Raymond Brooks

Blood Type O+

2009-02-23T22:44:00.002+11:00

I'm glad to see I'm one of the most common blood types!

see this info - http://www.giveblood.redcross.org.au/page.aspx?IDDataTreeMenu=42&parent=30

This was also interesting - from the same page, what blood types can be used in what operations...

anemia

2009-02-23T22:36:00.002+11:00

was just doing a little research on anemia & found this interesting information.

http://www.mydr.com.au/heart-stroke/iron-deficiency-anaemia

also

http://www.mydr.com.au/tests-investigations/full-blood-count-fbc

My blood tests at hospital indicated I was 11% below the minimum blood volume and on the lowest end of the Haemoglobin (Hb) scale

What is HHT

2009-02-19T19:30:00.003+11:00

... from the HHT site

http://www.hht.org/medical-scientific/

HereditaryHemorrhagic Telangiectasia (HHT) is a multisystem vascular dysplasia characterized by the presence of multiple arteriovenous malformations (AVMs) that lack intervening capillaries and result in direct connections between
arteries and veins. Small AVMs, called telangiectases, close to the surface of skin and mucous membranes often rupture and bleed. The most common clinical manifestations are spontaneous and recurrent epistaxis and multiple telangiectases, which commonly appear on the lips, face, tongue or hands in adulthood. A minority of individuals with HHT have symptomatic GI bleeding,which most commonly begins after age 50 years. Large AVMs often cause symptoms when they occur in the brain or lung; complications from bleeding or shunting may be sudden and catastrophic.

HHT is an autosomal dominant disorder caused by a mutation in one of at least several genes. HHT type 1 (HHT1) is caused by a mutation in the endoglin gene (chromsomal locus 9q34); HHT type 2 is caused by a mutation in the ALK 1

DIAGNOSIS
The clinical diagnosis of HHT is considered:
Definite when three or more of the criteria below are present
Possible or suspected when two of the criteria below are present
Unlikely when fewer than two of the criteria below are present

Diagnostic criteria for HHT:

Nosebleeds(epistaxis): spontaneous and recurrent
Telangiectases: multiple, at characteristic sites, including face, lips, oral cavity and fingers
Visceral AVM (pulmonary, cerebral, hepatic, spinal) or gastrointestinal telangiectases (with or without bleeding)
Family history: a first degree relative with HHT according to these criteria

( I have 1, 2 & 4)
(Mum has 1, 2 & 4)
(My Mum's Mum had 1,2 & 4)
My great grandfather we think also suffered from bleeding.

fiber-optic diode laser

2009-02-19T19:03:00.002+11:00

I've done a little bit of googling on this equipment and it does seem to be a very recent innovation.

see http://www.mlt-laser.de/html/hno_medizin_en.html and http://www.mlt-laser.de/html/hno_ambulant_en.html

It seems to be a very fine & super-accurate measure http://en.wikipedia.org/wiki/Laser_diode.

It looks like this one has been around for quite a few years overseas (but not in Australia?) See http://www.medlaser.com.tr/pdf/quadrostar/980%20article/1-980%20nm%20applications%20of%20the%20diode%20laser%20in%20otolaryngology.pdf

Interestingly the above 2002 article refers to a patient with my condition - Osler-Weber-Rendu disease (hereditary hemorrhagic telangiectasia).

This newer laser is superior than its alternatives to the conventional carbon dioxide, argon, and neodimium:yttrium-aluminum-garnet lasers.

I didn't get to use the CO2 laser - and have not heard of the n:yag laser before!

The Sydney ENT I go to is an Otolaryngologist. I have no idea what that is - let alone able to pronounce it! (I think it is a fancy name for an ENT....)

It seems that this type of laser is good because "its tissue-cutting effect is comparable to that of the [CO.sub.2] laser, its coagulation effect is comparable to that of the argon laser, and it results in a slightly higher degree of absorption by tissue than does the Nd:YAG laser."

and very interestingly... "The patient with Osler-Weber-Rendu disease had no further incidence of bleeding following surgery." !!!!

It sounds very interesting, but I found the following graphic comparing the different types of lasers including C02 to Argon.

This is a very informative site!

http://www.shorelaser.com/Medical_Lasers.html

Anyway, that's enough research for today!

Alternative Surgery

2009-02-19T18:57:00.002+11:00

In between the doctor & specialist visits, it seemed like I was not going to get into hospital quickly.

It's really frustrating how waiting lists work - but that's the system!

The first strategy my GP suggested was to end up in the emergency room when I have another episode & explain the situation & ask/demand to be transferred to the other hospital where I'm on the waiting list.

Dont like the sound of that, but I guess that's a last resort.

My GP also came up with a name of a pre-eminant ENT surgeon in town who works through St Vincents to see if he had any other ideas.

I found an email address for him & sent off a brief email explaining the current situ in a couple of lines; not really expecting anything in return & was surprised to get an email back the next day!

We exchanged a few emails - and he suggested that the argon laser treatment was now not state of the art & I should investigate another type of surgery with a fiber-optic diode laser!

Further inquiries have revealed that St Luke's Private Hospital in Potts Point has this equipment - but it sort of scares me what the cost would be with surgeons & anesthetists...

I guess that is my plan C now, after this next level of surgery I need to investigate that one.

Side Effects

2009-02-19T18:42:00.002+11:00

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

2009-02-16T23:57:00.003+11:00

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

2009-02-16T23:21:00.002+11:00

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

2009-02-16T23:14:00.002+11:00

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

2008-09-10T23:45:00.003+10:00

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

2008-09-10T23:35:00.003+10:00

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...

2008-08-06T00:00:00.003+10:00

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

2008-07-28T20:34:00.002+10:00

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

2008-07-22T00:03:00.005+10:00

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)

---------------

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

------------

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.

--------------

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

2008-07-19T21:20:00.001+10:00

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

2008-07-17T20:14:00.003+10:00

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!

