Christmas

Monday, July 12, 2010

Frustrations and Discouragements

Well my first day back to work was less than successful for me :( I did go in and stayed until noon then went home after lunch feeling extremely frustrated and discouraged with myself for not being stronger and more able to focus and concentrate on my work, which made me even more angry at myself that I felt that way and not giving myself the benefit of time to get back into the swing of things. I hate that I am so hard on myself and don't allow myself the "flexibility" and tell myself that it is okay to not be 100% all of the time.

The rollercoaster is equally as exhausting as I try to digest and comprehend all of the information that I want to find about the translocation and our process for the future. There is so much stuff when you search for the syndrome (as much as anything else that you search for) and I still don't feel like I am educated enough but it really comes down to the fact that I don't have control over anything that happens from here as far as starting our family goes and I think that is what is most exhausting. There are so many unknowns and potential outcomes that I have no control over and no way of knowing what's next. Anyone that knows anything about me knows that when I don't have control over something that in itself ruins me in a sense.

We received the summary from our meeting with the genetics counselor and in an effort to share with anyone that is interested will post some of the high points from that meeting to help anyone that wants to be informed do just that without going through a lot of data that I have decided even the doctors don't understand. Angel had a translocation trisomy 13, an extra chromosome 13 as well as an extra chromosome 13 attached to her chromosome 14. During the last week before we had Angel, both Jay and I were tested for chromosome issues to determine if it was a "fluke" or hereditary and as I have mentioned I was notified that I have a balanced form of the translocation, meaning that one copy of my 13 and 14 chromosomes are stuck together (we all have two sets of each, one from each parent, for those that paid as little attention in biology as I did). Carrying this translocation places me at increased risk to conceive with the unbalanced translocation; while most of these pregnancies end in miscarriages, some (less than 1%...I have also come to HATE statistics!!) survive to 15 weeks gestation or longer (like our case...). It is "generally accepted that the chance to have another pregnancy that would survive beyond the 15 weeks is less than 1%" (again with the statistics...) and the risk at conception is higher resulting in an increase risk for miscarriage.

That, in a nutshell, is what information they were able to provide us with and that in itself is a lot to digest. But with all of the other information I am trying to process the best information (and most encouraging) is from the other members of the support group(s) that I have joined online. There are a couple that I have read on that have success stories and I try to find comfort and reassurance that we can and will have our family. It will not be an easy road, there will be other road blocks and I continue to try to gain strength and determination that I can do this, no matter what the costs or blocks that we are faced with. The doctors, from what I have heard and come to understand myself, don't know much about the translocations. There were a couple (different translocations of chromosomes) and they were told that they would never be able to have children and they have defeated those odds. I intend to do the same thing...I intend to get that strength and determination that so many of the other members of the groups have been able to do.

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