've had some long talks and he admits they've treated him like crap his whole life. It's sad, it really is. I'm glad he was adopted and does not share their gene pool with them. But enough of the negative stuff for now...
Hubby is to have the angioplasty tomorrow. They are keeping him on the ventilator and Midodrine until they are done and he's stable. A lot of prayers tonite!
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Your husband is adopted? Oh, that speaks volumes. There is undoubtedly some really dark plot in that particular story.
So, it's official. His sister is crazy and has a history of really questionable and newsworthy behaviour. That's all you need to know. Now you know it's not you, it's really is HER. That's should make it a lot easier to turn your back and ignore the kerfuffle.
If you think she may cause trouble between you/hubby and the hospital staff...if you truly think this could be a real problem, there would be nothing wrong with saying something along the lines of, "I am sorry I gave your number to his sister. It seemed like a good idea at the time, but I see now that it was not." The last thing you need is to be stressed about the reaction from the hospital! Still, I would bet the north 40 that this is not the first time they've seen behaviour like this. They've probably seen it all!
How are you holding up?
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I'm okay. I think. Thanks for asking MM. Of course I am nervous about hubby's procedure tomorrow and...scared. He was so weak going into the hospital and has lost so much weight. An ECHO cardiogram of his heart shows his ejection rate at 20 (normal is 60+). Just last year he went to a cardiologist and had scores of tests done and wore a monitor and was told his heart was fine. So why all the plaque build up in his arteries this year and a weakened heart? How could things go from "fine" to him "needing CPR" in just a year? Or is that just how it goes for those on dialysis? Since I've been sick I haven't really cooked the renal recipes for him. I didn't make him see a doctor when he lost his appetite and started losing weight. His clinic said he was malnourished. And thank god his neph can no longer prescribe pain meds because if he were to take an opioid with his weakened heart, he'd probably would have fallen asleep and never woken up. Perhaps we missed all the warning signals, the alarms, the obvious signs that he is seriously ill.
I am not going to beat myself up for not being on-top of things this past year, only because I am sick and my husband is a grown man and shouldn't need mothering. I do feel terrible about what he is going through but it isn't my fault. And it's not necessarily his fault either. And while I try not to let her get to me, it really hurts that his sister said that I "was killing him" and "not taking proper care" of him and that because of my "mental illness" and "selfishness" he could die. Well, I've never been diagnosed with a mental illness but say if I was, would that give his sister the right to say what she said? I don't think so. I don't think she had any right to say any of the things she said. And she speaks without knowing all the facts. But a lot of it isn't her business anyways. But she is sure quick to blame me for it all.
The ICU nurse will call me tomorrow to let me know when they are going to try the angioplasty again. Probably sometime in the morning. I never sleep through the nite anymore (thanks to prednisone) so I will be up to take the call. Heck, I've been staring at the phone already.
I keep thinking back to our wedding nite and the beautiful 5 star hotel we honeymooned at. We plan to spend an anniversary there someday. Tuesday will be our 14th! And I know that once he is stable and off the ventilator and gets his voice back, the first thing he will do is ask for me. And I know his first words will be "I am so sorry". I know he will be more worried about how I got through this than worried for himself. That's the kind of guy he is. I just want him to come home. Of course they will probably send him to a physical rehab facility again but after that, I want him home. His sister is NOT going to take him from me. He'll tell her to pound sand.
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Pea Tea, you already know this, and I hate to be the voice reminder of doom, but it needs to be said. Also, it exonerates you if you question yourself.
The combination of Type 1 diabetes, kidney disease and hemodialysis is a pretty difficult mix for the heart to manage. And the older one gets, the risks increase, especially if one is male. All one can do is be proactive about care and like you say, your husband is an adult. As a diabetic, the risks were without question relayed to him over and over again. I am very, very, very sorry to hear about him in such a state. Truly I am. These diseases suck, but I highly doubt missing some renal recipes broke it all down.
I'll just say that my heart has been monitored since I've been a teenager, because hey, being born with Type 1 diabetes is such a bag of fun. My doctor had me on a statin even before transplant not because of my cholesterol (both are too low actually..), but for arterial protection later on, when I finally hit menopause, and lose all the fun estrogen arterial protection.
I'm the last person on earth to give marriage advice :P as mine is like taming a dragon, but I like the example that marriage is not 50/50. There are some times where it is 80/20 or 90/10 or some other fraction. It simply means that while both are committed 100% to the union, there are times where one has to do more for the other, because while still committed, the other person can't particularly devote a large portion of energy to it. Some examples relayed to us were deployment and sickness.
