The Atypical HUS Foundation

On the road to transplant...getting nervous, getting myself mentally prepared for the outcomes ahead of me

Well... I received some sort of news as to what is to happen when I am to receive a transplant. No donor in sight just yet, but there are tests being done and HOPEFULLY I will see some sort of results. I am told that I will be needing the plasmapharesis initially before the transplant can occur and then it will be the Eculizumab along with that.  I had to read a whole booklet explaining the whole procedure behind the Plasmapharesis "piece of cake" I said to myself, but in the process of the treatment, the side effects are a little bit scary, but at least the treatment doesn't take as long as dialysis does (2-21/2 hours).  I will be entered into the Incompatible Kidney Transplant Program at Johns Hopkins. I have had people match, but not completely match, which shows that I have something going on with the antibody aspect of the testing.

 

Before transplant can even occur, I have to be desensitized, so that will mean going to Baltimore to get the treatments necessary before I can be transplanted. I am not sure what sort of series of treatments  (meaning how long) they are going to present to me yet, because we're not to that point yet. My coorindator has been very good with me, in telling me what needs to be done and what could potentially happen.  So, all I can do is wait, wait, wait until donor evaluations are performed or when a possible swap is about to happen.  But, this feels like this could happen anytime now really, since I have had already a few people step up and get tested.  I have every reason to hope that my gift will come very, very soon...just have to keep on being patient and strong at the same time. My dialysis unit won't be the same without me, once I do receive that kidney. The staff often tells me that I bring light to the unit, that I sort of make it fun for them and for other patients around me (don't know how I do that...) I try to lighten things up a bit, because we're all in this thing together. Why should we sulk about it? We can make things fun when they are boring and very serious.

 

On another note: I will be starting dance classes up again this fall, which I am very excited about. I also have been offered another job interview next week for a part time Licensed Veterinary Technician working in the lab. The one interview went down the tube, because the company hired someone and they didn't want to meet with me anyhow. I have had to deal with some unprofessional individuals already, but in my mind, it's their loss if they don't want to meet with me...I just went along with what was presented to me.

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Comment by Jessica Olivia Frysz on August 20, 2011 at 11:43pm

Cheryl,

I already know I am considered highly sensitized due to the antibodies, I've had one person get tested and already, no match.  It is a lot to take in, when my coordinator emailed me a whole booklet explaining to me all of what is at stake with the program. I pretty much already knew what was at stake, just have to do what my medical team tells me.  I will keep everyone updated as much as I can, but I don't usually get updates until my coordinator gets them...so I only know as much as my coordinator knows at this point.

Comment by Cheryl Biermann on August 19, 2011 at 4:12pm
It's a lot to take in all at once, isn't it? Let us know about the anti-body stuff, it is an issue for our population, so I'm sure we will have lots of  interest in what is going on with that.

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