Always thankful

One month ago I vomited a whole lot of emotion regarding the doctor that broke me down. I talked about how hurt and shocked I was to hear everything deep down I knew was true. I have an emotional struggle with Diabetes. I don't know why I have a hard time taking care of it, and why I go from a blood sugar of 34 and the next morning its over 300? Diabetes is a horribly hard disease for me to control, and so I just do what I can do... I am trying very hard to take care of it, but from one meal to the next is so exhausting. Everything that has a carb has to have insulin - carbohydrates are everywhere!!!!!

I followed up with the diabetes team who agreed that i needed to lose weight (no number at this point of the story) to try and help control my blood sugar levels. I explained why I was a bit frustrated with the way I had been treated etc, etc... this doctor then looks at the file notes and obviously I read them. My hatred for Dr. Mastin increased/flared up again. With a much clearer mind I read the things he wrote regarding the crying, the not being able to comprehend the seriousness of the second Pancreas transplan. I didn't cry after reading it, I just sighed and realized in my own mind that I don't think I will ever get another Pancreas. No one said it, I just feel it. So at that moment I decided I need to just keep my head down, mouth shut, and listen to what I am supposed to do... moving forward, I am getting an insulin pump "T:slim" http://www.tandemdiabetes.com/Products/t-slim-Insulin-Pump/ if you care to see what this thing will look like. Rumor has it this pump is legit and with insurance, I will pay for the insulin that is changed out every few days. It'll just be another prescription. Another one... #12 for the month. Sigh.

I also followed up with Bariatrics. Good god, if anyone has a low self esteem about their weight do not go to this place. I learned that i am obese and not anywhere near a weight i should be. I told the doctor that i just needed to be taller, a lot taller. Ultimately, I was instructed to lose 45 lbs, look like Karen Carpenter, and have 1200 calories a day. Seriously. Well, I added the Karen Carpenter part, but the rest is true. Painfully true. They suggested 2 protein shakes a day, 30g of Protein each meal, and minimal carbs throughout the day. All I kept thinking to myself during the appointment was how the hell can someone lose that much weight? What will I eat? I never thought of myself as a horrible eater, but carbohydrates are the diabetic devil. If you have carbs, you take insulin. Insulin adds pounds. Less carb intake, less insulin... so on, so on, so forth.

By the end of two appointments my mind was racing. For my close friends and family, you know what that means... I am talking fast, I can't focus on one thing, I am trying to plan in my head how I am going to make everything work, and it goes on and on and on. I have decided I need to focus just on my weight and my diabetes. Comments such as if you can control your diabetes, lose weight, and make a healthier lifestyle, you might not need the other transplant. *picking up signal* Other doctors talked about losing weight and regaining stability with diabetes, my Kidney will be able to stay healthy for a long time and shouldn't see any major rejection issues *another signal*  I overeact to everything and am always on the defense, so of course I THINK the second Pancreas transplant won't happen... but no one has officially given me the word. Maybe I need to have NO in my mind, kick down each hurdle, and maybe be surprised if and when they approve me.

Today is Thanksgiving. I can think of all the things I am not thankful for, but today I am going to pretend life isn't a hot mess and I am waiting for the "call".  I am thankful that I can call my sister and she tells me "it isn't a big deal, we can do that" when we both know it'll be a long journey.  I am thankful for my mom. I am thankful she is still able to laugh and make the same jokes that I love and hate. Thankful that when raking her leaves, she was outside telling us what to do and how to do it... although we still did it our way. I am thankful for the friends I have had for years and for the friends I continue to make. I am thankful for my friend's and their growing families. For the NYC Rockettes and for season tickets to the Orpheum. I am thankful for Kayla's laugh and for the man Brandon is becoming. His sense of humor is so amazing and when he goes to Texas next year, I will be thankful for him taking chances. I am thankful for my brothers who teach me a variety of things. I am thankful for pigs - pigs make insulin... insulin saves lives. I am thankful for Turkey Trot 2014 and that 2 women I have known for a few years had a fundraiser to help out with expenses. I am thankful that I have not given up and hope to not give up. I keep thinking of a time in DC when I was literally swimming upstream and wanted to stop. I wanted to quit and toss up the white flag - I am thankful that i didn't. I am thankful for the support of people who don't know they support me. I am so thankful for Kim and her amazingly strong Kidney. I am thankful for a full tank of gas. Thankful I am able to juggle my numerous jobs and still get up daily. Thankful to have health, rental, and car insurance. I am so very thankful for those who know how cranky and depressed I get, but still call, text, and communicate.

Life isn't going to be easy, I know I will want to give up, but that isn't an option. All I want is an opportunity to lose the 45lbs, go to NYC and shop. I pray and thank God that I have been able to see happiness and heartache in such a short amount of time. Over the last 4.5 years I have been provided with the best and worst moments. I have laughed, traveled, traveled, met goals, traveled, set goals, and learned that determination and dedication are a blessing and a curse.