CT Scans

2008-07-17T20:12:00.001+10:00

Last Thursday I had the CT scans done.

Some of them were done with an injection - I've had that before, where the machine injects the fluid into you at a critical point in the scan so the machine can pick it up & record what's happening.

I had a brain & head scan as well as a trunk scan (upper body).

I picked up the report on the weekend, but couldn't really make any sense of it as it was a bit too technical.

Visit to Sydney ENT

2008-07-17T19:50:00.002+10:00

Last Wednesday I visited the Sydney ENT. He had a nice office in ULTIMO.

I walked up from Central Station to Broadway, then down the back streets to the unit.

He had his office in a 4 story renovated warehouse. I've never been in a converted warehouse building, so it was a bit unusual for me - but ok. They've done a good job; nice professional offices.

Anyway - it was a cold blustery day - thankfully I dressed warm & it didn't rain!

I had to fill out the usual forms saying who I was & what I was there for, etc - just the usual stuff & had to wait in the room for a while - as I was early.

Then I started to bleed (just a bit) so that was annoying - as I got all the way into Sydney "ok" until that point.

Once it was my turn I had a chat with the ENT surgeon who confirmed that if I have HHT there is nothing that he can do - (cure wise) but treat the symptoms like the other ent's. However, his solution is different.

He explained about the argon laser - he described it a bit differently to how I understood it - it sends out pulses of plasma that seal the bleeding bits in the nose.

He did 2 exams - one just with the light & goggles - so he could see the bleeding area. Then one with the anesthetic. He sprayed so much that I went numb down my throat & numb down my lips - very strange for 20 minutes or so!

But to do the (deep) exam he had a knitting needle type device that went straight in. e tried my right - but that bled straight away. So I had to hold my nose to stop the bleeding; stay calm and breath calmly while he stuck most of this "probe" almost all the way in on the left.

Breathing & being calm is the secret! It doesn't hurt - you just sort of feel it moving in & around, a little discomfort, but no pain. He did the same on the other side.

he did say a couple of good things - that I dont have many spots "deep" in my nose - just one "inactive" spot right at the back & lots near the front. So he can do his wonders with me with this machine.

I was wondering whether my really bad bleeding a couple of years ago was from this now "inactive" spot at the back as myself and the doctors could not stop the bleeding in hospital - it seemed to be deep (not from the front) and very difficult to stop! (eg, 4hrs + severe bleeding without stopping!) I guess the new steps that I am taking - keeping the nose moist & the other medicines has helped.

At the end of the exam he suggested I get some CT scans done of the upper body. That's to see if there are any of the spots in other organs at the moment. I've also sent off the admission forms for Bankstown hospital. So I go onto their waiting list & assume when a free time comes up in the future, they'll call me (or I call the surgeon again if things get carried away...)

very tired

2008-07-06T14:45:00.001+10:00

I have been having the liquid iron supplement daily now, but am not feeling too well.

Very tired.

Have started to bleed a bit from my left side now. So I'm getting bleeds back on both sides.

Tomorrow I see my normal ENT in Penrith to see what she has to say, then on Wednesday I see a new ENT in Sydney about this new treatment. It will be an interesting & hopefully not too exhausting week!

IRON & blood

2008-06-29T23:53:00.004+10:00

I mentioned in the last post how important iron in the blood is - but dont really know too much about it - other than when I've lost a lot of blood I'm really sick, tired and fatigued.

The last blood test I had was fascinating, as my iron level had dropped to 1/3rd below "normal minimum" - and that was only after 4 days of severe/moderate bleeding. (About 40mins - 1.5 hour bleeds).

I know now after visiting another ENT that leaving myself to bleed this long (unassisted) is wrong. I still have to get over the "mental block" in calling an ambulance after 15-20 minutes. I think my greatest fear is bleeding to death in hospital!!!! I always tend to be left alone while they treat the "real" patients. Probably doesnt actually happen like that, but that's how you feel sometimes!!

I've found that they come quick if you bleed on the carpet - they dont like cleaning up the mess. *mental note for future visits!

Anyway, I digress....

So what foods are rich in iron?

I was told "all the green ones", but thought I'd check it out....

I found this web site: http://www.healthcastle.com/iron.shtml - but this talks about heme iron & non-heme iron. I dont know what they are!!!!!

But - it says good sources are...

Iron Rich Foods containing Heme Iron


	Excellent Sources		Good Sources

	Clams Pork Liver Oysters Chicken Liver Mussels Beef Liver		Beef Shrimp Sardines Turkey

I'm really not sure about the pork, chicken or beef livers. They dont appeal to me AT ALL!
I like beef, turkey & sardines. I guess the shrimp are prawns?

and then

Iron Rich Foods containing Non-Heme Iron


	Excellent Sources		Good Sources

	Enriched breakfast cereals Cooked beans and lentils Pumpkin seeds Blackstrap Molasses		Canned beans Baked potato with skin Enriched pasta Canned asparagus

I wonder what the difference is with canned asparagus as opposed to fresh asparagus? Pumpkin seeds surprised me - I've had them before. They are nice to much on.

Not many other green vegies there!!!!!!!!

I found a bit in the article on the heme iron - which is interesting

Absorption of iron from food is influenced by multiple factors. One important factor being the form of the iron. Heme Iron, found in animal sources, is highly available for absorption. Non-heme iron on the other hand, found in vegetable sources, is less available.

now this is a confusing one... in the same article, it says

The absorption of Non-heme iron can be improved when a source of heme iron is consumed in the same meal. In addition, the iron absorption-enhancing foods can also increase the absorption of non-heme iron. While some food items can enhance iron absorption, some can inhibit or interfere iron absorption. Avoid eating them with the iron-rich foods to maximize iron absorption.

