My Child is the Best

Sunday, April 8, 2012

Gruessner (left) and Rilo (right)
They saved my life, cheeseball? Maybe, true? 100%!
Whitney, you don't have a child. The children? Arizona, Minnesota, Baylor, Cincinnati, South Carolina. These Universities perform the total pancreatectomy with auto-islet cell transplant. Anyone who has had this surgery, and had a positive experience, suffers from “my child is the best syndrome,” (the term was coined by Heather S., but I loved it) which is similar to that of a parent in a competitive setting. Except this isn’t a competition and lives are at stake, so the people are passionate. I am one of those people. My surgeons at the University Medical Center-Arizona are certainly the best.
A lady once told me to expect to be half the person I was before surgery.   My immediate thought was, “What a jerk” but now I pray she now feels much better than 1/2 the person she was and I forget about it. I only talked to the positive people before surgery and by mistake this lady! I wouldn’t allow someone to tell me how I was going to be after my surgery. The truth is I am doing well, but I still have the good and bad days, and some days I feel better than before my surgery.  My pancreas was a diseased and sick organ. It needed to go, and when it did my whole body felt better. God, prayers, luck, my body and its reaction to the surgery, and the biggest factor, my doctors have all played a role in my recovery.
I appreciate some of the varied approaches my doctors in Arizona took and I think some of them really played a key role in my smooth recovery. I do believe that not having any feeding tube, G or J, helped me a great deal. I was able to eat solid food day 5, and had my stomach gunk suctioned out through the hole already in my nose! No matter what way you look at this surgery, you will have some cramping and nausea with eating (my post operative pain in the butt!), but the longer you tube feed, the worse those cramps can be because your tummy is out of order longer. I am at week 7, having very little nausea and eating burritos and egg sandwiches (or whatever I want). I have gained 11 pounds so don't worry, weight comes back fast, and probably never stops  (yea I know, wow didn't know that till tonight). I also appreciate that my scar is only about 5 inches and is a thin line that had no stitches nor staples. That has nothing to do with my health and everything to do with my vanity, but I am very thankful the docs did that for me. If glue and strips are available, then why not right? Now instead of having two huge tube scars and a giant incision with staples, I have this very small scar which made my healing less painful too. One more thing that is the most important part of this post is feeling two things at your doctors: connected and comfortable. I had every surgeons cell phone number. Do you know how weird that is?  If you can’t say you do too where you are going, please ask me about Arizona! PLEASE. I called about pain meds, I called when I had blood in my stool at 3 am, I called about a doctor I did not care for, I called all the time. And they answered, and they fixed problems, and they helped. Number 2, comfort. I felt great in Arizona because I lived here. I lived 2 hours away. There is no greater feeling than being close to home. Even if its an hour flight, how much greater than a cross country trip!? If you don’t feel 100% comfortable with the center close to you, its probably worth it to travel, I would have too if I felt that way! Hope this “advice” column helps people as I know many struggle, like I did, about where to do this surgery. I wish I had something to read like this so that is why I wrote it. 
Like I said, all the centers do amazing work and all of them have one goal in mind, helping the CP patients! That is the real goal, and I wish this disease was not so unheard of and that every state offered it. But, it is getting more and more popular and more states are offering it. Do what your heart and gut tell you to do and you will be in good hands where ever you choose! But most of all call me and I will be your cheerleader! Anywhere you are, I will! 

1 comment:

  1. Hi Whitney. Been following your journey and your wonderful recovery. I just talked to Arizona today and they want me to come down and calling tomorrow to set things up. The last five days I've been feeling great, the best I have in months. Havent done anything different although attended a healing service. Been able to eat more and not much pain at all. Literally a miracle but not sure how long this will last. I guess I will see what they say! Thanks for all your inspiration!


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