Your guts fall out between your legs
Exerpts from our Family Diary:
- SK has been going to St George Public Hosppital (9350 1111) about her uterine prolapse problem (cervix of uterus was protruding some 2 cm out of the vagina) since she was about 7 months pregnant with Tara (now 3) who was born New Years Eve, 31 Dec '02.
Have mainly been seeing Dr Danny Chou, Gynaecologist, Gynaecological Clinic, Womens Health Section (9350 2315) Was put on a waiting list for surgery.
A few weeks prior to the surgery Dr Chou said that it would not be necessary to remove the uterus, in this case - that's how serious these kinds of operations are.
Post surgery complications played out like this:
- April 4 '05 (Mon) - started annual leave -- worked for Australia Post - Potts Point Post Office, for about 11 years. Pretty much all day on feet behind counter - a lot of lifting. Crucially, was not allowed available sitdown time in the back office when heavily pregnant.
- April 7 (Thu) - finally received phone calll to come to St George pre-admissions checking next day.
- April 8 (Fri) - Go through pre-addmissionss procedure. Accepted for surgery following Monday. Very little information given about preparation for surgery and what will happen - no photocopies, nothing.
- April 9 (Sat) - Peter (partner) phones St George Hospital Gynae Ward to check location. During that conversation Peter asks about preparation. Nurse finds file, asks back "Do we know if it will be laproscopic surgery or not - it's not clear from SK's hospital file?". We don't know for sure, but laproscopic surgery was the impression we got from Dr Chou. Nurse tells us to come down and get special medication to void bowels night before (Sun.). Not told any of this on Friday - if Peter had not called, would have rolled up Monday morning and surgery would have been delayed (or postponed).
- April 11 (Mon) - admitted to St George Pubblic Hospital, 1 South Gynaecological Ward (9350 2667) for surgery. Arrived at 7:00am. Long delay supposed to be going in 5th around 10:00am.
Finally at around 2:00pm two interns came and started asking some questions - one alarming question was "What do you want done?" - like there was nothing in the file!
Then wheeled around to get the anaesthetic. Where the surgeon, Dr Jason Sly, asked an even more alarming question, "Are we taking your uterus out or not?"
Not being laproscopic surgery, it seems to get at her pelvic floor organs they get a scalpel and slice open her crotch - along her perineum - from the vagina to the anus. That seems to be where most of the pain comes from later.
We were also of the impression that Dr Chou was going to be around for the surgery, especially if she had been done in the morning as scheduled.
- April 12 (Tue) - day after surgery. Dr Slyy came round, said the uterus was hanging low and that in the future would have to be raised (thought that was what operation was for!) or taken out. (Apparently soon after Sly transferred to Wollongong Hospital - never saw him again).
Now the problems start. They take out the IDC (indwelling catheter through uretha, that drains the bladder). Sumitra tries to pee, but can't - urine retention. Nobody seems to know what could be causing the problem - no specific information given.
- April 14 (Thu) - sent home, with catheter.. Given Medical Certificate for 6 weeks. Told to return following Wednesday (20th) for removal of catheter and try again. Spent several very painful days at home in bed.
- April 16 (Sat) - experiencing so much painn at home had to be taken to local doctor. Dr B.C. "Eddie" Ong (Kogarah 9588 2719) - put SK on Ural (urine alkaliser - reduce acidity. Why didn't hospital send her home with that?!).
Pain continued. Catheter started leaking - emergency trip back to hospital. Catheter fixed, sent home again.
Note: Seems only urine test in hospital was done at this time - appeared to be only a dipstick test - i.e. no mention of a urine culture. Supposedly dipstick test was clear. But was sent home with a hospital prescription for Keflex (Cephalexin 250mg 20 pack - one capsule 4 times daily - enough for 5 days till April 21).
- April 20 (Wed) - admitted back into hospittal (as scheduled). Catheter removed - SK passed some urine by herself but residuals (left in bladder) unacceptable.
Our major concern at this point was not getting to talk to any doctors / experts about the problem. Peter (partner) ended up cornering a resident doctor up at the Gynae Ward counter - asked if we could have Dr Chou stop by - she started to phone him when another nurse butted in and got rid of us - said they were to busy now - treating the doctor like an intern.
- April 21 (Thu) - Dr Erin Martin prescribedd another box of Cephalexin, 250mg 20 pack.
Didn't seem to be helping dysuria so SK asked should she keep taking them - Dr Will Kutessa said to keep taking them, but Dr Alex ? (f. later conferred with Dr Chou about SPC) said if you have already completed one course you can stop. (Note: much later, through Peter's research got idea to request a urine culture outside hospital - Pathology Report of 11 May showed the bacteria was resistant to Cephalexin)
Suddenly saw Dr Chou fly past, Peter grabbed him at the Gynae Ward main desk and asked about using Suprapubic catheter (SPC, see below) to give more flexibility i.e. the ability to try to pass urine self - he didn't think it a good idea. (Note he didn't tell us there was a 3rd option - CISC - see below.) Christine Johns, Adminstrator Nurse, suddenly appeared during this brief encounter - didn't seem to like that we had gotten to Dr Chou direct. She outright lied and told Chou that SK had been seen earlier by a doctor about the problem.
- April 22 (Fri) - sent home again with cathheter. Told to return Tuesday 26th.
Note: The Discharge Report signed by Dr Martin (642) states:
"To return on 26/4 for TOV
- if residuals (x2) < 100 - 200 mls then d/c
- if fails then SPC"
Was also prescribed Diclofenac (Diclohexal cf. someone said Voltaren?) - 50mg 1 tab - 3 times daily - to reduce any inflammation (in addition to constant Panadol for first few weeks).
Note: Later we found in SK's file that at this time Dr Kuteesa was thinking of the SPC (indwelling suprapubic throught tummy into bladder) option and by 3 May he adds a 3rd option, viz., CISC (Clean Intermittent Self Cathetizaiton - patient sticks disposable catheter in urethra evertime they want to pee - great if you get taught properly, and get good at it, otherwise can easily damage urethra).