You and your husband are obviously committed to each other. However, you too are now seriously ill. You could not expect yourself to continue with all your tasks as normal as now you have a weakened body to contend with, as well as all the mental anguish that comes with it. I am sure your husband feels awful for the entire situation with your health, but like you yourself said, he is an adult that shouldn't need mothering. He had to pick up the slack in his care..just like that additional 10% that someone takes upon themselves in a marriage. Again, I feel awful for what both of you are going through so I don't want to see it as blaming.
I often think back to when my mom (I know, I know, not the same context) slowly began to "stop mothering" my medical care so that I was capable of taking care of myself no matter what.
I know it hurts, but don't even give one iota of thought to what his sister said. She's crazy. Don't engage with crazies. It drives them even more crazy when you don't engage with them, so stand firm. Protect your feelings, your soul and your energy.
I hope you know that a baddie (as you call yourself in this context) is a badass babe. Check it out on the urban slang things if you don't believe me! So, actually, you ARE the baddie here!
Focus on all the good times ahead of you two such as that second honeymoon. It will be all the more meaningful and better after knowing how much you have endured and your love toughed it out.
You are in my thoughts and I am saying my prayers for a successful angioplasty!
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Thanks, I needed that (support) UT.
I'm afraid the day is not off to a good start. They went to reduce/remove one of his sedation drugs so that he isn't on too many during the angiogram/angioplasty but he began having trouble and struggled with that. At that point he was able to follow some commands but not all commands. They are now doing a CT scan of his brain to rule out stroke.
His sister has made an annoyance of herself with the ICU staff. My idea for her to be able to call the ICU herself for updates has backfired. They wanted me to clarify that I was my husband's main POC (point of contact) AND the decision maker, not her. So, she is up to something, lord knows what. What a bunch of nonsense. I'm ignoring her.
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Still no change but ruled out a stroke. That was the good news and I am relieved. They are trying to wean him off the ventilator again. They tried again to reduce the sedation drugs and he opens his eyes and looks around but still not taking commands. So they re-sedated him and will try again. It's a process that takes longer for some patients. I myself went thru the process but in lightening speed, which surprised them in another way. Once I was awake I used my eyes and fingers (yes fingers) to communicate that I wanted to write notes. They keep your hands restrained in case you wake up and freak out and try pulling the breathing tube out. Doing so can damage the throat and vocal cords.
Anyways, I am feeling down about all this but keeping my "eye on the prize". Today is our 14th wedding anniversary and I actually giggled recalling a memory. There was actually a lot that didn't go quite right that day but it did provide for future humor. At one point my husband made a look on his face that I can't forget. To this day I still laugh about it and so does he. I will have to remind him once he's able to talk. And we will definitely make up for his spending our anniversary in the hospital.
Happy Anniversary, Honey! I love you!
:wine; :bestwishes; :thumbup;
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Hubby and I are having a Date Night tonight! He is finally breathing on his own again and "liberated" from the ventilator and the breathing tube was extubated. Thanks to a very nice ICU nurse, she is going to call me at a specified time and put me on speaker phone so he can hear me. He won't be able to talk because his throat/vocal cords will be too raw but at least he will be able to hear me. This will definitely be better than any "telehealth" visit I've had! We haven't had a Date Night in a long time. So looking forward to it... :guitar: :-* :yahoo;
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I’m glad for you PT. And happy belated anniversary, 14 years is an accomplishment. Wishing you many more.
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Ah, some good news for your special day! That's terrific, Pea Tea. :cuddle;
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Hubby and I are having a Date Night tonight! He is finally breathing on his own again and "liberated" from the ventilator and the breathing tube was extubated. Thanks to a very nice ICU nurse, she is going to call me at a specified time and put me on speaker phone so he can hear me. He won't be able to talk because his throat/vocal cords will be too raw but at least he will be able to hear me. This will definitely be better than any "telehealth" visit I've had! We haven't had a Date Night in a long time. So looking forward to it... :guitar: :-* :yahoo;
Hello PrimeTimer,
I was so glad to read about the good news of how you were looking forward to your Date Night with your husband and I am sure that with your lovely attention he is doing much better soon ...
Best wishes to you both from Kristina. :waving;
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Great news!!
:cheer:
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Hubby now has ICU Delirium; an acute and fluctuating disturbance of consciousness and cognition, is a common manifestation of acute brain dysfunction in critically ill patients, occurring in up to 80% of the sickest intensive care unit (ICU) populations. Critically ill patients are subject to numerous risk factors for delirium.
