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Posted 6/25/2013 2:54 AM (GMT 0)
My 10 AM, my doctor's nurse had contacted me.

Several things had happened that led to all the communication failure last week.

She was on vacation all of last week.  The doctor began a 2-week vacation last week out of the country.

When they made the recent switch from private practice to the Gibbs Cancer Center, they all got new e-mail addresses, and the old ones did not transfer e-mails to the new ones.  She just happened to look on purpose at her old account, and saw my e-mails.

She gave me a new emergency number, that I can use for any true emergency in the future, it will put me through to who ever is the oncologist on call at the time.  I put this number in a very conspicuous place for future use.

She is contacting my doctor (today, Monday) and promised I will have an appointment with one of the two neurologist that we talked about by Wednesday.  She is suppose to call me tomorrow with an update.

Also, she went ahead and took care of my next Fentanyl prescription so that it didn't become a problem with the doctor being out of pocket.  She just has to get one of the other oncologists to sign off on it.

She said in the future, to avoid confusion, not to e-mail, but to call first.  I did remind her that the doctor told me specifically to e-mail him following the Dr. "S" visit of recent date, so I was doing what I thought he wanted.  How could I know that he was going on vacation for two weeks?

It's all good, while I was in a lot of extra pain during that terrible 9-10 day period, it was still not a true "emergency" in the truest sense of the word.  It was just an escalation in my chronic pain world.  If I had thought I was in a dangerous situation, like something serious was going wrong inside, I would have been in our ER 2 minutes from the house in a heartbeat.

Hopefully, next time, there won't be so much confusion and mixed signals going on if I have another event.  I am glad this major move is behind them now.  As they say, "it" happens.  I am just happy that it seems to be resolved and shouldn't happen again.  Prior to two months ago, none of these kinds of things ever happened.  My doctor had always been easy to reach, great about calling me on his own, and always answered e-mails quickly, so I knew something out of the ordinary was up.

david

Posted 6/25/2013 3:21 AM (GMT 0)
I'm glad there was a simple explanation - ours was on a Disney cruise last week when we needed him. His nurse has also said not to e-mail - haven't yet, even though he gave it to us if we had issues. We did for another out of town trip appeared. He did not to like how we weren't responded to. Hope your meds kick in quickly.
Posted 6/25/2013 3:31 AM (GMT 0)
passages,

my doctor's nurse is the best. she makes a good mother figure with her patients, and when I have had extra issues going on, she really gets concerned. she's been a great liaison between the doctor and myself. I was betting money that she would come through once she saw what was going on, and she did, as usual. got to love a good nurse, probably why I am married to one.

david
Posted 6/25/2013 5:53 AM (GMT 0)
Good to hear...and to know your nurse is a "kind spirit"....that sure does help and having her "ear" since she is so supportive......

Take care.....thinking of you!
Posted 6/25/2013 7:07 AM (GMT 0)
I give you credit Purgatory for putting up with all to frequent " one hand not communicating with the other" in the medical field, local pharmacies, insurance cos, on and on. Its the new paradigm, forbearance is really the only way you will succeed any way. If these are the good old days I feel sorry for the upcoming generations. Mild vent thanks for the use of your thread.
Posted 6/25/2013 11:37 AM (GMT 0)
Glad to hear it worked out for you david. Communication with a doctor's office can be aggrevating. i found a urologist I really like, but it can be tough to get through to his office sometimes. Glad to hear the nurse is keeping things moving!
Mike
Posted 6/25/2013 12:11 PM (GMT 0)
David, glad to know things have worked out. I certainly can associate with your situation when things go wrong....it can be so frustrating. I have never had a doctor tell me I can email them...maybe it's something I should mention to all doctors I see. I always have to deal with the receptionist or his nurse and you talk about frustrating! Just had an issue last week with something my Uro was supposed to do....and didn't do and I could only talk to the receptionist. Even if they had to charge me for an email consultation/problem it would be great for my doctor's to be more accessible. And it makes me wonder how many others in the community are able to contact their various doctors through email/text or other media....or do you have to battle the receptionist like I do with just about every doctor I see?
Posted 6/25/2013 12:15 PM (GMT 0)
tdnjam, I think that as more and more doctors get comfortable with smart phones and social media they will be more accessible. Mine shared his email and cell phone # with me right away and he's answer each and every email right away. Some even on a Sunday. It's a great thing for patients and so reasuring.
Posted 6/25/2013 1:37 PM (GMT 0)
Thanks. Getting mad or ugly wouldn't have gotten me any further along, just had to keep being persistent and patience. I have learned the fine art of patience long ago.

And yes, both of the neurologist being considered take Medicare. So far, in my area, it was only this last doctor (the one that was never going to work out) that didn't/wouldn't take it. SC is a "poor" state, and doctors are use to seeing patients with only Medicaid or Medicare, perhaps even that makes a difference with doctors that opt out of the system. If they did that here, there wouldn't be as big a patient pool to choose from. I wonder if it's the opposite way in the more affluent states?

david
Posted 6/25/2013 2:33 PM (GMT 0)
I am amazed at the communication variances between patients and their specialists.

I can email or call Drs. Lam/Scholz and I'll get a reply almost immediately.

Yet, I also see a world-class specialist at Umich (Dr. H). It's at their "Comprehensive Cancer Care Center." One would think there would be top-notch communication with such a Center. On the contrary, they are TERRIBLE. You call and leave a message. A day or two later, someone calls back just to check what the message is. Then someone associated with the specific doctor calls back to confirme the message. Eventually, someone calls the doctor and gets a message back to me. I have NEVER been able to actually talk to this doctor.