- April 26 (Tue) - admitted back into hospittal. Catheter removed - passed some urine but residuals still unacceptable. Sent home again with catheter (still IDC).
Basically informed that there was nothing more that could be done in Gynea Ward, would now be handed over to the Bladder Unit.
Didn't hear anymore about getting the suprapubic catheter, mentioned in Dr Martin's 22 April Discharge Report.
Apparently the idea was to pass SK over to the Bladder Unit to learn self-cathetization / CISC (the 3rd option). But that was not made clear to us.
NB: This is a key point. 'Self-cathing', should be taught in the ward, when the patient has gained enough confidence, then send them home. That's the procedure at a lot of well-run hospitals, e.g. even Cairns Hospital. In the long run that saves everyone a lot of trouble - apprehension and further self-inflicted damage for the patient (to the urethra, infection from improper cleaning regime, leakage), and not wasting the hospital's time with return visits. This is a critical point, because if done properly, CISC would have been the best option, i.e.better than indwelling catheters - IDC and SPC. The reason being the patient can keep trying to pee by themselves, if no good, release the residual with the disposable catheter. You haven't got anything "indwelling" - which have less flexibility, muscles get lazy from non use, leakage problems, and more prone to infection.
Note also, later Peter found in SK's file that at this time Dr Trent Miller was thinking of the CISC option.
On the contrary, Peter went away under the impression that SK was being handed over to a bladder specialist who would try to figure out what the problem was i.e. special testing, etc.
Put another way, Peter thought the reason no doctors in Gynae Ward came to talk to us and explain about causes of urine retention and possible treatment programs, was that the St George Hospital system is that would be explained in the Pelvic Floor / Bladder Unit, by specialists down there - maybe photocopies and references to further reading...
(Sent preliminary sick leave form to work / AP.)
- April 27 (Wed) - had not heard anything frrom Bladder Unit - couldn't phone and locate them through main hospital switch (transferred all round the hospital) so went down personally to push for appointment - they didn't known anything about SK coming in, but finally got appointment for next day.
- April 28 (Thu) - From now on, expected to be in the hands of St George Hospital Bladder / Pelvic Floor Unit (9350 3278) - Department of Urogynaecology (we would later find out that it is run by the Associate Professor Kate Moore, one of the top Urogynaecologists in Australia, thus very busy with research, travel and her private practice - thus very hard to see - this is typical of the Public Health System - operating with part-time medicos).
As it turned out only saw nurse - Jeanette Werda CNC (Clinical Nurse Consultant) Urology - who was only going to teach SK how to do self-cathetization. But even she had trouble trying to find the uretha. (Though Gynae Ward nurses didn't seem to have a problem - as mentioned, big shame St George Hospital procedure isn't to teach CISC before discharge from ward where you can build confidence).
Now here is a critical moment: rather than check with her boss, Prof Kate Moore - supposedly the No. 1 urology expert in St George Hospital, about what to do next, she flicks the problem back to Dr Chou, a gynaecologist. So she gives up and phones Dr Danny Chou about to what to do next. He offered to make a slot for SK in his coming Monday (the day he lends his time) appointments.
- April 30 (Sat) - catheter started leaking again. Went down to Gynae Ward - they let SK in (rather than sending her to Casualty, which is what they usually do). They fixed catheter and sent SK home.
- May 2 (Mon) - Saw Dr Chou. He decided to ssend SK back to Gynae Ward and see what happens when catheter (IDC) taken out. His strategy then was to come back every week for a while, take catheter out and try to pass urine with acceptable residual. At no point did he mention CISC option.
(In view of all the complications to date, he also gave SK a new medical certificate - unable to return to work till June 16.)
Back up to Gynae ward: was passing 100 - 200ml, residuals were 220, 180, 179 ml and by the afternoon had hopes up, maybe finally nighmare was over... but then brought up a 270 residual! Immediately SK fell into deep depression and panic - then bladder seemed to locked up. Catheter put back in.
Dr Chou conferred with Dr Alex ?, late that afternoon, now he seemed to change strategy completely from the morning and wanted to go with SPC.
(Note: the SPC had been recommended by 26 April, if still having problems, by Dr Martin in 22 April Discharge Report)
- May 3 (Tues) - in morning still indecisionn about SPC
Note: Later we found in SK's file that at this time Dr Kuteesa was still thinking of the CISC option.
Saw nurse Jeanette Werda again down at Bladder Unit, about her views on SPC (again she should have sent SK's file up to Prof Moore) - Werda recommended:
"I/O SPC & TOV in 2/12 [2 months] and 1st change SPC in 6/52 [6 weeks]"
[Which didn't seem to make sense to a layperson - that would be a TOV (? Trial of Void) 2 weeks after SPC change on 14 June - did she mean you can get an accurate reading of the situation by switching off the SPC...]
9:00 pm, May 3 - SK fitted with Suprapubic Catheter by Dr Trent Miller. Suddely a medical team rolls into your room, they give you a local anaesthetic, then dig a hole through your tummy directly into your bladder.
By this point no one had any specific ideas on isolating what was causing the retention and voiding dysfunction. Through whole experience no talk of any urodynamic tests or bladder spasms or need for an anti-spasm drug like Oxybutynin (even when IDC leaked earlier and later after getting SPC) or urine culture to check antibiotic resistance.
So everyone, including Nurse Werda, recommended change to an SPC.
The consensus seemed to be that this kind of retention sometimes happens - that it will just take time for the body to right itself - anywhere from 2 to 6 months ...if SK is lucky...
- May 4 (Wed) - Appointments set up to have the SPC changed on June 14, and Dr Chou not interested in seeing SK till June 27. Sent home again (by Dr Will Kutessa, British accent).
SK was not given clear instructions on using SPC (cf. CISC later - given photocopies; and Karantanis later, June 3, mentions clamping off at night, not letting free drainage - supposedly refering to pretending you don't have that facility - not letting bladder muscles get lazy. And as for our experience with having an IDC for more than a few days, not told about spasm problem and need for Oxybutinin / Ditropan.)
