An Unlikely Christmas Miracle

I believe that miracles come in many different forms. They aren't always as "miraculous" as one might think. They can be the little things in life that most people do not even notice, or the big ones that truly change people's lives forever. For example, a father who is going to have knee surgery finds out he has two arteries blocked and may need bypass. To his children that is a miracle! When I was diagnosed with a very very rare blood disorder it was not "luck," it was not the doctor's. It was a true miracle that I survived and am sitting here typing right now. That diagnosis changed my life forever. It was not just a short lived miracle that I soon forgot about after remission. It is with me every single day. Everyday since then that I have been happy and healthy has been a "miracle." My hematologist who has been in his field for many many years only has one other patient who has every had my same blood disorder. I have learned to truly appreciate everyday that I am healthy and realize this is not a guaranteed future. So when I received a phone call today from my transplant coordinator saying that even though all of my test have come back in the range they want them in I might not be the best candidate for the islet transplant I had two choices. 1)get really really upset, sad and get my self pity on (which trust me was very tempting) 2) look at my amazing children who are happy and healthy, my husband who has been a miracle in my life everyday and myself who has overcome so much and I am still standing. I chose option 2. I have a choice. And I could sit here all day and ramble on about the amazing things and people in my life! I am a survivor!! I want to inspire people through my life! This blog is not over because my journey does not end because the islet trial ended. It has only begun. I have learned how important organ donation and blood and plasma donation is and I want to inspire with my stories! My life has been many many miracles big and small.

The Waiting....

This clinical trial process has absolutely been about "hurry up and wait." That has been the theme of my life for the past 6 months. I am currently in the "wait" zone again. The research team decided to run a test on me that usually is not done until I am in the hospital bed waiting for the transplant. The last two patient's transplants have failed. My heart breaks for them. They both rejected quickly. In those failures they made progress. The doctors learned that they need to run certain labs before patients are listed. These tests that I had done can possibly give them an even closer look into how I might respond to a transplant. Progress being made over the last few months is amazing! They are still learning so much with every new patient that comes through their office. It has been two weeks! I am hoping to hear some news soon. I am really learning patience. I am learning that I care about people I know nothing about. I am learning that I truly want success for other people even if it is a failure for me. If these tests show them that I should or should not continue with this, then that is called progress. The two patients that recently rejected, it was not in vain. It was not a waste of islet cells. It was progress.

The road keeps winding.....

I received an update today about my transplant. The number that was too high back in May came down to normal! That is such a miracle just in itself. The blood work showed a few antibodies that I was reacting too, so the next step is to have a pathologist look and see if any of those things would mess up the transplant. I should hopefully have an answer by the end of the week.

This has been such an amazing journey so far. I really feel like I have learned a lot about myself and my God.
Thank you everyone for all your support and prayers! I will keep everyone updated.

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!