4: A Case of Lupus - Lahey Clinic Perspective

The Lahey Clinic Experience

Well over the course of the next week Pam found it increasingly more difficult to breathe. After work one night she went to the Emergency Room of the Lahey Clinic annex in Peabody. They did a chest x-ray and determined she had a pleural effusion and had only 25% use of her left lung. The fun was just about to begin. They drained most of the fluid from her lung eventually and she felt immediate relief. However, the doctors at Lahey were insistent that the effusion was a result of her lupus. I know Pam and I know her lupus symptoms very well. I knew good and well this was not a lupus flareup. I kept telling them this, but it was not what they wanted to hear. They said a pleural effusion could be a result of infection, but because her white cell count was not low, it was not that. I proposed that Pam had actually developed the effusion at the Brockton Hospital but the antibiotics they gave her knocked out the infection and the pleural effusion remained. If they had done the chest x-ray as they should have, they would have picked up on the pleural effusion. (And for the record, I believe this was all deliberate. They wanted her back in the hospital later.) The doctors at Lahey eventually conceded that I may be right, only after I told the story to every doctor that walked in the room, but they still insisted the pleural effusion was a result of her lupus!

The doctors at Lahey increased her steroids because of their claim that the pleurisy was a result of a lupus flareup. I expressed concern over the huge doses of steroids to one of her doctors, and he said that she would not need to have her steroids tapered for the brief period her steroids had been increased. This was a relief. The next day Dr. Courville, her primary doctor at the time, agreed Pam could be released after they tapered her steroids. I told him what the other doctor had told me, that her steroids would not have to be tapered, so Dr. Courville said he would release her the following day. We shook hands. So much for a gentleman's handshake...

They took out Pam's IV and I was able to sleep on a cot for the first time in days. I had been sleeping in a chair prior to that. Anyway, at 2:00 AM, Pam woke up with a horrendous headache. She had migraines supposedly from the lupus before but this was different. Her migraines had always been slow to come on, but she woke up with this one already hammering. They pretty much let her suffer. She literally cried for four hours from the pain. The doctors did nothing other than the equivalent of over-the-counter pain relievers. At one point during the wee hours, I went to the bathroom after Pam and she had left the hat, you know... that plastic thing used to measure urine output... where I had to remove it. This was nothing new, but I knew that it had been empty the last time I had been in there. However, in just one visit, Pam had just filled the hat half full with urine. That was a LOT of urine! I told the nurses and the doctors, but everybody ignored me aside from the fact the nurse emptied the hat.

At noon I was sitting on the cot and Pam was resting peacefully. It was good to see her resting because I knew how rough she had had it. I heard a sound come from Pam and I looked her way. Suddenly her legs and arms started flailing, her eyes were staring off, and she was having a grande mal seizure! I screamed! I mean, I SCREAMED! Pam's primary internal medicine doctors, all three who I could not find to save my life, all suddenly appeared from nowhere. Lots of people showed up then, some of them nice people.

They gave Pam Ativan, another hypnotic sedative similar to Versed, after the seizure and she was decidedly out of it. Not long after that they took Pam away for either the MRI or CT Scan and I went into the restroom to find the hat, which had been emptied earlier, completely full this time. I know for a fact that it had been empty half an hour before. At the point that the hat becomes full, the rest would just run over the top into the toilet so there is no way of knowing exactly how much she actually voided in one go. Pam later told me she had gone to the bathroom while I had left the room for a few minutes prior to her seizure. The doctors still ignored me when I told them this. What I learned later is that severe dehydration could bring on a seizure. She was not on IV fluids at the time and she lost a heck of a lot of fluids!!!! (Could it be that she had been given massive doses of diuretics at some point during the night?)

Suddenly the doctor that wanted to keep Pam there (supposedly in order to taper off her steroids) got his wish after all. Except they were not tapering off her steroids... they just increased them exponentially. They increased her steroids from 160 mg to 1000 mg of Solumedrol, which coincidentally is given to patients undergoing the Rituxan treatment. Solumedrol is the IV form of prednisone or steroids.