I hope each of you have a Happy Thanksgiving and a great shopping weekend. Let's all think of what we have and how lucky we are... here is a story on how many lives can be saved from one donor. This family makes me happy as I know how this reciepient feels. Mark your license. Talk to your family. Organ donation has kept me alive and I am living proof that it does work!!

http://www.today.com/health/grieving-family-hears-sons-heart-beat-anothers-chest-1D80319971

I always try to read positive statements and motivate myself. I hope everyone knows how hard I am trying to make sure this story has a happy ending. I hope I am approved for another pancreas transplant. I hope I am able to meet all of the doctors demands.  Happy Thanksgiving and Merry Christmas!!

 

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!!!!! 

2nd verse, will it be same as the first?

2nd verse, will it be as same as the first?

I started this blog over four year ago and haven't written in it since March of 2011. And during the 2011 post, it wasn't for me, it was for a friend. I feel as if I haven't needed prayer or well wishes because I have been doing good. I have set goals and met them. Over the last 3 years and 4 months I have lived a life that I didn't realize I was ever capable of living. Well, Meggie is back, and might be looking for another Hank
I am all about anniversaries, I remember dates, events, and birthday's like its part of who I am supposed to be. On August 6, 2011, 31 military men, including a friend, Matt Mason died when a Chinook helicopter was shot down. On Tuesday, August 6, 2014, three years later, many close friends remembered our dear friend and American hero who was killed in action.  We talked of how many medals he earned, about the triathlons we have done in his honor, and the lives he will miss growing up and the boys he won't be able to play catch with. We changed profile pictures, said prayers and sent well wishes to the group of brothers who host the Cowboy Up Triathlon in Matt's honor every year.
This year on August 6, 2014,  I decided to test my blood sugar.  I hadn't been feeling well. I had all of the common "diabetic" symptoms that I chose to "forget". Constant thirst, frequent urination, so damn tired - all the time!!! Well, my blood sugar was over 450. At that moment a nightmare was coming true - Hank the Pank was not working... or something very wrong was going on.  I wish I didn't test my blood sugar, but if I didn't, who knows what would have happened.

So Wednesday goes like this... 
Test my blood sugar, freak out, call Transplant Coordinator Team "go to ER"
Check in at UNMC ER and they test blood sugar and its over 700 - (so high their machine can't read it) at this time my mind is doing that oh F my life -- what the F is going to happen now, is he dead, can he be saved?? over 700 is like death to any pancreas, let alone a transplanted one.
Get ultrasound of Pancreas and Kidney 
Go to 5th floor at Clarkson Tower - I am put on an Insulin drip to slowly bring down my sugars
Please know it is now 2:30 on Wednesday...
Dr. Miles (Kidney Transplant Team) comes in and tells me "man, i have no clue what this is. your levels were great on the 17th of July when you last came in for labs. you have a lot of ketones in your urine (fuck... that isn't good) so we don't know what do really say about the Pancreas. We will have Transplant surgeons comes in and talk about a plan"
Dr. Morris... "well, that sandwich looks great! you going to eat all of it?" (you bet your ass) Well, we don't want to call it rejection, but there isn't a lot of blood flow going in and out. There might be a clot, might be this, that, blah, blah...   we will do a Pancreas Biopsy on Thursday morning and we will know more at that time.
Diabetes team comes in and starts talking about an Insulin class, reteaching me.... I start thinking second verse, same as the first...
Thursday
Biopsy at 8am
Lot of testing of blood sugar. Every hour. Fingers poked and poked again...
Doctors come in and report same as before, "just waiting on result of biopsy"
although they are "waiting" on results, everyone including myself is preparing to hear that Hank the Pank is no more, and that we will someday restart the motions of getting back on the transplant list
Friday
It is just now 9:30, I am off of the Insulin drip. I have given myself insulin injections, just to make sure I remember how to do it :)
Now we just sit and wait for any and all results of the Pancreas biopsy. Hell, this could all be a bad joke, and a massive infection. Over the last 3 days of preparing myself that Hank has started an immediate shut down is actually happening.

Patti and I have been looking at this in a few ways - all are very true
1. It sucks
2. Its better than Aunt Kim's kidney shutting down
3.because she would be PISSED OFF!!!
4.dialysis would be a buzzkill and would take me away from so much more than Insulin will
5.Pancreas Transplant list is so much shorter than a Kidney one
6.Another awesome fundraiser? I say no, but she and others love a reason to party...

I just wanted to get all information out there so people would understan maybe this is why i have been acting so random, not being able to focus.......



AND literally the doctor walked in and said it's done. Hank is over. Rest in Peace. Here we go again....

Head up. Face forward. Lots of Xanex and back to work on Monday...  Let's do this!