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

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...

This morning the doctors decided they would like an MRI of my spine.  I have an implanted nerve stimulator, which usually is compatible with an MRI machine.  Mine is.  On being told of this implant, the radiology department asked for additional information.   They, the doctors, asked me for information about the implant surgery, the where, when, who etc.  I realised what they wanted and attempted to give them the information they needed: information about the device, and the person they needed to speak to.  No, no, they said, we know what we are doing, we need to get certain information to allow the MRI to go ahead ... In the late afternoon the team leader of the doctors came back to me and said that the MRI would have to be deferred until the next day.  It had taken all day to get the information that they needed.  I tried to tell him that all he needed was to ask me for the name of my contact at the device’s supplier, who would be the ...

I saw Lisa at Hurstville Private Hospital following my vist with Trish on 8 December. I was concerned about my current stoma bag leaking and she made some suggestions as to how I could deal with it.  We discussed the merits of softly convex versus flat bags and concluded I would be better off with the flat bag. She gave me suggestions - in particular the Dansac bag the I had used with my previous hernia. I remembered I had some at home and said I would try some. When I arrived home I couldn’t find them (I found them a week later) I went onto the Dansac website  and requested some more, as well as the two piece, which have capacity for a belt. I think I will need to wear a belt for this hernia.  (Samples arrived 15 Dec)

Admission to St Vincent’s Hospital 18 December 2017 . My GP came and saw me as usual in the morning, the day after I had arrived back from my 3 day cruise to nowhere.  During the cruise I had been in a great deal of pain from my spine, spending the night screaming at intervals front he stabbing pain, the grinding of lumbar spine bones as I moved.  The days had not been much better, with pain from the cauda equina syndrome and from sitting too long in my wheelchair. The pain relief had not been adequate and I had doubts as to whether the fentanyl patch was actually working.  50 mcg should make a difference, however most of the time it was not connected to my skin, lifted by sweat and heat.  We had stuck it down with an elastic band debut I was sure it was not making a difference.  I was relying on endone alone. My GP immediately launched into a request for me to go to St Vincent’s to try and access the neurosurgeon Dr Tim Steel.  I had heard of him fr...

Vist to Dr Mankarios Skin Cancer Clinic, 8 December 2017 I visited Dr Mankarios to get a small lesion on nose investigated.  It was small, red, and peeling, scabby and had been there approximately at year. Dr M said it was a warty growth and zapped it with liquid nitrogen.  He went on to zap some of the same on the left side of my back, however I asked him to stop after a few as it was beginning to hurt. He examined my whole body and found nothing of interest. I am to see him in a year’s time.

Visit with Natalie from Medtronics at Hurstville Private Hospital 6 December 2017 Met with Natalie to review progress with device since surgery.  I told her I had spent the time in severe pain and was unable to get down past 6.5 most of the time and spent most of my time on 7 and higher.  She had been critical of this in the past; however I showed her the 6 Dec CT scans showing the fractured vertebrae and she acquiesced to me using a higher voltage, commenting that I would use a lot of power.  I told her I charged twice a day. On William’s prompting (he is impatient; I would have brought it up later) she wrote 2 programs for me to try using a point higher on the leads.  I am to use each for 4 days and text her with my view on the result. On seeing the CT scans, she said that Dr Tim Steel of St Vincent’s Private might help.  He specialises in surgery on the spine and does cages around affected vertebrae.  He may be worth a visit.

Visit to Stoma Nurse Hurstville Private Hospital, 6 December 2017 Saw Trish when I was seeing Natalie from Medtronics.I told her that my problem was that I was leaking because the stoma was not fitting the bag correctly.  My stoma measures approximately 60 x 45.  We discussed various options and she suggested a shaped stoma wrap and showed me one, to be used with a flat bag.  As well, we should consider 2 part bags, as the plate is bigger than 60 mm.   She said she would ask the manufacturers to send me some samples to try and we could meet again.  Time set is 11 December at 11 am.

Monday 11 December 2017 Patrick, 1.Prednisone now back down to 22 mg 2. Oedema in feet fairly stable however have sprung more leaks on right upper foot. 3. Pain.  Really need to discuss pain meds.  Not sure fentanyl is working  - extra had no effect I could not discern and patches keep detaching.  Would like to see dr David Gorman at Calvary Pain Clinic.  He specialises in palliative care.  Re neurosurgeons: Have already seen Drs Erica Jacobson, Bill Clark, Mark Davies.  Have made an appointment to see Dr Tim Steel of St Vincent’s Private on 6 March 18. He specialises in cages.  A long shot, but hey why not?  Pain is BAD.  I canno cope for much longer in this way. Jimali PS. Query vaginal swab results? Still bleeding, now worse.

I went out today to appointments and left a note for Patrick, my GP, saying he needed to look at my pain meds (given the state of my lumbar vertebrae).  I left instructions with the nurse to show him the CT scan. The nurse told me he did look at them.  He has increased my fentanyl patch by 12 mcg, from 25 to 37mcg.  He is very concerned and wants me to see a neurosurgen urgently. The medtronics rep, on seeing the CT scan, had recommended I see Dr Tim Steel of St Vincents.  He specialises in difficult surgery and is known to use a cage to surround the spine.  Sounds interesting. I have made an appointment - not until 6 March, unfortunately. Patrick will speak to me on Monday.  Hope so, as I have an appointment to see the stoma nurse on Monday!!

Monday 27 November 2017 Patrick 1.   Dr appointment this morning. Dr Ho removing staples etc at offices at Newtown 2.   Pain has increased - rather pain has not changed from the period between trial and permanent surgery.  So NS is fixing unbearable pain - however pain levels are high. Something happened in that period to make pain worse? Perhaps another fracture  or shift in old one.  Using high level of voltage on NS and taking endone 4 times daily.  Still 8/10 pain at times.  Hoping it will settle eventually. 3.   Not sleeping well - better than before however. Can you prescribe 2 diazepam for a while? I am sleeping often only 3 hours and I need to catch up. 4.   Lupus flare continues.  Tried to come down but flare worsened so still on 35mg.  Will try again on Wednesday .  Feeling miserable from it. 5.   Saw endocrinologist last Wednesday.  Said I have autonomic neuropathy.  Explains a lot.  Change...

Visit to PoW Dental Hospital 5 Dec 17 Re Extraction of 3 molars which have disintegrated under general anaesthetic. I could have done this over the phone.  The trip into Randwick was completely unnecessary.  The visit turned out to be an interview and completion of paperwork for the surgery.  I took the paperwork with me as I find it difficult to complete this type of paperwork without my records. I have been taking dunosimab six monthly - whilst it does no good; it was supposed to do no harm.  The dentist told me it has the same action as a biphosphonate; it makes the outer bone brittle and increase the chance of necrosis of the jaw.  So I have to wait at least 3 months until the effect has worn off.  The surgery is now to be in April. I will be refusing dunosimab in future.

CT Scan 4 Dec 17 Requested scan because of increased pain in spine since a week prior to the permanent implant of the device. The L3 vertebrae is now sitting on top of L4 - as if it wants to take the space that L4 is occupying.  This has moved L4 so it impinges more into the spinal cord. L2, L3, and L5 appear to be fractured as well.  Shocking.