Perfection in a Year

Sunday, January 6, 2013

Tonight I’m posting for Jared and Jana and Clint, my new friends, who reminded me this past week that people do still look for my blog online, or come across it accidentally and it does help people! Please reach out, I love getting emails, calls and Facebooks from CP'ers.  I love bringing hope to people and I love to talk so let me share my story:-) 

2012’s  PERFECTION: 
You often hear people say that the transplant is a “trade-off” and they talk about how it is not “perfect” or a “cure.” I hated hearing that more than anything in the world before I had surgery. I just wanted to be who I was before all this began, and to be cured. So if you are reading this and gearing up for surgery yourself let me be the first to tell you that this was PERFECT. It was a cure, not a trade off, and it has given me my life back. 

Perfection to me means living your life the way you want to live it regardless of any limitations. It’s learning to live around those limitations and to not let them interfere with your life. I would say I have done this over the course of a year. It took me until about 4 or 5 months ago to really start living again, but I tried right from the start. This year was not perfect, my surgery was not flawless, and my post surgery life is far from interference free, but then again who has a perfect, interference free, and flawless life? NO ONE! 

A New Year in the No Panc Zone:
I have gone on a million trips (in the US, no where THAT exciting yet), gone out with my friends pretty much every single weekend for about 5 months (have to make up for the lost time), hiked mountains, got back into working out, learned about the joy of life, and have never been more blessed and thankful than I have been this year. Every day feels like a vacation and happiness is plentiful in my world today. I want to freeze the hands of time and just enjoy these blessings. Because life is crazy and we are all one moment from something happening, good or bad. 

What Problems:
When I would read blogs and hear someone say they had “problems” my mind would race and I would want to know WHAT PROBLEMS they had after surgery and into the next year of life. This year was not easy by any means. I went from taking a huge amount of narcotics to taking no medications at all except for Insulin and Creon (pancreatic enzyme). That is huge and was a problem to get off of, but it can be done. My other problem is type 1 diabetes. People say silly things like “Oh the transplant didn’t work” or “I am sorry” but the transplant worked and no one needs to be sorry! It just didn’t work out to where I avoided diabetes, but it worked! It gave me my life back, took away the pain, and fixed me. The last problem would be that I get nauseous from eating sometimes and I do think it is because the enzymes work well, but not just like the human pancreas. It really isn’t a problem either. All my friends know I always have Zofran in my bag, and I do still take one at least 5 times a week. I don’t consider it a problem, more like a change. The enzymes work and things are pretty “normal” in that area other than you have to remember to take 4 pills every time you eat. But trust me, I forgot one time and never will again.

D-Life in 2012 and the Future:
Diabetes usually doesn’t rule my life, but I won’t say I don’t have days with extreme highs and extreme lows with my blood sugar (as do most T1 diabetics). After a year I have just learned to live with it so much better than in the beginning. For example, this morning I was laying in bed actually typing away in a support group about how diabetes should not be a reason to avoid the transplant when all the sudden I sat up and knew right away I was in trouble. I struggled to get up, get juice from the fridge and drink it. I did all this without even testing my sugar because I knew I was minutes away from falling over. I unlocked my front door, picked up my phone, called my best friend and said “I’m LOW” and sat on the floor with juice. She talked me through it and said she would come over if I stopped talking. We laughed, I tested (49 horribleness), and I recovered from my low. I know the drill now, I know my body, I know to unlock the door, I know to make a call to anyone who will listen, things like that. Overall those moments are few and far between, and diabetes has become routine. I test my sugar in the car, sometimes behind the wheel (sorry Mom) with ease. I change my infusion set (needle/cath part of the pump) every 3 days and I monitor my carbs with insulin (I say this, but really half the time I am out to eat and playing the “how many carbs do I think this has” guessing game). Funny thing about diabetes is one day orange juice can send your sugar to 400 and then next it can stay at 120. You can eat the same exact foods, with the same exact insulin dosage each day, and your sugar can sky rocket one day and remain the same the next. Instead of flipping out at my lack of being able to control my sugar, I just roll with it now. I test, test again, correct, and try, but it will never be perfect and I am okay with that! 

As far as the future, no one knows. Not even my doctors. We don’t know how many islets are still alive in my liver, we don’t know how long they will live, we don’t even know if they are happy in their new home. My diabetes doctor said he would imagine I will never get off insulin. He also said that when I have babies I will probably lose all islet cell function and followed it up quickly with “who cares, have babies anyway and I will help you.” I won the lotto when I found this doctor too (after walking out on a doctor in Scottsdale mid appointment and forcing my mom to walk out too). I wish I could find someone who was 10 years out of their transplant, but I have yet to be able to locate anyone who is more than 4 years out. I remember thinking, “Maybe it is because they are all dead” and my parents even thought this too. The real reason is probably because there are very few people in the country who have had my surgery, and even fewer 10 years ago. I promise to be the girl who still blogs 10 years out from surgery, so others can see you don’t die, you thrive! I have only found ONE friend on the web that has had a baby after surgery. She got pregnant exactly a year after, and she had a normal, healthy pregnancy. She did end up losing all her islet cell function after, but her little “monster” (her words, not mine) has made it all worth it. This is one question that comes up when I talk to moms of little girls a lot. I get it and it is something you worry about. But as far as I know, you can live a perfectly normal life with no pancreas. I promise to let you know if anything comes up, but so far so good. 

My Medical Team:
I only have doctors that I love. WOW. Never thought I would say that. Arriving at this point was probably harder than any of the sickness part, I am not kidding. The feeling of an jerk in an emergency room (ER docs usually, sorry but they think they are God and I have had few to prove this theory wrong) telling you about your body and acting like they know all about a pancreas, when in actuality they know very little about your condition, has to be one of the most frustrating things ever. But, finally, after beginning this whole journey 4 years ago, I can say I have surrounded myself with doctors I love. My advice to you, if you have CP or even pancreatic cancer, is never settle on one doctor, even if they are telling you what you want to hear. Continue researching, searching, and fighting for yourself or you will never get better. I know this. I settled several times because doctors said they would do something to fix me, and then it wouldn't work or I would think I was at the "best" facilities in the country, when really all that matters is finding the best doctor. They are NOT all created equal. One hospital can completely misdiagnose you, while another can save your life. Research in the form of referrals. If you know someone who has survived by going to a doctor, make yourself an appointment with that same person! And always get second opinions. I am shouting this! I am bossy tonight. 

I will leave you with the picture that spoke to me on Facebook the other day:
"From every wound there is a scar, and every scar tells a story. A story that says, "I SURVIVED." 
Updated scar pics to come for my one year transplant-aversary, get excited! 

1 comment:

  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?





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