- May 9 (Mon) - From her Peter's research att library and using Internet decided we needed to get a urine culture to see if resistant to antibiotic used for infection - Keflex (Cephalexin) i.e. was it working because dysuria continues. Originally given Keflex 5 days after operation on 16 April. Completed course of 5 days. Was give a second course, but one doctor said not to take them. So went an additonal 3 weeks without antibiotics.
Continue to take Ural and cranberry capsules / juice.
Went to see Dr Ong (small GP practice) to get urine culture going. (And referral to another gynaecologist, Dr Gregory Cario - Hurstville, but later more research by Peter indicated better finding a Urologist).
- May 10 (Tues) - Ended up going to Kogarahh Town Medical Centre (9588 4433) - for urine test / culture - through their Dr Saadia Moryosef.
- May 12 (Thu) - Return to Dr Moryosef for rresults. "Abnormal Result" - resistant to Cephalexin.
So maybe culture was not done at hospital after operation i.e. the bacteria in question was resistant to Cephalexin all along.
From Peter's research, it raises the serious question of the difference it would have made if given an effective antibiotic in the first place.
Some experts indicate that infection can cause bladder muscles to involuntarily lock up - leading to retention - if such is the case - perhaps there was no need for SK, and her family, to go through the nightmare, if the infection had been monitored / treated properly after the operation in those first few days.
All these hotshot career medicos, at a loss as to what could be the problem, no-one bothers to start with the basics - Step 1 - the efficacy of the standard antibiotic, Cephalexin / Keflex - has a bloody culture been done (Peter couldn't find any evidence in the Hospital file) - or at least, as St George Hospital System Guidelines (if there are effective ones in existence). that says 'if stuck, pass the case by the top authority in the hospital, viz., Prof Moore. (And once Peter got a hold of a copy of SK's Hospital File, one starts to understand how such stuff ups, dare we say 'malpractice', occur - it's not just the basics of 'systems analysis' - it's the basics of large organization filing. St George has a rough chronological order, broken down by admittances. Fundamentally you need to have a copy of really important reports in a top section - designated and side-tagged: "Bloody Important Reports" e.g. Cultures!
Anyway, Dr Moryosef didn't like our questions, told us to go back to surgeon if any queries. (We heard earlier that Dr Sly had been transferred to Wollongong Hospital!)
Had to suggest to Dr Moryosef to refer us to a Urologist - he picked Dr Loreema Johnson from a list - on attempting to make appointment phone number turned out to be sex shop that complained about getting Dr Johnson calls - checks of phone book and various directories revealed nothing on Dr Johnson!
Dr Moryosef / pathology report recommended trying Noroxin (Norfloxacin). Moryosef wrote script for 3 day course of Noroxin (2 x 400mg tabs daily = 6 in box) Thursday 12 May to Saturday 14 May
Moryosef didn't say anything about coming back or followup test.
- May 13 (Fri) - Tried another doctor to gett a referral to a specialist - Dr Sue Sidhom (Carlton) - she suggested a referral to A/Prof Moore the hard-to-see head of St George Bladder / Pelvic Floor Unit.
- May 15 - Peter's private research on Interrnet shows Noroxin usually 3-10 days for "uncomplicated" infection, 10-21 days for "complicated" infection.
And should do followup test to make sure infection has cleared up.
If not, they should start doing other tests like nuclear scans, IVP (Intravaneous Pyelogram - special x-ray of kidneys, ureters and bladder), Ultrasound, Cystoscopy, etc.
- May 16 (Mon) - made appointment to see Proof Kate Moore (head of St George Public Urogynaecology) at her private practice [Gynaecologist Obstetrician Urologist
1st Fl Pitney Clinical Sciences Bldg Short St (around from Gray St main entrance Kogarah 9350 2054) - secretary said that would be faster than trying to see her public - appointment made for 19 July (4:15pm) - said to bring all records, (but secretary asked for SK's St George Public MRN).
[Sending to AP updated sick leave form (Chou's certificate - unfit for work till 16 June)]
- May 18 (Wed) - decided to see Dr Evette Miikhail (Kogarah Town Medical Centre) - to get a followup urine test. (She was much better than bloody Moryosef, but is a part-timer, is rarely there.) And got a referral to a Urologist - Dr Peter Aslan (a urologist in the same practice, Peter mentioned having seen his name somewhere, she said was hopeless). Appointment made for May 30, then talked receptionist into even earlier, to May 26.
Lodged request for copy of patient file from St George Hospital ($30, takes about 3 weeks - so due for pickup around June 8) - especially as Prof Moore's secretary said to bring copy of records (which could easily be accessed in her public role - and in fact when we finally did see her 2 months later she had it sitting on her desk).
Dropped into (beats making appointments!) Bladder Unit because urine bag was broken / leakage problems. Managed to see Nurse Jeanette Werda for a few minutes. She thought SK was probably back at work by now!
Noowww Werda tells SK for first time that she should be changing bag every week, gives her 3 spare bags and how to order more (from Paraquad)
- May 20 (Fri) - got results of followup tesst. Supposedly no infection, but traces of blood in urine. On telling her of continued pains, Dr Surekha Desai (f.) - Kogarah Town Medical Centre - (Dr Mikhail was only there Tuesday and Wednesday) prescribed Macrodantin, (a brand-name for Nitrofurantoin, the generic) even though on checking the first Pathology Report (May 11 - see here) later (which Dr Desai had on her computer) shows this drug to be useless, and cost us $18!
So here's a doctor that doesn't bother to check the patient's records to ensure she prescribes an antibiotic that works. That wasn't the first time we experienced malpractice with Dr Desai. She's also an alarmist. During SK's pregnancy we had the misfortune to get her. Dr Desai very quickly informed us not to ask questions, otherwise we would waste her time, and presumably revenue generation time. She looked at a report, then told us SK had diabetes and thus would have an early death. Not to mention implications for our unborn baby. In a panic we went off and had tests done. Results - Normal. Needless to say we stay clear of her, and have run into other people in the area who have had a similar experience. (It's a small world, word-of-mouth gets around the village - these doctors should think about that.)
