Wow - I can't believe the "it's not my job" mentality of the Surgeons in the Atlanta area. My first posts a few weeks ago detailed my husbands surgeries and my post #77741 went into the surgeon issues -- but today really takes the cake.

We now have a third surgeon who today put in the PEG Tube. Chris (my husband)already had an NG tube from the date of the 1st surgery (5/21/08). The NG tube was supposed to be removed today when the PEG tube was put in. Well, the surgeon did "cut" the NG tube in the area of the throat, but since the NG tube was sewn in with a few stitches in his nose, the Gastro surgeon said he couldn't remove that part. His words -- I didn't put the stitches in, so I can't take them out. What is wrong with this picture?????

The entire reason for the PEG tube was because the NG tube was going to be a problem during radiation and therefore needed to come out. And now it's still there???? We now have to make another appointment with the Head & Neck Surgeon to get the rest of the tube taken out.

I am about to take a clipper and just go in there myself.

Surgeons now rank at the very bottom of the medical totum pole as far as I am concerned. If there are any surgeons in the Atlanta area reading my posts, I hope you realize that you guys and gals are all just way too full of yourself and don't give a CRAP about what your patients have to go thru just to get a simple simlple simple procedure done.

What is so wrong with all of you surgeons? Is it an insurance issue or are you too afraid one of you might step on your future bosses toes.

I have received some satisfaction by complaining to my insurance company about the "Doctor Issues". I am in the Atlanta area as well and it is hard to find good doctors of any kind here.

I have had several health care people say that my husbands peg is in the wrong place but when I bring it up in my doctor community they get crazy with me.

I am sorry you are having a hard time!!

I am afraid that my insurance is Tricare (Military retired). Trying to talk to them is like trying to talk to a brick wall.

I did just call get in touch with the office where my husband gets his rads and left a message for the RO that since he is the one who sent us to this Gastro surgeon, but the surgeon didn't complete the job, I expected him to make sure the procedure was completed before my husband left the hospital tomorrow, or I would be in there to remove the stitches myself.

Of course at first the RO's office said "well, there should be somebody at the hospital to handle that". I kinda lost it when she said that. It wasn't much longer before she said she would have the doc get in touch with me.

Karen,

Thank God your hubby has someone like you...can you imagine running this gauntlet alone as a patient with no one to advocate for you. It just amazes me how complicated simple things can get sometimes and the patient seems to suffer the consequences.

Keep your "Nurse from Hell" hat on...sounds like hubby needs a tough caregiver!

Deb

Hi Deb,

Thanks for the post. I really did have my "Nurse from Hell" hat on tonight. After 7 telephone calls and getting the patient care advocats involved at the hospital I finally got the Gastro doc to request that Chris be seen in hospital by an ENT before discharge, so hopefully, the rest of the NG tube will be taken out first thing in the morning. I guess when I went to the nurses desk and asked to see the Chief of Surgery they kinda knew I wasn't going to back down.

This incident is only one of many that I have encountered in "partial" care, but it was the one that sort of blew my top off since it was supposed to be such an easy, standard procedure.

Chris is in a lot more pain than he expected to be, but his nurse tonight was wonderful with him. I was able to leave the hospital knowing he would be taken care of by her. Those little things sure do help, don't they.

Nurse from Hell: That term is original (at least on this board)to JAM (Amy in the Ozarks)...she learned to be a tough advocate for her hubby. I remember saying to myself early in the game as I discovered that no one else was going to do this for me: "If it's to be..it's up to me!" It is a tough hat to wear...that of a caregiver and it is exhausting. I didn't feel the effects of it all until months after Bill finished treatment. I think I am still recovering.

Re: the pain from the PEG surgery...Chris should start feeling better in about three days...my Bill is pretty tough but he was very sore for about that amount of time. We were glad he had the weekend to recover before his rads started on the following Monday. So glad you were able to give up the nursing hat for the night feeling confident that someone was there for Chris..yes it does make a difference.

Hugs, Deb

Better if the spouse is the Nurse From Hell -- Then the patient becomes neutral and gets more attention (and maybe some sympathy for having to live with NFH <g>).

Altho I know full well that many tough caregivers before me on OCF can lay claim to "The nurse from Hell" moniker - I did make the conscious decision to wear that hat! It is not as easy a decision as one might expect because there are multible levels. The first involves your relationship to the cancer patient- in my case, my husband. Our relationship was based on decisions made jointly. As he went through radiation, more surgeries, chemo, etc. and got sicker, the "jointly made decisions" became more my responsibility-because the nursing was my responsibility and the medications he was on affected his ability to think clearly.
Whether he was in the hospital, going through radiation, surgery, chemo, I was the person with him, watching and recording what was happening, picking him up off the floor, cleaning up the vomit, watching his temp soar, whatever. Because I was on OCF day and night, I had a handle on what was happening and what we needed to do to help John through this, even when he resisted. His Docs were not at our house. the second level--I also introduced myself to his Docs as the "Home Nurse from Hell" and guess what- my phone calls were usually answered or responded to in short order. [we were 3 hours from his Oncologist and 1 hour from his Chemo Doc and a decent emergency room] The third level of my "nurse from Hell" hat extended to our immediate family-ie- John's son- who refused to believe how sick his Dad was- I didn't do well there, John died with his son still thinking he would get well and that we hadn't done a good enough job of fighting the cancer. The flip side of that is I listened to my Hospice nurses and called in family help [ I am lucky enough to have a daughter and daughter in law who are nurses] to be with us at home during John's last days. The Hospice nurse told me that it was a matter of days or weeks and I gathered my troops, made the final arrangements with the Minister, Coroner, Funeral Director, and then gave my full attention to John. The "Nurse from Hell" can do what needs to be done, hopefully with a GREAT outcome- but if not- you were in the fight all the way. Amy

