Blood Type O+

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

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

... 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:

1. Nosebleeds(epistaxis): spontaneous and recurrent
2. Telangiectases: multiple, at characteristic sites, including face, lips, oral cavity and fingers
3. Visceral AVM (pulmonary, cerebral, hepatic, spinal) or gastrointestinal telangiectases (with or without bleeding)
4. 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

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

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

This week has been a bit of a strange week.

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

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

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

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

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

The side effects this time concerned me a bit.

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

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

Then the severe headaches came back.

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

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

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

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

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

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

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

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

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

ENT Visits

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

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

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

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

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

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

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

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

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

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

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

I know now.

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

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

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