- May 23 (Mon) - We rolled SK up for the Rennal Tract Ultrasound (at Dr Glenn & Partners)
- May 24 (Tues) - back to Dr Mikhail with uultrasound report which was clear.
But she then said Pathology ended up issuing another report showing there may still be an infection. She prescribed a 7-day course of Triprim (Trimethoprim).
Noted on reading copy of report for first time that it recommends another urine test to clarify results. Mikhail didn't seem to be concerned by that - seemed happy to leave everything for looming Dr Aslan appointment
Peter gets the feeling from researcg that the 3-day course of Noroxin prescribed by Dr Moryosef was definitely not long enough.
(Mikhail was surprised to note on ultrasound report that SK had an suprapubic catheter, though this was made clear to her at first appointment.)
- May 25 (Wed) - Peter went to Dr Aslan's offfice and got receptionist to bring appointment forward to May 26.
- May 26 (Thu) - Peter prepared a detailed rreport to make things easier to follow for Dr Aslan. But all this does is cut the usual first meeting from 20 to 5 minutes for $150!. He was abruptly against SPCs - only explanation given being something about colonization on the plastic (though we learned later this does not necessarily lead to infection). Recommended taking SPC out and putting SK on an Intermittent Catheter (CISC). Even if he was right - he expected us to completely drop what the public hospital doctor's strategy - in other words they were just totally wrong - obviously we were thinking, if that's the case why do they sell, let alone use SPCs anywhere - clearly from the Internet many people used them, not just quadraplegics...
Anyway, Dr Aslan just handed SK over to his Nurse Karen Keene to learn self-cath. She couldn't find the uretha either. Had to call Dr Aslan in to do it. Then sent home to try to do it self - Karen was supposed to call Tuesday 31 May, but didn't. When we were walking out even the reception was surprised we had no followup appointment - and that, or a treatment program is what you expect in this situation, to make you feel you are not just going back out in the cold.
Aslan left us totally bewildered. After 6 weeks of the Public Health system merry-go-round, we really expected him to allay all our concerns and set up a clear program for recovery - if for no other reason than you are paying through the nose for it! After the 5 minutes in his office said nothing about the likely program.
The private health system was no better than the public.
(Much later - 7 June - we were surprised to walk into Dr Mikhail's - the referral doctor's office, and the first thing she says is that she received a letter from Dr Aslan to say SK was being trained in self-cath.! In fact we would never recommend Dr Aslan to anyone.)
- May 28 to May 30 - Triprim seemed to be woorking - for first time in 7 weeks no locking up (of bladder) in evening - residuals under 100ml. See this as a 'window of opportunity'. Will try to get SPC taken out - back in the public system. Peter prepared letter / report for Dr Chou, Prof Moore, et al (see letter of 31 May here) to improve our chances of getting their attention.
- May 31 (Tue) - Set off from home (with praam and toddler) fro St George Hospital - to try to grab (which is literally what would have to happen) someone and get them helps us.
Went all over St George to try to find Dr Chou and get SPC out. Kept getting the flick. Dr Chou now only comes in fortnightly (Mondays) now, not due again for 5 weeks - because of long weekend coming up. Went up to Gynae Ward, no doctors around. Nurse Sue looked at SPC, which has been painful, she thought it was OK. Ward is full. Left letter with Christine Johns (Administrator Nurse, Gynae Ward).
Then literally tackled Dr Trent Miller (Registrar of Gynae Ward - in the front main building) coming out of Gynae Clinic (on the other side of the Hospital in the Richard Wing). He went back in, found a cancellation and slotted SK into an appointment to see a Dr Karantanis on Friday (3 June 10:00am).
Reception staff added something about Dr Karantanis does Fridays - implied he was like Chou - running a private practice, does a bit of public - and lack of money / doctors in public system (thus we may not get Dr Karatanis i.e. an assistant instead).
Went down to Dr Chou's private practice in St George Private Medical Centre. Got appointment for 5 July (2:30pm). Left his copy of the letter Peter prepared.
Sent Prof Moore her copy (registered post).
Dr Chou phoned (around 7:50pm) had received letter. Was impressed by attached bladder chart numbers. Said if still going OK in 3 days - agrees to taking out SPC which Nurse Werda (at PFU) can do. Said to do regular urine tests for infection (didn't say that before - a keypoint of our letter). Didn't think more antibiotics a good idea (usual reason i.e. lowering resistance)
- 3 June (Fri) - Attended Gynae Clinic. As eexpected, initially got an assistant Dr Venus Lam. Our letter given to Gynae for Dr Miller had not made it to SK's file! Peter explained all those points again. Enough to convince her to go get Dr Emmanuel Karantanis (RANZCOG - 'Locate an Obstetrician / Gynaecologist listing': St George Hospital, Belgrave St 9350 2272 cf Google: Pelvic Reconstruction and Urogynaecology
Unit, Department of Obstetrics and Gynaecology, St George's Hospital; Obs & Gyn SGH, Lecturer UNSW). He said to wait till Monday (6 June) if micturition numbers still good, especially if clamping off SPC at night will arrange for another doctor to take out SPC. In the end, Peter pinned Dr Karantanis down on an important point to us, he agreed that if bladder numbers were still good Monday CISC 'not' necessary - in other words, SK is pissing as well as any other woman in her 30s after 2 natural births. (At one point said something about checking to see if Gynae Ward had a bed on Monday.)
Dr Lam said earlier that Dr Karantanis is a Urogynaecologist and works with Prof Moore. Said that Dr Chou though just a Gynae is also good in the Uro area. Also said there is no difference in service compared to a VMO [visting medical officer]. Towards the end, Dr Karantanis indicated if you have any problems we have the great support of the Bladder Unit, as if he thought we had not been there yet. Dr Karantanis also told Dr Lam to give SK script for half tab of Trimethoprim for 2 months (cf. Dr Chou a few days earlier - didn't recommend any drugs). Took first half tab that night.
