A Journey Like No Other

I haven’t posted in a few days, but here is what has been going on lately! I was officially “listed” and my waiting time began on Friday April 12, 2013. When they called they told me I was on the list with 9 other people, and that I had no antibodies in my blood. If you are like me, you are probably wondering what in the world that means and how it affects me.

Well, from what I have gathered from numerous blogs and discussions on another website for transplant patients is this….everyone has some type of antibodies in their blood. When you are being considered for a transplant they test you for certain antibodies what could cause problems with the transplant if they do not match exactly to the donor. They are called HLA markers, and the more you have, the harder it is to match you with a donor because of the adverse reactions you could have and also the higher possibility of rejection. They take the number of “markers” you have and put into a form of algorithm and come up with a level called your CRPA level. Well…I do not have any of the “markers” that they test for, so this means I am placed higher on the list because they know they can match me with any O blood type donor, with any of the markers and my body will accept it. This is good news:):)

When they called I also asked if they could possibly tell me my exact place on the list because of this and if they thought my wait would be shorter than 6 months. SHe could not tell me exactly because anything is possible still for those that are ahead of me and if she tolds me an estimated time frame, and for some reason it went beyond what she said…then she could be sued…which I wouldn’t sue anyone, but still..I understand she has to follow procedure:) She did tell me that she would advise that I keep my phone on and on me at ALL times and be available to answer at any time. So that is making me anxious!

I am trying to keep busy and continue going about my everyday “mom” activities and not stop and put my life on hold out of fear that they may call, but it is realy hard sometimes. Brandon keeps talking about it like it is happening right now, and that is stressing me out, especially when I am trying not to think about it and dwell on it…lol:) I know he is just as anxious and nervous as I am. If I were in his place I would be an emoitional mess and stressed out just as much, if not more. He is truely my rock and has listened to every worry, fear and worst case scenario that have come up with and reassured me. He has listened to me cry and question if I am making the right choice and never once complained or made a rash reaction. I wouldn’t want it any other way and I kinow he always has my back, no matter what:)

Many people have asked me WHY?, Why would I even consider this procedure after hearing the risks, possible outcomes and statistics about the procedure. The answer is fairly simple to me. I am not looking for this to “cure” my diabetes, I will always be a Type 1, that part of me makes me who I am, I have lived with diabetes far too long to let it go and forget the others who are still fighting. The reason for this procedure was not even my idea, yes..I have thought of it in the past, but did not fully understand the details until recently. This was somethiing brought up by my Endocronologist and Nephrologist.

Almost 2 years ago (May 2, 2011) I had a kidney biopsy because I was spilling an unheard of amount of protien into my urine. They thought for sure that it was related to the diabetes and the length of time I had been a diabetic. This was the 2nd biopsy that I had done, the first was when I was 15 years old and they never really told my parents what the findings were. This last biopsy revealed I had a rare kidney disorder called Focalsclerosis, a kidney disease commonly found in African American Males….which I am clearly neither, lol. The disease has no cure and the kidneys will eventually fail in most cases, not all. As of right now, my kidneys are considered to be high functioning, even better than some normal people, which is odd…but possible. My doctors are suggesting the pancreas transplant in order to relieve some of the strain on my kidneys, diabetes causes kidney damage, as does the other disease. They are trying to be proactive rather than wait for my kidneys to fail and then do a complete dual transplant. They cannot say when or even if my kidneys will fail, so the best preventative measure is to eliminate one of the things working against them…Diabetes:)

I am thankful for such great doctors, they did not push me into this decision, they gave the information I was seeking and then gave me their opinion and the reasoning behind it and Brandon and I came to the decision together. I want to be here for my 3 small children, I want to see them grow and live life to the fullest but I cannot do that if I, myself am unable to live life to the fullest at the age of 28. Am I scared of the risks? YES Am I scared of having to do this all over if the organ is rejected? YES Am I scared that I could die trying to save my life and better the life of our family as a whole..MORE THAN YOU WILL EVER KNOW. But I will say this, my God would not bring me to this place in my life if he was not going to see me through it and be there to give me a peace about it at every question, worry and thought that I may have. There is a reason for everything and He already knows the outcome and the reasons that I will discover as I take the journey with Him by by side.

I am FEARLESS, BLESSED and have the best support system I could ever imagine:)

Today is Tuesday April 9, 2013. Today is the day that the doctors, social workers, case managers, nurses, transplant surgeons, psychiatrists, and financial advisors meet to discuss the people that have been through the required testing and meetings etc and decide their candidacy and the status of their candidacy.

Throughout the week that we were at the Mayo Clinic we were told by 2 doctors and the surgeon that I should not worry about being declined, because I was the primary age, weight and other criteria that met the pancreas transplant requirements. Even though they told me this, it is still nerve racking that I may have gone through all the testing and there is still a chance I could not be listed right away.

There are 4 different ways to be listed, (1) APPROVED, meaning no other testing is required and you have met all criteria and are healthy enough to endure the surgery. (2) STATUS 7, meaning that you are available to be contacted for an offer of an organ, but that your distance away from the clinic, finances and home life may prevent you from being able to take it or you have an active infection, hospitalization or out of date medical evaluations and thus resulting in less calls for organs. (3) DEFERRED, meaning you need further evaluations and lastly (4) DENIED, meaning you do not meet any of the criteria and can re-apply for the Transplant Program, but will have to go through the entire process again.

Once the meeting is over, the minutes have to be validated and that could take a day or a few days..either way we were told that my Transplant Coordinator would call before the end of the week and let me know what the decision is regarding my candidacy. So needless to say I will be on pins and needles until I get the FINAL and OFFICIAL word that I have been placed and my primary waiting time has started:) Have a blessed day:)

It has all started:) My husband and I arrived in Jacksonville, FL around 9pm on March 31, 2013 for the week of testing and Dr appointments to decide my candidacy and placement on the transplant list for a pancreas. I was anxious and ready to meet the doctors and staff at the Mayo Clinic the next morning. I had a detailed schedule of what was going to take place and when it would take place over the course of the week, but I was still nervous, scared and anxious for it to be over and talk with the doctors about the testing they were doing. The week was filled with tests on my heart, ultrasounds, blood work, classes, meetings and probably a lot more that was all a blur:) We are now waiting on the Dr to call me and tell me that I have officially been placed on the list, where I am on the list and my approximate wait time. We were told by several people at Mayo over the week that the wait time could vary from 6 months to 1 year, but that most occur within 6 months of being listed. So it is exciting and nerve racking and of course I am scared to death….but it is all in Gods timing and everything will happen as it should:)