Our phone date went well except that he'd veer off the conversation and talk nonsense. For instance, while talking about the angioplasty they did on his arm, he said "Yeah! Pelosi's house is just around the other side of that". I presume he was speaking about Nancy Pelosi's house but asked him why he was bringing that up. His reply? "Because that's where her house is!" I knew something was wrong. I know he would not talk politics in the middle of a conversation about an angioplasty. Unless in his mind both subjects are painful to him and just may very well be. But still, one has nothing to do with the other and I know for fact that no one is living in the artery of his arm. Not even Pelosi. So we ended the conversation and said our goodnight's. By the way, the nurse was there the whole time and said "it was probably the sedatives we gave him". I am glad she didn't want to talk politics either because I am in no mood.
When I called today I was told they suspect he has "ICU Delirium". They will reassess his mental abilities again tomorrow and to help (if he's still stable) move him to a regular room. They removed the feeding tube but he gags on solid food so until his throat heals from having had a breathing tube stuck down it for nearly two weeks they will give him soft food. He was still going between holding a normal conversation and delirium or hallucinations. They decided to re-sedate him so that he will rest. They will give him a sleeping pill to force him to sleep at night. Part of the problem with patients who suffer ICU Delirium is that if they are in the ICU too long, they have trouble with telling if it is daytime or night. Moving him to a regular room should help, especially since they have large windows so he can see sunlight and the outdoors. More bad news tho...he needs a fingertip amputated. I wonder if he's going to try to tell me they can park it in Pelosi's garage.
Meanwhile, his sister has made such a nuisance of herself calling the ICU for updates and demanding doctors and surgeons to call her, they asked for my permission today to remove her from the contact list. I assume she was rude, foul mouthed and out of control. I was mortified. So the idea of her being able to call and get updates herself like a mature woman has backfired. I'm afraid she has endangered the relationship my husband and I have with his doctors and surgeons -and we need them! And so I called his mother and her spouse (since I know they are now basically the only ones speaking to her these days). Told them what happened and that the ICU will no longer be taking her calls. I am my husband's "Main Point of Contact" and I will call just one family member with updates and they can pass it along to each other. That is that. Except I suspect the nasty voicemails from his sister to start up again but which I will just have to ignore. Not surprisingly, his mother was nice to me today. Of course she wants updates and so of course she is going to be cordial and that works for me!
As they say, "tomorrow is a new day".
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Oh gosh, Pea Tea, every day seems to bring a new obstacle. I imagine ICU staff see this sort of thing fairly often and are well able to handle it. I know it must be frightening for you, and I am so sorry this is yet one more thing that you and hubby have to cope with.
Who would have know that Nancy Pelosi would "interfere" with your phone date? LOL! I mean, I just know how much you both must LOVE Nancy Pelosi!!! :rofl;
Good...you got hubby's sister removed from the contact list! I'm glad his mother is more amenable to your wishes.
Thanks for the update. I always appreciate the news whenever you are in the mood to share it.
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I certainly vouch that ICU delirium is one heck of a ride!
My husband was petrified if I started talking about Daesh (always on the news, a topic we often talked about because of work) randomly. Then, I'd randomly transition to bikini waxes, and who knows what else.
When they finally took me off oxygen (completely, not just the ventilator, and then gradually reduced it from "high need" to basic ol' tubes in the nose), I was petrified to go sleep because I was like "I'm not going to wake up!" So, the solution was tranquilizers/sedatives, that only had the opposite effect: more crazy. Talk about attempting to stay up 24/7. It was like they gave me meth instead of some sedative cocktail plus sleeping pills.
When the doctor felt that I was stable enough, they'd roll me to dialysis with my bottle of oxygen, and it got all crazy in there too.
The effects continued for weeks (I'd say months) after and I actually do have permanent scarring from the breathing tube.
All of that said, I have a slight feeling what your husband is going through and you have my sympathies!
Not that it is my business, but has his mother been the more level-headed one to deal with in the past? Perhaps not the nicest, but easier to deal with? Hopefully that stable relationship continues to facilitate the flow of information. You know what to do: don't interact with crazy. Block her calls, ignore her messages.
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Maybe I should tell him that he shouldn't let Pelosi get under his skin like that. Now I wonder if that's where some of his socks have disappeared to. :waiting; OMG! NO WONDER his artery was clogged! He's a hoarder! :rofl;
UT: No his mother has not usually been the level-headed one but I suppose you could say she's a heck of a lot easier to deal with than his sister.
