Institutional Disrespect

[SDianneB]

Ok, we need to clone this Jim person! There are a few like that in my life too, I'm glad to say. In particular, when I go in every day for radiation therapy, I see smiling faces and cheerful, supportive people - without question. I brag on them to the Radiation Oncologist every week, and he's insistent that patients let him know personally if they are ever treated in an inferior manner. I'm sure it's his attitude from the top down that keeps the best people working there and gives their patients these kind of angels to come in contact with every day.

There are a few nurses where I go for chemo that I know to be good ones by now too, and I try to get them when I go. I have great veins, but it takes someone who knows what s/he is doing to find them, and I'm sometimes amazed at people who do phlebotomy for a living and don't know much more about it than I do. A few of these nurses are great though -- it takes them seconds, and they are like "nothin' to it."

My Oncologist I'm not so crazy about, but I adore the Pulmonogist (he literally saved my life when I first got sick and was hospitalized) and the Radiation Oncologists - the main one, and the others I've seen since starting treatment. I feel so very fortunate to be in such good hands.

Dianne (who wishes she lived closer so she could go with you for chemo, and then sneak you out one night so we could go TP the houses of those awful doctors)

[lilyjohn]

I have the same question. Why does the patient have to see the doctor each time before chemo?

The clinic Johnny went to had several in the region. The doctors would rotate from one to the other. We never knew ahead of time witch one he would see tho most of the time it was one of two. In five months of treatment he only missed three weeks without seeing his oncologist. In that period of time the doctor may have listened to his lungs three times. I seriously doubt that all of the time with his doctors added up to a whole hour. My question again is why?

The blood test was done and the information entered on his chart. The nurse would take his vital signs and leave us waiting for the doctor. We were fortunate that we never had to wait that long. I believe the reason for that was that the doctor never did anything. He would look at the information that was there then send us on to chemo. Sense Johnny had no other insurance those visits were billed to Medicare. I saw those bills. For that one or two minutes maximum Medicare was billed $136. No wonder they are in trouble Those things could have been done by the nurses at chemo. They knew as well as the doctors what to watch for. If something was amiss they could have then sent him to the doctor. It was not only waisted time but waisted money.

Johnny had an in home nurse that would come twice a week. She was not only wonderful but suportive. When the anxiety started she saw and tried everything to get us help. Later I learned that she did that while her own dad was all the way across the country dying of lung cancer that had not been diagosed until he was dying.

After the thoughtlless remark of the chemo nurse Johnny developed extreme anxiety. He started with both panic and anxiety attacks. Often having as many as a dozen in one day. Believe me when I say they are quite different in the way they are manifested. His in home nurse sought help for us from his doctor. She requested that Johnny be tried on Paxil. She told what she had witnessed and we were given a sample to try. Before getting the Paxil Johnny took one extra Ativan pill one day. One milligram more than the two milligrams that were prescribed for him(he did this with the permission from his doctor). That night was a nightmare. He had a severe reaction to the Ativan known as Paradoxical CNS syndrome. He hillucinated and had nightmares for 8 solid hours. After that he was terrified of the Ativan and so was I.

When we got to his doctor that Friday we asked for a prescription for the Paxil because it seemed to be helping. His doctor that day(not the one who gave us the sample) told us that he was not having real panic attacks but asthma like attacks and under those conditions anyone would panic. He refused to give the Paxil. The next night Johnny ended up in the emergency room having a panic attack so bad that his blood pressure was 217 over 122 and his heart rate was 160 and climbing. Everyone there knew that he was having a panic attack. He was just lucky that it didn't bring on a stroke.

Because he had nothing for the anxiety he decided to take the Vicodin left from his July hospital stay. That only made his problem worse because he became addicted to it mentally. It did nothing to stop the attacks. They got steadily worse. His nurse sent a FAX to the other doctor requesting the Paxil and discribing Johnny's condition and what she had witnessed. We waited but never heard one damn word. His nurse then wrote a list of questions for Johnny to give to his doctor. The last question on that list was another request for the Paxil. It was our luck that the doctor there that day was the one who had refused to give him the Paxil. He just glanced at the list and never answered one of those questions. He never mentioned the Paxil.

Two weeks later another visiting nurse noticed that Paxil had been ordered for him the day his nurse had sent the FAX. It had to be in his records the day his doctor saw that list of questions. He had to know yet we were asking for it again. Why didn't he tell us that it was ordered? Why was it never called into the pharmacy? It could have been an oversight by the nursing staff but I will always believe it was because that doctor stopped it. Why? Because we had brought the idea to him. We had gone behind him to the other doctor when he refused it. His damn ego was just too big to accept that. In the end that is what cost Johnny his life.

