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"WTF"

wolfen's picture
wolfen
Posts: 1192
Joined: Apr 2009

Sorry about the title, but just didn't know what else to say. As you know, we are caught somewhere between the H&N and Lung Cancer. I can't really identify with any of the Lung Cancer posts so I guess you guys are stuck with me for a while.

For many years now, I have been presenting each and every physician we see with a list of hubby's current medical conditions(including heart device), medicines, and attending physicians. Now I know that we all would like to feel that we are of some importance when we seek medical help. WOULDN'T YOU THINK THAT THE PHYSICIAN WOULD AT LEAST GLANCE AT YOUR LISTS?

Last week we saw a Urologist who scheduled a Cystoscopy today. Today, I gave the nurse an updated medication list and hubby told her again of his pacemaker and other possible problems and of course, she said the doctor was aware of it. During the procedure, which was not successful, hubby again mentioned his pacemaker and CHF.  I, of course, was not in the room. He said the doctor immediately stopped the procedure and said "I didn't know you had a pacemaker. Let me get my stethocope and check your heart". Now don't that beat all.

Where do I select these great physicians from, you ask? Why, from my United Healthcare list of "Premium Physicians", of course. I'd hate to choose one that's not Premium.

Anyway, the bottom line is that the Emg. staff that mistreated him in Dec. tore something inside his penis and there is now a flap of skin inside keeping his bladder from emptying which will require hospitalization and surgery.   (Don't know all the right technical stuff for this) This is set for Feb. 22. Hoping this does not interfere with the teeth extraction which I was hoping would occur that same week.

In case I missed this part, lung radiation mapping is complete. There are two tumors(one overlapping the other) and I expect radiation to start on or around Feb. 26. Not sure about that yet.

Thanks again for letting me vent. It saves my throat from screaming.

Luv,

Wolfen 

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Dang, it's a shame when you give so much information and things are still over looked.

Short of personally holding their hand (or stapling the list to their forehead) and talking to each MD before a procedure what more can you do to get the message out.

Hmmm, visions of permanent marker listings and details on each body part come to mine...

Thoughts & Prayers for you, and some competent MD's an medical staff...

JG

wolfen's picture
wolfen
Posts: 1192
Joined: Apr 2009

It's funny you should mention markers. Of course, he has the nice black ones for his lung. I told him for the surgery next week to put a big red X on his penis and if they lay him on his stomach, get off the dam# table. LOL

As you can tell, I'm no longer a calm person(probably never was). I remember a few years back standing in the hospital hallway after several inept attemps at putting in a picc line in him, I resorted to screaming "Can we get a fu##### pic nurse in here?" At least, I got their attention and a proper nurse. Maybe it's time for that again. I like your stapler idea, also.

Luv,

Wolfen

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

My wife Shelley is the sweetest, most gracious lady around...

But when she was my care giver, she would kick ass when things like this would go worng...

Actually rather funny in some ways, if I hadn't been sick when she was persistant, I probably would have been shying away... The woman can be mean when it comes to her man, LOL.

JG

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

Wolfen,

 

Makes me wonder what the “mediocre physicians” list would be like.  I don’t know what else you can do?

 

Good thing humans are resilient, because we are dependant on other humans.

 

I am taking a page from the “Book of Phrannie” and putting you, your husband and your daughter in my pocket.  I always got better when she did it.

 

Best,

 

Matt

wolfen's picture
wolfen
Posts: 1192
Joined: Apr 2009

In all this confusion, it seems we need all the help we can get.

Luv,

Wolfen

katenorwood
Posts: 1820
Joined: May 2012

Wolfen,

You are actually calmer than I would be.  We have to remember in all our exercisions with different specialists that NO most only read what they deem pertinant to the procedure they are doing.  We have to be our best advocates and continue to make sure EVERYONE is on the same page.  I don't know if it's the assembly line type medicine of our day and age, or what.  I'm so sorry your husband has been put through the wringer.  Keep up the good work with demanding the best care he deserves !  You all in my thoughts, and please continue to vent any time you need.  This is a good reminder to us all.....we need to make sure they know us and our histories period.    Katie

wolfen's picture
wolfen
Posts: 1192
Joined: Apr 2009

If he wasn't so weak and sick. I'm actually calmer in my old age. LOL

So true about doctors. Specialists seem to  have tunnel vision.

I redid my list and in bold type surrounded by stars I put "THIS PATIENT HAS THE FOLLOWING MEDICAL CONDITIONS AND DEVICE".  If the doc is that blind, he needs to retire. LOL

I also told hubby to make sure the hospital staff understands that the black X"s on his chest have nothing to do with this surgery.

Luv,

Wolfen

Ladylacy
Posts: 468
Joined: Apr 2012

I understand completely where you are coming from and I am one not known for patience and people who don't do their jobs right while on the other hand my husband just stays calm and takes it all in.