- 4 June (Sat) - SK feels like she is havingg a reaction to Trimethoprim and stopped taking for now - see what happens Monday - may be try to get antibiotic changed.
- 6 June (Mon) - Attended Gynae Clinic. Seenn by Dr Erin Martin. Gave her our story again. She went to consult other doctors - took our copies of pathology reports (especially 11 May one indicating untreated infection) which mysteriously didn't come back - she said she didn't take them. She said at least twice that SK "had fallen through the cracks" - seemed to know more about case than information provided in last 5 minutes.
It was decided to go ahead with taking out SPC. It will be done over at Bladder Unit. Alarm bells went off. In a panic we told her we had bad experiences over there and preferred being taught in Gynae ward. She threw in that there was a hospital home nursing service. (Supppsedly similar to that for mothers who just had a baby and all parties want them home as soon as possible.)
Tried to get backup appointment with Dr Karantanis - Dr Martin said he is away all this week. Contrary to what Dr Lam said Friday, Dr Karantanis runs a private practice too and is rarely available. She also said Dr Chou is more a surgeon / gynae, whereas Dr Karantanis is obviously more Uro-Gynae - she called him a "protégé of Prof Moore", although he does have some involvement with Gynae Clinic.
Early on, Dr Martin seemed to agree with having a urine test / culture done there at the Gynae Clinic, then seemed to forget about that idea. She agreed SPCs can have their drawbacks - colonization on the plastic - though she inferred this does not necessarily cause / lead to infection.
Now passed back over again to Bladder Unit. We pleaded not be sent there again, because nothing but problems. No effect.
Surprisingly, Dr Martin gave us SK's whole St George Hospital patient file (huge file, about 4cm thick, divided into 1st, 2nd, 3rd, 4th Admissions Sections - there were actually 5 trips to Gynae ward, probably one to get a leaking bag fixed was not counted, and 'Outpatient Section') to take over to Bladder Unit. Peter had a few minutes to rifle through it - back in April no mention of third option viz., CISC (clean intermittent self-cathetization) even Dr Kutessa was thinking of SPC. And couldn't find anything on a urine culture having been done to check efficacy of Cephalexin. Made some notes - lack of paper - Peter wrote on back of one of SK's old bladder chart sheets, which she later took in with her (this page didn't come back).
SPC removed by Nurse Virginia Ip (NCA - Nurse Competence in Aging - appears on Dept Urogynae letterhead - thought we would get Nurse Werda) - had to learn Lesson 1 of self-cath - setup followup appointment for Lesson 2 on 17 June. Got info sheets (compiled by CNC Urology) this time on how to use the catheter. SK's file says to learn self-cath before SPC comes out - what degree of proficiency? Even though Dr Karantanis had said on the previous Friday CISC would not be necessary!. File also said Dr Kutessa would remove. Dr Martin said he has some involvement with the Bladder Unit (as well as Dr Alex ?).
- 7 June (Tues) - We were surprised to walk into Dr Mikhail's (only works Tues & Wed) - the referral doctor to Dr Aslan - office, and the first thing she says is that she received a letter from Dr Aslan to say SK was being trained in self-cath.! (see 26 May) We had gone there to clear up Trimethopim doubts, seems that what happen on that first visit was that looking at the path report she wanted to use it and said, oh 'sensitive' to that one - i.e. the bacteria being sensitive, the 'S' on the report . Again they expect people off the street will not get confused, and will keep up with the jargon. (In fact we had learnt about the S & R earlier from the chemist). She agreed with the half tablet / 2 months course. And added better to leave urine test until a week after that finishes. Was also happy with the last 24 hours bladder numbers, since SK started flying without a parachute. When we filled her in on recent events she immediately suggested seeing Prof Moore if more problems, but then we reminded her of how pre-occuppied they get with research, attending conventions, writing for journals, etc.
- 8 June (Wed) - St George Clinical Informattion Office phone to say copy of SK's hospital file ready for pick up (exactly on time they said 3 weeks when request lodged 18 May).
- 10 June (Fri) - Picked up the file. Very iinteresting...
- Chilling feeling when realized it was no aaccident Dr Martin was told to see us on 6 June - she was sent in because she's the one that signed off on useless Keflex on 22 April... no wonder she nicked the pathology reports.
- 15 June (Wed) - Decided ourselves to do annother urine test.
- 16 June (Thu) - Dr Chou phoned tonight - sseemed to want to cancel appointments (27/6 public and 5/7 private). Knew SK had seen Dr Aslan so must have seen Peter's webpage.
- 17 June (Fri) - followup appointment with Nurse Ip. We thought she would just look at the good bladder chart numbers and send us away - end of nightmare.
But no, she wasn't impressed - micturition average too low (but supposedly typical of someone with incontinence before the operation, even - Dr Chou said it wouldn't fix that).
Nurse Ip wants to stick a catheter in. 150 ml comes out 20 mins after SK's last micturition. Too high says Ip.
Then comes what for us was a bombshell. Ip says the urethra is too tight (size 14 catheter), and that it could close up completely unless SK self-caths. She can't say for how long. Doesn't indicate how bad it is or what might have caused it.
SK very depressed. Ip better not be alarming us unnecessarily.
Why didn't Aslan notice the tightness on 26 May. And nurses in Gynae didn't notice anything in April. So unlikely to have been caused by surgery.
Peter went on Internet later. If there is, what apparently is called 'urethral stricture' probably caused by having catheter in too long with an untreated infection late April / early May (Dr Martin still prescribing Keflex on 22 April) - "Infection causes inflammation in the tissues in and around the urethra. These infections usually clear with treatment but may leave some scar tissue at the site of the inflammation which can cause a stricture."
Note, originally Karantanis said if the numbers were as good as that Friday on the Monday with clamping the SPC overnight he was happy to have catheter taken out and no learning to self-cath necessary.
Note also, Nurse Ip also felt no sign of infection - good urine color - no strong smell. On the way down that day had called into Dr Ong - Pathology Report received - no infection. So what's Dr Karantanis strategy about - 2 months of drugs?!