Iron Absorption Enhancers

Iron Absorption Inhibitors

Meat/fish/poultry
Fruits: Orange, Orange Juice, cantaloupe, strawberries, grapefruit etc
Vegetables: Broccoli, brussels sprouts, tomato, tomato juice, potato, green & red peppers
White wine

Red Wine, Coffee & Tea
Vegetables: Spinach, chard, beet greens, rhubarb and sweet potato
Whole grains and bran
Soy products

Ok - I've found the vegies. Surprisingly, strawberries & grapefruit! Didn't know spinach was bad - but I dont like it anyway. Surprising is whole grains & bran - I supposed to have them to keep me 'fit & healthy on the inside' - but they are also inhibitors!!!! Tomato juice is the other surprising one!

I found another article on iron in the blood - see http://ods.od.nih.gov/factsheets/iron.asp

This has a few interesting facts as well -

Almost two-thirds of iron in the body is found in hemoglobin, the protein in red blood cells that carries oxygen to tissues. Smaller amounts of iron are found in myoglobin, a protein that helps supply oxygen to muscle, and in enzymes that assist biochemical reactions. Iron is also found in proteins that store iron for future needs and that transport iron in blood. Iron stores are regulated by intestinal iron absorption [1,8].

So that's probably why I get light headed & lethargic after a lot of bleeding.

This table is probably better put than the other one

Table 1: Selected Food Sources of Heme Iron [10]

Food	Milligrams per serving	% DV*
Chicken liver, cooked, 3½ ounces	12.8	70
Oysters, breaded and fried, 6 pieces	4.5	25
Beef, chuck, lean only, braised, 3 ounces	3.2	20
Clams, breaded, fried, ¾ cup	3.0	15
Beef, tenderloin, roasted, 3 ounces	3.0	15
Turkey, dark meat, roasted, 3½ ounces	2.3	10
Beef, eye of round, roasted, 3 ounces	2.2	10
Turkey, light meat, roasted, 3½ ounces	1.6	8
Chicken, leg, meat only, roasted, 3½ ounces	1.3	6
Tuna, fresh bluefin, cooked, dry heat, 3 ounces	1.1	6
Chicken, breast, roasted, 3 ounces	1.1	6
Halibut, cooked, dry heat, 3 ounces	0.9	6
Crab, blue crab, cooked, moist heat, 3 ounces	0.8	4
Pork, loin, broiled, 3 ounces	0.8	4
Tuna, white, canned in water, 3 ounces	0.8	4
Shrimp, mixed species, cooked, moist heat, 4 large	0.7	4

Looks like I have to make a big increase on the oyster quota!

So what happens if you are low on iron. Glad you asked - the article has a table of symptoms!

Signs of iron deficiency anemia include :
feeling tired and weak
decreased work and school performance
slow cognitive and social development during childhood
difficulty maintaining body temperature
decreased immune function, which increases susceptibility to infection
glossitis (an inflamed tongue)

That could explain why I get cold when I've lost a lot of blood! - and also get a lot of infections. Never had or thought about glossitis! Sounds horrible!

Anyway, a lot of interesting information!

Medications & Alternative Therapies

2008-06-29T21:39:00.007+10:00

I thought it interesting to describe the approach to "treatment" or management of the condition.

Of course when I bleed a lot I have to stop it as quick as I can. Unfortunately when my nose bleeds profusely, there's only two ways that the blood can come out. Of course, out the nose (forwards) or down my throat (backwards) for immediate processing (back up out the mouth) or deferred processing (well, let's just say No 2's).

Then depending on the volume & how quickly the bleeding clots, determines how much of the above happens & comes back up...

I've learned that the body has some great reflexes - that you dont need to worry about.

For example, when you are sleeping, the body wakes you up so you dont "drown" bleeding. I really appreciate that especially at 2.30 in the morning when I am fast asleep, and of course the "gag" reflex that expels the "foreign substances" from the stomach if too much blood goes down that way.

Lovely isnt it?

So, i'm adopting 2 sort of approaches in the management & prevention part.

MANAGEMENT of Active bleeds

TISSUES!!! For the management I tend to go through lots of tissues. I slow the bleeding by applying pressure to the nose - but sometimes I "choke" with the backflow of blood & have to let go & breathe & let the clots/bleeding run free... (btw, I used to like a comedy TV show 'let the blood run free' see http://www.imdb.com/title/tt0098846/ - how was I to know that later in life it would come back to haunt me in real life!!!!!!!!!!!) See also http://en.wikipedia.org/wiki/Let_The_Blood_Run_Free

Anyway, I keep a well stocked supply of tissues & boxes at home - in every room (as when I start bleeding lots, I need to 'rush' to the nearest supply....

There is also a difference in the types of tissues - I have to keep away from the scented variety (yes the Eucalyptus ones especially - see the saline section) as they do me more harm then help.

Some are 'rough' on the nose - the cheap & nasty ones.

One brand (but I cant remember which one) was too absorbent - so when I bled, the blood & clot hardened on the tissue. So when I pulled the tissue away the clot came with it starting the bleeding again. I think it was the 'rough' cheap ones that did that.

on a bad week I can go through 2-3 boxes a day (4-6 a week....) just dealing with absorbing the blood that comes out.

DRIXINE: One of the diagnosing ENT's recommended that I try drixine spray soaked cotton wool in my nose when I am having a big bleed. This is to act as a stopper and a constrictor.

However, when I have a big bleed, both hands are already being used to stop the bleed - so I've never been able to manage also trying to find the cotton wool & drixine, roll it up & put it in the nose. Too hard to manage.

Another ENT has recommended another time of blocking agent - a seaweed based gauze which looks a little like long strands of hair. It is expensive - about $15 for a small pack. It would probably be cut up into smaller pieces - but I'd have the same problem as the drixine - not enough hands available to help.

Most of the time when I have a bleed I am on my own, or with 'strangers' - so it's a bit hard to get them to help. At night, I dont want to wake anyone up, so I generally let it go... and manage it myself. I guess I can be a "burden" on them & wake them up to help, but we always seem to be so tired that I dont want to do that.

