Side Effects

This week has been a bit of a strange week.

The previous week we had record temperatures here - above 43.8 degrees (it was probably higher but the digital thermometer stopped working at that temp!) and sustained high temperatures - above 38 degrees for the week or so before hand!

We then went into a 22-24 degree week with quite a lot of rain & humidity (ie, <> 80% humidity).

Needless to say that the bleeding or irritation was substantial & the bleeds were excessive - 40 mins to 1hr 20 - and very flowing & difficult to stop rather than the "low pressure" drip type bleeds.

The previous Thursday I saw my city ENT who put me back on the waiting list for surgery.

Unfortunately this week I did not cope to well & put in an urgent call to the specialist & also visited my GP.

The side effects this time concerned me a bit.

Apart from the weakness & light headiness, I had big cramps in my legs and arms and flu like symptoms - it felt like the iron was being pulled from my marrow - giving me aching feelings.

I also had pins & needles in both arms & legs which wouldn't go away for a while. I've had pins & needles in a spot before - usually when you haven't moved the arm or leg for a while, but this was crazy.

Then the severe headaches came back.

Unfortunately I could not stop a lot of blood from being swallowed - it's a catch 22. It has to go somewhere... So I either block it at my nose & divert it down my throat or let it flow out. It does eventually stop but not nice.

That has a side effect on the intestinal system so that the day or so later my "output" is black & sticky & not very nice to be around.....

The last day or so has been better - back to small bleeds only, but I'm very weak.

My doctor put me on some antibiotics, just in case I have an infection in the nasal area. Who knows? It's a possibility having a continual open "wound" could let germs in...

I went through this with the ENT in town & he & his staff spoke with the hospital.

On Monday night it was a close call, maybe being a bit too stubborn again, but I should have gone to hospital - but it's too much of a bother.

I broke my 20 minute rule 3 times over. The bleeding eventually stopped after an 1 hr 20 minutes. But it was more stubborn than me!

The earlier part of the week was a "6 tissue box" event. But over the full week I've gone through about 11 boxes now. A big week.

The good news is that I got a call yesterday to say I've been put up a list - and they can fit me in next Thursday!

ENT Visits

I have a number of friends at other hospitals & had relayed the above story to them - who of course were mortally horrified that that would never happen at there hospital....

I was so surprised when I visited my normal ent and she grabbed me by the arm and told me half the story of what had happened to me. We only realised at the end that I hadn't actually told her this story & she had heard it from someone else!!!!

My ENT was in fits as the story was so absurd.... that if she hadn't known it was me - she would have sworn it was made up!

Anyway, with subsequent visits we agreed (but I forgot) that I had to go to the new city ENT.

So after the last ENT visit I ended up at the wrong ENT... if that makes sense. This time that was a bit dangerous for me as I had to wait 2 weeks to get into her and then 3 weeks to get into the city ent. If I had known at the time I should have gone to the city ENT directly.

I did so last week and had a good chat with him. SO I am back on the waiting list for my "favourite hospital" - I think classed as semi urgent.

I mentioned to the city ENT surgeon only about the needle incident, and he said that under no circumstances was I to have that injection (!) and he had not prescribed it (!) and no-one had asked him about it (!).

So much for the honesty of the treating nurses then - we decided one of the ward doctors must have prescribed it without checking first!

A friend of mine said next time let them do it then I can sue them for medical assult!

For this admission, I have been very specific & have noted that I am alergic to this drug. Not so much allergic as can potentially react to it in a very bad way.

I misunderstood things previously about the length of time to stay in hospital. I signed myself out the next day (partially due to the experiences listed above) as I was not very impressed at all. In hind sight that may have been a bad thing as within 3 days or so the mending will come away. I was lucky in that the scabs came away gently - but if they tear I can have very major bleeding - which may be difficult to stop without further procedures....

I know now.

SO I am back to very bad bleeding now (40 minutes - 1hr20) so they are going to put me up the list. THe problem with it is these are very bad bleeds - not little drips but huge gushes which flood a pile of tissues in seconds.

That's why it's got to be looked at urgently...

After the recurrance of the current bleeding, I need to get back into hospital urgently!

My Last Trip to Hospital

Anyway, the trip to hospital was interesting. Very different to my local hospital. I thought it was very disorganized & was very worrying with how they treated their patients / clients or whatever.

I got a great spiel when I went in as they classed me as a private patient as I had private medical insurance. It didn't really worry me as I had to be treated anyway.

On admission I was given ("sold") the benefits of being a private patient. Free car parking, Free newspaper and Free TV.

