A true feeling of shock and disappointment

A few months prior to beginning this blog in 2010, I went to UNMC for two days of "Pre Transplant" testing. This is a normal work up regarding blood work, TB testing, Psych eval, Echo cardiogram, etc. For anyone who is schedule to apply for any kind of transplant, I believe that this is the general process.

Today, October 29 was day 1 of Pancreas #2 Pre Transplant testing. Over the last few weeks I haven't been feeling great and was feeling more anxiety than normal. I could blame this on Diabetes, the Royals and all of the extra inning games, or even something to do with work. But as this entry continues, you realize gut feelings are something to follow...

Today started at 730 with 15 vials of blood work and an EKG. I had no issues with any of those items, was on schedule, and kept on moving along. 815 I go for my chest X-ray, run into a high school friend, and after about 6 minutes, I continue to breakfast and off to Transplant Team. 

At first we do the vitals, meet with the pharmacist and financial advisor. Every time you talk with a financial advisor regarding a 20,000 work up for pre-testing, and a transplant at the cost of 180, 000 you get a bit chocked up and might tear up. When you see the costs of medications that cost over 2,200 without health insurance, you start to over think -- what if I lose my job? What if this, what if that? You begin to get emotional, and from time to time, you might have some salty fluid come from your eyes... I know I did. I chose to be there alone, but to hear and really understand what they were telling me, it was scary and emotional. 

During my Psychology appointment, again I tear up talking about my image issues, my fear of my Kidney failing if the Pancreas isn't transplanted soon enough. *** In 2010 my family and I didn't want me to have the Pancreas Transplant. I was scared for two different surgeries, so we wanted just the one to keep me alive. We were told that as a Diabetic, when you live with a transplanted Kidney, you want/need to have a healthy Pancreas for the Kidney to live a longer and healthy life. ***

Over the last few months I have been thinking in fast forward about this transplant to assure that my transplanted Kidney wouldn't begin to fail. I assured blood work was done, I checked and double checked my blood work monthly and the Kidney is so strong that the doctors are OK if I don't have another Pancreas transplant. Correct. 

This afternoon I started to listen really hard to the questions that the doctors were asking about my diabetes and what made me a good candidate for another Pancreas transplant. I answered with the reason we had the transplant in 2011... to assure Kace the Kidney remains healthy and ultimately keeps me alive. "Why don't you take care of your Diabetes?"  "EXCUSE ME?" - for those that know my look and tone, you know how my eyes opened and head turned. I do take care of my Diabetes. Years ago I struggled with a disease I didn't understand and hated to deal with at the age I was afflicted with it, but I am trying my best. "How often do you test yourself?" "why don't you have a pump?" "Will your insurance pay for a pump" "what is your weight loss plan" more and more random questions about me living with Diabetes and discussions of meeting with Bariatrics... insert sobbing, can't catch my breath, what the good God, hell is going on right now? It feels as if I am not really in a place I am familiar. I know where I am, but I feel as if I am on an aircraft going to Mars...

In the time of 45 minutes I think I am getting reviewed to be approved for a 2nd Pancreas transplant to the following statements from a doctor that I met 20 minutes earlier...

1. do you take care of your diabetes

2. why do you think you should be approved for another transplant

3. out of all the patients we see, you are the only one who has cried to every single one that has entered your room

4. insert need for Bariatric doctor appointment and special diet needs

     ~~ Dr., how does any of that not make me a good candidate? do you think i am not mentally stable because i am showing emotions? do you think i don't understand that you are completely shaking up my world? do you believe this is a shock to me and when someone is in shock or hears something they aren't expecting most times they cry? (few moments of awkward glare). Please let me compose myself so you know who I really am, and not some pussy you think cries all of the time.

     ~~ So, to be clear, I am too fat in my abdomen area for the surgery, and you are telling me that I will need to meet with another surgeon before we move any further? 

5. As of October 29, 2014 you are not an appropriate candidate for a second Pancreas transplant.

     ~~ my heart sinks and take a deep, deep breath and look directly up in the air. No eye contact might help me to not cry. 

Today was one of my saddest days. I  went to Nebraska Medicine knowing I am overweight. I know any and all surgeries are high risk. But the way I felt as a patient and for being called out for showing too much emotion or more emotion than any other patient, what a hurtful thing to say. 

I left there not knowing what the plan was or wasn't. I left wondering what do I do next?? Well, in the middle of November I am going to follow up with the Diabetic doctor and try to be a better diabetic. I have an appointment with Bariatric (how about sending someone with the lowest of low self esteems to a clinic such as that)... 

Until we know more, I will remain Diabetic, bitter, morbidly obese, and still trying to wrap my head around why this all happened so fast.   

Today I learned I won't be getting on a transplant list, tonight let's end a 29 year streak!!! GO ROYALS!!!!!