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....

Updated Pathology Results

Yeah - the results are in.

A benign colloidal mass? I think I got that right. It just has to be monitored regularly & we'll see how it goes.

I asked the doctor about the "eye flutters" and leg cramps - he said something about stress & muscle fatigue - probably related to the blood loss & tiredness etc.

So some magnesium from the health food shop should help stop that.

So I just need to wait now for my name to come up at Bankstown Hospital... for the other surgery!

- Raymond

Initial results from Ultrascan

I got some initial results from the ultrascan today.

On the left, I have a vascular lump 2.5cm x 2cm x 1.7cm "circumscribed heterogeneous solid nodule with central cystic degeneration and tiny areas of calcification".

On the right I have a 3.9mm solid nodule & 2.7mm hypoechoic nodule. I wonder if that means I have 2 lumps or whether it's one with 2 characteristics?

So I guess the concern now is that I have a 'complex solid nodule with a cystic structure & calcification and moderate vascularity - 2.5cm in diameter'

So I will have to have a biopsy after all - booked in for Friday morning.

I had to call up a medical dictionary to look at some of the terms - (ultimately I know not to rely on the radiology report; I need to have some clarification from the pathology & my other doctors)

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from wikipedia & medical-dictionary.thefreedictionary.com

Vascular: An organ or tissue that is vascularized is heavily endowed with blood vessels and thus richly supplied with blood.

circumscribed:bounded or limited; confined to a limited space.

Heterogeneous is an adjective used to describe something that has a large number of variants or different forms; is one that consists of many different items, which are often not easily sorted or separated, though they are clearly distinct.

A nodule describes an aggregation of similar cells or particles

Interestingly, A cyst is a closed sac having a distinct membrane and division on the nearby tissue. They may contain air, fluids, or semi-solid material. A collection of pus is called an abscess, not a cyst. Once formed, the cyst could go away by itself or will have to be removed using surgery

degeneration: deterioration; change from a higher to a lower form, especially change of tissue to a lower or less functionally active form

Calcification is the process in which the mineral calcium builds up in soft tissue, causing it to harden.

hypoechoic: in ultrasonography, giving off few echoes; said of tissues or structures that reflect relatively few of the ultrasound waves directed at them


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My general understanding is that a calcification or round lump/nodule is nothing to be concerned about. However the vascular & irregular lumps are more of an issue - that's the vasular and Heterogeneous one.

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I did a search and found this one in wikipedia: http://en.wikipedia.org/wiki/Thyroid_cancer

It's interesting to note that....

The blood assays may be accompanied by ultrasound imaging of the nodule to determine the position, size and texture, and to assess whether the nodule may be cystic (fluid filled). Also suspicious findings in a nodule are hypoechoic,^[3] irregular borders, microcalcifications, or very high levels of blood flow within the nodule.

Less suspicious findings in benign nodules include, hyperechoic, comet tail artifacts from colloid, no blood flow in the nodule and a halo, or smooth border.

so the fine needle biopsy is a good alternative at the moment in the diagnosis of what these lumps are...

It's interesting, from memory, some of my thyroid function tests have been low (and back to normal) again over the last 18 months or so - we just assumed that it was due to the bleeding HHT disorder.

So it's interesting to find these lumps now.

I didnt know where the thyroid was, so when they did the ultrasound, I was a little surprised. See this image


http://thyroid.about.com/library/links/blthyroid.htm

Symptoms of hypothyroidism usually go along with a slowdown in metabolism, and can include fatigue, weight gain, and depression, among others.

The symptoms of hypothyroidism are often subtle, but can include

• Fatigue *yes
  
• Depression *
  
• Modest weight gain*
• Cold intolerance
• Excessive sleepiness*
• Dry, coarse hair
• Constipation
• Dry skin
• Muscle cramps*
• Increased cholesterol levels*
• Decreased concentration*
• Vague aches and pains*
• Swelling of the legs*

Interestingly I've been complaining that my hair feels different at the moment. It used to be very thick, but now it seems quite thin, different to normal.

I've also had some really really bad cramps in the legs - the last one on saturday night/sunday morning was so bad I couldnt straighten my leg for the day nor put any sort of pressure on it. It's taken about 36 hours to come good! I've had some leg cramps (only 1 other bad one like that) but given 1/2hr or so it sorts itself out.

I'm getting around the memory problem / concentration problem by utilising a diary & notebook - didnt realise it was also an issue until I saw the above list!

I thought it was me getting old!

The chronic fatigue & tiredness we put down to blood loss; but maybe not!

Interesting again...

Ultrasound

I visited the local ultrasound place today & had the scans on the thyroid.

Took about 20 minutes - get the results next week.

Thankfully no needles! (this time anyway).

I took Christopher along. He thought it was great - watching the radiologist work & watching the bits come up on the "tv" screen!

Doctor's Visit

I went through with my normal GP the circumstances of the last couple of weeks to bring him up to speed.

My blood pressure is still above normal, so he's increased the "AM" medication with a review in 2 weeks. It's not too high now, but needs to be lowered for my hospital visit.

He went through the scan report & advised me that I now have 2 lumps on my thyroid. Interesting as my thyroid readings have been a bit up and down lately (say over the last 9 months). So I'm wondering if that's related! That would at least account for why I've been putting on a bit of weight & very tired & lethargic.

The report requires further scans - an ultrasound (which I've booked in for SATURDAY - a nice way to spend the weekend...) and then a fine needle biopsy.

That does not thrill me at all, but has to be done.

It will be interesting to see whether these 2 lumps are a cancer or just something benign. Only time will tell.

I'm just grateful at this stage that these lumps were 'accidentally' discovered!