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Alysia
07-09-2015, 10:03 PM
Hi.

for those who wonder why I ask, please read here, on page 64 post 640 http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4238-update-pberggren-continued-64.html


I will be more then grateful for every comment and sharing. if you write please say a word about the quality of that hospital.
1. when you are being admitted to hospital, do you get a sterile room/ isolation room, because of being immunocompromised as a result of the medications we are on ?
2. are there any special precautions that the staff keep while treating you, like masks, others ?
3. do the staff always use gloves or have to use them ?

Thanks anyway.

gilders
07-11-2015, 06:05 PM
Hi Alysia,
1. I am not guaranteed my own room. When my Wegener's was at it's worse and I was on ctx (until they realised that I couldn't tolerate it) I had my own room.
2. I wouldn't say that there is any special precautions and definitely no masks have been worn no matter how bad my flares have been.
3. Gloves do get worn, but not always. Gloves are more for nurse, rather than patient protection in my opinion. Gloves can get dirty just as easy as hands. This means that you would need to put on a new pair of gloves after everything you touch to prevert contamination. I suspect gloveless nurses wash their hands more frequently than gloved nurses change their gloves.

Not sure if those answers were any use to you.

Alysia
07-14-2015, 12:10 AM
Thanks for the input gilders. You are so kind.
its intersting observation about the gloves. I didnt think about it.
I still need to think about this issue more. It seems that everywhere they are not keeping enough sterility as they should. Too bad.

Pete
07-14-2015, 12:14 AM
When I was admitted at Ohio State's Wexner Medical Center, I was placed in a pressurized isolation room in infectious diseases. I had a private room. For the first four days, I never saw a full face (except for my wife). They always wore masks, used disposable gowns, and gloves. Once they determined I was not infected, they relaxed the protocol a bit - no masks, gowns, or gloves. Before anyone touched me, they always used hand sanitizer (dispensers in every room and in hallways and at nursing stations). I was diagnosed on day five. No downgrade to protocol as they now knew that I was susceptible to infections more than they were. I believe I got care at a very high standard.

Alysia
07-14-2015, 12:18 AM
When I was admitted at Ohio State's Wexner Medical Center, I was placed in a pressurized isolation room in infectious diseases. I had a private room. For the first four days, I never saw a full face (except for my wife). They always wore masks, used disposable gowns, and gloves. Once they determined I was not infected, they relaxed the protocol a bit - no masks, gowns, or gloves. Before anyone touched me, they always used hand sanitizer (dispensers in every room and in hallways and at nursing stations). I was diagnosed on day five. No downgrade to protocol as they now knew that I was susceptible to infections more than they were. I believe I got care at a very high standard.

Thank you for sharing Pete. Sounds the best. This is how they should treat immunocompromised patients. BUT I suspect that they were mostly afraid to get infected by you ? And not to keep you safe ? Was that the case ?

Pete
07-14-2015, 01:13 AM
You're probably correct. Initially, they thought I might have had TB. After a couple days on IV antibiotics, they figured it wasn't that and the process of elimination to get to a WG dx began.

kaysee
07-18-2015, 04:47 AM
Hi Alysia, Regarding my last two hospital stays.
1. I am not guaranteed my own room but I had my own room. I think the hospital has gone to only single rooms but I'm not sure of that. I always inform them right away that I have WG regardless of why I'm there. I usually is related to why I'm there.
2. I wouldn't say that there was any special precautions to keep me from infections and definitely no masks have been worn. On the last two visits I had a lot of procedures/tests done and no one ever wore a mask.
3. Gloves were worn when they drew blood but not for other things like blood pressure and temp and medications.

Alysia
07-18-2015, 05:46 PM
Thanks Pete, gilders and Karen for your input.
so it seems that they dont care much about us being immunocompromised ?
Btw in Israel if I go to the labs and there are a lot of sick patients they let me in first by a different door. And nurses always use gloves and change them often. Maybe because it is so rare in Israel that they are more cautious.

Alysia
07-18-2015, 05:49 PM
Another question. Do you think that they should be careful about us in hospital, or is it just a fearful wish ? How many of us got infections as a result of uncaring hospital ? Phil for sure. But others ?

