Got a call last week that my chest port was infected and it was IMPERATIVE that I check into the hospital RIGHT AWAY to receive intravenous (vancomycin) antibiotics. Needless to say, I rushed in immediately only to have to wait 7 hours to get a room-and then an additional 2 to get the antibiotic started (after 2 nurses fumbling SIX TIMES to get an IV started in these HUGE never-a-problem-before veins!) @!$#@!$#!$@!$#@~!****
Got infusions for 4 days and finally talked the doctor into letting me get home care nurses to do it so I can actually HAVE A LIFE at the same time as treatment! Turned out that home care wouldn't TOUCH me as I'd had an itching reaction the first (actually second (!!??) dose and they just WON'T DO IT. PERIOD.
Found this out on Tues evening. Called doctor IMMEDIATELY and REPEATEDLY to get them to either re-admit me or administer it at the infusion center and have gotten ABSOLUTELY NOWHERE! My medical oncologist is out of town and the attending doc's office simply is not returning calls in a timely manner-to me or to my doc's staff. Been speaking with the team nurse who is just about as frustrated as I am!
WHAT the hell????????
WHY would a doctor who KNEW I was getting benadryl to counter an adverse reaction not know that home-care companies will not even CONSIDER giving a known reaction-causing drug???
HOW can a doctor's office who won't return calls remain medically viable? (Much less feel proud of the good they are "doing for society")?????????????
WHO the hell would stay with a hospital that allows a patient to fall through the cracks like this?????????
And now, after sleeping for the past 3 days-I'm hoping that my body is using the antibiotics I DID get and is finishing up the job of clearing it up-I don't know which end is up! I'm FURIOUS, but at who? And for what? I'm UPSET that basically I was just written off by a bunch of self-important officious people MUCH too busy to bother with minor problems like a terminal cancer patient's staph infection of his port; his LIFE LINE and ONLY possibility to live out a somewhat comfortable final portion of his life in reasonable safety; and finally, I'm SCARED. As hell. That the damn staph is still festering in that port that leads DIRECTLY to my heart.
Actually I feel great right now and my inclination is to chill out for the weekend, get some other things done, and get it checked out ASAP on Mon.
Thoughts? Similar experiences? Unwarranted advice? ;-p
Thanks for letting me bend your "ear" for a moment-I really had to get all this out
Gordon

Sorry to hear. Some things sound common, unfortunately. ER visits can run to 8 hours to 2 days here. Sounds like you could have been infected when the port was accessed by medical staff not following sterile protocol or something else, and assume they did a blood culture? I learned not to speed up any hospital discharge, and when it's time, it's time, and all that aftercare should have been worked out with the social worker before leaving. Maybe it was a home care attendant that was sent, as opposed to a visiting nurse, who is licensed to do more. Having had staph, MRSA, sepsis, the antibiotics were given for a much longer duration, like 10-20 days, I forget, but was no two days. Some places even take the port out. I would see your doctor for follow-up, call the social worker, and if any signs of infection are present, go to the ER. Good luck.

If this were me, I would put it in the form of a complaint in writing. You could do this to the attending doctor's office and also the patient advocacy service if there is one? Once it is "official" the doctor concerned will be forced to act if only to mitigate his own liability.

The other thing you could do is turn up at emergency and demand the completion of your treatment. This would work but it would be even more stressful and frustrating for you as you are likely to have to sit for hours again.

So sorry you are going through this - I understand your frustration (not a strong enough word, I know) and can only commiserate. Alex and I had similar issues when his lung collapsed. Alex's condition deteriorated until surgery became the only (and most dangerous) option. All because the damn registrar was too frightened to call the consultant in on a weekend.

People started moving when I made an official complaint to the hospital via the patient advocate and let them know that if anything happened to Alex, I would be pursuing the cardiothoracic department with everything I had. The head of department took over Alex's case and moved appointments so that he could see Alex himself at Alex's convenience. Alex could barely stand up at the time and I refused to allow him to sit in a waiting room with other patients with his immune system as weak as it was.

If you do decide to put your situation in writing, outline your fear of the infection either progressing or impacting on your treatment, and cc as many people as you can think of - your oncologist would be an obvious one, but possibly also the team nurse and the home care people.

If it were me, I would pack a print out of this history, pack a book and pack your jamies, then head back to the hospital to stake out a spot in the E.R. I think you shoud get the antibiotics your doctor prescribed and if there is no other way - head back to the E.R. While you are there, you can find the right person to send your complaints to. Horrid what has happened to you - my concern is to keep you well.

Donna

Thanks, guys, for the input! Not one to mince words, I'm going to put all this in a complaint letter with times, dates, etc and see if it shakes up some action. If nothing else, at least the same attending's office won't be able to blithely ignore any OTHER patients!

My kinda guy! Go get 'em!

Gordon, Ive been wondering how you were doing. Im so sorry things have been so difficult! Poor guy!!!

Writing a letter is a great start to setting things right. But please put your health first and get the antibiotics you need. Ask your doc if its possible to have a picc line and do IV antibiotics yourself at home. A visiting nurse can come check on your weekly and change the dressing. I did that for 8 long months. Taking the refrigerated antibiotics 2 times a day. It seemed like I was on that medication forever. Maybe that can work for you too. If not yes, head right to the ER and get readmitted into the hospital so you can get the medication you need to get well.

Please dont be a stranger, keep us posted. We are always in your corner!

Best wishes!!!

