Possible Bad News

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Possible Bad News

Postby R30 » Fri Aug 06, 2004 2:20 pm

Dear all
Just a note to let you all know that I may be expecting some bad news in the next few days. I am due to have a live transplant in September (thanks mum!); however for some time now I have been developing bruises on my body - and not just small bruises. These are large and very noticeable. I have mentioned it to my hospital team several times, but no one seems to have taken any notice. Last Monday I went to see my Consultant to show him the latest batch of bruises and this time he took me seriously. He asked me for a blood test to check for clotting serum and informed me that he would discuss my case with the haematology department. Yesterday I received a note in the post requesting an urgent blood test. On the blood forms it stated that they are investigating the possibility of me having some form of haemophilia (I thought only men got this - apparently this isn't the case.) This, essentially, would prevent me from ever having a transplant.
Obviously I am floored by this, and rather concerned. If anyone can give me any further information on Von Willibrand's disease, or deficiency of Factor 13 I'd be very grateful. Or if anyone knows anyone else who may have either of these, and can give me some indication of the treatment they, or anyone else may have received for these, I'd be very grateful for the information.
Many thanks - and let's hope it's not bad news.
Ruth
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Postby wing » Fri Aug 06, 2004 2:32 pm

Hi R30.
Sorry to hear of your pending bad news.
Don't know much about this condition myself but if you log on to:
www.netdoctor.co.uk and type in,
thrombotic thrombocytopaenic purpura (sorry!!), you will find some information there.
Good luck with it all.
wing
 
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Postby Mike » Fri Aug 06, 2004 2:48 pm

Hi
I'm so sorry to hear that, you must be devastated and very worried. I'm sorry I know nothing about this disorder but I hope everything turns out ok for you.
mike
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Postby Rachel in NY » Fri Aug 06, 2004 3:19 pm

Hi Ruth,

I'm so sorry to hear your news. I'm sure what's worrying you more is the "not knowing" and in between part. I sincerely hope that when all is said & done, you DON'T have this disease, and the bruising is just from anemia of something of the sort.

But - here is a website for you to look at-

http://www.allaboutbleeding.com/

It discusses this Von Willibrand's thing in depth. Even if it ends up that you DO have it.. I don't know if surgery is impossible persay. There are 'pre-treatments' they can do beforehand. My grandfather has a bleeding disorder as well. Every procedure that can cause bleeding is a potential risk to him, bc the bleeding doesn't stop. But he usually gets heavily boosted a few days before any potential thing, and they go okay.

I myself am a bleeder - but no specific disease... They just pay extra attention and take extra care to ensure disaster stuff.

Anyway, do let us know what happens.. and I hope all works out. Don't loose hope yet!

~Rachel
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Postby Sueleic » Fri Aug 06, 2004 6:28 pm

Hi Ruth
Here’s hoping it’s not bad news for you
I will be thinking of you
Like others I don’t know anything about this disease
Keep us posted as know doubt you will
Take care
Sue
Xxx
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Bruising

Postby Cheryl in CT » Tue Aug 10, 2004 2:04 pm

Dear Ruth-

Have you had any further news about the bruising? I really do hope it's nothing too serious and that it does NOT have to postpone your transplant.

I had severe bruising, too, pre-transplant. Mine turned out NOT to be any sort of disease or deficiency other than IRON (anemia). For a while there, I was ALWAYS covered with bruises, and tho they started out small (like thumbprints) eventually they appeared everywhere, getting larger & darker as the weeks went by. Meanwhile, I also had the horrendous itchiness that renal patients often experience, and everywhere I scratched at all, more burises would form. It was pretty disgusting, actually.

Once, when Mark and I went together to our small local hospital (not the transplant hospital) for some testing, we were actually separated and questioned individually about the possibility that I was a victim of spousal abuse! (This had happened once before at a different hospital, years ago, when I had fainted during a pregnancy & smashed up my face pretty badly, so at least it didn't come as a complete shock...)

In any case, I eventually had to have so many iron injections and weekly iron infusions (plus Epo, three times a week) that I thought I was going to start to RUST. The bruising never went away completely, but it did lessen considerably. Even now, more than a year & a half post-transplant, I tend to bruise more easily than I ever used to way-back-when, but at least now I can usually point to SOMETHING (such as the edge of my desk!) to explain where a particular bruise may have started.

Ruth, I do hope that your bruising turns out to be no more "serious" than mine, and that your transplant can go ahead, on schedule, next month.

I'm thinking of you!

all the best,
Cheryl
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Possible Bad News...

Postby R30 » Tue Aug 10, 2004 3:07 pm

Thanks to everyone who has responded to my posting at the weekend. I went back to hospital yesterday and found out that my platelet count is normal, as is my clotting time. However, the clotting process is a myriad of different chemical processes and any one of these can be deficient so I will have to wait for my other results for a couple of weeks (apparently haematology do lots of different tests on my blood to establish which chemical process has mutated/is deficient.)
Really hoping that they don't tell me I have this type of haemophilia (deficient factor 13 - very rare). Apparently there is no treatment for this, other than palliative transfusions during bleeding episodes. Anyway, I am trying to be pragmatic about this and looking forward to my operation rather than concentrating on all the things that could go wrong in the meatime - difficult to maintain this sometimes.
Many thanks to you all. I will let you all know what happens - and hopefully breathe a sigh of relief. If anyone fancies a virtual pint (in cyberspace) if I get good news - let me know.....! :lol:
Ruth
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Postby JMan » Wed Aug 11, 2004 7:36 am

I'd be very surprised if you did have it.. as Cheryl and others have pointed out bruising in renal patients is fairly common for a number of possible reasons including.

Anemia
Low ferritin (iron) levels
Side effects from drugs such as aprin, prednisolone, and azathioprine

These and combinations of others can cause problems with bruising.

I tend to bruise easily (from my medication) my hospital don't bat an eyelid at this as its pretty 'normal' (doesn't make me feel any better but there ya go!!:))
"Dialysis! What is this? The dark ages!"
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Thanks!

Postby R30 » Wed Aug 11, 2004 7:58 am

Hi JMan
Thanks for your response. The reason they are concerned is because my right upper arm and some of my back went black so it's not just a case of bruising easily. This was severe bruising overnight. I too have always bruised fairly easily and certainly more so since I commenced dialysis, but this was something else.
The hospital are also concerned at other symptoms I've had (recently when having blood taken, my arm continues to bleed profusely and has resulted in raised bruises). Obviously they are taking precautions before my operation to rule out any possibility that things could go wrong; however, I am hoping that the tests are negative.
Keep hoping with me!
Ruth
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