- 20 June (Mon) - a common occurrence: SK haas locked up - depressed, and negative - still affected by Ip's comments on Friday - she wants to jam a catheter up herself in desperation...
- 21 June (Tue) - Sydney Urodynamic Centre -- Dr Andrew Korda [Peter found on Internet - got referral from Dr Ong - standard practive he gets results letter - "Dr Peter Hogan" should get! cf Moryosef experience - Dr Loreema Johnson didn't exist!]. Korda did the following tests:
- Cystoscopy - A direct method of bladder study and visualization using a cystoscope (self-contained optical lens system). The cystoscope can be manipulated to view the entire bladder, with a guide system to pass it up into the ureters (tubes leading from the kidneys to the bladder).
- Cystometrography (CMG) - A test of bladder function in which pressure and volume of fluid in the bladder are measured during filling, storage, and voiding.
Test detected spasms - Dr Korda recommended Oxybutynin / Ditropan - what Peter had found before... they said to SK during 'non-fun' testing "look at the spasms..."
Research note: "Leakage - Bladder spasms are not uncommon in patients with long-term catheterization. The force generated by spasms commonly overwhelms the drainage capacity of the catheter, creating leakage around the catheter. This type of leakage should not be corrected by using a larger diameter catheter. Infection or catheter obstruction, if present, should be treated. Antispasmodics, such as oxybutynin (Ditropan) can be effective in alleviating spasm due to detrusor instability."
We got a copy of Dr Korda's letter to Ong...
Afterwards Nurse (Jenny) gave SK 1 tab of Triprim (Trimethoprim) - that's how easy it is to pick up infection. Later we told Ong to give us something else because it make her sick - Peter suggested Noroxin (used before with no problems) - Ong said no thats for UTIs - that's what we wanted - he recommends Bactrim - another $20 (for one tab) - get it home and look at box - it's another brandname for Trimethoprim!
- 24 June (Fri) - Cancelled appointment withh Nurse Ip at PFU
- 27 June (Mon) - Attended Dr Chou followup appointment (10:00am) set when SPC put in 3 May - to tie up loose ends. Reception said SK's file was staying over at PFU (had to fill out first-timer form) - too bad if we got another assistant - explain everything again. But got Dr Chou, told him what happened with Ip at PFU and then having to find a Urogynae / Dr Korda tests - spasms, overactive bladder, Ditropan...
Dr Chou noted all that and agreed that's it for St George.
Received call from PFU about making appointment with Nurse Werda (around 2pm - did they know about Chou visit??).
Phoned Dr Chou's private practice to cancel but he had already done so. Think he wants us off his radar screen.
(Sent in Annual Leave 30/6 to 20/7 and LSL - 88 calendar days - accrue 9 days per year - halfpay to mid Jan '06 - later phoned call - AP want reason for wanting LSL letter.)
- 19 July (Tues) - finally got to see A/Proff Moore ($150). She wondered why we came to private practice, especially as she has testing equipment at PFU, and that SK "had an appointment to see her at PFU"!. We explained how difficult to see her, about Nurse Ip screw up, and that the appointment was bullshit - made after we gave up to cover their arses at PFU.
She had our old 31 May letter sent to her and Dr Chou, on her desk, desperately asking for help (to which we never got a response). She confused that with the new letter / report Peter prepared for today's consultation, 19 July, on her desk also.
Prof Moore did examination, then came another bombshell that sent us reeling (in the same way Ip had). Prof told us that she suspected the whole problem might be a something rare, a 'Urethral Diverticulum' (little pockets in the urethra that impede urine flow) - set up MRI ($250) for 20/7 and followup appointment with her at PFU on 25/7
Peter's research notes later showed: "The most widely accepted theory implicates repeated infections of the periurethral glands with subsequent obstruction [the glands can't pass fluid, blood, whatever] eventually evolving into urethral diverticula....
Symptoms of urethral diverticulum can often be confused with other disorders such as interstitial cystitis, overactive bladder, or carcinoma in situ...
When proximal [Situated nearest to point of attachment or origin - "the proximal end of the urethra - bladder end??"] urethral diverticula become very large, they can obstruct the bladder outlet causing acute urinary retention...."
Research also shows UD may also be congenital and exacerbated by surgery mess.
So at this point Peter was thinking the UD may have been the original cause of retention after surgery. In any event clearly Prof Moore had more expertise in this area - back in April when doctors didn't know what was causing the retention, why didn't they pass file to Prof Moore - why isn't that a standard procedure at St George Hospital anyway!?
Bottomline, SK now faced the possibility of more surgery to correct the UD - more catheters! Her mental health state began to slide again. All through she suffered from a kind of schizophrenia - wavering between strength "I can handle this", to tantrums and falling apart. She'd say, "I don't need you any more, I can do this by myself" The reality being things were often worse because when Peter was not around, especially non-visiting hours in the Gynea Ward, SK struggled to keep up with English (not her first language) and medical jargon. How do families deal with a mess like this who don't speak English well, where the partner is poorly educated, and doesn't know how to Google on the Internet?!
- 25 July (Mon) - Saw Prof Moore. Serendipittous good news. Results of MRI showed no specific UD, just some "periurethral scarring"
Prof Moore said she had taken home Peter's notes and SK's Hospital File and read it all over the weekend - pretty amazing for such a busy professor.
Apologized for the mess we had been through and having to go outside the hospital especially to Dr Korda at Sydney Urodynmanics...
Prof recommended drop back to ½ tab of Ditropan
Did urine test - trace of blood - Prof gave SK script for 1 week of Trimethoprin (makes SK sick so went Dr Ong and got him to give us Noroxin).
Also we explained the big problems we were having with SK's employer, Australia Post, and how much of a mental drain they were on SK's already frayed nerves - Prof Moore gave us support letter to use against AP - especially to take 6 months Long Service Leave (at halfpay), see here.
Prof Moore wants to do a followup on 28/7 at private practice for Uroflow test.