Well, I got dropped off so we didnt really use the parking. The newspaper I got was an afterthought on the way out... and the free tv had like 2 foxtel channels and was so tiny I really had to wear my glasses to see it - It was so tiny!

After the op I was in a ward with 3 others (maybe 6 in total - cant remember now!)

The preliminaries were interesting. Didn't mind waiting the 3 or 4 hours with nothing to eat in the morning with other patients and their visitors eating in the waiting area.... and noticed a number of signs about hygeine and washing hands etc. Sounded ok.

Went into the booking area and got weighed ( I think their scales were way over - I could not have weighed more than I did the previous day after eating nothing???!!!). The nurse took down my medicines - I had thought ahead and brought them all with the pre-printed chemist labels and she dutifully transposed them onto a myriad of forms. I got one of those hospital plastic bracelets & was told to strip off - everything including the underwear. This sort of surprised me as every op that I've had in every other hospital was ok to wear cotton (not synthetic) underwear.

This was very uncomfortable for all the patients in the area - especially the older folk who were definitely uncomfortable with this practice! I asked the nurse why but didn't get an answer other than it's hospital policy....

I waited with the other patients for quite some time like a traffic jam waiting with all the other patients going to theatre...

This gave me plenty of time to watch.

The new nurses came on shift - it seemed as though only one was a regular & the others were temps. The nurse was going to great lengths explaining their policies and procedures and yes - not the green form, they have to use the white form... sort of explanations.

Even the orderlies seemed mismatched there - with discussions like we don't do it like that here, we do it this way....

Anyway I eventually got wheeled up to theatre - Although the hospital was a square in shape, the corridors angled off so I got totally lost & had no idea where I was (even when I was in the room I had no idea of where I was in relation to everything else...)

It was funny as I couldn't remember my surgeon - and didn't recognise him in his theatre gown!

I was hoping to get a glimpse of the machine they were going to use on me but I was out to it very quickly and in recovery before I new it!

There were about 4 anaesthetic staff I met, including the actual anaesthetist who was a very nice lady - she said that I'd get a bill from her but not to worry if it was more than the gap... Nice lady!

The previous op that I had was very very messy. I had dried blood in my hair, in my eyebrows and around the back of my neck. I still wonder how all that happened as it was my nose not elsewhere that got operated on!

I understand though that my particular op is very messy. It's one of the main blood vessels that's under pressure. Once the scabs come off it's like a high pressure hose that bleeds - hence the masks, gloves and other stuff that they all wear - and hence the mess.

Anyway, the recovery was interesting. I think on at least 4 occasions in the room I asked the nurses to check the medications - Normally I get a type of gel cream that has to be applied to the nose to keep it moist - and i think it is an antibiotic too to keep infection out. Each nurse checked the charts and confirmed that it had not been prescribed. This surprised me - but I assumed different hospital, different techniques.

I was really surprised come the late nurse - asked her the same question and she said yes - it was on my chart & didn't I have it!!???

I also had a nurse - 3 different nurses (afternoon, evening & morning) try to inject me with a substance. None of them could explain to me what it was & why - other than it was hospital policy to give everyone that had an operation there this needle.

Thankfully I had my wits about me & managed to enagage in conversation to try to work it out. Strangely though all the nurses got defensive & started arguing with me as to why I was refusing treatment!!! One nurse complained that I was going against my doctors advice! I said to her did my doctor know that what it was she was injecting? They all said that they would actively write on my file that I had refused treatment - all without explaining to me what it was they were doing!

I since found out that the injection was heparin - a blood thinner. A definite no-no for someone that has this type of bleeding disorder!

I mentioned this to my ENT's and they were horrified that the staff knew the type of problem I had and had assumed that this type of needle was ok for EVERYONE!

Unbelievable. I was told that I was right to refuse treatment!

The catering staff were interesting.

When I got to the room there was already someone else's cup's there. I asked the kitchen staff when they delivered the evening meal to take it away - all she did was grunt at me as she pushed the dinner towards me. In the end it was like a wild west standoff. So I moved the cup out of her way - she slammed the food down & turned her back on me and walked off!

The bin in the room was overflowing & not emptied the whole time (2 days) that I was in there.

I had trouble with my medicinces as the bleeding upsets my tummy & the one experimental medicine I am on also upsets me - I have to have them at a particular time.

however, this was not convenient for the nursing staff and I found later that they have a pill nurse.

2 of the nurses checked my medicies (pm & am the next day) and argued with me that I had an illegal prescription because the first nurse in admission had written 16mg on the admission papers and I had 32mg. I've had 32mg of this medication for some time (1.5 years) and they were telling me that the chemist had illegally prescribed it to me?!!! They refused to administer it and refused to allow me to take it when I needed it (ie, with meal, not at 8pm).

