Does what it says on the tin! Notes to self. A diary, if you will, recounting and recalling my life thus far, with and without MND.
Tuesday, 13 April 2010
Medical MusingTuesday, April 13, 2010
Names and places have been changed to protect the innocent, the guilty and the terminally fussy
Please don't have a go, if you don't like your pseudonym.
No radiologists between here and Rowlingden from 1 o’clock Friday until Tuesday, by which time, I am no longer an emergency. The latest plan is to send me, as an outpatient, to my local hospital on Wednesday at 2.30. I have no idea how I will get there; Patient Transport, have no ambulances available. The radiologists will remove my mangy tube and check out the damage. If the hole, by some fluke, has remained open, they will replace it. This is not likely. A more probable outcome is that I shall be required as an inpatient, on the following week, for a fresh rig placement.
Oh, the ignorance, arrogance and arrant pomposity of doctors: how up my own arse am I?
I need a switch-button to activate a screaming banshee, “IT’S NOT A PEG: IT’S A RIG”.
MND Connect Only work Monday to Friday
MNDA Regional Care Development Adviser Phone switched off / out of range
MND Specialist Nurse Answer phone: out of office until Tuesday. Message left
Consultant’s Secretary Answer phone: out of office. Message left
GP Emergency Service only
District Nursing Service Nurse attended.
I got home on Sunday (11/04/10) and Millie became increasingly incensed by my story. She tried to arrange some treatment for me, for the next day. Determined, she tried everyone we could think of.
The nurse did not know what a rig was. I described it. I told the tell, (“Finding the trick of what's been and lost ain't no easy ride but that's our trek, we gotta' travel it.”) She was not comfortable to remove the dressing. I explained my main concern; that the tube strapped tight to my hot, sweaty belly, was still full of three-day old feed. A breeding ground for all kinds of chaos. She promised to refer me to the doctor, in the morning. She checked that I was able to take fluids and essential medication, before she left.
On Monday, by 9.30, only Millie had called. Pam says, “She were rippin’“(angered).
Approximate Times Notes
12.40 Friday 09 April 2010, I snagged my feeding tube, whilst toileting. When my brother-in-law, Thomas, moved me, my rig pulled. On further inspection, the stoma was bleeding and seeping a milky fluid. (Feed?) The rig tube had pulled out, to beyond the pigtail, which had become straight and clearly visible. I advised my brother, Dave, that I had an hour, in which to secure the integrity of the stoma, before my stomach started to heal.
12.45 Dave phoned NHS Direct. A nurse gave us details of 2 nearby hospitals, Queen’s Hospital Banter and Rowlingden General Hospital. Dave phoned Banter, who informed him that they had no radiology department and advised us to go to Rowlingden, who did. Dave phoned Rowlingden General Hospital, gave all my registration, front-page information, explained the situation in detail, including the 1-hour window and was assured that we were expected.
12.50 Marla loaded Roisin, with me, into the Doblo. Roisin is so cute, better than a voltarol. Marla was a woman with a mission. It was good to see. It was very cool that B was with Flo and Sye. All I could think was that this was some conspiracy, of cosmic proportions, to make me ruin mum’s birthday. Conspiralooning comforts me.
13.10 Marla, Roisin, Thomas, Dave and I, arrived at Rowlingden General Hospital, where the receptionist was ‘unable to understand’ me but took my registration details from Dave. Ignoring my, by now frantic request for expediency, she showed us to a waiting area.
A man in a cubicle was having a loud telephone conversation;
“(In a broad West Midlands accent.)
So he said, ‘I’ll stab you’.
So I said, ‘if you stab me, I’ll stab you back... in the heart’
And then he stabbed me”.
13.20 A student nurse took us to a cubicle called the ‘Pit-Stop’. I again, explained the 1-hour window; she again, took my registration details. She repeatedly wrote and referred to my ‘peg’; I repeatedly corrected and explained what a rig is, emphasising the need to contact radiology. She offered me a paracetamol and went for a doctor, shouting across the ward, to someone, that I have, ‘Multi-Neurone Disorder’.
A computer monitor, in the ‘Pit-Stop’ showed the name and age of everyone in triage, along with their presenting symptoms. One fella came in with a foreign body inserted in his anus.
14.00 The student nurse returned to the ‘Pit-Stop’ to advise us that it was staff handover time and someone would be with us soon.
