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Thread: John's Home take....Yeah I've lost count!

  1. #11
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    I think people think they are helping sometimes when they are just causing more problems. It's worse if they are particularly out of the loop. Obviously they have no idea what you are going through, let alone what John's going through. I can say that outside this forum I've not found many people that seem to be able to empathize/sympathize.

    I'm so glad that John is making progress now. I hope he'll continue to show improvement now that treatment appears to be working.
    ~ Bob

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    That is one hell of a bumpy ride John and the rest of your family are on, I just hope that the smoother bits start to last longer. I'm sorry that the situation can also bring out both the best and worst in the people around us. It's all a bit of an eye opener isn't it? At least here on the Forum, you can vent to people who know exactly how it feels.

    I have to add that I'm surprised at how short his hospital stays have been, or is this by choice? When first diagnosed I was not allowed home for 10 weeks even though I was not feeling too bad for much of that time. The doctors just wanted to monitor me day and night until they were sure that I was stable. Even then, I lost my kidneys, so perhaps I was not as well as I felt!
    Jack

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    Jack, your post only proves that you are not American!

    People are forced out of the hospital pretty quickly here, whether they should be or not!

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    Exactly. Very rarely will they let you stay just to keep an eye on things. On different occasions I've had massive lung hemorrhage, been filled with uncountable blood clots, had severely elevated intracranial pressure, had pneumonia while immune-compromised, etc... and I've never been admitted for longer than 8 days! It's made for a very rough transition home, since the minute I'm feeling better they discharged me. There is no time to start walking around the unit in order to regain strength or anything. So I go from being bed-bound for a week to having to function living alone with 3 pets.

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    This is why I am so sad for Americans. It makes me very ticked off. When I was in the hospital last year in August, to start the IV antibiotcs for the lung infection, they wanted me out after I was in there about a week. I asked if I could stay longer to see if I get any better. They said yes. I stayed for another week and I improved a bit. I was in very rought shape. I constantly was coughing and had very low energy and massive headaches. They wanted me out as soon as possible because they did not want me to catch anything else. Once I got home things got worse. The first week home I thought I was going to die. Then by the middle of September things started to turn around.
    Phil Berggren, dx 2003

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    Quote Originally Posted by Sangye View Post
    Exactly. Very rarely will they let you stay just to keep an eye on things. On different occasions I've had massive lung hemorrhage, been filled with uncountable blood clots, had severely elevated intracranial pressure, had pneumonia while immune-compromised, etc... and I've never been admitted for longer than 8 days! It's made for a very rough transition home, since the minute I'm feeling better they discharged me. There is no time to start walking around the unit in order to regain strength or anything. So I go from being bed-bound for a week to having to function living alone with 3 pets.
    I find it amazing with your health issues that out got out in 8 days. Last year I was in patient for five months in hospitals and skilled nursing home from end of March to end of August. Two months were in hospitals with half of that time in ICU units. Ten days were in rehab hospital across the street after my release from the medical units. My skilled nursing home closer to home was attached to the hospital and i made the 50 yard trip down the hall to the ER and hospitals section frequently during my stay along with transfers back to my main hospital as needed. During this time I had about a week of visits outside with two over nights to a hotel for out patient appointments and one three day visit home. The brief visit home convince me I was not ready or able to be home and try help care for myself. I had pushed hard to go home and the rehab staff thought I should try it but it didn't work out at all so off to a skilled nursing home where i could take longer to convalesce. At nursing home I could also get out for a couple hours for a meal or activity or medical appointments. Despite this nice graduated plan I still found it difficult to handle my return home even with my live in nurse (spouse) and hired home maker help since any effort was so exhausting. I can't imagine how you can handle going from being bed bound to live alone with three pets.

    I guess I was also very lucky not to ever feel I was being pushed or forced out of a hospital or care facility unless I felt ready and wanted to leave. And yes, I do live in America.

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    It's odd because all those times I've had great insurance that didn't push my doctors to discharge me. There were abundant reasons for keeping me. Hospitals are short on beds though, and they need to move people out.

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    It is quite evident that hospitalization is different here and in Europe. I do however agree that unless the patient is in a bad way, or has no one to take care of him at home, it is best to go home.
    There are many hospital bugs that are dangerous to our health, also, at home we are more apt to move about, to get and make food or just putter around. One of the things I heard from the nurses when I visited poor Moyan was that she did not want to get out of bed. They wanted and needed her to get up and walk. She had a special machine by the bed to help her get up. Sadly, she felt that she just didn't want to get up and walk about.
    Jolanta

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    Frankly the hospitals in the US (not sure elsewhere) seem quite inconsistent. Some appear to be significantly better than others. I had very bad experiences in the ER in both major hospitals in Columbus, Oh last year. Since they didn't think I looked all that sick they left me sitting for an EXTENDED period of time before even talking with me.
    ~ Bob

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    Hospitals really vary. I spent a lot of time in Flagstaff (AZ) hospital, which even though it's a regional trauma center is still a small hospital. My care was excellent, particularly in the ER. The doctors didn't generally know what to do with me, but they knew that they didn't know. LOL

    At JHU, my ER experiences have been pretty awful. I've never been seen in less than 5-6 hours, even when I was coughing up blood with a known history of lung hemorrhage. When I needed to be admitted, I've never gotten a bed in less than 12 hours. They are enormously overcrowded. When you do get admitted, the doctors are excellent. The nurses aren't so great-- too few, I suspect.

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