So they left the medicine draw unlocked & I medicated myself....

Well, the 8pm pill nurse came along to give me my medicine and was beside herself as I had done it myself (I am over 18 now!) She gave me the one that I didnt have & took everything & locked it away.

This caused me a problem later in the night as I needed a puffer for asthma - my throat was not too good after the op - and I had breathing trouble & I couldnt get to the puffers nor have the nurses respond to the call!

The night was interesting. A lady down the far end of the wards was crying for ages 'nurse' 'nurse' (actually a bit like that ad the unions ran a few years ago!) and no-one would see to her.
That was sad as the nurse eventually got up from her station and yelled at her that she was a silly old cow and that people are trying to sleep so shut up!

Love the bedside manner.

She carried on again & got another talking too....

Also the nurses were complaining in the late evening about job demarkation. That's a num's job (nursing unit manager)! - or a RN's job (Registered Nurse) - at the door to our room. Not very professional.

The poor guy opposite was struggling after his op - the 2 other people in the room were telling the nurses that this guy needed a particular drug/pill to relieve the (wind) pain & was ignored. At 11 at night the doctor came & administered morphine and about 1 am finally have the guy the medicine he needed.

The choice of food was excellent.

The drinking/fluids were very surprising.

Water or cordial!

Yes - cost cutting I am sure!!!!!!!!

The following day was just as eventful. I did get discharged but the nurse could not release the canular from the drip. It was turning in my hand as she tried to disconnect it. She went away & got another nurse who managed to release it.. & then got the hand bandaged.

I got up to get changed and noticed my wrist had gone red with blood - the canular hole kept bleeding after it was removed. I got one of the nurses who said it happens all the time - sit down & apply pressure & it eventually will stop - which it did. I asked for a new bandage & was refused - so I went home with a blood soaked wrist & bandage which was not very professional!

The last almighty concern was with the patient in the bed next to me. Lovely lady - She apparently had something very major go wrong in surgery and had a "warden" with her. The other patients played up on this and used the nurse to attend to fluffing their pillows & was good for a chat.

The administrators came in the following day as we were readying ourselves & closed the "cone of silence" around her (ie, the curtain). It's amazing how sound proofed these things are!

Anyway the story goes that one of the nurses on duty was "after her" - in a threatening manner & had said she was going to do her in with an injection... All a big fuss and worse.

We left shortly after that, totally amazed with the hospital experience. All to know that I'll be returning there again.............

Update on Bleeding

We'll I'm a bit late at updating this one, but I did end up in hospital and underwent the new treatment which seemed to last me quite a while this time. Much better results than the standard electrocauterization.

They did the procedure in September 2008, and minor bleeding resumed after about 3 weeks. Nothing too major. I did get some muck out about 2 days after the op - but I guess that was normal.

I lasted around 3 months this time before the bad bleeding came back.

I've been managing up until January 2009 when the severe bleeding returned. I sort of rate the bleeding into categories. Normal bleeding lasts 10-20 minutes - a good bleed stops after 5 or so minutes. I dont mind them at all. The problem ones are 30-40+ minutes; with the ambulance calling ones / hospital ones much longer than that.

Since the regular cauterization ops the bleeds are more managable.

I've only started the 40 - 120 minute bleeds lately. Feels like a waterfall - just gushing as soon as I release the pressure. So the trick is DONT release the pressure!!!

My nose goes numb after about 20 minutes so I usually release the pressure a bit to see if it's slowed (and to give my nose a break!). I think I even got pins and needles in my nose once as I was holding onto it so tight!

Waiting Lists

I had an interesting discussion with my normal ENT (this happened about a week after the ambulance visit...)

I sort of felt that I was not in control - ie, the condition was getting worse & I was not managing it properly, so I had to go back for a fit-in appointment...

I got asked a basic question - I have private health insurance, so why hadn't I had the operation yet?

This seemed a very logical question - and I had no answer!

My ENT called the sydney specialist & I called as well.

What we found out was that yes I could be seen as a private patient (urgently) but the machine that I needed treatment with had a waiting list - which means that I have to wait in a queue with everyone else for it & that waiting list is managed by the hospital as the machine is a government machine....

SO you have a 30 day list, 90 day list & so on.

When I spoke with the Sydney ENT, I had been put on the 90 day list which after speaking with them the second time means about 9 months?

So I got moved up to the 30 day list which means about 3 months...

But after the 2nd visit to the ENT & then ambulance visit, they classified me as urgent - so I think it took about 2-3 weeks to get an appointment scheduled.