PREVENTION

SALINE SOLUTION

I've tried saline solution (to keep the nose 'sterile' & moist). Not sure whether that worked, as I found when I have my 'delicate moments' the pressure of the spray in the nostril would actually cause me to start bleeding. So I stopped using that.

I've recently resumed this as a preventative measure - but only when I'm not having bleeding episodes.

My mother-in-law recently referred me to a new FESS spray 'frequent flyer saline nasal spray'. She gave me a bottle of the tea tree one (which I understand is a good germ killer too). That was good but when it ran out I picked up a bottle of the Eucalyptus scented one. I only used it once - the smell was too overpowering & caused bleeding straight away.

Anything with a strong scent can start me bleeding. I have to be careful with things such as perfumes, strong scented hand creams; really strong smelling insect sprays & strong body BO - these all have caused me to start a bleed - even if I sit next to someone or near someone or walks by me. I have to be VERY careful. Holding my breath is no use as the scent is in the air & still irritates my nose!

VASELINE: is good - but clumpy. It keeps the inside of my nose moist & soft & keeps the crusty scabs at bay - when the tear of come away, they cause bleeding from the same spot in the nose & can cause a bigger bleed by tearing away more "area" & re-exposing the bleeding part of the nose. So it is a good preventative. Better in summer than winter as in winter is is very "clumpy" - summer it is softer. I guess the aim is like the saline solution, to keep the area soft, pliable & moist.

Coenzyme Q10: not sure what this is good for me - had a quick look on wikipedia, says that it is good for 'free radicals'; migrane headaches, cancer, blood pressure, etc. It actually says it is NOT present in the red blood cells but in other cells of the body.Grapseed 12000mg: this is primarily taken for cardiovascular health & blood circulation - and to strengthen the capillaries. Hence very important for me. The other thing they say is that the grapeseed maintains the flexibility of the skin & collagen - therefore the blood vessels remain "pliable".

Crampeze: I dont know whether leg cramps is a side effect of the condition or blood loss. But at times I go through severe leg cramps in my sleep. So I am trying this product (when needed). It seems to have Rutin (?) Citrus Bioflavonoids, magnesium & Vitamin B6 in it. I started this for a few weeks when I had bad bleeding last & leg cramps & it appeared to make the 'attacks' less pronounced & eliminated them. So it seems to have done it's job.

I've heard about the flavonoids before - Flavonoids have been referred to as "nature's biological response modifiers" because of strong experimental evidence of their inherent ability to modify the body's reaction to allergens, viruses, and carcinogens. They show anti-allergic, anti-inflammatory^[4] , anti-microbial and anti-cancer activity.

see wiki http://en.wikipedia.org/wiki/Bioflavonoids

Now for the "hard" stuff...

In order to keep the blood pressure under check I'm taking Atacand 32mg (candesatan cilexetil). The lower doses didnt seem to do anything this higher does was going ok until the last bleeding episode where I was clocked at 170/120...

So I'm supplementing that with Zanidip 10mg - I have 1 of these in the morning (atacand before I go to bed). I think, but maybe it's just me - that the atacand make me a little tired, so I find it better to take them at night.

The best stuff is the chloromycetin - eye ointment. I think this is the best stuff, an antibiotic type cream/paste that seems to be really good at "smoothing" & moistening inside my nose. I know that I always get a tube of that when I go to hospital & try to make it last as it is so good!

I dont like the metal tube one - the plastic tube one is so much better. (Remember the old tin-style toothpaste tubes where you couldnt get the last bit out? Same thing here).

Asthma Medication

This is an interesting one - last year I got very ill - probably pneumonia, combined with a fever; bleeding, vomiting & shortness of breath all at the same time. Made for an interesting hospital visit. One of the complexities of this issue is that you can have shortness of breath etc associated with I assume these "telangiectasias" in the lungs, etc. No evidence of that - but I do get the shortness of breath.

I take a preventer - Symbicort, and scale up the dosage when I need to; supplemented with a ventalin. This year this combination seems to have worked. Last year I went on a steroid based medicine a couple of times & that seemed to fix the problem immediately. I think the symbicort has the steroid agent in it.

Cyklokapron - Tranexamic Acid - see wiki http://en.wikipedia.org/wiki/Cyklokapron
This is the 'experimental' drug that I'm on. I find that it makes me quite ill as I have been taking it since November last year 1/day preventative, 2/day when the bleeding is happening. So I find that I am having 2/day most of the time now. Up until a month ago, I had been regularly taking it - then I stopped as I was fed up with being sick (nauseous) all the time. Then about 2 weeks later then bleeding came back with a vengeance. I dont know whether it was a total co-incidence or a sign that it actually was working - but I'm back on it again (and dont feel so sick anymore).

Wiki says is is often prescribed for excessive bleeding (particularly of the menstrual type). I got the 'third degree' the first couple of times from the pharmacists filling the order as to whether the doctors knew what they were doing... actually I got that too with the chloromycetin - "but it's meant for the nose.. not the eye".. and "your a bloke - not a woman" - derr. But it's worth a laugh!!

I have also learned to ask a lot more questions - both of the doctors & the chemists to make sure there's no contraindications. As I am taking quite a bit to get me back on track. It also helps to educate others on what these things are for. It's good for everyone I guess.

Wiki also says it is good for Haemophilia. I dont have that but when people see me bleeding that's what they think it is. Haemophilia is a blood disorder. I have a bleeding disorder (subtle difference?) HHT is a defect on the way the blood vessels form. Not on the "physics" of the blood. My blood looks great (apparently) under a microscope - it clots fine. It's just the blood vessels are not right which cause the blood to come out. It clots fine - it's just that when it gushes so fast it cant clot fast enough!!!! I think with Haemophilia, the main problem is not the "size" of the bleed but the "thickness" of the blood & it's ability to clot.