On another occasion the nurse had told us that the next time we came he would need a blood test(that was during a time off from chemo) when we got there that day he was just called to see the oncologist. I had to remind her of the blood test.

I believe there is one simple answer to all of the whys. It is because sense corporations have taken over the medical profession the bottom line has become more inportant than the humanity of it. The business of medicine is more important that the people seeking their service. No matter if there are some good doctors still who want to help they too become part of the system. A system that has strayed far from it's original intent. Until that changes medicine will always be just another business.

It is frightening to think that Johnny was not the first that this happened to. It is even more frightening to know that he will not be the last.

[SDianneB]

Lily, I can relate to the anxiety attacks to a degree -- nothing at all like your Johnny experienced though. While I was hospitalized, the day I had my first PET scan I was supposed to have a brain MRI that same day. I was NPO all night, and was NOT happy about that as I was just getting my appetite back and was hungry all the time! They finally take me for the PET scan, then bring me back to my room where I wait. And wait. And wait some more. They at least let me have lunch, then one of the nurses mid-afternoon thought we were in trouble for that, because I hadn't had the MRI done yet. She called them and was told it was ok for me to eat, and that they were running late and would get me "later."

It was after 6:00 when they came after me -- making me miss supper, drat! (Not fatal, but the substitute was a dry old sandwich, and bread tasted awful to me about that time.) They take me down there, and the technician puts me on that hard, flat table, and starts explaining things to me. Of course, I hear the "jackhammers" in the MRI machine right off, so he gives me ear plugs. My worst problem was that I couldn't lay flat on my back and breathe at the same time -- what a choice, huh. I just simply could NOT do it. (When I had the CT & PET scans, it was no big deal -- they just propped me up a little.) Having the MRI of my brain, I couldn't be propped up at all, so was literally gasping for breath.

Then, he slaps that "mask" on my face, and that was all she wrote. I was over anxious from all the tests and then having to wait to hear the results, was tired that day from tests and waiting and not much food, had one nerve left and he got ON IT! I told him then and there that I wanted OUT of there. I was not about to go into that tube for 45 minutes (his estimate of how long it would take) when I couldn't breathe, and with that thing over my face. Uh uh. NO way, Jose. He wasn't real happy about that, but at that moment I didn't care.

The next morning was bronchoscopy, and my wonderful doctor. I told him what happened and why, and he said it was no big deal -- I didn't have to have an MRI, could have a CT scan, so that's what we did right after the bronchoscopy. No problem at all. (I've since located several open MRI machines here in town, so if he wants one of those, I'll make sure I go to one of them!)

As to seeing the doctor before chemo, I can't answer for everyone, but where I go it is "THE PROCEDURE," and you don't vary from THE PROCEDURE! Of course, if I needed to be examined or something, that would make sense, but that's not happened with me yet. Making a fuss about it helps though - or at least it did me. If nothing else, I'll just go back to the chemo room, lie back in one of the comfy chairs next to someone who needs a little company, and make my self comfy until the doctor deigns to see me.

Dianne

[lilyjohn]

You mentioned a mask and how it made you feel. Johnny was very claustrophobic. At home he used the nebulizer with the pipe not the mask because of that. When he intered the hospital I left him alone for a while one day. He called me and asked me to get up there right away. He said that he had had a major attack and in his words"these people just don't know how to handle it like we do".

You can not imagine how angry I was when I learned the reason for his attack. The respiratory theropist had come to give him a treatment. Johnny could never stand the whole treatment without taking a few breaks. Because it was the mask he needed even more breaks. The therapist got up set with him and held the mask on his face forcing him to finish the whole treatment without a break. That was only one of the cruel things that he went through. Needless to say after that I only left him alone for minutes at a time because I just didn't trust them. I only wish I had remembered that the night before he died. I would have lain on the floor in his room to rest instead of leaving him alone with a bunch of people that did nothing for him but cause him harm.

[SDianneB]

I hear that.

Back in 1971 when my dear grandmother was dying of pneumonia, I remember that a Respiratory Therapist came into her room, and without saying a word, just slapped that mask over her face. She'd been asleep, and it scared the "you know what" out of her, of course. My mother ran him out and made sure that never happened again.

I will never forget lessons learned from my grandmother's hospital stay oh so long ago -- that was only one.

I will say that taking the breathing treatments every day was something I looked forward to very much while in the hospital. It made me feel so much better, and the techs were really wonderful. The mask didn't bother me really.

I don't think it was just the mask that bothered me about the MRI, but the mask on top of everything else. I couldn't breathe, and he was locking me down and expected me to stay that way for 45 minutes -- gasping for each breath and holding still. Gimme a break.

Dianne