- 28 July (Mon) - Saw Prof Moore. Checked urroflow. 93 ml residual. (Bladder capacity 600ml). Happy with progress. Wants to see her again at PFU for another uroflow (Dec 6). Prof Moore was also going overseas at the end of August.
- Dec 6 (Tue) - Attended PFU and saw Prof Mooore. Uroflow result - SK had 140 ml residual. Less than 5 minutes later SK tried again and released most of balance. Prof said when you go to toilet, don't rush it, try a second time to release any residual. SK still has been experiencing some dysuria. Prof gave her 2 scripts for urine tests and a script for a 'Renal scan', if SK does not feel things are improving. Wants to see SK again at PFU 14 March (9:45).
- Jan 3 ('06) - SK hasn't been feeling betteer, and we had Renal Scan. Report will be forwarded to Prof Moore.
It looks like SK's body will never be the same. Even though she is only in her mid 30s we are facing endless tests and specialists. In particular, what Dr Sly said after the operation still haunts us as a family, SK's uterus is hanging low, so sometime in future it will have to be raised. Another major operation is unavoidable. Will that mean we have to go through all this again from the beginning?!
* * *
- Hospital File - can't find instructions frrom Chou to Surgeon especially not to take out of uterus!
- Karantanis (Greek ancestry? - was in UK foor a while, later protege of Prof Moore) - admitted when quizzing SK about clamping off SPC that she clearly 'had not been told how to use it'.
- Keep hearing SK has just been unlucky to hhave retention cf. untreated infection!
- First visit to Werda just put hand on tummmy and said bladder was empty
- Ip should have known how psychologically ssensitive her area literally is
- Wanted SPC out because good numbers after infection fixed and concerns about SPC complications arising, especially spasms - need for Oxybutinin...
Other Points picked up from review of SK's Hospital File
- 16 April (2.11pm): Urinalysis - (T36%) why wasn't culture done - came in because of leakage - replaced IDC 14g - 9ml H20 in balloon - a sign to check for spasm - need for Oxbutinin / Ditropan - D/W Registrar Dr Izurieta suggested oral antibiotic cover
- 20 April: Dr D'Souza (?) #656 - suggested SPC as option 2
Op Rep 11/4/05 - Dr Jason Sly - 3rd recto 1st cysto 2nd uterine descent
Cf. Chou 25/8/03 & 27/10/03 - 2nd cysto-urethrocele, a smaller 2nd recto & deficient perineum - 1st uterine descent / prolapse cervix 5-6cm above vaginal opening / introitus - strong pelvic muscles (? How does prolapse happen then - why need for Kegels?)
Aneas. 14:05 - IN OR 14:54 OUT OR 16:31
- Interns Kenny Sze & Owen Young
OP / OT Care Plan 0 12FR / 5cc Silicone
- 11 April: Sly "discharge if 200ml residual"
- 22 April: "If 2 x residuals < 10-200 ml discharge" - O&G Reg Dr Izurieta #982 - Dr Martin same in discharge report 22/4 - Dr Cario D/W Consultant of the Day
- 13 April: Miller - "failed TOV - may need to stay in for 1/52"
Can't find in file specific instructions from Chou to Surgeon especially re plication of bladder neck ("we are aware may worsen incontinence" ??? - don't remember mention of plication of neck) - in letter to Ong 21/3/05 - and no uterus out - not what he told us at the actual consultation on the 21st
(Chou cc'd self at St George Private Suite 13 level 3)
Various resident doctors during various stays in Gynae Ward of St George Hospital: Dr Will Kutessa, Dr Trent Miller, Dr Izurieta, Dr Sousee(? D'Souza?) Dr Erin Martin, Dr Alex (?)...
- 6 June: Dr Martin states in file - self-cath in PFU - even though Karantanis had said previous Friday not necessary if continued good bladder numbers
Ip 6/6 in file - "self-cath... slight urethral resistance" - 17/6 she says may close - why didn't gynae nurses - if size 12 catheter used in surgery, size 14 IDC stuck in for 3 weeks (or Aslan would have noticed) why would it be closing...
A Current Affair - Ray Martin - 14 June '05 - hospital deaths died of malpractice - Dr Marrow..
Bundaberg's Dr Death...
News report 24 June - 12 hospitals 4 sydney - not up to standard - NSW Public Health System
ABC - Stateline - 24 June '05 - The Cancer Report- Sarah Schofield - some kind of patient cancer group - producing a ranking directory of surgeons - good and those to avoid - lack of surgery :
"Sally Crossing, Cancer Voices: We get a lot of statistical information about numbers of diagnoses and deaths, but we have very little information about the outcomes of treatment and outcomes of patients...
Sarah Schofield: The report was compiled by a group of doctors at Liverpool Hospital. The group is called the Collaboration for Cancer Outcomes Research and Evaluation. But it's more commonly known by its acronym, C-Core..."
Medical Error Action Group - Lorraine Long 02) 9362-8112.
26 worst hospitals shamed
By Clara Pirani
June 25, '05
"26 hospitals and health facilities across Australia have been told to improve patient care within 60 days or risk losing funding. However, patients have no way of knowing the seriousness of the problems at the sites that failed to meet minimum accreditation standards.
A report by the Australian Council on Healthcare Standards reviewed 640 health facilities nationwide on a range of criteria including patient safety, infection control, quality of equipment and whether there was adequate staffing...
Hospital safety experts yesterday said only the threat of public exposure would force hospitals to improve healthcare standards...
51% of hospitals labelled 'too risky'
Clara Pirani, Medical reporter
June 24, '05
More than half of Australia's hospitals and health facilities have inadequate systems to prevent and review medical errors and ensure patient safety...
= = =
Reports / Documents
- Note: obtained most copies, except Surgeonn's (Dr J Sly) Report - did not get a copy on discharge - requested copy, indeed got whole hospital file on 18 May (takes 3 weeks, due 8 June)
Once glimpsed it in Gynae Ward, a brief paragraph with Dr Alex (?) she said nothing special in it. Though, Dr Sly came round after surgery, said the uterus was hanging low and that in the future would have to be raised (thought that was what operation was for!) or taken out. Apparently soon after Sly transferred to Wollongong Hospital - never saw him again.