Jaypfei
07-18-2015, 08:39 PM
When I was first hospitalized they didn't know what was wrong with me. I had more tests done than I cared for. I had lung biopsy, scrapings taken from my inner ears and then a mastoidectomy. They were very thorough and sterile when coming into my room. Because one of the ear biopsies showed trace mrsa that changed the whole routine. They gowned up with masks and rubber gloves. If I left the room I had to gown up, rubber gloves and mask. They made it pretty clear that they'd prefer I not even leave my room. Hubby had to gown up as well. Food came in disposable containers and was disposed of in my room trash can. Anything brought into the room stayed until I left and I suppose was destroyed when I left. I was treated very well til the trace mrsa. Then felt like a pariah.

As an after thought, being as it was only trace mrsa, it could have come from the hospital, staff or how the sample was handled. I'll really never know, but I had no infections from any of the procedures.

Alysia
07-18-2015, 10:37 PM
When I was first hospitalized they didn't know what was wrong with me. I had more tests done than I cared for. I had lung biopsy, scrapings taken from my inner ears and then a mastoidectomy. They were very thorough and sterile when coming into my room. Because one of the ear biopsies showed trace mrsa that changed the whole routine. They gowned up with masks and rubber gloves. If I left the room I had to gown up, rubber gloves and mask. They made it pretty clear that they'd prefer I not even leave my room. Hubby had to gown up as well. Food came in disposable containers and was disposed of in my room trash can. Anything brought into the room stayed until I left and I suppose was destroyed when I left. I was treated very well til the trace mrsa. Then felt like a pariah.

As an after thought, being as it was only trace mrsa, it could have come from the hospital, staff or how the sample was handled. I'll really never know, but I had no infections from any of the procedures.

Thanks for sharing. I appreciate it so much.
it seems to me like in Pete's case that they were protecting themselves from you ?

mishb
07-19-2015, 10:21 PM
I was admitted for 5 days when I was first diagnosed, mainly so that they could do xrays of my joints, lung tests, kidney tests etc

For the first 3 days I had a room to myself, even though it was a 6 bed ward.
On the 3rd day they brought someone else in and the ward nurse went beserk and told them to take that person to another room,because I couldn't have germs around me.
On the 4th day, after all of the tests were done, they eased off a bit and they put an elderly lady in the room with me, but over the far side, away from me.
On the 5th day, all beds were occupied and I guess they didn't really worry about it, because I was going home.

The hospital protocol is to use hand sanitizer, which is in the doorway of every room, and the only time they really wore gloves was when they were doing bloods etc
If it was just to do my blood pressure, they just used the hand sanitizer.

I know that they weren't afraid of catching anything from me, because I had nurses come in to see me during their coffee break, to chat and also have a bit of a rest from the rest of the wards/patients.

Alysia
07-20-2015, 11:03 PM
I was admitted for 5 days when I was first diagnosed, mainly so that they could do xrays of my joints, lung tests, kidney tests etc

For the first 3 days I had a room to myself, even though it was a 6 bed ward.
On the 3rd day they brought someone else in and the ward nurse went beserk and told them to take that person to another room,because I couldn't have germs around me.
On the 4th day, after all of the tests were done, they eased off a bit and they put an elderly lady in the room with me, but over the far side, away from me.
On the 5th day, all beds were occupied and I guess they didn't really worry about it, because I was going home.

The hospital protocol is to use hand sanitizer, which is in the doorway of every room, and the only time they really wore gloves was when they were doing bloods etc
If it was just to do my blood pressure, they just used the hand sanitizer.

I know that they weren't afraid of catching anything from me, because I had nurses come in to see me during their coffee break, to chat and also have a bit of a rest from the rest of the wards/patients.


Thank you so much for sharing Michelle. No wonder that your nurses enjoyed you.... we all do ♡♡♡
Phil's nurses were also in love with him.. ♡♡♡
Your health system sounds much more decent and caring and responsible then any others around the globe. They need to learn from you.
hand sanitizier sounds like the best option. Better then gloves. There was some bottles of it in the hospital but I dont remember them using it. Phil asked for a bottle to himself and used it. But the stuff did not.
Btw, no such thing in Israel in the hospital. They have other kind of soap to use, old, red, with ugly smell and which make the skin irritated. Maybe this is why they use the gloves.

I should have taken my sweetie to Australia.... they would have treat him so much better and you would have come to visit us, Michelle...

whatthewhat
07-21-2015, 04:56 AM
"I will be more then grateful for every comment and sharing. if you write please say a word about the quality of that hospital.
1. when you are being admitted to hospital, do you get a sterile room/ isolation room, because of being immunocompromised as a result of the medications we are on ?
2. are there any special precautions that the staff keep while treating you, like masks, others ?
3. do the staff always use gloves or have to use them ?"