I think I may have mentioned in a previous post that one visit to the hospital the intern wanted to give me "the" needle (cant remember what that was) - to make my blood clot without doing the tests first. That would have been a deadly mistake as you cant give clotting agents to a person with normal blood. Thankfully he didnt give me that needle - but not through want of trying!!!!!!!!!!! (This was one time when I DID exert myself!!)

Interestingly, WIKI reports that Hemophilia A occurs in about 1 in 5,000–10,000 male births. I think the odds of HHT are about the same - depending on which resource you refer to! It looks like that hemophilia is caused by a lack of a factor in the blood. (my factors are fine). The genetics & hereditary of this is also different to HHT. Similar to HHT, there is no cure for hemophilia (YET!)

It is interesting in that some of the herbal treatments suggested for hemophilia are similar to hht, being Bilberry(Vaccinium myrtillus), Grape seed extract (Vitis vinifera), Scotch broom (Cytisus scoparius), Stinging nettle (Urtica dioica), Witch hazel (Hamamelis virginiana), and yarrow (Achillea millefolium).

I'll have to look into some of those one day.

The other thing I take in nexium 40mg. That is supposed to relieve the "sick" feeling. I dont think they are very effective as I still get queasy. These are also to stop reflux.

I did a sleep function (?) test last year at a private Hospital in ORANGE, NSW. That was a nice visit. The tests showed that I do have disturbed sleep - & breathing, but dont recommend anything as the bleeding issue is more of a concern. Wearing a mask at night could be very messy if I had a big bleed. The specialist said the machine could spray the blood everywhere; as well as drying out the nose. So not a good thing.

I also take some "special" supplements from my biochemist / naturopath. Having the acid medication was making me sick - he did some tests and found my stomach was acidic. I guess pretty obvious! He made up a simply wonderful mixture - a white powder which fizzes in certain drinks... I guess it must be pretty alkaline. took some - that day, not more sick feeling. Smart guy!!

I also take a metamucil like substance (when I remember). It is interesting because the way the biochemist understands the scheme of things is that the bleeding is linked to the GI (gastro-intestinal) system - so if it is under strain, it can effect things like blood pressure & bleeding etc etc. His interesting comparison is that if going to the toilet is "a strain" then that can put pressure on the GI system & promote bleeding. (The other little delightful circumstance is that if you 'consume' a lot of blood when you bleed it upsets your tummy & the No2's too...) so this stuff helps "soften and smooth" the output flow - if you know what I mean!!!!!!!

I also take a stong dose of VitC - much higher than you would normally take to try to fortify my system.

SO .. all this stuff is meant to help my body cope with what I am going through,.

I've saved the best one to last.

i've learnt that the biggest impact on my body from the bleeding (apart from the chronic fatigue & lethargy) is the effect on the blood - and therefore the rest of the body.

It seems that when I bleed the ferrin (iron) levels drop. The more I bleed the greater the drop.

Therefore it is critical that I replace the blood / iron quickly - so drinking a lot of "healthy" liquids is important - water & juice & eating green vegies.

The best thing I take is Clements Iron (an iron enriched dietary supplement - balance with vitamins & minerals. I've tried iron tablets, but they "dry me out" too much & take too long to work. So I take this iron mix in some orange juice, and that helps heaps. Boosts me up within a few hours & a really notice a difference.

So I've talked a bit about what I do before bleeding (preventative); during bleeding & after bleeding (post care).

Hope this info helps!!!!!!!!!!! It has been a long ride experimenting with what works & what doesn't. I think the most important thing to keep in mind is that you have to do what's best for your particular circumstance.

The most important thing I've learned is that depending on which part of the "bleeding" cycle I'm in - I actually have to apply different treatment (ie, scale up some things & scale back others); use different things in different proportions, etc.

So it's not one rule suits all! Even once I think I have this worked out - it's not - as I have to be flexible to suit where I am at.

This is also true for my work life now. Sometimes I dont have the energy to work - and so tired; so I have to scale back. Other times I am full of energy and stay up late (like now).

The other weird thing is that the "cycle" of bleeding & energy is different - and can be sometimes very short & other times very long.

For example - yesterday I was in a "bad way" for most of the day. Did not feel too good all day, but forced myself out & about (which is good) - but really really needed rest (not to feel sick, sore & sorry for myself - just felt physically tired).

Today - I woke up totally refreshed, had my first unbroken sleep in weeks & really got a lot achieved today. At other times the gap between feeling good and bad can be 3 to 4 weeks!

I really dont understand & really cannot work that one out!

BYE!!!!!!!!

btw, images

2008-06-29T21:24:00.002+10:00

Oh, I stumbled across a site with some interesting x-ray & cat-scan images of organs with the Hereditary hemorrhagic telangiectasia defect.

One day I'll have to come back & look at them in more detail & see if I can cross-match to any of my past (or future!) x-rays.

http://www.ajronline.org/cgi/content/full/183/2/307

Saturday was a rough day

2008-06-29T20:55:00.002+10:00

.. but Sunday was better

Saturday did not start well for me - went to bed bleeding; woke up first thing bleeding; about 10:30 bleeding about 2:30 bleeding... a very exhausting day.

i had a good sleep Saturday night - felt completely rested when I woke up.

Got onto the iron tonic so feeling quite energised today!

Had a good time at Church. Has been a bit sad lately with a few things happening there.

Dropped a friend home & visited with a few people in the afternoon.

That was great. Dropped in on a friend's almost completed house! Looking good..

HHT - Basic Article

2008-06-19T00:14:00.001+10:00

This article seems easy to understand...

http://ghr.nlm.nih.gov/condition=hereditaryhemorrhagictelangiectasia

What is hereditary hemorrhagic telangiectasia?

Hereditary hemorrhagic telangiectasia is a disorder that results in the development of multiple abnormalities in the blood vessels.

