A Medical Diary: Coping with Lupus and Ehlers-Danlos Syndrome

Wrote to GP this morning asking for 20mg more oxycontin on the basis that I wanted to replace the fentanyl patch that would not work.  I have been living form one 3 hour point to the next waiting for next endone dose.  Currently 40mg oxycontin and 15mg endone 3 hourly.  Previous to that 40mg oxycontin 50mcg fentanyl and 10mg endone 4 hourly, but the fentanyl didn’t work.  I converted the fentanyl amount o oxycontin and asked GP for enough to bring me equal to the amount he was giving  me previously. It worked, so I am from now taking 60 mg oxycontin and 15mg endone 3 hourly.  

Patrick came to see me.  I was not expecting him as it is New Year’s Day and I had not written a note.  He asked about the hospital visit, the pain meds and how I was going generally.  He looked at my legs/feet and commented on the swelling.  I asked him to chart an order for diazepam as the earlier one, written in November, had been lost asn I could not access the tablets sitting in the treatment room.    I noted my prednisone was sitting at 21 mg..

Progress report 2nd admission to St Vincent’s Hospital Sunday 24 December 2017 Sunday Returned to hospital after enduring two nights of unbearable pain at home.  The pain meds - 3  x 5mg endone 3 hourly - were not doing  much by themselves.  There was not much relief and I spent most of my time lying on the bed.  It had become harder to sit; the bones in the lumbar spine feel as if they are grinding on each other.  The RN at home called the Flying Squad and my GP for advice. I was  to go back to St Vincent’s.  The ambulance gave me morphine during the trip which made it easier.  It took a long time to be admitted because of Christmas. I saw the neurosurgical team registrar under whom I was admitted.  She outlined the situation around Christmas - no doctors etc.  Oxycontin 40mg was added back at approximately 10pm which helped quite a lot. I was taken to the ward at 3 am.  I did not sleep at all that night. Monday I cal...

Progress Report Friday Visited by Pain Specialist Drew who spoke to me on Thursday, and a Dr Sun.  They proposed using the 3 endone as a base. I told them the fentanyl wasn’t working so they could get rid of it.  Also the oxycontin had a question mark over it since I developed malabsorption problems.  We decided that could go as well, in exchange for having 3 endone every 3 hours.  This meeting took place in the hall way.  At one point they ask if I wanted to go home and I told them I was miserable - it was the worst hospital stay I had ever experienced. The nurse must have been behind me as from then on she was very nice to me.  At that point - about 9am I had not washed at all. About 10:30 Mihir from Steel’s team came and told me officially that the surgery was postponed and I could go home if I wanted to.  I said yes and he said he would arrange it. The Aboriginal Liaison Officer came to see me and we chatted for a while I finally left at 2...

Progress Report 21 December 2017 Wednesday A day of intense inactivity.  I saw a gynaecologist who examined me regarding the vaginal bleeding.  He said he felt polyps but nothing else.  He wants to do an ultrasound and look for a possible fistula.  A nurse came by later with a swab kit and a urine collection jar. I saw Mihir, the dr from Steel’s team who explained that he was still trying to get the MRI done, but it was the MRI people holding it up - they didn’t like the nerve stimulator. I was promised a visit from the pain team but they didn’t arrive. It was explained they were contacting my other drs. I was promised a visit from the anaesthetic team but they didn’t arrive. I forgot to say that I saw an occupational therapist on Tuesday who discussed how I would get around when I went home.  I told her I lived in a nursing home and I would have all the help I needed. I was moved from my single room just before dinner to a shared 4 bed ward with three ...

Progress to date 19 December 2017 Monday.  Admitted as private patient under Dr Steel.  Did CT scan.  MRI scan planned.  Currently in Public hospital neurology ward 7 north Room 7 Tuesday.  MRI still planned but delayed while doctors and radiology try to work out what to do about implanted nerve stimulator.  This took all day and MRI now scheduled for today Wednesday.  If they had asked me, I could have told them what to do and it would have taken only an hour.  But they refused to even let me speak..... But he had to admit late in afternoon they should have! Pain team is supposed to see me but doesn’t arrive.  Endone has been doubled.  Fentanyl patch still not sticking but they keep trying (do these nurses have shares in the company?). Pain a bit better but still not good - now 8-9/10 instead of 10/10+ Dr Steel  came in late afternoon with team.  Exuberant loud cheerful energetic man.  Lovely.  Frank a...