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Consent to Amputate: Because hubby is still experiencing delirium, I had to be the one to give consent for them to amputate his right index finger and partially amputate his right ring finger tomorrow. The surgeon tried to explain it to him but he got upset because he was previously told (by the vascular surgeon) that since it looked like new tissue growing under the necrotic tissue and no bone infection, that there would be no need for amputation. However, the plastic/reconstruction surgeon says that despite new tissue, it would probably necrotize again and he'd end up needing an amputation anyways. I can understand that. I can understand "why take the risk of infection and possible death". A diabetic as I've seen my husband suffer through, heal very very slowly. Too slowly. And during that time the diabetic can end up with infection. For a diabetic and person on dialysis who's immune system is compromised, an infection can quickly turn deadly. I gave my consent for the finger amputation. God forgive me and I hope I've made the right decision.
Next, once the situation of his fingers are under control, he needs a Heart Catherization aka "Heart Cath" performed. His ejection fraction is only at 20. Normal should be 60. He has a weak heart...and so they need to find out why. They suspect a weak valve. That will be the next procedure.
Tried talking to him today. It was rough. They ruled out a stroke but he can't speak clearly enough at times to be understood and still experiencing delirium. Even if he just answers "yes or no" questions I have discovered that he is unable to give a true honest answer. For instance, I asked if he had PT therapy today. He said no. But he had. I asked if he had speech therapy today. He said no but he did have therapy today. I felt so emotional with speaking with him and how everything must be so hard for him right now. I will call him back later tonite. Going to keep it light and cheery. Only positive. I advised the family to do the same and why.
Speaking of family, all but his sister have done an about face. A complete turn around in their behavior towards me. Not sure to trust it or how long it will last but for the moment they are being cooperative -and polite. The nasty voice mails from his sister continue. The family is going to have a word with her. Don't know if that will help.
Tonight I am going to try talking to hubby again, hopefully before they give him his sleeping pill, And then I am going to try to get a grip for being the one to have decided that he loses a finger. For all you spouses, partners and significant others and next of kin, this whole situation is hard and getting harder. I admit. So now I've got to figure out how to live with all these emotions I am feeling and decisions I make. I don't like this but I am not going to let the "duty" go to someone else. My husband needs me and I know he'd do it for me....make hard decisions. We've talked a lot of life support but not amputations. Wish we had.
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Dear PT how I wish I could gie you some more support. BUt in this situation you find yourselves in, you just have no choice. I wish both of you love, strength, luck and wisdom.
Love, Cas
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I'll tell you how you are going to live with your decision to have the amputation done.
1. You consulted the experts and were given all of the pertinent information. You are not a doctor, so you took advice from those who are.
2. You will remind yourself that you are a smart woman and are fully capable of making informed decisions.
3. You will also remind yourself that you do not have a crystal ball and cannot see the future consequences of your decision. However, you have been informed of the most likely consequence of a non-decision.
4. You will remember to tell yourself that you made your decision in good faith and with love and concern.
5. You will not look back
6. God has guided you. He has not left you alone. You will remember that, and you will spend your time helping your husband instead of wasting your time second guessing and undermining yourself.
That's how you'll do this.
:cuddle;
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My wife and I went through the same decision agony when it came time to have the vet execute our best friend. Like you, we could not get him to directly tell us what he wanted - we were put in the position of trying figure it out. I realized I would want the same treatment, as a human, if I were waking up in my own excrement unable to move out the steaming pile.
Afterwards, we came to be even more confident we are at peace with what happened. I hope that you find the same peace after the procedure has been performed.
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Thank you everyone for the kind words. They help enormously. Hubby had another bad day.
After recovery from surgery, they moved him to a regular room. He slept most of the nite. He was in a lot of pain so they gave him pain meds and he promptly fell asleep. That was good because he needs all the rest he can get. Then this morning, they brought a dialysis machine to his room but about halfway thru, his BP dropped and he became short of breath and lethargic. He spiked a fever of 102.9, which is a bit higher than the postoperative fever they may expect and then he became unresponsive. They rushed him back to the ICU. They decided to do another CT of his brain to check for clots, stroke, brain damage, all of the above, etc, etc. Should know the results late tonite or tomorrow.
Several hours later he started coming back around and opened his eyes and took a look around. He couldn't speak clearly but he was trying. He seemed to know where he was at but they aren't sure. As for the high fever, it's leaning towards Sepsis. Nasty Sepsis. Dammit. They've got him loaded up on antibiotics. And they put a feeding tube up his nose this time instead of in his belly -just in case he can't swallow meds or food. He tried taking it out but they don't think he knew what he was doing. That's actually common amongst patients who are not coherent or cognizant. It's a sad thing to watch. They have to restrain the patient's hands at that point.
