Author Topic: venting about hospitals  (Read 629 times)


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venting about hospitals
« on: January 26, 2020, 06:53:30 AM »
I just returned home from having a complex knee replacement, so please allow me to vent.  I t was good hospital, and in general the care was good but there attitude toward sjpgren's left a lot to be desired.  Very few had ever heard of it and were not really interested in learning about it.  I got a better response when I told them it was similar to lupus.  The biggest problem came with my medications.  When I showed them my long list, the general response was " which ones do you need?"  They only cared about those that required a prescription,  I got a little more interest when I told them that I had wanted to decrease my medicines and had gone over the list with 2 different pharmacists each of whom had agreed that I needed them all.  I had many copies of my medication which I widely distributed only to find out that no one looked at them.  I had a lot trouble post anesthesia and finally got them to realize that some of my problems might be missing my prednisone, plaquenyl and losartant - they switched my bp medication and my body responded by me passing out. Well the good news is I am home and back on all my medications - with only a couple of necessary changes.  I now have a new knee with rods to stabilize, my legs are straight and my ankles almost come together.  For that I am thankful.  In a few minutes I meet my visiting nurse ane will hear her opinion of all my meds.


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Re: venting about hospitals
« Reply #1 on: January 26, 2020, 03:02:14 PM »
I totally understand. Glad you made it through the post op phase without having a totally melt down.

I am a RN and try to keep up on all 5 of my autoimmune issues. About a year or so ago I needed to update my new pharmacy with all my meds. I decided to make a list of all meds both OTC and prescriptions. I then decided to write down all my doctors, their addresses and phone numbers plus all my allergies. Little did I know that at 7 AM the next morning I would be in an ambulance on the way to the hospital with a gram negative urinary tract infection.

Now, this is where I sure relate. Doesn't anyone read the women's magazines anymore...they do articles on Sjogrens and Lupus once in a while. I spent the 5 days in the hospital explaining what autoimmune diseases were and what Sjogrens was. Like you telling them that Sjogrens was related to lupus helped some.

I spent the whole 5 days expelling why I needed some meds and making sure that they gave me my prednisone. The nurse in ER was getting ready to send me home when I finally had to tell him, listen, I suffer with health issues all the time. If I am down flat vomiting, running a low grade fever, etc I am sick!!!!!! A little later my blood culture came back positive  which really shocked my nurse.

On a cheerful note...I had taken the sheet with all my meds etc and doctors written on it and told the ambulance people to make copies and give it to the doctor or nurse at desk. A few hours letter I heard a foreign speaking woman coming through the hall and saying, yoo-hoo where is mrs.s. She walked up to me and said with a cheerful voice....Oh thank goodness you look better in person than you look in print. She was such a keeper for a doctor. And she understood the situation. She had also taken care of my hubby several times in ER prior to his death.

My only suggestion is that we keep trying to communicate with people when we have to be hospitalized. I have been known to write a note to my surgeon and anesthesia filling them in on what is important. You would think they would know but I guess the word just doesn't get out the way it should. Thanks for you is important. Irish


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Re: venting about hospitals
« Reply #2 on: January 26, 2020, 05:06:16 PM »
Dear Katie1111,

I understand completely.  My worst recent experience happened because I chose the NEAREST hospital ER (2 miles away).  I had an emergency, it was 4 am, so I opted for the closest.

The entire experience was a nightmare, including major medical mistakes, starting me on meds for a UTI when I had never given them a urine sample, and completely ignoring my medication needs.  I had even BROUGHT the meds.  sigh

Next time I will go the extra 8 miles to a much better hospital, or even the extra 12 miles to the hospital that has all my records (Duke Raleigh University Medical).

I'm fortunate that I have good choices.  I plan a knee replacement procedure in the next two years.  I hope I can 'set everything up' ahead of time.

Regards, and SYMPATHY!  Elaine
Female-Elaine,79-CVID-pSJS-WMD (Eylea) C-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om. 3-Naltrexone-Esomep.