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!

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. 

First Blog!

I want to start off by saying that this is my very first blog, so please be patient with me while I learn how all this works. I am a type 1 diabetic. I am coming up on my 12 year anniversary in May. It has been a long 12 years of up's and down's. I am on an insulin pump and have been for almost 8 years. I was 16 years old, just a few weeks shy of my 17th birthday when I was diagnosed. It was such a hard age to be hit with that news. I was a cheerleader and heading off to my senior year of high school trying to learn how to give myself shots, and check my blood sugar. I did not know another diabetic, and would not meet one until my second year of college. I felt alone, different, like an outcast. Like most teenage diabetics I was not good about taking care of things like I should. Heading off to college away from home made it even worse. I did not want to be different. I wanted to be like every other normal college girl trying to live that college experience. After a trip to the ICU I moved back home. I met my amazing husband early on in life. I believe all things happen for a reason. My husband, Jeremy's,best childhood friend happened to be type 1. The first type 1 I ever met. From the very first date he has been very involved with my type 1. Jeremy was the one that insisted I get on a pump. He helped me realize that it was okay to be different, that I could still have a great life along with checking my blood sugar and doing what I should to be healthy. We have been married for 7 years and he is still by my side everyday supporting me through every up and down that type 1 brings me.

March 14th was just like any other day. I was going to a new endocrinologist. I needed someone younger. Someone who could see me for more then a number. Someone who understood that my situation was desperate. My low blood sugars had really been getting bad. I wasn't feeling them like I used to. It was starting to scare me. I wasn't able to treat them myself. They would hit me out of nowhere. My blood sugars would just plummet for no reason. My husband travels for work and I had some scary episodes when I was home alone. There were times where I could not move. I could not get out of bed to take care of my kids. Instead of the lecture I usually get about how bad my A1c is and on and on, the new guy got it. He understood when I told him about my lows and how I purposely let my blood sugars run higher then they should so I don't get low at night when I am alone. He looked at me and what he said next changed my life. The doctor asked me if I would be interested in a clinical trial for an islet cell transplant. I had been reading about islet transplants for YEARS! To me it was something that happened in far away countries. Not the same city that I was living in!! I said YES! He gave me the contact information for the trial and I couldn't get on the phone fast enough.

After a ton of stress, phone calls, and paper work I finally heard the words I have been waiting to hear. "There is a place for you in this trial." That is what I heard on March 30, 2012. A date I will always remember. I still have a ways to go until my name is on that transplant list, but I am ready for this journey. The next step is signing consent forms. Then I will see a cardiologist, endocrinologist, kidney specialist, social worker and radiology. If I pass all of those exams, then my chart goes to a committee of 40 people and they put my name on that list. I want to share this journey with anyone who wants to come along. I know this is not a "cure" but it is an amazing opportunity to help future generations that might face this disease. I want to help find a cure. I want to make a difference.