Saturday, July 31, 2010

Back to the world

OK, the past few days have been an amazingly eye-opening, and positively frightening experience. I have been in Baptist Hospital from Sunday(?), I was having the worst radiating pain my from my abdomen to my back and they had initially diagnosed me with pancreatitis. I was having the worst radiating pain my from my abdomen to my back and the initial diagnosis was pancreatitis which is according to everyone I’ve talked to is excruciatingly painful. pancreatitis is apparently hard to diagnose and there were lipase tests that weren’t adding up, so the GI doc and Dr. Tian wanted to make sure that it wasn’t something with the cancer or my now lovely steroid induced diabetes which also keeps going up, no matter what type of diet I get here at the hospital.

My daytime nurse hospital experience was no problem. The nurses have for the most part been very positive and supportive. But the night nurse situation is vastly different. The nurse that has caused the main issue’s name is Daphne. From the get go Daphne, I saw that she seemed to have a chip on her shoulder, I ask questions about my pain meds because I want to keep things straight in my mind, but she seemed very irritated that I would even question or double-check her.

I just dealt with it as best I could, trying to remain positive, I was still on the higher dose of MScontin which is a long acting morphine, so my pain was tolerable. And then she told me she had the next night had a night off, and the nurse that evening was Delaine and she was really great, no problem. She answered all my questions and told me whatever she could, and if she didn’t know she found out. The next early morning, Dr. Tian came in with Delaine talked about his plan to ween me of the Dilaudid IV because he wanted me to be able to go home soon, so he was going to switch my meds to oral, and he would get me some Dilaudid pills, or sucker thingies. We were hoping I wouldn’t. but he did say that if the pain got to bad that I needed to make sure to call the Charge nurse or the doc on call at the west clinic and they would get in touch with Dr. Tian and we’d adjust pain meds as I needed them. I was in pain at that point but still very positive.

So that night when I see that Daphne, was back, I tried to make chit chat with her and asked if she’d enjoyed her day off and she was all smiles and said, yes, she got to sleep and she enjoyed it it so much. So since this was the first smile I had seen since meeting her, I had high hopes. Well, I found out quickly I was mislead. As I had dinner that evening with momma, I noticed that my back pain was increasing significantly. so I asked for my regular pain meds, plus I let her know that I was definitely gonna take advantage of any of the breakthrough pain meds I had available to me.

So momma left, and I tried to settle in for the night, got my 9pm meds which included only 1-15 mg (?) MScontin, but I had been being give 3-15mg MScontins at for a total of 45 mgs. I had been taking that for 2 weeks , even at home because that is what Dr. Tian/Dr. Reed had put me on and while I was at Methodist Central. I noticed this pill discrepancy and asked her about it and she said that the doctor had changed my meds and that he what he changed it too, so she couldn’t make any changes. Well in the mean time I noticed that I had ALL the tell tale symptoms of a urinary track/bladder infection, back pain, cloudy urine…blah..blah...blah, so I told her to please let the doctor know, she turned back to me as she reached to door and said, “Well you’ll have to let the doctor know that when he does rounds in the morning, because I can’t diagnose you. Well, I just asked the as my nurse to do her job and relay the message, not diagnose me. So time moves on and the pain was getting really bad. I begged Daphne to please let me speak to a charge nurse if she didn’t feel comfortable calling the doctor on my behalf.
She was not happy I asked about the charge nurse, but she said she’d check. Daphne came back in and told me that earlier in the week she had given me a fast acting morphine, 1-15mg pill, not the same as MScontin which is long-acting, along with a dose of the IV Dilaudid, and Delaine had noticed that and told Daphne that was very dangerous because both those meds together, along with everything else I’m taking, could drop my heart rate to low, and I believe her words were “could do a patient in if their vitals weren’t watched carefully. Well all this was news to me, had I known, I would have complained even earlier! Still, though my pain was up and there was no charge nurse, or change of med orders, and I didn’t know what to do, so I remembered Dr. Tian saying t call the oncologist on call at West clinic. So at 1am I called them, and left a message saying I was over at Baptist east and not getting the help I needed, told them about the urinary symptoms, and lack of pain meds. I was told the Oncologist on call would call me back. Within 5 minutes, Daphne came into my room and asked did I call the West clinic, I told her yes, because Dr. Tian said it was my right as a patient to do that. Apparently, the Oncologist on call was Dr. Cash, whom I met with many times during my stay at Methodist central. She is very caring and compassionate, and she took the time to ask me questions and let me ask her questions when she’d make rounds, so I felt really comfortable with her. Apparently she remembered me. I got my extra pain meds and those got me over until the morning when Dr. Tian made his rounds.

He had heard from Dr. Cash about the medicine issue, and the nurses attitude and he was not pleased at all he said, he would make sure that I would not be put would Daphne again, and told me that I had indeed done the right thing in calling West clinic, although that wasn’t my job, it would have been hers. SO at least I felt a little better about “going over her head”.

So they next morning, Dr. Tian came in during his rounds and the Charge nurse came into the room after she had talked with him to let me know that this type of care was unacceptable, and changes were going to be made. I felt comfortable with this, and told them both that I honestly wasn’t considering a formal complaint at that time.