In the circulatory system, blood carrying oxygen from the lungs is normally pumped by the heart into the arteries at high pressure. The pressure allows the blood to make its way through the arteries to the smaller vessels (arterioles and capillaries) that supply oxygen to the body's tissues. By the time blood reaches the capillaries, the pressure is much lower. The blood then proceeds from the capillaries into veins, through which it eventually returns to the heart.

In hereditary hemorrhagic telangiectasia, some arterial vessels flow directly into veins rather than into the capillaries. These abnormalities are called arteriovenous malformations. When they occur in vessels near the surface of the skin, where they are visible as red markings, they are known as telangiectases (the singular is telangiectasia).

Without the normal buffer of the capillaries, the blood moves from the arteries at high pressure into the thinner walled, less elastic veins. The extra pressure tends to strain and enlarge these blood vessels, and may result in compression or irritation of adjacent tissues and frequent episodes of severe bleeding (hemorrhage). Nosebleeds are very common in people with hereditary hemorrhagic telangiectasia, and more serious problems may arise from hemorrhages in the brain, liver, lungs, or other organs.

HHT in Wikipedia

2008-06-18T23:32:00.002+10:00

I found even Wikipedia has some articles on it.

see wikipedia (http://en.wikipedia.org/wiki/Hereditary_hemorrhagic_telangiectasia)

This one talks a bit about the genetics of it, and goes through the autosomal dominant part of the genetics.

I wonder if this makes sense to anyone:

Autosomal dominant gene

An autosomal dominant gene is one that occurs on an autosomal (non-sex determining) chromosome. As it is dominant, the phenotype it gives will be expressed even if the gene is heterozygous. This contrasts with recessive homozygous to be expressed.

The chances of an autosomal dominant disorder being inherited are 50% if one parent is heterozygous for the mutant gene and the other is homozygous for the normal, or 'wild-type', gene. This is because the offspring will always inherit a normal gene from the parent carrying the wild-type genes, and will have a 50% chance of inheriting the mutant gene from the other parent. If the mutant gene is inherited, the offspring will be heterozygous for the mutant gene, and will suffer from the disorder. If the parent with the disorder is homozygous for the gene, the offspring produced from mating with an unaffected parent will always have the disorder. See Mendelian inheritance.
The term vertical transmission refers to the concept that autosomal dominant disorders are inherited through generations. This is obvious when you examine the pedigree chart of a family for a particular trait. Because males and females are equally affected, they are equally likely to have affected children.
Although the mutated gene should be present in successive generations in which there are more than one or two offspring, it may appear that a generation is skipped if there is reduced penetrance.

Autosomal Dominant Pedigree Chart

! I never knew I could paste graphics into a blog - see you learn something new every day!!!

This is an interesting chart from wikipedia - it shows anyone with the "half" a gene has it.

It is also very interesting that they are only just starting to identify the chromosomes that it affects - Four forms have been described.

The wikipedia article in interesting - it quotes a different rate of occurance:-

Epidemiology
HHT occurs mainly in whites (1:5,000), more in certain areas of France, but much less in blacks (1 in 1 million). It is found in all continents throughout the world. It is also seen with increased frequency in Mormon families from Utah.

Interesting.........

HHT Complex article

2008-06-18T23:23:00.002+10:00

I found a complicated article at http://www.emedicine.com/derm/topic782.htm on the net. Some bits in the article are interesting.

HHT is a disorder that is inherited in an autosomal dominant fashion, although 20% of patients are unaware of a positive family history, partly because the lesions may be minimal and because 10% of patients have no episodes of bleeding. The homozygous condition probably is fatal. Histopathologic studies reveal large, irregular, thinly walled blood vessels, but the pathogenesis has not been fully established. One current theory states that systemic nevus vascular damage may not be equally expressed in all individuals with HHT. Individuals with blood group type O are affected more often, whereas males and females are affected equally. Coagulation abnormalities and increased fibrinolytic activity in the lesions may contribute to the tendency for bleeding.

I still have to work out what autosomal dominant is - but I think that it means roughly it's more than likely to carry through in the genes

It is really interesting - I recently had my blood group confirmed - just for interest - and its O+

United States

HHT is rare. Prevalence is 1-2 cases per 100,000 population.

Ok, so I'm not 1 in a million - but 1:100,000 is "special" !!

I read somewhere a while ago that this condition is more prevalent in Scandinavian (viking) heritage. Does that mean I have some viking in my family history?!

International

The onsets, courses of illness, and sex distributions are the same worldwide. The condition is much more common on the Danish island of Fyn, in the Dutch Antilles, and in parts of France.

I wonder what is "special" about these ethnic groups?

Update 18/6/08

2008-06-18T22:01:00.002+10:00

I have continued to have "big" bleeds at night, and a couple of small ones during the day.

this evening, feeling heaps better as I started on the iron tonic yesterday.

I find that really helpful when I've ha a lot of bleeding.

The thing I detest most was what happened last night - a largish 20 minute bleed every 2 hours or so... while I am asleep. I really dislike (in the most strongest sense of the word!) being woken up choking & bleeding. 2am, 4am & 5.30am. Never really got a good stint of sleep.

I think it is full moon at the moment - or near enough to it. Wonder if that has anything to do with it!!!!!!!

Who knows.

Update 16/6

2008-06-16T12:21:00.002+10:00

Feeling very tired today.

Got my last few blood tests back. The thyroid function is back to normal (for now).

My blood count is good - but the iron levels are 1/3rd below minimum.

Have to get back onto the iron supplements to try to build up from the blood I lost last week. It's interesting how the body works. My doctor said I did into the iron stores first, then into the red cells second ... which then causes anemia. So I'm just a fraction away from that.

My BP is down from last weeks record (now 150/90) but that's still too high. The bleeding has been less - not so long now, which is good. Much happier with that, but still annoying when it happens.

I go into the city on 9/7 to see another ENT specialist.

HHT On House

2008-06-16T01:23:00.003+10:00

I finally found the links - but missed the episode when it aired, when HHT featured on HOUSE (tv show, on TEN in Australia).

