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Reply by janey49
22 May 2015, 4:54 PM

Thanks so much for all of your kindness. The sag continues today. We are being told too get her out of Sania to London Hopsital for a respiratory assessment and referral to Parkwood. Fingers crossed.
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Reply by janey49
22 May 2015, 4:55 PM

Excuse spelling mistakes. Sarnia, saga
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Reply by KathCull_admin
22 May 2015, 6:07 PM

Hi
All the best in that referral Janey49 - will be thinking about you. Razz you are a wealth of understanding and information - valuable for me as well to know this - as you said IPF is not well understood.

The spelling mistakes are a result of the system not you Janey49 - at this point only Colleen and myself can correct if asked.  It thought 'sag' might be a very good way of describing things.
Katherine 
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Reply by Razz
22 May 2015, 10:11 PM

YES, YES, YES.......  this is good news although I know how difficult such a move is.  What it tells me is that the doctors in Sarnia are now willing to confess that they don't know how to correctly provide medical help to your Mom.  This is a good thing!  And don't think of it as a means for them to get rid of her, even if it's true it will be a good move for your Mom. The respiratory assessment is a great idea as then they can also monitor her oxygen needs and also how far the disease has progressed.  I'll keep my fingers crossed that this specialist will be familiar with IPF but you may want to be prepared to educate him if he is not.  

The lack of oxygen can really make so many things worse and effect a lot of different functions of your body.  And because you Mom is not getting enough oxygen then naturally she is struggling and that in turn would make anyone anxious!  You can't overdose on oxygen but you sure can have some major troubles from a lack of it!  

I know this must indeed feel like a saga ..... but to me this sounds like a positive step forward.  And for heaven's sake don't worry about the spelling errors we can all read "forum short hand"  And heaven forbid that I should try texting anyone .... now that's a trial by tiny buttons for me.....spelling is hardly ever correct.   

Please keep informed when you can and for what it's worth I feel good about this move.  

be good to you - Razz  
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Reply by janey49
24 May 2015, 6:14 PM

Well things haven't went well. We are black balled by the Pallative Dr.  Mom is extremely anxious, they are telling us morphine and hydro-morph are for pain. Meanwhile she has been on these for well over 2 yrs.  This Dr., had ordered all of this in conjunction with her family Dr. Spoke with family Dr. Whom was not notified Mom was in hospital. They did not have her down in the Hospital either. I mentioned her name yesterday to a Nurse and she eagerly wrote it down. I know we are going to be dumped. The family dr. Is not a Pallative Dr. And does not have privileges in London or Sarni. We spoke with an intake person at Parkwood in London. They said; "this was cruel and they do not understand the disease." They recommended gettin her sent to London for a symptom assessment by the lung specialists there. They would refer her then to Parkwood and they would receive her. The problem is no one will send her. Any suggestions. Exhausted and in dis believe.

janey 
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Reply by Razz
24 May 2015, 7:38 PM

Oh Janey I don't know why someone won't just send her. Wouldn't it be just a transfer from one hospital to another?  It boggles the mind.   I really and truly don't know what to tell you.  This is just awful.  

The CPFF recommends 2 different specialists in London:
 London, ON – London Health Sciences Centre – Dr. Marco Mura
London, ON – London Health Sciences Centre – Dr. Rob McFadden
but I'm not sure what good that information is to you at this point.

Razz   
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Reply by janey49
25 May 2015, 12:12 AM

Oh Razz you are an ange. Dr. McFadden diagnosed Mom. We called his office Friday and the secretary was appalled. Stating; " they don't understand her disease". They will call us Monday after she speaks with Dr. McFadden. He is semi retired and not seeing puts., but she said will have some good ideas.  The Pallative Dr. maddeson does  not like us. He doesn't like being questioned. So my Mom suffers. It seems from the Nurses he fights with a lot of families. I am not sure how that is a good thing. Just left Mom and feel sad. Feel like we are walking on egg shells. Let's hope someone like Dr. McFadden help tomorrow. I know he is going to discharge her back to the family dr.

thanks so much for the support and suggestions.
Janey 
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Reply by JennJilks
25 May 2015, 12:28 PM

Janey,

I'm glad Razz got you going. Let me add to this...
I would suggest that you document everything that has happened, as you have here. 

Once your mother's situation is settled, I would suggest contacting the College of Physicians and Surgeons and make a complaint about any or all of these doctors. They are wonderful at the College. When they call a doctor to investigate, the doctor will jump. High.

I had to do this for my late father's doctor. You need not do it now, you are busy, but make sure you have dates, places, times, the doctor's names. Record, as best you can, the words the doctors used with you, when you were questioning them. It will make you feel better (trust me!) and you will improve services in the long run. 
This is criminal behaviour, treating your family like this. 

My story: the long-term care home and I tried to track down the doctor affiliated with the LTC for 3 days to up his pain meds on his last days of life. The ativan (contraindicated for people with dementia) wasn't doing it, and he needed morphine injections. 
He was in pain, no one believed me, as he would sing when he was in pain. I knew it. The doctor wasn't answering the LTC calls. They told me to call him. This isn't the correct protocol in LTC.

The College sent a wonderful doctor to question this doctor, they improved the method of contact, and she sat with the nurses in the LTC and improved some of their protocols.She got back to me and I was very satisfied. 
I would be happy to help you with it, if you like.
  All the best. Keep us posted!
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Reply by janey49
25 May 2015, 7:12 PM

Thanks so much Jen/milks that is what we need to do. Waiting too hear of we get some help today. Mom is being discharged tomorrow.



janey 
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Reply by KathCull_admin
31 Jul 2015, 6:17 PM

Hi 
I am sorry it has taken me so long to get in touch with you Janey.

First off - how are you doing?  Was your mom able to get the needed help? 

Take care
Katherine
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