The good news is that he is breathing on his own -no ventilator. He's on supplemental oxygen but thank goodness, NO ventilator. Tomorrow is a new day. We wait. I sweated all most of the day but don't think it was the Prednisone. I can't talk to hubby right now but I close my eyes and talk to him and can only pray that he hears me. Drives our cats crazy when I do that but if I cry they get more upset. So I talk to hubby in the only way I can right now. In whispers and soft pleads and begging. Please hear me honey...
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... Hopefully the antibiotics "do their job" and work well a.s.a.p.
and hopefully you are soon together again ... fingers crossed ...
Best good-luck-wishes from Kristina. :grouphug;
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The Ties That Bind The good news is that my husband remains stable and breathing on his own. But they are keeping his hands restrained. He is still experiencing delirium and kept pulling out the nasal-gastro feeding tube. So they restrained his hands. Tied them to the bed. They put the feeding tube in because he was gagging and choking on food. A Speech Pathologist has started working with him and performed a "modified barium study" today of his throat and ability to swallow. He passed the test. This means his throat is fine and swallowing shouldn't be a problem. I said perhaps he keeps pulling out the feeding tube because it's well, irritating him. The doctor agreed. They said it could also be a part of the delirium and that he doesn't realize he's pulling it out. So they are going to try giving him pureed food and see how he does without the feeding tube. I asked that if possible, have him call me while his hands are unrestrained...we have ties to our hearts. Yes, THOSE ties that bind.
Meanwhile, the delirium causes him to still be confused and not always coherent. He knows his name, the date, year and where he's at but at the end of almost every one his spoken sentences, he mumbles. Can hardly understand him then. They also mentioned that because he is a dialysis patient, calcium in the brain and body build up and cause similar problems. The latest CT scan of his brain came back "clean" with "no findings" meaning, no stroke, no tumor, no brain damage. They said perhaps the meds and anesthetic he'd been given hasn't quite dissipated yet. They want to do a heart cath but not until his mental status improves. They think he has a damaged heart valve but do not want to bombard his body/brain with more sedatives and anesthetic just yet. So we wait.
Something new for him that I am actually happy about; Seroquel aka Quetiapine. They are giving this to him for agitation and to help him sleep. It actually has a variety of uses. It is not a benzo drug and is not habit forming or addictive. Wish his Neph had known about this instead of just saying "no longer allowed to prescribe pain meds". That's not a solution and certainly does not help the patient. The doctor at the hospital had guessed that he's had stress from experiencing prolonged pain and that it might be adding now to the delirium. Hearing that made me want to cry but also angered me because until he landed in the hospital, none of his other doctors even tried dealing with his pain. They just kept blowing him off, saying he needed to see a pain specialist. Okay, so how come they didn't refer him? How come they don't know about Seroquel? Well, I may as well stop here before getting too worked up. I gotta breath. And altho he can't speak clearly yet, hubby is breathing easier too. No phone call yet tonite but tomorrow is a new day.
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Look Ma, No Hands! First, let me clarify this; my husband still has both his hands. A couple of his digits have been uh, modified, but he still has his hands. Every day is a challenge for him but with that sometimes comes success. And hope. They’ve been doing a little bit of physical therapy with him. The other day he was able to stand up beside his bed -without help! And he did it twice! I imagine it must’ve felt a little like when we were kids and rode our bicycles for the first time without hands. C’mon, you gotta remember THAT! We thought we were so cool doing it too. For the mothers who witnessed it, the feat probably gave them a few gray hairs. If you were smart you didn’t mention it to her let alone show her. But it felt so great to ride without any hands. Back to standing up…Normally most of us don’t think a whole lot about standing if at all but, when you’ve been in the hospital as long as hubby has and as weak as he is, you feel like you’re on Cloud Nine. I’m so proud of him!
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I’m glad to hear he is up that sound promising.
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Thanks, iolaire. And thanks too to everyone who has been sending well-wishes and positivity our way. It was such a big deal to him to be able to stand up and to do it on his own. Even something as simple as having his appetite back gives him hope. He still has to eat pureed food (he calls it babyfood) but surprisingly he says it tastes good. He's got a long road ahead of him but has to do it in baby steps. So his description of the food was kind of fitting.
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pT in 2016 I had my second major heart attack and my ejection fraction was measured at 20 percent. I survived 3 major operations the last a 7.5 hour ablation and icd implantation. Obviously I survived and despite a very irregular heartbeat still enjoying my self. I am living proof that it is possible to live with a 20 percent injection fraction but still enjoy my life. I hope your husband pulls through and embarrasses the doctors by his thriving under difficult circumstances.
