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I'm home ....... for 2 days
Got the phone call Monday which asked me to come down to Addenbroke's (Cambridge hospital) for observations and to prepare for kidney biopsy on Tuesday. I was then due to return home Wednesday.
Well I actually made it home just after midnight Friday night/Saturday morning, but only for the weekend. I didn't even get the biopsy as it was too risky, but did get news that I almost certainly have another condition/illness to add to my list (possibly Glanzmann Thrombasthenia).20150805_121546.jpg The bruise that you can see on my arm is from one pin-prick vaccine. It has travelled a far down as my wrist.
Obviously which such bruising from a single shot, biopsies are out of the question. It seems that although I have enough platelets, they don't work. My creatinine jumped to 345 and it was deiscussed about the benefits of plasmatherisis, but they can't create an access point due to bleeding risk. Aswell as kidney biopsy, another bone and boe marrow biopsy is needed, yet it's too risky to do anything more invasive than blood tests.
Usually it's not too tricky to counteract blood that either clots too easily or takes to long to clot (there's drugs that can be used). But I'm a very tricky case. Platelets are the first line of defence for cuts and injuries - they plug up the gap (cut) by sticking together (mine won't stick). Then other parts of your blood finish the job off, becoming "sticky" near the newly platelet-plugged cut. The other part of my blood is "sticky" - too sticky. Therefore I'm at great risk of bleeding to death, but also getting blood clots (I've already had at least 3 DVTs). Therefore the drs haven't worked out how to combat the DVT/blood clot risks without causing major bleeding issues.
I'm off all anti-coagulation in hospital and I'm plugged up to a machine that massages blood from my calfs 20150805_185850.jpg For this weekend while I'm allowed home I've been put on a very low dose of Fragmin and regular compression stockings.
They did manage to do an ultrasound on kidneys. The image of the kidneys was very bright white which the radiologist explained that that occurs when kidneys are not working at all well. He also said he had found a cyst in the kidney. The dr later told me there were a few cysts with that were all normal (I guess she meant not dangerous) except for one which needs to be followed up on.
I think on my last post I'd said "I'm really not in too bad of a place" unfortunately I can't say that now. I'm having periods where I'm not feeling too bad, but then I'll only make it as far as the toilet and I'm about to pass out. I have not been this weak since I went through the initial period before I was diagnosed 20 years ago.
We (me and the drs) still don't know if my Wegener's is causing this severe weakness or the problem with platelets.
The current plan is simple - sort out the platelet problem as it's almost impossible to diagnose/investigate/treat any other problems when my blood won't clot. The pic of my left arm is my worse bruise (you can only see about half of it), but most of my body is now severely bruised except for face, knees and feet.
As this post is in my thread titled "Rituximab" I just want to explain that this new platelet issue isn't something that I'm warning people about as a potential side effect of Rituximab. I've had problems with severe bruising ever since diagnosed with Wegener's 20 years ago. Could Rituximab have made this platelet condition, which I guess I must have had for many years, worse? I really don't know, maybe the drs might figure that out next week.
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Originally Posted by gilders
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