Out Of The Hospital, But Not Of The Woods

I blame myself for not paying more attention when I accompanied Juan and his partner way back when to that first appointment where I said I was really only along for the free lunch... but console myself by remembering that I had specifically said "If there is anything I don't know, tell me now so that I don't have any big surprises" and I was assured that I knew all there was to know? Well, I DIDN'T KNOW that that appointment was in a freaking cancer center. I guess I missed the sign or didn't think to read it- the place looks just like a medical complex where I would go to get my head examined or a mammogram- there was nothing about it that screamed cancer center. In fact I did not know this, nor really what kind of doctor Juan's doctor is, until he was released from the hospital and I came home and started researching him online. Now things were making a little more sense except for that one burning question, "why didn't anyone tell me this before?"

The home health care nurse came both Saturday and Sunday after Juans relaese from the hospital Friday. Juan showed up for his doctor appointment Monday morning. This was the appointment that the hospital had scheduled for him for the follow up and catheter removal. Upon arrival at the doctors office (the same one who had done the surgery) Juan was told that the incision sight looked fine but that the doctor was not going to remove the catheter (In a manner like eewww- I am way over qualified for that!) but his staff would call a urologist and make an appointment.

Juan's doctors staff was unable to reach a urologist and Juan was sent home, again, catheter intact to wait for a phone call for an appointment to have it removed. The call never came.

Juan was also waiting on a call for an appointment for when he was to return to the hospital to have the port put in. That call never came either.

Now I swear that what I am about to say is not something that I am making up- I can't swear on a stack of bibles to it's truth because I was not listening in on the conversation- but after the cluster of events over the past few days I believe this to be true...

Impatient waiting for the phone call about the catheter removal and the port installation, Juan decided to call the hospital. The hospital staff checked and told him that he was scheduled to have the port installed the next day at whatever time and that someone would be up to get him when the time came. What? Up to get him? Juan was confused- he asked "what do you mean up to get me? " the hospital staff asked, "aren't you still in room 467?" Juan says, "NO! I was released last Friday!"

For three days- the hospital still showed Juan to be in his room... am I the only one who thinks this is preposterous? I hope that I get to see the bill to see how much Medicare was charged for the three days after Juan was discharged from Maine General Augusta Hospital...

Maine General Augusta

After Juan's surgery on the 12th, his partner and I went to visit him daily during his stay in the hospital. He spent the the remainder of the 12th all of the 13th and some of the 14th in CCU.

CCU was very nice. All of the nurses were attentive and pleasant and I felt as though Juan was being well taken care of even though he had had minimal contact with his surgeon and had still not been informed of the cancer. I will be the first to admit that I was not there around the clock and Juan's memory was a little hazy- it's also not like the old days when you can pick up a patients chart and see what has been written down- everything is done on a well guarded computer so I can't say with any degree of certainty that the doctor had not told Juan of the cancer, but if he did he not tell him while he was lucid.

It was the 14th when Juan was moved from CCU to a semi private room on the fourth floor and to all of our surprise, the fourth floor is a super secret place that is not even mentioned in the hospital directory. Imagine our shock, and his, when the elevator doors opened to a big sign that said ONCOLOGY. Really? Cause there for while I was thinking that I had been the one with the morphine drip and had hallucinated this whole cancer thing..

The semi private room was so small. There was little room for visitors or staff- it was unbearably sad listening to the man in the other bed and it wasn't just his moaning, it was his conversation with a nurse about how the hospital had misplaced his CPAP machine when he had been moved to this room. Luckily, that was not my problem and Juan seemed to be doing as good as could be expected. He was in intense pain from the invasive surgery, still wasn't clear on what had been done to him and by now his partner and I really could offer him no new news as we had had none.

Due to the confinement in the room and Juan nodding off from the narcotics dripping into his veins we didn't stay too long that visit. We promised to be back the next day, Friday and said our good nights.

The 15th came and we were planning the trip to Augusta (35 miles or so) when Juans partner got a phone call from the hospital saying that the doctor had ordered him released. What? He still had a catheter, they had not put the "port" in (I know nothing about that other than it was something that was supposed to have been done) and only 18 hours or so earlier he was nearly bed ridden with his morphine drip- how could he be ready to be discharged? None the less, we headed to Augusta to pick him up.