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pT in 2016 I had my second major heart attack and my ejection fraction was measured at 20 percent. I survived 3 major operations the last a 7.5 hour ablation and icd implantation. Obviously I survived and despite a very irregular heartbeat still enjoying my self. I am living proof that it is possible to live with a 20 percent injection fraction but still enjoy my life. I hope your husband pulls through and embarrasses the doctors by his thriving under difficult circumstances.
Thank you SO much for your encouragement, Michael Murphy! Your experience and strong will to live gives me hope. I am quite sure your whole positive attitude, along with what I am guessing is a "failure is not an option" outlook on life has something to do with that. It helps me tremendously, thanks for sharing. I really mean it.
Hubby might have a heart cath done tomorrow but don't know for sure yet. I am waiting to speak with his Cardiologist and it has been like pulling teeth to get him to call me. Meanwhile, the case manager at the hospital called and said my husband has used up "all his Medicare days" to go to any Rehab Facility when he's discharged from the hospital (whenever that will be). I guess once they figure what to do about his heart he will have to come home and rehab and exercise here. I pray he can do that. He and I will just have to keep each other going until we get better.
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pT in 2016 I had my second major heart attack and my ejection fraction was measured at 20 percent. I survived 3 major operations the last a 7.5 hour ablation and icd implantation. Obviously I survived and despite a very irregular heartbeat still enjoying my self. I am living proof that it is possible to live with a 20 percent injection fraction but still enjoy my life. I hope your husband pulls through and embarrasses the doctors by his thriving under difficult circumstances.
Thank you SO much for your encouragement, Michael Murphy! Your experience and strong will to live gives me hope. I am quite sure your whole positive attitude, along with what I am guessing is a "failure is not an option" outlook on life has something to do with that. It helps me tremendously, thanks for sharing. I really mean it.
Hubby might have a heart cath done tomorrow but don't know for sure yet. I am waiting to speak with his Cardiologist and it has been like pulling teeth to get him to call me. Meanwhile, the case manager at the hospital called and said my husband has used up "all his Medicare days" to go to any Rehab Facility when he's discharged from the hospital (whenever that will be). I guess once they figure what to do about his heart he will have to come home and rehab and exercise here. I pray he can do that. He and I will just have to keep each other going until we get better.
I'm so proud of you for facing all that kinds of troubles positively. You are indeed strong and may this attitude continue. We know we can't give help physically but, just like you, we are always hoping for better results.
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Can You Hear Me Now? Hubby had the heart cath yesterday. Actually an angiogram. Cardiologist says all his coronaries look normal but he does recommend a stent. The doctor wants to wait on that until hubby's mental status has improved a little more. They don't want to bombard his brain with more anesthesia. He's still experiencing delirium but it is what they call the "waxing and waning" phase now. It comes and goes. For instance, the other day he thought he saw a cat wondering the halls at the hospital and on another occasion he thought one of our own cats was cuddling in bed next to him. He kind of giggled when he told me that...he said he wanted to know if it were possible that our cat was there or was it a dream. I told him it was a dream...he laughed and said "thought so". At least he is starting to realize the difference between the delirium and reality. He just wants to confirm it with someone. I know it's not a funny subject but he and I do laugh about it. I think this helps him to talk about it. No one likes to think they've gone mad. Worse yet, no one wants to hold all their fears inside and suffer alone. Everybody needs some reassurance that they are going to be alright, even when they aren't.
More good news, hubby seems to be making up for lost time. He remembers his families phone numbers so has been busy calling them (and me) and talking up a storm. Until the evening and by then he has worn himself out. Between being on the phone and doing PT in his room twice a day he has sort of been getting a work out. They think he may get to come home later in the week. We'll see. I sure hope so. It's hard to rest without him here. I wake in the nite and think I hear him but of course he's not there. I've stopped getting up to check. Will be a heck of a lot easier when I can just reach over and feel his hand. Or tell him to stop hogging the blanket.
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Oh, this is a great development, Pea Tea. I'm ready for some good news! Hubby's something of a chatterbox now, eh? LOL! Soon he'll be talking your ear off...at HOME! Yay!
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Great news :cheer: more vibes on the way :yahoo;
Lots of love,Cas
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Who's On First? Oh boy. Here comes the clown car. It reminds me of that old Abbott & Costello comic routine "Who's On First?" Only this isn't funny. And when he wakes up I'm pretty sure hubby won't be laughing either. As of yesterday the game plan was for him to be discharged today. But nope. Not going to happen. Not because there is a delay in paper work or prescription-writing but because HE'S HAD ANOTHER PROCEDURE TODAY! I am ticked. Really ticked.
