IRON & blood

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

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

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

.. 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

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

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 recessivehomozygous 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

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

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

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

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

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

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

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

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

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...