This morning I had a hematology consult. I got a call last week to tell me about the appointment and the man only said I had a hematology appointment today on the 2nd floor 'follow the signs'. Unfortunately, I didn't think to ask what unit it was in and just assumed that there was a hematology unit. Nope!
This morning, when I went to go 'follow the signs', there were no signs for 'hematology'. I asked at information and the women had no idea what I was talking about and sent me to the Benign Hematology Clinic (makes sense I guess since it has the word hematology in it). Those people also had no idea who I was and sent me to the 2nd floor. I recognized some other transplant people so I followed them and went to register only to be told that that was the colonoscopy unit and I was not on their list (huge sigh of relief). I was eventually lead to the right place when a nurse looked me up in the computer and directed me to the Apheresis Unit. I'm not sure how they just assumed I would know that.
Of course an unexplained appointment meant that I assumed I had blood cancer. But no (I don't know why I always think cancer) turns out the doctor just needed to get my signature on a consent form for a plasma transfusion during transplant.
The actual point of the appointment was to tell me that because I have high levels of antibodies, my body will most likely start attacking new lungs (unless I happen to get a set of lungs with nothing that my body has an antibody for) before I can get started on the immunosuppressive meds. As a result, my body would reject the lungs in 48 hours and I would die. He was very blunt about the low chance of me finding a perfect match without doing the transfusion and if I passed up on one set of lungs, who is to say there would be a second pair for me, or what if I got an infection while waiting for the second pair (I felt it was a bit like 'agree to this or die' which I thought was pretty intense).
Since I am high risk for rejection because of my super high antibody count, what they do is put me on the Apheresis machine which takes my blood and centrifuges out my plasma (the super antibodies) and puts in new plasma (with fewer antibodies) and puts it back in my body. This will put me down to a 'normal' or even 'low' risk of rejection. They run my blood through the machine 4 (I think) times during the actual procedure and then once every day for the following 4 days.
The doctor said they have been doing this for 7 years and it works really well. They are one of two places in North America that does the procedure so I guess it is still fairly new but the benefits definitely outweigh the risks on this one. The risks are pretty standard; because it is a IV line (in my groin), there is the typical risk of infection or itchyness. The other risks are the ones from plasma transfusion: fever, fluid in lungs, HIV, Hep C, etc... The doctor said the risk of HIV and Hep C is less than 1 in 7 million or something crazy. He kept repeating 'there is almost no risk of getting HIV' so much that the more he said it, the more concerned I became (It's like when someone says there is nothing wrong so many times that you know something is wrong). But seriously, it's not worth worrying about.
In conclusion: I will most likely need a plasma transfusion during the operation so everyone start donating their plasma so there will be lots banked for me when the time comes!
2 comments:
I wonder what the other centres do than if they are only 1 out of 2 that does it? Whack you full of anti rejection meds right away? Odd
I have no idea, this is the first I'm hearing about any of it...my uneducated guess would be that you just wouldn't get those lungs and would have a smaller selection of possible matches.
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