The doctors, being the kind souls that they were, moved Pam to a room in the Critical Care unit where I was no longer allowed to sleep in her room. As they were moving her and her whole bed, they told Sara and me that they (the doctors?) were going to go get her settled in her new room and that I would be able to join her in five minutes. When did doctors start settling in patients? I should have known something was up. Well, the next thing I know, a nurse is coming to tell me that they are doing a lumbar puncture on Pam in the room and that I would have to wait. I was livid. When Colleen Kelley, one of the doctors, finally came in, she told me lumbar punctures, aka spinal taps, are not nearly as bad as the tv shows make it out to be. She said they numb the area really well. Apparently they failed on their four attempts at the lumbar puncture. I asked the doctor what they got and she said some blood... she said that happens sometimes when they do it in that setting. Colleen Kelley also said they told Pam all about the procedure before they did it. I looked her in the eye and asked if Pam had understood what they told her and she mumbled something, but whatever it was, it was definitely not a 'yes'. I could tell it was not a question that she wanted to hear.

When I finally was able to see Pam, she asked me if I heard her screams from outside. Sara lost it when I told her that. She had heard the doctor say it was not so bad. Dr. Kelley came back in and I looked her in the eye, once again, and told her that Pam asked if I had heard her screams from outside. She did not say anything. So do you think Lahey hell was over? Not by a long shot.

The next day Pam had a fifth lumbar puncture done by a professional and this one was fortunately successful. I was getting angry with the games they were playing in that they deliberately separated Pam from me while Pam was drugged and could hardly make decisions for herself. I spoke with the doctor in charge of Critical Care and said something about the four lumbar punctures and how they used deception to take her away to do the procedures, and he said that they must have had somebody very good available to do the procedures at the time. I replied that if he had been that good, I would hope it would not have taken him four failed attempts to give up. He had the grace to blush.

The following day they performed an angiogram on Pam. They fed a wire through her hip all the way up into her head to supposedly determine what brought on the seizure. Sara was with her up until the time they took her for the test and the nurse told Sara that she could go check in at the 2 OR West waiting room desk and the doctor would come out and tell her how it went. Instead of waiting for what was supposed to last a couple of hours, Sara left as I was returning in the garage so I went straight to the OR desk that the nurse told Sara about. They told me that they did not have anyone by Pam's name. I told the receptionist what Pam was having done and she just reiterated that she did not have anybody by Pam's name. So I went upstairs and buzzed the nurse in Critical Care, but she could not help me. She said that Pam's nurse had gone down to get her. That meant that I had gotten there when the doctor would presumably have come out to speak with me. Right about then I saw one of Pam's doctors. I asked her where Pam was and how they had told me in 2 OR West that they did not have anyone there by Pam's name. She said Pam was just having a 'procedure' done and that notes would have been added to her record, but the doctor would have never come out to talk to me. I bet he wouldn't!!!

They finally brought Pam back to her room. By now Pam was getting upset at the lies they told her. Since I was in listening mode and certainly not wanting to upset her, these were things she noticed on her own. Like they told her something was not going to hurt and instead it hurt like hell. Or they told her they were taking her for one test and then took her for something different instead... usually a test that hurt like hell. After the angiogram, she was told she could develop a blood clot if she moved at all and had to lay perfectly still for four hours on a back that already hurt from five lumbar puncture attempts. My heart broke for Pam and that was when the neurologist Elena Bortan came in. I asked if I could speak with her outside, so we went into the little waiting room. I said, "PLEASE show some compassion for Pam." I asked that they space out the tests so that she does not have to lay perfectly still on a back that has four botched lumbar puncture sites for four hours. I asked that they do the PICC line which would mean a lot less blood draws and IV line insertions. (Omigod, PICC lines are awesome things when you FINALLY convince the doctors to go for it!!!) Pam had no veins, between Brockton Hospital and now the Lahey Clinic, and even the IV nurses felt bad for what they had to do to her to get blood or to insert a new line. Elena seemed sympathetic but it was still early yet.

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