For example, during his hospital stay this week for the collapsed lung due to needle biopsy, we were being told one thing by the nurse and something else by the doctors.  Then I found out that they were giving my husband blood thinners when they were told he was undergoing a biopsy on the 25th and wanted to know why they were giving him blood thinners to begin with.  The nurse told me that he had the right to refuse the blood thinners but he didn't and he finally said well you told me it was "necessary" when in fact it wasn't.  All the radiation and chemo he has undergone in the last 2 1/2 years has really taken a hit on his hearing and can you say chemo brain.  I asked why he was being given blood thinners to begin with since he is on a daily dose of Hydrea which is a chemo medication for a rare blood cancer.  And I also told her when she explained that they are giving the shot of blood thinner to all patients to warn off blood cloths, they since he was getting up and out of bed he certainly didn't need the blood thinners.  Then I proceeded to really go off and ask why his tube had been removed yet since we were told that the night before it would be removed if the chest x-ray was okay.  She said she knew nothing about that and it wasn't on his chart and that I was wrong.  I told her no the doctor told us that and that if there was a change they should have come in and told us.   After I got upset and spoke up, things started moving.

I am really beginning to wonder actually how safe hospitals are and it is very scary when people can't speak for themselves and for the elderly or very sick who don't understand exactly what is going on.

Wishing the best for you and your family -- Sharon

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Wolfen,

Wow! Sorry you have to deal with something like this. Unfortunately, intelligence and education doesn't equal common sense practices. I experienced a taste of what you're describing in my journey for treatment. It totally baffled my mind that one hand didn't know what the other was doing when it came to my treatment. And the reaction of arrogance when I questioned it sent me off. This is our lives we're talking about, not an add on to a cell phone plan. I swear, some of the examples given sound more like you're dealing with a corprorate giant as opposed to a healthcare institution.

We should never just assume anything. It never hurts to ask 2 or 3 times, especially when you hear conflicting information. I was asked a total of 8 times what was being done last week. Twice over the phone the day before and 6 times the day of the surgery. Even my surgeon asked me to describe what he was going to do in my own words.  

As far as that "Premium List"? There are resources to find out about the physician you're dealing with. I googled the heck out of the Team at Johns Hopkins and found a plethora of information, past histories, patient reviews and comments etc. But just because someone rates high doesn't mean they're right for you. Trust your gut. 

Here's to the highway to competency opening wide and soon with no traffic ;)

"T" 

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

What you are hearing by way of response is validation.  This kind of stuff happens.  I'd like to say it doesn't, and that your experience was unusual, but we all know it isn't unusual at all.  Unfortunately.  Do the best you can with your lists and try not to have a stroke.  We've been there too, my wife and I, and I'm a health-care provider.  You can't always chose a healthteam that won't do this, even if you try. 

 

Pat

HobbsDoggy
Posts: 165
Joined: Feb 2013

Wow what frustration.  I simiply cannot understand why doctors will not talk to each other.  Some doctors I should say.  Its like I do my thing and you do yours and if it all happens to work together fine, if not oh well.  My docs seem good but just won't talk to the other doc.  I asked them to please talk to a clinic where I got a second opinion and had some procedures done.  No go.  I wonder if they would be OK with that if it was a member of their family?

The clinic I went to did a great job of coordination and working together.  I could not get all my treatment there due to distance from my home and family issues.  Big mistake.

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

At the end of the day, you gotta take control and drive the bus. Even under the most integrated CCC, you still need to manage your care. For example, YOU have to read and learn and become knowledgable on your own if you want to maintain a sense of modicum and dignity and not freak out. YOU have to know enough to know what smells right, what you are hearing makes sense, and what you see happening follows the many stories of those who have travelled the road ahead of you. Sure, you may pass in winter and they in summer but you will still get the same sense of the lay of the land and you will cross the same major junctions along the way.

For me, I was a bit concerned not having ALL services related to my care and treatment under one roof. As the journey unfolded, I see that even large institutes use a network of providers for various things. For example, the PET/CT work is done at an independent imaging enterprise, one that makes the heavy investments and offers services to all in the area. YOU need to double check and make sure all the paperwork is, in fact, flowing as it should.

It servers a couple purposes. First, it allows you to feel you are in control and on watch duty ensuring your care is going as planned -- yes, you should have a clearly written plan -- and second it offers YOU the opportunity to read and understand and digest all that is being recorded. This will surely prompt further learning on your part and hopefully good questions to better understand YOUR unique case and plan of attack and progress along the way.

don

http://cognacom.com (personal journal)

 

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Ahhh a face to the name... welcome DonFoo...

JG

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

I felt compelled to post the pic now as my hair is falling out. LOL. I'll post the after pic in a few days. Tongue Out

wolfen's picture
wolfen
Posts: 1192
Joined: Apr 2009

And for your words of wisdom and comfort, and for putting up with me.

Don, I also thought it would be great to have all necessary physicians under one roof. That was one reason I chose MDA, in addition to the fact that they're reputed to be among the best. But alas, I found that they really do not have physicians outside the realm of cancer. Their solution was to suggest I call the Banner patient referral line which could give me names of physicians who had privileges at the hospital next door. Then I ran into problems such as their cardio referral having no idea what a Medtronics pacemaker is, or having to wait two months for a Urology appt. despite my sense of urgency, or our doctor has withdrawn his priveleges at that hospital, and on and on. So I guess I have done the best I can. Although I do like MDA, I didn't find that you have one person there that is supposed to coordinate all you MDA care, as represented in their ad. Even within that organization, the left hand doesn't know what the left hand is doing.

Take care,

Luv,

Wolfen

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Ahhh a face to the name... welcome DonFoo...

JG

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