blurry vision

[elephant]

How are you today LIghtwarrior, that doctor is not thinking...Hello of course you need Bactrim.....to increase your prednisone that high without him talking to your Rhuematologist. Another "Hello!"
Usually when I am admitted at the hospital...I felt like I was running the "show." There was one doctor at the hospital that had a clue, she was a hospitalist....thank goodness I felt comfortable with her because I was a mess.....when your that sick you want someone else to be on top of " medical stuff"

[Sangye]

I hope you're doing okay, LightWarrior. Every time I'm hospitalized (no matter which hospital) I have to be on guard like that. I won't even describe my recent hospitalization at a local death trap.

[Lightwarrior]

I hope you're doing okay, LightWarrior. Every time I'm hospitalized (no matter which hospital) I have to be on guard like that. I won't even describe my recent hospitalization at a local death trap.

Sangye, This is the hospital where I work and if it weren't for the nurses I am fearful for John Q public. I had a couple of the docs I work with review the CT "off the record" to make sure the surgery was medically needed, since I was worried about the whole inflammatory process causing a flare. I felt better that they both agreed that it was urgent. I couldn't tell anyone they helped because it would have been "stepping on toes". Elephant, I understand what you mean when you say you have to run the show. I was always a strong patient safety advocate but this experience has strengthed my resolve and made it a mission for me to improve safety and care. Jack, I couldn't get them to get my medication reconcilliation right, which is required by law much less consult one of the docs dealing with me. I made all of those phone calls myself. The people we should feel the safest with can be our worst enemies.

I do feel much better today, I went ahead and took off today and tommorrow and will return to work on Monday. I'm trying to be smart and not push so that I have better long term outcomes.

[Sangye]

Glad you're doing better today, Light. I can't imagine how much harder it is in many ways for you being in your own hospital!

At times my friends who visit me in the hospital remark that I'm being a control freak. I check every drug, read all my own lab reports, CT reports, etc.... I'd never stayed in this local hospital before. The vertigo required me to have someone with me every second, so our sangha took shifts 24-7 the whole week. Within the first day, they had seen so many errors (and I was struggling so much to advocate for myself) they decided to keep a notebook listing every interaction, every drug given, etc... The "Advocate Book" got passed to the next person. After a couple days of seeing for themselves the huge number of errors that had been made or almost made, I don't think they'll ever bug me about being on top of things again.

[Lightwarrior]

Mistakes can happen even at the best hospitals. I encourage you all to take a look at the video and/or read the transcript from the Josie King story, her mother Sorrell King has made a huge difference in hospitals perception of their own mistakes, and yet we still make them. You have to have someone advocating for you. Here is the link

Institute for Healthcare Improvement: What Happened to Josie

[elephant]

Got back from the eye doctors....yes my cataracts are much worse and need cataract surgery in both eyes in the fall. The only do one eye at a time. Oh well, least it's not my glaucoma acting up!

[Palmyra]

Mistakes can happen even at the best hospitals. I encourage you all to take a look at the video and/or read the transcript from the Josie King story, her mother Sorrell King has made a huge difference in hospitals perception of their own mistakes, and yet we still make them. You have to have someone advocating for you. Here is the link

Institute for Healthcare Improvement: What Happened to Josie

Hey Lightwarrior,
That's why I am here...a registared member of this site. I don't have WG, but my daughter does. I feel that my participation in her care has minimized the impact of this dasterdly disease for her. I have no problem speaking up, asking questions, reading meds or charts. Most hospitals and nurses are not used to that kind of involvement. Over the years I have tried not to be reactive, but still assertive. Kind but close, with questions being the best way to shed light on something I think may be suspect.

I really appreciate the maturity and focus the members of this forum have on advocating for themselves. Here, here, cheers to good people with sharp minds!

[Jack]

The hospitals I have been in have not had any problem with me keeping and dispensing my own medication. The last one just stipulated that I sign a waiver and they provided a locking cabinet to keep them in. At drug round time, they just run through the meds and get me to confirm that I have taken them. I must say that I've never seen anyone else doing this, but there does seem to be provision for it.

[DEE]

it must maybe be a UK thing as i did the same as Jack on my last admission its also a way of been able to take them at your usaual time as very often drugs round time can depend on how busy the nurses are
ive just remembered a pharmasit came to check the doses with me and she signed a form to say it was ok DEEx

[Sangye]

Got back from the eye doctors....yes my cataracts are much worse and need cataract surgery in both eyes in the fall. The only do one eye at a time. Oh well, least it's not my glaucoma acting up!

I'm so glad you got checked, Elephant. Thank goodness it's something that can be easily fixed.