They did an angioplasty of his lower left leg. There were no blockages. Well gee, that's great except that I was told they did his left leg LAST WEEK!! I am ticked that no one called me about any of this today. I had to call and find out on my own. And just the other day the Cardiologist said he would need a stent but wanted to wait just a little longer so that they don't bombard his brain with more sedatives/anesthesia too soon while still feeling the effects from ICU Delirium. SO...now I wonder what today's leg angioplasty did? They sedated him and now he is sleeping it off. I mean, WTH? One doctor puts off a procedure in order to help him but another doctor comes in and performs a procedure! Guess the two don't talk. They certainly don't talk to me. I swear, the s**t never ends. They not only need to teach "bedside manners" in med school but perhaps a lesson on "communication" would serve them well. Or a "connect the dots" map with the words "talk to the wife" printed in the middle of it.
I once had a job where I had to be absolutely without-a-doubt 100% accurate or else, like I was told, both me and the department would lose all credibility. Failure and miscommunication was never an option. I think doctors communicating with their patients and their spouses/next of kin/partners, etc should exercise the same standard.
Abbott and Costello on you-tube
https://youtu.be/kTcRRaXV-fg
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Over 120 Days Now Okay, so I am wore out now. Was told hubby may be discharged Monday. Today is Tuesday. Apparently he has used up his allowable days with Medicare so unless we can make a cash deposit/down payment and weekly/monthly payments ourselves, he cannot be discharged to a short term facility for physical therapy rehabilitation. Thus the delay in being discharged. They (doctor/hospital) also do not want him to be discharged to me to come home because they think I am an invalid (I'm not). So they are arguing that he has to go to a long term nursing facility and not a nice place. Don't know how they think they will get paid because they won't.
From what I read, by law, as my husband's spouse I am designated as his Power of Attorney if he is unable to make decisions for himself. Well fortunately, he is able to make his own decisions. So now he has to fight with them to be discharged to come home to me. We can do this. I can help him rehab...walk, lift weights, stretch, etc....and I can cook him healthy meals. It would be a lot better than being in the hospital because while the PT people visit him often, they come for just a short time and then the rest of the day/nite he is left in bed....with bedsores now and forced to use a bed pan. He can stand on his own and feels he can walk to the bathroom or use a walker to go on walks but nope, the hospital is too afraid of litigation if he should fall. So they leave him in the bed all day/nite suffering. How is that any better than the care he can get here at home? I am beyond sad. I am beyond angry. I feel beaten, as tho I have lost the battle. I feel like such an efin failure being unable to be with him and bring him home. Having Sarcoidosis sucks. I'm afraid that if he is ends up in a nursing home for the "poor" that he will only languish and I may not see him again. My heart breaks.
And my A-hole father in-law left a voice mail asking me why my husband isn't using the cell phone he sent him several months ago. He didn't bother asking how my husband was doing or how I was doing, he was just concerned about that damn cell phone. His message made me want to vomit. Can it be any worse? Oh yeah...but right now this is my living hell.
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Talk about a rough 120 days - wish you continued strength and for him to get his way discharge wise.
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I know you are not an "invalid", Pea Tea, but are you honestly sure you would be able to take care of him should he come home, say, by the weekend?
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I know you are not an "invalid", Pea Tea, but are you honestly sure you would be able to take care of him should he come home, say, by the weekend?
MM: I'll put it to you this way; he would stand a better chance at building his strength back up here at home than he does lying in a bed in a nursing home or any hospital. He feels he can move about, perhaps with the help of a walker but they won't let him because they are afraid he may fall. They are afraid of being sued. Okay, I get that, I really do but it does a patient no good to lie in bed with bed sores waiting for an hour of physical therapy and then back to lying in bed and suffering. I may not be at my best either but I am not bedridden and actually try doing a little more as I feel up to it. With the exception of being home for a few weeks in March/April, he has been in a hospital and facility for over 120 days now and wasting away. The only reason he had returned to the hospital was for an angioplasty on his leg but things went south during the procedure. But now he's at the point where he is literally being forced to stay in bed. No one gets him up to walk him or to even push him in a wheelchair just to be out of that bed. He needs to get up and out of bed as often as he feels up to it and begin to slowly build up some strength. That's not going to happen when they just leave you lying in bed. We have a walker, a wheelchair and a shower chair here at home. And I can cook small meals. And he can get outdoors if he wants (with the walker or wheelchair) and get some fresh air. We can push each other. I am up to it if he is. Just gotta get him out of that damn hospital.