So the next night I was waiting for my pain meds which I should have gotten at 10pm, the nurse, Lori (I believe that was her first name, but it’ll be in my complaint) said she was coming, but had a couple ahead of me. I said that was fine, but I just didn’t want to get to far behind the pain, so as soon as she could give them to me, that would be great. She left to go get them. I was so weak from the pain that I called the Nurses helper (PCA) to help me to the restroom. She did and she said just pull the call button when you’re done, and I’ll be right back to help you back to bed. OK. I pulled the call button and sat there…for 10 minutes. no nurse or PCA. So I thought, this is ridiculous, I can’t stay in the toilet all night, so I grabbed to rails and pulled myself up, only to loose my balance and luckily catch myself before I fell between the toilet ant bathtub. Well it shocked me so to lose my balance and I pulled the string again, still no one came, it had been at lest 20 minutes since the PCA had walked me to the toilet. I gathered all my strength and pulled myself up, and very carefully grabbed the wall rails and walked myself back to my bed. Also still no nurse, no meds. Pushed the call light on the bed and another PCA came to the door, a guy, I asked him to get my nurse for my pain meds, he said he would tell her to come in. In the hospital they always ask you to rate your pain level, for the last few days I’d been able to say that I was at an 8-10 level, which is BAD, but sitting there in that bed, crying, I can honestly say I was of the chart, I’d say got me at least a 13, and what makes it so bad was that it was so unnecessary, and the extra pain was probably because of frustration.

The nurse finally came in gave me 1-15 MScontin and 1 unit of IV Dilaudid. But the fact that I had to wait for 2 hours from the time I was supposed to receive it is what really bothered me. I basically had to tell this new night nurse that if I needed more meds I was going to call the charge Nurse and West Clinic on my own if she wasn’t willing, because I new my pain level better than she did and that I had called them myself the night before. I somehow think the nurses new what had happened the night before, and perhaps now I have a “reputation” up here as a troublemaker but I guess I’ve ot to be OK with that. I shortly received an additional IV Dilaudid.

That got me thru until morning, when Dr. Tian came back for rounds, and again was not happy with the news of the night before. Again the charge nurse came in as well, and was very apologetic. This time, I told them I was considering a formal complaint, and I believe I need to file one. Maybe it won’t help me but it might help another patient.

Tonight I have had a wonderful night nurse, that has been so nice, and my mom is sleeping up here with me. Gus was worried to be home without one of us, and right now he’s my priority, so my mom and I decided that she would spend nights up here with me and Jamie will stayi at home with Gus. He’ll be coming up here first thing in the am. Momma’s snoozing like a baby. That makes me happy.

On yet another note, Dr. Tian requested an MRI on my lower back pain, and there is a tumor in my muscle to the left of my spine that is where they believe my pain is coming from, it’s not in my spine, but next so he’s gonna see about getting radiation to it, and he said they usually respond well. so we’ll check on that one.

We are also calling a clinic in Little Rock to get into the Ipilimumab (also known as MDX-010 or MDX-101) melanoma trials. I believe they have this trial in Little Rock, Knoxville, and MD Andersen in Houston. I’m happy to be able to focus on this new treatment, and I know that Dr. Tian is as well. We initially chose Little Rock because it is the closest to Memphis, but I keep hearing all these wonderful things about MD Andersen, and I’m thinking that I might have even more options there. I’m gonna check on it. Well now you know why I slipped on the blog for a few days, and I pray it doesn’t happen again, and all has been finally worked out with my pain meds. I’m thinking so because when I woke up at 1:30 am, this morning I can honestly say my pain level is at a 6 with the proper pain meds and this e PCA pump. And I’ve just spent 2 hours writing this all down, without being blurry-eyed. Hopefully my spell-grammar check is working!

Bon Courage!


  1. Oh, Danielle, what a story of a terrible experience. But you're on the other side of it now. Plus has anyone ever told you that you write very well? You've got a genuine talent for describing a scene in a way that your reader gets totally immersed in it to the exclusion of everything else. I knew you had a genius for making purses that hung sideways on walls so that all their little wooden letters inside spilled out, but now I see you're a writer too.

  2. Thanks Julius, that really means a lot to me. I've always had the desire to write, but never really the time to do it, but since I sit here a captive audience, and when I'm not in so much pain, and typing takes much less effort that writing or talking, typing is pretty easy in the scheme of things!

    ...and By the way, Thank you!

    love and light, darlin'!


  3. I am so sorry about your negative experience with the staff. It is a shame that you have to fight for care and attention when you most need it and when you least feel like dealing with that sort of shoddy service and bad behavior. You are a bright and tough lady and I am sure they will get the picture that you're not going to settle for that sort of treatment, as no patient should.

    Your experience brings to mind something I once heard an actor, Evan Handler from Sex and the City, say. He was Dx'd with Leukemia at age 24 and spent 5 years in treatment. He said that there were times he had to be an absolute a*****e with the medical staff in order to ensure he was getting the right meds and treatment, and he thinks that this attitude saved his life at least a few times. Remembering this about him, and also in light of your own experience at the hospital, I googled him and found a book that he wrote about his experience. I have not read it myself, but the Amazon reviews indicate that it might be helpful, informative and encouraging.

    As always, you and your family are in my positive thoughts. Bon Courage, Danielle!

  4. Danielle, I so wish I was there. I'm glad you had the fortitude to see this whole ridiculous situation through, but SO, SO sorry you had to. Sending love and prayers. I'm proud of you, big cuz!

  5. Thinking of you. Lots of love from the UK xxx

  6. Danielle, please let me know if you want to know more about MD Andersen. I have a connection there. Thinking positive thoughts and sending good vibes your way----best, sam and brian