Some of the Tests (mainly outside hospital)
- Ultrasound - 23 May - "Kidneys are within normal limits"
- Pathology Report - 20 May :
"Blood - trace
Culture- Heavy Growth Org 1: Coliform
Urine: Possible bacteriuria, possible contamination, a repeat specimen is recommended to clarify.
Organism identified as Raoultella ornithinolytica"
- Pathology [Interim] Report - 19 May :
> "Blood - trace
A urine with these results is not usually infected [turned out it was, see above]. Although culture has been performed, a further report will only be issued if the culture is positive.
- Pathology Repport - 11 May :
" Culture- Heavy Growth Org 1: Enterpbacter aerogenes
Possible urinary tract infection"
Hospital Discharge Reports
- 4 May Discharge Report:
Urinary retention post-op
6/52 post A/P repair
Continues to have high post void residuals decided on long term SP Cathetization until reolves
Seeing Cont adviser for asssistance
To see Dr Chou in 4 - 6 / 52
Gynae Clinic 27/6 10AM
Dr Kutessa 898"
- 22 April Discharge Report:
" Urinary retention
Elective admission on 11/4/05 for anterior posterior vaginal repair (for stress and genuine incontinence)
Failed TOV post à op à discharged õ IDC
Readmitted for TOV - failed (684 residual)
à discharged home õ IDC & free drainage leg bag
à to return in 5/7 for TOV
To return on 26/4 for TOV
- if residuals (x2) < 100 - 200 mls then d/c
- if fails then SPC
Dr Martin 642"
- Constant Panadol for first few weeks and VVoltaren 50mg - apparently to reduce any inflammation.
- 22 April: Diclofenac (Diclohexal - same ass Voltaren??) - 50mg 1tab 3 times daily16 April: Keflex / Cephalexin and another course 21 April (turned out to be resistant!)
- 12 - 14 May: Noroxin (twice daily for 3 daays)
- May 20: Macrodantin (Nitrofurantoin) - preevious pathology report already said resistant! So not taken.
- from 24 May: Triprim (once daily for 7 dayys)
Some Research from Internet:
"Anticholinergic - An agent that blocks certain nerve impulses.
The anti-cholinergic oxybutinin (Ditropan) treatment in patients with chronic indwelling catheters signicantly reduced the incidence of kidney damage, i.e. 3% compared to 23% in patients not taking oxybutinin (Kim, et al. 1997). Male patients who have chronic leakage can have urethral closure combined with SC (Grundy, et al. 1996)
Drugs may be used to control the symptoms produced by a neurogenic bladder. The unwanted contractions of an overactive bladder with only small volumes of urine may be suppressed by drugs that relax the bladder (anticholinergics) such as propantheline (Pro-Banthine) and oxybutynin (Ditropan)...
Pharmacological advances have been slow. However, the world standard anticholinergic agent, oxybutynin, was recently approved by the Australian Drug Evaluation Committee for general use in Australian patients with detrusor instability...
Long-term management for the individual with an overactive bladder is aimed at establishing an effective spontaneous reflex voiding. The amount of fluid taken in is controlled in measured amounts during the waking hours, with sips only toward bedtime to avoid bladder distension. At regular intervals during the day (every four to six hours when fluid intake is two to three liters per 24 hours), the patient attempts to void using pressure over the bladder (Crede maneuver). The patient may also stimulate reflex voiding by abdominal tapping or stretching of the anal sphincter. The Valsalva maneuver, involving efforts similar to those used when straining to pass stool, produces an increase in intra-abdominal pressure that is sometimes adequate to completely empty the bladder. The amount of urine remaining in the bladder (residual volume) is estimated by a comparison of fluid intake and output. The patient also may be catheterized immediately following the voiding attempt to determine residual urine. Catheterization intervals are lengthened as the residual urine volume decreases and catheterization may be discontinued when urine residuals are at an acceptable level to prevent urinary tract infection...
Every attempt should be made to keep the drainage system closed. Any break in the catheter-to-collection unit may invite earlier infection. Infection in the catheterized patient is suggested by signs or symptoms of pyelonephritis, (fever greater than 38.3°C [100.9°F] for more than one day, mental status changes, hypotension), unusually cloudy urine, more frequent blockage, and new or increased detrusor spasms...
- - -
Obtain urine specimens aseptically
- - -
Bladder spasms are not uncommon in patients with long-term catheterization. The force generated by spasms commonly overwhelms the drainage capacity of the catheter, creating leakage around the catheter. This type of leakage should not be corrected by using a larger diameter catheter. Infection or catheter obstruction, if present, should be treated. Antispasmodics, such as oxybutynin (Ditropan) and flavoxate (Urispas), can be effective in alleviating spasm due to detrusor instability
- - -
Detrusor muscle: Contracting muscle in the bladder that helps to expel urine
- - -
Long term use of clean intermittent catheterization is vastly preferable to indwelling urethral catheterization (leaving a catheter in the bladder) because of the lower risk of serious infection and other problems. If an infection occurs it is usually managed without causing damage to the kidneys.
Granulomatous lung disease - granuloma - A tumour composed of granulation tissue resulting from injury or inflammation or infection
Specific to hospitals and doctors:
- Hospital file format problem - e.g. findinng whether culture done - what's available on computer - should be in a top section with other really important information. With the system of have so many doctors - lots of rotation, and apparent shortages of staff, overworked staff - they don't have time or inclination to read through a thick hospital file
- no culture check to make sure Cephalexin eeffective - no getting off IDC - ASAP thru self-cath training in Gynae Ward (cf.. Cairns Hospital) - with IDC no Cystometrography (CMG) to check for spasms - need for Ditropan - and again after SPC out
Like any profession, mostly dedicated personnel, but crappy systems and procedures...
Generally, pressuring political parties to make Pelvic Floor Care major election issue - if what we do, saves just one family from going through what ours went through, then it will be some consolation.
And to proceed with setting up a not-for-profit organization called the "Pelvic Floor Care Foundation").