Many State Health department's have a licensing division that is responsible for ensuring health care facilities comply with state laws and regulations. You can file a complaint with the hospital license division and trained individulas will conduct an investigation. The state health department will help with information to file a complaint. For Georgia it's "Georgia Department of Community Health."

One can also file a complaint with Centers for Medicare & Medicare Services, CMS, at 1-800-Medicare.

Also, Quality Improvement Organizations (QIO's) to file a complaint. For Georgia it's

www.gmcf.org/AlliantWeb/QIOPages/GeorgiaMedicare.aspx

Also, the Joint Commission, formerly called the Joint Commission on Accreditation of Health Care Organizations or JCAHO. 1-800-994-6610 or www.jointcommission.org

Gordon, I found your posts originally after searching for "life after tongue surgery" and I want to add my encouragement and support as well as follow some of your personal "if I had to do it over" and general strategies.

Seems that I saw you post something to the tone of not rushing to surgery too quickly.

Since total glossectomy likely will be my next "card in the deck" I'd like your reflections.
Don't know the proper way to address this and apologize if this is thread jacking, but you seem to be a knowledgeable winner (10 yrs).

Call me a fan. Send me addresses, phone numbers, etc and I'll assist as I can. I relate to your complaints.
- Walt

Monday's update: it turns out that the attending doc's office DID call, but I spoke to many, many different people from many different offices and didn't know who was who. Got a curt call this morning from one of the attending's nurses, saying that we indeed DID speak last week, and she had said she was getting appointment times for me to finish the antibiotic. She gave me these times (Finally!!!) this morning and then proceeded to be extremely defensive- "I did MY part" and evasive- "It takes more than five minutes to set this up." She then proceeded to HANG UP on me when I asked her name. I know I can be a bit hard to deal with when I'm upset but all I wanted was to express my concerns regarding my health and question the (to me) INORDINATE amount of time it has taken. Why the hell would it take 4 business days (6days in all) to set up an infusion appt? Anyway, I called her back, offered to be her friend for life as long as we never spoke to each other again, and life goes on! Still fuming, but keeping it all in perspective. They never said life with cancer would be boring now, did they?!! ;-)
(and I DO realize that being a nurse these days can be extremely stressful...but so is being a PATIENT!)

Sounds like you took care of things, Gordon. Maybe the person you talked to missed the class on "Bedside Manner" or "telephone etiquette". Being a cancer patient has got to be the most stressful experience ever, followed closely by being caregiver to a cancer patient. I used to think divorce was the worst thing and most stressful that anyone could experience but compared to the above, it was a piece-of-cake! I would take names, dates, times of everything that happens so that you have facts to include in a complaint letter or email. Hope things go better for you.

Yes STRESSFUL, but they get paid and we get TO PAY!

Am FINALLY to start my last 3 doses of antibiotic this morning (Tues 7a) Ol' "cross" eyed table-pounder is gonna KILL 'EM WITH KINDNESS! You just wait 'n see! :-)

gladto see the humor back! LOL
keep notes next time, every call, visit. that way you can verify the facts. it gets awfully hard to keep track after only a few days. don

a good nurse despite being stressed would ne'er stand your issue, and someone who is defensive is often on, ha way for a reason... Like she knew she'd dropped the ball.

Good points one and all. I definitely thought that "methinks she protesteth too loudly" and I told her I was going to report her to the doctor, but it probably won't happen. (partly 'coz I DIDN'T make notes and have my story together, Don!) Life, for ALL of us holds its' challenges at every turn. I'm mostly upset that she didn't call me back before end of work on Fri to let me know that the "appts are in the works, but we'll have to wait 'till Monday", and that she didn't acknowledge my fears...after all, don't MY fears encompass the world?
Anyway, on track to getting the last of the antibiotics, and will speak with my own doctor tomorrow (Wed). Will post one last time on this thread to report...

"Kill 'em with kindness" does work, too. When someone is being difficult and you are extra sweet, it makes them feel guilty for being mean and makes it more likely for them to help you out especially if they are nurses or office assistants. THey work really hard and have influence with the doctors so it helps to stay on their "good side". Everyone concerned with my son's TX was always extremely helpful and considerate and I made sure to let them know I appreciated it.

Always liked the statement "Love your enemies, it makes them so damn mad!" Killing with kindness is a good idea. I'm a retired librarian, and when people would insist that they returned an overdue book, or even state that they never had the book, I always be patient and pleasant with them. Nine chances out of ten, they would show up with the book the next day, very embarrassed.

Spoke w/doc yesterday-ranted, raved and generally showed my ass. Doc was a but concerned but agreed That all in all, all is well. Even got a smile out of him regarding me and the nurse being lifelong pals as long as I don't have to deal with her again-ever. Am trying to get them to do cultures-want to know if infection is gone yet. Still killing 'em kindly but I suspect they think I'm up to SOMEthing!

[quote=gpk101]Spoke w/doc yesterday-ranted, raved and generally showed my ass. Doc was a but concerned but agreed That all in all, all is well. Even got a smile out of him regarding me and the nurse being lifelong pals as long as I don't have to deal with her again-ever. Am trying to get them to do cultures-want to know if infection is gone yet. Still killing 'em kindly but I suspect they think I'm up to SOMEthing! [/quote]

Ah, you're a man after my own heart!

This is easy advice to give, and hard to follow; but I suggest that you start keeping good notes every time you have an appointment, and when something like this happens again, start immediately to kick ass and take names. Report incompetent treatment like this to as high a level as possible and let the devil take the hindmost!

Good on ya, mate!