I'm quite confused how this process works - this is for Bankstown Hospital. Not like the procedure that I undergo when I go to Nepean. I guess I am lucky in that I dont need a special machine when I go to Nepean (they dont have the same technology there - it's just the standard equip) so I have what needs to be done as & when required (usually with about 2 weeks notice).

I guess the other interesting this I learned was that in this case having private hospital cover makes no difference! Which I guess was a misunderstanding on my part...

Very confusing!

Now it gets more interesting if you google waiting lists - you get a Australian Government definition of waiting list - being anything that doesnt need to be done within 24 hours..... see http://www.aph.gov.au/library/Pubs/BN/2007-08/Hospital_waiting_lists.htm

The NSW department of health has an interesting policy document on waiting lists - fascinating reading... So you get up the list if it's likely you'll end up in hospital anyway??!! http://www.health.nsw.gov.au/policies/pd/2006/pdf/PD2006_020.pdf

trying to get the actual waiting list tiems for the nsw hospitals seems difficult - you follow one web link to another, etc and then end up with a general info page. not very helpful at all!

I did find this link... http://www.health.nsw.gov.au/hospitals/waitingtimes/summary.asp

It's interesting to see the current pdf report http://www.health.nsw.gov.au/resources/hospitals/waitingtimes/pdf/Jun2008.pdf

ENT procedures at bankstown are listed as 8 months wait!!!!! Nepean is only 3 months - but they dont have the special machine.

Interestingly, there were 2,030 patients waiting at nepean! and 1,845 at Bankstown..




- Raymond

It's been over a month now

Time flies - I cant believe another month has gone!

The last few weeks have been very tiring.

I am finding that I am bleeding a lot at night at the moment, so my sleep is very disturbed.

I had a very bad series of bleeds during last Thursday (am & pm) and spent most of the day at home trying to be quiet - Very messy otherwise!

Then some good news! - I had about 4 days in a row with no bleeding. I started to feel again what 'normal' was like - It's nice to have a bit of energy & not feel so lethargic.

But I'm back to normal again, with small but frequent bleeds in the night & a few in the day.

Monday has been confirmed as the 'op' day - I'll be in for 2 days. Partially because the hospital is a little away for me to travel & it's difficult to get to & back again (on my own with anaesthetic etc =- you're not supposed to drive & so on for 24 hours).

I got into trouble during 1 hospital visit when I got caught carrying my plastic bag of things out with me a couple of hours after the op. Big trouble for that. Apparently not supposed to do even that!

Proably too I'd lost a lot of blood, had a few needles & things & was very pale - that may have had something to do with it too.

Anyway, I'm very hopeful that this new procedure will give me relief for a greater period of time.

The specialist says it's not a cure, but better than the standard cautery.

I just have to hope that they dont cause a performation this time (blowing a hole in my nose through my nose....) or loose a lot of blood.

I think I am O+ ... so that's pretty common I think! (about the only thing about me that is common!)

Anyway, I'll know more next week.

Success will be defined as no more bleeding for a few weeks (6 weeks if I'm lucky!) and failure is just the same as now (or causing a perforation).

Visit from the boys in blue...

no, not the police - the ambulance. They wear blue too!

Over the last few days the bleeding has come back - quite severe this time. Started Sunday night (or is it Monday morning) about 3am - just woke up, didn't see any blood & went back to sleep. At 4.30 it started with a vengeance - very fluid & flowing...

It took over an hour to slow & stop whilst I watched a little bit of early morning tv, then fell asleep on the lounge. It started again at 7,.30 for 15 mins & stopped then at 9, when I was out at a client, it started again.

Not much fun.

Today a couple of smaller bleeds, then tonight b4 7, it started gushing & wouldnt stop. After about 40 mins I called an ambulance - the specialist said when I've had a lot of nose bleeds, only let it go for 20 - so I let it go for another 20, just to make sure it wasnt going to stop. 000 operator was a bit frustrating as it's hard to talk clearly & bleed at the same time. I thought your name & address & phone number came up on the screen automatically, but had to repeat myself a couple of times.

Anyway - after 8 the ambulance came - just as the bleeeding stopped. I was in a bit of a mess but they just settled me, took my blood pressure & made sure I wasnt going to pass out.

I think it took them longer to do the paperwork than anything else.

So I feel quite sore now - I find that when I've bled alot - and very thirsty. I think I've drunk about 8 large glasses of water since & still want more.

Very messy - will need yet another change of clothes but that's life!

Very light headed - had an hydrolight (one of those ice block thinggies with the mineral stuff in it) & felt heaps better after that. I know tomorrow I wont feel well at all so it is a couple of days rest for me & a call to the specialist to see how that hospital waiting list is going....