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They transferred my husband to a nursing home today -without my knowledge. I suppose he knows but I don't know and can't talk to him because they say "he's sleeping".
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PT let’s hope his recovery is quick and he is home with you soon you and him are in my prayers.
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My heart is breaking for my husband. They transferred him back to the ICU this morning. His BP dropped to 55/40. His belly was also distended so they drained him of fluid/undigested food and trying to figure out why that happened. Lots of scans. They are hitting him with meds thru a central IV AND a PiCC line and put him on a BiPap machine until he is stable. Please send prayers and a whole lot of positivity our way. I actually slept a straight two hours last nite. Then the phone rang with this news. But he's a fighter. He opens his eyes and looks around and he's aware of everything. Wish they could do that heart surgery but they want to wait until he's a little stronger.
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Sorry PT, are they letting you visit him?
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All the love, healing, strength and positive vibes coming both your ways. Like Iolaire asked, can you visit him, or speak to him?
:cuddle;
Lots of love, Cas
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iolaire and Cassandra: He can't talk right now because they are using a BiPap machine on him. Meanwhile, we are still without a car and I don't have anyone that can drive me. I have a portable oxygen concentrator but with a very limited amount of O2. I can't risk getting stranded and running out. I can't take a taxi or Uber because hubby has the bank card with him (he didn't know he'd end up in the hospital). Thank goodness I wrote the card number down so at least I can order groceries and meds to be delivered. Taxi's require the actual card. I can't take the free volunteer rides because those are for doctor appts only. The phone has been my only "lifeline" to him and it sure sucks.
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Oh, Pea Tea, I am so sorry to hear this. It must all be so frustrating and frightening for you both. Does he have a social worker that might have some transportation suggestions for you?
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I can't take a taxi or Uber because hubby has the bank card with him (he didn't know he'd end up in the hospital). Thank goodness I wrote the card number down so at least I can order groceries and meds to be delivered. Taxi's require the actual card.
Why can't you take Uber or Lyft? Neither requires the actual card - you register it in the app once and only have to update it when the expiration date changes.'
There is always the danger of cabbies playing the "credit card machine is broke, I need cash" to avoid the CC charge. It's so common that Boston requires cabs to be withdrawn from service if their CC system is down.
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I am going to have to figure out how to get an app on our home computer. Otherwise hitchhike. I'm being sarcastic now but am not myself at the moment.
-They just put him back on a ventilator. They say he is really struggling. His BP is 90/40 and that is with 4 BP meds thru an IV. Not a good day I'm afraid.
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Do you have to have an iphone or some sort of handheld device to use or download the app to use Uber? I found Google Play on our home computer but do not have a cell phone.
His blood pressure is now 58/40. They will perform CPR if he codes.
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My husband has passed.
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Contact the aclu or if your state has attorneys for the less well off, see if you can get a order demanding. His immediate release. Additionally your doctor should certify that you are capable of providing care. If that doesn’t work threaten a lawsuit because if hubby wants to go home and is willing to go ama then he is being held against his will.
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My husband has passed.
Dear PrimeTimer, I am so sorry to read these sad and shocking news and I send you my deepest condolences. You and your husband have both tried so very hard and it is so sad to see how brutally cruel this kidney-disease really is. I am thinking of you and send you my deepest condolences and sympathetic thoughts from Kristina. :grouphug;
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PrimeTimer I'm sorry for your loss and the pain leading up to it.
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Oh, Pea Tea! I have been dreading this news for some time now, and I am so very sorry for all that you and your dear husband have been through. Please accept my deepest condolences, dear lady. :grouphug;
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Dear PT I’m very sorry to read this. I’ll be thinking of you a lot, and a sending strength vibes too.
Lots of love, Cas
:grouphug;
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I am so sorry.
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I feel like I've just lost my purpose. But thank you for the condolences.
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There are no words to express my profound sorrow I have become vested in your hubby progress.I know how I feel is a mere shadow of your feelings. Your stories of his life were so full of love. I know you have had a heartbreaking loss. You and your husband struggles and the obvious love and care that you filled your writings with helped me deal with my minor life difficulties. I will say a prayer for you and your wonderful courageous. Husband.
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Hi Prime Timer-so sorry to hear about your husband. I have not been on here in a long time. Also sorry to hear the struggles that YOU have been through as well. I will left up prayers for both of you :'(
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Pea Tea, please accept my sincerest condolences on the loss of your husband. Extremely saddened by this news. You were so devoted to the love of your life and this shone through.