Thursday, May 31, 2012
I just got a phone call and my transplant team is not ready to give up on me. We are doing some more specific testing in September. They want to see if my test is fluctuating at all. I am at peace with whatever the outcome is. I am so thankful for this team of amazing people who are fighting so hard for me!!!
Yesterday I received the news that I did not want to hear. Kerri, my research coordinator, called me to say my Panel Reactive Antibody test came back too high. She did not have to go any further. I knew exactly what that meant. That this was the end of the journey for now. Kerri remembered that I had been sick at the time of the test and said that was good and she was going to look into re testing me. Apparently being sick at the time can mess with the results. She also said this is a test that the results can fluctuate over time. So maybe this is not the end, but right now at this moment I am at the end. Am I ok with that? Not completely at this point. Am I working on it? Yes! I am truly thankful I got this far in the process. I am truly blessed for how hard this team of people have fought for me to have this procedure. It was life changing to have a group of people for the first time in my life understand what I am going through with this disease. I feel good knowing about all the work they are doing to try and find a cure. I am a firm believer that God knows what is best for my life and he has a reason and purpose in every decision that is made. I have totally put my faith in him during this process and continue to do so. I have peace knowing that His hand was in this. He knows where this road will lead and I will follow. I have spent 12 years with my type 1 and I can spend 50 more if that is what I need to do. This is the end of my blog!!!!! Stay tuned for more updates:)
Wednesday, May 16, 2012
This week I started my medical evaluation! I am very thankful to have gotten to this phase. If something does not work out at this point it is because it is not whats best for my body. I did my ophthalmology and my first 20 vials of blood. There is one test called the PRA (Panel Reactive Antibody). This could come back high and would mean I am not a good candidate for a transplant because I would be really hard to match and very likely to immediately reject the islet cells. I feel very at peace with this situation because I honestly feel like I have gone down a really long road for a reason. Back in July I was diagnosed with a rare blood disorder called TTP (Thrombotic Thrombocytopenic Purpura) It was very random and happened out of no where. The cure is a treatment called plasmapheresis. I went through 11 of those treatments. All of my plasma was removed and replaced with 132 bags of new fresh plasma and my blood was cleaned also. When doing some research about this PRA blood test I stumbled across some medical journals saying that plasmapheresis is a treatment to help bring the PRA number down. The fact that these two paths have crossed has really been amazing to me! God's hand is in everything from day one. I can go back over 2 years and connect experiences that have led me to this moment right now. This is all why I am at peace with this situation and how it turns out. Writing this blog is about the journey, no matter how it ends. That is the beauty of life! Not knowing how it turns out but having faith that it will all make sense sometime, somewhere, somehow.
Tuesday, May 8, 2012
Yesterday was my consultation for the islet cell transplant. I will admit I was very nervous going in. I was not sure what exactly to expect. I was meeting with the research nurse and one of the transplant surgeons. I was so relieved with how the entire meeting went. It could not have gone any better. All of my questions were answered and I found out even more wonderful things about this trial. The surgeon was great about explaining things very clearly. He talked about risks and what has gone on with other patients. He covered what all my options are. I feel so comfortable and informed about this process. I am truly blessed to have the opportunity to go through this. We went over the consent form and I was sent home with a copy to go over with my family and make sure this is what I want to do. Jeremy and I feel like this is absolutely the road we want to take. We will be going in next week to sign consent and start my medical evaluation. It was two pages of tests! So I will be spreading that out over a few weeks. If my medical evaluation is clear then the committee reviews my chart to make sure everything is in order and then I go on the transplant list! I want to thank my friends and family who have already been so supportive about this process. I could not go through this without support. No matter how this process turns out, if I make it to the transplant or not, I am truly thankful for all the great people who have helped me get this far!