This has to do with Children's Hospitals, but I will off my opinions anyway :-)

The first time DD was admitted, prior to dx, she was put in a bone marrow transplant room, as they had no available isolation rooms elsewhere. She was there I think 4 nites before being transferred to an infectitious disease room. Almost every room at that hospital is single patient. On the bmtf, you would bootie, mask, & scrub upon entering the wing, scrub right outside the room and scrub in the room. Then the patient was examined ( or hugged!) And hen you scrub again on your way out. (My hands were bleeding.) Id rooms you never bootie, but you do mask, and you don't scrub on entering the wing but you do scrub and mask in what we called our room's foyer, and then again scrub inside the room. Once they determined she did not have anything contagious we could skip the mask. She wasn't immune suppressed very much at that point.

the 2nd hospital, where she stayed last November, after dx, she was put in a regular room, and that hospital has doubles. It was made clear she would not be around anyone infectious. In fact late one night a homeless teenager was moved in but got moved out real soon, due to worries.

In both hospitals there are signs everywhere saying patients / parents need to see personnel cleaning before examining patients. In the 2nd hospital that meant hand sanitizer.

Because they are pediatric hospitals they try to avoid masks and gloves (and their scrubs are always super cute lol).

MikeG-2012
07-22-2015, 12:22 AM
When I was admitted in 2012, I wasn't given any special precautions. I was newly diagnosed and there to have more testing, biopsies, etc.

All workers wore gloves, used hand sanitizer, but no masks, gowns, etc. Nut, at that point, I was newly diagnosed and not on any immune suppressant medication.

I was in my own room, but the new hospital does not have any multi patient rooms.

Overall, I don't think I could have had better care than I received at the Monroe Clinic Hospital in Monroe, WI.

Alysia
07-23-2015, 02:40 AM
Thank you so much Mike and wtw for the input. as a general assumption, it seems to me that it is a matter of the quality of the hospital. the better one, it will be more clean, more precautions, etc. it is just if one is lucky enough to be in the right hospital. I am glad for you and for Michelle that you did.
there is something which is beyond, which I sense from the posts, it is something to do about how much the hospital works like a "factory" for its own sake (more patients in the room, more money, etc) or how much it respects the patients and put the patient in the center. this is def your hospital Michelle, and I guess also WTW (Thanks God that childern get more caring, compassion and respect).
unfortunately this was not the case in Phil's hospital. they only care about themselves. full rooms to gain more money. less cxr's. not inviting wg expert, filthy floors, dirty lazy nurses.... I am starting again to be angry so I better stop here.
and it is not a matter of how crowded or rich the hospital is. my hospital is very poor, small and crowded. still, when I come for my rtx, in order to protect me, they save a place for me near the open balcony with lots of fresh air, they changed gloves all the time, and most of all : THEY LISTEN.

still very angry so I must write the following:
canadian weggies friends: if you can, STAY AWAY FROM FOOTHILLS MEDICAL CENTER IN CALGARY. ITS A DEATHTRAP.

mishb
07-23-2015, 08:08 PM
Alysia, I was very lucky to be newly diagnosed and the registrar knew all about WG.

Australian hospitals are just like any others I'm afraid. Yes they do use hand sanitizer, but they are so overcrowded that we constantly hear of people being sent home too early, just to make room, or, of people still on beds in hallways.
People seem to be getting sicker and the local doctors cost money to go to, so everyone tends to go to the ER instead and this leads to overcrowding and long delays in the waiting rooms. They don't call them waiting rooms for nothing.

I tend to think that nurses are such wonderful people to do what they do (the vast majority of them).
We also have some very crabby nurses that don't tend to give you the time of day :glare:
Everyone is human and have bad days and good.

What I noticed in the letter that you received from the hospital, is that they are going to look at, and probably change, some of their procedures/protocols and this is something that you, and all of us, should be thankful for. This was your doing :thumbup: You were the voice that asked them to justify themselves and you have helped them see the need to change their systems.
This part of the letter is a fantastic outcome and means (to me), that no-one else will go through what Phil had too :crying:
The nursing/medical units that your letter was directed to, will certainly always remember that beautiful, and sometimes wild/crazy, lady from Israel, who fought for/stood up for, the man of her dreams.
Bringing this to their attention is the best thing that could have happened, not for Phil unfortunately, but for many others to go there in the future, and for this, we all thank you :love:

I hope there will be a lot of changes to come out of what Phil went through, but sadly, we will probably never know.
It just shouldn't have happened in the first place.
Being in the medical field yourself, I would love to see you harvest your anger and challenge all hospitals to make the correct changes - for patient care in regards to cleanliness/sterility.