For the rest of my life (or at least the average career length of a nurse at Maine General) I have to be very VERY careful never to be in a car accident or anything that will land me in that hospital because I am quite sure that in the nurses lounge there is a dartboard with my picture taped to it by now... but moving on, it was now probably 6PM and I sent Juan's partner in to see him hoping that I could have a chat with the charge nurse. I was very nice ( I was! ) but I told her that I wanted to make it known that I disagreed with the discharge orders. She looked puzzled. I told her, Juan and his partner live out in the sticks - in an emergency it is 45 minutes for an ambulance to get there. His bedroom is upstairs, and you can't even drive to the house- it is a long walk from the driveway. I also told her, his partner is 77 years old, there will be no one else home and I don't know that she is capable of taking care of him. His dressings would need to be changed, his catheter taken care of (didn't ask, don't want to know what that involves) and the nurse just looked at me like I was the biggest bitch she had ever met for questioning his discharge. I tried to explain to her that without the morphine drip he could be a handful and his partner is not always "with it" She said to me, and I quote "We can't change peoples personalities" I told her I understood that but wanted it on record that I objected to his release.

The charge nurse then went to Juan's room and asked him if he was ready to go home and of course he said yes- he had been planning it for the last couple of hours and the man in the bed next to him had just been released so naturally he felt ready to go- the charge nurse then asked his partner if she was capable of taking care of him and she sheepishly, as to not offend or cause controversy said yes, and with that I was escorted to the waiting room while the nurse showed Juan's partner how to take care of him.

About 30 minutes later a social worker shows up at the waiting room. She was very nice but she had obviously been called there to "quell the situation" and I had to start from the beginning again with why I objected to this happening. She did make it clear that it was not my place to make the decision, which I do understand, but I made it clear that NO ONE should make the decision without first checking the facts, such as, is home in an urban or rural location? Do you have an extended walk to get inside? Will there be competent people at home to care for you? Simple questions that to me, should be on a form on the discharge papers and signed off on by the patient and his caregivers- but they aren't.

After some time with the social worker and her really not being able to make a valid argument, she excused her self and came back to tell me that she had spoken to Juan and without mentioning me, recommended that a home health care nurse come by daily and help him, and he agreed, did I? Yes, at minimum, I agree. Thank you! For the first time since the ordeal started I felt like someone actually listened to pathetic insignificant me! With that, the nurses disconnected Juan's IV, gave him an appointment card with a time to see his doctor, in his office , for Monday, for follow up and to have the catheter removed, they then loaded him into a wheelchair and rolled him out to the parking lot said "good-by and good luck". (They may have mumbled something to me but I am pretty sure it was not luck )

Juan's partner drove him home, I went too to make sure he got inside and situated. He asked me if I was staying for the fireworks and a few other really loopy things and then apologized repeatedly for not being in his right mind. I left for my own home 45 miles away, the home heath nurse came Saturday and Sunday and all was well, or as well as could be expected.

Now I have my own opinion about why Juan was released late Friday afternoon, but I would really like to hear what others think... after reading this story and the 2 previous ones about Juan's doctor... does anyone smell anything fishy here?

The bad side of bed side manner

For confidentially reasons some of the names have been changed to protect my ass from getting kicked.

On July 12, someone close to me, I will call him, Juan, was scheduled for surgery, a biopsy to be exact- not the laparoscopic kind, but rather the full blown filet you open and dig around inside your innards kind... this story reflects the events prior to, during, and immediately after that day.

For several years Juan had been complaining of something aching in his chest. He had test after test after test and while I am not privy to knowing the results of each of them, my conclusion was that no one could determine a cause for Juan's pains. Skip ahead to 2 months ago or so, a new doctor and some more tests and again, things I am not privy to knowing, but it concluded in Juan needing to have a biopsy.

I went with Juan and his partner to the office of the surgeon that would be performing the biopsy. I sat in the waiting room for a good 2 hours- I didn't understand what was going on, I really was just there for the free lunch that I had been promised afterwards. You see, prior to that appointment I had specifically asked Juan's partner if there was anything I should be clued in on- I didn't want any big surprises- she assured me there was not.

Juan was quite uptight about the pending surgery and he mentioned the cancer word a few times but again, I had not been officially told that could be the cause of his distress and he had been tested for cancer several times already, so I wasn't taking it too seriously I chalked it up to "worst case scenario" talk. Juan had repeatedly said he was far more worried about the surgery itself than he was about what they may find and I just went blindly (in retrospect) along with that.

