Update

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!!!

A bump in the road

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:)

paths crossing

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.

Consultation

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!

May 7th

May7th is a big step in my journey towards new islet cells! I will be going in to finally meet the research coordinator who I  have been really getting to know over the phone these past few months. I will also be meeting one of the doctors on the transplant team. We will be going over consent and any questions I have. This will take a few hours, and I could not be more excited! I am trying to take this process one step at a a time so I am not going to get too ahead of myself.
This study is a two year commitment and I am looking forward to all the twists and turns that may happen. It has been amazing to see how God has always put me exactly where I need to be. I have let go of my worry and anxiety and know that He will carry me down this road. This is going to be a very emotional journey in many ways. I am so blessed to have a husband who is just as excited about signing consent as I am. I have a group of supporting family and friends who will be here the entire way. I am proud to be apart of a medical team working so hard to make the lives of our generation and future generations better. Having two children I can only hope that they are not diagnosed with this, but if they are maybe it will be different. I feel like my whole life has been practice for this situation. All the medical issues and diagnosis, surgery and treatments have prepared me for one of the biggest procedures of my life!

I got a call!

So I seem to get all my updates on Fridays. Fridays are already great, so getting good new makes them that much better! All the doctors have said "yes" to move forward with me. The next step is going over the consent forms. I will be going in a few weeks to get that done. This just seems so surreal. It has not hit me that my life is already changed forever just by the journey I have been on so far. Letting the possibility in that this chronic illness could change even for a little while has made me realize that I have lived with some level of a wall built up. This opportunity has allowed me to break down those walls. And for that I am thankful.

Acceptance......

Last night on twitter there was a great discussion on acceptance. Acceptance of living with a chronic illness such as Type 1. I did not participate in the conversation but had a chance to read the questions and I would like to respond to them here. 

Q1. What are the things about living with diabetes that you accept? what are the things that you have trouble accepting?

I accept that it is something that I have to live with. I accept that I need insulin and I have to look at food a different way then other people. I have trouble accepting that it is FOREVER. There are days that  I am just "over it." I have days where I just cannot wrap my head around this being the rest of my life. Then there are days where I cannot imagine it ever not being an everyday part of my life. 

Q2.What, if any, is the danger of being too accepting about life with diabetes?

I do not think I have ever been "too" accepting. Maybe the danger would be that it is ruling you life? Maybe there is no such thing as being too accepting. 

Q3. There are a few tweets about “being too accepting of diabetes” & diabetes burnout. Do u think the 2 go hand in hand? why?

I think we are all human. I think we all have diabetes burnout, because it is hard. It is an everyday challenge. I do think being "too accepting" and burnout go hand in hand. We all go through different emotions about the disease at many different parts in our lives.

Q4.  How do you react to someone with greater/lesser level of acceptance of diabetes than yourself?

I don't really react. If they are on a greater level of acceptance then I can draw wisdom from that. If they are on a lesser level of acceptance I could only hope to help them by sharing my journey. I also believe that for me my level of acceptance changes with the roller coaster of life. There are times when I am way more accepting then other times in my life. 

Q5.  At what point did you accept that your child’s development of diabetes was not your fault? adults-when did you accept diabetes was not your fault?

I have never thought that it was my fault. I knew early on that God gave this to me for  a reason. I always felt like I could use it in my life to show other people that life is hard but you still can do great things.

Q6. Is  acceptance a one time thing, or is life with diabetes a constant cycle of acceptance?

For me it is a cycle. It has to be. I was diagnosed 12 years ago. I have gone through being a teenager, college student, wife and mother with type 1. I have not been able to go through all those stages in my life without being angry with type 1, then accepting type 1, then ignoring it. I am sure I will go though all those stages a few more times in this journey. 

I think acceptance looks very different to many different people. Right now I feel like I am not at total acceptance with my type 1. I feel like I am just tired right now. I  am always working on it. With the DOC I feel like I will have much more support then I have ever have and hopefully that will help me get back to acceptance.