Sorry for my waffling.....but I say again, THANK YOU

Alysia
07-24-2015, 01:36 AM
Alysia, I was very lucky to be newly diagnosed and the registrar knew all about WG.

Australian hospitals are just like any others I'm afraid. Yes they do use hand sanitizer, but they are so overcrowded that we constantly hear of people being sent home too early, just to make room, or, of people still on beds in hallways.
People seem to be getting sicker and the local doctors cost money to go to, so everyone tends to go to the ER instead and this leads to overcrowding and long delays in the waiting rooms. They don't call them waiting rooms for nothing.

I tend to think that nurses are such wonderful people to do what they do (the vast majority of them).
We also have some very crabby nurses that don't tend to give you the time of day :glare:
Everyone is human and have bad days and good.

What I noticed in the letter that you received from the hospital, is that they are going to look at, and probably change, some of their procedures/protocols and this is something that you, and all of us, should be thankful for. This was your doing :thumbup: You were the voice that asked them to justify themselves and you have helped them see the need to change their systems.
This part of the letter is a fantastic outcome and means (to me), that no-one else will go through what Phil had too :crying:
The nursing/medical units that your letter was directed to, will certainly always remember that beautiful, and sometimes wild/crazy, lady from Israel, who fought for/stood up for, the man of her dreams.
Bringing this to their attention is the best thing that could have happened, not for Phil unfortunately, but for many others to go there in the future, and for this, we all thank you :love:

I hope there will be a lot of changes to come out of what Phil went through, but sadly, we will probably never know.
It just shouldn't have happened in the first place.
Being in the medical field yourself, I would love to see you harvest your anger and challenge all hospitals to make the correct changes - for patient care in regards to cleanliness/sterility.

Sorry for my waffling.....but I say again, THANK YOU

THANK YOU Michelle, for this beautiful touching post. You made me cry & laugh at once.
where in the letter of the hospital did you find that they are going to change anything ??? Did I miss something ? I just understood that they are not taking any responsibility. And so did Phil's mother understand.
There were all kind of nurses in that hospital. But if someone is doing such a mistake that kills a patient, he must take responsibility. It was not only nurses. Worse. The arrogant docs etc.
I worked 11 years at mental hospital as clinical psychologist and quitted not only because of WG but also because I was tired of fighting in vain against the stuff to treat the patients with more respect.
maybe my standarts are too high. But I never demand something that I dont do myself.

And yes, they will never forget me & my sweetie in Foothills medical center.

mishb
07-26-2015, 08:19 PM
Maybe I should read the letter again :unsure:

gmyi
08-04-2015, 12:41 AM
About that issue you can get some information from the following link about patient safety this knowledge I have from my last job as safety coordinator in biologic lab
Patient Safety | Links Medicus - Authoritative Free Medical Education Resources (http://linksmedicus.com/category/main-menu/patient-safety/?gclid=CjwKEAjwovytBRCdxtyKqfL5nUISJACaugG1D33qy9f gALAW0a4XaI1i-CKCKIYA3KdrIe2mLRPa_hoCBnLw_wcB)
you can use this guide lines to what to demand from the hospital
in one of my hospitalizations I noticed that then did not empty the needles that they used for blood test every day from the room I noticed that to the department director and they fix it
if you know the rules you have to demand to work in a safety way

Alysia
08-04-2015, 02:05 PM
About that issue you can get some information from the following link about patient safety this knowledge I have from my last job as safety coordinator in biologic lab
Patient Safety | Links Medicus - Authoritative Free Medical Education Resources (http://linksmedicus.com/category/main-menu/patient-safety/?gclid=CjwKEAjwovytBRCdxtyKqfL5nUISJACaugG1D33qy9f gALAW0a4XaI1i-CKCKIYA3KdrIe2mLRPa_hoCBnLw_wcB)
you can use this guide lines to what to demand from the hospital
in one of my hospitalizations I noticed that then did not empty the needles that they used for blood test every day from the room I noticed that to the department director and they fix it
if you know the rules you have to demand to work in a safety way

Thank you for the post and link. I appreciate it very much. I will check how can I use it. Looks like a great info site for all of us. We need it.