I went to the hospital on July 12 with Juan and his partner, his last words to me before the anesthesiologist took him away were to take notes throughout the day on anything the doctor came to tell us which I assured him I would. I then patiently sat in the waiting room, um, waiting, for the surgeon to speak with us. I'd say between arriving at the hospital and then speaking with the surgeon, about 5 hours had passed. Finally, we were called into a conference room with a small table and 2 chairs, the surgeon sat, the others with me stood and listened as the surgeon uttered the words "he came through fine, I found a malignant cancer and two nodules and I don't know what they are" Just like that.

Literally, I could feel the blood draining from my head as I steadied myself on the wall to keep from falling down. I shook as I tried to take the notes I had promised to Juan and I don't know that I could even see the paper I was writing on. I had a meek crackling voice by now and I tried to ask the surgeon a few more questions but he made it clear that he had no intention of lingering to answer things from insignificant me. As he hurried through whatever he said, I interrupted him and asked that he use laymen terms so I could make sense of what I was writing and he snapped that he saw no need for me to write anything down, that his report would be ready in three days. I explained that Juan was depending on us to fill him in as soon as he was awake and the doctor told me in no uncertain terms that he would see him first and he would fill him in.

I don't remember what else I asked Juan's doctor that morning- but I do remember this, practically verbatim: "It is not up to me to fill each family member in on everyone of my patients conditions, if I had to do that I would never get anything else done, that's why it is up to my patient to talk to the friends and family" I had questions about another surgery to remove the cancer, chemotherapy, prognosis- they all went unanswered as the surgeon pushed his way through us to get out the door and on with his day.

Have we all seen the commercial on TV for "The Cancer Treatment Center Of America" where the woman tells of her doctor coming in and saying "Peggy, you have cancer. It was like he was telling me, go to the store, there was no compassion" ? That is exactly how this consultation went, only it was not a TV commercial, it was real life and it left me dizzy.

Our group relocated to another waiting room where we were to remain until Juan was conscious and we could see him. We waited.... we waited... we finally decided to get a drink or a snack or something so we left word at the nurses station of where we would be and when we came back we told them that too. Still we waited- no one else seemed to be taking the news as hard as I was though. I sat there with my head in my hands nearly sobbing while Juan's son threw his empty soda bottle at my head (Juans son is 48!) (years!) and told me to lighten up or something similar.. Finally a nurse came in and said "there you guys are, we have been looking all over for you! Juan is awake and keeps asking for you, we didn't know where you were!" Trust me, with that and the arrogance, ignorance and God complex I had experienced earlier in the day with the surgeon it is a wonder I did not explode right then and there.

We were led down the hall to Juans room where he was very happy to see us. He was groggy and confused and asked what the doctor had said- I did not have the heart to tell him and decided it was not my place, plus he would not remember anyway. Juan's son left, his partner and I stayed a while longer, his doctor... never did show up. The nurse said she did not expect to see the doctor until probably 9PM or so... clearly this was inconsistent with what the doctor had told us back in the consultation room but during the course of the day I had learned that no one, even the ones in my own little group, excelled at communication.

Juan's partner and I finally left without having seen the doctor again. I felt so bad leaving, I didn't want Juan to be alone when his callous and lacking of compassion doctor came in and told him the news. It bothered me to no end but as it turns out it shouldn't have. By the time Juan's doctor arrived he apparently wasn't feeling like talking- he simply told Juan "it will take a few days to get the test results back, I'll check on you tomorrow".

Speaking of tomorrow, that's when I will continue this-

Welcome Back, Me.

I am so disappointed in my lack of diligence in keeping this blog going after doing so very well at first.

I let a touchy subject and some chastising from an anti admirer get to me, so I decided I needed a break- that was 5 months ago and I regret now all of the events that have come and gone without me writing about them.

Don't get me wrong, I am in no way feeling like the world came to an end because I didn't sit in front of the computer typing my thoughts and feelings for a few months- I know that it is not the world that missed me, but I missed me.

True, these words are what I depend on for the future when dementia sets in, or when I just need a trip down memory lane... but they are also my sounding board. They are my way of yelling to whoever wants to listen about things that I am passionate about, they are my way of looking for answers to things that I can't for the life of me figure out- my words are venting, and rambling, and wondering and laughing and remembering and bitching... in fact, they are Hermit Crabbing!

I am hoping to get back into the habit of posting something, anything, every couple of days and believe me- I have a lot stored up to talk about!