Season 3, ep 16 http://www.housemd-guide.com/season3/316secret.php
&

http://www.televisionwithoutpity.com/show/house/top_secret.php?page=13

The patient of the week

Ex-marine who thinks he has gulf war syndrome because he has unexplained fatigue, rashes and joint pain. This patient turns up in a dream House has before the patient is given him even though House has no memory of ever having seen him before.

The mis-diagnoses

Some of the things they suspect, test for or try to treat include, autoimmune diseases, lymphoma, tumors in the brain, infections,

The final diagnosis

Hereditary Hemorrhagic Telangiectasia, a genetic disease that destroys the patients capillaries. The problems caused by this can be fixed with a few surgeries

UK web Site - HHT

2008-06-16T01:11:00.001+10:00

I found the following web site, out of interest...

http://www.hht.me.uk/

click on the DISCUSSION section for interesting chit chat

Web Site - HHT

2008-06-16T00:41:00.003+10:00

I became a member of the HHT Foundation in the states.

They have a number of really useful pages (for me).

I've exchange a few emails with them too when things got tough & they came back with some really good advice. So I really appreciate their input too!

http://www.hht.org/living-with-hht/

This was a short extract about what it is...

Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder of the blood vessels, which affects approximately 1 in 5,000 people. It affects males and females from all racial and ethnic groups. The disorder is also sometimes referred to as Osler-Weber-Rendu (OWR) after several doctors who studied HHT about 100 years ago. In 1896 Dr. Rendu first described HHT as a hereditary disorder involving nosebleeds and characteristic red spots that was distinctly different from hemophilia. Before Dr. Rendu’s work, doctors did not understand that individuals with what we now call HHT have abnormalities of their blood vessels, not a clotting problem in the blood itself. Drs. Weber and Osler reported on additional features of HHT in the early 1900s. More than a hundred years later, HHT is still often misdiagnosed in affected individuals and many doctors do not understand all of its manifestations.

http://www.hht.org/about-hht/

What is HHT?

HHT is a genetic disorder that causes abnormalities of blood vessels. Most blood vessels in the body of someone with HHT are normal. However, a small percentage of the blood vessels in a person with HHT have a specific type of abnormality.

Blood vessels are the tubes that carry blood around our bodies. There are two types of blood vessels: arteries and veins. Arteries carry blood under high pressure out to all areas of the body after being pumped by the heart. Veins carry blood that should be under low pressure, back to the heart. An artery does not usually connect directly to a vein. Usually there are very small blood vessels called capillaries that connect an artery to a vein.

A person with HHT has a tendency to form blood vessels that lack the capillaries between an artery and vein. This means that arterial blood under high pressure flows directly into a vein without first having to squeeze through the very small capillaries. This place where an artery is connected directly to a vein tends to be a fragile site that can rupture and result in bleeding. We usually call a blood vessel that is abnormal in this way a telangiectasia (tel-AN-jee-eck-TAZE-ee-ya), if it involves small blood vessels. We tend to call it an arteriovenous malformation (AVM) if involves larger blood vessels. So, an AVM might be thought of as a big telangiectasia. The basic abnormality in the blood vessel is the same.

Telangiectases tend to occur at the surface of the body such as the skin and the mucous membrane that lines the nose. AVMs tend to occur in the internal organs of the body. The telangiectases (plural for telangiectasia) and AVMs of HHT occur primarily in the nose, skin of the face, hands, and mouth and the lining of the stomach and intestines (GI tract), lungs, liver and brain. It is not currently known why these abnormal blood vessels tend to occur in certain parts of the body and not others.

some links: laser therapy

2008-06-16T00:29:00.002+10:00

I found a couple of links about the argon & c02 lasers. They are used it seems in dermatology & cancer treatment which is good.

http://dermnetnz.org/procedures/lasers.html

The above article says ...

Vascular lesions

Lasers have been used successfully to treat a variety of vascular lesions including superficial vascular malformations (port-wine stains), facial telangiectases, haemangiomas, pyogenic granulomas, Kaposi sarcoma and poikiloderma of Civatte. Lasers that have been used to treat these conditions include argon, APTD, KTP, krypton, copper vapour, copper bromide, pulsed dye lasers and Nd:YAG. Argon (CW) causes a high degree of non-specific thermal injury and scarring and is now largely replaced by yellow-light quasi-CW and pulsed laser therapies.

so that seems to be appropriate for the telangiectases that I have...

I had been prep'd once before when I had treatment in Westmead Private Hospital & thought it was quite funny when they prepared my body with wet towels & the like to minimise the risk of flamability when the laser was in use.... Maybe I imagined it - but this article reminded me of that! (refer "laser safety section"!!!)

The other articles are also interesting, btw.

http://www.massey.vcu.edu/cancer/?pid=1532

http://cancer.stanford.edu/information/cancerTreatment/methods/laser/

Friday the 13th

2008-06-16T00:04:00.002+10:00

Ahh. there must have been something in the date!

I woke up & was not feeling very well at all. Actually, Karen had to wake me up as I had another bad night with bleeding.

I had a visit today from a client who strongly encouraged me to see the doctor.

I couldnt get into my normal doctor or the specialist (who is away for 3 or 4 weeks at the moment) so we chose a new doctor in Penrith.

She seemed quite nice.

I've also had a little bit of bleeding from 2 new external spots which is interesting - one on my arm (but that seems to have gone now) and one from a spot under a small mole on my side. That one will need to be followed up urgently.

After reviewing my medical history (shortened condensed version..) she took my blood pressure & wanted to know what was really going on.

It was sky high

I've never been to a doctor (never been able to get in to see a doctor) so close to a big bleed & the blood pressure was way up. I've never had a reading that high before! (170/120).

The doctor contacted another ENT who fit me in straight away.

That was really good. I'm always reluctant to go to the doctors & specialists as you are always seeming to spend so much money & get back so little from medicare and the health funds....

