Tuesday, 11 September 2012

Surprise, Surprise....

.... it was the diagnosis we thought it would be in the first place, which was that we wouldn't be able to give you a diagnosis.

Saying that though, everyone at the Clotting Clinic at the UBHT has been fab. They have pushed things on and squeezed us in to get the job done. They've very patiently accepted our phone calls and listened to all of our concerns and we couldn't asked more of them.

In the end, we got the conclusion that everyone had speculated over from the beginning. Yes, Mr Creeps does have some type of bleeding disorder, but no, they don't know what's causing it. It's most likely to either be a version of von Willebrand Disease, or, something similar, but they can give a definite answer. They will recommend that prior to surgery he is given certain medicines that will cover those eventualities, but cannot guarantee their success.

It may sound odd that they can't give a definite answer. Shewhowillnotbenamedunlessshewishestobe said earlier 'But how can blood be inconclusive? It's just blood'. It's a good question, but the truth of it is, blood isn't just blood. It's an amazing substance that from a scientific view they're still learning new and awesome things about as the years go by. Mr Creeps has had just about every test that is available to them at the moment and they still cannot say 'yes, it's definitely 'x'.'. That would put him with 50% of all patients sent to haematology wards with 'unexplained bleeding' in the world. There are some many factors to do with medication, diet, lifestyle - even the air we breathe, that can affect the outcome of these blood tests.

So what is 'just blood'? Blood is the oxygen supply, hydration supply, and food supply to your whole body. It carries, proteins, hormones, and antibodies to all the places they need to go. You can loose up to 3 pints of blood and your body can go on and make more (though you might not be up to much else in that time). They can actually take your blood an give it someone else with the same blood type to help save their lives. Women grow babies by supplying them with their own blood.

On the other hand, blood can be a killer. It can carry Aids, HiV, Hepatitis, and many other diseases. It can have things missing from it so that you can't stop bleeding, or it can't supply your body properly with the right things. It can become diseased itself - carrying cancer to other organs in your body.

Anyway, the haematology guys are writing (don't even get me started on that) to the lovely Mr Saunders with their findings and recommendations. Even though all of the testing may seem as it was done for nothing, actually, it's going to do lot for us. Aside from recommending the medicines, they are also going to recommend an extended time for obs, and that all info is fed back to them. They are also issuing us and our GP with a letter outlining in detail the tests that they have done and stating that anyone needing to do invasive surgery on Mr Creeps had better call them for instructions first. They really are taking us seriously, but can only work in the parameters they have and are not prepared to give guarantees when they are not 100% sure on something.

So, 10 working days to get the letter to Mr Saunders, then hopefully a conversation and we should be able to get re-booked back in again sometime before Christmas.

I had a bit of a wibble later on this morning as the whole weight of everything we have to do became very apparent (I'm normally very good at just not looking at the view). However everything, while still terrifying, will not be improved by me going to pieces, so I have just had to pick myself up by the scruff of the neck and give myself a good talking to and we're okay now.

Tomorrow is another busy day, so I best away to bed. :)

1 comment:

  1. What a worrying time it must be for you :( And I think I know what you're inferring to with the doctors writing to each other... we're in a similar situation with my son. Almost 3 years old and still not sure whats wrong with him! Hugs, hope you get some answers soon x