15.20 Dr W introduced herself and took another full medical history. Dr W asked if I had tried to push the tube back in. I asked her if she understood the difference between a peg and a rig. She said, “I’m very good at saving people’s lives, I do not know the name of every individual piece of equipment”. I explained that she could not push the rig tube back in. I described the pigtail.
15.30 A nurse arrived to take blood and insert a cannula she again took a medical history. I told her that I needed to change my continence pad. She said that she would arrange a hoist.
15.45 A nurse took me to the Medical Assessment Unit and asked me to wait.
A man rushed through to the cubicle opposite with an axe in his head.
16.00 A nurse brought a hoist but the battery was flat, the spare battery was also flat. Another nurse brought a second hoist and 4 nurses proceeded to change my pad.
16.30 Dr W made several phone calls and spoke to a colleague at Rowlingden, who made an appointment for an emergency peg insertion. I refused this procedure and he cancelled it. The two doctors tried to re-insert the tube. Again, I explained that I have a rig not a peg and it cannot be re- inserted in this way. Dr W told me that both my local hospital and Rowlingden had closed their radiology departments for the weekend. Dr W apologised for an unsatisfactory outcome.
17.10 A nurse cleansed the area and placed a dressing over the rig tube and stoma.
17.40 I was released and advised to contact my local Hospital on Monday 12 April 2010
18.00 Mum’s birthday tea: made it.
Approximate Times Notes
9.30 Monday 12 April 2010, Pam phoned my GP practice at Waterfoot Health Centre. The receptionist assured her that one of the GP’s would contact me shortly.
10.00 Elaine Donnelly, District Nurse phoned to find out how I was and to assure me that she herself had contacted the GP practice leaving a message for my GP with the receptionist. She then asked me to run through the series of events from Friday. I again emphasised my concern regarding the liquid remaining in the feeding tube strapped to my abdomen close to an open wound to my stomach.
10.15 Faith Cox, MND Specialist Nurse phoned and asked me to run through the series of events from Friday. Faith arranged to phone back after she had spoken to Elaine in radiology at My local Hospital.
10.30 GP phoned and asked me to run through the series of events from Friday. I asked him if the District Nurse had already given him details. He was afraid not. He arranged to phone back after he had contacted the hospital.
12.00 GP phoned to say that he had made an appointment for Wednesday morning with the endoscopy unit. I explained that I do not have a peg but a rig. He told me that the endoscopy unit at Riverden would insert a rig for me. I severely doubted this and asked him to contact Faith Cox. He asked if he could call round to my house after his morning appointments. I agreed.
15.20 GP visited my home. He repeatedly referred to my peg and the endoscopy department at Riverden and wrote a letter of referral to Riverden for an emergency admission. He said that he thought it best to leave the dressing intact and not look at the tube. I gave him Faith Cox’ contact number and asked him to contact her before booking an ambulance.
14.00 Faith Cox, MND Specialist Nurse phoned with an appointment at my local Hospital for Wednesday 14th April 2010 at 3pm. She advised me that a bed is booked on C1 from lunchtime on, should I need it. I may choose to go straight to radiology leaving myself plenty of time to book in and transfer to a trolley. Faith tabled the possibilities: The radiologists will assess and remove the rig. If viable, they will replace it at that appointment; if not, I will attend the following week, and complete the rig pathway as an inpatient. I described the doctor’s visit and asked Faith to contact my GP.
15.40 GP phoned. Subsequent to a phone call from Faith Cox, he no longer felt it necessary to admit me to Riverden and was happy for me to keep the appointment at my local Hospital.
Approximate Times Notes
9.30 Tuesday 13 April 2010, Royal Riverden Hospital Endoscopy Department phoned to arrange my appointment to insert a peg. I assured them that the appointment had been made in error and was not needed. They agreed to contact my GP.
 I refer you to my earlier missive ‘RIG’.
 Helen Buday as Savannah Nix: Mad Max Beyond Thunderdome, 1985
She is also in ‘Dingo’ with Colin Friel and Miles Davis. You have to love that film for the popcorn and the sweet jazz-blues.
Does that make up for me quoting a film with Tina-simply-shut-up-please-Turner, in it?
 Name, address, local address, date of birth, contact telephone number, next of kin details, GP’s name and address, consultant’s name, care centre hospital address, specialist nurse contact details, current medication, underlying condition, recent medical history.
Granny Made Me an Anarchist
By Stuart Christie