That was a good appointment, as I had visited him some 12 years earlier also with a nose bleeding problem. Except we didnt know that it was a problem back then - just a one-off.

So it is interesting to start to get a timeline of events - I hadn't realised it was a problem for me back in 1996. I think from memory it would have just been a couple of really bad bleeds at the time; nothing to worry about anyway.

It was good though as the specialist wanted to know what he'd missed back then as compared with the condition now, which of course was much more severe. So I really appreciated that.

Come to think of it, the above happened on the Thursday (not the Friday). my memory must be going too!

Friday I felt very off - very low on the energy quota & quite pale.

The ENT gave me a couple of different ways of managing the severe bleeds which was really a good thing.

He also arranged for a referral to an ENT who works out of St Vincents Private Hospital in Sydney. I;m not too keen about the travel; but if it is a solution, it is worth looking into.

I think its called argon laser therapy - apparently much better than C02 and the general electrocautery that I have done under a general anesthetic.

I think the appointment is in about 3 weeks; so that's not such a long wait.

We had a discussion about emergency treatment. One thing the specialist had said (or scolded me?) is that instead of waiting 1+ hours to seek treatment, I have to reduce the window down to 20 minutes. Up to now I've been "managing" the condition between an upper & lower parameter - so I dont bother anyone unless I go outside the parameters... Recently I've felt that I have not been coping with the blood loss too well, so I guess this is a good thing to narow the time down significantly before seeking treatment.

I guess I am paranoid about calling an ambulance - but the last few times they have been absolutely wonderful. It's when you get to hospital that things seem to be left wanting....

My local hospital is Nepean. But after discussion with the ENT he suggested (strongly) that if I need to make it to a hospital Westmead would be the better option as they have ENT surgeons after hours; where I dont think Nepean does. Based on my past experience there, I think that is correct.

What I'm getting from the discussion is that I have to seek treatment earlier so I can bounce back quicker - by leaving it until I'm really sick, that's not a good thing.

So it's good to keep things (or get things) back into perspective.

This weekend I went to the shops for some groceries. That was a mistake as I was absolutely exhausted for the rest of the day. Maybe a bit to optimistic.

I slept most of today & also took it very easy (Sunday).

Tomorrow I go off to my normal doctor & hope to have a good discussion on where I am at.

I had a blood test a couple of weeks ago as the thyroid function was low (?) - probably as a result of the bleeding.

The ENT recommended a further series of tests on Friday to see how my body was coping with the bleeding, so the results should also be back tomorrow.

I get so use to the blood tests, they dont really worry me any more. However, Friday's test I went sweaty & feint. I guess that was telling me too that I have lost a lot of blood in the last week. Sometimes I need something like that to poke me (literally) to know I need to slow down.

Queens Birthday Weekend

2008-06-16T00:00:00.002+10:00

I've had a good 6 week period now without much bleeding.

About 2 weeks ago I felt like I had a slight cold or flu. Nothing much to worry me.

Then on the long weekend I was "struck down" with a sever bout of chronic fatigue & tiredness. I slept most of the weekend away.

On Queens birthday Monday - about 3am in the morning, I was woken up with the severe bleeding again. Not nice. I think I detest that the most - especially when I was having a sound sleep.

Unfortunately the bleeding carried on into the following days - Tuesday, Wed & Thurs as well - all early morning & big (> 40 mins - 1.5 hours).

You get used to it after a while...

Sunny Day

2008-04-26T10:35:00.002+10:00

Today is the first sunny day that we have had in weeks!

It's great to see the sun...

Blogged with the Flock Browser

Hail Storm 13-1-2008

2008-01-13T16:28:00.001+11:00

Hail Storm 13-1-2008
Originally uploaded by rbca

Big hail storm > 25mm of rain & 100km wind

Hail Storm 13-1-2008

2008-01-13T16:27:00.003+11:00

Hail Storm 13-1-2008
Originally uploaded by rbca

Big hail storm > 25mm of rain & 100km wind

Hail Storm 13-1-2008

2008-01-13T16:27:00.001+11:00

Hail Storm 13-1-2008
Originally uploaded by rbca

Big hail storm > 25mm of rain & 100km wind

Flickr

2008-01-13T16:26:00.001+11:00

This is a test post from , a fancy photo sharing thing.

msn web space

2006-01-22T20:27:00.001+11:00

Apparently I also have some msn webspace

http://spaces.msn.com/members/RBCA

I have to spend some time & work that one out...

So I'll reference it here so I don't forget that I have it!

30/6/08 - I think blogger is better, easier to use - but spaces has a nice feel about it

Hello

2006-01-22T19:51:00.000+11:00

Welcome to Raymond Brooks's blog.

Raymond Brooks

Blood Type O+

anemia

What is HHT

fiber-optic diode laser

Alternative Surgery

Side Effects

ENT Visits

My Last Trip to Hospital

Update on Bleeding

Waiting Lists

It's been over a month now

Visit from the boys in blue...

Updated Pathology Results

Initial results from Ultrascan

Ultrasound

Doctor's Visit

CT Scans

Visit to Sydney ENT

very tired

IRON & blood

Iron Rich Foods containing Heme Iron

Iron Rich Foods containing Non-Heme Iron

Iron Absorption Enhancers

Iron Absorption Inhibitors

Medications & Alternative Therapies

btw, images

Saturday was a rough day

HHT - Basic Article

What is hereditary hemorrhagic telangiectasia?

HHT in Wikipedia

Autosomal dominant gene

Epidemiology

HHT Complex article

United States

International

Update 18/6/08

Update 16/6

HHT On House

UK web Site - HHT

Web Site - HHT

some links: laser therapy

Vascular lesions

Friday the 13th

Queens Birthday Weekend

Sunny Day

Hail Storm 13-1-2008

Hail Storm 13-1-2008

Hail Storm 13-1-2008

Flickr

msn web space

Hello