TO Pete: I hope you are right that my being so "forceful" will result in sympathy for my husband and not the reverse. Even though I am a take charge type of person anyway, I didn't think that some of these issues would end up being battles. I had another battle this weekend with both the in-home nurse company (who never showed up) and the supplier of the feeding pump. It feels like it will never stop. It didn't help much that I ended up in the Emergency Room from a wasp sting this weekend too.

TO AMY: I already know what you mean about the 3rd level extending to family and friends. I have gotten so very over-protective of Chris, and making sure he does not try to do more than he feels like doing. It is hard when you are trying to stay positive and give family and friends the best outlook but at the same time have to turn away requests for visits or outings. It gives a mixed signal and is hard for them to understand. Our last outing was 9 days ago. He was feeling great that night, we had a good time. Everyone since then has said how wonderful he looked. Well, he hasn't had a good day since. All I can tell them is that he is tired and resting, but what they remember was how great he looked and last they saw him. I think it is everybody's way of trying to stay positive, not just for themselves, but for me also. Karen

I am very grateful to the medical community for all that they do, but given the high malpractice insurance, I think that sometimes they get into a mode of practicing "not being sued", instead of medicine...it seems to be a catch "22" sometimes. I have had my experiences with the surgeons and I do not like how they treated me or Jim - especially when it came to the feeding tube. We could never get it to work and when he finally said take it out, then they didn't want to do it and I had to become the "wife from hell". So they took it out against Dr.'s orders, which was written on the paperwork. Then infections set in for months and Jim kept telling them that they left something in, but no one could find anything. Finally we were referred to a wound care specialist and the morning of our appointment, Jim got to digging into his wound and pulled out "4" tacks that had been left inside when they yanked it out! He healed in (3) days....AND WE DIDN'T SUE THE SURGEON AND DIDN'T EVEN THINK OF DOING SO....and still don't! I did let them know they made a mistake and that they should listen to patients more and stop trying to practice "not being sued"! Feedback is a gift.

Hang in there - nurses from hell can be a good thing! Doctors and surgeons are just people like us and do the best they can - they chose a very difficult profession and some may not have made the best grades, but passed all the tests....

Paula

Paula,

I really do understand about surgeons being people and that things happen, often beyond their control. I just get so frustrated when their actions appear so much more like they just don't give a darn (not the word I wanted to use).

I am afraid that the only doctor I was able to speak with that night was the RO who had recommened the Gastro doc. I did end up appologizing to him because it really wasn't his vault. He only made the mistake of returning my call that night.

Part of our conversation went something like this: (keep in mind my words were laced with sarcasam).

ME: Dr. X told us that he was going to take the NG tube out.
RO: When he told you that he didn't realize that the tube was stitched into the nasal cavity.
ME: Are you telling me that Dr. X did not perform enough of a physical exam or a review of Chris's records before surgery to realize that?
RO: "long silence"..... I can't ask Dr. X to do something he isn't comfortable doing.
ME: He isn't comfortable cutting a stitch?
RO: There could be a problem with bleeding.
ME: Since Chris is in the hospital I certainly hope they could handle a nose bleed.

Anyway, the end result was that all of my complaining did pay off, with an ENT visit to Chris's room the next morning. He took a pair of scissors and cut the stitch. All done - less than 60 seconds.

I get too worked up trying to make everything perfect and it just isn't going to happen. I am so glad I have this forum as a way to let some of that anger out. Somehow, I need to learn the "Coping" part of this particular Forum.

On a better note, the plastic surgeon my husband saw yesterday was not as vague as he usually is. He actually gave us a timeframe for when he might consider another Free Flap. We weren't sure how soon after radiation that might be done and just knowing a timeline makes a big difference. The fibular bone that is making up Chris's mandible started to deteriorate after the infection.

But, that is months away and this week we only have to think about radiation.

Thanks for all of your input. It really helps.

Karen

Karen, hello there. I also live in the Atlanta area and had my treatments here. Where is your husband being treated? From what I have read I see red flags popping up all over the place. I am no different from any other survivor who hold 100% faith in the team and facility that did their job. I would love to discuss this if you would like to talk about it. Send me a PM with your phone number if you like. Bill B