In the last year, however, I've found it easier to contact her P/A. Her P/A is in the office Thursday and Friday so if I call early on Thursday, she might pick up or at least get back to me that day or Friday.

THIS IS NOT GOOD!

Mel

Posted 6/25/2013 3:44 PM (GMT 0)
There's no excuse for poor communication lines between patients and physicians in the age of internet and smart phones.  I am in frequent communication with physicians because I am a caregiver and advocate for my parents.  The large medical system to which they belong, which is associated with a university and medical school, has set up direct ways for medical communications.  We have not yet had anyone 'drop the ball' in the past three years that they have been members.
Posted 6/25/2013 6:44 PM (GMT 0)
I am not willing to trash my own oncologist over this event. He track record with me over 2 plus years has been better than excellent. Stuff happens, to all of us. People need to remember forgiveness, no one is perfect, nor are doctors 100% of the time.

I am much more interested in his outstanding empathy with my complicated situation, and his standard of care in dealing with me and all my issues. He's been one of the most genuinely caring doctors I have ever had in my life. And I have bragged about his long term nurse as well in the past, a great nurse can make a good doctor even better. She's really in tune to me, and to their other patients, and goes above and beyond on a regular basis. She was genuinely upset at this recent snafu in communications, and assured me, it won't happen again. I believe her.

david
Posted 6/25/2013 6:59 PM (GMT 0)
Sounds like you've got an excellent doc and nurse, David, and should keep them.  Danielle Ofri, a physician who writes a column for the NY Times, has written some excellent books on doctoring, that give a very human perspective. 

Take care and hang in there, Sir!

Posted 6/25/2013 7:01 PM (GMT 0)
Yep-- sounds like a glitche. At first, it sounded like he was blowing you off.

Hopefully that won't happen again.

Mel

Posted 6/25/2013 7:17 PM (GMT 0)
David,
Sounds like you have an awesome team there that really cares for you...glad your in good hands.
Posted 6/25/2013 7:52 PM (GMT 0)
I agree with those who believe you have solid uro and onc teams.  Hopefully now that everyone is on the same page regarding the new email and contact numbers, things should go more smoothly.  Hope these doctors are paying these good nurses who consistently save them and make them look good to their patients a salary comensurate with their value.  Somehow, I think not...  Hang in there David.  Soon it will be NFL season and your only complaints will be football related...
Posted 6/25/2013 8:51 PM (GMT 0)
Did I just see the word "Paradigm" being used here in the forum? I had to look it up.

I applaud you for being as patient as you apparently are with these glitches that seem to pop up constantly. Paradigm indeed!
Posted 6/25/2013 9:40 PM (GMT 0)
thanks one and all, feel like things are back on the correct track again, anxious for the next step.
--------------

aljt: eager for NFL time, but when you are a 43 year Patriots fan, there's nothing to worry or be anxious about, lol. Super bowl bound and know it.

david
Posted 6/25/2013 9:43 PM (GMT 0)
except who your tight end will be :)

We need a FF league set up in August for the season of just HW PCa members. I owe Ziggy one...
Posted 6/25/2013 11:43 PM (GMT 0)
never played the FF stuff, wouldn't know where to begin. Just a long term faithful fan to all my New England based teams. Still surprised we picked up Tebow the Wonder Boy, been the subject of much talk on the Pat's Facebook Page. My job there, is I am the spokesperson for trashing the Jets and their coach, Rex Ryan. Hey, everyone has to have a specialty, lol.

david
Posted 6/26/2013 1:20 AM (GMT 0)
Hi David, have had not much time, brother-inlaw not doing so good, but he has survived a bout of pnuemonia, hope you are coping ok, my wife has been a bit run down over all this so we are going to Fiji for 10 days in July, to get away for a rest.

Hoping all goes well for you my friend.

Mal.
Posted 6/26/2013 4:31 AM (GMT 0)
Mal, always good to hear from my friend.

Still sorry to hear about your b.i.l, doesn't sound good. My wife has also been run down, working long hours, and fighting some kind of bad chest cough for nearly a month. Nurses make the worse patients, as she refused to go to the doctor herself, despite my pleadings. Fiji? You lucky man, could only dream of going to such a place. From where I live, it might as well be a millions miles away. Afraid if I ever went, there would be no way I would want to return home. Enjoy your trip, perhaps you can share so photos with me on your return.

david
Posted 6/26/2013 5:38 AM (GMT 0)
Thanks David, didn't wan't to make you feel bad, we are doing a good job of spending the kid's inheritance, and who knows, with my PSA going up slowly, feel like doing all we can, while we can.

All the very Best David, will pass on some pic's when we get back.

Regards Mal.
Posted 6/26/2013 1:59 PM (GMT 0)
I don't blame you a bit, Mal. Enjoy that thing we call life as long as you can, and on your terms.

Closest I ever got to the Pacific islands were Hawaii, Guam, and Midway Island, not quite the same as Fiji or Tahiti.

Have the best of times, my friend

david
Posted 6/27/2013 3:31 PM (GMT 0)
Sorry, Sephie, with all the fray in here in recent days, forgot to update.

Yes, she kept her word. Yes, she got me hooked up with what I considered the better of the two choices. This doctor, we will call dr. "x", is board certified, no problems with medicare only, and has very specific with CRPS and other exotic chronic pain issues.

The new doctor's office is processing things, and trying hard to fit me in, they considered it an Urgent Request, so I was told I should get fit in pretty fast. Suppose to have the actual appointment date either today (Thursday) or no later than tomorrow. By Monday, my oncologist will be back in town on duty, in case something goes wrong and he has to get on the horn.

Still making progress on that front, thanks for asking.

david
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